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Utilization of palliative care services in Vancouver : 1990-1993 Cardiff, K. (Karen), 1953-; Hsu, David Hsing-Sheng, 1953-; Kuhl, David Nov 30, 1998

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UTILIZATI ON OF I'ALLIATIVE CARE SERVICESIN VANCOUVE R: 1990-1993Karen CardiffIlavid IIsliDav id KuhlIII'RU 98:13D November, 1998Utilization of Palliative Care Services in Vancouver: 1990-1993Karen CardifflDavid Hsu2David Kuhl31 Centre for Health Services and Policy Research , The University of British Columbia2 Palliative Care Unit, Vancouver Hospital and Health Sciences Centre, Vancouver,British Columbia3 Palliative Care Unit, St. Paul's Hospital, Vancouver, British ColumbiaThis research was supported by a grant from the BC Ministry of Health, administered through theVancouver Palliative Care Coordinating Group.The Centre for Health Services and Policy Research was established by the Board ofGovernors of the University of British Columbia in December 1990. It was officiallyopened in July 1991. The Centre's primary objective is to co-ordinate, facilitate, andundertake multidisciplinary research in the areas of health policy , health services research ,population health , and health human resources. It brings together researchers in a varietyof disciplines who are committed to a multidisciplinary approach to research, and topromoting wide dissemination and discussion of research results, in these areas. TheCentre aims to contribute to the improvement of population health by being responsive tothe research needs of those responsible for health policy. To this end, it provides aresearch resource for graduate students; develops and facilitates access to health andhealth care databases; sponsors seminars, workshops, conferences and policyconsultations; and distributes Discussion Papers, Research Reports and publicationreprints resulting from the research programs of Centre faculty.The Centre 's Health Policy Research Unit Discussion Paper series provides a vehicle forthe circulation of (pre-publication) work of Centre faculty , staff and associates. It isintended to promote discussion and to elicit comments and suggestions that might beincorporated within revised versions of these papers. The analyses and interpretations, andany errors in the papers, are those of the listed authors . The Centre does not review oredit the papers before they are released.A complete list of available Health Policy Research Unit Discussion Papers and Reprints,along with an address to which requests for copies should be sent, appears at the back ofeach paper.Utilization of Palliative Care Services inVancouver: 1990-1993Table of ContentsPageBackground 1Methods 3Study Design 3Sampling Strategy 3Analysis 3Results and Discussion 4Death Rates and Causes of Death .4Utilization of Palliative Care Services: Cancer and HfV 6Location of Death: All Causes of Death 12Location of Death: Cancer and Hl V 14• Cancer Deaths 14• mv Deaths 18Other Causes of Death 21Conclusions and Recommendations 22References 24Appendix A 25Appendix B 27Appendix C 29Appendix D 30BackgroundPalliativecare is the care of terminallyill patientsand their families. It includesphysical, psycho-social, andspiritualdimensions. Palliativecare is not simplypassivecare; it may involveactiveinterventions. However, thefocus is not on cure, but rather on comfortand qualityof life. The CanadianPalliativeCare Association (CPCA)document 'PalliativeCare: Towards a Consensus in StandardizedPrinciplesof Practice' (1990)reviews anumber of definitions of palliativecare, includingthat of the WorldHealth Organization:'The activetotalcare of patients whosediseaseis not responsiveto curativetreatment. Controlofpain, of other symptoms and of psychological, social and spiritualproblems is paramount. The goalof palliativecare is achievement of the best qualityof life for patientsand their families.'ThroughoutCanada, there is a growingrecognition of the need for regional approaches to palliativecareservices. The forces promotingregionalization have been twofold. First, serviceprovidersin many Canadiancentresrecognized the need for information sharing and coordination of services. Second, and more recently,provincial governments across Canada haveendorsed a decentralized, regional approachto health care serviceplanning and delivery. This reorganization of health care is encouraging palliativecarelhospice providers toform regionalgroups.In British Columbiaat least tworegionalgroupshave beenmeetingfor several years: the Vancouver PalliativeCare CoordinatingGroup (VPCCG), and the CapitalRegionDistrictPalliativeCare Advisory Committee.Membershipofthe VPCCGrepresents the acuteand continuingcare sectors, and includesVancouver Hospital,St. Paul'sHospital,Mt. St. Joseph's Hospital, St. Vincent's Hospital,B.c. Cancer Agency(BCCA),MayGutteridgeCommunityHome, VancouverlRichmondHealth BoardHomeHospiceProgram, HolyFamily andFriendsfor Life. Recently, representation from palliativeJ hospiceservices in Richmondhas been added. The'Closer to Home' initiatives, which followed from the SeatonCommission Report (1994),have led to theincreasingrecognition of the importance of palliative care services, and the need to develop an integratedplanfor services in Vancouver.Althoughit couldbe argued that all dyingpatientsrequire formalized palliativeservices, it may be tooencompassing to suggestthat the population at need is simplythe entire annual mortalityin Vancouver. Therecertainlyshould be elementsof palliative care in the care of any dying patient, but to a degree, such care can beconsidered as part of the goodgeneralmedical/healthcare of any patient. For example,in suddendeaths fromtrauma, there are elementsof grief and bereavementthat need to be addressed. Or, in situationsof chronicillnesssuch as chronicobstructive pulmonarydisease, renal failure, or Alzheimer's disease, there oftenareelementsof symptom control.The more usuallyacceptedworkingapplications ofpalliativeservices centreon a terminal illness, with prognosisgenerallyup to weeks/months, rather than years. Historically, palliativecare has been associated with care ofpatients with terminal cancer. This report has focused on cancer and AIDS as diseases which in later stagesmayrequire more formalizedpalliativeservices. Clearly, there are other instanceswhereterminal care mayrequirepalliativecare (e.g. endstageheart disease, endstagerenal disease, degenerative neurological disease), and issuessurroundingservices to these patients need to be addressedin any planning of palliativecare services.The VPCCGreceived funding from the B.C. MinistryofHealth, to undertake a number of projects related to thedeliveryof palliativecare services. One of the projects is presentedin this report, which analyzes utilization ofpalliativecare services in Vancouver during the period 1990-93.This report beginswith a briefoverview of the methodsinvolved in the study. This is followed by a descriptionof all adult deaths in Vancouver 1990-93, looking at factors such as age/sex distribution and causesof death.Much of the remainderof the report focuses on deaths fromcancer or AIDS, and data arc presentedon contactsof these patientswith the then existingpalliativecare system. Simplifying assumptions and caveatsmustbe keptin mind. Palliativecare is provided by a numberof different serviceproviders. In this particular study, it wasnot possibleto collectdata on the full range of encounters that take placebetween a terminally ill patient and thehealth care system (e.g. family physicians who provideelements of palliativecare in their general practice). Oneof the major issuesaround death and dyingrelates to placeof death, i.e. home vs hospital. This report presentsdata on place of death for the 1990-93 period. There is some discussion as to the assumptionsregardingpalliativecare as primarilyapplicable to cancerlHIVpatients. Finally,drawingupon the resultsof the dataanalysis, the reportofferssomerecommendations.A brief description of palliativeservices in Vancouver during the 1990-93 studyperiodcan be found inAppendixA.2MethodsStudy DesignThe major objective of this study was to examine the utilization of publicly funded palliative care servicesin the Vancouver region by adult! residents of Vancouver, in the one year prior to their death. Inparticular the intent of this study was to:• determine the proportion of terminally ill patients who were accessing palliative care services prior todeath• document the trends in location of death (i.e., home vs institution') for terminally ill patients• determine if a relationship between access to palliative care services and location of death existsTo address these questions administrative data were analyzed retrospectively'.Sampling StrategyThe study population was based on data routinely collected by the B.C. Ministry of Health and includedall adult Vancouver residents who died during the period of 1990 through 1993. The study populationalso included all adult non-Vancouver residents who died in Vancouver during the same time frame(N=18,480).AnalysisThe analysis involved several steps . First, the study population data were linked to community andhospital based administrative data. Then death rates and causes of death for the entire study populationwere examined. Because the major focus of this study was on terminally ill patients, a sample wasselected from the study population which included all deaths related to cancer and AIDS . This sampleformed the basis for much of the remainder of our analysis. Using bivariate analysis and a logisticregression procedure, utilization of publicly funded palliative care services and location of death wasexamined for these individuals.! In this study 'adult' was defined as being over 16 years of age.2 In this study , acute care , extended care and long-term care facilities were categorized as 'institutions'.3 This included adrninistrati ve data routinely collected by the BC Ministry of Health, theVancouverlRichmond Health Board, the BC Cancer Agency, and a number of hospice units located inVancouver.3Results and DiscussionDeath Rates and Causes of DeathThe total number of adult deaths (from all causes) in Vancouver from 1990 through 1993 was18,480. Figure 1 shows that the number of deaths per year in Vancouver increased slightl y from 4,474deaths in 1990 to 4,873 deaths in 1993.Figure 1 V an c ouv er-Related D e aths 1990-1 9 9 3 -- All Causes (N = 1 8 ,4 8 0 )5,0004 ,5004 .0 0 0,9 3,500.. 3 ,0 0 0"Q-Q 2, 500~~ 2,000i1,5 0 01,0 00500C N o n . V a n c u u ve r R e sld e n IsCJ V 8 11 couver R esid en ts,-- 9 12S4l.915" o.MYI" '0n o. ~3.75 2 3 ,96 13,58 3 3 ,620 .. ..so'\. .... ..~1990 ( n .. 4 ,474 ) 199 1 ( n _ 4, 4 46)Ye ars19 91 ( 0 .. 4, 6 67 ) 19 9 J (n= 4 , 81 3)Figure 2 shows that there was a concomitant increase in deaths per thousand population during this sameperiod of time, In 1990 and 1991 deaths per thousand population remained stable at 8.5 deaths per 1,000,In 1992 death s per thousand increased to 8.7 and in 1993 there were 9 deaths per thousand population.Figure 2 also describes deaths per thousand population for the rest of Briti sh Columbia and Canada. Thedeaths per thous and population described for Canada include 'all ages'; therefore, the rates are slightlylower than those described for either Vancouver or British Columbia.Figure 2 Deaths Per Thousand Population 1990-1993 -- All CausesraVan couv er Re stden ts (ge l ' yrs)_ B C ( ge 16 y rs)Cl Cllnada (_II - l eo . )IS8.7 H,M1990 1991Years41992 1993Although the number of deaths in Vancouver increased slightly from year to year , the major cause ofdeath, by broad category, remained consistent as to relative proportions over the study period . These areshown in Figure 3.Figure 3 Vancouver-Related Deaths 1990-1993 (N=18,480)Major Cause of Death By Year10091>9091>8091>70%60%% 5091>40%3091>20%10%0%1990 (n=4,474) 1991 (n=4 ,466) 1992 (n=4,667) 1993 (n=4,873)Years• "other" refers to all other causes or death Including those related to the dige sti ve syst em , accidents and In.luryWith respect to deaths related to cancer, the major causes are lung cancer, colon cancer, breast cancer andprostate cancer. Details on the incidence of cancer deaths for each of this sites (described by age group)can be found in Appendix B. The incidence of Hlv-related deaths (described by age group) can be foundin Appendix C.Figure 4 shows that the annual number of deaths in Vancouver from HIV, while less than lung cancer, ismore than that for colon cancer, breast cancer or prostate cancer. However, more recently, with theadvent of new therapies for patients with AIDS the rate of HfV-related deaths has been decreasing.Ell Ca Pros late (n=254)lIICa Breast (n=347)mCa Colon (n=4 94 )DCa Trachea/Lun g/Bronchus (n=I ,229)C1HIV (n =654)Figure 4 Vancouver-Related Cancer! and IIIV Deaths 1990-1993(N=2,978) ...--_-=- ---,.--,..- ...,10090807060% 50403020101990 1991Years1992 1993I th ll aOl lyl!lill excluded casu o r ce ry iCII I cancer and n U ll when the lilt ur (.I nu r was unspecified5Utilization of Palliative Care Services: Cancer and HIVThe history of palliative care in Canada and elsewhere has been closely associated with the treatment ofterminal cancer patients. More recently , with the AIDS epidemic and emphasis on terminal care forAIDS patients, palliative care has also been seen as an integral part of AIDS care . Figure 3 showed thatabout 30% of deaths in Vancouver during the period 1990-1993 were due to cancer/AIDS. In terms ofactual number of deaths, this means that about 1400 deaths per year are from cancer/AIDS in Vancouver(approximately 88% of these are due to cancer). In contrast to cancer/AIDS deaths , deaths from othercauses, such as heart disease or chronic lung disease, are not generally thought of as being regularly in thedomain of palliative care . For the purposes of this report , most of the focus has therefore been oncancer/AIDS deaths in Vancouver. However, as discussed in a later section of this report, the validity ofsuch an assumption may need to be reevaluated.This study was designed on the basis that contact with anyone of the following organizations would beconsidered 'formal contact' with the palliative care system, as it existed in Vancouver during the periodfrom 1990 through 1993: the VancouverlRichmond Health Board (VIRHB) Community Home HospiceProgram, May's Place, Normandy House, St. Paul' s Hospital Palliative Care Unit, Vancouver Hospit aland Health Sciences Palliative Care Unit (or in-hospital consultation by the respective hospitals' palliativecare services), or admission to the British Columbia Cancer Agency (BCCA) 5th Floor Unit. Palliativecare provided by family physicians and other health care personnel, and by various other agencies orgroups (e.g. private home care agencies and the volunteer sector) was not included in our definition of'formal contact' because access to data about these sorts of encounters was not readily available .As Figure 5 shows, 'formal contact' with the palliative care system for patients with cancer has increasedfrom about 50% in 1990 to 72% in 1993. This analysis included both Vancouver and non-Vancouverresidents. When we examined the pattern for Vancouver residents alone, we found that 60% had 'formalcontact' in 1990, 67% had 'formal contact' in 1991, and 75% and 77% had 'formal contact' in 1992 and1993 respectively.O COIlI.cl.No Contac t72606910090SO7060% 50403020 ·10Figure 5 Proportion of Study Population 1 With Cancer as a Cause of Death :Description of "Formal Contact" with Vancouver-Based Publicly FundedPalliative Care Services 1990-1993(N= 4, G8G)1990 (0= 1,233) 1991 (0= 1,144) 1992 (0=1,167) 1993 (0=1,142)Yea rsJ this ana lysi s included both Van couver and non-Vanc ouver residents6There are a some factors which may have influenced the observed change in contact over time. Variouseducational endeavors have targeted physician groups with the goal of increasing awareness about theimportant role palliative care can play in terminal illness. Efforts have also been directed towardsimproving physicians' awareness of how to access palliative care services for their patients.One of the major limitations of this study is that we did not capture important information about theamount of contact, the quality of contact, or the timing of the contact relative to the individual's date ofdeath.Examination of specific cancer sites shows that the pattern of contact with the palliative care system variesaccording to the site of cancer; however, all cancer sites show a similar pattern of increasing 'contact'over time (see Figure 6). The observed variation in contact, depending on the site of cancer, could beattributed to a number of factors including: the level of symptom control required by the type of cancer;the degree of psycho-social support needed; gender; and age differences. Different practice patternsamongst oncology specialists might also influence the pattern of patient referrals to the palliative caresystem.Figure 6 Proportion of Study Population' with Cancer as a Causeof Death: Description of "Formal Contact" with Vancouver-Based90807060% 5040302010Publicly Funded Palliative Care Services 1990-1993 lo coblaCIDescrihed by Site of Cancer (N=2,280).No Contactf-f- f- l-i-- l- f- I- f- I- f- l-f- l- I- I- I- l- I- f- I- - l-I- l- I- I- - I- I- l-I-- I- r- I- -I - I-- l- I- l- II- I-- l- t .. I-I t-90 91 92 93Cancer/Trachea/Lun G("=1,204)90 91 92 93Breast(" =340)90 91 92 93Colon(" =484)90 91 92 93Prostate("=252)I th is analysis Includ ed both Vancouver and non-Vanco u ver residents7Figure 7 shows a similar pattern for the mv group, with contact increasing from 58% in 1990, to 77% in1993. Virtually all of this group resided in Vancouver at the time of their death.O Colllncl.No Contact10090Figure 7 Proportion of Study Population' With HIV as a Cause of Death:Description 01' "Formal Contact" with Vancouver-Based Publicly FundedPalliative Care Services 1990-1993(N=650)807079677760% SO40302010S81990 (n=142) 1991 (n =126)Years1992 (n =I73) 1993 (n= 209)J lhls analysis Includ ed both Vancouver and non-Vancouver resid ent sWith respect to the specific components of the 'formal' palliative care system (as defined above), 63% ofall cancer patients who died (and who were residents of Vancouver) had contact with the VIRHBCommunity Home Hospice Program, ranging from 59% in 1990 to 67% in 1993. Seventy-one percent ofall AIDS patients who died had contact with the VIRHB Community Home Hospice Program, rangingfrom 69% in 1990, to 72% in 1993. Approximately 20% of the cancer/AIDS group were admitted to oneof the hospital palliative care units. About 10% of the cancer/AIDS deaths were referred to a palliativecare consultation team during an inpatient stay in acute care. Approximately eight percent were seen atBCCA (5th floor unit) . There is obviously some overlap with these, as patients may have had contact withmore than one component of the palliative care system. And in fact, the patterns of overlap are of someimportance. For example, approximately 30% of the cancer/AIDS patients who had contact with one ofthe palliative care units were not known to the VIRHB Community Home Hospice Program.Approximately 40% of palliative care consultation referrals (that were cancer or AIDS related) andapproximately 50% of the cancer patients seen at BCCA were not known to the VIRHB Community HomeHospice Program. If palliative care is to be a continuum of care, the degree of referral (or non-referral) tothe Community Home Hospice Program has implications as to the effectiveness of the 'system'.It is also of interest that, at both Vancouver Hospital and S1. Paul's Hospital, about 50% of the patientsseen by the palliative care consult team were admitted to one of the palliative care units within therespective hospitals. This most likely occurred as a transfer to the palliative care unit from an acute carebed within the same facility. About 25% of the patients admitted to BCCA (5th floor unit) were alsoadmitted, at some point during their illness , to a palliative care unit (i.e. within Vancouver Hospital or St.Paul's Hospital).A logistic regression procedure was applied to the data to determine if there were any variables whichpredicted a person 's contact with the 'formal' palliative care system. In this particular instance we havedefined 'contact with the formal system' as those individuals who had contact with the VIRHB Home8Hospice Program (individuals in this group mayor may not have had some contact with the othercomponents of the publicly funded palliative care system, as described above). A separate analysis wasundertaken for cancer and mv deaths.With respect to cancer deaths Table 1 shows that individuals living in the 'City Centre' were more likelyto have contact with the VIRHB Home Hospice Program compared to individuals living on the 'WestSide' (odds ratioe l.S). There was no socioeconomic gradient noted for the other areas of the city (p>.05)(i.e. individuals living in the 'Downtown East Side', 'North East', 'Midtown' and 'South Vancouver'areas of the city were no more, and perhaps more importantly, no less likely to have contact with theVIRHB Home Hospice Program, compared to individuals living on the 'West Side' of the city). However,the analysis does not take into consideration how variation in demand for services (across socio-economicgradients) might have influenced the results. The analysis fails to answer important questions related toboth the appropriateness of the contact (in areas where the demand for services might be high) and thedegree of unmet needs (in areas where the demand for services might be low). A map of the geographicareas described in our analysis can be found in Appendix D.Individuals under the age of 75 years were more likely to have contact with the Program, compared tothose individuals 86 years of age or older (i.e., individuals 16-50 years of age: odds ratiose l.Z; individualsaged 51-65: odds ratio=1.8; and individuals aged 66-75: odds ratio=1.5). Women were slightly morelikely (odds ratioelS) to have contact with the Program, compared to men. This is not that surprisingwhen one considers that women are typically the primary caregivers in a relationship, thus potentiallyminimizing the need for men to seek formal care. Finally, the likelihood of having contact with theProgram increased substantially over time - in 1993, individuals were almost twice as likely to havecontact with the Program, compared to individuals who died in 1990. Again, this is not surprising whenone considers that palliative care was beginning to gain a higher profile by 1993.9Table 1 Logistic Regression Procedure for "Contact1•Major Cause of Death: Cancer (N=3,315)Variable Chi-Square Odds RatioCity Centre 0.0043* 1.57Location of Home Downtown East Side 0.7842 0.963Residence2 North East 0.8009 0.972(comuared with Midtown 0.0612 0.804We.,t Sidel South Vancouver 0.4104 0.9Age Group (16-50 years) 0.0038* 1.737Age Group Age Group (51-65 years) 0.0001 * 1.821(comoared with Age Group (66-75 years) 0.0011* 1.592Age Grouv ge 86 sis I Age Group (76-80 years) 0.0825 1.304Age Group (81-85 years) 0.1467 1.257Marital Status 0.0344* 1.187Gender 0.0002* 1.35Year (1991) 0.0864 1.19Time Year (1992) 0.000 1* 1.774(comaared with 1990 ) Year (1993) 0.0001 * 1.934* indicates statistically significant resultsI in this particular analysis "contact" was defined as those individuals who were clients of the VIRHB Home HospiceProgram - these individuals mayor may not have had some contact with the other components of the publiclyfunded palliative care system2A map of the geographic areas described in the analysis can be found in Appendix AWith respect to HIV deaths Table 2 shows that contact with the V/RHB Home Hospice Program was notdependent on the location of an individual's home residence. Age group does not appear to have aninfluence either. It's curious that individuals were more likely to have contact with the program in 1992compared to the other three years (odds ratio =2.6). It is recognized that the delivery of home-basedpalliative care is dependent on the presence of adequate levels of informal support. Changes, between1992 and 1993 in the number of AIDS patients who had access to informal caregiver support from a well­partner might assist in explaining the results.10Table 2 Logistic Regression Procedure for "Contact"Major Cause of Death: HIV (N=494)VariableCity CentreLocation of Home Downtown East SideResidence2 North East(compared with MidtownWest Side) South VancouverAge Group(compared withAge Group ge 16 yearsand Ie 30 years)Age Group ge 31 yearsChi-Square Odds Ratio0.9657 1.0130.9184 1.0460.4337 0.6940.2557 0.60.9867 1.0120.2929 0.686Year (1991 )Time Year (1992)(compared with 1990) Year (1993)0.69120.0034"0.10031.312.6161.577* indicates statistically significant resultsLin this particular analysis "contact" wasdefinedas thoseindividuals who wereclientsof the VIRHBHomeHospiceProgram- these individuals mayor maynot have hadsomecontactwiththeothercomponents of the publiclyfunded palliativecaresystemI A mapof the geographic areasdescribed in the analysis canbe foundin Appendix A11Location of Death: All Causes of Death4In terms of where people die, the place of death for adults who were also residents of Vancouver at thetime of their death, is shown in Figure 8. The proportion of individuals who die at home has increasedfrom 16%, in 1990, to 34% in 1993.Figure 8 Place of Death for Vancouver Residents 1990-1993All Causes of Death (excludes accidents/injuries) (N=1l,738)o Institution- nomclOther1990 (0=2,877) 1991 (0=2,865 )Years1992 (0=2,978 )We examined place of death to determine if there was any relati onship between place of death and anumber of variables including: gender, age, and socio-economic status. It is important to note that deathsrelated to 'accidents/injuries ' were excluded from this analysi s. Figure 9 shows that for all years, aslightly higher percentage of home deaths was noted for males, relative to females (p < .05). Thisdifference could be explained by a number of factors, directly or indirectly associated with gender. Forexample, it may be more likely that males have a careg iver at home and the support enables a home death .Or, the differing patterns of cause of death for males and females may allow for a larger proportion ofmales to die at home.4 The analyses excluded cases where the major cause of death was related to an accident or injury.12- I rtution1.'/0theFigure 9 Place of Death for Vaucouver Residents 1990-1993All Causes of Death (excludes injuries/accidents) (N=11,738)Described by Gender I ns 183 85 83 86 85 o II0 III8065 6835 ~2n " l20"14 nn10090807060% 5040302010omale female male female male female male female1990(n=2,877)1991(n=2,865)1992(n=2,978)1993(n=3,018)YearsAge at the time of death might also explain some of the differences in location of death for males andfemales. Figure 10 shows for example that, with the exception of those between 16 - 30 years of age, thelikelihood of dying in an institution increased with age (p < .05). Interestingly, this pattern disappeared,and even reversed somewhat in 1993. Given that there is generally a larger proportion of older females inthe population, it's not surprising then to find a higher proportion of females dying in institutions.Although it could also be argued that there might be an interaction effect between age and gender, logisticregression analysis demonstrated that there was none (p > .05).Figure 10 Place of Death for Vancouver Residents 1990-1993All Causes of Death (excludes injuries/accidents) (N=11,738)Described by Age Group I - Inst itution Io ier- --- -l-T1~ I ~ ~ ~ h ~ ~ r r,I 1 II n I10090807060%5040302010oIii. n - 51 . 66. l rJO 50 65 7S 16Hi- )I . 51. 66. trJO 50 65 7S 7'16. J) . 51. " . ee3D SO 65 75 "16 . 31. 51· 66- II30 so 65 15 "1990(n=2,877)1991(n=2,865)1992(n=2,978)1993(n=3,018)YearsWith respect to socio-economic status we used ' location of patient home residence ' as a proxy for socio­economic status. Figure 11 describes the place of death for Vancouver residents by 'location of homeresidence'. There were significant differences noted, with fewer 'home' deaths observed in 'SouthVancouver' and 'Midtown' (chi-square p < .05).13Figure 11 Place of Death for Vancouver Residents 1990-1993All Causes of Death (excludes injuries/accidents) (N=11,524)Described by Location of Home Residence '---O--lo-s"'""lI-' U"'""li-o,-, ---,_ n ollle/Ollar r10090807060% 5040302010---- I- - I-- -- -- - - 1- --- - - - I - -I- f- ,- - - - 1- -- -- --- -11--f------ - -1- - --- ---- -.4- 4- + • • •~ s ; ~ ; ~ ~ ~ ~ N ~ ; ~~ ~ ~-City Centre Downtow n ES North Easl Wests ide(n~ I,339) (n =I ,410) (n =2, 328) (n =2,783)Location of Home ResidenceLocation of Death: Cancer and HIVCancer DeathsM idtown(0 =2,086)South van couve r(n =I ,578)ti Institutlon- Home/OlherFigure 12 shows that by 1993 about 30% of deaths related to cancer were home deaths.Figure 12 Place of Death for Vancouver Residents 1990-1993Cause of Death: Cancer (N=3,631)100r-- -r-- ---,------,-- -,-----,---r-- - - -r-- ---,- ­90807060% 5040302010o1990 (0=966) 1991 (0=870)Years1992 (0=895) 1993 (0=900)Figure 13 shows that there were virtually no differences with respect to gender and place of death for thecancer deaths (chi square p > .05).1487 86 88 85 85 85 1069 7131n13 14 12 l " nl n l10090807060% 5040302010oFigure 13 Place of Death for Vancouver Residents 1990-1993Cause of Death: Cancer (number of valid cases=3,406)Described by Gendermale female1990(11=952)male female1991(11=797)male female1992(1\=832)male female1993(0=825)YearsFigure 14 shows that for 1991 and 1992 the likelihood of dying in an institution increased with age (chisquare p < .05).Figure 14 Place of Death for Vancouver Residents 1990-1993Cause of Death: Cancer (number of valid cases=3,406)Described by Age Group I .Insli lu l~o llol1w1O r-I- - - -- -T -1--r ~ 1 1h } r1 1-I II II I10090807060% 5040302010oHi. 31· 51· 66. eeJO 50 6S 75 7616- 31· 51· 66- ae)0 SO 65 75 7616. 31· 51· 66- II:f30 50 65 75 7616- .1l - 51. 66. i!f30 SO 65 75 'Ui1990(0=952)1991(11=797)1992(1\=832)1993(11=825)YearsFigures 15 and 16 describe deaths related to cancer by location of home resid ence. Figure 15 shows aslightly higher proportion of home deaths amongst residents of the 'West Side ' (p < .05).15Figure 15 Place of Death for Vancouver Residents 1990-1993Cause of Death: Cancer (N=3,631)Described by Location of Home Residence100r--r- -,- - -,r--- r---.r-- ,.- -,--- ,---- --r- --,.----,- --,- ­90807060% so40302010oCity~~~j~DowntownES(n=445)North East(0=827)Westside(0=884)Midtown(0=652)SouthVancouver(0=490)Location of Home ResidenceWhen the data for cancer deaths were analyzed by year of death (see Figure 16) the results showed thatthere were differences in place of death, depending on the 'location of home residence'(chi square p < .05); however, each area was similar in that each showed an increase in home deaths overtime.Figure 16 Place of Death for Vancouver Residents 1990-1993Cause of Death: Cancer (N=3,631)Described by Location of Home R esidence Dlnstit ulion• IIom e/O Ibn10090807060% 5040302010- - f---- .- i- -- f---- - '- -- - I- - - - ·- - - '- - - - I- -- - - I- - c--- - - ·- - - f---- - c--- - ·- - - -- - - - --- - - - - - -IC ity Ce ntre( o=333)Dcwn towu t:S No rth Eas t Westside(00 445) (0 =8 27) (0 =884)Location of Home Re sidence~ ~ ~ ~Midtown(0 0 652)~ £ ~ ~SQuth vanecuve r(n - 490)A logistic regression procedure was applied to the data to determine if there were any variables whichpredicted 'place of death '. A separate analysis was undertaken for cancer and HIV deaths.With respect to cancer deaths the analysis suggested that some of the factors which determined place ofdeath include the area of city in which the patient lived - individuals living on the 'West Side ' were morelikely to die at home, compared to individuals living in any other location.16With respect to contact with the publicly funded palliative care system, patients were almost twice aslikely to die at home if they were clients with the V/RHB Home Hospice Program, compared to those whohad no contact with the publicly funded palliative care system. Finally, those individuals who died in1993 were almost 2.5 times as likely to die at home as those individuals who died in earlier years. Theresults of this analysis are shown in Table 3.Table3 Logistic Regression Procedure for Place of DeathMajorCause of Death: Cancer (N=3,539)Variable Chi-Square Odds RatioCityCentre 0.0028* 0.574Location of Home Downtown EastSide 0.0351* 0.701Residence NorthEast 0.0064* 0.698(comparedwith Midtown 0.013* 0.701WestS ide) SouthVancouver 0.0119* 0.674AgeGroup(16-50 years) 0.1354 1.411Age Group AgeGroup(51-65 years) 0.3359 1.209(compared with AgeGroup(66-75 years) 0.4259 1.162Age Group ge86 yrsI AgeGroup(76-80years) 0.3132 1.226Age Group(81-85 years) 0.6888 1.088Marital Status 0.0401* 1.225Gender 0.873 0.985Year(1991 ) 0.8821 0.979Time Year(1992) 0.7315 1.049!compared with 1990) Year(1993) 0.0001* 2.574Contact Contactl! 0.0001* 1.88(comparedwith Contacti 0.0001* 0.166Contact3 -- no_{;Q!11fJ£:li* indicates statisticallysignificant resultsI in thisparticularanalysis "Contact!" wasdefined as contactwith the VIRHB HomeHospiceProgram- theremayor maynothave been somecontactwithone(or more) of the otherspecialized hospiceor hospital-basedpalliativecareservices(e.g., PaJ, BCCA5th floor, referralto a palliativecareconsultteam)2 in this particularanalysis "Contact2" wasdefined as contactwithone of thefollowing specialized hospiceorhospital-basedpalliative careservices: PaJ, BCCA(5thfloor), referral to a palliativecare consultteam3 in this particular analysis "Contact3" wasdefined as no contact withany component of the publiclyfundedpalliative caresystemin Vancouver17HIV DeathsFigure 17 shows that by 1993 about 34% of AIDS deaths were home deaths.lID Institution• Home/OtherFigure 17 Place of Death for Vancouver Residents 1990-1993Cau se of Death: HIV (N=539)10090807060% 504030201001990 (0=117) 1991 (0=101) 1992 (0=137)Years1993 (0=184)With respect to age group and place of death, Figure 18 shows that there was an increased likelihood ofdying in an institution which increased with age (chi square p < .05).1993(0=176)16-30 31.50 5J .65 66-75 llt 76. ..,. JI.SO S14' " .75 ,.7'1992(0=127)16·JOJI ·SOSI ·6566·75li!t761991(0=92)Figure 18 Place of Death for Vancouver Residents 1990-1993Cause of Death· HIV (N 512)=Described by Age Group I • Institution Io Home/Ot her- 1- --- -- ---h- --II r1 --1 II I I I II16·3031-5D5J .fi5 66·7Su 761990(0=117)10090807060% 5040302010oYears18Figure 19 describes deaths related to HIV by location of home residence and shows a slightly higherproportion of home deaths amongst residents of the 'West Side' and 'North East' areas of Vancouver(chi square p < .05). Due to the small number of deaths for this group (N=539) the data were notanalyzed by year of death.Figure 19 Place of Death for Vancouver Residents 1990-1993Cause of Death: HIV (N=539)Described by Location of Home Residence100 -r---r---r------,----,-- - -,---,-- --,----r- - -,----r- - -,----r-90807060% 5040302010oCit)·Centre(n=298)DowntownES(0=60)NorthEast(0=37)Westside(n=91)Midtown(0=40)SouthVancouver(0=13)Location of Home Residence19With respect to Hl.V deaths the logistic regression analysis (see Table 4) shows that place of death was notdependent on the location of the patient's home residence or the age group of the patient. Individualswho died in 1993 were 2.3 times as likely to die at home compared to individuals who died in earlieryears. Individu als who had some contact with specialized services within the palliative care system (i.e.contact with one of the following: PCU, BCCA (5th floor), referral to a palliative care unit) were less likelyto die at home compared to those with no contact at all (p=.03 and odds ratio=.198). Interestingly, contactwith the VIRHB Home Hospice Program did not seem to influence the location of death for HIV patients(p =.0888).Table 4 Logistic Regression Procedure for Place of DeathMajor Cause of Death: HIV (N=533)Variable Chi -Squ ar e Odds RatioCity Centre 0.8327 0.943Location of Home Downtown East Side 0.1282 0.521Residence North East 0.7857 1.12(co m paretlwitlJ Midtown 0.2 15 0.543West Side ) South Vancou ver 0 .6163 0.69 7Age Group Age Grou p ge 31 years 0 .528 1 1.223(comp ared withAg e Grou p ss 16 yearsan d Ie 30 years)Year (1991) 0 .6493 0.847Time Year (1992) 0.4267 1.287(com pnr ed with J990) Year (1993) 0.0025 2.38 5Contact Contact! J 0.0888 1.575(com va red with Contact22 0.0362' 0.198Contact] -- 110 contner)... indicates statis tically significant result s1 in this particular analysi s "Contact!" was de fined as con tact with the VtRIlB Home Hospice Pr ogram -- theremayor may not have bee n some contact wi th one (or more) of the oth er spec ializ ed hospice or hospit al-basedpallia tive care servi ces (e.g., peu, BCCA 5th floor, referral to a palli ative care consult tea m)2 in this particular ana lysis "Contact2" was de fined as conta ct with one of the following specialized hospice orhospi tal-based palliative care services : peu, BCCA (5 th floor ), referral to a palliative care consult team3 in tbis part icu lar analysis "Contact3" was defi ned as no cont act wi th any compon ent of the pub licly fundedpalliative care sys tem in Vanco uverUnfortunately, the analyses of cancer and mvdeaths described above focused strictly on 'location ofdeath'. It would be useful to distinguish between individuals, whose length of stay in hospital at the timeof death was one or two days, and those whose length of stay was several days or weeks. The distinctionis important because many individuals are able to remain at home until very close to the time of theirdeath, but for personal reasons (e.g., religious, informal caregiver burnout, etc.) choose to die in hospital.In particular, it would be helpful to know to what extent length of stay in hospital at the time of death isinfluenced by use of formal support prior to hospitalization. This information would provide a moreaccurate picture of how pre-death home-based care impacts on the acute care system.20Other Causes of DeathAlthough the traditional concept of palliative care has focused on cancer, and more recently AIDS, datafrom this study suggests that palliative care may have a much broader focus. Figure 20 shows that 33%(n=1,425) of the deaths in 1990 had 'formal contact' with the Vancouver palliative care system. Thisincreased to 38% (n=1,646) in 1991,45% (n=2,039) in 1992 and 46% (n=2,164) in 1993. This analysisincluded all causes of death and included both Vancouver and non-Vancouver residents (N=17,893).Figure 20 Proportion of Study Population! Who had "Formal Contact" withVancouver-Based Publicly Funded Palliative Care Services 1990-1993(N=17,893)100 D Collt acl90 .Nu Contact8070 6760% 504030201001990 (n=4 ,321 ) 1991 (n=4 ,334) 1992 (11=4,532)Years1993 (n=4,706)I this analys ts Inclu ded v ancou ver and nan -V ancou ver res ident sForty-eight percent of patients seen by the Vancouver palliative care system were cancer or AIDS patients.Figure 21 shows that approximately 26% of patient contacts were related to those with circulatory diseaseand approximately 10% to those with respiratory disease. The cancerlHIV group accounted for almost halfof the utilization of palliative care services, while those with circulatory disease accounted for about 25%of the utilization.100908070% 605040302010oFigure 21 Proportion of Study Population Who had "Formal Contact" withVancouver-Based Publicly Funded PalliativeCare Services 1990-1993Described by Major Cause of Death (N=7,279).----- - - --,IilHIV• Cancero Circulatoryo Respiratory. Other"1990 (11=1,440) 1991 (n=1,660) 1992 (11=2,021)Years1993 (n=2,158)• "other" refers 10all other causes of death including Ihose related to the digestive system, accidents and injury21Conclusions and RecommendationsThe historyof palliative care in Canada and elsewhere has beenclosely associated with the treatmentofpatientswith terminalcancer. Morerecently, with the adventof AIDS, therehas been widerecognition for the roleofpalliative care as a component in AIDScare. For the period1990-93, it would appear that there has beenreasonable (and improving) accessibility to the formalpalliative care system in Vancouver for patientswhodiedofcancer/AIDS. The data indicatethat by 1993, about77% of Vancouver residents whodied of cancer/AIDShad somecontactwith the palliative care system. Of particularnote, theredid not seemto bea strong socio­economic gradient(as measuredbypatient's geographic residence) associated withthe degreeof access topalliativecare services. It is unclearat this point whetherthe trend seenin the 1990-93 period will continuetoincrease, or whether therewillbea leveling off, sinceone wouldanticipate that even for cancer/AIDS patients,that not everypatient wouldrequireformal palliative care services.This study did not quantify the length of 'contact' with the palliative care service, the timing ofthe contactrelative to the date ofdeath, nor the qualitative aspects of the palliative care service.Recommendations:1. Maintain and build upon the existingpalliative care services, whichseemto beprovidinggoodaccess to careforcancer/AIDS patients.2. Continuedata analysis of utilization of palliative care services for the 1993-97 period, includingRichmond aswellas Vancouver. Expand the studyto includemoreinformation on the length of contact,timeliness ofcontact,appropriateness and effectiveness of palliative services provided. Includeestimates of costingfor the variouscomponents of the formal palliative care services.There are differences in the patterns ofuse ofpalliative care services according to the type ofcancer, e.g. 70%contact for lung cancer Vs 85% contact for breast cancer. Further study ofsuch patterns may be useful touncover any gaps in services, and also plan for future needs for palliative services.Recommendation:3. Further studyof the patternsof delivery of palliative care services according to the site of cancer, includingreferral patterns.22Although the data in this study is somewhatlimited, it does suggest that patients known to one componentofthesystemare not necessarilyknown to other parts. In particular, one would expect that most ofthe patients whohad hospital admissions(either to the peu or other parts ofthe hospital but seen by the consultservice) wouldbe knownto the community Hospice Program. However, it appears that 30-50% ofsuch contactswere not seenby the communityHospice Program(it is understoodthat there wouldbe a certainproportion ofthese patientswho initially presented to hospital with their terminaldiagnosis and died in hospital; therefore, not returning tothe community).Recommendations:4. Continueto informthe general community, and alsophysicians as to the availability of the HomeHospiceProgram.5. Improvethe coordination/integration of community and institutional (bothhospitaland long term carefacility) palliative care services.One ofthe thrustsofpalliative care, and in particularthe Home Hospice Program, has been to support thepatient and theirfamilies if they choose to remainat home to die. By 1993, about 30% ofcancer/AIDSdeathswereat home (increasing over the 1990-93 studyperiod). Regressionanalysis ofthe data showsthatfor cancerdeaths, there wasmuch higher likelihoodofa home death if there was contact with the Home Hospice Program.Of interest, a similarfinding was notfound for AIDS patients, suggestingvery differentpatterns ofdying andhealth care/socialfactors. The data, althoughsuggestingfew deathsfrom cancer/AIDS in long term carefacilities. did not allow more detailed analysis.Recommendations:6. Maintain and enhance the HomeHospice Program,both increasing the availability of adequatehomecarestaffand shift care nursing resources to supportpalliative care for peopleat home.7. More detailed studyof deaths in LongTerm CareFacilities.While thefocus ofthis report was on patients who died ofcancer/AIDS, it became clear that palliative care hasa much broaderfocus. Thus, while some 90%ofpatients in the peu's had cancer/AIDS, whenyou include thecommunitycontacts, over 50%ofthe patients who had contactwith theformal palliative care servicesdiedfromnon cancer/AIDSillnesses(most notably circulatoryand respiratory ailments). Further study is requiredas towhetherthe palliative care needs ofthe non cancer/AIDSpatients are being met, and even whetherthere isadequate recognitionofsuch needs.Recommendations:7. Further studyof non cancer/AIDS patients whohavecontactwith palliative care services, and also whetherthereare non cancer/AIDS patients who mayhavebenefited from palliative care services whodid not havecontact.8. Based on the recommended further studies and an improved palliative care information system, developa regional plan for services in Vancouver/Richmond.23ReferencesCanadianPalliative CareAssociation. Palliative Care:Towards a Consensus in Standardized Principles ofPractice, 1990.BritishColumbia. Royal Commission on HealthCare and Costs. Closer to Home. Victoria, 1991.CardiffK, LeMireN, Robens-Paradise Y, FryerM. Evaluation of the Closer toHomeProgram: IntegratedPalliative CareProgram. VancouverlRichmondHealth Board, Vancouver, March 1997.24Appendix APalliative Care Services in VancouverPalliativecare is provided in a varietyof settings: home, "hospice", generalhospital ward,or hospitalpalliativecare unit. The palliative care team variessomewhat according to the setting, but generallyincludes nurses,physicians, social workers, pastoral care,physiotherapy (PT)/occupationaltherapy(01'), music therapy(in somesettings), pharmacist, dietitian, volunteers and administrative and supportservices. This section provides adescriptive summaryof the formalized palliative care services in Vancouver over the 1990-93 studyperiod:1) Hospitals• Palliative Care Units (pCU's) at Vancouver Hospital and St. Paul'sHospital• BrC, CancerAgency(BCCA)2) "Hospice"• May Gutteridge CommunityHome(May's Place)• NormandyHouse3) Community home care• Vancouver HealthBoardHomeHospice ProgramHospitalsThe hospital basedpalliative care units provide terminal care for patientswhorequire its resources to dealwithsymptom management, and/or are unable to remain at homeor otherfacility. A percentage of thesepatientsdieon the PCu. Patients admitted to the PCU for acutesymptom management (e.g, pain or nausea) are dischargedonce theyare stabilized. Thirdly,there is a groupof patientswhocometo the PCU for respite care, whichallowscare-givers and familymembers to take a breakfrompatient care. The policyof bothPCUs in Vancouver is thatall admissions are DNR (do not resuscitate in caseof cardiorespiratory arrest).Vancouver Hospital rcu and Consult ServiceThe PCU wasestablished in 1982,and consists of a 17 bed unit on the 3rd floorof WillowChestPavilionatVancouver Hospital. Generally, one bed is kept available for emergency admissionsfrom the community, and amaximum of twobeds at any given time are used for respitecare. The rooms are single (seven) or doubles(five), withwashrooms in each room. Allocation of the single rooms is basedon need, with no additionalcharges. Effortsare made to provideas home-likean environment as possible. The palliativeconsultserviceconsists mainlyof the palliativecare physician and/orclinical nurse specialist who seepatientsrequiringpalliative care on otherwardsof the hospital or the CancerAgency. Manyof thesepatientsare later transferredor admitted to the PCu.25St. Paul's Hospital PCD and Consult ServiceThe PCU was established in 1989. It consists of a 15bed unit on the 10th floor, D wing of St. Paul's Hospital.About40-50%of the beds are used for AIDSpatients. Twobeds are allocated for respitecare. An effortis madeto keepone bed availablefor emergency admissions. There are four singlerooms, two double, and one 3-bedroom, and one 4-bedroom. Allocation of the singlerooms is on an as-needbasis, with no additionalcharges.Palliativecare physicians do consultations to other units in the hospital, and to the Emergencyon request. Apalliativecare outpatientclinic is also held once a week.B.C. Cancer AgencyThe B.C Cancer Agencyplays an importantrole in the palliativeand supportive care of cancer patientsthroughoutthe province. Estimatesbasedon 1980stats from the U.S. suggestthat sevenpercentof cancerpatientswill receivepalliativechemotherapy. Between 1985and 1991,45.6% of radiation therapycoursesinB.c. werepalliative.Palliativecare is provided in both inpatient and outpatientsettingsin the BCCA centres,including theVancouver Centre. The Cancer Agencyin Vancouver has 60 inpatientbeds, and at any given time there areabout 15patients who are likelyto requirepalliative care services.HospicesNormandy HouseThis 10 bed unit openedin 1992(and closedin 1998)for patients with AIDS who did not require hospitalcarebut whocould not remain in the community. Althoughone bed was originallydesignatedfor respite, thedemandfor bedsresultedin all 10bedsbeing used for permanentresidentsfor most of the time. Thus, somepatientswere admittedfor terminalcare, somepatients for a structured, safeplace to live, and on occasion,patients wereadmittedfor one-twoweekrespite.May's PlaceMay GutteridgeCommunityHomeor "May's Place" began in October 1990. It is locatedin Vancouver'sdowntown Eastside,on the top floorof a three storeybuilding. There are six beds (twowith privatebaths andthe other four beds share twobaths). May'sPlace is a non-profit, community based facility that provides comfortcare to adults who are facing the end stagesof terminalillness. Residents are admitted with the fullunderstandingthat their diseaseis terminaland that activetreatmentswill not be pursued whileat May'sPlace.Community Home CareThe Vancouver Health BoardHomeHospice Program was started in 1983. Being a communitybasedprogram(i.e. patientsare seen in their homes), there is no facility with "beds". The HospiceProgram providessupportand palliativecare services for patientsin the "community". These are primarilyat home,but may be in longterm care facilities as well.26Appendix BVancouver-Related Cancer Deaths - Described by Age GroupVancouver-Related Cancer Deaths 1990-1993Trachea/Bronchus/Lung (N=1,229)Described by Age Group10090807060% 5040302010u u u 016·304 7 5 ...31·50 51·6 5Age Group66·75.1990. 199111]1992m 1993xr 76Vancouver-Related Cancer Deaths 1990-1993Colon (N=494)Described by Age Group10090807060% 504030 .2010z Io ·16·30 3 1·50 51.65Age G ro u p2766·7501990. 1991m 1992Clll99350ae 16Vancouver-Related Cancer Deaths 1990-1993Breast (N=347)Described by Age GroupVancouver-Related Cancer Deaths 1990-1993Prostate (N=254)Described by Age Group10090807060% 50403D2010o .16· 3010090807060% 50403D201016·3031·5 031·505751·65Age Group51·65Age Gro up2866·7566.7501990. 1991llJ 1992m 199301990. 1991W1992m1993~. 76Appendix CVancouver-Related HIV Deaths - Described by Age GroupVancou vcr-Re lated Deaths 1990-1993HIV (N=654)Described by Age Gro up8210090807060% 5040302010016-30 31-50 51·65Age Gro up29o I I I66-75.1990. 1991W1992111 1993o 0 0 0ge 76Appendix 0......,./e11IIa:a\.1J111IIIfeSth.Vancouver-Oakrldge-Marpore-Sooset-'klaia Fresecvfew-Killarney-Olll1lplaln Hel{#a"eDB. . ~• c .....z.'---~--.---- _ ._----eMidtownuI41.t II•••'--0; ~,.eTe""'/~1Alle,,"•e•:aEi...u-MtlsquoElll -Mt. Pteosoot-University -Sth. CerriJieErdMment lmds -LittleMnt.JHilay-West PointGrey ' . Perk-l<il&nOOO .,-Kensington-~"-AlbWJs Ridge-9laJdllessy-l<errisdalaeWestsideoMa.!!is'lt;::Ica16th Avua• .51111 bill..»<-Ho&lings Sln'Isa-Cedar Coltoge-RenfrewCollingwoodeNorth Easte-OowntownEestside-Slrolhcooa-GrandviewWoodlands-Goslown-CitygatB6I '"-Wo6tEnd-False Creek-Slh.Grenville-Central BusinessDistrict-Yaletlmn &Downt(JN(l Sth.-FairviewoCity Centre

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