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Anticipatory grief in families of cancer patients Warren, Barbara 1978

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ANTICIPATORY GRIEF IN FAMILIES OF CANCER PATIENTS by  BARBARA WARREN  A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE in THE FACULTY OF GRADUATE STUDIES THE SCHOOL OF NURSING  We a c c e p t t h i s t h e s i s as conforming t o t h e required standard  THE UNIVERSITY OF BRITISH COLUMBIA A p r i l , 1978 B a r b a r a Warren, 1978  In presenting this thesis in partial  fulfilment of the requirements for  an advanced degree at the University of B r i t i s h Columbia, I agree that the Library shall make it freely available for reference and study. I further agree that permission for extensive copying of this thesis for scholarly purposes may be granted by the Head of my Department or by his representatives.  It  is understood that copying or publication  of this thesis for financial gain shall not be allowed without my written permission.  Department of  A?ISJ?S/#J.  The University of B r i t i s h Columbia 2075 W e s b r o o k P l a c e V a n c o u v e r , Canada V6T 1W5  D  a  t  e  y ^ ^ J P ^ .  /?y^-  ABSTRACT  Anticipatory action which occurs perceived with the  prior  families. cancer  with  study  described  as a g r i e f r e I f cancer i s  of patients  diagnosed  upon l e a r n i n g o f  p r o f e s s i o n a l s must have of this  t o these  a  syndrome i f t h e y  p a t i e n t s and t h e i r  t o determine  does p r e c i p i t a t e t h e m a n i f e s t a t i o n s  i fa  diagnosis  of anticipatory  b y E. L i n d e m a n n i n members o f t h e p a t i e n t ' s  These m a n i f e s t a t i o n s  the patient, depression,  include heightened a review  preoccupation  o f t h e p o s s i b l e forms o f  t h e p a t i e n t and a n t i c i p a t i o n  o f t h e modes  r e a d j u s t m e n t t h a t would be n e c e s s i t a t e d b y h i s death. Using  ended q u e s t i o n s ,  a semi-structured  children  and p a r e n t s  were recorded  interview guide with  the investigator interviewed  members o f f o u r t e e n  of  Health  was d e s i g n e d  d e a t h w h i c h may b e f a l l of  loss.  anticipatory grief  comprehensive care  This  first  family.  relatives  awareness o f t h e m a n i f e s t a t i o n s  t o provide  grief  t o an e x p e c t e d  may e x p e r i e n c e  patient's diagnosis.  are  has been d e s c r i b e d  as a t h r e a t t o l i f e ,  cancer  greater  of  grief  patients.  The s a m p l e i n c l u d e d  of the patients.  on audiotapes  twenty  open-  family  spouses,  A l l of the interviews  which were used  f o r content  analysis  the data. Of  festations,  the twenty subjects, s i x mentioned three,  seven described three  a l l four  mentioned two,  three  mani-  mentioned one, and one s u b j e c t d i dn o t m e n t i o n festations. subjects, thirteen Other  Heightened  preoccupation  common r e a c t i o n s e x p r e s s e d  specialists,  and a f e e l i n g  i t s treatment.  subjects'  Family  expressions  were  seventeen  forms o f death  o f modes o f r e a d j u s t m e n t  consequences, hope i n s p i r e d  and  was d e s c r i b e d b y  depression by sixteen, reviewing and a n t i c i p a t i o n  any o f t h e mani-  by nine.  fear o f the disease  by knowledge gained o f ambivalence  by  and i t  from t h e c l i n i c '  toward  the disease  d i f f e r e n c e s were emphasized b y t h e  o f concern  about t h e r e a c t i o n s o f other  members o f t h e f a m i l y . The theory grief be  this  the  grief  and suggests  disease  i s inevitable  study  influential.  t h a t i t may  following toward  situations.  are other  universally  a diagnosis of  this  disease  may  i f knowledge  are significantly grief  also  made i n t h e l i t e r a t u r e  i s needed t o determine  of anticipatory  and i f t h e r e  anticipatory  g r i e f was n o t e x p e r i e n c e d  or perception of the disease  the experience  Lindemann's  range o f l i f e - t h r e a t e n i n g  that the attitude  Further  that  f o rassessingtthe  g r o u p was c o n t r a r y t o s t a t e m e n t s  changing.  level  indicate  p o p u l a t i o n and suggest  anticipatory  anticipatory  cancer  to  that  study  as a framework  reactions of this  fact  that  be  c a n be used  of this  applicable i n a wider  The by  results  i nthe early  related stages  f a c t o r s w h i c h may b e  of  - i v-  T A B L E OF CONTENTS Page ABSTRACT  i  i  T A B L E OF CONTENTS  i v  L I S T OF T A B L E S  v i  ACKNOWLEDGEMENTS CHAPTER 1  v i i  INTRODUCTION  1  C o n c e p t u a l Framework Problem This CHAPTER  CHAPTER  2  3  Statement  and Purpose o f  Study  8  LITERATURE REVIEW  10  Summary  39  METHODOLOGY  42  Study Design  42  Sample S e l e c t i o n  43  Data  Collection  47  Data  Analysis  52  Summary CHAPTER 4  3  •  RESULTS Pilot  54 56  Study Results  Reliability  o f Coding Method  56 57  Sample D e s c r i p t i o n  58  Manifestations  60  Depression  Experienced  63  - V Page Heightened  Preoccupation  Anticipation Reviewing Additional  o f Modes  70  o f Readjustment..  76  Forms o f Death  81  Common R e a c t i o n s  87  Fear  87  Hope  89  Ambivalence  90  Concern About t h e R e a c t i o n o f Other  F a m i l y Members  93  Summary CHAPTER 5  96  DISCUSSION Heightened  97 Preoccupation  102  Depression Reviewing  104 Forms . o f Death  Anticipation Other  o f Modes  105  o f Readjustment..  106  Manifestations  Concern About t h e R e a c t i o n s  106 o f Other.  F a m i l y Members. CHAPTER 6  SUMMARY AND C O N C L U S I O N S  109 I  l  l  BIBLIOGRAPHY...  122  APPENDICES,  131  - v i -  L I S T OF  TABLES  Table 1  2  3  4  5  6  Page Age and R e l a t i o n s h i p Patient  o f Subject to ..  Manifestations of Anticipatory Described by Subjects  ,.  59  Grief 62  Behaviours Described by Subjects which were I n d i c a t i v e o f Depression..............  64  Described Behaviours I n d i c a t i v e o f Heightened Preoccupation  71  Described Behaviours Indicative o f A n t i c i p a t i o n o f Modes o f R e a d j u s t m e n t  77  Behaviours Indicative Forms o f Death  82  of  Reviewing  - v i i -  ACKNOWLEDGEMENTS  The  a u t h o r i s g r a t e f u l t o t h e members- o f  her  committee, Mary Cruise  Cox, of  for their  this  Director  guidance i n t h e development  t h e s i s and t o L o r i n a o f Nursing  i n analyzing  throughout  Friesen,  a t t h e Cancer  Agency o f B r i t i s h Columbia ance  and B e v e r l e e  Control  for her assist-  t h e d a t a and h e r support  the project.  Chapter  1  INTRODUCTION  Cancer t o h i m as w e l l .  afflicts Smith  not only  (1975:80) s t a t e d  f a m i l y member h a s a d e l e t e r i o u s Surely, and  few would deny t h i s  will  threatens  always be a f f e c t e d an i n d i v i d u a l The  cancer w i l l of  every  prepared their tial  will  t o provide  In order  i n some w a y b y a n y t h i n g  today.  diagnosis  t o provide  t o deal While  cancer  with  this  The h e a l t h  that  afflicting team must be  t o these patients this  goal,  health  o f care  and  i ti s essen-  members o f a  area,  one  patient's  professionals  necessary  t o enable  crisis.  the expectation  i s increasing with i s s t i l l  t o him.  families,  affects  the quality  animal  which  (1974) i n d i c a t e d  t o accomplish  with more knowledge i n t h i s  be able  family."  Man i s a s o c i a l  i s important  close  illness of a  on t h e whole  comprehensive care  t o l e a r n how t h i s  families  with  alive  "serious  statement.  two o f e v e r y t h r e e  persons  families.  family,  who  effect  American Cancer Society  strike  four  the patient, but those  o f a longer  life  f o r patients  e v e r y new t r e a t m e n t  diagnosis  o f cancer  greatly  feared.  observed,  " T h o u g h i t may b e u n r e a l i s t i c  o r drug, t h e  Marino  and i l l o g i c a l ,  (1976:26) the  fact  -  is,  most p e o p l e  cancer  with  Creech  2  -  ( i n c l u d i n g most h e a l t h p r o f e s s i o n a l s )  view  a s p e c i a l dread."  (1975:285) s u p p o r t e d  this  view:  I n our s o c i e t y , cancer has a p a r t i c u l a r l y negative c o n n o t a t i o n w h i c h compared t o o t h e r c h r o n i c d i s e a s e s , even those w i t h a s i m i l a r prognosis. Many p e o p l e f e e l the diagnosis of cancer i s equivalent to a death sentence, but t h a t a myocardial i n f a r c t i o n i s l e s s threatening and s o c i a l l y more a c c e p t a b l e . Bahnson  (1975:294) p o i n t e d  out:  T h e r e a r e many p o s s i b l e e x p l a n a t i o n s f o r t h i s s o c i a l u n a c c e p t a b i l i t y of cancer. Perhaps the most relevant i s r e l a t e d t o everyone's fear of prolonged and p a i n f u l s u f f e r i n g d u r i n g t h e t e r m i n a l s t a g e s o f cancer. T h i s i m a g e c o n t r i b u t e s t o i t s r e p u t a t i o n as the most dreaded d i s e a s e . 1  This  fear w i l l  individual's loved  reaction to  The  indicated detection.  cancer, that  two  So,  considered  fessionals its  i s true  that  American Cancer  nosed w i t h  be  play  a large part  a diagnosis  of  in  cancer  determining^the i n himself  or  a  one. It  1974  inevitably  are  prognosis.  not  Society  four w i l l of these  i t should  a l l , patients die of  be  a terminal or  said that  of  cancer.  s i x persons  die.  Four not  six!  deaths  c o u l d be  prevented  apparent that fatal  disease.  becoming more o p t i m i s t i c However, these  In  cancer  The  diag-  same by  early  cannot  Thus, h e a l t h  about the  source  disease  p r o f e s s i o n a l s must c o n t i n u e  always proand to  - 3 -  be  cognizant  of the possibility  may n o t v i e w t h e d i s e a s e  and Shadick  perience in  similar  her studies  similar,  Gullo,  and t h e i r  to life.  patients  stages t o those described  the authors  Cherico  as a t h r e a t  (1974) f o u n d t h a t  o f dying  these differences  patients  i n t h e same w a y a s t h e h e a l t h  Cancer i s perceived Cherico  that  patients.  identified  team.  Gullo,  with  cancer ex-  by Kubler-Ross  the reactions  some d i f f e r e n c e s  to a difference  and Shadick  While  families  (1969)  were  and a t t r i b u t e d  i n perspective.  (1974:53)  stated:  One s i t u a t i o n i n v o l v e s a t h r e a t t o l i f e , t h e o t h e r demands a c o n f r o n t a t i o n w i t h t h e c e r t a i n t y o f d e a t h . S p e c i f i c a l l y , i n a l i f e threatening i l l n e s s , death i s o f t e n p e r c e i v e d as one o f s e v e r a l p o s s i b l e outcomes; i n the aware t e r m i n a l p a t i e n t , d e a t h i s r e c o g n i z e d as t h e p r o b a b l e outcome. Lindemann of  (1944) f o u n d t h a t  a loved  labelled  one e x p e r i e n c e genuine g r i e f  anticipatory grief.  perceived  as a t h r e a t  may e x p e r i e n c e the  i n d i v i d u a l s threatened  patient's  Conceptual  Subsequently,  to life,  which  as c a n c e r  reactions  upon  the loss he  i s often  f a m i l y members o f c a n c e r  anticipatory grief  patients  learning of  diagnosis.  Framework Anticipatory  frequently  reactions  with  i n recent  grief  i s a term which  literature.  While  i s being  used  few authors have  more described  - 4  it,  -  most agree/lit i s a g r i e f r e a c t i o n  expected occurring  loss.  Aldrich  prior  (1974:4)  to a loss  defined  at or  after  is  the  first  stage o f bereavement:  of  anticipatory  yet  happened."  impending before grief  the loss."  Gerber  i s that  Weisman  we  (1974:27)  occurs prior  the term  as d i s t i n g u i s h e d  occurs  grief  which  grief  from the g r i e f  which  "the unique  mourn  stated  that i t  characteristic  for a loss  agreed:  that  has  "when t h e r e i s  death the p r o c e s s o f g r i e f or g r i e f work b e g i n s  the actual as p a r t  death."  Meyerowitz  of a desocialization  an  "any  (1974:15)  as  to  (1974:79)  saw  not  an well  anticipatory  process:  These c u l t u r a l l y p e c u l i a r ways o f u n d o i n g i n t e r * , dependency networks reduce the c o g n i t i v e and/or a f f e c t i v e aspects of previously established relationships. They m i n i m i z e t h e assumed d i s r u p t i v e e f f e c t s o f d i s s o l u t i o n s . These  authors, then, agree  none o f them d e s c r i b e d Erich  i t i n  Lindemann  tence of anticipatory  that  this  exist,  but  detail.  (1944:106)  grief  syndrome does  and  first  described  i d e n t i f i e d the i t this  exis-  way:  The p a t i e n t i s so c o n c e r n e d w i t h h e r a d j u s t m e n t a f t e r t h e p o t e n t i a l d e a t h o f f a t h e r o r son t h a t she goes through a l lthe phases o f g r i e f — d e p r e s s i o n , heightened preoccupation with the departed, a review of a l l the forms o f d e a t h w h i c h m i g h t b e f a l l h i m and a n t i c i p a t i o n o f t h e modes o f r e a d j u s t m e n t w h i c h m i g h t be necessitated by i t . This  description  provides the  framework  for this  study.  -  While more d e t a i l , reactions he  be  assumed  i n anticipatory  described i n bereaved  digestive  guilt with  symptoms.  feelings  and  from h i s statement g r i e f would  He  symptoms o f g r i e f  He  of energy, also  mentioned  Most o f these  (1944) was  self-reproach."  second  that  characteristic  this  hypersensitivity,  For those  the need  i t was  g i v e up  the It  Wiener  T h e s e symptoms w o u l d  sad-  thus  anticipating  identified  preoccupation i s with the anticipating  preoccupation i s the patient  discussed  loss,  the  one.  the deceased.  their  are a s s o c i a t e d  by  Lindemann  of heightened preoccupation with the departed.  the bereaved, of  irritability,  anorexia, weight  "insomnia,  of depression i n individuals  The  respirations  include:  be  a loved  somatic  (1970:24) t h e d e p r e s s i v e  and  of  those  According to Peretz,  ness, weeping  loss  for this  a method which lost  in  the  approximate  sighing  to concentrate, restlessness,  indicative  that  d e s c r i b e d anger,  restlessness.  depression.  inability  describe these reactions  individuals.  symptoms o f e x h a u s t i o n , l a c k and  -  Lindemann d i d not  i t may  seen  5  the  himself.  image  and  loss,  t h e -focus  Freud  intense preoccupation, enabled  the  For  individual  memories  (1916)  of  first  indicating to  eventually  person.  i s possible  (1970) f o u n d  f o r p r e o c c u p a t i o n t o t a k e many  that parents of  fatally  i l l children  forms. usually  -  6  -  a t t e m p t t o become h i g h l y k n o w l e d g e a b l e dition an  and s t a t e d  that  this  search  a l l consuming preoccupation.  central  focus o f the parents'  about t h e i r  f o r information  The c h i l d lives  with  taking  that  i s on h i s mind c o n s t a n t l y  interest  i n anything The  reviewing This, the  with the  Fulton  death before  ipatory  This  last  behave  cope w i t h  i s part  thoughts  rehearse  of the antic-  Family  members  may  of the patient's  occurrence.  c h a r a c t e r i s t i c o f a n t i c i p a t o r y g r i e f mentioned  L i n d e m a n n was a n t i c i p a t i o n o f t h e modes o f r e a d j u s t m e n t  would be n e c e s s i t a t e d  by t h e death.  often  that  L i n d e m a n n * s s a m p l e was  p o s e d o f f a m i l i e s o f s e r v i c e men who h a d d e p a r t e d mentioned that  faced  a b o u t when t h e  at the time  the actual  loved  families  members w i l l  a s how h e may d i e .  a b o u t how t h e y w i l l  The  little  the individual.  the death o f a  rehearsal  g r i e f s y n d r o m e a n d may i n c l u d e  think  he has  t o t h e bereaved's need t o review  o f one o f t h e i r  i toccurs.  d e a t h o r how t h e y w i l l  by  that might b e f a l l  (1972:230) c o n c l u d e d t h a t  illness  p a t i e n t may d i e a s w e l l also  and t h a t  find  Lindemann mentioned i s  up t o and s u r r o u n d i n g  and F u l t o n  the terminal  s i b l i n g s and  T h e i n d i v i d u a l may  characteristic that  seem, c o r r e s p o n d s  leading  o f t e n becomes  not related t o the patient.  t h e forms o f death  i t would  events  one.  third  second place.  con-  sometimes becomes t h e  other  responsibilities the patient  child's  the family had readjusted  so  com-  f o rwar and he thoroughly  while he  t h e s o l d i e r was away, t h a t  he was n o t a c c e p t e d b a c k  returned. The  differ  modes o f r e a d j u s t m e n t  necessity  of taking  and  may t h i n k  about remarriage.  cial  t o be considered  f o r e a c h member o f t h e f a m i l y .  the  problem that  family's  would  The s p o u s e may  on t h e r e s p o n s i b i l i t i e s  W i v e s may c o n s i d e r  the finan-  would be p r e c i p i t a t e d by t h e l o s s o f t h e  bread winner.  cope w i t h her  these  A l l members m i g h t v i s u a l i z e c h a n g e s i n  changes.  Each considers  things  o f the bereaved  loss.  Aldrich  (1975)  between conventional  a r e some  inite  differences.  He a l s o n o t e d of grief:  He m e n t i o n e d t h a t  decelerates  anticipatory grief will  endpoint with  there  parallels  g r i e f and a n t i c i p a t o r y g r i e f b u t i d e n t i f i e d  grief generally  t h e two t y p e s  between t h er e -  agreed that  ventional  of  the similarities  o f those a n t i c i p a t i n g  important  comes c l o s e r .  c e r t a i n l y means  and t h e r e a c t i o n s  some v e r y  that  other  t o d i f f e r e n t people.  Lindemann s t r e s s e d actions  might  these needs i n h i s o r  own w a y a s t h e l o s s o f a s i g n i f i c a n t  different  consider  of the patient  f a m i l y r e l a t i o n s h i p s and a t t e m p t t o d e t e r m i n e how t h e y  a  when  with  time,  con-  i ti s possible  accelerate  as t h e expected  an o b v i o u s  difference i n the endpoint  while  loss  a n t i c i p a t o r y g r i e f has a  the occurrence of the loss,  g r i e f may b e i n d e f i n i t e l y  while  prolonged.  def-  conventional  -  Aldrich grief while Thus, hope  observed  8  -  t h a t hope c a n accompany a n t i c i p a t o r y  i t u s u a l l y does n o t accompany c o n v e n t i o n a l and a n t i c i p a t o r y g r i e f  are n o t seen  as  grief.  mutually  exclusive. As feelings  i n conventional  grief,  o f ambivalence toward the object  f e e l i n g s may p r e c i p i t a t e g u i l t perception his of  of the vulnerability  thoughts,  grief this of  (1974:115)  the fears  He may  feel  that  "there  i s no formula  cancer.  o f t h e stage  expect  that  Anticipatory  of the disease."  t o s e e t h e above  I f  manifestations  i n t h e f a m i l y members o f p a t i e n t s  diagnosed  cancer.  Statement If  and Purpose o f T h i s  f a m i l y members  r e a c t i o n s when c a n c e r  order  of the patient.  associated with  i s s o , t h e n one w o u l d  Problem  that  These  i n t h e mourner because o fh i s  stated  i s inevitable regardless  anticipatory grief  with  of h i s grief.  disease.  Robbins minimize  experience  w o r d s o r a c t i o n s h a v e some i n f l u e n c e o n t h e o u t c o m e  the patient's  will  t h e m o u r n e r may  t o provide  these  guidance necessary  are experiencing  i s diagnosed  nurses develop greater  Study  i n a loved  awareness o f these  individuals with  t o help  anticipatory grief one, i t i s e s s e n t i a l manifestations i n  the type  them cope w i t h  this  o f support  threatened  and loss  and  continue t o relate  remaining days, The diagnosis in  purpose  o f cancer  concept  the patient  d u r i n gh i s  months o r y e a r s .  the patient's  valid  t o and support  of this  s t u d y was t o d e t e r m i n e  precipitates  an a n t i c i p a t o r y  i f the  grief  f a m i l y members and t o d e t e r m i n e  reaction  i ft h i s  t o c o n s i d e r when p l a n n i n g n u r s i n g c a r e  i s a  f o r these  individuals. The 1.  s t u d y was d e s i g n e d  When c a n c e r  i s diagnosed,  bers  or friends  with  the patient,  t o answer two q u e s t i o n s :  do t h e p a t i e n t ' s  close  experience depression, heightened anticipation  would be n e c e s s i t a t e d  f a m i l y mem-  preoccupation  o f t h e modes o f r e a d j u s t m e n t  by t h e patient's death  and thoughts  that  about  how t h e p a t i e n t may d i e ? 2. W h a t a r e some o f t h e o t h e r common f e e l i n g s i e n c e d b y f a m i l y m e m b e r s or.' f r i e n d s patients?  or reactions  of recently  diagnosed  expercancer  Chapter  LITERATURE  2  REVIEW  A n t i c i p a t o r y g r i e f i s n o t a new t e r m i n p r o f e s s i o n a l literature. 1944. a  I n f a c t , i t was  However,  few authors  of est of  this  i thas r e c e n t l y  and r e s e a r c h e r s  concept.  While  i n d i v i d u a l s faced  these reactions. which discuss  aspects  suggested that  with  This  t o t h e foreground and  explored  an e x p e c t e d  various  explicitly  a s t h o s e who  a l s o be  two s e t s  their  inter-  labelling  focus on s e l e c t e d  experience  l o s s , some o f t h e r e l e v a n t  dimensions  the reactions  loss without  of anticipatory grief.  i n d i v i d u a l s who  Recently  In that  publications Lindemann  anticipatory grief experience g r i e f  literature  dealing  after  with  discussed.  of researchers  have  attempted t o  i f a n t i c i p a t o r y g r i e f has any e f f e c t on an e l d e r l y  individual's Clayton,  have  chapter w i l l  grief reaction w i l l  determine  returned  others have described  p a s s t h r o u g h t h e same s t a g e s  the  used by E r i c h Lindemann i n  some h a v e s t a t e d  i n anticipatory grief,  an a c t u a l  first  adjustment t o t h e subsequent  Halikas,  Maurice  and R o b i n s  loss  of a  spouse.  (1973:47) a t t e m p t e d t o  determine i f  the the  ...it easier length  i s true that the longer the r e l a t i v e l i v e s , i t i s t o accept t h e d e a t h , and r e g a r d l e s s o f of the i l l n e s s , i fanticipatory g r i e f occurs  -  10  -  -  11  -  d o e s i t make t h e p o s t - m o r t e m m o u r n i n g l e s s or s h o r t e r or suppress i t a l t o g e t h e r . These r e s e a r c h e r s of  defined  anticipatory  f o u r o r more d e p r e s s i v e  (one  month a f t e r  the  symptoms and  death  of their  death of  of  spouse.  than  who  lived  depressive ienced  five  anticipatory  were s t i l l had  not  grief  experienced not  to the  and  Of  was  concluded  longer  less  which  the interview. after  the frequency  illness  s i x months  a tendency  to  experience  more  subjects nineteen  as  d e f i n e d by  the  authors.  number o f t h e s e  that the of  One  This  duration of  symptoms and  nineteen those  difference,  bereavement.  illness  that  expermonth  r e a c t i o n compared t o grief.  (but  for  eighty-one  larger  was  experienced  the  immediate post-mortem depression that  than  widowers  identify  frequency  illness  and  that the  t h i r t e e n months a f t e r  prevalence  i s unfortunate  of  however,  anticipatory  present  widows  found  to the  experiencing a depressive  These authors related  the  a significantly  h o w e v e r , was  It  similar  T h e r e was,  through  symptoms.  post-mortem,  grief  days).  time  constellation  s u b j e c t s whose spouses'  s u b j e c t s whose mate's i l l n e s s  those  who  by  s i x m o n t h s was  longer than  asked  a  s u b j e c t s t h i r t e e n months  These r e s e a r c h e r s  symptoms e x p e r i e n c e d  longer by  the  as  spouse) t o  symptoms t h e y w e r e e x p e r i e n c i n g a t t h e They a l s o i n t e r v i e w e d the  grief  intense  i s  not  anticipatory  are . p o s i t i v e l y  a r e t r o s p e c t i v e d e s i g n was  related.  necessary,  as  - 12  it  i s possible  ate  t h a t many o f t h e s p o u s e s  account of t h e i r  illness,  and  this  d i d not  mood o v e r t h e e n t i r e  may  have had  Gerber, Rusalem, felt  -  some e f f e c t  Hannon, B a t t i n g  give  period on  accur-  of their  the  and  an  mate's  results.  Arkin  (1975:225)  that: A n t i c i p a t o r y g r i e f i s almost always p r e s e n t , i n some f o r m , d u r i n g a l o n g t e r m d e b i l i t a t i n g i l l n e s s a n d one h a s t o assume t h a t i n d i f f e r e n t ways most b e r e a v e d to-be w i l l attempt t o u t i l i z e t h i s p e r i o d t o prepare f o r the future.  The  purpose  tive the  of their  i n v e s t i g a t i o n was  value of anticipatory aged  bereaved.  s i x months  divided  two  term had  illness a chronic  after  groups:  (less  t h a n two  illness.  they  scrutinized  than  loss.  These  months)  and  o f t h e s e two  the chronic  illness  bereaved  groups.  They c o n c l u d e d t h a t  grief  a negative effect  for health  spouse.  professionals  of a  group more c l o s e l y , illness  of a shorter  lengthy exposure  to  on t h e p o s t - b e r e a v e m e n t  short had  differ-  However,  of a lengthy chronic  illness.  of the surviving  died  were  t h o s e whose spouse  s i x months) d i d worse t h a n t h e bereaved  has  had  subjects  These r e s e a r c h e r s found l i t t l e  i n medical adjustment  t h e aged  their  of  from e i g h t y - o n e widows  t h o s e whose spouse  ence  found t h a t  on t h e m e d i c a l a d j u s t m e n t  Data were c o l l e c t e d  and widowers into  grief  to explore the preventa-  when they (more chronic  anticipatory adjustment  T h e s e c o n c l u s i o n s make i t i m p e r a t i v e t o l e a r n more about  anticipatory  grief  -  and  how  i t manifests  it,  nor  did they  13  itself.  attempt to  -  These r e s e a r c h e r s describe  i t , they  d i d not  define  assumed t h a t  i t  exists. While "anticipatory  t h e s e two  grief",  describe  an  actually  labelling  done by two  and  this  dying  an  The  expected  diseases  and  She  term  studies loss  Kubler-Ross  imminent death.  process:  find  b e s t known o f  i n 1969.  terminal  used the  which  without these  was  observed  documented  outlined  d e n i a l , anger, b a r g a i n i n g ,  five  their stages  depression  acceptance.  learning  that  by  the  first  by  the  "no,  seeks  During  he  to her,  i s dying  distinct not  me"  a patient's  i s shock  a t t i t u d e and  this  second  period,  stage of the  to  say  discomfort.  "Why  me?"  or  the  and  the  initial  reaction  numbness, This  prognosis process  health  is  by  the  at  of  t o blame those  patient  around him  sources.  anger.  family,  professions.  closely  characterized  from s e v e r a l  i s that  l a s h out  to  followed  stage  i s epitomized  p a t i e n t may  e s p e c i a l l y a t members o f  heard  and  stage—denial.  a different diagnosis The  and  reaction.  with  toward t h e i r  According  who  researchers  individual's reaction to  hundred p a t i e n t s  the  of  i t i s m o r e common t o  Elisabeth Kubler-Ross  reactions of  sets  He for  friends may his  be  -  A third patients. with  During  14  -  s t a g e , k n o w n a s b a r g a i n i n g , i s s e e n i n manythis  stage  t h e p a t i e n t may  bargain with  t h e d o c t o r s o r w i t h h i m s e l f f o r more t i m e .  request  i s fulfilled, The  the patient increase  fourth  can  no  another  will  this  l o n g e r deny h i s c o n d i t i o n because o f loss  between r e a c t i v e  need t o express  stage to the This  Ross  (1969:112) as  "neither devoid her  depressed  of  patients  clarified  this  of  a body p a r t .  reached  angry  their  was  development  the  through  d e s c r i b e d by the patient  about h i s f a t e . . . . I t  these  and  described  i s t o work  indicated  five and  is a  Kubleri s stage  that the majority of  stage before t h e i r  describing  loss  acceptance.  during which  Kubler-Ross this  i f he  acceptance,  that state nor  sorrow  She  an  Kubler-Ross  depression for a past  stage of  stage,  feeling."  After 138)  final  last  one  i t s place.  preparatory depression f o r impending losses. patient's  as  s t a g e , d e p r e s s i o n , i s s e e n most o f t e n when  i n h i s symptoms o r t h e  differentiated  take  Often  God,  death.  stages, Kubler-Ross use:  M  (1969:  Th  T h e s e means ( p a t i e n t s ' c o p i n g m e c h a n i s m s ) w i l l l a s t f o r d i f f e r e n t p e r i o d s o f t i m e and w i l l r e p l a c e each other o r e x i s t at times s i d e by s i d e . The one thing that u s u a l l y p e r s i s t s through a l l these stages i s hope. This  i s an  sustain  important  aspect  of patients'  reaction  them when e v e r y t h i n g e l s e becomes a  and  strain.  tends  to  - 15 Kubler-Ross  (1969:139)  -  added:  In a sense i t i s a r a t i o n a l i z a t i o n f o r t h e i r suffering at times; f o r others i t remains a form of temporary but needed d e n i a l . . . . ( A l l p a t i e n t s ) maint a i n e d a l i t t l e b i t o f i t and were n o u r i s h e d b y i t i n especially d i f f i c u l t times. This  i s a crucial  Madeleine cussion  part of a dying patient's reaction.  Clemence V a i l l o t  (1970:271) e l a b o r a t e d on t h i s  and i m p l i e d t h a t hope  a person's  response  Sister  i s often a significant  dis-  factor i n  to his illness:  Hope i s o p p o s e d t o d e s p a i r . T h e o n e who d e s p a i r s g i v e s up....Any s i t u a t i o n j u s t i f y i n g hope i s by d e f i n i t i o n , n o t amenable t o s t r i c t l y o r d i n a r y means, a n d h o p e s e t s i t s g o a l s b e y o n d mere human previsions. She  s t r e s s e d the importance  their  patients i n order Kubler-Ross  she  t h e o r y h a s become w i d e l y  teristics is  to inspire  m a i n t a i n i n g hope f o r  hope  i n them.  opened up t h e area  stimulated interest  Many o t h e r  of nurses'  i n these  i f not t o t a l l y  o f t h e d y i n g p a t i e n t b u t t h e most  q u e s t i o n o f t e n asked  Kubler-Ross  stage  common  charac-  controversy  h i s awareness.  much does t h e p a t i e n t know".  s t a t e d t h a t a l l t h e p a t i e n t s i n h e r s t u d y knew  were  dying.  On  that  "No  can r e a l l y  one  i s "how  dying;  understood.  h a v e commented o n t h e many  the question o f the patient's denial versus  The  of the  p a t i e n t s and h e r f i v e  accepted  authors  of care  t h e other hand, ever  Shneidman  know he  (1973:4)  they  maintained  i s about t o d i e because  -  there  i s always  Hutschnecker discount that  (1959:238) agreed w i t h  a c c i d e n t s and  homicide/  themselves  denial. denial  Weisman of  Saunders  related (1972)  facts, denial (1971)  deny and  spoke  She  remains,  given the  t o awareness that  that  the  the patient, family.  She  stages of  our p a t i e n t s . " her  from  certain are  statements  schools of  thought.  and  denial  use  of  of  e x i s t s more o r  said the patients like  freedom  cannot  t o t a l k about  t o do  so.  While  denial  and  bear  of  denial:  extinction.  less too  wish  dependmuch  the weather,  they  the controversy awareness  are  not  exclusive.  different  in  These  there are degrees  denial  W h i l e most p u b l i c a t i o n s ly with  almost  i s the patient's  of implications  most authors agreeflthat  mutually  for  i t s e e m s t o me  " I f we  most p e o p l e know when t h e y  wrote  so i f t h e y would  s h o u l d be  denial."  of the need t o r e s p e c t the p a t i e n t ' s  p o i n t e d out  on t h e day.  reality,  to  of  Kubler-Ross:  t h e c o n t r o v e r s y between t h e s e two Closely  ing  presence  t o d i e and most o f them a r e r e a d y . "  typify  to  -  the intermittent  deep w i t h i n  going  16  discussion  a large  Kubler-Ross stated  on  devoted  (1969:168)  adjustment  d e a t h and one  dying deal  chapter of her  " F a m i l y members  book  undergo  s i m i l a r t o t h e ones d e s c r i b e d  Unfortunately, i t i s d i f f i c u l t whether  direct-  the d a t a were gathered  sample s i m i l a r t o her p a t i e n t  to  determine  systematically  sample or  haphazardly  -  from  17 -  f a m i l y members s h e met b y c h a n c e .  She d e s c r i b e d  members p r o g r e s s i n g t h r o u g h t h e same s t a g e s and  claimed that  less  unbearable  t h e more g r i e f  and  Gerber  t h e need  evidence  that  their  prior  t o t h e death nurses  the needs o f f a m i l i e s out  t o "determine  i l l  feels  the  impending  Her  s a m p l e was drawn  had  been determined  and  included  that  their  death  of dying patients.  as w e l l  as t h e a c t u a l  spouses  The spouses  mates' deaths.  needs.  expressed  mate.  Hampe  (1975:3) s e t  and h e l p h i m cope w i t h death  o f h i s mate."  staff  who l i v e d  within  one  The needs i d e n t i f i e d  eight  needs  i nthe literature;  mates i l l  hundred  c e n t e r where t h e p a t i e n t s  Hampe i d e n t i f i e d  t h e subjects t o determine  whose  t o be t e r m i n a l l y  were i n t e r v i e w e d p r i o r  b e e n shown t o be s i g n i f i c a n t viewed  studies  t h e p o p u l a t i o n of' s p o u s e s  by the medical  only those  and t h e r e i s no  whose mate i s t e r m i n a l l y  r e c o g n i z e h i s needs  from  Kubler-Ross  h a v e b e g u n t o show an i n t e r e s t i n  o f the university medical  hospitalized.  of their  whether t h e spouse  nurses  statement  i t does not.  any o f t h e s u b j e c t s i n these  feelings  this  o f C l a y t o n e t a l (1973)  f o rexpression o f t h e g r i e f  Recently,  miles  While  with the findings  e t a l (1975), e s s e n t i a l l y  stressed  as t h e p a t i e n t  i s expressed before death, the  i t becomes a f t e r w a r d .  may seem t o c o n f l i c t  family  were  t o and a f t e r she f e l t had  she then  inter-  i f they had perceived these  were:  t o be w i t h t h e d y i n g  person,  - 18 -  to  feel  assured ed  h e l p f u l and o f a s s i s t a n c e o f t h e comfort  support and  death,  from  comfort  spouses  seven  following event It  from  the health  a l leight  prior needs  t h e y were  their  Of t h e twenty-seven deaths,  E i g h t e e n spouses  twenty-five  perception  were  that  of their  often  e m o t i o n a l needs o f t h e p a t i e n t  are those  the death  needs o r concerns.  generally  felt  r e s p o n s i b i l i t y was t o t h e d y i n g p a t i e n t  sample.  relating  and spouse.  five  interviewed  a l t h o u g h these needs were  n o t c o n s i s t e n t l y met f o r t h i s  spouses  support  and t h e o t h e r two i d e n t i f i e d  that  were met l e a s t  f i n d i n g was t h a t  mates'  comfort and  acceptance,  m a t e s ' d e a t h s a n d Hampe f o u n d  d i d not alter  needs which  t o receive  professionals.  needs r e s p e c t i v e l y . their  inform-  t o be aware o f t h e  emotions,  to their  t o be  t o be kept  f a m i l y members, a n d t o r e c e i v e  i s important t o note  fied,  condition,  to ventilate  interviewed  identified and  o f t h e dying person,  about t h e d y i n g person's  impending  t o t h e dying person,  identiThose  t ot h e  A not unexpected  that  t h e nurses•  and t h a t  primary  t h e y were t o o  busy t o help t h e family. In Hampe  addition t o the eight  (1975:127) found  t h e r e were  expressed by t h e spouses:  needs p r e v i o u s l y another  eight  identified,  areas  o f concern  -  19  -  (1) n e e d f o r r e l i g i o u s s u p p o r t (2) c o n c e r n about a n t i c i p a t o r y g r i e f (3) m a i n t e n a n c e o f h o p e f o r the spouse's s u r v i v a l (4) c o n c e r n a b o u t l o n e l i n e s s and c o m p a n i o n s h i p (5) c o n c e r n f o r c o n t i n u i t y b y h e a l t h p r o f e s s i o n a l s i n p e r c e i v i n g and m e e t i n g t h e n e e d s o f t h e p a t i e n t and s p o u s e (6) c o n c e r n about ambivalent f e e l i n g s i n r e g a r d t o the treatment and c a r e o f t h e m a t e (7) c o n f i d e n c e i n the h e a l t h professionals (8) c o n c e r n f o r p e r s o n a l d a i l y p r o b l e m s . While the due  generalizability  to her  use  implications provides may  H a m p e ' s f i n d i n g s may  a non-representative  for nursing  a baseline  sample, t h i s  service, education  from which  be  further  and  studies  limited  study  has  research, in this  and  area  develop. In  studied loved  fact,  ones t o  ones.  Friehofer  twenty-five  greatest  the  of  of  comfort  Felton  (1976) h a v e  terminally i l l  determine nursing  support,  Using  pairs of  and  and  since  patients  behaviours which o f f e r  ease of  a Q-sort methodology,  suffering to  the  these researchers  than the  s p o u s e and  behaviours which authors  (1976:336)  opinions  of  grieving  i s t o be  on  the  be  who  the  least desired  exclusively to  assumed t h a t  experts  assumption can values  applied  that  feel  allowed  to  their  that  the  were  spouses.  priority  emotions.  accepted, however, the  responses of  the  findings negated  a high  express  the  subjects  need  Before  influence must be  their the loved  found  most d e s i r a b l e b e h a v i o u r s were t h o s e r e l a t e d t o  rather  and  that  patient those The the during this  of s o c i e t a l  considered.  -  When a s p o u s e o r l o v e d acceptable  t o express  patient's. mission  to  i n fact  support  probable,  their  own n e e d s .  that while  allotted  change.  to identify  that particular  Also,  the patient  a behaviour  peri ti s continue  i stheir r e Perhaps i f  f o r f a m i l y members, t h e i r  I t would be l e s s  behaviour  t ot h e  that health professionals  t h e f a m i l y m u s t c o p e o n i t s own.  might  considered  need t o r e c e i v e e x p l i c i t  and d i s c u s s  time were s p e c i f i c a l l y  uals  i t may n o t b e  o n e ' s own n e e d s i n p r e f e r e n c e  the perception  sponsibility,  ceptions  one i s d y i n g ,  Perhaps r e l a t i v e s  to identify  possible,  20 -  as h e l p f u l  difficult i f they  per-  for individ-  had  experienced  i n t h e n u r s e s w i t h whom t h e y  had had  contact. The in  research  reaction tinct  patient with  about t h e d y i n g  t o the diagnosis  stages  reactions  i nthe patient.  the pre-diagnosis,  the  advanced o r t e r m i n a l  i s t h e one most o f t e n  process.  o f cancer,  i n the disease  are  1970;  cancer  process The t h r e e  the diagnosis stage.  When d e s c r i b i n g a p a t i e n t many a u t h o r s which  focuses  mentioned here discussed  on t h e f i n a l  as i t c o r r e s p o n d s  m a t e r i a l on t h e dying  elicit  stages  specify  dis-  different  usually  and treatment  described and f i n a l l y  (Abrams 1 9 6 6 ; Day 1 9 6 6 ; S c h m a l  Creech 1975 and Bahnson 1975).  literature  studied  stage,  W h i l e most o f t h e r e c e n t i t will  closely patient.  be o n l y  briefly  to the previously  The delay  pre-diagnosis  i n seeking  Bahnson 1975). for  this  diagnosis Schmale  21  -  stage  i s often  (Shands e t  c h a r a c t e r i z e d by-  a l 1951;  Schmale  (1971:92) o u t l i n e s the  basic  1971;  reasons  delay:  1. ... T h e p a t i e n t may l a b e l s u c h s y m p t o m s , a s w e i g h t l o s s , a n o r e x i a , f a t i g u e , d y s p n e a , m u s c l e and b o n e a c h e s as r e l a t e d t o o v e r w o r k , d e p r e s s i o n , aging, trauma, n e u r a l g i a , e t c . 2. P r e o c c u p a t i o n w i t h w o r k , i n t e r p e r s o n a l r e l a t i o n s h i p s and o t h e r a c t i v i t i e s may lead to a decrease i n perception or a disregard for b o d i l y changes. 3. A n x i e t y o r f e a r o v e r t h e p o s s i b i l i t y of a diagnosis of cancer or i t s treatment... may b e c o m e s o t h r e a t e n i n g t h a t t h e c o n s c i o u s awareness o f t h e n e e d f o r t r e a t m e n t w i l l be t e m p o r a r i l y b l o c k e d out or ignored. 4. C a n c e r s i n v o l v i n g t h e b r e a s t and g e n i t o - u r i n a r y t r a c t may b e n e g l e c t e d b e c a u s e o f a n e m b a r r a s s m e n t o r shame w h i c h makes t h e i n d i v i d u a l unw i l l i n g t o be examined i n t h e s e areas. These thoughts  are  supported  In d e s c r i b i n g the diagnostic lem  1969;  of  "when a n d  what t o t e l l  be  informed  Bahnson 1975; these  are  always w i l l i n g  hesitates  to  the  the  authors  (as w e l l as to discuss  explicitly:  communicate r e a d i l y  the  most w i d e l y  authors  C r e e c h 1975;  Most of  (1966:317) s a i d t h i s  of  authors  second phase of  stage,  should  not  other  treatment  i s a g r e e m e n t among t h e  family  the  and  i s that  there  by  the  on  the  process,  patient's diagnosis  others) the  and  and  " i n cancer about the  the  his  (Francis Dunthy  assumed t h a t  diagnosis  prob-  Generally,  patient  Rosenbaum 1975  the  discussed  patient".  that the  subject.  1976).  physicians  openly.  Abrams  physician  diagnosis  as he  does  in  other medical  fortable  i n this The  as a n x i e t y 1975) for  situations,  -  p r i m a r i l y b e c a u s e he  patient's initial  reaction i s usually described  (Shands e t a l 1951; Day  there  i s uncom-  area."  y e t , Abrams  hope,  22  (1966:318)  i s little  1966;  found  reason  that  F r a n c i s 1969; "When t h e r e  f o r subterfuge,  i s  be  lessened by d i r e c t  (1966:318) "direct  indicated  and t r u t h f u l  tenance o f good and an a b i l i t y lasts  as l o n g  effective  observed  that this  as a c t i v e  i n controlling  "Why  i s given  Bahnson  t h a t anger or h o s t i l i t y during this  me?"  disease  stage.  The  depression  that  cancer  (1975)  This  stage  disease.  and C r e e c h  (1975)  r e a c t i o n commonly  anger i s s i m i l a r  (1969) and  hostility  to  that  frequently manifests  itself  questions.  process  that  and  and i s p r o v i n g  i s another  Another r e a c t i o n sometimes the  i n p h y s i c i a n s , main-  i f not e r a d i c a t i n g the  (1971),  Abrams  i s c h a r a c t e r i z e d by  a healthy equilibrium."  treatment  Anxieties  asked."  absence o f depression  to maintain  described by Kubler-Ross with  stage  communication, f a i t h  relations,  Klagsburn indicated  answers t o q u e s t i o n s  reason  little  a n x i e t y on t h e p a r t o f t h e p a t i e n t o r t h e p h y s i c i a n . can  Bahnson  i s depression.  i s a stage  i s no  related Francis  to this (1969)  stage  indicated  a s s o c i a t e d w i t h most d i s e a s e s  different.  Shands  of  e t a l (1951:1167)  and supported  this  assumption  almost  identified  regression,  al  1969;  described  by  i s often and  subjects  Kubler-Ross.  regard  were dying  reactions  to  dying  the of and  1969)  S c h m a l e 1971)  enters  reactions  said that  (Francis  reactions/ dependency,  and  paranoid  1951).  patient  his  lesions  depression."  most commonly m e n t i o n e d  the  further curative treatment  agreed that  illness  the  Francis  (Shands e t When t h e  (when no  are  include  a l 1951;  reactions  "It  develop malignant  i n v a r i a b l y s h o w some d e g r e e o f  (Shands e t  ally  -  s t a t i n g " p a t i e n t s who  While these others  23  In  are  terminal  i s prescribed) typically  fact, equate  two  synonymous."  cancer,  so  reactions  the  Kubler-Ross  people as  stage of i t is  to the  gener-  same as  those  (1969:29)  a malignancy with Many o f  attempts to  cancer  said  terminal  Kubler-Ross  1  d i s t i n g u i s h between  disease  seem  virtually  impossible. Gullo, statement.  Cherico,  prospect  of  ing  illness,  death  the an  Shadick might dispute  They d i s t i n g u i s h e d between t h e  the  outcomes;  and  dying  i n the  investigate  the  stated  i s often  (1974:53)  perceived  aware t e r m i n a l  p r o b a b l e outcome." exploratory  and  the  experience of  as  patient/  B a s e d on  study with  process  this  one  "in a of  death  of  the  last  dying  and  life-threatenseveral  possible  i s recognized  premise they c a r r i e d  following objectives: and  this  response to  1.  life  as out  to threat-  - 24 ening i l l n e s s i n t h e adult cancer whether response in  to life  terms o f a continuum  exist  i n t h e response  (a) d o t h e y d i f f e r as  to life  o f t h e apparent  theory,  3. t o f i n d  experienced by the dying  differences  a n d s i m i l a r i t i e s , a n d 4. t o  t h e i s s u e o f g e n e r a l i z e d o r predominant  style  endure throughout  The  response  the illness.  gathered  the data  fortheir  extensive  interviews with five  patients  and members o f  immediate  families.  response  difficult  present  While  patterns exist  significant  size.  authors  ways  from  their  and thus  findings  study  suggested  through their  that  some  a n d t h a t t h e s e p a t t e r n s d i f f e r i n some  those  described by Kubler-Ross,  t o generalize these  However, t h e y  patient  (b) i f t h e y d i f f e r , w h a t i s t h e  investigate which  i f stages  t h r e a t e n i n g i l l n e s s ; and i f s o ,  stages  described by Kubler-Ross  nature  2. t o i n v e s t i g a t e  t h r e a t e n i n g i l l n e s s can be d e s c r i b e d or stage  from  patient,  findings  identified  paved t h e way  i t i s  due t o t h e s m a l l  sample  t h a t some d i f f e r e n c e s m a y f o r further  be  research i n this  area. Most to and  authors  describe the patient's  a d i a g n o s i s of' c a n c e r .  Few d i s c u s s t h e f a m i l y ' s  o f t h o s e who d o , m o s t h a v e  diagnosis  o f leukemia  studies  studied parents  i n one o f t h e i r  pauci.tyy o f l i t e r a t u r e , on these parents  emotional  1  children.  response  response  reaction  to a  Because o f t h i s  i ti s imperative t o review the available carefully.  In the early studied  y e a r s who  had  one  of convenience,  for  the  study.  ages  and  e i g h t e e n months  w i t h leukemia.  at a s p e c i f i c  The  center during the  t h e r e was  no  other  control  during the  child's  Thus,  first  over  the  some was  was  b e g i n n i n g t r e a t m e n t , w h i l e f o r o t h e r s i t was  used  because of  This  d i s c r e p a n c y makes i t d i f f i c u l t and  failure  the  to their  fact  t h a t some o f t h e  events  study.  that took The  data  p l a c e up  atically  direct  for  of the mothers  each  information'. the  schedules:  the  this  i s based  on  as  the death  as  forms o f  an  toward  being  treatment. between  important  limita-  design i s  the of  previously. progressed,  a l l o w e d them t o  c o m p l e t i n g gaps  difficulties  child  he sub-  were  p r o v i d i n g comparable  specific of the  interview  the mother's r e c a l l  schedules which  as w e l l  period  during a  t h a t as t h e p r o j e c t  i n t e r v i e w toward  child's  the time  drugs  of this  t o n i n e t e e n months  They i d e n t i f i e d 1.  allotted  t o compare t h e d a t a  limitation  indicated  interview  to other  identified  Another  authors  they developed  t o respond  authors  tion  time  h o s p i t a l i z a t i o n when  h o s p i t a l i z a t i o n when p r e v i o u s l y u n t r i e d  subjects  children  initial  for  to  sample,  a l l interviews occurred during the  when t h e m o t h e r s w e r e i n t e r v i e w e d .  sequent  Sutherland  i n c l u d e d o n l y t h o s e mothers whose  While  hospitalization,  children  been diagnosed  were h o s p i t a l i z e d  -  1950's Bozeman, O r b a c h  the mothers of twenty  six  25  resulted  in  systemdata in  completing  i n termination  of  contact;  during  2. t h e m o t h e r ' s r e s i s t a n c e  the c r i t i c a l  condition  e n c o u n t e r e d need on the p a r t or to discuss  t a l i z a t i o n was tion  interviewer While  priority  that  as w e l l  belief,  followed  cations  of the diagnosis;  illness  personal  by  the other.  relationships needs. services  as i t  while  the schedule.  have  and n u r s i n g  implications practice.  reaction to the diagnosis  for their  was  i t o r deny t h e  this  frequently  and  child's illness.  anxiety  implideny  assumed  i n t h e m o t h e r s and t h e  frequently  ones t o d e a l  expressed  dis-  Hospitaliza-  intensifying that  period, the mothers u t i l i z e d  o r d e v e l o p e d new  The m o s t  guide  i s l i m i t e d by t h e sample  as m e d i c a l  t h e r e a c t i o n o f one During  bene-  none o f t h e mothers a t t e m p t e d t o  precipitated separation  children with  study  Many m o t h e r s e x p r e s s e d g u i l t  responsibility  informa-  on c o m p l e t i n g t h e  an a t t e m p t t o d i s p r o v e  itself.  hospi-  detailed  the findings nevertheless  The m o t h e r ' s i n i t i a l  of  from  have been l o s t  attempted t o concentrate  and d e s i g n ,  frequently-  I t m i g h t have b e e n more  i m p o r t a n t d a t a may  further research  tion  problems a r i s i n g  over the h i g h l y  g e n e r a l i z a t i o n from t h i s  selection  the  a n d 3. t h e  t o the study t o have used a l e s s s t r u c t u r e d  possible  for  practical  c a l l e d f o r by the schedule.  ficial is  given  of the child;  interviewing  o f the mother t o v e n t i l a t e h e r  s  feelings  t o repeated  with  needs were  s u c h as t r a n s p o r t a t i o n o r h o u s e k e e p i n g ,  their  existing most  acute  for tangible f o r temporary  escape ing  from  loss,  the  and In  of  Health  for emotional  conducted  (NIH)  by  (Friedman  the  in  comparable  lived  d i s e a s e by  child's  stages.  Of  some d i s t a n c e f r o m  the h o s p i t a l time  the  the  c l o s e by  and  the nurses  was  parents  and on  their  parents two  seen  an  weeks w h i l e t h e  periods  forty-six and  the  filled  for  or  were  to the  NIH  diagnosis likely  subjects, thirty-five to  a ward  a portion  of  other eleven subjects  of the lived  study.  daily  on  setting  were i n t e r v i e w e d  the ward.  In  addition,  recorded observational notes.  out  a brief  questionnaire regard-  o u t p a t i e n t b a s i s were i n t e r v i e w e d once  o f r e m i s s i o n when t h e  two  admission  i n the previous twenty-four hours.  c h i l d was  a  s u b j e c t s were  were admitted  The  almost  first  following  during a l l or  t h e i r w a r d made a n d  on  weeks  s t u d i e d i n the ward  were seen  activities  child's  In that admission  physician,  NIH  Institute  A l l of the parents  of the  five  available  Each morning the parents ing  the  to  hospitalized.  were l e s s  The o n c e a week  the  This  children.  where t h e y remained  child  leukemic  s u b j e c t s r e p r e s e n t i n g one  to participate.  o c c u r r e d b e t w e e n two  of  a l 1963).  twenty-four hours  invited  of  study covered  parents of twenty-seven  usually  functioning.  et  both  and  approach-  National  included forty-six  contacted within  to bolster  and  researchers at the  p e r i o d and  NIH  support  illness  a more e x t e n s i v e s t u d y o f p a r e n t s  year  to  -  o p p r e s s i v e awareness o f the  1963,  c h i l d r e n was  27  hospitalized c h i l d was  as w e l l  a t home.  as  The every  during  -  The  28  -  i n t e r v i e w s were p r i m a r i l y  parent's perception of h i s child's the defenses impact the  utilized  individual's  ways  a r i s e when c a r i n g The which izing in  1  their  findings  the parents  suggest  a d m i t t e d may ability  performed  However,  registered lectually  but feel  i n general-  of behaviour  i n data collection  o f these  lived  a t home.  d a t a on t h e p a r e n t s This  observed  between t h e two  fact  limits  not the  stunned  disbelief,  r e s e a r c h e r s were s i m i l a r  and S u t h e r l a n d .  o r shocked  r e s e a r c h e r s found  accept-  of guilt  h a v i n g p a i d more a t t e n t i o n  those  initially  of the diagnosis.  t h a t o n l y an o c c a s i o n a l p a r e n t  and most p a r e n t s  admitted  to  The p a r e n t s  on l e a r n i n g  appeared  t h e d i a g n o s i s and i t s i m p l i c a t i o n s .  a sense  that  of the setting i n  justified  o n t h e w a r d a n d t h o s e who  findings  when c h i l d r e n w e r e expressed  and  assumption.  feeling these  the  i l l child.  due t o t h e s i m i l a r i t y  d e s c r i b e d b y O r b a c h , Bozeman described  t o p r o t e c t h i m s e l f from  not have been recorded.  The  course,  and t h e t h r e a t e n e d l o s s ,  t h a t some i m p o r t a n t  of their  each  and c l i n i c a l  recognize the uniqueness  However, t h e d i f f e r e n c e s groups  with  o f d e a l i n g w i t h t h e many p r o b l e m s  authors  s t u d y was  both  situation  for a seriously  their  illness  by the parent  of the stressful  concerned  t o t h e NIH. and tended  t o accept Hope was  Invariably  revived  the parents  t o blame themselves  to the early,  nonspecific  intel-  f o r not  manifesta-  - 29 tions  of the disease.  sient  phenomenon as t h e p a r e n t s r e a d i l y  the p h y s i c i a n the  sense  that t h e course  same n o m a t t e r  parents  This  seen  a variety  other p a r e n t s , newspapers,  and  with the stress  lectualization  of the stressful  aware o f t h i s  the children  paucity of emotional  (1963s617) s u g g e s t e d apparent  lack  parents would guilt  over  claiming  function  infor-  friends,  There  was an i n t e l - s  was o f t e n  feeling,  a  lack  often  explaining  i t on  down i n t h e p r e s e n c e  However, Friedman  t h e r e was some u n e a s i n e s s  of  et a l about  their  o f emotional expression, evidenced by the fact occasionally  verbalize  n o t f e e l i n g worse.  of a painful  identified  physician. that  Another  insatiable  The p a r e n t s were  they could not break  or their  blame.  of the situation i n defences  event.  or emotional reaction.  the grounds t h a t  A minority of  magazines.  One o f t h e m o s t o b v i o u s  affective  from  essentially  f o r example s t a f f ,  s e v e r a l ways.  of  tran-  assurance  t h e d i s e a s e and most sought  of sources,  coped  of self  t o be a  i n t h e s e p a r e n t s was an  need t o know e v e r y t h i n g about  Parents  accepted  o f t h e d i s e a s e was  d i d , however, d w e l l on f e e l i n g s  from  tended  when t h e d i a g n o s i s was made.  common c h a r a c t e r i s t i c  mation  of guilt  event  i n many p a r e n t s .  their  Denial,  or feeling, Motor  that  c o n f u s i o n and even  the intellectual was a n o t h e r  activity  a n d t h e p a r e n t u s u a l l y was a t l e a s t  also  dis-  defence  served a coping  partially  aware o f  the motivation behind the value of these t o be  effective  reactions  if  they  or  p a r e n t s was  The  major  the parents  Most parents  a comfort  caused  expected  of emotional  t o seek  them t o doubt t h e i r  As  answer.  t o them, o t h e r s  universally  appear t o i n t e r f e r e w i t h an  usually  expected  w e r e o f t e n made t o  attempted  less  allow the parents  of other leukemic  a more d e f i n i t i v e  Hope was  While to  express  the  parents  to take  feel  support  part  guilty  f o r most  children. some m e a n i n g i n  the  found  While  some p a r e n t s  that their  previous religious expressed  by  the disease progressed  i n the  child's  i l l -  convictions.  the parents  intellectual  found  acceptance  children  and  did  of  there  was  a c o r r e s p o n d i n g c u r t a i l m e n t o f hope i n t h e p a r e n t s .  hopes changed hope  source  were  the  w h i l e some w e r e c o n t e n t w i t h a d e f e r r e d e x p l a n a t i o n ,  others wanted  reality.  typically  Parents were not and  continue  i n coping with  they paradoxically  activities  to  parents themselves.  f r i e n d s would not  stricken.  social  did.  who  diagnosis than the  of hopelessness,  normal  not  and  parents  out  children.  friends  in  ness  for their  the  of relatives  appear g r i e f  religion  i n allowing  authors pointed  some d i f f i c u l t y  to  illness;  The  Most p a r e n t s had  relatives  feelings  -  activity.  defences  i n caring  accepting of the these  such  30  f o r one  from  a long term  more r e m i s s i o n o r  hope  f o r a cure  to  even s h o r t e r term  a short hope  The  term  f o r some  period  o f comfort  31 -  for the child.  F r i e d m a n e t a l (1963:621)  stated: "This g r a d u a l d i s s i p a t i o n o f hope appeared i n v e r s e l y r e l a t e d t o t h e increasing presence of... a n t i c i p a t o r y g r i e f . . . . I t w a s common f o r p a r e n t s t o c o m p l a i n o f s o m a t i c symptoms, apathy, weakness, and preoccupation w i t h thoughts o f t h e i l l child. Usually this child's  process  illness  was o b v i o u s  and g r a d u a l l y evolved  When t h e c h i l d acceleration  the parents  children  taken  and t h e p a r e n t s  that their  child  on t h e ward  and would  openly  During  this  involved with  express  other  a d e s i r e t o resume  There were p e r i o d s o f anger and h o s t i l i t y  aimed a t t h e s t a f f .  The d e a t h  o f t h e c h i l d was  usually  c a l m l y w i t h t h e a p p r o p r i a t e e x p r e s s i o n o f a f f e c t and  t h e r e w a s g e n e r a l l y some i n d i c a t i o n no  progressed.  o f t e n appeared r e -  would d i e .  w o u l d become i n c r e a s i n g l y  a more n o r m a l l i f e . usually  as t h e d i s e a s e  e n t e r e d t h e t e r m i n a l p h a s e , t h e r e was  o f g r i e f work  signed t o the fact time  b y t h e f o u r t h month o ft h e  longer  of relief  that the child  was  suffering. This  techniques  study  and thus  of knowledge i n t h i s Futterman, knowledge w i t h t h e i r (1972:241):  i n v o l v e d comprehensive data adds s i g n i f i c a n t l y  collection  t o the relative  paucity  area. Hoffman and Sabshin  added t o t h i s  report on "Parental A n t i c i p a t o r y  body o f Mourning"  -  32  -  In t h i s study formal i n t e r v i e w i n g of twentyt h r e e s e t s o f p a r e n t s w i t h l e u k e m i c c h i l d r e n as w e l l as i n f o r m a l c o n t a c t w i t h o v e r one h u n d r e d a d d i t i o n a l f a m i l i e s w i t h c h i l d r e n s u f f e r i n g from a v a r i e t y o f m a l i g n a n c i e s formed the e m p i r i c a l base f o r g e n e r a t i n g hypotheses regarding the adaptation. Interviews with the place The  during part of the  authors  death  of the  related  observed child  aspects  relinquishment son  and  the  parents his on  the  child's  illness  authors  This  and  they  saw  i t as  and  after his  found  a series  investment  et  al  death.  before  i n the  from  gradual  dead or d y i n g  the  child  perthe  before  and/or compensatory  to d i m i n i s h the  the  functionally  t h a t even w h i l e m a i n t a i n i n g hope,  i n turn led to guilt parent  of  took  Mourning i n v o l v e s the  study began disengaging  part of the  s t r u c t u r e d and  t h a t mourning i n e v i t a b l y begins  of emotional  i n their  death.  were l o o s e l y  or part processes.  Futterman ing  parents  efforts  disengagement.  (1963:251) d e f i n e d a n t i c i p a t o r y  mourn-  as : A set of the awareness i m p a c t and t o attachment t o  processes that are d i r e c t l y r e l a t e d to of the impending l o s s , t o i t s emotional the a d a p t i v e mechanisms whereby e m o t i o n a l the dying c h i l d i s r e l i n q u i s h e d over time.  They have i d e n t i f i e d f i v e p a r t p r o c e s s e s o f a n t i c i p a t o r y mourning which w h i c h t h e y s t a t e d (1963:252) a r e s e q u e n t i a l i n emergence: 1. acknowledgement: becoming p r o g r e s s i v e l y convinced that the c h i l d ' s death i s i n e v i t a b l e 2. grieving: e x p e r i e n c i n g and e x p r e s s i n g t h e e m o t i o n a l i m p a c t o f t h e a n t i c i p a t e d l o s s and t h e p h y s i c a l , p s y c h o l o g i c a l and i n t e r p e r s o n a l t u r m o i l a s s o c i a t e d w i t h i t  -  33  -  3. reconciliation: d e v e l o p i n g p e r s p e c t i v e s on the c h i l d ' s expected death which p r e s e r v e a sense of c o n f i d e n c e i n t h e w o r t h o f t h e c h i l d ' s l i f e and t h e worth of l i f e i n general 4. detachment: withdrawing emotional investment f r o m t h e c h i l d as a g r o w i n g b e i n g w i t h a r e a l f u t u r e 5. memorialization: developing a fixed conscious mental r e p r e s e n t a t i o n of the dying c h i l d which w i l l endure beyond h i s death. The  authors  described these processes  findings  of previous  suggested  that their  work must be part  s t u d i e s i n an w o r k was  in detail  are v a l i d ,  only a beginning  and  related  a p p r o p r i a t e manner.  done t o a s s e s s whether t h e  processes  and  and  suggested  whether they  can  be  the  They  t h a t more processes  and  reliably  measured. In  1973, a s t u d y o f  undertaken  by  Foundation  to identify  as  Cancer  received  extended  whose cases cases  reasons  selected  service  were reviewed  and  findings.  adult patients  from  by  Cancer  social  was  National  financial on  Cancer  c o s t s as the  Care  Incorporated  fifteen  service  Of  fact  month p e r i o d .  staff  to  determine  contacted to request  two  severely limits  hundred  who and  Many were c o n s i d e r e d i n a p p r o p r i a t e f o r a this  well  family.  among a l l f a m i l i e s  a specific  the  the  illness  from  c o u l d a p p r o p r i a t e l y be  participation.  the  d e s c r i b e the  were c l o s e d over  whether they  of  and  s a m p l e was  of  I n c o r p o r a t e d and  other consequences of c a t a s t r o p h i c The  All  Care  families  their variety  the g e n e r a l i z a b i l i t y  seventy-five families  deemed  of  appropriate, which  one  come t h e  limitations  data  study would  cost of catastrophic  the  study  illness also  The  adjustment  authors  The  authors  encourage other  from  recognized  the  expressed  the  studies dealing with  illness.  not  be  to the  financial  discussed here.  However,  some s p e c i f i c  areas  of  social  and  m o s t common h a r d s h i p r e p o r t e d w a s  p r o b l e m s on  stated  study.  d a t a were r e l a t e d  will  identified  consequences. or  and  returned questionnaires  n o n - r e p r e s e n t a t i v e sample but  Most o f the of  fifteen  for this  of their  hope t h a t t h i s the  hundred  the part of the  burdens the personal  emotional  f a m i l y members.  The  (1973:48):  The i l l n e s s b r o u g h t a b o u t a m a r k e d p e r s o n a l i t y as w e l l as p h y s i c a l d e t e r i o r a t i o n i n t h e p a t i e n t . C h i l d r e n i n t h e f a m i l y became c o n f u s e d , f r i g h t e n e d and i n s e c u r e . A d u l t r e l a t i o n s h i p s w e r e w r o u g h t w i t h f a t i g u e a n d a n x i e t y . T h e r e was i n f a c t g e n e r a l d e b i l i t a t i o n of the entire family. It  i s probable  that this  study uncovered  the problems  and  concerns  ducted  the  death  an  after  extremely  facilitated further  structured  of  expression of  erature  are  grief.  Lindemann  patient  and  impersonal  feelings.  indepth exploration Although  f a m i l y members.  of the and  only a small portion  of this  references to  s p a r c e , many a u t h o r s  s t u d y was  d a t a were g a t h e r e d  fashion which  The  findings  area i s  anticipatory and  The  may  i n have  that  essential. grief  i n the  r e s e a r c h e r s have  (1944:142) d e s c r i b e d a c u t e  con-  not  suggest  of  grief:  l i t -  focused  on  Common t o a l l i s t h e f o l l o w i n g s y n d r o m e : s e n s a t i o n s o f s o m a t i c d i s t r e s s o c c u r r i n g i n waves l a s t i n g t w e n t y m i n u t e s t o an h o u r a t a t i m e , a f e e l i n g of tightness i n the throat, choking with s h o r t n e s s o f b r e a t h , n e e d f o r s i g h i n g , an e m p t y f e e l i n g i n t h e abdomen, l a c k o f m u s c u l a r p o w e r , and an i n t e n s e s u b j e c t i v e d i s t r e s s d e s c r i b e d as t e n s i o n or mental pain. He  found t h a t most o f  preoccupation  with  reactions  loss of  the  and  belief  to  Parkes underlying  union,  realization,  on  their  the  the  t h o s e who  had  participated or  four  with  biological  social  hostile  also  expressed  He  to  s i x weeks i t  attempted to  that  While  was  B a s e d on  26  an  Parkes  widows  percent  16  Their  refused  psychological  as  (1974)  forty-seven  been contacted.  this  following their  and  short  of  and as  bereavement.  and  there  has  studied  percent  differences  re-  theory  nineteen respectively  comparison of  implied  theory  event that  i s not  the  promoting  " g r i e f i s a process  outside."  and  explain  Bowlby's  function of  self  comprised of  and  guilt,  i n s i d e the  G l i c k , Weiss  t h o s e who  somatic d i s t r e s s ,  a normal g r i e f r e a c t i o n .  a t h i r t e e n month p e r i o d  s a m p l e was  graphic  of  grieving process  widowers which represented of  conduct.  these reactions.  in reality that  deceased,  Bowlby have s i n c e  behind  Lindemann d e s c r i b e d ,  Their  of  a period  of making r e a l  belief  experienced  the  ( 1 9 7 1 : 8 ) v i e w was  occurred  widows over  image o f patterns  g r i e f has  Parkes'  bereaved  resolve  and  theory  that  already  the  that within  usually possible  implies  the  those  who  few  demo-  were  between  these  - 36 two g r o u p s . tive  However, t h i s  analysis of the situation  approximately  two y e a r s  b e e n an i n a c c u r a t e of  their  should One  a s s u m p t i o n was  loss.  This  non-participants The  point  similar  psychophysical  recurred  o r may  to generalize  stages  to discuss  their  were n o t w i l l i n g  i n their  grief:  at the time o f death; became  symptoms  reduced  of those most  experienced  92 p e r c e n t some  o f t h e widows experienced  and l o s s o f  throughout the f i r s t  not t o break  o f bereavement, attempting  t h e n e e d t o e s t a b l i s h a new at this  became  more  pervasive.  weeks  time most widows  t o s e v e r a l months.  appetite,  This  routine cried  Most the  down i n forced  and t o p l a n  less but their  p h a s e seemed t o l a s t  These widows  year.  control during  A f t e r t h e f u n e r a l t h e widows were  life;  studied  and l a c k o f e n e r g y w h i c h p e r s i s t e d o r  strength  future  the  t o do s o .  early period  recognize  partici-  grief while  s a d and d e s p a i r i n g ; of sleeplessness  but i t  the  self  of others.  have  the findings.  widows i n t h e sample e x h i b i t e d r i g o r o u s  front  thus  not be c r u c i a l ,  indicated the majority  t o concentrate with  may  and a b l e  authors  88 p e r c e n t  inability  non-participants  r e f u s a l ) a n d may  when a t t e m p t i n g  obviously  shock o r d i s b e l i e f cried;  the  d i f f e r e n c e i n t h e two groups i s t h a t  pants were w i l l i n g  experienced  after their  called  retrospec-  assessment o f these i n d i v i d u a l s a t t h e time  be c o n s i d e r e d  important  (they  based on a  from  seemed t o h a v e  to their sadness  several passed  through  the worst  death.  Glick  of their  et a l  grief within  (1974:120)  two  months  after  the  state:  T h e y w e r e no l o n g e r b e s e t b y u n r e l e n t i n g despair...however (they) were almost c o n s t a n t l y aware o f t h e i r l o s s as a b a c k g r o u n d t o t h e i r t h o u g h t s i f not t h e f o c u s o f them. Widows f e l t  t h a t a decent  t h e y resumed t h e i r but  normal  l e n g t h of time  should  a p p e a r a n c e and  schedule  they began moving toward  this  normal  state  elapse of  soon  before  activities, after  the  burial. D u r i n g the p e r i o d o f i n t e n s e mourning widows sively While  reviewed this  control  the  aspect  over  course  of their  of their  i t and  g r i e f was  seemed u n a b l e  t o h e l p the widows i n t e g r a t e as w e l l  as  reproach  cognitively.  in their  omission or They a l s o  While ing  the  and  the  experienced  which guilt  other half  of the et  over  more d i r e c t l y  by  to the  other  death  little seemed  emotionally  sample r e v e a l e d  identified  other  aspects  acts  behaviour  of their  al  (1974:128) i n d i c a t e d and  that their  own that  a t t i t u d e was  same d e e p u n c e r t a i n t y t h a t was  widows".  self-  of death.  relation-  following his  sample emphasized t h e i r  widows p r o t e s t e d e x c e s s i v e l y , response  and  they had  This reviewing  of the  of the  or accident.  might have c o n t r i b u t e d t o the  husbands, or t h e i r  devotion, Glick  defensive  reality  Nearly half  illness  distressing,  to stop.  obsessional review  commission  ship with their  husbands*  compul-  death.  suffer"these a expressed  Many o f t h e their  husbands' of  sample  death.  the  age  forty-five,  ing  because t h e i r  As  attempted  the  this  "Why  him?"  tended  to idealize  first  their  a sense  of their  r e a c t i o n d i d not 147) but  stated  few months o f b e r e a v e m e n t ,  husbands, but,  ment as  diminish w i t h time.  seemed as  early".  likely  T h e r e was  for their  were more l i k e l y dead  to develop  had  Glick  reported late  had  t h o s e who  their  difference an  exper-  This aspect of et a l  had  not.  the (1974:  established i n  bereave-  in  this  opportunity to The  prepare  latter  a fantasy relationship with  a y e a r , most o f t h e widows were w e l l  t o having detached  marriage. had  t o be  was  widows  a l l o f t h e widows  In fact,  a significant  and  deaths  their  spouse. After  way  loss  under  perplex-  a time,  a few weeks t o become  r e a c t i o n b e t w e e n t h e w i d o w s who themselves  Almost  after  husbands::.* p r e s e n c e .  " i t seemed t o t a k e  thereafter  o f widows  Their question, simply put,  memories became more r e a l i s t i c . ienced  "meaning" i n  d i e d a t a t i m e when t h e i r  future.  During the  a  s e a r c h seemed p a r t i c u l a r l y  husbands had  happen t o  to find  sample c o n s i s t e d  should have been i n the did this  -  38  not yet  At t h i s arrived  themselves  from t h e i r  t i m e most widows b e l i e v e d a t a new  stability,  husband that  t h e y had  on and  their their  although done'Vwell.  they  In grief  summary, t h i s  d e s c r i b e d by  merely  the  end  of recovery complete  identified oping  over  end  three  ability  be  used  as  accomplished  In  of  first  stages:  an  shock  and  "The  evidence  clearest  indicator  the work o f  the and  process  He  lost  course  of is  process i s not  yet  year.  restitution.  the  fact,  a p e r i o d o f many m o n t h s  important and  that the  i n s i x weeks; t h i s  phase.  both  relationship." that the  of g r i e f  disbelief,  provides  t o remember c o m f o r t a b l y  disappointments may  over  (1964:96) summarized t h e  awareness,  the  acute  of the  measuring recovery: is  indicated  Lindemann i s not  extends  Engle  -  study  o f t h e most  at the  39  criteria  of  and devel-  for  successful healing  the  pleasures  This  individual  ability has  and then  successfully  grieving.  Summary Two that  anticipatory  ative  on  spouse. and  sets of researchers grief  an  individual's  As  their  some e f f e c t  adjustment  observe  and  following  studies dealt only with the  describe anticipatory  Kubler-Ross dying  grief  patients.  i n that the  the  either  w e r e r e t r o s p e c t i v e s t u d i e s , t h e r e was  ally  of  has  considered  no  positive the  death  elderly  or  neg-  of  a  bereaved  opportunity to  actu-  grief reactions.  (1969) d e s c r i b e d i n d e t a i l  These r e a c t i o n s c o u l d be  individual  possibility  i s preparing  the  s e e n as  f o r h i s own  reactions anticipatory loss.  40  -  However, the t o be  that  the  family's  but  she  g a v e no  patient  family  the to  of  cancer  diagnosis,  their  and  and  The  himself.  s i m i l a r to the  expected  Kubler-Ross those of  method used t o  death while  observed by but  considered  identified  at  the  study  of  and  once again,  family  faces  the  seem, w e r e  patients'  may  stages  the  or  similar to '  patient  loss of  of  pre-  disease  be  in  reactions  reactions:  advancing  patients  were  least three  evoke v a r i o u s  reactions  the  Kubler-Ross  most, i t would  treatment,  f a m i l i e s but  is  one  facing  of  their  ones. Most of  a diagnosis  with  are  Some a u t h o r s  diagnosis  those of  to  cancer,  p r o c e s s w h i c h may  stage.  own  s u r v i v o r m i g h t be  patient  i n d i c a t i o n of  patients  stages.  terminal  loved  expected  reactions  i n more d e t a i l  disease  his  the  some f o r m o f  terminal  the  an  1  members. Many o f  dying  of  d i f f e r e n t from those of,the  stated  the  reactions  -  parents  of  of  scribedt p a r e n t s ' searchers actions  the  work which d e s c r i b e s  cancer  leukemic  i n one  children.  reactions  have i d e n t i f i e d in their  grief.  i t s members has Several  i n some d e t a i l and  family's  described  and  been  studies a  few  response done  have of  de-  the  re-  anticipatory grief  re-  subjects.  Anticipatory ventional  of  the  One  g r i e f by i s the  d e f i n i t i o n would precede  reaction to  an  expected  con-  loss,  the  other may  to the  r e s e m b l e one  fested  and  Stimulated since to  actual  by  the  t h i r t e e n months  experiencing  few  adult  research  c l o s e l y r e l a t e d phenomena/  i n the  manner i n w h i c h t h e y  may  following be  study  their loss.  similar to  other over The  i n f a m i l y members o f  have  a period  up  of  behaviours  they  individuals  t o document a n t i c i p a t o r y g r i e f  patients  diagnosed with  this  member o f  emphasizes the  area.  reactions.  researchers  t h o s e m a n i f e s t e d by  authors have studied  in this  mani-  grief.  i s designed  the  they  are  been done i n d o c u m e n t i n g g r i e f  b e r e a v e d *s b e h a v i o u r  anticipatory  This  That  As  -  L i n d e m a n n ' s w o r k i n 1944,  have described  an  another  some w o r k h a s  described  reactions  loss.  41  family  r e a c t i o n when t h e need  for  cancer.  patient further  is  Chapter  3  METHODOLOGY  The diagnosis an  o f cancer  anticipatory  others care  o f these  about  reaction  of individuals  was b a s e d  to live  ( C h a p t e r 1, questions  t o a diagnosis o f cancer i n  to life  and t h e i r  cancer  i s per-  w h i l e more c a n c e r p a t i e n t s c a n disease,  and i s p e r c e i v e d as such b y cancer  families.  t o carry out this  include:  and d a t a  study.  The s p e c i f i c  study d e s i g n , sample s e l e c t i o n ,  topics  data  analysis.  Design This  cancer  chapter describes the various aspects o f t h e  methodology used considered  that  longer periods o f time w i t h t h e i r  a threat  This  Study  t o consider i nthenursing  on t h e assumption  expect  lection  significant  s t u d y was d e s i g n e d t o answer t w o s p e c i f i c  as l i f e - t h r e a t e n i n g :  patients  precipitates  As p r e v i o u s l y mentioned  ceived  s t i l l  i nthepatient's  concept  individuals.  disease)  i f a  member. It  is  s t u d y was t o d e t e r m i n e  (a l i f e - t h r e a t e n i n g  a valid  thereaction  family  of this  grief  and i s thus  page 9 ) t h i s  a  purpose  s t u d y ^ w a s ' .designedht,o' i n c r e a s e t h e b o d y o f  - , 42 -  col-  - 43 -  knowledge in  about  individuals' reaction t o the diagnosis  a f a m i l y member o r l o v e d  nature. atory  Filstead  study  increase and  Cook  study  (1970) s t a t e d t h a t  understanding  i ti s exploratory i n  a non-experimental  o f human b e h a v i o u r .  familiarity with  Sellitz,  exploratory  a phenomenon o r t o a c h i e v e  Wrightsman  the research  and Cook s t a t e d t h a t  design  must be f l e x i b l e  While t h i s  possible  thus  flexible  aspects  o f t h e phe-  was d e s i g n e d p r i m a r i l y t o  on one a s p e c t ,  reactions  consider  of the subjects  from t h e a n t i c i p a t o r y g r i e f  and d e s c r i b e d  Sample  Selection For  i n this  r e a c t i o n were a l s o  "significant  two terms:  others".  Other to iden-  study.  t h e p u r p o s e o f sample s e l e c t i o n i t was  operationally define  and  a n a t t e m p t w a s made t o k e e p t h e  enough t o w a r r a n t t h e term e x p l o r a t o r y .  tified  and  i n an e x p l o r -  o f an i n d i v i d u a l ' s r e a c t i o n s w h i c h were d i f f i c u l t  separate  to  study  anticipatory grief  concentrated  design  new  enough t o  p e r m i t t h e c o n s i d e r a t i o n o f many d i f f e r e n t a s p e c t s  the  Wrightsman  intoi t .  study  nomenon.  explor-  when t h e p u r p o s e i s t o  (1976) i n d i c a t e d t h a t t h e p u r p o s e o f an  Sellitz, atory  As s u c h ,  i s t h e method o f c h o i c e  i s t o gain  insights  one.  o f cancer  necessary  "life-threatening disease"  The d e f i n i t i o n s  follow.  -  44  -  Life-threatening disease: a diagnosis of cancer f o l l o w i n g the d i s c o v e r y of a tumour which i s non-resectable, o r has been s u r g i c a l l y removed w i t h some s u s p i c i o n o f m e t a s t a s e s , o r r e q u i r e s further treatment following surgery. Significant other: i n c l u d e s spouse, parents, c h i l d r e n , s i b l i n g s , a n d a n y o t h e r i n d i v i d u a l whom t h e p a t i e n t i d e n t i f i e s as p l a y i n g an i m p o r t a n t p a r t i n the close personal aspects of h i s l i f e . After  d e f i n i n g these terms  a l o c a t i o n where s u b j e c t s conducted ment o f  at  for  As  stages  diagnosis,  diagnosis  their  i n the  while  i n the  sample  i n order  are  to  f r o m among t h e  or  surgeon  families of  thus not  l i f e - t h r e a t e n i n g , i t was  1. (aged  can  be  f a m i l i e s w h o s e member h a d disease. Subject  2 0 - 6 0 ) who  disease  and  has  has  The  following  be  for  patients  considered  referred preliminary  to  other  to  select  i n the  latter  highly  curable  to  criteria  is a significant  treatment.  investigator the group. and  approachsonly  been diagnosed w i t h  specific  clinic  further  the  life-  for s e l e c t i o n were: of  a  patient  been diagnosed w i t h l i f e - t h r e a t e n i n g  completed h i s  diagnostic  was  treat-  r e f e r r e d back  for care,  decided  and the  some a r e  access to p a t i e n t s ,  as  threatening  referred to  referred  secure  investigation  diagnosis  for consideration  ensure  many c a n c e r s  The  process:  Further,  those  are  f o r m e r c a t e g o r y may  family physician  decided,  disease  necessary to  found. for the  Patients  others  and/or surgery  patients  be  a large urban c l i n i c  cancer patients.  at various  could  i t was  tests  at  the  clinic.  - 45 2. possible the  Subject  i s aware o f t h e p a t i e n t ' s  consequences  attending  clinic  3.  Subject  (assessed specialist lives  procedure  investigator  given  an e x p l a n a t o r y  complicated outpatient  do n o t accompany  t o obtain  subjects, the  their  briefly  and t h e p a t i e n t  was  t o t a k e home t o h i s f a m i l y ( s e e approached  expressed  w i l l i n g n e s s t o have  a t l e a s t some o f t h e i r that  c h i l d r e n n o t be approached t o p a r t i c i p a t e and t h i s  wish  parents  While t h e reasons d i f f e r e d , t h i s  of adult  children.  c h i l d r e n as i t was  Often the patient  have t o be concerned that  Often patients  interest i nthe  expressed the desire  was r e s p e c t e d .  stated  letter  A l l patients  family participate. their  form).  a p p r o a c h e d t h e p a t i e n t w h e n h e came t o t h e  The s t u d y was e x p l a i n e d  and s t a t e d  and agrees t o  o p e r a t e s p r i m a r i l y as an  Thus, i n order  area.  fluently.  t h e s a m p l e was  and r e l a t i v e s f r e q u e n t l y  first  Appendix B ) . study  the clinic  facility  English  (see Appendix A f o r consent f o robtaining  and  the subject).  Vancouver  i s available f o rinterview  Subject  to the clinic.  clinic.  w i t h i n the Greater  5.  the fact that  patients  interviewing  and speaks  and t h e  the patient  understands  The  treatment  before  with  4. S u b j e c t  have t h e i n t e r v i e w taped  by  briefly  diagnosis  their  felt  about t h e i r  was as t r u e f o r  f o r parents o f younger  that  older  parent's  c h i l d r e n should  condition  c h i l d r e n were t o o busy t o give  not  a n d some  their  time f o r  - 46 the  study.  child  Parents  had n o t been  o f younger fully  children often  informed  or that  aware o f t h e s e v e r i t y o f t h e p a r e n t ' s children  informed  o f the study only  t o p a r t i c i p a t e (teenage b r o t h e r s ) . participate: participate the  a f a t h e r who  stated  the child  condition.  adults  and a husband.  permission.  these patients investigator at :  reluctance  also  refused  also would not allow h i s wife B o t h o f t h e s e men  felt  i n v e s t i g a t o r come t o t h e h o u s e w o u l d u p s e t  refused  was n o t  Of -those  two expressed Two  that the  I t should  had expressed some l e n g t h  that  to  to having  the patient  be n o t e d , however, t h a t  and  both of  i n t e r e s t and had t a l k e d w i t h t h e about t h e i r  own r e a c t i o n s  and  feel-  ings. After willingness for  the patients  and a t t h i s  each subject. time  about t h e i n t e r v i e w were This sample the  as o n l y  clinic  their  f a m i l y members *  t o p a r t i c i p a t e , t h e i n v e s t i g a t o r made  an i n t e r v i e w w i t h  telephone  reported  This  any questions  an  was u s u a l l y done b y the subject  at t h e time  might  have  answered.  method o f sample s e l e c t i o n p r o v i d e s patients  appointment  who  f i t the criteria  o f t h e study were  of  sample has been d e s c r i b e d  by Abdellah  as  a c o n v e n i e n c e s a m p l e , " w h e r e we  select  a non-random  and were  approached. and L e v i n e  attending This  type  (1965:310)  f o r study the patients  who h a p p e n t o b e i n t h e h o s p i t a l a t a c e r t a i n t i m e " .  The  authors  - 47 p o i n t e d out this the It  type  that while  there  i s an  o f sample, i t i s n o t  l a r g e r p o p u l a t i o n do  not  e l e m e n t o f randomness  truly  random as  have the  a l l members  same c h a n c e o f  i s t h e r e f o r e a n o n - p r o b a b i l i t y sample w h i c h may  r e p r e s e n t a t i v e o f the p o p u l a t i o n . study  As  t h i s was  aimed a t l e a r n i n g more a b o u t t h e  r a t h e r than  to  selection.  not  an  be  exploratory  feelings of  individuals  at p r o v i n g or d i s p r o v i n g a g i v e n h y p o t h e s i s ,  l i m i t a t i o n was  not  a major concern.  In  fact,  of  Phillips  this (1971:95)  stated : If context sample) d a t a on  Data  the d e f i n i t i o n o f the problem emphasizes the o f d i s c o v e r y , a s u p e r i o r s t r a t e g y ( t o a random f o r a g i v e n p r o b l e m m i g h t be t o s e c u r e d e t a i l e d a n o n - p r o b a b i l i t y sample.  Collection The  method c h o s e n f o r c o l l e c t i o n - o f t h e  semi-structured W r i g h t s m a n and technique  this  Cook  laden  study.  open-ended q u e s t i o n s .  (1976) s u g g e s t e d  of choice  emotionally for  interview with  that the  for revealing information  subjects The  and  as  i n t e r v i e w d e s c r i b e d by M e r t o n  specific  t o p i c s t o be  wording of the Smith  questions  nor  (1975) s t a t e d t h a t t h i s  responsibility answers.  and  about  i n t e r v i e w was  focussed  (1956).  Sellitz,  complex,  appropriate similar to While there  i n each i n t e r v i e w , n e i t h e r the  order  of the  format g i v e s the  freedom o f e x p r e s s i o n  a  i n t e r v i e w i s the  s u c h i t seemed  format o f the  covered  d a t a was  t o p i c s was  the were  the constant.  r e s p o n d e n t more  i n f o r m u l a t i n g h i s -.•'--„..-.  - 48 The advantages. ized  semi-structured According  sensitive topics  this  (1966),  method i s p r e f e r a b l e  interview with ensure that The  t h e same t o p i c s topics  covered  and Cook  are covered  i n each  his  knowledge o f t h e c o n d i t i o n o f h i s r e l a t i v e  individual's future  time,  of daily  effect of the diagnosis,  between subject felt  the effect of the patient's  activities  and p a t i e n t  living,  interview. included:  and h i s p a s t concerns at  diagnosis  on t h e  h i s thoughts on t h e  e f f e c t on t h e r e l a t i o n s h i p  and any o t h e r  was i m p o r t a n t t o m e n t i o n .  t o compare  learning of the diagnosis,  o r knowledge o f cancer, h i s most i m p o r t a n t  present  (1976)  p a r t i c u l a r study  individual's reaction to first  the  and  approach i ti s p o s s i b l e  the  contact  with  disadvantage  i s the inability  i n this  Quint  i n sequence o f  t o overcome t h e major  With this  standard-  the readiness  Wrightsman  interview which another.  less  when d e a l i n g  fora shift  Sellitz,  i talso helps  an u n s t r u c t u r e d  this  specific  of discovery.  i f such a change i s i n k e e p i n g w i t h  suggested that  to  to Phillips  areas because i t allows  mood o f t h e r e s p o n d e n t .  one  i n t e r v i e w h a s some  format has advantages i n t h e context  (1976) s t a t e d t h a t  of  -  topic that  the  subject  (see- A p p e n d i x C f o r i n t e r v i e w  guide). Open-ended q u e s t i o n s to  answer t h e q u e s t i o n s  were used t o permit  i n h i s own t e r m s .  the  While this  subject produces  some d i f f i c u l t y issue  49  i n analyzing  i s complex or  the  -  the  relevant  data,  i t is essential i f  dimensions  Because open-ended questions possible study  that  the  the  test  validity  the  i n v e s t i g a t o r c o n d u c t e d two  While for a  of  the  the  ities  of  i t had  e a c h must be that  bias  viewer  and  Denzin  (1970) s t a t e d  fact that  who  was  these  perception  colto  method of An  and  choice  interview  the  Wrightsman  of  the  of  the an  and  the  Cook  inter-  interview  what he and  were conducted by possible  to  respondent.  fact that  recognized  is  complex-  s i t u a t i o n appears  interviewer  sources of  data  the  bias  the  the  are respon-  wants to  know.  considered. investigator  helped  to  effect.  Once t h e was  Sellitz,  interview  n e e d e d t o be  a l l interviews  aware o f  minimize t h e i r  bias  the  common e r r o r s i i n  the  to  was  guide.  i n d i v i d u a l s and  understanding  always t e l l  These sources o f The  that  i t  interviews  r e s p o n d e n t *s p e r c e p t i o n  interviewer's  assumption of  dent does not  i n the  used,  actual  pilot  known.  relevant  i t s disadvantages.  considered.  come a b o u t t h r o u g h t h e the  be  seemed t o be  i n t e r a c t i o n b e t w e e n two  (1976) s t a t e d  tacit  interview  interview  data c o l l e c t i o n ,  social  not  Thus, p r i o r t o beginning  lection,  not  w e r e t o be  data c o l l e c t e d would  questions.  are  the  necessary to  method  for collecting  d a t a was  d e c i d e u p o n some m e t h o d o f  chosen, i t  recording  the  data.  -  50  R e c o r d i n g o f i n t e r v i e w d a t a may writing  i t up  recording.  this  i n order  interviewee's that  responses.  and t h a t  investigator.  during  turned  dent  viewer's true  had  recording),  and f i r s t  was  selective  replies  were  con-  f o r the use o f the spent  a few minutes i n order  to  showed awareness o f t h e  (1957) s t a t e d t h a t  t o accept the recorder  of i t s importance  i t was  o f what  the respon-  on t h e  and t h i s  was  inter-  found t o be  (an i n t e r v i e w )  necessary t o decide  within three  contact  completed t h e i r  period  A l l of the  and became more t a l k a t i v e when i t  the decisions  were a l l i n t e r v i e w e d nosis  indicated  situation.  After (tape  or  accounts o f the  t u r n i n g on t h e r e c o r d e r  Kahn and C a n n e l l  explanation  i n this  their  t h e tapes were s t r i c t l y  i s usually willing  coding  f o r use i n  responses.  that  O n l y one s u b j e c t  off.  field  W r i g h t s m a n and Cook  assured  the interview  methods:  selected  verbatim  The i n v e s t i g a t o r f r e q u e n t l y  develop rapport.  was  was  sometimes i n h i b i t s  the respondent before  recorder  recorder  Sellitz,  i n t h e study were  fidential  with  A tape  recording,  t o have accurate  a tape recorder  subjects  be done b y s e v e r a l  f r o m memory, v e r b a t i m  mechanical study  -  with  tests  Kahn and C a n n e l l  clinic,  how subjects diag-  and a l l p a t i e n t s  at the c l i n i c .  chosen t o decrease problems memory.  The  months o f t h e p a t i e n t ' s  the cancer  diagnostic  "when".  and  caused by poor  (1957:44) p o i n t e d  This  time  or out  that  - 51 "we t e n d  i n memory t o m o d i f y ,  in  t o make t h e m  and  order  change and d i s t o r t  advantageous t o approach first  memory l o s s through  even more s i g n i f i c a n t l y ,  their  tests  Once t r e a t m e n t  fears had been a l l e v i a t e d their  homes.  surroundings the at  see  the investigator  were completed  and  treatment  and t h e y were more c a p a b l e  of  ( a l l b u t two) were i n t e r v i e w e d i n  Two  request.  s u b j e c t s were seen  of  familiar  comfort  at their  during  p l a c e s o f work  Many o f t h e s u b j e c t s e x p r e s s e d  an  initial  t h e y m i g h t h a v e t o come t o t h e  and w e r e r e l i e v e d when t h e i n v e s t i g a t o r  stated  she would  t h e m a t home. When a l l o f t h e d e c i s i o n s r e l a t e d  and  found  was d e c i d e d u p o n , many o f  a n d was i n t e n d e d t o p r o m o t e t h e i r  r e l u c t a n c e when t h e y t h o u g h t clinic  decrease the  T h i s p r o v i d e d them w i t h t h e s e c u r i t y  interview. their  and thus  feelings.  Most o f the subjects their  following the  s t u d y t h a t f a m i l y members w e r e u n d e r t o o g r e a t  t o begin.  discussing  experience  i t m i g h t have been more  subjects immediately  a. s t r a f e i b e f o r e t h e d i a g n o s t i c scheduled  While  contact with the c l i n i c  the pilot  situations  f i t more c o m f o r t a b l y w i t h o t h e r  w i t h o u r image o f o u r s e l v e s " .  patient's  past  w h e r e h a d b e e n made, t h e p r o c e d u r e  began. manner.  The i n t e r v i e w p r o c e e d e d The i n v e s t i g a t o r  t o w h a t , how,  of collecting  when  the data  i n a supportive, nonthreatening  e x p l a i n e d t h a t s h e was  particularly  - 52 interested  i n the subject's  learning o f the diagnosis assured  subjects  r e a c t i o n and f e e l i n g s f o l l o w i n g  o f cancer  i n their  that whatever they  could  helpful.  Many o f t h e s u b j e c t s  was b e i n g  recognized  important  enough t o be i n v e s t i g a t e d .  had  little  and t h a t t h e i r  to offer  true o f three them d u r i n g  h u s b a n d s who i n s i s t e d  the interview.  With  o r wrong way t o r e s p o n d  their  wives  these  The  is  spent  interview,  Data  they  particularly with  was no  t h e encouragement o f respondents.  from twenty t o e i g h t y forty minutes.  collection,  each subject.  joined the subject  minutes While  this  the investigator  Often  following the  and s p e n t  some  time  Analysis of data  open-ended questions  subject. —  felt  theinvestigator.  Collection with  considered  that t h e patient remain  approximately  one hour w i t h  be  that the family  assurance that there  o f actual data  the patient  talking with  was  i n d i v i d u a l s became w i l l i n g  t h e average being  at least  pleasure  This  and  her would  Some s u b j e c t s  and w i t h  interviews ranged  the time period  tell  f e e l i n g s were  the investigator.  right  with  expressed  relative  provided  a semi-structured  Holsti  (1969:10)  interview  an abundance o f d a t a  The i n t e r v i e w s were a n a l y z e d  the presence o f s p e c i f i c  was n o t e d .  using  using  from  a qualitative  method  indications of anticipatory grief stated:  each  -  53  -  Q u a l i t a t i v e c o n t e n t a n a l y s i s , w h i c h has s o m e t i m e s b e e n d e f i n e d as t h e d r a w i n g o f i n f e r e n c e s on t h e b a s i s o f a p p e a r a n c e o r n o n a p p e a r a n c e o f a t t r i b u t e s i n messages, has been d e f e n d e d most o f t e n , thought not s o l e l y f o r i t s s u p e r i o r performance i n problems of a p p l i e d s o c i a l science.... The s i n g l e a p p e a r a n c e o f o m i s s i o n o f an a t t r i b u t e i n a d o c u m e n t may b e o f m o r e s i g n i f i c a n c e t h a n the r e l a t i v e frequency of o t h e r c h a r a c t e r i s t i c s . As  the  purpose of  experienced of  these  any  The which the  (see  coding tool  tions  of  clinic)  anticipatory  indicative of  thesis  of  depressive  of  study.  and  two  other  committee felt  g r i e f , the  recorded  and  specific  nurses the  on  director  found  by  the  one  selected  of to  nursing  Lindemann.  the  The  of  subjects  represent  suicidal in  the  their  by  the  interviews.  investigator  The and  the  two two  patients pilot  and  interviews  nurses mentioned  the other  l i t e r a t u r e , past  experience with  behaviours  (1970)description  addition  the  the  manifesta-  i n Peretz*s  grief, with  behaviours  of  reference  pilot  specific  behaviours  t h r e e m a n i f e s t a t i o n s were i d e n t i f i e d through  the  had presence  a  (a member o f  were i n d i c a t i v e of  grief outlined  symptoms o f  and  i s composed o f  d e p r e s s i o n were  The  anticipatory  subject  D)  t h o u g h t s w h i c h were m e n t i o n e d by pilot  i d e n t i f y i f the  determined  Appendix  investigator  cancer  to  manifestations  investigator's the  s t u d y was  c h a r a c t e r i s t i c s was  coding t o o l .  at  the  to  the  families  were  and  analyzed  above, u s i n g  a  preliminary developed of  version  of the coding tool.  the final  investigator identifying tive  The i n v e s t i g a t o r  coders.  conducting t h e i n t e r v i e w o f each  listened  the presence  a statement  iours,  tape.  which  o f any o f t h e behaviours  she f e l t  s h e made a c h e c k  as w e l l  grief.  purpose  deemed  o f t h e time o f t h e statement  beside those  indica-  r e p r e s e n t e d any o f these  The t a p e s were s u b s e q u e n t l y t r a n s c r i b e d statements  of  When s h e  mark i n t h e a p p r o p r i a t e space  as an i n d i c a t i o n  made i n t h e m a r g i n s  subject, the  t o the tapes with t h e s p e c i f i c  of the manifestations of anticipatory  heard  then  v e r s i o n u s i n g t h e comments a n d s u g g e s t i o n s  t h e two independent After  54 -  behav-  on t h e t o o l , on t h e  and n o t a t i o n s  which  described the  behaviour. To method  check  the reliability  and t o ensure  that  the two nurses mentioned sample o f t h e t a p e s . to  t h e same f i v e  presence  b i a s was n o t i n f l u e n c i n g above were asked  Each independent  tapes  of specific  of the investigator's  t o code  behaviours.  the three analyses t o determine  The i n v e s t i g a t o r i f t h e presence  manifestations had been i d e n t i f i e d  the results, a random  c o d e r was a s k e d  and u s i n g t h e coding t o o l ,  by each  coding  to listen  t o note the then  compared  o f t h e same  coder.  Summary The  s t u d y was d e s i g n e d t o d e t e r m i n e  i ffamily  members  of  cancer  tory was  patients  large  from  urban cancer  by E r i c h Lindemann i n 1944.  among t h e f a m i l i e s o f p a t i e n t s clinic.  use  of a semi-structured  was  qualitative i n that  indicative  -  experienced the manifestations  g r i e f described selected  55  of anticipaThe  sample  referred  to a  The d a t a w e r e c o l l e c t e d t h r o u g h  interview  and t h e a n a l y s i s  the presence  o f a n t i c i p a t o r y g r i e f were  of the data  of s p e c i f i c behaviours noted.  the  Chapter  4  RESULTS  The members the  purpose o f t h e study  o f patients r e c e n t l y diagnosed with  manifestations  Erich  Lindemann —  of anticipatory grief depression,  the  patient, a review  him  and a n t i c i p a t i o n  necessitated guide,  recordings  tion  o f t h e sample  views, the  this  pilot  Pilot  o f t h e modes Using  chapter  study  Study  —  inoperable man w i t h  o u t l i n e d by  preoccupation  with  o f readjustment  that would  a semi-structured twenty  i n this  Several  chapter.  a brief  and t h e coding  be  interview  f a m i l y members o f  quotations  and t h e from  these  In addition to a descrip-  and a d i s c u s s i o n o f t h e r e s u l t s includes  befall  of the inter-  summary o f t h e r e s u l t s  reliability  of  test.  Results  The subjects  experienced  The i n t e r v i e w s were t a p e r e c o r d e d  used t o code t h e d a t a .  are presented  i f family  o f t h e forms o f death w h i c h might  by h i s death.  patients.  cancer  first  heightened  the investigator interviewed  fourteen  tapes  was t o d e t e r m i n e  pilot  study  consisted of interviews with  the twenty-five lung  tumour  year  o l d d a u g h t e r o f a man w i t h  and t h e f o r t y - t h r e e year  a r e c e n t l y diagnosed  lymphoma.  -56-  two  o l dwife  an  of a  The t a p e s o f t h e s e  two  interviews her  were l i s t e n e d t o by  t h e s i s committee  clinic.  Each of  f i v e minutes.  between the an  and  three  iours  or  draft of  had  final  subject.  on  the  Reliability  of  To  the  coding  above were asked t o beginning dom  the  numbers t o  reliability of  the  these  the  forty-  similarities  interview  designed  presence of  at  guide  this  time.  used by  the  agreed that  each of  subjects  A  each  specific  raters identified  of  behav-  identical these  sub-  Some b e h a v i o u r s  w h i c h had  not  been  added t o  the  tool.  of  the  bias  of  the  r e s u l t s , the  investigator did two  code a random sample o f the  nurses the  i n v e s t i g a t o r used  d e t e r m i n e w h i c h t a p e s w o u l d be  interviews  cancer  data c o l l e c t e d  d r a f t were subsequently  the  interviews,  check.  the  Method  ensure that  the  identify  a l l four manifestations.  coding  Coding  the  a n a l y s i s t o o l was  and  at  of  collection.  A l l three  preliminary  of  to  agreed that  note the  for each subject  version  influence  sufficient  data  f e e l i n g s mentioned by  included  nursing  chairman  lasted approximately  a n a l y s i s was  the  experienced  i n v e s t i g a t o r , the  l i s t e n e r s agreed that  t o o l for data  method o f  f o r each  the  d i r e c t o r of  I t was  l i s t e n e r s to  behaviours jects  three  appeared  acceptable  preliminary  the  -  interviews  subjects.  The  the  and  these  The  were r e l e v a n t  was  57  Five  tapes were s e l e c t e d  were analyzed  by  three  mentioned  tapes.  Before  a table  of  ran-  for  this  selected so  not  that  independent  one  quarter  raters.  The  results  encouraging.  reliability  For four o f the five  were i n complete tive  of this  58 -  agreement.  a l l four  anticipation  interviews  Each i d e n t i f i e d  o f t h e same m a n i f e s t a t i o n s ;  ienced  three  of the manifestations  one o f t h e e x t e r n a l coders  expressing  some f e e l i n g s o f h e i g h t e n e d  identified  coder.  This  a l l three  indica-  subjects  a minor  exper-  and one d e s c r i b e d  a l lbut  When a n a l y z i n g t h e f i f t h felt  that  the subject  preoccupation  which  by e i t h e r the i n v e s t i g a t o r or the other  was, then,  than  coders  behaviours  o f these  o f modes o f r e a d j u s t m e n t .  interview,  not  check were more  discrepancy  was were  external  i n the three  analyses. An tion  important  coders;  that  which were not evident  the  that  n o t e d b y t h e i n v e s t i g a t o r was i d e n t i f i e d  external  that  f i n d i n g was t h e f a c t  any b i a s  on t h e p a r t  manifesta-  by each o f t h e  i s , she d i d n o t i d e n t i f y t o others.  every  manifestations  I t c a n be assumed,  therefore,  o f t h e i n v e s t i g a t o r would not increase  number o f m a n i f e s t a t i o n s  a t t r i b u t e d t o each  subject.  Sample D e s c r i p t i o n The  sample c o n s i s t e d o f twenty  fourteen  patients.  spouses,  three  in  T a b l e 1 shows t h a t t h i s  parents  and f i v e  children.  age from twenty-one t o f i f t y - n i n e  twelve  f a m i l y members o f  to fifty-nine.  included  twelve  The p a t i e n t s  and t h e s u b j e c t s  The p a t i e n t s ' d i a g n o s e s v a r i e d  ranged  from consider-  -  59  TABLE Age  1  and R e l a t i o n s h i p o f S u b j e c t  Tumour L o c a t i o n  Age  to Patient  Relationship  Age  Prostate  59  Wife  55  Skin  28  Husband  28  Breast  36  Husband  42  Testicle  21  Father Mother  55 53  Breast  46  Husband Daughter Daughter  50 22 14  Brain  44  Wife  36  Endometrium  42  Husband  43  Nasopharynx  24  Wife  23  Breast  43  Husband Daughter Daughter Daughter  50 21 16 12  Lung  49  Wife  49  Breast  47  Husband  48  Breast  33  Husband  33  Breast  50  Husband  51  Breast  29  Mother  59  60  -  ably. one  Of t h e f o u r t e e n ,  each o f t h e b r a i n  (teratoma), and  seven had tumours o f t h e b r e a s t ,  had  a trade  p a t i e n t s had a non-  background o f the subjects i n grade  i n Philosophy.  the equivalent  or technical school  seven  length  following high  interviewed  the  average being  the  p a t i e n t h a d h a d some s u r g e r y ,  ranged  tests  school;  attended  four had had  nurse.  five  t o t h i r t e e n weeks  e i g h t weeks.  During  with  this  time,  had been r e f e r r e d t o t h e  therapy  A l l b u t two o f t h e p a t i e n t s  f o r further surgery  o f immunotherapy; f o l l o w i n g some  clinic to  were  at the time o f the interview.  one h a d begun a course  was s c h e d u l e d  four  f u r t h e r t e s t s and had been scheduled  further treatment.  exceptions,  from  approximately  where he had undergone  Cobalt  spouse  o f time between l e a r n i n g o f t h e diagnosis  being  receiving  varied  and one  o f grade eleven:  and  begin  lesion.  A l l o f t h e a d u l t s h a d com-  some u n i v e r s i t y ; a n d o n e w a s a r e g i s t e r e d The  the testicle  obvious presence o f a metastatic  The y o u n g e s t was s t i l l  at least  and  (melanoma), t h e p r o s t a t e  O n l y one o f t h e s e  tumour w i t h  h i s Doctorate  pleted  the lung,  t h e endometrium, t h e s k i n  ThSi e d u c a t i o n a l widely.  J  (astrocytoma),  the nasopharynx.  resectable  -  Of t h e  the other  diagnostic  at the c l i n i c .  Manifestations Of  Experienced  the twenty  subjects, nineteen  described  at least  - 61 one  o f t h e m a n i f e s t a t i o n s mentioned by Lindemann.  shows t h e s p e c i f i c  manifestations  Seven o f t h e twenty d e s c r i b e d four  This  described  by each  a l l four; these  three  i n c l u d e d two spouses:  thoughts  o f the four  seven  2  subject.  included  manifestations.  a w i f e who d i d n o t d i s c u s s  about h e r husband's death  anticipate wife  experienced  Table  spouses, two d a u g h t e r s o f one p a t i e n t and one mother. S i x  of the subjects  t h e readjustments  t h a t would be necessary  n o n e o f whom c o n s i d e r e d  necessary  following  husbands.  While  each described  a l l three  a different  some h e i g h t e n e d  subject,  should h i s  parents  of  readjustment  A l l of the three  o n l y two o f t h e f o u r m a n i f e s t a t i o n s  s u b j e c t s who e x p e r i e n c e d described  t h e modes o f  the p a t i e n t ' s death.  subjects whoedescribed  any  a n d a h u s b a n d who d i d n o t  d i e ; two d a u g h t e r s o f one p a t i e n t and b o t h  another,  one  -  o f these  men m e n t i o n e d  second m a n i f e s t a t i o n .  some The  were  depression, three  o n l y one o f t h e m a n i f e s t a t i o n s a l l preoccupation  a husband, d i d not d e s c r i b e  with the patient. any o f t h e four  Only mani-  festations. The  most commonly e x p e r i e n c e d  manifestation  heightened  preoccupation  Depression  was m e n t i o n e d b y s i x t e e n a n d a n t i c i p a t i o n  of  readjustment  thirteen  described by seventeen  and r e v i e w i n g  respectively.  forms o f death  was  subjects.  by nine  o f modes and  - 62 TABLE 2 Manifestations  of Anticipatory  Grief  D e s c r i b e d By S u b j e c t s A  0  CO -P  c  o Q) -H • -P 0 rO  I  -p  C  0  0 -H  CD •p ft -r—i m •H A H .fl CD to CO  fl 0  -H CO CO CD  aD C  •H •P 0) ro  a a>  +> ,fl  u  CJ  0  -H CD  Q  a  n  U  -p d) -P  a  g -p o CO  •H U CO •n -H CD -P TJ m  fl 0  <  <D  fl  g  C m  •H  >  0  CU CO •H +J > p0 CfCD Q O!  S co 3 (D CO £ m fl •H O J fl -H <C ft) +J E H 2 IB  3  1  Wife  X  X  2  Husband  X  X  3  Husband*  X  X  X  3  4  Father Mother  X  X  X  X  X  X  3 3  Husband Daughter Daughter  X  X  X  4  X  X  X  .3  X  X  X  3  6  Wife*  X  X  X  4  7  Husband  X  8  Wife  9  Husband* Daughter Daughter Daughter*  5  10  Wife*  11  Husband  12  Husband  13  Husband  14  Mother  TOTAL number Experiencing Specific Mani f e s t a t i o n s  X  2  X  X  2  X  1  X  X  X  X  X  X  X  X  X  2 1 4 4  X  X  X  X  4  X  X X  1  X X  X  X  X  0  -  X  X  X  X  16  17  9  13  * Random t a p e s u s e d f o r r e l i a b i l i t y  4  check  4  0 O fl 0)  •H ^1 CD  ft X  - 63 Table specific In  2 also  patient  shows t h a t  d i d not experience  one f a m i l y g r o u p t h e f a t h e r d i d not mention  justments  following the possible  the  other  f a m i l y group,  two  o f the daughters described the third  occupation  with  only  h e r mother.  stepfather)  alluded  possibility  of h i swife's  individuals  experienced  this  last  any thoughts  there  daughter  family  t h e same  described  daughters  while  a l l f a m i l y members o f a  and w i l l  a l l four,  a l l four  of the  mentioned  The.  These d i f f e r e n c e s  about t h e i n t h e way  some c o n f l i c t i n  i n more d e t a i l  later.  of anticipatory grief  i n d i f f e r e n t ways b y d i f f e r e n t i n d i v i d u a l s .  following quotations  depict  pre-  (the g i r l s '  and thoughts  Each o f t h e four manifestations were experienced  manifestations  husband  g r i e f caused  In  differences:  some h e i g h t e n e d  The p a t i e n t ' s  be d i s c u s s e d  read-  mother.  were more o b v i o u s  death.  b u t t h e two  about n e c e s s a r y  death o f t h e i r  t o some d e p r e s s i o n  their  manifestations.  these differences  from t h e i n t e r v i e w s as w e l l  were  selected to  as t h e s i m i l a r i t i e s .  Depression Sixteen depression  with  than others. described  each  o f the subjects  some d e s c r i b i n g  Table  mentioned  t h e f e e l i n g more  3 shows t h e s p e c i f i c  behaviour.  some a s p e c t o f thoroughly  number o f s u b j e c t s  who  TABLE 3 Behaviours Described  Behaviours Described Insomnia  by Subjects  Subjects: 1 2 3 4 X  x  5  which were I n d i c a t i v e  7 —  6  X  8  9  x  x  of  Depression  10 11 12 13 14 15 16  Total Subjects Describing Specific Behaviour  Anorexia Weight  Loss  Inability to Concentrate  x  x  Restlessness  x  x  x  Hypersensitivity  X  X  Sadness  X  X  Crying  X  X  X  X X  X  X  X  X  2  X X  X  X  X  X  X  13  X  Self-reproach Suicidal  0  Thoughts  Crying During Interview  X  - 65 The of  most commonly d e s c r i b e d  sadness, w i t h  o r w e e p i n g was two  cried  Three  t h i r t e e n of the  cited  during  difficulty  the  by  that their  seven of these  power o f  i n d i v i d u a l s experienced  two  described  subjects three  and  described  exceptions  cribe ings  their  One  wife  more t h a n one  feelings,  more e a s i l y  a general  of  described  Two  and  and  A l l but these  Thirteen of being  f e e l i n g when she  it.  Crying  another some  of restlessness.  was  disturbed.  one  of  these  feelings  three  of  of  of  these  behaviours.  The  sadness.  used d i f f e r e n t able  feeling  described  mentioned  feeling  some w e r e  sadness,  her  of a  subjects  than others.  feeling  husband's b r a i n  loss.  self-reproach.  these  a  and  feeling  concentration  only mentioned  Each of  a  some a n o r e x i a  a large weight  was  subjects  Six subjects  f i v e mentioned  Two  hypersensitivity  behaviour  sixteen mentioning  interview.  s l e e p i n g and  found  -  words t o  to convey these  desfeel-  i n d i v i d u a l s mentioned "down" o r first  being  learned  "upset". of  her  tumours  I w a s r e a l l y r e a l l y u p s e t ; we h a v e n o f a m i l y i n Canada. We a r e h e r e a l l o n o u r own a n d I j u s t s a t h e r e by m y s e l f w i t h f o u r c h i l d r e n and just dying inside. Another lung  subject,  tumour  the  wife  of  a patient with  a  non-resectable  said:  I t ' s a s h a t t e r i n g t h i n g b u t you know deep down i n s i d e y o u r s e l f t h a t w o r r y i n g e x c e s s i v e l y  - 66 i s n ' t g o i n g t o h e l p him. You w o r r y b u t you c a n ' t m a k e i t o b v i o u s . . . . b e i n g a woman y o u h a v e t o p r e v e n t y o u r s e l f from b u r s t i n g i n t o t e a r s a t every l i t t l e thing. Two  daughters  of  sadness.  "I  was s a d a n d mad  less  o f one p a t i e n t  The t w e l v e y e a r  succinct  also".  o l d described  Her s i x t e e n  b u t conveyed  both  expressed  a feeling  i t i n a few words:  year  old sister  was  a similar feeling:  I g u e s s I f e e l weak t o t h e w h o l e s i t u a t i o n 'cause y o u c a n ' t do a n y t h i n g a b o u t i t , I mean I know s h e ' s g o t i t and I know I f e e l r e a l l y t e r r i b l e b u t I don't know, i t ' s a h a r d t h i n g t o s a y , it's,- a t e r r i b l e f e e l i n g a n d i t ' s a l w a y s i n t h e b a c k o f my h e a d k i n d o f , I t r y n o t t o l e t i t b r i n g me d o w n . Three husbands i n t h e sample their  f e e l i n g s i n t o words.  throughout  the interview  serious...I  bit  patient)  was  first  few times  The very the  little father  sick."  was a l s o —  t o work;  near  I was r e a l l y  Another  and t h a t  tears  "You t h i n k  when he s a i d : tough,  feelings during  had had  not  i t s a  bilateral  "There's  I can t e l l  been  you."  o l d patient  their interviews.  "You e x p e r i e n c e  was  d o w n w h e n S. ( t h e  whose w i f e  parents o f a twenty-one year  d i d say:  more  husband i n t h e group could  i t ' sbeen p r e t t y  about  serious  to put  tears  "I'm m o r e w i t h d r a w n ,  h i s feeling precisely but stated:  mastectomies a  stated:  The y o u n g e s t  r i d i c u l o u s going  i tdifficult  One h u s b a n d w h o w a s n e a r  j u s t know i t ' s v e r y b a d , v e r y  e n o u g h f o r me". describe  found  spoke  However,  a f e e l i n g o f shock  and  - 67 confusion, This  and t h e r e  man's w i f e  t o h e r own  i s an u n d e r l y i n g  began t o c r y d u r i n g  feeling  of  despair."  h e r i n t e r v i e w and  reacted  tears:  I'm s u r p r i s e d a t m y s e l f , I h a v e n ' t r e a l l y — I've been concerned and d i s t r e s s e d b u t v e r y h o p e f u l . (I've had) a f e e l i n g o f a n x i e t y f o r two months, b u t i t ' s e a s i n g o f f now. I t ' s something t h a t you need t o l e a r n t o l i v e w i t h . . . . Y o u d o n ' t have much e n t h u s i a s m for doing things. This  same m o t h e r a l s o m e n t i o n e d t h a t  she had experienced  some  crying:: I g e t a l i t t l e weepy a t t i m e s , b u t n o t t o o frequently...1'd l i k e t o be able t o r e a l l y release i t b y s t o m p i n g u p a n d d o w n a n d s c r e a m i n g b u t I'm n o t made t h a t way a n d I c o u l d n ' t , I j u s t couldn't so t h e r e ' s no p o i n t i n s a y i n g i t t w o u l d h e l p . . . . I t obviously helps other people. The  other  Her  twenty-nine year  extensive tears  i n t h e sample  mentioned  also cried  "B.  After  (thepatient)  The m o t h e r s were n o t t h e o n l y crying.  The t w e n t y - e i g h t  the interview.  she had d r i e d h e r  h a s seen no t e a r s o r ones i n t h e sample  year  "I cried,  to  a s someone who was h e l p i n g . "  s e e me  of a fifty-nine  been able  t o remain  b u t n o t around  year  (thep a t i e n t ) . Another  seen by t h e I wanted h e r  spouse, t h e  o l d p a t i e n t mentioned that  c a l m when s h e f i r s t  who  o l d husband o f a p a t i e n t  s t r e s s e d t h e f a c t t h a t h i s t e a r s had n o t been  patient:  wife  during  o l d daughter had had a mastectomy and h a d  lymph node i n v o l v e m e n t .  she remarked:  upset."  also  mother  learned  she had  of the diagnosis  68  -  -  f r o m h e r h u s b a n d b u t "when I g o t home I w a s n ' t q u i t e I was r e a l l y daughters of  upset  The  I'd been c r y i n g .  interviewed  t h e i r mothers*  shared  —  daughter  upon l e a r n i n g stated:  "fight o f fthe tears"  of mother."  after  learning  The two d a u g h t e r s o f one o f t h e i r mother's  "We  b o t h o f us had a good c r y . " to  Three o f t h e f i v e  1 1  c r i e d a t some t i m e  diagnoses.  their tears  oldest  also  as c a l m ,  hashed  This  patient  condition.  i to u t t o g e t h e r and  daughter  also  spoke o f h a v i n g  and "keep from b r e a k i n g  The t w e l v e y e a r o l d d a u g h t e r  down i n f r o n t  o f another  patient  said: W e l l , a t f i r s t I was c r y i n g a l o t . . . . W h e n I go t o b e d , s h e comes down t o s a y g o o d n i g h t a n d s h e ' s so warm and c o m f o r t a b l e and a f t e r s h e l e a v e s I j u s t cry....Now when I g e t i n t o t r o u b l e I c r y a t t h e v e r y l i t t l e s t thing. In subjects of  addition  t o ' a f e e l i n g o f sadness  mentioned other  symptoms o f d e p r e s s i o n .  i n s o m n i a was d e s c r i b e d  describing  the period  tomy s t a t e d : four  hours  period  a day."  said:  twenty-one year disturbed there  was a p r o b l e m ,  sleep  o l d patient  I was o n l y  v e r y much."  admitted  shortly after learning  was an i n a b i l i t y  One  shortly after h i swife's  Another husband d e s c r i b i n g  " I didn't  Some  by s i x o f the subjects.  o f time  "Sleeping  and c r y i n g ,  t o sleep  that  some  degree husband mastec-  getting  about  the similar  The f a t h e r h i s sleeping  of the was  o f h i s son's d i a g n o s i s : at the early point."  time  "Yes,  Another  69  -  p a t i e n t ' s mother described  -  a similar  difficulty:  I d i d a l o t o f t h i n k i n g t h e f i r s t few n i g h t s , I don't t h i n k anyone s l e p t too w e l l but I t h i n k now y o u l e a r n t o l i v e w i t h i t . The  twenty-two year  night  she  most o f the  learned  the  night  house."  ized  o l d daughter of  of her and  Another  It's  too  well.  since  Several trate  or  a  subject,  subjects  this  was  eating  not  —  one  f o r her  t u m o u r was  ear  " I was  up  awake  prowling  around  a patient hospital-  stated:  "I  didn't  open f o r t h e  children.  mentioned  an  inability  concen-  The  two  and  One  f u s s i n g about; you  times.  wives mentioned  The I  other  find  to  mothers  r e a c t i o n most c l e a r l y .  behaviour  the  vulnerable."  t h i n k i n g a b o u t w h a t I'm Two  of  treatment  c e r t a i n l y wasn't r e l a x e d . "  you're d i s t r a c t e d at  often  wife  restlessness.  sample d e s c r i b e d  I  I'm  the  his  we're  f e e l i n g of  n i b b l i n g and  then  I s o r t o f k e p t one  a b i g h o u s e and  described  mother's d i a g n o s i s :  f o r s i x weeks d u r i n g  sleep  a patient  in  the  said,:  "I  k n o w , I was  remarked:  "you  —  find  I make m i s t a k e s when  I'm  doing." feelings of  toward her  guilt  or  husband before  self-reproach his  brain  discovered:  T h e w o r s t t h i n g was t h a t w e ' d been having a few f i g h t s b e f o r e a n d I was — I was g e t t i n g t h e g u i l t s — t h a t i t was s o m e t h i n g t o d o w i t h a l l t h i s a n d — i t ' s a s t r a n g e f e e l i n g y o u go t h r o u g h .  The by  other the  w i f e was  patient.  70  concerned  She  -  about her  anger  at being  deserted  said:  I'm a f r a i d I h a v e c e r t a i n g u i l t f e e l i n g s ' c a u s e my w o r s t r e a c t i o n w a s ' I ' l l be w o r k i n g f o r e v e r ! ' I t ' s s e l f i s h but I — y o u do g e t t h e f e e l i n g t h a t the e a s i e s t p a r t i s f o r him. He w o n ' t b e t h e r e t o c o p e w i t h t h e r e s t o f t h e p r o b l e m s as t h e y come.  least  two  Most of the  subjects  or  the  different  three  times  during  found d i f f e r e n t  Heightened  of  symptoms and  the  interview.  words t o d e s c r i b e  of  at  often described  them  at  As  seen,  each  least  one  their  behaviours  shows t h a t  can  indicative  the  subjects  described  of heightened  most commonly d e s c r i b e d  behaviour  by  of the  to  the  seventeen).  p a t i e n t was  l e a r n as much as  O n l y "three alone. others ities  thought of they  could  of the  often  described  discussed i n view of  mentioned  that  could  be  their the  their  ignored  inability  patient  nine  to  in social c a r r y on  leave  the  devel-  mentioned a  the  patient and  business  and  responsibilities  and  that  i t was  these  two  responsibil-  Several  felt  need  disease.  patient's condition. personal  4  (experienced  activity other  of  Table  described  patient's  wanting to  a disinterest  was  subjects  and  about the  s u b j e c t s mentioned not  Two  not  Ten  at  preoccupation.  a p r o t e c t i v e a t t i t u d e toward the  that  be  feelings.  opment o f eleven  a combination  Preoccupation Seventeen of the  the  experienced  subjects  responsibilities  TABLE Described  Behaviours  Behaviours  „ , . . Subjects: 1 2 3,4  Ignores responsibilities other than patient  4  I n d i c a t i v e o f Heightened  5 6 •  x  7  8  Preoccupation  9 1 0 1 1 1 2 1 3 1 4 1 5 1 6 17 .  x  0  x  x  x  x  x  x  x  x  x  x  10  P a t i e n t i s main topic of conversation  (  i—  1  i 0  Discontinues sociaii a c t i v i t i e s  x  x  D i s l i k e s o r attempts to prevent patient being alone  x  S e e k s new i n f o r m a t i o n about p a t i e n t ' s diagnosis Has d e v e l o p e d protective attitude toward patient  f  2  Cancels planned v a c a t i o n away from p a t i e n t Continually thinks of patient  o  T O T A L - #'s QTT +• Subjects. Describing specific behaviour  x  X  X  x  x  x  x  x  X  X  X  x  X  x  x  X  X  X  X  X  2  x  3  x  9  11  - 72 t h a t had h e l p e d them t o d e a l w i t h t h i s subjects or  i n this  finding  that  conversation  —  sample mentioned  cancelling  t h e p a t i e n t was u s u a l l y  None o f t h e  planned  their  No m a t t e r by these  by both  study.  how i t was e x p r e s s e d , seventeen  vacations  main t o p i c o f  two b e h a v i o u r s which were mentioned  of the subjects i n the p i l o t  identified  crisis.  t h e common  feeling  s u b j e c t s was a n a r r o w i n g  perspective w i t h t h e focus o f t h e i r  of their  a t t e n t i o n becoming t h e  patient. The testicular  parents o f t h e twenty-one  year  o l d man w i t h a  t u m o u r d e s c r i b e d how t h e y h a d f o u n d  i n people  and t h i n g s o t h e r than  patient's  father  their  interest  the patient had decreased.  The  said:  We're c o n c e r n e d  w i t h h i m and no one  else....  W o r r y i s w i t h y o u a n d no m a t t e r how h a r d y o u d i s p e l i t from your mind, you can't. (There i n t e r e s t i n some t h i n g s b u t ( y o u a r e ) d r i v e n n e c e s s i t y and o b l i g a t i o n s t o c o n t i n u e and t o things. H i s m o t h e r ' s r e a c t i o n was  t r y to is) disby do o t h e r  similar:  You don't have any e n t h u s i a s m f o r d o i n g a n y t h i n g beyond t h e essentials....We haven't i n v i t e d people over, we l i k e t o h a v e f r i e n d s i n f o r d i n n e r b u t I l i t e r a l l y haven't f e l t l i k e i n v i t i n g anyone. I t just didn't seem l i k e I h a d t i m e t o do i t , w h i c h i s n ' t q u i t e a c c u r a t e b u t we d i d n ' t . . . . W e w e r e t o o t u r n e d i n a n d c o n c e r n e d w i t h o u r s e l v e s I guess t o be l o o k i n g outward w h i c h i s o u r u s u a l p a t t e r n . . . . I f i n d I'm d i s t r a c t e d a t t i m e s a n d m a k e m i s t a k e s w h e n I'm n o t t h i n k i n g o f w h a t I'm d o i n g . My m i n d i s n o t u p t o i t s b e s t c a p a c i t y s i n c e a l l t h i s h a s h a p p e n e d . E . ( t h e p a t i e n t ) i s o n my m i n d a g r e a t deal of the time.  The  third  parent  i n the  ment o f  activity.  free  t h a t we  so  thing  she  subjects,  could  needed.  So  their  habits  who  h i s own  -  sample a l s o mentioned said:  in  (to the  w e ' r e home a l i t t l e  to  indicated that  more."  or  do  Two  they too  curtail-  ourselves  clinic)  spend more t i m e w i t h  business,  a similar  "We've b e e n k e e p i n g  b r i n g her  both husbands,  some o f ran  She  73  had  their  any-  other changed  wives.  One,  stated:  I s l o w e d down...I d i d n ' t t a k e on any e x t r a w o r k . I s p e n t m o r e t i m e a t home, I d i d n ' t h u s t l e f o r b u s i n e s s . I f i t came, I t o o k i t b u t I d i d n ' t go o u t a f t e r i t . I s t a y e d home m o r e . The  other  a l s o changed h i s work h a b i t s  somewhat:  I r a r e l y u s e d t o g e t home b e f o r e s e v e n and this affected evening a c t i v i t i e s . Since the operation I've made e v e r y e f f o r t t o be home b y f i v e - t h i r t y and e v e n t h o u g h I t a k e w o r k home, I s e l d o m o p e n i t . But, I get up e a r l i e r and o f t e n l e a v e b e f o r e s h e ' s up; i t ' s a trade o f f , breakfast for evenings. I have c e r t a i n commitments t h a t c a n ' t be h a n d e d on t o o t h e r s . I have u n l o a d e d some t h i n g s o n t o o t h e r s . . . . I t h i n k i t ' s f a i r t o say t h a t I have been more s y m p a t h e t i c t o her p r o b l e m s , a l l o f them not j u s t t h e cancer, s i n c e her d i a g n o s i s . Two  daughters  mothers were w i t h mentioned that her especially  i n the  interviewed  found t h a t  them c o n s t a n t l y . m o t h e r was  on  The  her  m o r n i n g when she  thoughts of  twenty-two year  mind most o f  attended  the  the  clinic  their  old  day,  but  for  treatment: I ' p h o n e Mom e v e r y d a y w h e n s h e g e t s home. I even s t o p w h a t I'm d o i n g t o ' p h o n e h e r a n d i f s h e ' s n o t home when she u s u a l l y i s , I g e t worried.  • - 74 The by  sixteen year this  -  o l d daughter o f another patient  was  disturbed  preoccupation.:  I t ' s a t e r r i b l e f e e l i n g and i t ' s always i n t h e b a c k o f my h e a d , k i n d o f . I t r y n o t t o l e t i t b r i n g me d o w n . Sometimes I f e e l l i k e n o t d o i n g anything, I j u s t f e e l l i k e I want t o f o r g e t about e v e r y t h i n g . Others were n o t so e x p l i c i t This  last  subject's  twenty-one year o l d s i s t e r  home a n d m e n t i o n e d t h a t her  mother more o f t e n  old  daughter  habits "R.  i n this  had changed  about t h e i r  her v i s i t s  than before same  since  (her step-father)  family  her surgery.  h e r mother's  illness  three  of a patient  toward h e r husband had also  stressed  changed  and she  year  diagnosed:  and i t gets  right."  his  called  some o f h e r  had been  that her  since  from  The t w e l v e  a l w a y s u s e d t o c o r r e c t me  s o now I d o e v e r y t h i n g  o l dwife  away  indicated that  my m o t h e r ' s n e r v e s , year  lived  had increased  also  preoccupation.  The  on ,  twenty-  attitude  surgery:  I  d e c i d e d t o care, more about h i m and t o do e v e r y t h i n g t o make h i m c o m f o r t a b l e a n d f e e l h e h a s m o r e time t o rest....I'm always t h i n k i n g about t h e end o f t r e a t m e n t and I j u s t t h i n k t h a t h e ' l l be okay and e v e r y t h i n g w i l l be a l l r i g h t . A common r e a c t i o n learn wife  a l l that  they could  began reading  symptoms b e f o r e getting  little  among t h e s e  about t h e p a t i e n t ' s  about p o s s i b l e  he was d i a g n o s e d . information  subjects  causes  was  a desire to  condition.  One  f o r h e r husband's  She s a i d  from t h e doctor  that  he had been  and so :  -  75 -  You're going t o read and f i n d o u t f o r y o u r s e l f . . . I w e n t d o w n t o t h e l i b r a r y a n d t o o k o u t some m e d i c a l books and read them t o f i n d o u t e x a c t l y what was what. Even t h e fourteen for  year o l ddaughter  more i n f o r m a t i o n  than  s h e was g i v e n .  what was h a p p e n i n g t o h e r m o t h e r encyclopedia." with of  breast  cancer had taken  She wanted t o know  so she "looked  i t up i n t h e woman  s e v e r a l books on t h e subject o u t  and had a l s o  than books.  subjects  attended  a .Cancer Forum  held  special  ed  information  seeking  stressed  on breast  she knew."  from  One p a t i e n t ' s w i f e  a friend:  " I went t o see a  and asked h e r t o t e l l  The t w e n t y - e i g h t  w i t h melanoma a l s o  stressed  friends:  a lot of listening  "I've  t o other  directly  was  so concerned  one  Sunday,  a  mentionlady  me  every-  year o l d husband o f a p a t i e n t  t h a t h e was i n t e r e s t e d i n t h e knowdone a l o t o f a s k i n g  questions  and  people."  Two s p o u s e s m e n t i o n e d t h a t information  o f sources  cancer.  f r o m t h e c h u r c h who was a n u r s e  ledge o f h i s  the value  Two d a u g h t e r s o f o n e p a t i e n t h a d w a t c h e d  television  thing  t h e need  i nthe city. Some o t h e r  other  felt  The mother o f t h e t w e n t y - n i n e y e a r o l d  the public library  recently  of a patient  they had sought  from t h e a t t e n d i n g  physicians.  about h i s l a c k o f knowledge t h a t  I phoned t h e surgeon  a t home b e c a u s e  further One h u s b a n d  " I even I was s o  phoned, worried."  The  other,  that and  she the  the  had  wife  of  the  76  -  patient  sought i n f o r m a t i o n  family  with  lung  from the  cancer  clinic's  indicated  specialist  doctor:  I a s k e d q u e s t i o n s o f D r . D. (the s p e c i a l i s t ) b u t t h e answers f e l l l i k e l e a d b a l l o o n s so I s t o p p e d a s k i n g . . . . I have been t o see t h e d o c t o r (family physician). I went t o see him t o f i n d out what I was u p a g a i n s t , w h a t I h a d t o l o o k f o r . In attention  some c a s e s ,  for the  were changed needs or  the  patient  i n d i v i d u a l ' s thoughts  i n order  desires  then,  and  t o be an  became t h e  and  actions;  more a t t e n t i v e t o t h e  abundance o f  information  focus some  of  habits  patient's was  sought  by  several individuals.  Anticipation  o f Modes o f  Table  5 shows t h a t  some a n t i c i p a t i o n o f by  the  patient's  without in  the  their  style.  about remarriage bibee c h a n g e s indicated  i n the  that  out  and  l e a r n more about by  the  and  patient.  of  five  four  some o f  the  their  take  these the  discussed necessitated  concern about  possibility  spouses mentioned  relationships.  begun t o of  their  discussed the  subjects  t h a t w o u l d be  discussed  family  one  the  S i x mentioned  Four of  t h e y had  responsibilities to  and  nine  readjustments  death.  patient  life  Readjustment  over  three  other  thoughts  of  some about  life changes  thoughts possi-  Three i n d i v i d u a l s some o f  the  also described  chores normally  patient's a  need  carried  TABLE 5 Described  Behaviours  I n d i c a t i v e o f A n t i c i p a t i o n o f Modes o f R e a d j u s t m e n t  1  Caring  f o r remaining  Changes i n l i f e  2  8  3  0  parent  style  x  5  x  Thoughts o f remarriage  X  X  Attempts t o l e a r n about responsibilities of patients Takes over of patient  responsibilities X  Changes i n f a m i l y relationships Concern without  TOTAL Number of Subjects d e s c r i b i n g speci f i c behaviour  Subjects:  Behaviour  about l i f e patient  X  X  i X  x  x  x  X  4  While in  this  area,  some s u b j e c t s  others  she  78  had  talked openly  merely hinted  at them.  ified  that  d e l i b e r a t e l y thought  these  anticipated readjustments while  these thoughts were t r a n s i e n t The was  the  wife  resectable.  one of  who  and  stressed  a patient with  She  about t h e i r One  about  the  subject  and  others  thoughts spec-  planned  for  indicated  that  unplanned.  the lung  need t o  consider  these  things  c a n c e r w h o s e t u m o u r was  non-  said:  As t o m a k i n g p r e p a r a t i o n s , t h a t I h a v e n ' t d o n e . I ' v e t h o u g h t t h e s u b j e c t t h r o u g h as t o w h a t I ' l l do when h e ' s g o n e . . . . I ' v e d e c i d e d w h a t I c a n do f i n a n c i a l l y and h o p e f u l l y t h a t w i l l w o r k . I've d e c i d e d t o r e n t p a r t o f my h o u s e a n d h o p e f u l l y I c a n c o p e . The  wife  of  the  many q u e s t i o n s isfactory  p a t i e n t who about the  had  a b r a i n tumour had  future but  had  not  asked  a r r i v e d at  herself  any  sat-  answers:  A l l I c o u l d t h i n k o f was i f h e g o e s , I ' v e got f o u r l i t t l e c h i l d r e n and r e a l l y t h i s i s a company house — we h a v e a l i t t l e c o t t a g e o u t i n t h e country — a n d I was t h i n k i n g w h a t do. I d o , w h e r e d o I g o , w h a t h a p p e n s t o us and — I haven't worked s i n c e I . was m a r r i e d a n d t h a t ' s f i f t e e n y e a r s a g o . I haven't g o t a c l u e what goes on. I don't even have a bank a c c o u n t o r a n y t h i n g and i f he g o e s w h a t d i d I do f o r money. A l l o f t h e s e a w f u l , a w f u l t h o u g h t s , you fight them o f f and t e l l y o u r s e l f t o s t o p t h i n k i n g l i k e t h a t b u t t h e y come i n . The care  husband of for his  one  patient  fourteen  year  mentioned thoughts old  daughter:  about  arranging  -  79  -  I f something d r a s t i c happened, I ' d have t o get a housekeeper t o look a f t e r t h i n g s and J . (the daughter)....These thoughts j u s t went t h r o u g h my m i n d , i t w a s n ' t a p o s i t i v e t h i n g , n o t a c o n s c i o u s effort. Another husband words,  b u t he  found i t d i f f i c u l t  t o put h i s thoughts  into  said:  We s t a r t e d f r o m s c r a t c h w i t h n o t h i n g a n d we — w e l l , t h e house i s n o t q u i t e p a i d f o r y e t b u t we're — I mean now t h a t t h i n g s w o u l d g o e a s i e r a n d w o u l d go b e t t e r , s o m e t h i n g l i k e t h i s happens. I mean i t t o o k t w o t o b u i l d a l l t h i s u p , t o h a v e a h o u s e a n d a home; I c o u l d n ' t d o i t a l o n e . Some s p o u s e s The  thirty-three  cerned  considered the p o s s i b i l i t y  year o l dhusband  of remarriage.  o f one p a t i e n t was a l s o  con-  about h i s s t e p - c h i l d r e n :  I w o r r i e d t h a t she might d i e and t h a t t h e (older) k i d s w o u l d have t o go b a c k t o t h e i r o t h e r f a t h e r and then I thought w e l l , t h a t ' d be okay b u t then I thought w e l l w h a t w o u l d I d o ? Who'd l o o k a f t e r C. ( t h e y o u n g e s t ) w h i l e I go t o work? I thought — I d o n ' t want t o go a n d l i v e w i t h my m o t h e r . . . I t h o u g h t m a y b e I ' l l m a k e t h i n g s a l i t t l e d i f f e r e n t n e x t t i m e , I won't g e t m a r r i e d . The  husband  o f another patient  but he mentioned bility  d i d n o t have  children  t h a t he and h i sw i f e h a d d i s c u s s e d  t o consider, the possi-  of h i s remarriage:  O n e a l w a y s t h i n k s a b o u t w h a t w o u l d h a p p e n i f we w e r e n ' t a s l u c k y a s we t h i n k w e ' r e g o i n g t o b e . . . i t d i d come u p , d i s c u s s i o n o f w h e t h e r I w o u l d m a r r y a g a i n , I s a i d no because I ' d p r o b a b l y be d i s a p p o i n t e d . . . . These t h o u g h t s a r e i n e v i t a b l e e v e n t h o u g h I'm v e r y p o s i t i v e .  -  A  fifty-nine  year  80  -  old wife married  for thirty  years  expressed  s i m i 1 a r thought s: I M. — M. I but I quite him.  d i d t h i n k about what l i f e would be w i t h o u t I d i d n ' t want t h a t . . . . I don't want l i f e w i t h o u t don't t h i n k I would want t o get m a r r i e d a g a i n , don't t h i n k I'd want t o l i v e alone; but I'm happy w i t h t h e husband I've g o t , so I ' l l keep  Thoughts o f readjustments patients. cancer  The  were not  mother of the twenty-nine  of the breast expressed  daughter's  confined to the  d e a t h m i g h t have on  her  year  concern  the  spouses  old patient  about the  of with  effect  her  family:  We s o r t o f s a t a r o u n d h e r e a n d t a l k e d ; s h e h a s a nine year o l d daughter. We t a l k e d a b o u t t h a t . She's d i v o r c e d f r o m h e r h u s b a n d and o f c o u r s e has c u s t o d y b u t you t h i n k o f a l l t h e s e t h i n g s . He h a s , y o u m i g h t s a y , b e e n n o g o o d ; now w h e t h e r h e w o u l d s h o w u p a t some p o i n t a n d d e c i d e t h a t h e s h o u l d b r i n g u p t h e little girl — o f c o u r s e t h a t ' l l a l l become a l e g a l problem — I d o n ' t know. The p a t i e n t had  not  much d e t a i l . possibility said:  expressed be  what  and  here am  sixteen  However, t h e y of l i f e  am  year  o l d daughters  considered the p o s s i b i l i t y  i t similarly:  I going to  and do."  one  of readjustments  t h a t t h e y had  mother.  of  The  thought  twelve  without her."  "I've thought i f she's  not  Her  older  year  here  the  old I  sister  a b o u t w h e t h e r Mom's  g o i n g t o be  in  of  to l i v e . . . e v e r y t i m e I look at her,  I g o i n g t o do  or not,  implied  without their  " I j u s t want her  t h i n k what  to  twelve  then  going I  think  - 81 While of  their  be  seen  some o f t h e s e  readjustment that  each  p a t i e n t would  Reviewing  needs i n more d e t a i l  o f them r e c o g n i z e d t h a t t h e d e a t h  necessitate  Table  relative's  death.  the  die.  left  i n relation their  One o f t h e s e  to their  concern  q u e s t i o n e d i n some w a y Some e x p r e s s e d  hinted  at their  relative's  about  possible  her concern  i l l n e s s and h o s p i t a l i z a t i o n .  described  their  feeling  considered death  relative's  anticipatory  their  had  thirteen grief  thoughts.  clearly.  death:  Four  they might  about h e r subjects  c a n c e r was e q u i v a l e n t t o d e a t h a n d  t o b e a p r o b a b l e outcome o f t h e i r  illness. While  of  fears.  when a n d how t h e p a t i e n t  final  thus  their  need t o know what t o e x p e c t i n  three also mentioned  that  subjects  the possibility of their  husband's  had  of the  lives.  thirteen  forthe patient.  subjects discussed their  mentioned  that  of considering  openly while others merely  future  each  i n their  A l l o f these thirteen  l e n g t h o f time  Three  some c h a n g e s  6 i t c a n be seen  s h o w e d some i n d i c a t i o n  thoughts  than others, i t can  Forms o f Death In  the  subjects considered the p o s s i b i l i t y  Two  subjects experienced this manifestation  i n some w a y , o n l y a f e w s p o k e d i r e c t l y o f spouses  The t h i r t y - t h r e e  had a r a d i c a l  involvement  said:  expressed  year  mastectomy  their  feelings  quite  o l d husband o f a p a t i e n t  a n d who h a d e x t e n s i v e l y m p h  who node  TABLE 6 Behaviours  Behaviour  Indicative o f Reviewing  Subjects: 1 2 3 _  4  5  6  7  Forms o f Death  8  9  10  11  12  13  TOTAL Number o f Subjects describing specific Behaviour  Seeks i n f o r m a t i o n a b o u t when t h e p a t i e n t may d i e  x  x  x  3  Seeks i n f o r m a t i o n re: how p a t i e n t may d i e  x  x  x  3  x  13  Questions length of time l e f t with patient  x  x  x  x  x  x  x  x  x  x  x  x  K> I  Expressescconcern re: patient's final hospitalization Considers death as c o n s e q u e n c e of cancer  x  x  x  X  X  1  4  -  83  -  I t h i n k one o f t h e b i g g e s t f e a r s i s i fshe i s g o i n g t o d i e t h e n y o u want h e r t o go f a s t . You don't want h e r one o f t h e s e l i n g e r i n g d e a t h s where you s e e h e r d i s i n t e g r a t e i n t o nothing. The  wife  of the patient  obviously She  with  h a d many t h o u g h t s  the non-resectable  lung  tumour had  about h e r husband's p o s s i b l e  death.  stated: I f h e a s k e d me t o d o a n y t h i n g t o h e l p h i m e n d the t h i n g t o w a r d s t h e e n d , I w o u l d do i t . Perhaps t h a t ' s t h e wrong a t t i t u d e b u t I can't w i s h s u f f e r i n g on anyone and h i s p r i m a r y s o u r c e i s l u n g and h e p r o b a b l y w i l l s u f f e r . . . . I f a p a t i e n t doesn't want t o g o t h r o u g h w i t h i t I d o n ' t t h i n k we s h o u l d m a k e t h e m .  She  also mentioned her concern  about h e r a b i l i t y  t o care  for her  h u s b a n d when he b e g a n t o d e t e r i o r a t e : F o r t u n a t e l y my j o b i s f l e x i b l e a n d i t w o u l d b e p o s s i b l e t o k e e p h i m a t home....(My most i m p o r t a n t c o n c e r n i s ) c a n I cope w i t h t h e a c t u a l i l l n e s s when i t gets worse. Can I s t a y d i g n i f i e d and c a l m — t h i s i s t h e only t h i n g I pray about. The work I c a n cope w i t h . I t ' s your b r a i n that has troubles; can you be s t r o n g enough t o c a r e f o rh i m w i t h o u t blubbering. Most o f t h e subjects express  some c o n c e r n parents  were n o t t h i s  d i r e c t , butd i d  a b o u t when o r how t h e p a t i e n t  The  three  i n t h e sample  a l l described  The  mother o f t h e twenty-nine year o l d p a t i e n t  might d i e .  similar feelings. said:  I f anyone's g o i n g t o beat i t i t ' s h e r , u n l e s s there i s t o o much t o c o p e w i t h . . . I t h i n k b a s i c a l l y a s l o n g as s h e ' s w e l l a n d d o e s n ' t s u f f e r t o o much p a i n and m i s e r a b l e p r o b l e m s t h a t c a n come u p — b u t b a s i c a l l y w e ' r e l o o k i n g on t h e b r i g h t s i d e n o t t h e d u l l s i d e , so whether  -  84  -  she h a s many y e a r s t o l i v e o r a few y e a r s t o l i v e o r w h e t h e r she has l o t s o f p a i n and m i s e r y , I m e a n , we d o n ' t k n o w , y o u ' v e g o t t o t a k e i t a s i t comes. The  other  mother i n the  sample  a l s o had  fears  about her  child's  future: You t r y and s h u t i t o u t o f y o u r m i n d . That i t may p o s s i b l y h a v e s p r e a d , t h a t t h e r e may b e future o p e r a t i o n s f o r h i m , t h a t h e may n o t b e t h e strong h e a l t h y p e r s o n i n t h e f u t u r e t h a t h e i s now. You j u s t h o p e i t w o n ' t come t o t h a t , y o u p r a y t h a t i t w o n ' t , t h a t h e ' l l be s p a r e d t h a t much o f a p r o b l e m . You t r y n o t t o t h i n k a b o u t i t t o o o f t e n . ...The m e r e t e r m c a n c e r t o us i n t h e p a s t h a s b e e n f r i g h t e n i n g and v e r y o f t e n i t ' s b e e n a d e a t h s e n t e n c e so u n l e s s you k e e p h e a r i n g about t h e p r o g r e s s and t h e c h a n g e s i n t r e a t m e n t y o u go b a c k t o t h a t *Oh, I w o n d e r how l o n g i t w i l l b e ' s o r t o f t h i n g , how l o n g a l i f e c a n y o u h a v e w i t h t h e c a n c e r . This  subject's  husband  also  indicated that  he  thought of  similar  things: T h e r e i s an u n d e r l y i n g f e e l i n g o f d e s p a i r i n t h a t , urn, t h e r e was t h i s r i s k o f a l l t h i s u p b r i n g i n g and t r a i n i n g and t h e l o v e and c a r e t h a t s gone i n t o b r i n g i n g u p a y o u n g man, i s a l l a t r i s k and s u d d e n l y ; and i t c a n be d e v a s t a t i n g f o r a w h i l e . . . . I v e n e v e r p r a y e d as much o r m o r e as I h a v e o v e r t h e l a s t m o n t h and a t t h i s p o i n t i n t i m e we f e e l o u r p r a y e r s h a v e b e e n a n s w e r e d . . . . We're c o n c e r n e d a b o u t i t b e i n g a s e r i o u s i m p a i r m e n t o f his health. There i s the p o s s i b i l i t y , n a t u r a l l y , that h e may h a v e some f u r t h e r p r o b l e m f r o m i t , we recognize t h a t , we t h i n k t h a t t h e r i s k f a c t o r a t t h i s t i m e i s l o w , b u t t h e r e i s a l w a y s an e l e m e n t o f i n s e c u r i t y o r u n s u r e ness i n t h i s type of disease. 1  1  (  One he  had  husband's  thought of  the  a t t i t u d e and  possibility  mood seemed t o  of h i s wife's  indicate  death but  he  that  85  -  found i thard tant  very he  t o put i n t o words.  c o n c e r n was  Earlier  " t h a t we  stay together  enough  had had on t h e e f f e c t "We'll  ever....I'm certain  f o r me."  of this  d a y s when wife  I f only I could  —  just  on t h e i r  serious,  thoughts future  be t o g e t h e r  come o u t w i t h  i t—  he  more  than  I have  no, I don't know what t o s a y . "  of the patient with  need t o know what t o e x p e c t  as p o s s i b l e . "  When a s k e d w h a t  diagnosis  I could  just  as l o n g  impor-  " I know i t ' s v e r y  do a l o t more t o g e t h e r ,  stuck.  The her  He s a i d t h a t h i s m o s t  i n t h e i n t e r v i e w he had s a i d :  bad and t h a t ' s  said:  -  a b r a i n tumour  expressed  i n the future:  The m a i n t h i n g i s I j u s t w i s h someone w o u l d t e l l us so I ' d know what's gojing on — w h e t h e r t h i s t h i n g c a n c o m e u p a g a i n ; n o o n e h a s t o l d me a n y t h i n g . I've asked but i t ' s s o r t o f evaded....I can l i v e w i t h t h e day t o day t h i n g s . Before could  h e r husband's  she thought  " I f he's operated  go o n t h e t a b l e o r h e c o u l d h e m o r r h a g e a n d go  After h i s surgery can  surgery  ever  be as b a d Another  patient,  expressed  and d u r i n g again.  treatment  she remarked:  on he  anytime." "Nothing  1 1  s u b j e c t , t h e husband o f a f o r t y - n i n e year o l d a similar  d e s i r e t o know what t o  expect:  I don't long range myself. I t r yto.take things as t h e y come. You can't stop f a t e . . . . I wonder where i s i tgoing t o q u i t . . . . I wish the doctors would give us more i n f o r m a t i o n , I j u s t want t o know what t o expect. This any  subject's negative  twenty-two year thoughts:  o l d daughter  s a i d she fought o f f  86  -  -  A t t h e v e r y b e g i n n i n g i t was t e r r i b l e , i n s i d e me....She ( t h e p a t i e n t ) h a d t o g o t h r o u g h h e r own m o t h e r ' s d e a t h w i t h b r e a s t c a n c e r and i t was a l o n g , drawn o u t d e t e r i o r a t i o n . During that f i r s t night, I k e p t s a y i n g s h e ' s g o i n g t o b e a l l r i g h t b u t my eyes f i l l e d w i t h water and I k e p t t e l l i n g m y s e l f t h a t t h e r e w e r e s o many t h i n g s t h e y c o u l d d o now. Her  younger  sister  said  c a n c e r meant i n s t a n t In  another  i t plainly:  death." f a m i l y t h e husband openly  about h i sw i f e ' s p o s s i b l e  five life tion  death.  He  denied  any thoughts  said:  I don't b e l i e v e t h i s b u s i n e s s o f two years o r y e a r s o r w h a t e v e r a n d I'm n o t p r e d i c t i n g my o r hers o r ours on t h e p o s s i b i l i t y o f a t e r m i n a i n a short time.  However, he a l s o  said:  I f you do have two another working day; l e t two y e a r s o r f i v e y e a r s not blow e v e r y t h i n g b u t Two o f t h i s death.  " I was s c a r e d and w o r r i e d ;  y e a r s , why be c o n c e r n e d a b o u t ' s be p r a c t i c a l , i fi t ' s o n l y l e t ' s r e a l l y enjoy ourselves, enjoy every minute.  man's t h r e e s t e p - d a u g h t e r s  The s i x t e e n y e a r  feared their  mother's  o l d said:  I k n o w I ' v e h e a r d h e r s a y t h a t s h e ' s n o t s u r e how long she has t o l i v e — a couple o f years o r something -...and t h a t ' s w h a t ' s h i t me m o s t o f a l l . . . t h a t i t c o u l d be she d o e s n ' t have t h a t l o n g t o l i v e — that's hard t o believe too...it's really a terrible feeling, thinking t h a t w i t h o u t y o u r own m o t h e r y o u f e e l s o a l l a l o n e . . . t h a t ' s been about t h e worst o f t h e whole t h i n g . Her  younger  sister  she  normally would  said:  " I don't  think  she'll  so I j u s t want h e r t o l i v e . "  live  as l o n g as  While their  thoughts  only  two o f these  subjects  explicitly  about t h e p o s s i b l e death o f t h e i r  others  i n d i c a t e d i n some w a y t h a t  bility  and t h a t  they  had thought  they  described  relatives, the  had considered  this  possi-  a b o u t when o r how t h e p a t i e n t  might d i e .  Additional  Common In  Reactions  addition to the manifestations  of anticipatory grief  described  a b o v e , many o f t h e s u b j e c t s  reactions  upon l e a r n i n g o f t h e i r  relative's  Fear.  frequently expressed  was  fear.  One o f t h e m o s t  Several  subjects mentioned  tion  a n d some e x p l a i n e d  term  "cancer".  afeeOj^ry a f t e r  This  this  this  other  common  diagnosis.  aspect  emotions  of their  diagnosis  clinic.  reac-  f e a r was o f t e n r e l a t e d t o t h e  r e a c t i o n seemed t o b e most p r o m i n e n t  the i n i t i a l  seen a t t h e cancer described  that  experienced  and b e f o r e  The t w e n t y - e i g h t  the patient year  immediwas  o l d husband  the feeling:  As s o o n a s a n y o n e m e n t i o n s c a n c e r , y o u t h i n k you're going t o d i e , r i g h t ? You s t a r t t h i n k i n g about people dying, you get a l o t o f gray h a i r s , eh?...It was f e a r , y o u c a n ' t e x p r e s s t h a t when y o u ' r e a f r a i d someone i s g o i n g t o d i e . Another husband terrible,  said:  "Well,  i t was v e r y  f r i g h t e n i n g . . . i t *s  i t ' s a frightening thing." The  only  f a t h e r i n t h e sample  stated:  88  -  -  You n a t u r a l l y h a v e a f e e l i n g o f s h o c k and confusion...does t h i s s i g n a l a person's high r i s k of dying from t h i s disease?...We've g o t over t h a t f e e l i n g o f fear o r f r i g h t from t h e t h i n g because we've f i l l e d i n w i t h k n o w l e d g e . This  man's w i f e  labelled the feeling -  panic:  When i t w a s d i a g n o s e d a s c a n c e r , r e a l p a n i c s e t s i n b u t a l s o numbness t o o , b e c a u s e y o u d o n ' t want t o b e l i e v e t h a t t h a t ' s what i t i s . . . . T h e mere term, c a n c e r , i s f r i g h t e n i n g and has been a d e a t h sentence i n t h e past. The  fourteen  y e a r o l d d a u g h t e r o f one p a t i e n t  described  i t this  way: I g u e s s I was w o r r i e d and s o r t o f s c a r e d and stuff. You know, c a n c e r ! Ah! Instant death. But now i t ' s d i f f e r e n t , I ' v e l e a r n e d m o r e a b o u t i t . Another p a t i e n t ' s wife . . . I was r e a l l y  said:  getting quite  daughter o f a patient  "He w a s r e a l l y panicky."  s i c k and I was  scared  The t w e n t y - o n e y e a r o l d  said:  I t r e a l l y t o o k me, y o u k n o w , I g o t a l l c h o k e d u p and I was t r y i n g t o r e m a i n c a l m . . . I c o u l d n ' t , I d i d n ' t , i t was s u c h a s h o c k . One w i f e "The  stated  immediate  that  h e r immediate  f e a r was b a s e d o n o t h e r  rather  t h a n w h a t my h u s b a n d h a s . "  said:  " I was k i n d  her,  f e a r was n o t b a s e d o n  o f scared,  experiences with  Another  I guess  I was  subject,  Thus,  f e a r was  cancer  a husband  just worried  y o u know, y o u d o n ' t know t h a t much about  reality:  about  cancer."  an e a r l y r e a c t i o n t o t h e d i a g n o s i s  was e x p e r i e n c e d b y s e v e r a l  of the subjects.  and  -  Hope. jects  learned  disease.  more about t h e i r  After  some c o n t a c t  i n t h e need  or faith  seemed t o p l a y  f a m i l y member's p a r t i c u l a r  with  discussed  the specialists  their  at the c l i n i c ,  f e e l i n g s o f hope  f o rpositive thinking.  some i n d i v i d u a l s w a s some t y p e faith  -  Much o f t h e f e a r was d i s p e l l e d when t h e s u b -  many o f t h e s u b j e c t s belief  89  of faith;  Related whether  and t h e i r  to this for  a religious  i n t h e power o f t h e i n d i v i d u a l t o be w e l l , an i m p o r t a n t r o l e  One h u s b a n d  this  f o r some o f t h e s u b j e c t s .  said:  I b e l i e v e you have t o look p o s i t i v e l y a t t h i n g s . I f you t h i n k n e g a t i v e l y , then bad t h i n g s happen t o you. I f you have p o s i t i v e t h i n k i n g , then p o s i t i v e things happen. A wife  of a patient  had a s i m i l a r point  o f view:  I b e l i e v e that your a t t i t u d e can a f f e c t your health. I f you have a p o s i t i v e outlook, you have a b e t t e r chance to escape i l l n e s s . The f i r s t d a y o r t w o , I t h o u g h t a b o u t h i m d y i n g , b u t now I h a v e f a i t h . The  father  o f a twenty-one year o l d p a t i e n t  identified the  importance o f h i s f a i t h : I n e v e r p r a y e d as much o r more t h a n I h a v e i n t h e l a s t month....One h a s t o t u r n t o s o m e t h i n g , a t a t i m e l i k e t h i s and one's f a i t h comes up a n d h i t s one r i g h t i n the face. I ' v e m a d e a r e c o m m i t m e n t t o my f a i t h a n d my p r a y e r s h a v e b e e n p r e t t y c o n s t a n t and s o f a r i t seems t h a t they've been answered. This of  man's w i f e  stressed  positive thinking:  p o s i t i v e things....The presentation  "You t r y t o t h i n k  o f hope i s  important."  - 90 Another p a t i e n t ' s  husband  also  talked of positive thinking:  I t h i n k p o s i t i v e a l l t h e t i m e and I don't t h i n k anyone s h o u l d g i v e up. S h e ' d g e t down a l i t t l e and I ' d f o r c e h e r t o l o o k a t t h e p o s i t i v e aspects. Another husband  said:  One m u s t b e p o s i t i v e . I'm s u r e t h e r e i s a psychosomatic f a c t o r i n v o l v e d . . . . Thoughts about l o s s don't do any good; I ' d be a f r a i d t h a t I ' d created a negative environment f o rh e r t o recover A young w i f e  stressed  in.  her f e e l i n g o f optimism:  I was o p t i m i s t i c b e c a u s e he l o o k s h e a l t h y and he's happy and he h i m s e l f i s o p t i m i s t i c t o o . . . . I j u s t t h i n k t h a t h e ' l l be okay and e v e r y t h i n g ' s a l l right, and a f t e r h i s t r e a t m e n t s h i s c a n c e r w i l l maybe d i s appear completely and I hope t h a t h e ' l l g e t enough r e s t and be happy a g a i n and have enough t i m e t o do e v e r y t h i n g he wants. Ambivalence. most s i m u l t a n e o u s l y gator  felt  could  Hope and f e a r were o f t e n  and t h i s was a r e a c t i o n w h i c h t h e i n v e s t i -  appropriately  a m b i v a l e n c e was e x p r e s s e d ambivalence others of  be c a l l e d ambivalence.  i n s e v e r a l ways.  Some f e l t  about l e a r n i n g more about t h e p a t i e n t ' s  expressed  the patient,  about t h e whole  ambivalence toward t h e i r and o t h e r s  inability  expressed  This some  condition,  own r e a c t i o n s  a feeling of  o r those  uncertainty  situation.  One h u s b a n d his  experienced a l -  t o ask  identified questions:  h i s need  f o rinformation,  but  -  91  -  T h e r e w e r e t o o many t h i n g s , I d o n ' t , y o u can't jump r i g h t i n and ask r i g h t away a t h o u s a n d q u e s t i o n s ....He s a i d i t w a s v e r y b a d a n d t h a t w a s e n o u g h f o r me...I h a v e n ' t s p o k e n t o h i m s i n c e , and t h e s u r g e o n who p e r f o r m e d t h e o p e r a t i o n e v e n h e w o u l d n ' t c o m e o u t a n d s a y , h e j u s t , hum, w o u l d t r y t o g i v e y o u h o p e b u t he w o u l d n ' t commit h i m s e l f , he w o u l d n ' t s a y — I should s a y t h a t I d i d n ' t a s k l i k e w h a t s t a g e my w i f e w a s i n but I wouldn't; other than t h a t the doctors wouldn't t e l l me v e r y m u c h . . . I k n o w i t w a s b a d e n o u g h , b u t you c a n ' t ask a t a time l i k e t h a t . Another husband expressed  similar  feelings  when he  said:  The d a y o f t h e o p e r a t i o n , I was on d a y s h i f t and I k e p t p u t t i n g i t o f f t o 'phone t h e d o c t o r ; y o u d o n ' t know w h e t h e r you want t o know...I'd k e e p t h i n k i n g — s h o u l d I 'phone and f i n d o u t o r s h o u l d I n o t 'phone and t h e n I won't f i n d o u t . ( B e f o r e t h e o p e r a t i o n ) h e d i d n ' t t e l l me anything mind you, I d i d n ' t ask him 'cause I don't t h i n k you r e a l l y want t o know t o o much. One  husband  identified  the  i n s e c u r i t y he  felt  i n the  situation:  The c o n f u s i n g t h i n g i s t h a t w e ' r e t a l k i n g a b o u t a h i g h cure area but there's always the u n s e t t l e d f e e l i n g t h a t we r e a l l y d o n ' t k n o w w h e r e we stand.... It's p o s s i b l e t h a t I don't ask enough q u e s t i o n s but I o f t e n w o n d e r j u s t h o w f a r y o u s h o u l d g o a n d how you s h o u l d t r e a t s o m e o n e i n t h e m e d i c a l p r o f e s s i o n . Do you t r u s t t h e m t o t e l l y o u o r do t h e r i g h t t h i n g o r do y o u t r e a t them as s u s p e c t and a s k q u e s t i o n s . One  husband  entire  showed h i s a m b i v a l e n c e  situation  toward  the  disease  and  the  i n s e v e r a l ways:  I'm o p t i m i s t i c t h a t i t s w e l l c o n t a i n e d , b u t i t ' s b e e n a s e r i e s o f b a d n e w s . . . . I know I s h o u l d be v o l u n t e e r i n g and h e l p i n g and a s s i s t i n g b e c a u s e i t ' s b a d news e m o t i o n a l l y b u t t h e p r o b l e m i s you l e n d e m p h a s i s t o somet h i n g t h a t maybe s h o u l d be n e u t r a l i z e d and i t ' s t h i s b a l a n c e t h a t i s most d i f f i c u l t t o a c h i e v e . . . . I f I c o u l d  h e l p h e r i n any way, t h a t ' s f i n e , b u t I d o n ' t w a n t t o g i v e undue w e i g h t t o s o m e t h i n g she can h a n d l e by herself.... There i s a problem i n keeping a balance. There's a t e n d e n c y t o c a p i t u l a t e i n a l l t h o s e a r e a s one w o u l d n o r m a l l y h a n g toughC: i n — normal r o u t i n e arguments. I f e l t I h a d t o b e c a r e f u l t h a t my e m o t i o n a l o r empathy d i d n ' t overcome o r overshadow a l l t h e t h i n g s that are important t o maintain balance. One feels l i k e a r a t - f i n k b e c a u s e one i s d e t e r m i n e d n o t t o capitulate — i t ' s r o u g h n o t t o know — one i s t o r n f a r more t h a n n o r m a l l y w o u l d be b e c a u s e y o u l o v e someone and you w a n t h e r t o h a v e n i c e t h i n g s y e t as a m a t t e r o f p r i n c i p l e you must deny; when a s h o r t l i f e e x p e c t a n c y i s p l a c e d on someone i t makes i t d i f f i c u l t to balance. Another  husband  of  situation:  the  seemed t o w e i g h t  the  positive  and  negative  aspects  T h e i m m e d i a t e i m p a c t w a s t h a t i t w a s damn b a d luck. B u t , i t was f o u n d w h e n i t was s m a l l and t h e lymph nodes were n e g a t i v e so t h a t augers w e l l . . . . I was c o n c e r n e d w h e n r a d i a t i o n t r e a t m e n t was p r e s c r i b e d ...I'm a w a r e t h a t a l t h o u g h s t a t i s t i c s s a y y o u ' r e b e t t e r o f f h a v i n g had the treatment than not h a v i n g had i t , n e v e r t h e l e s s , t h e mere a c t o f i r r a d i a t i n g h e a l t h y t i s s u e s h a s i t s h a z a r d s as w e l l and I t h i n k i t ' s one treatment I'd r a t h e r avoid. I'm s u r e i f I w e r e i n t h a t p o s i t i o n , I would unquestionably opt f o r the treatment but i t l e a v e s a n a s t y t a s t e s i m p l y b e c a u s e o f w h a t one knows about e f f e c t s of r a d i a t i o n i n g e n e r a l . . . . I don't have any c h o i c e a b o u t t r e a t m e n t , I ' l l buy t h e t r e a t m e n t ' c a u s e i t ' s t h e b e s t t h i n g t o do i n t h e c i r c u m s t a n c e s . One  p a t i e n t ' s mother,  the  doctor,  indicated  and  was  t h a t she  a nurse,  who  had  r e a d i n g b o o k s on felt  ambivalent  asked  her  daughter's  about her  A l t h o u g h t I d o n ' t know w h e t h e r really — I m e a n , i t h a s n ' t d o n e me  many q u e s t i o n s  level  of  condition, of  knowledge:  I know a n y t h i n g any good t o know  - 93 anything. I f y o u d o n ' t k n o w y o u d o n ' t vroicicy, m a y b e — I sometimes t h i n k t h e l e s s y o u know t h e b e t t e r o f f y o u a r e . We're r e a l l y a n x i o u s t o know what t h e s e new b i o p s i e s show. Concern Several  of the subjects  i n which other patient's the  the  Often,  this  r e a c t i o n was q u i t e  and when no s h a r i n g  individuals  some c o n c e r n  family  members.  about t h e manner  c o n c e r n was  expressed  d i f f e r e n t from t h a t  when  of the  o f feelings had taken place  indi-  between  involved.  Two w i v e s One  mentioned  o f other  members o f t h e f a m i l y w e r e r e a c t i n g t o t h e  diagnosis.  other's  vidual  about t h e r e a c t i o n s  talked  about t h e i r  children's  reactions.  said: I n r e g a r d s t o t h e c h i l d r e n , t h e t h r e e young ones w e r e r e a l l y q u i t e o b l i v i o u s t o e v e r y t h i n g t h a t was g o i n g o n . T h e y w e r e s o r t o f i n t h e i r own l i t t l e world and i t was q u i t e f a s c i n a t i n g j u s t t o s e e how c h i l d r e n r e a c t and t h e y w e r e n ' t a t a l l u p s e t as s u c h . I find c h i l d r e n a l i t t l e c a l l o u s somehow, a l i t t l e h a r d . I was s o r t o f d i s t u r b e d t o s e e t h e i r r e a c t i o n ; w i t h t h e i r daddy r e a l l y , r e a l l y s i c k and t h e y knew he was r e a l l y sick. The o l d e s t one was r e a l l y u p s e t , b u t h e k e p t a l o t i n s i d e , h e w o u l d j u s t h o v e r a l l t h e t i m e i f I was o n t h e ' p h o n e o r a n y t h i n g a n d I w a s r e a l l y g l a d my b r o t h e r was h e r e t o b e a b l e t o t a l k t o h i m a n d c a l m him. B u t t h e o t h e r s , t h a t r e a l l y f a s c i n a t e d me, I t h i n k c h i l d r e n can r e a l l y bounce back from almost anything. T h e b o y ' s t h i r t e e n a n d h e ' s t h e o n e who f e l t i t and t h e g i r l ' s e l e v e n and a b o y n e a r l y e i g h t a n d a b o y nearly four — t h e youngest, okay, I d i d n ' t expect anyt h i n g o r t h e t w o y o u n g e s t , b u t I w o n d e r e d a b o u t my girl — t h a t was r e a l l y — during a l l this our l i t t l e dog g o t r u n o v e r and t h a t s h e r e a l l y r e a c t e d t o , s o I know she does h a v e f e e l i n g s .  The  other  94  -  stated:  My c h i l d r e n k n o w t h e i r f a t h e r h a s c a n c e r b u t they don't recognize the i m p l i c a t i o n s . My s o n m a y b e d o e s b u t my d a u g h t e r d o e s n ' t . E v e r y t h i n g she d o e s seems so s e l f i s h , s h e ' s o n l y n o r m a l b u t — her f i r s t r e a c t i o n was "what w o u l d h a p p e n t o h e r h o r s e ! " Another and  subject  spoke w i t h  surprise of the reactions  of his  son  daughter: Our son i s a l a r g e c o n c e r n ; he's a h i g h s c h o o l d r o p o u t a n d i s b u m m i n g a r o u n d a n d we h a v e n o w a y o f g e t t i n g i n t o u c h w i t h h i m ; we d o n ' t e v e n k n o w w h e r e he i s . . . t h e f a c t t h a t he has n o t b e e n s u f f i c i e n t l y i n t e r e s t e d i n h e r w e l l b e i n g t o e v e n 'phone h a s h u r t her b u t t h e r e ' s n o t h i n g I can do.... I don't s u b s c r i b e t o any p a r t i c u l a r f e a r o r a n x i e t y over cancer being catchy or anything l i k e that. You k n o w I'm n o t w o r r i e d b y c o n t a g i o n o r s o o n . But, c u r i o u s l y e n o u g h , o u r d a u g h t e r who i s c u r r e n t l y s t a y i n g w i t h us...she r a i s e d a question yesterday which rather s u r p r i s e d me, w h i c h s u g g e s t e d t h a t s h e h a d a l i t t l e sneaky f e e l i n g i n the back o f her mind t h a t i t might not b e a v e r y g o o d t h i n g t o u s e t h e same f a c e c l o t h o r something l i k e that. I t s u r p r i s e d me, I t h o u g h t s h e ' d h a v e k n o w n b e t t e r t h a n t h a t a n d i t may b e t h a t t h i s i s the reason our son hasn't approached — but the trouble i s , we d o n ' t k n o w b e c a u s e we c a n ' t g e t i n t o u c h w i t h h i m . So t h a t ' s t h e o n l y t h i n g t h a t came as a b i t o f a s h o c k ! 0  In of  one  family,  f o u r members w e r e i n t e r v i e w e d  t h e m made some c o m m e n t s a b o u t  t h e r e had been  a little  ter  and h e r o l d e s t  one  another about  y e a r o l d d a u g h t e r was toward t h e i r  communication  sister, their  mother:  the reactions between  of others.  or concerns.  most concerned w i t h  her  The  talked  each While  the youngest  none o f t h e o t h e r s had  feelings  and  daugh-  with  twenty-one  sisters'  behaviour  - 95 T h e o n l y t h i n g t h a t u p s e t s me i s t h a t my s i s t e r s don't do any work around t h e h o u s e . . . . I t ' s j u s t t o o b a d t h a t t h e y c a n ' t , e s p e c i a l l y V. who's s i x t e e n , c a n ' t t a k e t h i n g s i n t o h e r hands and s o r t o f — b u t t h a t ' s s o r t o f t h e age t h a t ' s b a d ! The  t w e l v e y e a r o l d a l s o was c o n c e r n e d  reaction: maybe year her  "At f i r s t  i t was  I was c r y i n g  j u s t t o s u p p o r t me,  o l d mentioned h e r younger stepfather's  about h e r o l d e r  a l o t a n d V. d i d n ' t I d o n ' t know."  sister  The  sister's look  upset;  sixteen  b u t was m o s t d i s t u r b e d  by  actions:  My l i t t l e s i s t e r was r e a l l y u p s e t , I n e v e r r e a l l y , t h e o l d e r - y o u n g e r s i s t e r r e l a t i o n s h i p n e v e r seems t o b e t o o good u n t i l l a t e r on s o I don't know what t o s a y . I t r i e d t o s a y t h a t t h e r e ' s no p o i n t i n t h i n k i n g a b o u t why i t ' s happened t o h e r b u t I don't t h i n k t h a t k i n d o f t h i n g i s , y o u k n o w , I'm n o t r e a l l y g e a r e d i n t o w h a t t o say t o a younger k i d . . . . I k n o w I w i s h t h a t R. c o u l d b e m o r e o f a h e l p t o her (themother). I d o n ' t t h i n k h e r e a l l y k n o w s how t o handle the s i t u a t i o n — 'cause I know s o m e t i m e s when s h e f e e l s b a d , he c o u l d be a l o t more s u p p o r t i v e t o w a r d h e r . As a h u s b a n d h e s h o u l d b e c a r r y i n g o u t t h e m a i n r o l e o f s u p p o r t i n g h e r when s h e ' s l i k e t h a t and i f I c o u l d do i t I'd be happy t o , b u t I t h i n k she needs h i m t o f a l l on and I d o n ' t t h i n k h e k n o w s how t o h a n d l e t h e p o s i t i o n as w e l l as h e s h o u l d b e a b l e t o . . . . E s p e c i a l l y o n e n i g h t when t h e r e w a s a r e a l l y b a d a r g u m e n t . . . h e j u s t g o t mad a n d t h a t w o u l d b e b e c a u s e h e d o e s n ' t know how t o h a n d l e t h e situation. T h a t r e a l l y b u g s me, i t ' s n o t r i g h t t h a t Mom s h o u l d h a v e t h a t t o t u r n t o , s h e s h o u l d b e a b l e t o h a v e s o m e t h i n g b e t t e r t h a n t h a t ; some o n e who r e a l l y k n o w s how t o , w h a t t o do when s h e f e e l s l i k e t h a t . I t must be r e a l l y h a r d o n h e r w h e n s h e f e e l s l i k e t h a t a n d R. d o e s n ' t know how t o h a n d l e i t . She n e e d s someone t o f a l l b a c k o n ....I j u s t t h i n k i fhe c o u l d s e e , I t h i n k he c o u l d h a n d l e i t i f he would t h i n k about i t . I j u s t don't t h i n k he has r e a l l y , maybe h e ' s j u s t n o t r e a l l y m a t u r e e n o u g h i n t h a t f i e l d tokknow what's r i g h t .  - 96 The  p a t i e n t ' s husband v o i c e d  h i s perception  of the girls'  reactions: The c h i l d r e n ' a r e i n t e r e s t e d o n l y i n t h e m s e l v e s and t h a t ' s b a d news, a n d t h e i r m o t h e r d o e s n ' t seem t o be a b l e . t o g e t t h e i r a t t e n t i o n i n t o p e r s p e c t i v e ....The k i d s a r e i n d i f f e r e n t a n d t h a t ' s a p r o b l e m , t h e i r mother has d i f f i c u l t y accepting t h e i r r e a c t i o n .  Summary All of  of the subjects  the manifestations  them e x p e r i e n c e d  alities  among In  grief, or  of anticipatory grief  at least  own w a y o f e x p r e s s i n g  b u t one e x p e r i e n c e d  three.  their  feeling members.  one  and t h i r t e e n o f  A l l of the subjects  feelings,  but there  had  w e r e some  their common-  them. addition t o the manifestations  t h e r e were s e v e r a l other  reactions.  at least  These i n c l u d e d  o f concern  of anticipatory  commonly e x p e r i e n c e d  f e a r , hope,  feelings  ambivalence  about t h e r e a c t i o n s o f t h e other  and a  family  Chapter  5  DISCUSSION  This to  study  a diagnosis  which  focused  o f cancer  are indicative  and s p e c i f i c a l l y  the subjects  scribed  their  spoke  f o r themselves;  chapter  i s t o i n t e g r a t e these  f e e l i n g s and r e a c t i o n s .  work and p r e v i o u s  research  Robbins  their  reactions  reactions  In the  previous  own w o r d s d e -  The p u r p o s e o f  findings with  this  the conceptual  frame-  findings.  (1974) s t a t e d t h a t  cancer  on those  of anticipatory grief.  chapter  i t a b l e when  g e n e r a l l y on t h e f a m i l y ' s  i s diagnosed.  anticipatory grief  Armstrong  (1975:15)  i s inev-  said:  R e g a r d l e s s o f t h e more o p t i m i s t i c prognosis o f p a t i e n t s w i t h c a n c e r , d e a t h as a p r o b a b l e outcome of t h e d i s e a s e and a n t i c i p a t o r y g r i e f a r e present from t h e time o f d i a g n o s i s . The  findings of this  statements. the  Only  (1944).  mentioned three However, t h r e e three  only  reactions.  d i d not f u l l y  seven o f t h e twenty  manifestations  Lindemann  study  o f these  were e x p r e s s i n g only  findings cast  a l l of  o u t l i n e d by  s i xothers  who  anticipatory grief.  two o f these  one, and one s u b j e c t  these  described  as f i r s t  a l s o be assumed t h a t  experienced  Such  subjects  of anticipatory grief I t may  substantiate  manifestations,  d i d not acknowledge any o f doubt on t h e i n e v i t a b i l i t y  - 97 -  these  of  - 98 anticipatory  g r i e f being  Nevertheless, this  -  p r e c i p i t a t e d by a diagnosis  t h e assumption that  of cancer.  f a m i l y members may  experience  g r i e f reaction early i n the course of the disease  i s sup-  ported. All diagnosis all  of the subjects  within the three  of the patients  begun treatment ationn  at the clinic.  should  ences:  most i m p o r t a n t l y ,  negative  be considered  condition,  their  diagnostic  t e s t s and  There was, however,  descriptions  factors  of their relative's  months p r i o r t o t h e i n t e r v i e w and  had completed  i n the subjects'  patient's  had learned  of their  i n order  a wide  reactions.  t o interpret these  the individual's perception  and t h e s u b j e c t ' s  difficulty  variTwo  differ-  of the  i n  expressing  thoughts. An  individual's perception  of h i s relative's condition  seems t o h a v e t h e g r e a t e s t  e f f e c t on h i s response t o t h e d i a g -  nosis.  who e x p e r i e n c e d  tions  The s e v e n s u b j e c t s  manifesta-  o f a n t i c i p a t o r y g r i e f a l l had reason t o believe  patient's adults  life  i n this  patient's  was s e v e r e l y  limited.  the patient's  grieved  by h i s i l l n e s s .  The  five  would n o t be e a s i l y c o n t r o l l e d and t h e two  h a d overhear.d t h e i r  was p r o b a b l y v e r y ceived  threatened  that the  g r o u p h a d e a c h b e e n i t g L v e n some e v i d e n c e t h a t , t h e  disease  adolescents  thus  a l l four  mother  say that her l i f e  span  These seven i n d i v i d u a l s , then,  condition  as a d e f i n i t e t h r e a t  forthe anticipated loss.  to life  perand  The ifestations perception indicated five  of  one  the  they  being  of the  disease in  of  Each of  these  subjects  were  aware o f  a threat to the in this  ent  perception  The  specialist  highly  to maintain  have  life,  not  to  was  on  or h i s assured  the  shared  they  a strong  fact  the  differed  modes.  loss of  men  two had  one  that his wife's  adequate treatment  uncontrollable  (the  i t was  "no  the  first  group  and  not  had  patient.  of the  manifes-  his  differknowl-  conditions.  condition  was  that while  high.  not  hope  the  acknowledge the  doctor  Thus,  of  a slightly  to  the  these  the p o s i t i v e  ability  that  or  modes.  from the  described  did exist,  a l l but  faith,  perception  on  the  Each of  c o n d i t i o n , d e p e n d e n t on  man  of  and  They a l l m a i n t a i n e d  a n t i c i p a t e the  Each of these  disease  However,  hope.  t h o u g h t s was  s u b j e c t s who  reoccurrence  relied  disease  to  controllable with  chance o f man  and  the  possibility  group described  of his wife's  cancer  of  knowledge of p o s s i b l e treatment  were husbands.  edge© o f  about the  advances i n treatment  three  seriousness  patient's life.  emphasis of t h e i r  were determined  tations  the  thoughts  i n d i v i d u a l s may  The  man-  patient's condition.  a threat  that the  aspect and  as  of the their  subjects  these  three  about  stressed their  while  only  thoughts  a need t o t h i n k p o s i t i v e l y five  described  some c o n f l i c t i n g  them expressed  disease  -  s i x s u b j e c t s who  expressed of  99  told  the  The  second  him  that  news i s g o o d news"  the  attitude)  - 100 ) and  stressed  high  that  probability  t o h i s knowledge, h e r type o f cancer had a o f cure.  edgedc  that  h i swife's  belief  that  her l i f e  The t h i r d man,in t h i s  c o n d i t i o n was s e r i o u s  denied  the seriousness  (1955)  found  similar  the  disease  subjects, tectomy  of  had  this  condition.  these  described  expressed  was n o t l i f e  subjects  Orbach  The o t h e r  leukemia.  some  heightened  a common b e l i e f  threatening.  that  One o f t h e s e  who h a d h a d a p a r t i a l  morbidity  c o n d i t i o n was e a s i l y  mas-  supported h i s b e l i e f  and m o r t a l i t y  two expressed  a belief  statistics that the  c o n t r o l l e d by treatment.  was a d a u g h t e r who d i d n o t l i v e  One  with the  H e r b e l i e f was b a s e d o n h e r a w a r e n e s s o f b r e a s t  general  rather  than her mother's  was t h e t w e n t y - f o u r y e a r  a nasopharyngeal  ment. her  the patient,  h i s knowledge o f recent  subject  and t h e p r o g n o s i s .  and h a d no lymph node i n v o l v e m e n t ,  patient. in  who o n l y  t h e husband o f a p a t i e n t  patient's of  a few parents i n h i s study  of the illness  subjects,  with  patient's  disease.  use o f denial o f the implications o f the  preoccupation  with  b u t emphasized t h e  i n two o f twenty mothers o f c h i l d r e n w i t h Three  acknowl-  span would not be shortened by t h e  F r i e d m a n e t a l (1963) f o u n d t h a t  disease  group,  actual  o l dwife  tumour removed  condition.  third  o f a p a t i e n t who h a d  and was h a v i n g  She had n o t t a l k e d t o any o f t h e d o c t o r s  husband had t o l d  The  cancer  h e r i t was n o t a s e r i o u s  Cobalt  and s t a t e d  treatthat  type o f cancer,  that be  i t had  cured  that  condition None o f  -  a l l been removed d u r i n g  after treatment.  stressed  101  their  itself  Thus, each of  preoccupation  and  the  them e x p r e s s e d  surgery  was  and  thoughts  would  these i n d i v i d u a l s  due  only  patient's present  any  t h a t he  to the  state of  about the  disease  health.  disease  being  life-threatening. One o u t l i n e d by  subject  Lindemann.  m a s t e c t o m y and feeling  d i d not  that  had  this  no  This  describe subject's  s i t u a t i o n d i d not  y e a r s p r e v i o u s l y when h i s w i f e  and  had  her  life  was  minor i n comparison.  by  been unconscious  a past  i n great  relative's  (1975:6) p o i n t e d often  feel  causes  threat  of  these groups o f  considered,  recognize  and out  had  discuss that  had  had  weeks. threat  his  manifestations  had He  compare w i t h  a  partial  expressed an  incident  a cerebral  At  that  aneurysm  time,  posed by  the  he  this  was  felt  disease  influenced  loss. subjects  perceived  d i f f e r e n t ways.  however, i s the  symptoms o f  patient  their  Another  respondent's grief.  in anticipatory grief,  ambivalent toward the  a serious  wife  the  Thus, h i s p e r c e p t i o n  condition i n slightly  w h i c h must be ness to  f o r two  danger; the  more s e r i o u s Each of  of  lymph node i n v o l v e m e n t .  two  was  any  and  this  factor  willingAldrich  family  members  ambivalence  impact:  The t a r g e t s t i l l a l i v e but  of the ambivalent f e e l i n g s i s not only also p a r t i c u l a r l y vulnerable, balanced  -  102  -  b e t w e e n l i f e and d e a t h . T h i s v u l n e r a b i l i t y makes a death w i s h appear p a r t i c u l a r l y potent and dangerous. T h i s f a c t o r may c o n t r i b u t e t o t h e c l i n i c a l impression t h a t a n t i c i p a t o r y g r i e f appears be more r e a d i l y d e n i e d t h a n c o n v e n t i o n a l g r i e f . This  fear of the  several tive  vulnerability  subjects.  One  environment  need t o m a i n t a i n  may  have i n h i b i t e d  action  they  had  mentioned  for his wife  the  of the  hope  and  there  was  patterns.  The  most  heightened  preoccupation  Depression  followed  p o s i t i v e thoughts.  the  with  closely,  being  eventual  and  nine  had  emphasized  grief  re-  experienced  These  of  s o m e common was  subjects mentioning i t .  some t h o u g h t s  it.  were  manifestation  a n t i c i p a t e d the  n e c e s s i t a t e d by  i n more  by  sixteen  about the  modes o f  subjects.  patient's  readjustment  findings deserve to  be  detail.  Preoccupation The  most commonly e x p e r i e n c e d  seci-bied.by s e v e n t e e n not  nega-  combinations  subjects, there  seventeen  twenty described  did  by  These f e e l i n g s  f r o m d e s c r i b i n g any  frequently described  ThirteencOjf the  Heightened  i n ; others  wide v a r i a t i o n , i n the  e x h i b i t e d by  discussed  at  f e a r about c r e a t i n g a  to recover  some s u b j e c t s  manifestations  t h a t w o u l d be  hinted  experienced.  While  death  a  p a t i e n t was  to  identify  any  subjects other  m a n i f e s t a t i o n was  i n c l u d i n g the  manifestations.  three  de-  individuals  Friedman et  al  who  (1963)  - 103 found  that preoccupation w i t h thoughts  common i n t h e p a r e n t s Hoffman and S a b s h i n child's  illness,  c h i l d which  this  pating  parents  exhibited  was o f t e n m a n i f e s t e d  o f another  that this  by  adult,  during the  some p r e o c c u p a t i o n w i t h t h e or by  f a m i l y members.  preoccupation  preoccupation with  the individual  Futterman  e t a l (1972)  i s an e x p r e s s i o n o f t h e need person  and i s an  Freud  (1916)  a deceased  prepared  antici-  i ti s nevertheless present i n  subjects.  o f t h e detachment process.  which  Futterman,  i n c l i n g i n g behaviour  to h o l d on t o t h e soon-to-be l o s t  heightened  were  may n o t b e q u i t e s o o v e r t i n a d u l t s  a large majority o f these  aspect  children.  a t t h e expense o f other  behaviour  the loss  indicated  i l l  child  ( 1 9 7 2 ) s t a t e d t h a t a t some t i m e  i n d u l g i n g h i s needs While  of fatally  of the i l l  important  first  described  l o v e d one as a  process  h i m s e l f t o g i v e up t h e l o s t  object. There i s , o f course, Beland  (1970) i n d i c a t e d  regresses  tion. with  t o o much  by  who c a r e  the patient;  those  f o rhim.  individuals  center of their  i t s e l f may p r e c i p i t a t e  account  he o f t e n  T h e f a m i l y may r e a c t b y  i ti s not necessarily  This would  i s i l l ,  o f f u n c t i o n i n g and becomes more  f o r h i m and m a k i n g himt-the  Thus, i l l n e s s  process.  possible explanation.  t h a t when an i n d i v i d u a l  t o a l e s s mature l e v e l  dependent on those doing  another  a  atten-  preoccupation  a part of the grieving  f o rthe expression of preoccupation  who d e n i e d  any t h r e a t t o t h e p a t i e n t ' s  life.  -  104  -  Depression Sixteen  of  the  subjects  depression  following learning of  depression  manifested  feeling  sadness,  of  lessness parents  and of  itself  the  some f e e l i n g s  of  patient's diagnosis.  i n s e v e r a l ways i n c l u d i n g a  crying, difficulty  hypersensitivity.  leukemic  described  sleeping or  Futterman  c h i l d r e n experienced  general  eating,  (1972:255) a similar  This  rest-  found  period  that of  depression: . . . S h o c k a n d n u m b n e s s w e r e common a s i m m e d i a t e r e a c t i o n s . . . . N u m b n e s s q u i c k l y g a v e way t o p a i n , s a d n e s s and c r y i n g . Hyperactivity, psychosomatic manifestat i o n s and i n s o m n i a w e r e a l s o m o s t o f t e n p r e s e n t i n t h e f i r s t month o r two f o l l o w i n g d i a g n o s i s . Orbach ipating  (1963) n o t e d the  death of  One  This  of  i l l  man  et  al  described this for  child.  children.  without  any  their  of  r e a c t i o n has  (1972) and  experienced  signs  manifestation  reproach. fatally  similar  guilt  ienced  by  t h a n one  the  two  because of past  feelings.  a d u l t does  behaviour  i n parents  is guilt  or  Friedman et  al  O n l y two The  subjects  most p r o b a b l e  feel  more t o t a l l y  f o r another.  in this  s a m p l e was  toward the  The  parents  (1963),  Futter-  guilt  in this  was  sample  explanation  of  responsible guilt  exper-  aroused not  p a t i e n t but  antic-  self-  frequently i n the  (1963) a l l i n d i c a t e d t h a t  exception.  subjects  depression  fact,  difference i s that parents a child  depression  been seen  In  Orbach  of  also,  only  particu-  larly by  i n one  the  wife, because o f  sample never  at  depression  least  one  of  the  Thirteen thoughts  about the  only  of  two  these  about the  way  with  that  form of  this  as  other  of  with  the  suffering  was  subjects  deserted  the  and  of  the  thoughts  sample  to verbalize their  thoughts  their  ability  Fulton  (1972) The  and of  subjects' reluctance i n statements t r y t o put  g r i e v i n g process  described eleven more  limited  l o n g he  had  time to  live.  disease  was  about p a i n  or  disease. to think  such  those  cope  patient's death i n a  mentioned worry the  to  other  "what m i g h t h a p p e n " i f t h e  treatment  mentioned However,  a b o u t how  The  the  mentioned  grief.  p a t i e n t ' s death.  a reoccurrence  phase of  this  manifestations.  They f r e q u e n t l y mentioned the  patient or  "You  in  p a t i e n t ' s death.  die or  Fulton  possibility  evident  subjects  of  in this  of the  and  about i t "or This  the  death.  c o n t r o l l e d by  bility  at being  symptoms a l s o  manifestations  p a t i e n t might  fashion.  the  from other  t h i r t e e n were able  the  about the  by  depressive  possibility  They a l s o t a l k e d about not  anger  Death  a rehearsal of  abstract  experienced  described  R e v i e w i n g Forms o f  left  feelings of  existed i n isolation  s u b j e c t who  talked  -  patient. The  Every  105  as  things  about t h i s  " I t r y not out  to  of your  i s obviously very  possithink mind".  painful  - 106 and  unpleasant  not  bring  and i ti s probable t h a t  could  f o rthis  of the patient.  be viewed  Anticipation  with  h i s discussion  Thoughts  Aldrich  of the vulner-  about t h e p a t i e n t ' s  as a form o f death  could  death  wish.  o f Modes o f R e a d j u s t m e n t  Nine justment that  subjects  described  some t h o u g h t s  would be n e c e s s i t a t e d  O n l y one s u b j e c t effort  just  themselves t o acknowledge these thoughts.  (1974) a c c o u n t e d ability  some s u b j e c t s  indicated that  at planning  the  thoughts were u n i n t e n t i o n a l  ing  t o note that  this  by t h e p a t i e n t ' s  these  f o rthe future.  thoughts were  The o t h e r s  read-  death. a  conscious  indicated  and d i s t u r b i n g .  manifestation  about t h e  that  I t i sinterest-  was t h e one d e s c r i b e d  most  infrequently.  Thoughts o f readjustment might be t o o p a i n f u l t o  consider  the patient  ment.  while  Also,  there  sample and t h a t was s t i l l sample, to  i s one i m p o r t a n t  o f Lindemann  present,  alive  (1944).  and f a i r l y  the s o l d i e r had already  adjust  t o h i s absence.  anticipating  Other  i s s t i l l  alive  and undergoing  d i f f e r e n c e between In this active.  departed,  treat-  this  group t h e p a t i e n t I n Lindemann's  forcing the  subjects  Thus h i s s a m p l e was i n r e a l i t y n o t  readjustment but a c t u a l l y accomplishing  i t .  Manifestations There were three  other  reactions  which were  experienced  f r e q u e n t l y by  the  subjects  107  -  in this  sample:  f e a r , hope  and  ambivalence. F e a r was f e a r was  associated with  implications that  the  specific or  mentioned by  of  the  the  disease  diagnosis.  fear decreased  as  felt  specialists  after  at the  the  A  Day  the and  these  knowledge of significant  subject  clinic.  itself  Most of  their  condition increased.  f e a r was  over h a l f of  had  had  sample. the  unknown  i n d i v i d u a l s noted the  patient's  decrease  in  some c o n t a c t  (1966:83-84)  This  anxiety with  the  stated:  Overwhelming a n x i e t y i s p r a c t i c a l l y a constant concomitant of the d i a g n o s i s cancer, even though t h i s may b e a r n o r e l a t i o n t o t h e f a c t s i n t h e i n d i v i d u a l case....The panic response t o the word "cancer" i s f e l t s u b c o r t i c a l l y e v e n b y p h y s i c i a n s and s u r g e o n s acquainted w i t h the f a c t s of c u r a b i l i t y . . . . T h e antidote i s c a l m f o r t h r i g h t r e v i e w o f t h e f a c t s by a knowl e d g e a b l e and u n d e r s t a n d i n g d o c t o r , r e i n f o r c e d by t h e passage of time. This of  statement would  the  subjects  was  greatest  in  many c a s e s  diagnosis jects  in this  immediately i t was talking  experienced  described their  and  seem t o be  above.  the  sample.  during to the  this  period  clinic's  experiences  manifestations  of  an  fear  diagnosis,  and  (between l e a r n i n g  specialist)  These m a n i f e s t a t i o n s  condition.  the  Most i n d i c a t e d t h a t the  upon l e a r n i n g o f the  f e a r s were d i s s i p a t e d by  patient's  s u b s t a n t i a t e d by  that the  of sub-  anticipatory grief often decreased  increase  i n knowledge  after about  the  - 108 Several  subjects  need t o t h i n k p o s i t i v e l y  expressed  a feeling  o f hope o r a  about t h e s i t u a t i o n .  Aldrich  pointed  o u t t h a t hope i s commonly  grief.  F r i e d m a n e t a l (1963:620) f o u n d t h a t hope was  by  t h e parents  o f leukemic  (1975)  associated with anticipatory emphasized  children:  The e l e m e n t o f hope...was u n i v e r s a l l y e m p h a s i z e d by t h e p a r e n t s . . . . U n l i k e m a s s i v e d e n i a l , hope d i d n o t a p p e a r t o i n t e r f e r e w i t h e f f e c t i v e b e h a v i o u r a n d was e n t i r e l y compatible w i t h an i n t e l l e c t u a l acceptance of r e a l i t y . T h a t t h e p e r s i s t e n c e o f hope f o r a more f a v o u r a b l e outcome does n o t r e q u i r e t h e need t o i n t e l l e c t u a l l y deny t h e c h i l d ' s prognosis i s o f c l i n i c a l s i g n i f i c a n c e , as i t d i f f e r e n t i a t e s hope from defence p a t t e r n s t h a t p o t e n t i a l l y may d i s t o r t r e a l i t y . These  authors  parents' seemed  by  found t h a t  hopes f o r t h e c h i l d  as t h e d i s e a s e became  inversely related to their  grief. ning  also  The p e r i o d  o f treatment,  the subjects  i nthis  similar  toward t h e disease:  taneously. positive  fear  t o that being  described  often returned that while  experienced  a feeling  they  o f ambiva-  and hope were e x p e r i e n c e d  Some s p o k e o f t h e d e s i r e t o m a i n t a i n  same t i m e t h e f e a r , e x p e r i e n c e d  indicated  t e r m hope was a t t h e b e g i n -  a t t i t u d e toward t h e disease,  diagnosis,  term and  sample.  Some o f t h e s u b j e c t s lence  short  the  expressioncoTf a n t i c i p a t o r y  o f t h e most l o n g a stage  much more  progressed,  to their  hope o r a  b u t admitted  when t h e y  first  thoughts.  simul-  that  atthe  learned  ofthe  Some i n d i v i d u a l s  m i g h t have w a n t e d more  information  about the p a t i e n t ' s cause  they  et  (1963),  al  presence late  condition,  feared the and  o f hope  them as  Futterman and  While  et  al  the presence  manner i n w h i c h nosis  these  iso-  fear,  the reactions of t h e i r their  distress  periences reacts  children  at t h e i r  a crisis  among t h e  inevitable.  The  ication relation for  network  and  in a  ability  subjects i n  or  some c o n c e r n  and  about  different  way  the  to the  concern  three daughters  diag-  about  expressed  Everyone and  each  I f there i s l i t t l e  ex-  thus  (1960) p o i n t e d o u t be  communica-  misunderstandings  are  thattthe  much more r e s t r i c t i v e  anxiety laden  most obvious  t o cope w i t h the  this  F a m i l y Members  concerned,  Caplan  pleasant or g r a t i f y i n g The  described  simultaneously.  reaction.  f a m i l y may  to unpleasant  to  reactions of others are, nevertheless,  individuals  Parad  one  step-father's reaction.  c o m p a r e d w i t h o n e ' s own tion  No  discussed their  in a slightly  differently.  they tended  f a m i l y members w e r e r e a c t i n g  Three parents  Friedman  of  Y e t , many o f t h e feelings  (1951),  be-  the  subjects expressed  other  of cancer.  Abrams  questions  (1972) a l l commented on  Concern About the R e a c t i o n s o f Other Several  ask  s e q u e n t i a l phenomena.  coexistent.  sample d i d express  -  they d i d not  answers.  separate  t h e m as b e i n g  109  situations  than  communin  i t i s  situations. disruption  i n the  family  members'  r e a c t i o n s o f t h e o t h e r members was  in  a  family  i n which the  were d i s t r e s s e d w i t h their  reactions.  patient their  T h e r e was  f a m i l y members.  110  Pritchard  -  was  the  mother.  step-father's little (1974)  The  daughters  reaction  communication  and  he  among  with the  stated:  It i s t h i s w r i t e r ' s contention that the death o f a p a r e n t , p a r t i c u l a r l y o f a m o t h e r , c a n be the most c a t a s t r o p h i c e x p e r i e n c e i n the l i f e o f a f a m i l y where there are young or a d o l e s c e n t c h i l d r e n . A husband f a c i n g the p o s s i b l e death of h i s w i f e i s p r e o c c u p i e d w i t h h i s own s e n s e o f i m p e n d i n g l o s s and o f t e n f i n d s he has l i t t l e e m o t i o n a l r e s e r v e f o r h i s children. This  seemed p a r t i c u l a r l y  d i s t r e s s was relate  to  intensified  their  illness  one  to  investigate  be  another  of  many a s p e c t s  their  these  fruitful  girls  of  a  had  Perhaps not  the  learned  family's  aspects but  This i t has  research  s t u d y was  interaction  not  shown t h a t  i n the  to  way.  each i n d i v i d u a l ' s r e a c t i o n  members.  area to  family.  i n a meaningful  which might influence of  for this  because the  step-father  There are patterns  true  future.  to  designed  this  would  the  Chapter  SUMMARY AND  In of  CONCLUSIONS  1944 E r i c h Lindemann o b s e r v e d t h a t  s e r v i c e men w h o h a d l e f t  tations  6  as those  been bereaved.  t h e same  members manifes-  e x p e r i e n c e d b y i n d i v i d u a l s who h a d r e c e n t l y He s t a t e d  enced t h e four  f o rwar e x h i b i t e d  family  distinct  that  these wives  phases o f g r i e f :  and mothers depression,  experiheightened  preoccupation with  the departed,  which might b e f a l l  h i m a n d a n t i c i p a t i o n o f t h e modes o f r e a d -  justment this  t h a t would be n e c e s s i t a t e d  reaction  felt,  "anticipatory grief"  i n r e s p o n s e t o an e x p e c t e d Since that  been discussed their  time,  W h i l e many  tory g r i e f i s experienced i n a loved  action. cancer  This  He  termed  as t h e i r r e a c t i o n was, he  loss  rather  than  an a c t u a l frequently  experienced by cancer patients a u t h o r s have assumed t h a t  following  one, few have  anticipa-  of a diagnosis  attempted t o describe  or  of  this reof  a c t u a l l y p r e c i p i t a t e s an a n t i c i p a t o r y g r i e f r e a c t i o n ,  as  was t h u s  s t u d y was d e s i g n e d  learning  loss.  t o determine i f a diagnosis  described  care  by h i s death.  a n t i c i p a t o r y g r i e f has  as a r e a c t i o n  families.  cancer  a r e v i e w o f t h e forms o f death  by Lindemann, an i m p o r t a n t  i n patients'  f a m i l y members and i f i t  concept t o consider  f o rthese i n d i v i d u a l s .  - I l l  -  i n planning  nursing  - 112 The selected  from  study  was e x p l o r a t o r y  i n nature.  o f twenty  f o rthe diagnosis  the  f a m i l y members o f f o u r t e e n  i n t h e sample were spouses,  after  a semi-structured  the  investigator interviewed  the  i n t e r v i e w on tape.  place  initial  surgery.  c h i l d r e n and p a r e n t s  guide with  open-ended  M l b u t two o f these  of  and  i n t h e s u b j e c t ' s home, w i t h t h e t w o e x c e p t i o n s  subject's  place  of business.  and covered  knowledge o f t h e c o n d i t i o n o f h i s r e l a t i v e  time,  individual's future  effect  tween s u b j e c t  the effect activities  and p a t i e n t  was i m p o r t a n t A coding  indicative  at  i n length  and h i s past concerns  of the patient's diagnosis  of the diagnosis,  being  learning of the diagnosis,  h i s most important  of daily  took  the following topics:  his  present  recorded  The i n t e r v i e w s r a n g e d  individual's reaction to first  o r knowledge o f cancer,  questions,  interviews  the  felt  cancer,  patients, a l l  each o f t h e subjects  from twenty t o e i g h t y minutes  tact  of  patients. Using  the  sample,  and treatment  o f whom h a d b e e n r e f e r r e d t o t h e c l i n i c •Included  The  among f a m i l i e s w h o s e m e m b e r h a d b e e n r e f e r r e d t o  a large urban center consisted  -  living, effect  con-  at the  on t h e  h i s thoughts on t h e  on t h e r e l a t i o n s h i p b e -  and any o t h e r  topic that  the subject  t o mention. tool  which i d e n t i f i e d  specific  o f a n t i c i p a t o r y g r i e f was d e v e l o p e d .  behaviours The  interviews  - 113 were then  analyzed  using  s p e c i f i c behaviours  was  the  reliability  of this  did  three  occupation  with  tool.  Two test  seven  t h e p a t i e n t was  described  subjects.  and n i n e  s i x mentioned  Heightened  most o f t e n ,  Sixteen  t h i r t e e n mentioned  possible death  described  m e n t i o n e d one, and one  any o f t h e m a n i f e s t a t i o n s .  of depression;  patient's  interviewed,  of anticipatory grief,  mentioned by seventeen ings  on t h i s  of  a random sample o f t h e t a p e s t o  mentioned two, t h r e e  not describe  the presence  and r e c o r d e d  subjects  four manifestations  three,  analysis:  method.  Of t h e t w e n t y all  content noted  independent r a t e r s coded  -  described  some t h o u g h t s  t a l k e d about  subject pre-  being  some  feel-  about t h e  anticipation  of  modes o f r e a d j u s t m e n t t h a t w o u l d b e n e c e s s i t a t e d b y t h e p a t i e n t ' s death. Four other several  subjects:  of treatment; ment  fear of the diagnosis  a feeling  and a need  experienced  itself  by  and t h e e f f e c t s  o f h o p e i n new m e t h o d s o f m e d i c a l  for positive thinking; a feeling  toward the s i t u a t i o n ; family  r e a c t i o n s were commonly  of  treat-  ambivalence  and a c o n c e r n about t h e r e a c t i o n s o f  other  members. This  study  members o f c a n c e r  provides  insight  patients experience  t h o u g h t h e s a m p l e was  small  a n d may  into  t h e ways  that  anticipatory grief.  family A l -  n o t be r e p r e s e n t a t i v e o f t h e  - 114 entire  population  possible  -  o f f a m i l y members o f c a n c e r p a t i e n t s ,  t o d r a w some c o n c l u s i o n s  from these  subjects.  enced various  based on t h e data  The f a c t t h a t  these  combinations o f the four  his in  theory  can be used  as a framework  i n d i v i d u a l s who h a d r e c e n t l y  diagnosis  o f cancer.  f o r assessing  learned  from t h e i n d i v i d u a l s i n t h i s  a s t i l l  wider  antici-  this  of a family  Lindemann's o r i g i n a l  of  t h e assumption  that  reaction  member's  sample c o n s i s t e d  of  f o rwar, a group f a r  sample.  Perhaps,  L i n d e m a n n ' s d e s c r i p t i o n o f a n t i c i p a t o r y g r i e f may b e to  experi-  manifestations  f a m i l y m e m b e r s o f s e r v i c e men w h o h a d l e f t different  collected  individuals  p a t o r y g r i e f o u t l i n e d by Lindemann supports  i t i s  range o f s i t u a t i o n s where t h r e a t  then,  applicable  of loss i s  present. The of  fact that  these manifestations  tion  frequently  cancer  i s often  However, t h a t may i n d i c a t e perception  to  initial diminish  o f anticipatory g r i e f supports i n the literature  perceived  this  as e q u i v a l e n t  that  of the patient's  condition  seemed t o p l a y  reaction  i n this  t h e assump-  subjects  The i n d i v i d u a l ' s  as h i s p a s t  knowl-  a s i g n i f i c a n t role i n determining  and a n t i c i p a t o r y g r i e f symptoms o f t e n  as t h e s u b j e c t  of  sentence.  among t h e s e  attitude. as w e l l  a l l four  a diagnosis  t o a death  r e a c t i o n was n o t u n i v e r s a l  a changing trend  edgee o f c a n c e r his  stated  some f a m i l y m e m b e r s e x p e r i e n c e d  learned  more about t h e d i s e a s e  began and  - 115 p o s s i b l e modes positive nosis will  o f cancer w i l l be l e s s l i k e l y  dual  lose  Each  differently finding  from  a l l other  disease  These d i s c r e p a n c i e s  cancer were o f t e n  willingness  of patients  and t h e s u b j e c t s '  their  concerns with  this  t o h i s own p e r c e p t i o n and r e a c t i o n s  and d i s c u s s e d  discussionoof  among  t o have t h e i r eagerness  a health  type o f contact.  one t o t a l k  condition quite  i s an  important  of that  actual  condition.  can cause  family  early i n the course of  reactions  diagnosis  f a m i l y members.  family  involved  The  i n this discuss  p r o f e s s i o n a l emphasizes t h e need  This  t o about t h e i r  to the  ( i n some c a s e s ) t o  n e e d was m o s t o b v i o u s  c a s e o f c h i l d r e n , t w o o f whom s t r e s s e d no  i l l -  an i n d i v i d u a l ' s r e a c t i o n t o h i s  not encouraged  study  for  This  indivi-  of the  the patient's  f a m i l y members.  death.  illness.  In t h e past, of  from one  so does t h e p e r c e p t i o n  i n perception  i fnot identified  patient's  imminent  i s not always r e l a t e d t o t h e p a t i e n t ' s  c o n d i t i o n b u t more l i k e l y  conflict  the diag-  d i f f e r e n t manner and c o n s e q u e n t l y r e a c t  as i t i n d i c a t e s t h a t  relative's  with  o f knowledge v a r i e s  f a m i l y member may p e r c e i v e  a slightly  about t h e  q u a l i t y and i n d i v i d u a l s  t o equate the diagnosis  as t h e l e v e l  learn  i t may b e t h a t  i t s fearsome  i n a family t o another,  ness.  the  As more p e o p l e  r e s u l t s o f cancer treatment,  Just  in  of treatment.  the fact that  f e e l i n g s and f e a r s .  i nthe they had had  Being  open  - 116 about t h e i r  feelings with  an o u t s i d e r  w a r d more f r e e d o m o f d i s c u s s i o n It especially difficult and  has been suggested  those  associated  and t h a t  ings.  Most o f t h e subjects feelings  her  cluding of these others  to learn  sample were q u i t e  with  an i m p o r t a n t  study has several  patients  In  caring  are frequently  physical  contact  families  implications  f o rnursing  and research.  While  from t h e data  care.  This  and f a m i l i e s t o t h e study  asked t o give study suggests  emotional that  cancer,  and provides  i n some  analysis, and t h e itself.  families,  support  as w e l l  i n d i v i d u a l s may about t h e  insight into the various  with  o f t h er e -  finding.  and t h e i r  their  was n o n -  and t h e i r  ence a n t i c i p a t o r y g r i e f soon a f t e r l e a r n i n g of  open about  factor i n this  f o r cancer patients  feel-  suggestion.  a r e r e l a t e d t o t h e methods o f d a t a c o l l e c t i o n o f the patients  deeply  about t h e s e  However, t h e a b i l i t y  implications result directly  reactions  nurses  o f l o s s , i s most  would have t o probe  some f o r p r a c t i c e , e d u c a t i o n 1  feelings,  had n o t had any p e r s o n a l  t o develop rapport  This  loss or threat  even though t h e i n t e r v i e w e r  and t h e s u b j e c t s  must be c o n s i d e r e d  t a l k i n g about  s t u d y do n o t s u p p o r t t h i s  prior to the interview.  searcher  that  with  i n this  and concerns  directive  ;  the subject  The r e s u l t s o f t h i s  step t o -  among t h e f a m i l y m e m b e r s .  an i n t e r v i e w e r  s p e n d much t i m e w i t h  may b e a f i r s t  as  experi-  diagnosis  ways i n w h i c h  individuals reaction. better  experience The  n u r s e who  assess  individuals  the  and, of  can  The as  expression  be  of  the  anticipatory grief  pared  to determine  individual  be  useful i n providing a  a need  their  the  need  and  their  talk.  type  arises.  of  to  The  are  Nurses  not  opportunity  and  learn that may  contact  how  condi-  person  manifestations  n u r s e must be  their  or  pre-  i f the  and  the  modes can  families to  the  investigator implies  are  available to  willing  they  help  assessment.  to  listen  must p r o v i d e and  their  beginibo f e e l  their  patients to  concerns,  reactions guilty  patients when  encouragement  encouraged to discuss  never  or unnatural  and  indicate  Lindemann*s t h e o r y  for this  able  to  patient's  about cancer  patient.  More i m p o r t a n t l y , the  intervene  i s accurate  concerns with  must be  the  identify  members.  service.  families with  f a m i l y m e m b e r s may  feelings.  one  can  necessary.  family's primary  framework  f e e l i n g s and  and  and  w i l l i n g n e s s o f p a t i e n t s and  f a m i l i e s and  I f they  peculiar  disease  perception  a v a i l a b l e for the  for this  and  the  first  i f this  treatment  their  anticipatory grief  a n t i c i p a t o r y g r i e f may  r e q u i r e s more i n f o r m a t i o n  The  anticipatory grief  f e e l i n g s where  i n these  of  discuss  recognize  nurse i s o f t e n the  s u c h , may  this  f a m i l y members' r e a c t i o n s  f a m i l y member p e r c e i v e s  tion.  -  describe  cope w i t h these  The the  and  117  are  about  not their  - 118 Some f a m i l i e s feelings help  communication working  Peer  seeing  persons  prepare the nurse  this  and  facilitating  may  be  a more  family.  done  by  effective  As n u r s i n g themselves  are instrumental  i n helping  communication.  f a m i l y h e l p s one their  can be  fam-  Often  t o see h i s  own  understanding of their  awareness  effective  of  resource  working with  such groups  help to the  f a m i l i e s who  have  must  identified  to resolve i t . to  t o a s s e s s an  grief  Thus, t h i s  nursing education.  of  loss  threat  can  e d u c a t i o n must t a k e t h e r e s p o n s i b i l i t y  of  and  Nurses  role.  to help patients  reaction.  by  their  Nurses  are unable  Nursing  reaction  the entire  grief manifestations,  but  members,  t h e d i s e a s e p r o c e s s , and  individual  problem  crisis  Although t h i s  Nurses, w i t h  f o r these groups.  also offer  this  for inter-family  i n another  and  discuss  led to conflict.  o r two  support groups  more c l e a r l y .  anticipatory  one  not  c e n t e r e d , n u r s e s must p r e p a r e  the need  f a m i l y dynamics  the  cope w i t h  facilitator  a problem  problem  this  counselling  family  accept t h i s  t o see  and  study could  b e t w e e n members.  involves  becomes more  ilies  family  extensively with  approach  to  i n this  among t h e m s e l v e s  the e n t i r e  -  individual's and  their  study has  A l l programs  of loss  i n their  anticipatory  families  implications  t o cope  with  for a l l levels  should include the core c u r r i c u l a .  The  concept diploma  program, which  119  concentrates  on  the  p a t i e n t , must  discussion of  anticipatory grief  opportunities  to talk with  baccalaureate  program must emphasize  the  effect  Finally,  of the  trate  not  o n l y on  duals  and  their  standing  of  In implications  threat  of  but  group dynamics their  on  and  the  should  i n working  concept  study  of  and  a l s o be  education,  While  this  i t provides  anticipatory  indicated  i s present;  grief,  framework c o u l d p r o v i d e  applicable i n other  perhaps r e l a t i v e s  investigations valuable data  family reactions to other s t u d y was  subject  study  acute  areas  conducted  about the  of where  similar  theory  concept  as  a  itself  chronic conditions.  during  A longitudinal  a  of patients diag-  using this  and  has  further  t h a t Lindemann's t h e o r y  Future  of the  groups  i t i s only  manifestations.  diagnosis.  under-  t o work w i t h  disease conditions also experience  following  indivi-  families.  g r i e f may  This  and  concen-  with  a greater  nosed w i t h other  and  The  f a m i l y system.  students  ability  for nursing research.  loss  entire  skill  the  with  family relationships  developing  addition to practice  This  anticipatory  on  increasing their  knowledge about the beginning.  loss  students  experiencing loss.  degree program,  families  o f p a t i e n t s and  provide  individuals  threat of  i n a master's  and  i n c l u d e some  study  a limited following  time the  period progress  from h i s immediate r e a c t i o n t o the knowledge  of  - 120 his  relative's diagnosis  and  follow-up would provide  tory the  grief reaction. syndrome c o u l d  does  anticipatory  entire  over  greater  g r i e f develop  the reaction?  the disease?  anticipatory  Are there  grief?  experience be  ability  What e v e n t s  itself  appear  How  over t h e  i n the disease subside  process after  again l a t e r i n the course who n e v e r  experience differ  a few o f the, q u e s t i o n s w h i c h  from might  study.  grief  i n this during  t o cope w i t h  early  sample d i d , this  t o determine i fthere  these two groups and i f t h i s ual's  and m a n i f e s t  some i n d i v i d u a l s  some s u b j e c t s  anticipatory  interesting  about t h e development o f  I f s o , how do t h e s e i n d i v i d u a l s  answered b y f u r t h e r While  the anticipa-  I f the manifestations  t h o s e who d o ? . T h e s e a r e o n l y be  into  o n l y be answered b y t h i s type o f study:  treatment has begun, do they of  course o f treatment  insight  Many q u e s t i o n s  course o f the disease?  precipitate  the entire  early  others  stage.  d i dn o t I t would  are d i s t i n c t differences reaction  affects  i n  the individ-  the progression of disease  i n h i s  relative. The specialized further who  fact  that  s t u d y was c o n d u c t e d  urban treatment unit  research.  A comparative  are not referred  different  this  results;  also  several  highly  has implications  study with  to the clinic  at a  families  for  of  patients  might produce s t r i k i n g l y  subjects mentioned that  fact  that  their and  h o p e was  was  revived  offered  knowledge of it  also  families  and  be  aimed  at  able  to  develop  helpful  to  patients  conduct  interventions  t h e i r feelings of  t e s t i n g and  evaluating  a greater and  the  have added t o  clinic  about the  body  these  clinical  help  In  questions,  studies  which w i l l  to  these  anticipatory grief. nurses  situation.  By  will  of behaviours which  their families in this  of  patients,  concept.  interventions,  repertoire  the  cancer  a n s w e r i n g more o f  must b e g i n t o  cope w i t h  identifying,  t h e n , may  many more q u e s t i o n s  test nursing  to  attended  treatment.  study,  research  nurse researchers develop  patient  anticipatory g r i e f i n families of  stimulated  addition to  when t h e  further  While t h i s  121  are  -  122  -  BIBLIOGRAPHY  A b d e l l a h , F a y e G. a n d E u g e n e L e v i n e . 1 9 6 5 . through nursing research. New Y o r k : Company.  Better patient care MacMillan Publishing  Abrams, R u t h . 1966. "The p a t i e n t w i t h c a n c e r — h i s changing pattern of communication." New E n g l a n d J o u r n a l o f Medicine. 274:317-322. A g u i l e r a , D o n n a C. 1 9 6 8 . C l i n i c a l Sessions.  " C r i s e s , d e a t h and d y i n g " . In ANA New Y o r k : Appleton-Century-Crofts.  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New Y o r k : Columbia U n i v e r s i t y Press.  fatal illness Schoenberg  - 131 -  APPENDIX Consent  CANCER  A  Form  CONTROL AGENCY OF B R I T I S H  Consent t o p a r t i c i p a t e i n Research Warren  , agree  study being conducted study deals with  by  Barbara  by Barbara Warren.  t h a t my p a r t i c i p a t i o n w i l l  tape  recorded.  that  the tape  understand thesis  Signed: Witnessed:  that  involve  with  that  t o have t h i s  I will  remain  tape w i l l  when a  cancer.  interview  anonymous and  be a v a i l a b l e o n l y  a n d t h e members o f h e r t h e s i s c o m m i t t e e . this  this  one i n t e r v i e w o f  agreed  of the interview w i l l  has been  time.  and I have  I understand  that  I understand  I understand  o r f r i e n d has been diagnosed  a p p r o x i m a t e l y one hour  investigator  to participate i n the research  an i n d i v i d u a l ' s f e e l i n g s and r e a c t i o n s  f a m i l y member  I understand  Date:  conducted  R.N.  I,  close  Study  COLUMBIA.  to the I  also  be e r a s e d when t h e i n v e s t i g a t o r ' s  accepted.  that  I am  free  t o withdraw  from t h e study a t any  - 132  APPENDIX  Explanatory  -  B  Letter to  Family  As p a r t o f t h e d a t a c o l l e c t i o n f o r my M a s t e r T h e s i s i n N u r s i n g , ^ I am c o n d u c t i n g i n t e r v i e w s w i t h f a m i l y m e m b e r s o f p a t i e n t s b e i n g t r e a t e d at the B r i t i s h Columbia Cancer I n s t i t u t e . These i n t e r v i e w s a r e i n f o r m a l and a r e d e s i g n e d t o a l l o w f a m i l y members t o d i s c u s s t h e f e e l i n g s and r e a c t i o n s t h e y h a v e e x p e r i enced upon l e a r n i n g o f the p a t i e n t ' s d i a g n o s i s . As a n u r s e , I h a v e b e e n c o n c e r n e d a b o u t h e l p i n g f a m i l i e s t o cope w i t h t h e s t r e s s o f t h i s i l l n e s s and I hope t h a t by l e a r n i n g more about t h e r e a c t i o n s e x p e r i e n c e d at t h i s time n u r s e s w i l l be b e t t e r a b l e t o p r o v i d e t h e a s s i s t a n c e t h a t f a m i l i e s may require. I hope t h a t you w i l l c o n s i d e r p a r t i c i p a t i n g i n t h i s study. I w i l l c o n t a c t you by phone w i t h i n t h e n e x t week t o a n s w e r a n y f u r t h e r q u e s t i o n s y o u may h a v e i n r e g a r d t o t h e s t u d y and t o d i s c u s s t h e p o s s i b i l i t y o f y o u r p a r t i c i p a t i o n . I look forward to t a l k i n g with you. Thank  you. Yours s i n c e r e l y ,  Barb Warren, U.B.C. S c h o o l BW:g  R.N., of Nursing.  - 133 -  APPENDIX C Interview  Could you begin by t e l l i n g about If  's  necessary:  me  about when y o u f i r s t  illness?  clarify  what  feelings  a r e now.  experience o r knowledge o f cancer.  What a r e y o u r m o s t i m p o r t a n t c o n c e r n s to  learned  (a) c l a r i f y what t h e s u b j e c t h a s s b e e n t o l d a n d b y whom. (b) c l a r i f y w h a t f e e l i n g s o r r e a c t i o n s w e r e experienced at t h i s time. (c)  Past  Guide*  the patient,  Have y o u t h o u g h t  yourself,  at this  time i n r e l a t i o n  o t h e r f a m i l y members?  about what e f f e c t  your patient's  diagnosis  may h a v e o n y o u r f u t u r e ? (a) c a n y o u t e l l me a b o u t y o u r t h o u g h t s o n this? (b) h a v e y o u d i s c u s s e d t h e s e t h o u g h t s w i t h anyone? I s s o , who? I f not, i s there any r e a s o n ? (c) h o w d o y o u f e e l a b o u t h a v i n g t h e s e thoughts? What e f f e c t h a s y o u r p a t i e n t ' s life,  particularly  Perhaps  ask subject  eating,  d i a g n o s i s had on your  sleeping,  to describe  social  a typical  everyday  activities,  work?  d a y now v e r s u s p r e -  diagnosis. Has  your  relationship with  your p a t i e n t been  affected  way b y h i s d i a g n o s i s ?  I f so, can you describe  Is  you f e e l  The The  there anything else  i n any  the effect?  i s important t o mention?  e x a c t w o r d i n g and o r d e r o f q u e s t i o n s was n o t s t a n d a r d i z e d . patient's relative t i t l e ( e g : f a t h e r , h u s b a n d ) was u s e d .  - 134  -  APPENDIX Coding  Interview  D  Tool  #  Date:  Date o f p a t i e n t ' s  diagnosis:  Patient's  diagnosis  (from  chart):  Subject's  understanding of  Subject's  relationship to patient:  diagnosis:  Length of r e l a t i o n s h i p : Lives  with or  Previous  Other  subject: distance:  experience with  f a m i l y members —  Nonverbal behaviour  Comments:  cancer:  p a r t i c i p a t i o n i n study.  during  interview:  - 135  Interview  -  #:  Depression  Verbal  Statements  Insomnia Anorexia Weiqht  Loss  Inability  to  concentrate  Restlessness Hvpersenitivitv Sadness Weepinq  (crvinq)  Self-reproach Suicidal  thouqhts  Nonverbal Sicrhinq Crvinq  Comments:  Cues  Present  - 136 -  Heightened  Verbal  Preoccupation with  Patient  Statements  Present  Ignores r e s p o n s i b i l i t i e s  (other  Cancels planned vacation  away f r o m p a t i e n t  Continually Patient  thinks  than patient)  about p a t i e n t  i s main t o p i c o f most c o n v e r s a t i o n s  Discontinues social more t i m e w i t h D i s l i k e s o r attempts being alone  activities patient t o prevent  t o spend  patient  C o n s t a n t l y s e e k s new i n f o r m a t i o n about patient's diagnosis (eg. readsoor seeks books and magazines r e l a t e d to cancer). Has d e v e l o p e d p r o t e c t i v e patient.  Comments:  attitude  toward  - 137 -  Anticipation  Verbal  o f Modes o f  Readjustment  Statements  Expresses concern parent  about  Present caring  f o r remaining  Thinks about changes i n l i f e s t y l e t h a t be n e c e s s i t a t e d b y p a t i e n t ' s d e a t h Expresses  thoughts  about  remarriage  Attempts t o l e a r n about jobs o r r e s p o n s i b i l i t i e s normally c a r r i e d out by p a t i e n t (or c o n s i d e r s t h e need) Takes over r e s p o n s i b i l i t i e s by p a t i e n t  usually  held  T h i n k s about p o s s i b l e changes i n f a m i l y relationships following loss of patient Expresses concern the patient  Comments:  about  life  without  may  - 138 -  Reviewing  Forms o f Death t h a t M i g h t  Verbal  Befall  Patient  Statements  Present  Seeks i n f o r m a t i o n  about  Seeks i n f o r m a t i o n  r e : how p a t i e n t may  Questions  length  Expresses  concern  o f time about  w h e n p a t i e n t may  left  with  patient's  die  die  patient final  hospitalization Belief  that  Comments:  "cancer" i s equivalent  t o "death"  .  

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