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Hospital barriers to the procurement of cadaveric kidneys for transplantation Gabel, Gwenda Bonita 1989

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HOSPITAL BARRIERS TO THE PROCUREMENT OF CADAVERIC KIDNEYS FOR TRANSPLANTATION By GWENDA BONITA GABEL B.A., University of Saskatchewan, 1968 M.S.W. University Of British Columbia, 1971 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF SCIENCE in THE FACULTY OF GRADUATE STUDIES Department of Health Care and Epidemiology We accept this thesis as conforming to the required standard THE UNIVERSITY OF BRITISH COLUMBIA APRIL, 1989 ©Gwenda Bonita Gabel, 1989 In presenting this thesis in partial fulfilment of the requirements for an advanced degree at the University of British 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 or her representatives. It is understood that copying or publication of this thesis for financial gain shall not be allowed without my written permission. Department of The University of British Columbia Vancouver, Canada DE-6 (2/88) - i i -ABSTRACT Several studies have shown that hospital-based procurement programs f a i l to secure sufficient donor kidneys in-house. This study examines the institutional and knowledge barriers to the procurement of donor kidneys for a typical urban teaching hospital and the reasons for the failure. A combination of documentary examination, survey and interview methodologies were used to achieve study objectives. Hospital personnel, mostly those in contact with the donation process, constituted the study population, in particular, nursing personnel, physicians and hospital administrators. It was found that (1) gaps exist in the procurement process, i.e. not a l l the donor kidneys were accessed under existing policies and guidelines; (2) major institutional and knowledge barriers exist which inhibit the procurement process. For example, institutional policies and procedures lacked c l a r i t y , definition or were non-formalized. Also relevant hospital personnel were unable to identify a l l suitable donors. This study adds to our knowledge of impediments to the donor kidney procurement process. It highlights the need to formalize, c l a r i f y and define institutional policies and to provide adequate knowledge to relevant staff of the institution. The study also indicates a need for coordination of the donation process in order to secure adequate numbers of donor kidneys. - i i i -TABLE OF CONTENTS Page ABSTRACT i i LIST OF TABLES v i i i LIST OF FIGURES ix ACKNOWLEDGMENT x CHAPTER I INTRODUCTION 1 Background 3 Scope of Study 4 Knowledge Barriers 5 Institutional Barriers 6 Research Questions 7 CHAPTER II LITERATURE REVIEW 9 Treatment for End Stage Renal Disease . . . . . . . . 9 Kidney Transplantation: An Overview 10 Need / Demand for Transplantation 10 Supply of Transplantable Kidneys 11 Kidney Procurement Process 12 Barriers to Procurement of Cadaveric Kidneys in Hospitals 15 Absence of Defined Policy Within the Hospital 16 - iv -Lack of Knowledge About Donor Suitability 17 Other Factors Influencing Consent and the Donation Process 17 Summary 19 CHAPTER III METHODOLOGY . . 21 Literature Review 21 Documentary Examination 21 Survey of Professional Staff 23 Interviews 24 Data Analysis 25 CHAPTER IV RESULTS OF THE STUDY 26 Documentary Examination 26 Survey and Interview 27 Demographic Information, Position and Experience of Respondents 27 Ages of Respondents 27 Sex of Respondents 29 Hospital Positions of Respondents . . . . 29 Institutional Barriers 29 Comments of Respondents About Institutional Policy 31 - v -Institutional Procedures 33 Comments of Respondents on Coordination of Procedures 35 Knowledge Barriers 37 Selection of Appropriate Diagnostic Categories 37 Consent for Donation 39 Experience with Donation Process . . . . 39 Other Barriers to Procurement of Kidneys . . . 41 Attitudes of Staff 41 Staff Initiation of Donation Process . . 44 Professional Groups as Barriers 44 Comments About Other Barriers to Kidney Procurement 47 Data for Current and Previous Studies . . . . 50 CHAPTER V DISCUSSION AND SUMMARY 54 Institutional Barriers . 54 Knowledge Barriers 56 Staff Attitudes to Kidney Donation 57 Staff as Initiators or Barriers to the Donation Process 57 Comparison of St. Paul's Hospital and Ontario Task Force Study 58 Recommendations 59 Limitations of Study 60 Suggestions for Further Study 60 - vi -BIBLIOGRAPHY 61 APPENDIX 1 New Patients by Age Group at Registration, Canada and Provinces, 1986 64 Number, Rate and Age of New Patients 65 APPENDIX 2 Summary of Treatment Parameters for A l l Patients on December 31, 1986, Canada and Provinces 66 Al l Treatments in Canada and the Provinces . . . . 67 APPENDIX 3 Criteria for Kidney Donor Selection 68 APPENDIX 4 Letter of Consent 69 Study Questionnaire . 70 APPENDIX 5 Consent Form 78 Interview Questions 79 APPENDIX 6 St. Paul's Hospital Policy Statement 80 - v i i -APPENDIX 7 Comments of Respondents on Institutional and Knowledge Barriers to the Kidney Donation Process Comments on Institutional Barriers 84 Comments on Knowledge Barriers 86 APPENDIX 8 Pacific Organ for Retrieval and Transplantation Manual (PORT) 88 APPENDIX 9 Certificate of Approval, University of British Columbia 104 Certificate of Approval, St. Paul's Hospital 105 - v i i i -LIST OF TABLES Table Page 1. Age, Sex, Years Experience of Respondents by Position Held 28 2. Institutional Polices as Barriers 30 3. Institutional Procedures as Barriers 34 4. Knowledge Barriers to the Selection of Potential Kidney Donors . 38 5. Knowledge Barriers to Obtaining Consent 40 6. Staff Knowledge About Procurement and Transplant 42 7. Other Barriers: Personal Feelings Towards Donation as Barriers 43 8. Initiation of Donation Process 45 9. Appropriate Initiators of Donation Process . . . . 46 10. Individuals as Barriers to Procurement 48 11. Institutional Procedures as Barriers: A Comparison of St. Paul's Hospital and Ontario Task Force Study 51 12. Knowledge Barriers to the Selection of Potential Kidney Donors: A Comparison of St. Paul's Hospital and Ontario Task Force Study 52 - ix -LIST OF FIGURES Figure Page 1. Procurement Process for Donor Kidneys 14 2. Methodology and Study Procedure 22 - x -ACKNOWLEDGMENT I would like to take this opportunity to thank a l l of those people who helped make the completion of this thesis possible. In particular, I wish to express my sincere gratitude to Dr. Godwin Eni, my thesis adviser, who demonstrated much patience and support for me throughout the project. His s k i l l and enthusiasm was greatly appreciated. I would also like to express my appreciation to my committee members, Dr. Joseph Tan, Dr. David Landsberg and Mr. Ron Mulchey. Most of a l l , I am grateful to my husband who provided support and assistance with this thesis. - 1 -CHAPTER I  INTRODUCTION Human organ transplantation is now an accepted, therapeutic modality for the treatment of patients with irreversible, end stage renal failure. (Grant et al., 1986) Advances in technology have, over the past decade, greatly improved the success of such procedures. Today, transplantation offers the patient improved chances for survival and the opportunity to return to an active, functional l i f e . (Robinette et al., 1985) This study examines the obstacles associated with procuring transplantable, cadaveric kidneys in a teaching hospital. The role of teaching hospitals as tertiary care, referral facilities is essential in the identification of patients for donorship. They are also important in obtaining consent from relatives of patients and in retrieving organs. The hospital ensures that the donor kidneys are preserved in viable condition for transplantation and transported to recipients where they will be surgically implanted. The number of transplants performed has rapidly increased and so has the demand for viable organs. For example, in 1987, 72 kidneys were imported from outside of British Columbia for the provincial transplant programs. (PORT, 1987) Many authors have indicated there are is an adequate number of organs potentially available but that the problems appear to li e in the inability of organ transplant hospitals to obtain - 2 -them. (Bart, 1981; Robinette et al., 1985) What appears to be lacking is an examination of the difficulties related to the procurement of suitable organs for transplantation. If transplantable organs are to be available in numbers sufficient to meet the needs of patients, i t is necessary to identify and examine some of the factors that may constrain the ability of teaching hospitals to obtain donor organs. This is essential i f transplant programs are to secure sufficient numbers of donor organs for their transplantation programs. It has been suggested that institutional policies aimed at facilitating organ donations are the most important factor in the procurement of transplantable organs. Kutner (1987) states that institutional policies provide assistance to professionals in their efforts toward the development of an effective procurement system. An effective procurement system in hospitals requires the acquisition of specific knowledge by professionals about the steps in the donation process. These include identifying donor eligibility criteria, requesting consent for the removal of organs and "maintenance" of the donor prior to organ retrieval. It has also been suggested that in order to procure a sufficient number of transplantable organs, professionals in hospitals should not only be aware of hospital policies which facilitate organ donation but also possess the necessary knowledge about the transplantation program. (Gilmore, 1986). Therefore, this study focuses on institutional policies and knowledge of selected hospital professionals about the organ procurement process in a teaching hospital. - 3 -Background In 1987, the province of British Columbia experienced a severe shortage of kidneys for transplantation. During that year, 140 transplants were performed and only 68 kidneys were procured from within the province. (PORT, 1987) Thus, 72 kidneys had to be imported from out-of-province for provincial transplant programs. St. Paul's Hospital, in Vancouver, British Columbia is one of three hospitals offering transplant programs in the province. It is a 580 bed tertiary, referral and teaching hospital which offers both dialysis and transplantation programs. Its renal transplant program began late in 1986. In 1987, i t performed more kidney transplants than either of the other two teaching hospitals. In the province, 91 or 65% of a l l kidney transplantations were undertaken at the hospital. Of the kidneys procured, 86 came from cadavers and 5 came from living relatives of patients. However, during that same year, only 3 cadaveric donations were obtained from within St. Paul's Hospital. (PORT, 1987) During 1987, there were 753 deaths at the hospital. According to Robinette et al. (1985), i t is estimated that about 3.7% of a l l hospital deaths should be eligible for kidney donation. Therefore, approximately 28 deaths would have resulted in kidney donations. However, since only 3 deaths at the hospital resulted in cadaveric donated kidneys, this represents a net loss of 89% of potentially available cadaveric kidneys for transplantation. - 4 -It has been shown that hospitals which offer both dialysis and transplant programs, such as St. Paul's, are generally more successful at procuring and retrieving organs from within their organization. (Cardella et al, 1985) At issue, therefore, is the inability of the hospital to obtain a greater number of transplantable kidneys as expected. The purpose of this study is to determine what barriers exist to the procurement of transplantable kidneys at St. Paul's hospital. Barriers are defined as impediments to the procurement of usable, cadaveric, donor kidneys for transplantation into patients with end stage renal disease (ESRD). ESRD is a form of permanent, irreversible kidney impairment which makes normal, l i f e sustaining functioning impossible. (Canadian Renal Failure Registry, 1986) Scope of the Study It is recognized that a number of barriers may exist to the procurement of kidneys. These include barriers such as limited resources (financial and manpower), perceived legal or ethical constraints and organizational problems. However, for the purpose of this study, the examination of barriers is limited to two types; namely, knowledge and institutional barriers which have been identified in the literature as key barriers to organ procurement.(Gilmore, 1986; Robinette et al., 1985) Van Der Vliet (1984), Robinette et al. (1985), Oh and Uniewski (1986) and the Medical Royal College of Great Britain (1987) have found that - 5 -"insufficient knowledge" among professional staff in hospitals contributed to the lack of procurement of organs for transplantation. Oh and Uniewski (1986) and Robinette et al. (1985), have stated that the absence of defined policy was a major barrier to the procurement of transplantable organs. Health and Welfare, Canada concurred with these findings by recommending that acute care hospitals develop policies which facilitate donations. (Health and Welfare, Canada, 1984; Gilmore, 1986) For the purposes of this study, knowledge and institutional barriers are defined as follows: Knowledge Barriers 1. Lack of knowledge on the part of key hospital professional staff, such as doctors, nurses and administrators about: a. Eligibility criteria for donorship of suitable cadaveric kidneys b. The kidney donation process, for example, who to call or to consult in the event that they believed they had a potential donor - 6 -2. Lack of information in the hospital about: a. The need for donated kidneys for the transplantation program b. How to ask relatives of terminally i l l patients for consent to the donation of cadaveric kidneys for . transplantation Institutional Barriers These are: 1. Incomplete, unclear or non-formalized hospital policy regarding kidney donation 2. No formalized policy or procedure which encourages staff to initiate the donation process 3. Lack of clarity of procedures regarding the donation process 4. Lack of support from administration or supervisory staff in hospital areas which have patients suitable for kidney donorship 5. Absence of centralized coordination of the kidney donation or retrieval process - 7 -6. Heavy workload burden limiting the capacity of employees to engage in the kidney donation process Research Questions The following questions are relevant to this study: 1. Do knowledge and institutional barriers to the procurement of transplantable kidneys exist at Paul's Hospital? 2. If yes, what relationship is there between these barriers? 3. If no, what are the reasons for the inability to procure kidneys for the hospital's transplant program? This thesis is is organized in the following manner. Chapter II provides a review of the literature relating to organ transplantation and the procurement process. The chapter examines"existing hospital strategies for obtaining sufficient numbers of donor organs for transplant programs. The specific barriers to procurement found in the literature and other possible obstacles or issues are discussed. Chapter III describes the method of the study and data analysis. It discusses the design and development of the questionnaire as well as interview instruments. In particular, the limitations of the study and efforts aimed at minimizing the influence of these limitations are presented. - 8 -In chapter IV, the results of the study are presented followed by a discussion of the findings in chapter V with respect to the study questions and suggestions for further research. - 9 -CHAPTER II LITERATURE REVIEW The review of the literature provides some background information regarding end stage renal disease (ESRD), kidney procurement and' transplantation in hospitals. The review then focuses on the difficulties which hospitals experience with the procurement of suitable kidneys for transplantation. Treatment for End Stage Renal Disease The ability of each human being to eliminate toxins from the body through the kidneys is something that most people take for granted. However, for every 66.5 people out of 1,000,000 population in Canada, permanent kidney impairment makes normal, l i f e sustaining functioning impossible. The condition which is chronic and irreversible, is known as end stage renal failure (ESRF) or end stage renal disease (ESRD). (Canadian Renal Failure Register, 1986) There are two options available for the treatment of ESRD; they are renal dialysis or transplantation. A patient may receive one or both forms of treatment during the course of his illness. In renal dialysis, the highly concentrated toxic materials in the blood are removed through the use of a dialysate solution and a dialyzing membrane. On the other - 10 -hand, transplantation requires the replacement of the diseased kidney with a normal, healthy kidney. (Canadian Renal failure Registry, 1986) Kidney Transplantation: An Overview Kidney or renal transplantation is a surgical procedure where a kidney is transplanted from a donor to a recipient. Since i t is possible for a person to live with just one functioning kidney, during transplant surgery, only one kidney is implanted into the recipient. Transplantable kidneys for patients with end stage renal disease are available from two sources; cadaveric (CAD) or live donors. Kidneys taken from "brain dead" patients, that is, from donors with an absence of brain stem reflexes (cadavers), are used for 86% of a l l transplantations in Canada. (Canadian Renal failure Registry, 1986) Alternatively, donations (one kidney per donor) from healthy, living donors may be used. This group of donors are known as "live-related donors" (LRD) and they may be the relatives of the patient such as a son, daughter or spouse. Need/Demand for Transplantation The incidence or number of new cases of ESRD in Canada in 1986 has been reported as 66.5 people per 1,000,000 in the population or 1683 new patients per year. (Canadian Renal Failure Register, 1986; also see appendices 1(a) and 1(b)). In the same year, the prevalence or the total number of ESRD cases reported was 341.2 patients per 1,000,000 population or 8636 people. See appendices 2(a) and 2(b).In the province of British - 11 -Columbia, 188 new cases and a total of 849 patients reported in 1986. (Canadian Renal failure Registry, 1986) According to Robinette et al. (1985), approximately two thirds of a l l patients can benefit from transplantation. About, 4174 patients or 48% of a l l transplants are alive with a functioning transplanted kidney. If two-thirds or 66.6% of a l l potential transplant candidates could benefit, therefore, 19% of these suitable candidates are unable to obtain a kidney transplantation. This means that 1640 persons are waiting for transplant in Canada (Grant et al, 1986) of which 160 are in British Columbia. According to the Pacific Organ Retrieval for Transplant agency (PORT), this is accurate in terms of the numbers of people waiting for kidney transplantation in British Columbia. Supply of Transplantable Kidneys It has been suggested that the major limiting factor to the number of kidney transplantations performed is the insufficient number of available and usable organs. (Health and Welfare, Canada 1984; Robinette et al., 1985) Since most transplants performed utilize cadaveric kidneys, the greatest need is for the procurement of organs from deceased or "brain dead" patients in hospitals. A number of studies have shown that there are many cadaveric kidneys potentially available but not obtained. (Bart et al., 1981; Robinette et al., 1985) - 12 -Bart et al. (1981) conducted a prospective surveillance by reviewing the death records of 555 potential donors and noted that 2.3% of a l l hospital deaths were potential donors. Studies in Ontario show a higher percentage of possible donors. For example, Robinette et al. (1985) have indicated that 3.7% of a l l hospital deaths could be eligible kidney donors. They also found that only .03% of eligible potential donations were actually obtained. This means that approximately 90% of a l l potentially available kidneys for transplantation were not procured. Similar results were reported elsewhere. A survey of hospital charts in selected Ontario hospitals from 1980 to 1982 was undertaken to determine the number of potential kidneys missed. The result of the study at the eight hospitals indicated that the potentially suitable donors that were missed varied between 45% and 80%. (Robinette et al., 1985) It seems, therefore, that the numbers of kidneys potentially available to hospitals for transplant are much greater than the number that are actually retrieved. Much of the reason for failure to access a l l potentially available kidney donations may li e in the procurement process rather than in the absolute number of those kidneys potentially available. Kidney Procurement Process Cadaveric donor kidneys used in transplantation are procured in hospitals. The process begins when a patient is admitted to the hospital - 13 -and identified by the staff as a potential kidney donor. (Figure 1) The patient is referred for i n i t i a l review by medical staff and i f he or she is believed to be a potentially suitable candidate, consent for donation is sought from relatives of the patient. Only "brain dead" patients are suitable for donation. A diagnosis of "brain death" is pronounced by a physician and is based on the absence of a l l brain stem reflexes. (Campbell, 1979) If consent is received, a further assessment of the patient is conducted. Usually during this period of time, the donor is maintained on a l i f e support system. Heart beat and respiratory functions as well as an adequate fluid balance are maintained to ensure the viability of the kidneys. The donor is transported to the operating room where the kidneys are surgically removed and preserved so they may be in suitable condition for implantation into the recipient. Further tissue samples are sent to a histocompatibility laboratory for the immunological typing of the donated kidney. A subsequent search for a suitable recipient is conducted. (Prottas, 1983) Ideally, the kidney procurement process should ensure that a l l suitable organs are retrievable. However, the experience of many hospitals is that not a l l available kidneys are retrieved. Therefore, failure to achieve high rates of retrieved kidneys may be due to certain elements within the procurement process. For example, to what degree of consistency is the selection criteria applied to the identified donors? Are there possible differences between individuals with the responsibility to - 14 -Figure 1 PROCUREMENT PROCESS FOR DONOR KIDNEYS Patient Admission Brain Death Identification and Evaluation of Donor Suitability X Not Suitable Consent Refused Suitable Consent Requested Consent Authorized Kidney Retrieval - 15 -identify suitable donors? What, in fact, are the barriers to successfully accessing high numbers of kidney donors for a hospital transplant program? More importantly, to what extent do hospital policies and knowledge about kidney procurement contribute to these barriers? Barriers to Procurement of Cadaveric Kidneys in Hospitals Since the procurement of kidneys occurs in hospitals, much available literature examined the institutional systems of hospitals as well as the knowledge and attitudes of professionals within these organizations. A number of writers have indicated that reluctance on the part of medical and other professional staff to ask for consent for the donation of organs is a major barrier to the procurement process. Prottas (1983, 1985) has commented that persuading health care professionals to cooperate in the process is the key task of organ procurement programs. Van Der Vliet et al. (1984) have found that physicians usually do not know how to approach the relatives of their patients in order to discuss organ donation. They are also reluctant to involve themselves in the donation process because i t is often a time consuming business which interferes with their busy hospital routines. Robinette et al. (1985) have observed that 50% of nurses, interns and residents and 45% of Intensive Care physicians have personal feelings which constitute barriers. They often feel they are "bothering" the grieving family by asking for consent. These observations have also been noted by Bart et al. (1981). - 16 -Physicians and nurses fear upsetting the grieving relatives of the brain dead patient. They feel that the aggressive procedures in which they must involve themselves in order to procure organs seem inherently disrespectful to the deceased patient and relatives. (Corlett, 1985) This has led to hospital staff not approaching patient's relatives in order to request consent for the donation of organs. 1. Absence of Defined Policy Within the Hospital Oh and Uniewski (1986) have noted that the lack of having someone assigned responsibility for supportive care of the brain dead patient prior to the removal of organs was a major barrier to the procurement of organs for transplantation. Hospital staff are often not aware of the need for organs or of the donation process. Robinette et al. (1985) have also found in their survey that 75% of the professional respondents noted a lack of co-ordination of the procurement process as well as no clear lines of responsibility for organ donation. 72% responded that they did not have an individual or team that was responsible for the co-ordination of the donation process. Of the 118 Ontario hospitals surveyed, 55% said they did not have a specific policy on organ donation. Medical professionals require clear norms about procedures to be followed when organs are retrieved and they themselves need emotional support. (Youngner et al, 1985; Corlett, 1985) Kutner (1987) notes that - 17 -without a well developed system of institutional supports, efforts to i n i t i a t e organ donation may well be avoided. 2. Lack of Knowledge About Donor Suitability The lack of knowledge about donor e l i g i b i l i t y c r i t e r i a has been shown to be an inhibiting factor to the i n i t i a t i o n of the donation process. (Van Der V l i e t , 1984; Robinette et a l . , 1985; Oh et a l . , 1986) The Medical Royal College of Great Britain (1987) conducted a survey of a l l Intensive Care Units for the Department of Health and Social Security in 1987 and found a lack of medical experience with donor selection and limited knowledge about transplantation. These physicians were not aware of the benefits of kidney transplantation. 3. Other Factors Influencing Consent and the Donation Process The donation of kidneys for transplantation i s a voluntary action. Therefore, i t i s important that public opinion favour donation and transplantation i f procurement programs are to be effective. National surveys in the United States indicate that the degree of public support for organ transplantation exceeds the degree of public support for donation. (Blendon and Altman, 1984; Manninen and Evans, 1985) Although 90% of Americans express support for transplant programs, a - 18 -smaller percentage (50-60%) indicate a willingness to donate their own organs or those of a relative. (U.S. News, 1986) Canadian polls reflected similar attitudes. (Robinette et al, 1985) A recent experience in Canada has demonstrated a more positive response to donation from the public. O'Connor et al. (1988) have reported that when the families of terminally i l l patients were approached for consent and given emotional support for their decision to donate, 100% of those asked, gave consent for the donation of a relative's organs. In a study on public opinions towards organ donation conducted by Corlett in 1985, six major reasons were identified for not donating organs. They included: a. The fear that the donor would not be dead before organs would be removed. The hastiness with which organs must be removed made respondents fear that organ retrieval would be a distraction from their death and that medical personnel would be concerned about getting their organs and not caring for them as they were dying. b. Organ removal was perceived as unnatural and respondents believed would appear mutilated or disfigured in the coffin after death. - 19 -c. The fatalist fear that i f one prepared for death, i t would occur. In other words, once you sign the donor card, death would follow soon afterward. d. The respondents felt their age was an inhibiting factor, they believed they were either too old or too young to donate their organs. e. Some members of certain orthodox religious faiths (such as Orthodox Jews) assumed that donation was prohibited because of mutilation of the body after death. f. Many non-donors stated that they had never thought of donation, therefore had not signed their donor cards. In this same study, public opinion was sought as to why people voluntarily donate their organs. The primary motive for donation, as expressed by the respondents, was to help another person live. Underlying this motivation is the belief that the status of the body after death is irrelevant. Summary The general theme discussed in the literature pertains to the possible sources of barriers to obtaining adequate numbers of suitable kidneys for transplantation. In this study, i t has been suggested that barriers to achieving this goal may li e in the procurement process used by - 20 -hospitals to access kidney donations in-house for transplantation programs. In particular, i t is suggested that two of the barriers may manifest in the form of institutional constraint in policy limitations or as knowledge constraints regarding the donation process in what is expected of professional staff. This study, therefore, investigates these barriers and the reasons for their existence. CHAPTER III METHOrJOLOGY A combination of methodologies, namely, literature review, survey and interviews were used to gather information regarding the objectives of this study. Figure 2 illustrates the methodology used. In particular, the emphasis in the data collection pertained to the knowledge and institutional barriers to the procurement of cadaveric kidneys at St. Paul's Hospital through the examination of policies and procedures. Furthermore, the methodology allowed for some comparison with the findings of a similar study in Ontario which had included policy and procedure considerations in its study design. 1. Literature Review A computer database search of the relevant, current literature enabled the establishment of an overview of the kidney procurement process as well as the definitions of the procurement process. 2. Documentary Examination First, computerized and visual screening of the medical records of a l l 753 patients who died at St. Paul's Hospital in 1987 was conducted to determine the number of patients that were not identified or selected for kidney donation in the hospital. Second, the reasons for not selecting the patients were determined from the clinical records. Finally, a set of - 22 -METHODOLOGY AND STUDY PROCEDURE 1 - Literature Review 3 - Survey of Professional Staff 4 - Interviews Data Analysis Documentary Examination - 23 -predetermined criteria (PORT, 1987) were used to screen unidentified kidney donors that were not selected for retrieval. (Appendix 3) Thus, by using the universal criteria i t was possible to establish the effect of the donor identification and selection process at the hospital and determine the numeric difference between the selected and potential donors. 3. Survey of Professional Staff The Ontario Ministry of Health Task Force Study questionnaire was used in the survey of Intensive Care nurses, physicians and administrative staff because i t focused on the knowledge and institutional barriers to the procurement of kidneys and had been used in another province. The Ontario questionnaire was modified in accordance with the study objectives and the local context. (Appendix 4) For example, questions in the Ontario Study which referred to the Metropolitan Organ Retrieval for Transplant (MORE) were substituted for questions pertaining to the Pacific Organ Retrieval for Transplantation (PORT). A pre-test of the questionnaire was conducted on a randomly selected sample of nurses, physicians and administrative staff from the study group but not included in the final survey. These individuals were believed to be representative of the population under study and included a l l of the groups of staff under study. The pre-test result showed consistency in responses in a l l categories of questions. - 24 -Bart (1981) among others has noted that 98% of a l l organ retrievals occur in the Intensive Care Units (ICU's) of hospitals. In a l l of the kidney retrievals, donor patients have respiratory and other functions maintained on a li f e support system. This technological support is possible only in Intensive Care Units. In this study, staff who work in the Intensive Care Unit of St. Paul's Hospital were surveyed as well as those who work in the Emergency Department which is the avenue for admission of critically i l l patients for Intensive Care. Staff surveyed also include physicians who provide emergency medical care for critically i l l patients. In particular, the focus of the anonymously mailed survey was a l l nurses, physicians, interns, residents, medical directors and nursing directors with the exception of nurses in the Emergency Department who usually spend l i t t l e time with the critically i l l patients before they are transferred to the Intensive Care Unit. This study population included a l l staff who provide hospital care for potential kidney donors. In order to improve the validity of survey findings, questionnaires were mailed to the entire population of staff in the relevant departments. However, the preamble to the questionnaire requested agreement to participate in the study. (Appendix 4) 4. Interviews Structured interviews were conducted with 11 randomly selected key staff members among the study population who were chosen because of their knowledge of the kidney procurement process at the hospital especially - 25 -procurement from cadavers. A l l of the interviewees were also part of the study population. The information gathered from these interviews was used to validate or clarify responses from the questionnaire as well as to provide additional information about the kidney procurement process at St. Paul's Hospital. See appendix 5 for a l i s t of structured interview questions. Prior agreement to participate in the interviews was obtained from each of the participants. (Appendix 5) 5. Data Analysis The data resulting from the questionnaires and interviews were organized and tabulated to provide descriptive information about the knowledge and institutional barriers to procurement of cadaveric kidneys in St. Paul's Hosp[ital. Percentage responses were compared for each sector of questions that was used to examine each of the study objectives. These were also compared with the results of the Ontario Task Force Study. (Robinette et al., 1985) Also, responses from interviews were categorized descriptively for each barrier identified to the procurement process. These responses also provided additional information that further clarified the research questions. - 26 -CHAPTER IV  RESULTS OF STUDY As noted in Chapter I, the primary purpose of this study was to investigate whether or not there were knowledge and institutional barriers to the procurement of transplantable kidneys at a typical hospital involved with a transplantation program. If affirmative, what were the reasons for the failure to secure adequate numbers of transplantable kidneys and what were the relationships between the barriers. Earlier in the study, documentary examination was undertaken to e l i c i t possible gaps in the kidney donor identification process. The results are as follows. Documentary Examination Using a set of established criteria (PORT, 1987; also see appendix 3), this review identified 7 patients as potential donors. There were no written reports indicating that these 7 patients had been identified or considered as potential donors prior to this study. A l l were young (between 18 and 44 years of age) and had been in hospital between one to three days. The causes of death were subarachnoid hemorrhage and multiple trauma due to injury. These causes of death were considered to be acceptable for suitable kidney donation for transplantation. - 27 -Survey and Interview A total of 84 questionnaires were sent via in-hospital mail to the study population and 42 were returned. More nurses (n=32) than physicians (n=10) responded to the questions, representing a response rate of 50% for both nurses (32 of 64 and physicians (10 of 20). Further effort to improve the response rate via notices and reminders did not yield more results. The average response rate that was obtained was later found to be due to the twelve hour shifts and heavy workload. 1. Demographic Information, Position and Experience of Respondents Table 1 illustrates demographic data such as age, sex, positions held at the hospital and the number of years of experience of a l l respondents. a. Ages of Respondents The average age of a l l respondents was 32. The age range was between 20 and 50 with the majority (45%) falling between 31 and 40 years of age. Respondents between the ages of 20 and 30 years constituted 41% of a l l respondents. Nurses tended to be younger with 47% between 20 to 30 years of age while 60% of the physicians were between 31 to 40 years of age. Bedside nurses or nurses who routinely care for patients, represented the largest number of respondents and 68% of them were between the ages of 20 and 30 years. Table l i Age, Sex, Years Experience of Respondents by Positions Held Age Total a l l Respondents NURSES PHYSICIANS ALL RESPONDENTS Head Nurses Assistant Head Nurses Bedside Nurses Nurse Supervisor/ Directors Total Nurses Residents Interns Emergency Physicians Total Physicians M M 20-30 # 12 13 38 41 13 15 41 47 2 20 2 20 2 20 2 20 4 13 17 10 31 41 31-40 * 4 12 6 6 19 19 11 13 34 40 3 30 3 30 1 10 1 10 2 20 2 20 6 60 6 60 8 11 19 1-9 26 45 41-50 « .3 10 3 10 4 4 13 13 1 10 1 10 1 1 10 10 2 2 20 20 6 6 - 14 14 Years of Experience to 00 1-2 3 30 3 30 3 30 3 30 3 1 7 2 3-5 10 10 31 31 11 11 34 34 1 10 1 10 1 10 1 10 1 11 12 2 26 28 > 5 3 3 10 10 6 19 7 8 22 25 4 4 13 13 4 16 20. 13 50 63 2 1 20 10 3 30 2 1 20 10 3 30 4 40 2 6 20 60 8 18 26 19 44 63 3 4 7 10 13 22 18 19 56 59 4. 4 13 13 4 28 32 13 87 100 3 1 4 30 10 40 3 30 3 30 2 1 3 20 10 30 8 2 10 80 20 100 12 30 42 29 71 100 H - Hale F - Female T - Total « • Number of respondents t. - Percent of category - 29 -b. Sex of Respondents Of a l l respondents, 30 or 71% were female and 12 or 29% were male. Nurse respondents were 87% female and 13% male, physician respondents were 20% female and 80% male. c. Hospital Positions of Respondents As expected, the largest group of employees in the critical care areas were bedside nurses and this group constituted the largest percentage of respondents (45%). Of a l l respondents, 76% were nurses and 24% were physicians. There was, therefore, a larger representation of nurses than of physicians in the survey responses. 2. Institutional Barriers Table 2 shows the data on responses to institutional procedures as barriers. Responses from a l l staff indicated awareness of the hospital kidney donation policy was very high at 88%. The highest level of policy awareness was among administrative nursing personnel at 92%, followed by bedside nurses at 89%. Contrary to previous studies (Medical Royal College of Great Britain, 1987), many of the physicians in this study (80%) were aware of the policy at St. Paul's Hospital. Of a l l respondents, 43% believed that the policy encouraged staff to initiate the donation process and 51% believed that the policy provided adequate information. This means that more than half of the number of respondents felt that they were not - 30 -Table 2: Institutional Polices as Barriers Aware of Policy # % Policy Encourages Initiation # of Donation % Policy Information # Adequate % Nurse Directors, Supervisors, H.N.'s, Bedside A.H.N's 12 92 11 92 N DK 1 8 6 5 50 42 1 8 1 8 Nurses Y N DK 17 2 -89 11 6 2 7 40 13 47 6 2 7 40 13 47 Physicians Y N DK 8 2 -80 20 4 2 4 40 20 40 2 20 8 - 80 All Respondents Y N DK 37 5 88 12 16 9 12 43 24 32 19 51 3 15 8 41 H.N. = Head Nurse A.H.N. - Assistant Head Nurse Y = Yes N = No DK = Don't know # = Number of respondents % = Percentage of each category - 31 -encouraged (57%) by existing policy requirements to initiate the kidney donation process in their areas of work. Almost half of a l l respondents (49%) consider existing policy on kidney donation program as inadequate. Except for administrative nursing personnel who view existing policies as adequate at 92%, both the physicians and bedside nurses consider existing policies as limited in their support for the kidney donation program. More importantly, significant percentages of a l l respondents either do not know about the adequacy of existing policies to meet the needs (41%) or feel that they are limited in encouraging professional self-initiation of the kidney donation process (32%). This also suggests that hospital staff are neither sufficiently familiar with existing policies (lack of knowledge), nor sufficiently encouraged to initiate the kidney donation process (institutional constraint). Comments of Respondents About Institutional Policy General comments (see appendix 7) made by respondents indicated that a substantial number of staff had not read the policy. This observation is supported in the results obtained from the questionnaire and the interviews. Some respondents recommended that awareness be increased through staff education about institutional policy regarding the kidney donation process. Some comments indicated that procedures related to the policy were not clear in the sense that they did not designate responsibility for - 32 -specific activities in the donation process. They stated that institutional policy should have procedures attached which outline, in chronological order, how the process should be carried out from the initiation of the donation process to the retrieval of the organs. Some respondents expressed concern about inconsistency in policy interpretation. Specifically, laboratory procedures were mentioned as a source of inconsistency because they were neither clear nor well documented. The hospital policy states that staff are to "assist patients who wish to donate either organs or tissues, and to expedite their request upon the death of the patient depending on the agreement of the next of kin". (See appendix 6) Written comments from respondents support the survey finding that institutional policy does not encourage staff to initiate the donation process. The suggestion was also made that a separate policy should be written by the hospital which indicates that i t is the intent of the organization to seek the donation of organs and which includes encouragement of staff initiation of the donation process. The St. Paul's Hospital policy recommends that staff refer to the British Columbia Ministry of Health (PORT) manual for detailed information on the procedure for the donation of kidneys. (See Appendix 8). Respondents indicated that generally they utilized the manual as a supplement to the hospital manual. One comment suggested the - 33 -simplification of the PORT manual as part of a new set of hospital procedures for the transplant program. It was also recommended that the policy include information on how to approach family to discuss the donation of organs. 3. Institutional Procedures Table 3 shows the data on survey responses to institutional procedures as barriers to the kidney donation process. Overall, the result is mixed with respect to the major categories probed. There were no conclusive indications regarding the four categories on which questions about institutional procedures were based. The lack of coordination was seen as an even split between being a major barrier 34%, a minor barrier 37% or not a barrier 29%. However, 70% of the physicians view the absence of coordination of activities as a minor barrier. The fact that over 30% of the study population perceive a lack of coordination as a major procedural barrier is cause for concern and may represent a potential loss of identifiable donor kidneys. Slightly over half (55%) of a l l respondents view the absence of firm guidelines as a minor barrier, this is noted especially among physicians (89%). The finding that 22% of bedside nurses view this particular barrier as a major barrier would mean that a substantial number of hospital - 34 -Table 3: Institutional Procedures as Barriers Nurse Directors, Supervisors, H.N.'s, Bedside A.H.N's Nurses NB MN MJ NB MN MJ Physicians NB MN MJ All Respondents NB MN MJ Lack of # 4 3 4 6 5 7 2 7 1 12 15 14 Coordination % 31 23 46 33 28 39 20 70 10 29 37 34 No firm Guidelines # 6 5 2 % 46 38 15 5 9 4 28 50 22 1 8 11 89 12 22 6 30 55 15 No clear # lines of % Responsibility 2 3 7 17 25 58 2 9 7 11 50 39 1 7 13 88 5 19 14 13 50 37 Lack of Familiarity Need for # Coordinator % # 2 6 5 % 15 46 38 8 4 62 31 1 8 2 9 7 11 50 39 16 84 1 2 5 11 3 4 3 30 40 30 7 2 1 70 20 10 7 19 15 17 46 37 31 4 4 74 10 10 H.N. = Head Nurse A.H.N. = Assistant Head Nurse NB = Not a barrier MN = Minor barrier MJ = Major barrier # = Number of respondents % = Percentage of each category - 35 -personnel in primary contact with families of sick persons do not have the institutional support for identifying donors. More than half of nursing supervisors (58%) and slightly more than one third (39%) of bedside nurses do not see clearly defined lines of responsibility in the identification process for kidney donation. Regardless, 88% of physicians view this barrier as a minor barrier, thus contributing to the importance of this particular impediment. Overall, 37% of a l l respondents consider the lack of clear lines of responsibility as a major barrier to the kidney procurement process. Finally, about one third or 37% of a l l respondents are unfamiliar with hospital or institutional procedures (Table 3). This finding is uniform for a l l categories of respondents. Physicians (30%) seem to be the most familiar with procedures whereas a slightly smaller percentage of bedside nurses (11%) are familiar with procedures as set out by the hospital. Responses were strong with respect to the need for a staff coordinator and interpreter of institutional procedures when a potential donor is available. 62% of nursing supervisors, 70% of physicians and 84% of staff nurses agree. (Table' 3) Comments of Respondents on Coordination of Procedures Most of the comments on this survey item are in favor of the role of a staff coordinator or interpreter of hospital procedures to educate staff - 36 -when a potential donor is in the hospital. (Appendix 7) Such a role would increase the efficiency of the procurement process, assist in staff education and promote consistency in the management of the donation process. Respondents stated that when many health care staff members and services are involved with patients in the Critical Care Unit, assumptions are made that someone else is attending to specific details. This results in some tasks being overlooked while others are duplicated. Since tissue viability for transplant deteriorates with the passage of time, ensuring that a l l tasks are taken care of in a timely fashion is essential. It is further suggested that a coordinator would improve the system by encouraging early identification of potential donors thus increasing the numbers of kidneys and other organs procured. Also early discussions with families would ensure a level of involvement and support for them which is essential. It was suggested that a coordinator could perform chart reviews of deceased patients who may have been missed as potential donors. In this manner, the hospital could determine i f i t was missing donors and the circumstances under which this was occurring. Thereby, subsequent efforts to procure organs could be enhanced with a resulting effectiveness in the system. Respondents envisioned the coordinator as a potential resource person who would provide education about the conditions compatible with - 37 -donorship, donor management and kidney retrieval. Overall, the coordinator would increase the visibility of the donor program. 4. Knowledge Barriers Questions about knowledge barriers pertained to the selection of potential donors, consent for donation and organ procurement and transplantation. a. Selection of Appropriate Diagnostic Categories To test the knowledge of staff regarding whom they believed to be suitable potential kidney donors, respondents were asked to select those diagnostic categories of patients which would be suitable for kidney donorship. Table 4 shows the findings about knowledge of suitable diagnostic categories for the identification of potential donors. The appropriate responses using established criteria (appendix 3) are indicated with an asterisk (*) for each diagnostic category. Nearly 33% of a l l respondents have the relevant knowledge about the suitability of primary malignancy patients as donors. However, about 90% of a l l responses and in each category of respondents correctly identified disseminated tumor patients as unsuitable donors. Nevertheless, except for nursing supervisors (54%), the majority of bedside nurses and physicians dp not know that primary brain tumor patients are suitable donors for kidneys. The appropriate responses were provided overall for systemic infections (90%), AIDS - 38 -Table 4: Knowledge Barriers to the Selection  of Potential Kidney Donors Nurse Directors, Supervisors, H.N.'s, A.H.N's Bedside Nurses Physicians Al l Respondents Y P N Y P N Y P N Y P N Primary Malignancy Except in CNS or # 6 3 3 6 6 7 2 4 3 14 13 13 Kidneys % 50 25 25* 32 32 37* 22 44 33* 35 33 33* Disseminated # _ 1 11 _ 2 15 1 _ 8 1 3 34 Malignancy % - 8 92* - 12 88* 11 - 89* 3 8 89* Primary # 7 4 2 9 6 4 3 3 3 19 13 9 Brain Tumor % 54* 31 15 47* 32 21 33* 33 33 46* 32 22 Systemic # _ 1 11 1 — 17 _ 2 7 1 3 35 Infection % — 8 92* 6 — 94* - 22 78* 3 8 90* Hypertension # — 4 8 — 7 12 1 4 4 1 15 24 % - 33* 67 — 37* 63 11 44* 44 3 38* 60 Diabetes # _ 2 10 _ 3 15 _ 6 3 _ 11 28 % - 17* 83 - 17* 85 - 67* 33 - 28* 72 Hepatitis # • — — 12 — 1 17 _ 1 8 _ 2 37 % — — 100* - 6 94* - 11 89* - 5 95* AIDS # _ - 12 _ — 18 _ — 9 _ _ 39 % - - 100* - - 100* - - 100* - - 100* Fever # 2 7 3 2 7 9 3 5 1 7 19 13 % 17 58* 25 11 39* 50 33 56* 11 18 49* 33 Hypotension # — 9 3 2 8 8 3 5 1 5 22 12 % - 75* 25 11 44* 44 33 56* 11 13 56* 31 H.N. = Head Nurse A.H.N. = Assistant Head Nurse Y = Yes P = Possibly N = No # = Number of respondents % = Percentage of each category * = The correct response to the question, eg. i t indicates i f the patient is, is not or may possibly be a suitable donor when an acceptable set of criteria are applied (appendix 3) - 39 -(100%), for hypotension (56%) and hepatitis (95%). Incorrect responses were provided for diabetes and hypertension. Only 28% of respondents knew that diabetic patients are possible kidney donors, 38% knew hypertensive patients were suitable donors. Knowledge deficiency of respondents with respect to the suitability of appropriate diagnostic categories for kidney donation is a major finding in this study especially for physicians and nurses who are in positions to identify potential donors. b. Consent for Donation Prior to the removal of cadaveric kidneys which for transplantation, consent is sought from family members of the brain dead patient. The majority of respondents (69%) reported they had experienced family's refusal to grant consent for the retrieval of kidneys and they considered the process of obtaining consent to be a major barrier to donation. (Table 5) Of a l l respondents, 61% noted that families were often not available. A l l nursing supervisors (100%) had experienced family refusal for consent. c. Experience with Donation Process Respondents were asked about prior clinical experience with donors. Overall, 76% indicated they had experience and 24% did not have prior experience. The majority of respondents in a l l categories had prior experience with the donation process. Of a l l respondents, 90% felt there was a need for more donated kidneys thus indicating considerable knowledge - 40 -Table 5: Knowledge Barriers to Obtaining Consent Nurse Directors, Supervisors, H.N.'s, A.H.N's Bedside A l l Nurses Physicians Respondents N N N N Family Refused Consent # 9 3 % 75 25 7 5 58 42 6 2 75 25 22 10 69 31 Family # 12 Unavailable % 100 4 8 33 67 5 3 63 38 21 11 61 34 H.N. = Head Nurse A.H.N. = Assistant Head Nurse Y = Yes N = No # = Number of respondents % = Percentage of each category - 41 -about the need for kidney procurement and transplantation. Table 6 illustrates the results of these two questions. 5. Other Barriers to Procurement of Kidneys for Transplantation a. Attitudes of Staff A number of other questions pertaining to staff attitudes toward the procurement of kidneys for transplantation were asked. Respondents generally expressed positive attitudes about the kidney donation process. Their responses revealed a belief in the benefits of kidney transplantation and an expression of positive feelings towards donation. (Table 7) Many respondents either strongly disagreed (41%) or disagreed (24%) that their overall experience and feelings toward the kidney donation process were negative, or that their workload did not allow them to get involved (63%). Of a l l respondents, 93% did not consider the cost of kidney transplantation to be excessive, nor that the donors tend to use needed beds (91%). A l l respondents felt the benefits of kidney transplantation are justified (100%), that transplantation of kidneys return patients to productive lives; and soothes grieving families (95%). The need for a transplant coordinator is seen as essential (74%). These findings suggest strong support for the kidney donation and transplantation program. - 42 -Table 6: Staff Knowledge About  Procurement and Transplant Nurse Directors, Supervisors, H.N.'s, A.H.N's Y N DK Bedside Nurses N DK Physicians Y N DK Al l Respondents Y N DK Clinical Donor Experience Need for Kidneys # 12 % 92 # 12 % 92 1 8 1 8 12 7 63 37 8 2 80 20 16 - 3 10 84 - 16 100 32 10 76 24 38 90 1 2 H.N. = Head Nurse A.H.N. = Assistant Head Nurse Y = Yes N = No DK = Don't know # = Number of respondents % = Percentage of each category - 43 -Table 7: Other Barriers: Personal Feelings Towaras Donation as B a r r i e r s A l l Respondents SD D N A SA Professional responsibility # 1 2 8 18 13 to initiate % 2 5 19 43 31 Coordinator would help # 7 12 7 29 19 % 3 5 3 12 45 Overall experience negative # 17 10 12 2 -% 41 24 29 5 — Workload does not permit # 7 19 7 6 2 % 17 46 17 15 5 Costs are excessive # 29 10 3 _ _ % 69 24 7 - — Problem is no coordinator # 3 9 13 11 6 % 7 21 31 26 14 Donors use needed beds # 23 15 4 _ _ % 55 36 10 - — Benefits don't justify time # 26 16 - _ — % 62 38 — — — Transplants return patient # 2 _ 4 13 23 to productive role % 5 — 10 31 55 Like more involvement # 1 6 13 19 3 % 2 14 31 45 7 Aids grieving family # - 2 7 21 12 — 5 17 50 29 Sense of loss about donor # 9 22 7 4 _ % 21 52 17 10 -Personal, ethnic or # 22 16 3 1 religious reluctance % 52 38 7 2 -Burden on donor family # 17 22 3 _ -% 40 52 7 — — Don't want to bother family # 6 8 6 14 8 14 19 14 33 19 Only positive feeling # - 2 8 21 11 % — 5 19 50 26 SD = Strongly disagree D = Disagree N = Neutral, A = Agree SA = Strongly agree # = Number of respondents % = Percentage - 44 -b. Staff Initiation of Donation Process Respondents were asked i f they would personally consider initiating the kidney donation process by consulting with another professional and/or by approaching the family i f a suitable donor was under their care. Of a l l respondents, 88% said they would consult with another professional and 45% said they would approach the family for consent to donation. A l l of the physicians (100%) indicated they would ask the family for consent to donation while only 21% of the bedside nurses replied that they would initiate the donation process by approaching the family. Table 8 presents the findings. Respondents were also asked whom they believed to be the appropriate initiating personnel. The response was overwhelmingly in favour of the physician as initiator, (93%). However, since respondents were asked to identify a l l appropriate personnel, a large number of respondents also chose assistant head nurses, staff nurses and the unit medical director as appropriate initiators of the the donation process. (Table 9) The results appear to indicate a belief that most professionals are suitable initiators of the donation process. c. Professional Groups as Barriers Respondents were asked i f they believed that some professional hierarchies such as unit nurses, head nurses or interns/residents were believed to be barriers to the kidney donation process. Although a few - 45 -Table 8: Initiation of Donation Process Nurse Directors, Supervisors, H.N.'s, Bedside A.H.N's Nurses All Physicians Respondents Y P N Y P N Y P N Y P N Initiate by Consulting Other 112 1 -Professional % 92 8 -16 3 -84 16 -9 1 90 10 37 5 -88 12 -Initiate by Approaching # 5 4 3 Family % 42 33 25 4 7 8 9 -21 37 42 100 -18 11 11 45 28 28 H.N. = Head Nurse A.H.N. = Assistant Head Nurse Y = Yes P = Possibly N = No # = Number of respondents % = Percentage of each category - 46 -Table 9: Appropriate Initiators of Donation Process Nurse Directors, Supervisors, H.N.'s, Bedside A l l A.H.N's Nurses Physicians Respondents Staff Nurses # 5 % 38 Nurse # 4 Supervisor % 31 Assistant # 6 Head Nurse % 46 Head Nurse # 6 % 46 Physician # 13 % 100 Unit Medical # 8 Director % 62 11 3 19 58 30 45 6 3 13 32 30 31 12 4 22 63 40 52 7 4 17 37 40 40 18 8 39 95 80 93 14 8 30 74 80 71 H.N. = Head Nurse A.H.N. = Assistant Head Nurse # = Number of respondents % = Percentage of each category - 47 -respondents view different professional hierarchies such as renal unit staff (5%), family physicians (18%), interns and residents (13%) and head nurses (5%), as major barriers to the kidney procurement process, nevertheless, the majority of a l l respondents view professional hierarchies either as no barrier at a l l or as minor barriers to the procurement of kidneys for transplantation. (Table 10) A key finding is the perception by the majority of a l l respondents (68%) that relatives of patients constitute major barriers or at least minor barriers (24%) to the kidney procurement process. Comments About Other Barriers to Kidney Procurement Responses from interviews indicated reluctance to approach families for consent to donation. A number of comments revealed the reasons for this reluctance. Foremost was the lack of knowledge about how to initiate the approach. Respondents felt inadequately trained to carry out this task. They felt i t was important to know the family and to have had an opportunity to develop rapport with them prior to the time when i t was necessary to ask for the consent. They preferred to "ease into the subject" while the time of death approached. This unfortunately, was not always possible, especially i f death occurred quickly. Table 10: - 48 -Individuals as Barriers to Procurement Nurse Directors, Supervisors, H.N.'s, A.H.N's Bedside Nurses NB MN MJ NB MN MJ Physicians NB MN MJ All Respondents NB MN MJ Relatives # of Patient % 1 2 10 8 15 77 1 6 6 11 33 61 1 2 7 10 20 70 3 7 10 28 24 68 Unit Nurses 9 4 69 31 15 3 83 17 7 3 70 30 31 10 76 24 Head Nurses # % 9 2 2 69 15 15 16 2 89 11 7 3 70 30 32 7 78 17 2 5 Assistant # 9 4 - 15 3 - 6 4 - 30 11 -Head Nurses % 69 31 - 83 17 - 60 40 - 73 27 Interns/ # 7 1 4 10 7 1 8 2 - 25 10 5 Residents % 58 8 33 56 39 6 80 20 - 63 25 13 Renal Unit # Staff % 10 1 2 35 23 38 15 3 -47 41 12 8 2 80 20 33 6 80 15 2 5 Family # Physician % Administrator # % 5 3 5 35 23 38 7 4 2 54 31 15 8 7 2 47 41 12 12 4 71 24 1 6 8 2 80 20 8 2 80 20 21 12 7 53 30 18 27 10 68 25 3 8 H.N. - Head Nurse A.H.N. = Assistant Head Nurse NB = Not a barrier MN = Minor barrier MJ = Major barrier # = Number of respondents % = Percentage of each category - 49 -There was an overall concern about staff's inability to deal with the death of the patient. This is seen at times, by the reluctance to have "no resuscitation" orders written on patient's charts even when there is l i t t l e chance for recovery. Furthermore, some respondents stated " i t would be too traumatic for the family to ask them for consent to donation" or "they have suffered enough, I could not put them through any more grief". Bedside nurses, in particular, who were both young and inexperienced felt they had not come to terms with the issue of their own mortality so could not cope with i t in others. It was felt this led to losses of potential donors because families were not asked for the donation. A strong recommendation emerged from interviews following the discussion about reluctance to ask for donation. It was suggested that professional staff required training to provide them with the skills to comfortably approach families and discuss the issues around the death of the patient and the possible donation of kidneys. The psychological benefits to be gained from donation could be stressed. The importance of the need for emotional support for families was recognized as well. It was recommended that social workers and the pastoral care department personnel become more involved in this aspect of family care. - 50 -6. Data from Current and Previous Studies In Tables 11 and 12, comparable data on institutional and knowledge barriers from this study and the Ontario Task Force Study are presented. The comparison of these two studies must be viewed with caution since the Ontario study had a much larger study population spanning several regions and hospitals. Nevertheless, the comparison is made for the purpose of identifying any commonalities that may be generalized to British Columbia in areas where similar information has been sought. In both studies, the lack of. coordination for the kidney donation process is viewed a minor barrier about evenly (St. Paul's Hospital 37%, Ontario Task Force 32%). (Table 11) The importance of this barrier factor appears to increase as the size of a study population increases (53% of respondents in the Ontario Study whereas 34% in the St. Paul's Hospital study consider lack of coordination of activities a major barrier). On the contrary, the importance of firm guidelines appear to increase as the study population reduces (see Table 11). Both studies appear to place different emphasis on the merit of clear lines of responsibility. Whereas 50% of the respondents in this study view this factor as a minor barrier, 52% of respondents in the Ontario study consider i t a major impediment, thus emphasizing the significance of the factor. The findings regarding familiarity with institutional policies, procedures and the donation process are mixed with each study having minor emphasis on the relative importance of this factor. - 51 -Table 11: Institutional Procedures as Barriers: A Comparison of St. Paul's Hospital  and Ontario Task Force Study No Barrier Minor Barrier Major Barrier Lack of # Coordination % SPH | OTF SPH | OTF SPH | OTF 12 29 282 15 15 633 37 32 14 1026 34 53 No firm Guidelines # % 12 30 352 18 22 653 55 33 6 15 952 49 No clear # 5 311 19 620 14 1028 lines of % 13 16 50 32 37 52 Responsibility Lack of Familiarity 7 17 226 11 19 689 46 35 15 1067 37 54 SPH = St. Paul's Hospital OTF = Ontario Task Force # = Number of respondents % = Percentage of each category - 52 -Table 12: Knowledge Barriers to the Selection of Potential Kidney Donors: A Comparison of St. Paul's Hospital  and Ontario Task Force Study Yes Possibly No SPH | OTF SPH | | OTF SPH | | OTF Primary Malignancy Except in CNS or Kidneys # % 14 35 81 4 13 33 715 39 13 33* 1096 58* Disseminated Malignancy # % 1 3 10 1 3 8 123 7 34 89* 1672 92* Primary Brain Tumor # % 19 46* 348 18* 13 32 1080 56 9 22 491 26 Systemic Infection # % 1 2 14 1 3 8 226 12 35 90* 1676 87* Hypertension # % 1 2 34 2 15 38* 980 51* 24 60 908 47. Diabetes # % - 33 2 11 28* 679 36* 28 72 1189 62 Hepatitis # % -14 1 2 5 128 7 37 95* 1778 92* AIDS # % - 17 1 - 47 2 39 100* 1857 97* Fever # % 7 18 67 3 19 49* 1269 67* 13 33 567 30 Hypotensive # % 5 13 123 6 22 56* 1370 72* 12 31 420 22 SPH = St. Paul's Hospital OTF = Ontario Task Force # = Number of respondents % = Percentage of each category * = The correct response to the question, eg. i t indicates i f the patient is, is not or may possibly be a suitable donor when an acceptable set of criteria are applied (appendix 3) - 53 -In Table 12, the appropriate responses to diagnostic selection criteria for potential kidney donation are marked by an asterisk. The selection criteria chosen by respondents in both studies are similar in many diagnostic categories, for example in disseminated malignancy (89% and 87%), diabetes (28% and 36%), hepatitis (95% and 92%) and AIDS (100% and 97%). However in both studies respondents were incorrect in their belief that diabetic and hypertensive patients were not possible donors. The results appear to indicate that both groups of respondents had some uncertainty in their knowledge of donor eligibility criteria. - 54 -CHAPTER V  DISCUSSION AND SUMMARY In chapter I, the primary purpose of this study, as stated, was to determine what barriers exist to the procurement of cadaveric kidneys for transplantation and to explore the reasons for the existence of these barriers. Institutional and knowledge barriers were the focus of the investigation using St. Paul's Hospital as the center for the study. The findings of the study indicate that (a) sufficient numbers of potential donor kidneys are not identified and procured at the hospital, (b) barriers to the procurement process exist at the institutional and knowledge levels, (c) the attitudes of staff indicate strong support for kidney donation and transplantation and, (d) that a l l professional groups are seen as suitable initiators of the donation process and that no professional group are barriers to-this process. In the documentary examination, for example, 7 potential kidney donors were identified. A l l of the potential donors were suitable as donors since they f i t within the established criteria for donorship of cadaveric kidneys, (appendix 3) however, they were not procured. Institutional Barriers Institutional barriers did not encourage staff initiation of the donation process. Policies were found to be inconsistent, unclear and - 55 -non-formalized. Staff lacked awareness of existing hospital policy. The inadequate number of clearly defined, specific, understandable procedures is also seen as a barrier. Respondents felt the procedures did not define clear lines of responsibility and this inhibited the process of kidney donation. It appeared that although St. Paul's Hospital had a policy on kidney donation, procedures were not well detailed, for example, the delegation of responsibility. Respondents stated that the PORT manual, as a source of reference, was unclear and i t would be useful to have the hospital's and the PORT manual combined and re-written to provide detailed procedures. This revised set of procedures should encourage initiation of the donation process and define clear lines of responsibility for a l l staff involved in the care of brain dead patients who are potential kidney donors. A coordinator could assist staff to interpret hospital policy and procedure and promote consistency in the management of the donation process. Respondents indicated that since St. Paul's Hospital was a teaching hospital, i t had many staff members attending to the patient's needs. However, at times, some of the details in the donation process were overlooked because staff believed someone else was responsible for the task. A coordinator would ensure that a l l tasks were completed in a timely fashion and therefore, increase the efficiency of the procurement system. Also, a coordinator could perform chart reviews to determine the numbers - 56 -of donors whose kidneys were not procured, thereby, providing education to staff about how to identify suitable donors of cadaveric kidneys. Knowledge Barriers The deficiency of staff knowledge with respect to the selection of appropriate diagnostic categories of patients as suitable donors was seen as a barrier to the procurement of cadaveric kidneys. Physicians and nurses were uncertain about the selection of certain categories of patients such as diabetics for donorship of kidneys for transplantation. Respondents also experienced family member's refusal to grant consent for the donation of kidneys. Staff indicated they lacked knowledge regarding how to select donors and how to the approach families to ask for consent for removal of the kidneys. Since procurement of kidneys occurred so infrequently at St. Paul's Hospital (only 3 were obtained in 1987, see page 3), staff lacked experience with the selection of patients who were suitable for donorship. Continuing education is required by staff to enable them to improve their knowledge about the selection of suitable kidney donors. Also, this program of education could train staff on how to approach families for consent to the donation. Respondents viewed a coordinator as a resource person who could provide education about the conditions compatible with donorship, donor management and kidney retrieval. The coordinator could also improve the vis i b i l i t y of the donor program and this would serve as a - 57 -reminder to staff to screen patients for potential donorship of cadaveric kidneys. Staff Attitudes to Kidney Donation Staff attitudes to kidney donation and transplantation were positive. They expressed the belief that kidney transplantation provided benefits to the recipient patient and returned them to a productive l i f e . Staff also thought that donation of kidneys provided psychological benefit to the family of the brain dead patient because a patient was benefiting from their loss. Comments from respondents indicated they believed this benefit should be discussed with families when staff approached them to ask for consent to the donation of the kidneys. When staff education is provided, this point would be important to include in the education process with staff. Staff as Initiators or Barriers to the Donation Process Respondents were asked whom they thought was the appropriate person to initiate the donation process with a patient and their family. Although a l l respondents felt the physician was the best person to initiate this process, they also indicated that any professional involved in the care of the patient would be appropriate to initiate the donation process. This appears to suggest that no institutional barriers exist which would prohibit various staff members from initiating the procurement of kidneys for transplantation. - 58 -Professional groups were not seen as barriers to the kidney donation process at St. Paul's Hospital. This finding suggests that a l l professional groups including nurses, physicians and administrators were thought to be supportive of the staff's efforts to procure kidneys for transplantation. Comparison of St. Paul's Hospital and Ontario Task Force Study The results from these two studies must be viewed with caution because the two study populations are different. The Ontario Task Force study had a larger population which spanned several regions and hospitals. The St. Paul's Hospital study was smaller and investigated the barriers to procurement of cadaveric kidneys at one typical hospital with a kidney transplantation program. The study questionnaire used in the St. Paul's Hospital was a modified version of the questionnaire used in the Ontario study. A comparison of the two studies is made for the purpose of generalization to British Columbia in areas where similar information was sought. The results from both studies indicated the existence of institutional and knowledge barriers which presented impediments to the procurement of kidneys for transplantation. St. Paul's Hospital and the Ontario study found procedural barriers such as a lack of coordination, no clear lines of responsibility and unfamiliarity with procedures to be either minor or major barriers. Both studies also found that staff lacked - 59 -knowledge about suitable patient selection for donorship of cadaveric kidneys. Recommendations Since both institutional and knowledge barriers were found in this study, two major recommendations are suggested. 1. Staff require information about the content of existing policies and clarification of procedures regarding kidney donation. Procedures could be reviewed and re-written to include specific, clear, consistent guidelines for staff to follow in the event of a potential kidney donation. These procedures could include a statement which indicates the hospital encourages the identification of potential donors and allows a l l staff members to initiate the process of donation. Procedures may also include information about how staff could seek consent for donation from families. 2. Education of staff regarding selection of suitable donors could improve the procurement rate at the hospital. A program of continuing education of staff may be undertaken by a coordinator who could increase knowledge about donor selection, how to seek consent for donation and management of potential donors and their families. The coordinator could also improve the visibility of the procurement program and encourage staff to screen patients for - 60 -potential donorship. Chart reviews conducted by this staff member could identify missed donors and assist the hospital to become more efficient in its procurement practices. Limitations of the Study The St. Paul's Hospital study was conducted to provide an in-depth examination of the barriers to procurement of cadaveric kidneys for transplantation. There was no concurrent comparison made with similar hospitals although some comparison of findings was done with the Ontario Task Force study. This limits the extent to which one can generalize this study. Suggestions for Further Study A study, which examines the influence of this study's results in a situation where a procurement coordinator exists is suggested. The purpose of such an investigation would be to determine i f the existence of a coordinator results in a higher procurement rate for the hospital. Another study could examine the utility of the results of this study in situations in which there are clearly defined institutional policies and sufficient procurement knowledge. - 61 -BIBLIOGRAPHY Bart, K.J., Macon, E.J., Whitier, F.C., Baldwin, R.J. & Blount, J.H. Cadaveric kidneys for transplantation. Transplantation, 1981, 31 (5), 379-382. Bart, K.J., Macon, E.J., Humphries, A.L., Baldwin, R.J., Fitch, T., Pope, R.S., Rich, M.J., Langford, D., Teutsch, S.M. & Blount, J.H. Increasing the supply of cadaveric kidneys for transplantation. Transplantation, 1981, 31 (5), 383-387. Blendon R.J. & Altman, D.E. Public attitudes about health care costs: a lesson in national schizophrenia. New England Journal of Medicine, 1984, 313, 65-82. Campbell, J. Kidney Transplantation. Health Services Research Center, University of Missouri, Columbia, 1973. Cardella, M.J., de Veber, G.A., Hollenberg, C, Marshall, W.J.S., Seaver, R., Robinette, M.A., Lindberg, M.C. & Stiller, CR. Donor identification. Transplantation Proceedings. 1985, 17 (6), Supplement 3, 35-45. Corlett, S. Professional and system barriers to organ donation. Transplantation Proceedings. 1985, 17 (6), Supplement 3, 11-123. Corlett, S. Public attitudes toward human organ donation. Transplantation  Proceedings, 1985, 17 (6), Supplement 3, 103-111. Conference of Medical Royal Colleges. Report of the Working Party on the  Supply of Donor Organs. Chadwyck-Healey, United Kingdom, 1987. Gilmore, A. Procuring donor organs: firm but friendly encouragement required. Canadian Medical Association Journal. April 1986, 134, 932-937. Grant, D., Stiller, C, Duff, J., Mckenzie, N., Wall, W., Keown, P., Ghent, C., Kostuk, W., Kutt, J., Chin, J., Hayman, P., Sharpe, J., Sheperd, R., Grace, M., Mai, F., Stewart, D. & Bloah, M. Experience of a Canadian multi-organ transplant service. Canadian  Medical Association Journal. August 1986, 135, 197-203. Health and Welfare, Canada. Ways and means to enhance human organ and  tissue procurement and exchange. Health Services and Promotion Branch, Ottawa, Canada, 1984. - 62 -Kidney Foundation of Canada. Canadian renal failure register. Report, 1986. Kutner, N.G. Issues in the application of high cost medical technology: the case of organ transplantation. Journal of Health and Social  Behaviour, March 1987, 28, 25-36. Manninen, D.L. & Evans, R.W. Public attitudes and behaviour regarding organ donation. Journal of the American Medical Association. 1985, 253. 3111-3115. Ministry of Health. Pacific organ retrieval for transplantation. Manual, Victoria, B.C, 1987. O'Connor, J.A., Kivell, M., Riddell, R.H. & Venturelli, J. The development of an organ donation protocol from the perspective of the donor family and donor hospital. Transplantation Proceedings, 1988, 20 (1), Supplement 1, 928-929. Oh, H.K. & Uniewski, M.H. Enhancing organ recovery by initiation of required request within a major medical center. Transplantation  Proceedings. 1986, 18 (3), 426-428. Prottas, J.M. Obtaining replacement: the organizational framework of organ procurement. Journal of Health, Politics, Policy and Law. 1983, 8 (2), 235-250. Prottas, J.M. Organ procurement in Europe and the United States. Milbank Memorial Fund/Health and Society. , 1985, 63 (1), 94-127. Robinette, M.A., Marshall, W.J.S., Arbus, G.S., Beal, K., Bennett, R.C, Brady, W.J., Harris, D., Rimstead, D., Morrin, P., Seaver, R. & Stiller, CR. The donation process. Transplantation Proceedings. 1985, 17 (6), Supplement 3, 45-67. Robinette, M.A. & Stiller, CR. Summary of task force findings. Transplantation Proceedings, 1985, 17 (6), Supplement 3, 9-13. U.S. News. Gallup organ survey results reported. Contemporary Dialysis  and Nephrology, 1986, 7, 15-16. Van Der Vliet, J.A., Cohen, B., Vroemen, J.P., Ruers, J.M. & Koostra, G. Successful reorganization of organ procurement in the Netherlands. Transplantation Proceedings, 1984, 16 (1), 191-192. Waltzer, W.C. Procurement of cadaveric kidneys for transplantation. Annals of Internal Medicine. 1983, 98 (4), 536-539. - 63 -Youngner, S.J., Allen, M., Bartlett, E.T., Cascorbi, H.P., Hau, T., Jackson, D.L., Mahowald, M.B. & Martin, B.J. Psychosocial and ethical implications of organ retrieval. New England Journal of  Medicine. 1985, 313, 321-324. - 64 -Appendix 1(a) New Patients by Age Group at Registration, Canada and Provinces, 1986 (Age-specific Rate per Million Population) P r o v i n c e N e w P a t i e n t s T o t a l ' A g e G r o u p 0 -14 15-44 4 5 - 6 4 6 5 - 7 4 75 + C A N A D A : 1986 66.5 7.2 39.5 126.8 238.2 138.4 1985* 60.8 6.6 38.5 123.9 195.3 109.4 1984' 57.8 8.8 38.9 115.9 182.2 82 .6 1983* 52.9 4.9 39.0 105.3 156.6 74.2 1982* 50.7 5.7 33.8 108.1 150.1 81.7 1981* 49.1 5.5 31.7 106.1 151.1 84 .7 N F L O 98 .5 - 63 8 1 79.1 533 .2 276.8 P.E.I. 3 N S . 75 .0 9 .2 72 .4 139 .0 165 .6 21.1 N B 64.8 6 2 23 2 9 6 . 4 4 2 1 . 4 159 9 Q U E . 52 2 5 2 30 .2 106 .2 191 .4 82 3 O N T . 73.3 7.5 39.1 140 .0 2 6 8 8 158 9 M A N . 102.5 12 7 70 .4 193 .7 278 . 3 200 .6 S A S K 70.3 8 1 65 . 8 83 . 7 185 3 1885 A L T A . 55.8 8 .9 32 .7 122 .7 2 4 8 . 9 133 7 B.C. 64 .5 8.5 37 8 121 .2 181 .0 156.7 ' P a t i e n t s a r e c o u n t e d by p r o v i n c e o f t r e a t m e n t a t y e a r e n d . 1 D a t a f o r 1981 t o 1985 a r e r e v i s e d . 3 S t a t i s t i c s f o r P r i n c e E d w a r d I s l a nd a r e i n c l u d e d in N o v a S c o t i a Source: Canadian Renal Failure Register, 1986, p.65 - 65 -Appendix Kb) NUMBER, RATE AND AGE OF NEW PATIENTS New Patients by Age Group at Start of Treatment. Canada and Provinces. December 31,1986 (Number) P r o v i n c e N e w P a t i e n t s T o t a l ' A g e G r o u p 0 -14 15 -44 4 5 - 6 4 6 5 - 7 4 75 + C A N A D A : 1986 1.683 39 488 618 393 145 1985 J 1.543 36 478 602 314 113 19842 1.452 48 478 559 285 82 1983* 1.316 27 . 475 502 241 71 1982* 1.249 31 407 509 227 75 1981 J 1.189 30 373 490 221 75 N F L O 5 6 - 18 16 17 5 P.E.I.3 N.S. 73 3 33 24 12 1 N.8 . 4 8 - 10 13 2 0 5 Q U E . 341 7 9 8 138 78 2 0 O N T . 6 6 7 14 172 2 5 6 163 62 M A N . 108 3 35 38 21 1 1 S A S K . 70 2 28 16 14 10 A I T A 132 5 41 48 28 10 B.C. 188 5 53 69 40 21 1 P a t i e n t s a r e c o u n t e d by p r o v i n c e o f t r e a t m e n t a t y e a r e n d . 2 D a t a f o r 1981 t o 1 9 8 5 a r e r e v i s e d . J S ta t i s t i c s f o r P r i n c e E d w a r d I s l and a r e i n c l u d e d in N o v a S c o t i a . Source: Canadian Renal Failure Register, 1986, p.63 - 66 -Appendix 2(a) Summary of Treatment Parameters for All Patients on December 31, 1986, Canada and Provinces (Rate per Million Population) P r o v i n c e T o t a l P a t i e n t s R e p o r t e d A l i v e w i t h F u n c t i o n i n g T r a n s p l a n t O n D ia l y s i s H a e m o -d ia l y s i s P e r i t o n e a l D i a l y s i s ' C A N A D A : 1986 341.2 164.9 176.3 115.5 60 .8 1985 306.6 138.1 168.5 109.2 59.3 1984 287.3 126.0 161.3 104.9 56 .4 1983 273.8 118.1 155.7 103.0 52.7 1982 2 242.4 98.3 144.1 94.1 50.0 1 9 8 1 J 236.4 97.6 138.7 96.3 42.4 N F L O 3 360 .7 140 8 219 . 9 160.1 59.8 P .E . I . 3 . 4 NS.2 309 0 187 .0 122 .0 7 1 0 5 1 0 N B . ' 336 .8 183.2 153 6 9 4 4 59.2 Q U E . 326 7 163 .3 163.3 122 .0 41 .3 O N T . 379 4 189.1 190 3 113.4 76.9 M A N . 428 . 0 2 1 8 2 209 .8 169 .3 40 .5 S A S K 278 .3 137 .7 140.7 85 .2 55 .5 A L T A . 300 .5 1 55 1 145.4 105.2 40 .2 B.C. 294 .4 87 .1 2 07 . 4 121 .7 85 .7 ' P e r i t o n e a l d i a l y s i s i n c l u d e s C A P D . IPD. C C P D a n d p e r i t o n e a l d i a l y s i s u s ed in c o m b i n a t i o n w i t h h a e m o d i a l y s i s . 2 D a t a fo r 1981 a n d 1982 a r e r e v i s e d 3 T h e m a j o r i t y o f t r a n s p l a n t s f o r t h e A t l a n t i c P r o v i n c e s ( N e w f o u n d l a n d . P r i n c e E d w a r d I s l and . N o v a S c o t i a a n d N e w B r u n s w i c k ) a r e p e r f o r m e d i n N o v a S c o t i a E x c l u d i n g P r i n c e E d w a r d I s land , t r a n s p l a n t e d p a t i e n t s a r e s h o w n by p r o v i n c e o f r e s i d e n c e 4 S ta t i s t i c s f o r P r i n c e E d w a r d I s l and a r e i n c l u d e d in N o v a S c o t i a Source: Canadian Renal Failure Register, 1986, p.35 - 67 -Appendix 2(b) ALL TREATMENTS IN CANADA AND THE PROVINCES Summary of Treatment Parameters for All Patients on December 31.1986, Canada and Provinces (Number) P r o v i n c e T o t a l P a t i e n t s R e p o r t e d A l i v e w i t h F u n c t i o n i n g T r a n s p l a n t O n D i a l y s i s H a e m o -d i a l y s i s P e r i t o n e a l D i a l y s i s ' C A N A D A : 1986 8.636 4,174 4,462 2,924 1.538 1985 7,774 3,502 4,272 2,768 1.504 1984 7.219 3,166 4,053 2.635 1,418 1983 6,816 2.940 3,876 2.564 1,312 1982 5.971 2,421 3.550 2,318 1,232 1981 5.719 2,362 3.3S7 2.331 1,026 N F L D . 2 2 0 5 80 125 91 34 P . E . I . " N .S . ' 3 0 9 187 122 71 51 N B . 2 2 3 9 130 109 67 42 Q U E 2 .134 1.067 1.067 7 9 7 270 O N T 3 .453 1.721 1.732 1.032 700 M A N . 4 5 5 2 3 2 223 180 43 S A S K . 281 139 142 86 56 A L T A . 711 3 6 7 3 44 2 4 9 95 B C . 8 4 9 251 5 9 8 351 247 ' P e r i t o n e a l d i a l y s i s i n c l u d e s C A P O . IPD, C C P D a n d p e r i t o n e a l d i a l y s i s u s e d in c o m b i n a t i o n w i t h h a e m o d i a l y s i s . ' T h e m a i o r i t y o< t r a n s p l a n t s f o r t h e A t l a n t i c P r o v i n c e s ( N e w f o u n d l a n d , P r i n c e E d w a r d I s l and . N o v a S c o t i a a n d N e w B r u n s w i c k ) a r e p e r f o r m e d in N o v a S c o t i a E x c l u d i n g P r i n c e E d w a r d I s l and , t r a n s p l a n t e d p a t i e n t s a r e s h o w n b y p r o v i n c e o f r e s i d e n c e 3 S ta t i s t i c s f o r P r i n c e E d w a r d I s l and a r e i n c l u d e d in N o v a S c o t i a . Source: Canadian Renal Failure Register, 1986, p.34 - 68 -Appendix 3 CRITERIA FOR KIDNEY DONOR SELECTION Donors must be free from the following unsatisfactory factors: Pre-existing diseases of the kidney Malignancies other than primary brain tumors Systemic bacterial, fungal, or viral infections (donors with treated infections may be suitable) Prolonged ischemia due to prolonged or profound hypotension or asystole Positive hepatitis B or HIV virus tests - 70 -Appendix 4(b) BARRIERS TO KIDNEY ORGAN DONATION AT ST. PAUL'S HOSPITAL QUESTIONNAIRE Septembe JC 1 9 8 8 - 71 -BARRIERS TO KIDNEY ORGAN DONATION AT ST. PAUL'S HOSPITAL QUESTIONNAIRE CODE This study is being conducted by Bonnie Gabel (telephone 683-1741). The purpose of the study is to investigate the barriers to the donation of cadaveric kidneys for transplant. The potential benefits of the study are the improvement of the mechanisms to procure kidneys for transplant and thereby increase the number of kidneys available. The procedure involves the completion of this questionnaire, placing i t in the envelope provided, sealing i t and mailing i t to the investigator via in-hospital mail. Your participation is voluntary; you may chose not to become involved i f you so wish. Completion of the questionnaire will take about 15 minutes. If you participate, i t is assumed that your consent is given. A l l data will be kept confidential, your identity will not be known. Responses will be coded by number only. Please check the appropriate response. Demographic Characteristics 1. Please check one of each of the following: Age: under 20 20 - 30 31 - 40 41 - 50 over 51 Sex: female male Position and Experience 2. What is your position in this hospital? (a) R.N. (ICU staff) (b) R.N. (assistant head nurse) (c) R.N. (head nurse) (d) R.N. other (specify) (e) Physician (ICU staff) (f) Physician (resident) (g) Physician (intern) (h) Physician (neurologist) (i) Physician (neurosurgeon) (j) Physician other (specify - 72 -3. How many years of clinical experience have you had? years Institutional Barriers 4(a) Are you aware that St. Paul's Hospital has a policy regarding kidney donation? yes no 4(b) If you are aware of the existing kidney donation policy, do you think i t encourages nursing staff or physicians to initiate • the donation process? yes no I don't know Please briefly give your comments 4(c) If you are aware of the existing kidney donation policy, does i t provide adequate information about the procedures to be followed in the event of a potential kidney donation? yes no I don't know Do you have any comments about the policy? What, if anything, should be included in the policy or procedures which presently is not included? 5. Do you believe there is a need for a staff person to co-ordinate the process of kidney donation in order to insure that a l l necessary steps are taken? yes no I don' t know Briefly, please explain - 73 -6. Using the scale shown below, from your point of view, rate the following statements in terms of their being potential barriers to the process of kidney donation. Please circle one of the following numbers for each statement. 1 - not a barrier 2 - minor barrier 3 - major barrier (a) lack of coordination of donation process 1 2 3 (b) no firm guidelines 1 2 3 (c) no clear lines of responsibility 1 2 3 (d) time demands of the donation process 1 2 3 (e) attitudes of other professionals 1 2 3 (f) questions of legal responsibility 1 2 3 (g) added financial burden for the unit or hospital 1 2 3 (h) lack of familiarity with process •1 2 3 (i) personal feelings towards organ retrieval and donation 1 2 3 Please, briefly l i s t any other barriers which you are aware of 7. If you have had experience with kidney donors, have you encountered any of the following d i f f i c u l t i e s ? Please check yes or no for each response. yes no (a) family refused consent (b) family unavailable or unknown (c) no one to c a l l for advice (d) lack of support from hospital administration (e) lack of support from medical personnel (f) lack of support from nursing personnel (g) problems with the coroner (h) other (specify) Please, b r i e f l y explain the d i f f i c u l t y you encountered - 74 -Using the scale shown below, rate a l l of the following individuals in terms of their being- potential barriers to the kidney organ donation process. Please c i r c l e the appropriate number for each individual or group. not a barrier 2 - minor barrier 3 - major barrier (a) relatives of patient 1 2 3 (b) unit nurses 1 2 3 (c) head nurses 1 2 3 (d) assistant head nurses 1 2 3 (e) interns/residents 1 2 3 (f) renal unit staff 1 2 3 (g) family physicians 1 2 3 (h) administrators 1 2 3 Please l i s t other individuals who are potential barriers to the donation of kidneys Knowledge Barriers 9(a) Would you personally consider i n i t i a t i n g the kidney donation process i f a suitable donor was under your care? yes possibly no < i) By consulting with another health care professional ( i i ) By approaching the family Please explain your answer 9(b) Who do you think would be the appropriate i n i t i a t i n g personnel? Please check any of those whom you think are appropriate. staff nurses nurse supervisor assistant head nurse head nurse physician unit medical director other (specify) - 75 -If you believed you had a patient who was a potential kidney donor in your care, and wished to consult with someone, whom would you call? Please check any of those whom you think are appropriate. (a) assistant head nurse (b) head nurse (c) nursing supervisor (d) physician (ICU Director) (e) physician (ICU resident) (f) physician (ICU intern) (g) physician (director of renal unit) (h) nephrologist (i) urologist (j) PORT (Pacific Organ Retrieval for Transplantation) (k) other (specify Who, in St Paul's Hospital, could help you in the management of a potential kidney donor and his/her family? Please check a l l answers which are appropriate. (a) nephrologist/nephrology team (b) urologist (c) PORT (d) social worker (e) chaplain/pastoral care (f) no one (g) other (specify) Please indicate which of the following types of patients you personally would define as potential suitable kidney donors, given that a l l patients were certified brain dead: yes possibly no (a) with a primary malignancy except in the central nervous system or kidneys (b) with disseminated malignancy (c) with primary brain tumour (d) with systemic infection (e) with hypertension (f) with diabetes (g) with hepatitis (h) with AIDS (i) with fever (j) hypotensive Have you ever had any clinical experience with a potential kidney donor? - 76 -Other 14. Using the scale below, rate your personal feelings toward the following statements. Circle one of the four numbers for each statement. 1-strongly disagree, 2-disagree, 3-neutral, 4-agree, 5-strongly agree (a) I feel I have a professional responsibility to i n i t i a t e kidney donation for those identified as kidney donors 1 2 3 4 5 (b) An organ donation coordinator would help greatly in i n i t i a t i n g the kidney donation process into my current duties 1 2 3 4 5 (c) My overall experience with kidney donation has been negative 1 2 3 4 5 (d) My current workload does not permit any active involvement with the kidney donation process 1 2 3 4 5 (e) Kidney donation should not be advocated because of the excessive costs involved in caring for the donor 1 2 3 4 5 (f) I feel a major problem with kidney donation is the absence of an in-hospital person or team to co-ordinate the donation process 1 2 3 . 4 5 (g) Kidney donors u t i l i z e beds that could be used for more needy patients 1 2 3 4 5 (h) The benefits of kidney transplantation do not justify the time involved in in i t i a t i n g and carrying out the donor practice 1 2 3 4 5 (i) Kidney transplant rehabilitates patients to a purposeful and productive role in society 1 2 3 4 5 -ll-xs. Do you personally believe there is a need Cor more kidney donors? yes no I don' t know • Please comment 16.' Using the scale below, rate your personal feelings towards the following statements. Please circle one of the four numbers for each statement. 1-strongly disagree, 2-disagree, 3-neutral, 4-agree, 5-strongly agree (a) I would like to be • more involved in initiating the kidney donation process 1 2 3 4 5 (b) I feel that the kidney donation process aids the grieving family by providing a sense of contibution to another person's li f e 1 2 3 4 5 (c) When considering kidney donation, I usually have a sense of loss or defeat about the donor and this inhibits the donation process 1 2 3 4 5 (d) I do not feel that I should actively initiate kidney retrieval due to personal, ethical or religious considerations 1 2 3 4 5 (e) The donation process is an unwarranted additional burden for the donor's family • 1 2 3 4 5 (f) I feel the idea of bothering a grieving family with requests for kidney donation may be a major block in initiating the organ donation process 1 2 3 4 5 (g) I have nothing but positive feelings toward kidney donation 1 2 3 4 5 17. Do you have any additional feelings or comments about kidney donation? - 79 -Appendix 5(b)  Interview Questions Title: Barriers to the Donation of Kidneys for Transplant at St. Paul's  Hospital 1. In your opinion, does St. Paul's Hospital obtain a sufficient number of kidneys for transplantation? Please explain. 2. If not, what do you consider to be the barriers or obstacles to the procurement of a sufficient number of kidneys? Please explain. 3. Do you think some of the problems are due to the way in which the hospital has organized its procurement system? Please explain your answer. 4. What do you think needs to be done to improve the procurement system? a. from the hospital institutional viewpoint? b. from the point of view of individual staff? Please explain. 5. In your opinion, do you think that the need for kidney donation is well known among: a. your colleagues b. staff in your department c. staff in the hospital 6. What do you think needs to be done to improve knowledge level? Please explain. 7. How do you think the kidney donation process at St. Paul's Hospital can be improved? Please explain. 8. What other suggestions can you offer for improving access to usable, donated kidneys at St. Paul's Hospital? Appendix 6 - 80 -. Paul's Hospital POLICY STATEMENT Ca tegory : L E G A L I S S U E S Number : 0 5 - 5 0 0 - 7 0 Title: O R G A N A N D T I S S U E D O N A T I O N I t i s the p o l i c y of the h o s p i t a l to a s s i s t p a t i e n t s who wish to donate e i t h e r organs or t i s s u e s , and to e x p e d i t e t h e i r request upon the death of the p a t i e n t depending upon the agreement of the next of k i n . E f f e c t i v e d a t e : Revised juiy 28, 1988 A p p r o v e d b y : U n i t s p r i m a r i l y a f f e c t e d : Nursing Department, M e d i c a l S t a f f , A d m i t t i n g Department Source: St. Paul's Hospital Policy Manual, 1988 - 81 -PROCEDURE A. PROCEDURE FOR MAINTAINING A MEDICAL RECORD FOR DESIGNATED ORGAN DONORS. For p a t i e n t s at S t . Paul's who have been d e c l a r e d dead, and are designated Organ Donors, the f o l l o w i n g a p p l i e s : 1. Two p h y s i c i a n s must d e c l a r e that the p a t i e n t i s b r a i n dead and record on the progress notes: 1.1 Time of d e c l a r a t i o n of b r a i n death, 1.2 C l i n i c a l Assessment, 1. 3 S i g n a t u r e . 2. Admitting w i l l be n o t i f i e d of the: 2.1 Time of d e c l a r a t i o n of b r a i n death/and 2.2 That the p a t i e n t i s now to be designated as "Deceased - Organ Donor". 3. Nurs i ng w i l l : 3.1 Record on the Nurses Notes that the p a t i e n t has d i e d , and i s now an organ donor. 3.2 Continue to monitor and r e c o r d as the p a t i e n t i s supported and u n t i l the p a t i e n t i s t r a n s f e r r e d to the Operating Room. 3.3 Nursing w i l l r e c o r d the time of t r a n s f e r to the Operating Room. 4. In the Operating Room a l l c h a r t forms w i l l continue to be stamped with the o r i g i n a l addressograph p l a t e , but Nursing w i l l w r i t e above the stamp "Deceased - Organ Donor". T h i s w i l l i n c l u d e the A n a e s t h e t i s t ' s Record. 5. A l l r e q u i s i t i o n s , such as f o r blood work, w i l l be stamped with the addressograph p l a t e as o u t l i n e d i n paragraph four ( 4 ) . B. PROCEDURE FOR EYE DONOR NOTIFICATION. The process f o r eye donations i n o r d e r to supply human donor t i s s u e for c o r n e a l t r a n s p l a n t s , s c l e r a l g r a f t s and medical re s e a r c h i s as f o l l o w s : 1. The h o s p i t a l supports the Eye Bank of B.C. Eye Donor Program, and w i l l undertake to n o t i f y the Eye Bank of B.C. of every death o c c u r r i n g at S t . Paul's H o s p i t a l t h a t meet the f o l l o w i n g g u i d e l i n e s : 1.1 Age between 1 - 7 0 y e a r s . 1.2 Within s i x hours of d e a t h . 1.3 Taking i n t o account the l i s t of c o n t r a i n d i c a t i o n s , o u t l i n e d i n the Nursing P o l i c y and Information Manual 05-500-70 Source: St. Paul's Hospital Policy Manual, 1988 - 82 -PROCEDURE 2 . The p h y s i c i a n i s r e s p o n s i b l e to c o n t a c t the next of k i n and to o b t a i n consent f o r eye donations by a signed donor c a r d , a consent form c a l l e d "Eye Bank Consent Form" -NF078 a v a i l a b l e i n the Admitting Department, or a documented telephone c a l l . 3. Consent f o r eye donation may be given to the p h y s i c i a n by: 3.1 The p a t i e n t who d e c l a r e s b e f o r e two (2) witnesses t h a t they wish to donate t h e i r eyes a f t e r death/or 3.2 The p a t i e n t ' s spouse/or i f not r e a d i l y a v a i l a b l e , 3.3 Any one of the p a t i e n t ' s c h i l d r e n / o r i f not r e a d i l y a v a i l a b l e , 3.4 Any one of the p a t i e n t ' s p a r e n t s / o r i f not r e a d i l y a v a i l a b l e , 3.5 Any one of the p a t i e n t ' s s i s t e r s or b r o t h e r s , 3.6 Any o t h e r next of k i n / o r an, 3.7 E x e c u t o r / e x e c u t r i x . 4. The Nursing Department s t a f f i s r e s p o n s i b l e to: 4.1 N o t i f y the A d m i t t i n g Department and, o r the A d m i n i s t r a t i v e S u p e r v i s o r , as with a l l deaths. 4.2 P r o v i d e the f o l l o w i n g i n f o r m a t i o n to e i t h e r the A d m i t t i n g Department or the A d m i n i s t r a t i v e S u p e r v i s o r i f the p a t i e n t i s a p o t e n t i a l donor, meeting the g u i d e l i n e s i n paragraph one ( 1 ) . 4.2.1 P a t i e n t name. 4.2.2 Date of B i r t h . 4.2.3 Admitting D i a g n o s i s / P r e s e n t D i a g n o s i s . 4.2.4 Time of death. 4.2.5 A t t e n d i n g P h y s i c i a n . 4.2.6 Nursing Unit name. 5. The A d m i t t i n g C l e r k , Monday to F r i d a y , 0800 - 1600 hours, and the A d m i n i s t r a t i v e S u p e r v i s o r on e v e n i n g s , nights and weekends w i l l n o t i f y the Eye Bank of B.C. about a p o t e n t i a l donor. The telephone number i s 875-45G7. 6. The Eye Bank t e c h n i c i a n i s on an answering s e r v i c e and w i l l always r e t u r n the c a l l . At that time they w i l l a l s o c o n t a c t the p h y s i c i a n f o r any a d d i t i o n a l i n f o r m a t i o n and request that a consent be o b t a i n e d . 05-500-70 Source: St. Paul's Hospital Policy Manual, 1988 - 83 -PROCEDURE C. PROCEDURE FOR DONATION OF KIDNEYS FOR TRANSPLANT. 1. When any p a t i e n t or family member i n d i c a t e s that the p a t i e n t wishes to donate a kidney at death, the D i r e c t o r of the Renal U n i t , or h i s d e l e g a t e i s n o t i f i e d . 2. If the a n t i c i p a t e d donation proves to be a c c e p t a b l e the D i r e c t o r of the Renal U n i t , or d e l e g a t e , w i l l c o n t a c t the D i r e c t o r of I.C.U., and the e s t a b l i s h e d p r o t o c o l implemented. 3. D e t a i l e d i n f o r m a t i o n about the donation of kidneys f o r t r a n s p l a n t i s found i n the PORT Manual ( P a c i f i c Organ R e t r i e v a l f o r T r a n s p l a n t a t i o n ) , l o c a t e d on 5 West, I.C.U., Emergency, the O.R., and the Nursing S u p e r v i s o r s O f f i c e . 4. The ORGAN OR TISSUE DONATION Consent Form - Form MR-037 l o c a t e d i n I.C.U. i s to be used. D. PROCEDURE FOR DONATING BODY TO MEDICAL SCHOOL AT U.B.C. 1. If a p a t i e n t i s i n t e r e s t e d i n donating t h e i r body to the Medical S c h o o l , the Anatomy Department, F a c u l t y of Medicine, U n i v e r s i t y of B r i t i s h Columbia should be c o n t a c t e d . 2. A s e t of a p p r o p r i a t e forms and a l e t t e r o u t l i n i n g the procedure to be followed at the time of death are sent to the p r o s p e c t i v e donor. 05-500-70 Source: St. Paul's Hospital Policy Manual, 1988 - 84 -Appendix 7 Comments of Respondents on Institutional and  Knowledge Barriers to the Kidney Donation Process Comments on Institutional Barriers "I know St. Paul's has a policy but I have never read i t . " (Stated by 5 bedside nurses) "I know the policy exists but I do not know the nursing role in the procurement of kidneys." "Since i t comes into effect only when there i s the c r i s i s of death, i t requires an anchor woman/man to in i t i a t e the process. Continuing education for the public and the staff i s necessary." "The present policy states i t i s up to the hospital to assist the donation process when the family indicates they wish to donate. I wonder i f the hospital should have a separate policy which states i t i s the intent of the organization to seek donations of organs." "The policy leaves the i n i t i a t i v e for donation on the family. Medicine and nursing are passive and have non-specific roles within St. Paul's hospital policy regarding donation." "The steps are clear and the support for staff involved are outlined f u l l y . " "I think i t depends on the individual's interest in the subject. If a person i s enthusiastic about donation, they w i l l pursue i t , i f not, having a donation policy i s not l i k e l y to make any difference." "The present policy encourages staff to i n i t i a t e the donation process only i f they are self motivated." "It i s considerably easier to i n i t i a t e donation now that PORT i s operational." "If you are aware of the possibility of a donor, you can i n i t i a t e some of the requirements and maybe even suggest i t to those family members involved." "The present policy could refer staff to additional information re: tissue typing, maintenance of organs, etc." - 85 -"The procedure relates to the legalities of procurement." "The procedures need a staff person to coordinate them." "I think they could be organized and written from a chronological order of the donation process stating who is responsible for what (from initiation to donation)." "I don't know what information could make the procedure easier." "The information is adequate except for lab procedures. They can vary according to lab personnel because there is a change in policy that is not immediately communicated with an update placed in the manuals." "I found there was too much detail in the PORT manual and this could have been listed better as to what was expected." "The criteria to establish brain death are very specific." "An in-house coordinator would increase visibility and raise awareness of the procurement effort and the transplant program." "Nursing could be encouraged by the coordinator to initiate the procurement process." "Fewer potential donors would be missed because a regular chart review could be made and potential donors could be identified sooner. Charts could be flagged for review." "Education of a l l staff about procurement and the donation process could be the role of the coordinator." "The coordinator could educate staff about the policy, formulate new policy when needed and ensure that i t was followed in the event of a donation." "The coordinator would provide a consistent approach to procurement. He/she would provide support for family and staff." "A coordinator could provide continuing education for staff so as to develop a sense of ethics about donation so i t isn't a shock but instead a well thought decision." "I believe PORT is funded to provide coordination." "As shifts change, the situation changes and patients get missed. A staff person could liaise with a l l staff to identify only the potential donors. The supervisors would deal only with the unusual/unexpected cases." - 86 -"I don't think it would help because a coordinator would not be available on all shifts. Nursing supervisors are most helpful because they are always available." "Because there are so few donations, we have little experience with the necessary steps. Some things get missed so a coordinator would help." "Kidneys are a valuable harvest and it is important that the procedure run smoothly. There is a need for one person to oversee the whole donation process and to maximize the efficiency of transplant." Comments on Knowledge Barriers "There is no emphasis on how to go about getting consent from the family." "There is a lack of education of physicians as to who is a suitable donor and who is available to advise and assist physicians when they think they have a suitable donor but are uncertain. Sometimes, physicians are uncertain about the use of certain drugs eg. dopamine. They do not know how much is allowable before the patient becomes ineligible as a kidney donor." "Identification of donors is a problem, especially the older patient. Patients up to 70 years of age are suitable as donors. "I wonder if we are really missing suitable donors. We have many elderly and AIDS patients who die in this hospital. There are few trauma patients seen here. Our patient population may have few suitable donors." "Not knowing how to ask for consent is a barrier. Lack of experience with asking family members makes it difficult; the comfort level varies from one individual to another." "Lack of preparedness or knowledge about donation is a barrier." "Professionals and the public are not comfortable with death and the donation of organs. This is evident when staff have to face the issue of making a patient "no Code" or writing a "do not resuscitate" orders and have difficulty doing so." "There is reluctance to ask for consent, staff take refuge in the belief that it would be distasteful to ask for donation but this is a 'cop out'. They really do not know how to ask for consent so avoid doing it." "If the issue of consent is not broached early enough with family, staff feel uneasy about addressing it in the dying phase of the patient. There are guilt feelings around intruding in the family's grieving." - 8 7 -"The family have suffered enough, I can't put them through more." "Staff should realize they are depriving families of the opportunity to make some good come out of a loss; there is some benefit to another living human being by donating a relatives kidneys. This is the approach that staff should take when asking for consent for donation." "Identifying donors and obtaining consent must be done in a timely fashion. This is difficult and requires teamwork. Staff do not want to be criticized for going after organs too fast." Appendix 8 - 88 -STEPS T O T A K E FOR ORGAN DONATION These steps outline a simple and effective process for you to follow to smoothly manage an organ donation. The steps are ' described in detail in this manual. IDENTIFY A POTENTIAL DONOR 1 REFERRAL CALL TO P.O.R.T. (604) 875-4665 1-800-663-6189 1 APPROACH THE FAMILY FOR CONSENT 1 MAINTAIN THE DONOR / OBTAIN CONSENT FOR DONOR TRANSFER 1 TRANSFER TO REGIONAL TRANSPLANT CENTRE 1 DECLARE BRAIN DEATH 1 MAINTAIN DONOR 1 MOBILIZE RETRIEVAL TEAM REMAIN IN DONOR CENTRE i . DECLARE BRAIN DEATH 1 MAINTAIN DONOR / \ CALL P.O.R.T. MOBILIZE RETRIEVAL DONOR CENTRE TEAM RETRIEVAL TEAM "ORGAN REMOVAL'^ ''' ORGAN STORAGE 1 DISTRIBUTION BY P.O.R.T. Source: Pacific Organ Retrieval for Transplantation, 1987 - 89 -^ p O R T I O R G A N DONOR A G E CRITERIA 1 Guidelines are established for organ donors according to the age of the donor. Listed below are suggested chronological age limits for donors of the respective organs. Chronological age is less important than the quality of the organ. No one should he discounted as an organ/tissue donor because of age. Perfusable Organs Chronological age limits are less important than the quality of the organ. i Kidney donors up to 70 years old i i Heart donors up to 35 years old in males up to 40^cars old in females ! | Liver donors up to 55 years old " Suggested age limits. Lung donors up to 50 years old " . Pancreas donors up to 40 years old Heart/lung donors up to 40 years old Heart valves up to 60 years old In these situations size, weight and height of the donor are much more significant than age. .—, — - • —• — Source: Pacific Organ Retrieval for Transplantation, 1987 - 90 -A C C E P T A B L E ORGAN DONOR R E Q U I R E M E N T S The following pages list the criteria for donation of each type of organ. Kidney and Pancreas Donors An acceptable kidney and pancreatic donor demonstrates the following satisfactory factors: • Blood pressure • Urine output • Electrolytes, scrum creatinine, urea, amylase • Blood sugar • Urinalysis • Past history The presence of renal problems docs not immediately rule out the donor. Oliguria and elevated scrum creatinine may be prc-rcnal in origin due to the therapeutic dehydration and/or loss of vasalregulatory function associated with brainstem damage which temporarily impairs the renal perfusion. Impaired kidney function due to prc-rcnal factors does not disqualify a donor if early treatment with aggressive hydration results in a prolude renal perfusion as demonstrated by declining urea and creatinine (see section on the Management of the Multiple Organ Donor). Acceptable kidney and pancreas donors. Source: Pacific Organ Retrieval for Transplantation, 1987 - 91 -C H E C K L I S T O F BASIC INFORMATION FOR DONOR EVALUATION The following pages contain a checklist to evaluate donors. Kidney Donor [ I Age Kidney Donor [ ] Sex [ ] Race [ ] Cause of death [ ] Past medical history - surgical procedures, hypertension, etc. [ ] Present medical history [ ] Blood type ( ] Creatinine [ ] Urea [ ] Electrolytes [ ] Blood pressure - periods of hypertension/hypotension [ ] Urinalysis [ ] Hourly urine [ ] 24-hour urine output [ ] Temperature [ ] Medications [ ] Blood cultures [ ] Urine cultures Source: Pacific Organ Retrieval for Transplantation, 1987 - 92 TISSUE TYPING SAMPLES Tissue typing identifies patients who are compatible for transplantation with the donor. Begin As Soon As Possible It is imperative that tissue typing begin as soon as possible, preferably when it is recognized that recovery of the patient is very unlikely and the prognosis of brain death is imminent. Bloods should be sent prior to removal. The tissue typing lab will ensure that 11 TLV-ll l or 1,11V and hepatitis testing is initiated. Required bloods include: . 50 cc of clotted blood • 50 cc of heparinized blood Send bloods in a container marked as follows: Tissue Typing Laboratory Vancouver General Hospital Emergency Department 855 West 12th Avenue Vancouver, British Columbia V5Z 1M9 Notify the P.O.R.T. transplant co-ordinator on call at (604) 875-4665 that bloods arc being shipped. Special Arrangements The transplant co-ordinator will make arrangements if hypothermic renal perfusion (in situ flushing) is required. Begin t issue typing a s s o o n as poss ib le . S e n d b lood samples . Arrangements for hypothermic renal perfusion. Source: Pacific Organ Retrieval for Transplantation, 1987 - 93 -m SATISFYING BRAIN D E A T H CRITERIA Potential cadaveric donor organs must satisfy certain criteria before they are deemed suitable for donation. ! Brain Death Etiology ! Cadaveric organ donors arc patients who have suffered j irreversible brain death of known etiology such as: | . Head injuries (eg. motor vehicle accident, gunshot i wound) • Intracerebral hemorrhage (ruptured berry aneurysm) • Hyposia due to resuscitated cardiac arrest, drug overdose and drowning • Primary brain tumour (non-metastasizing) • Homicide or suicide Parameters of Brain Death A potential brain dead donor meets the following parameters: • Performs effective cardiovascular function • Is apneic and supported by a respirator or ventilator • Exhibits no brain stem reflexes < Does not respond to painful stimuli • Makes no attempt at spontaneous respiration Causes of brain death. Brain death parameters. Source: Pacific Organ Retrieval for Transplantation, 1987 Determination of Brain Death Determination of brain death should be made according to the individual hospital's policy. See Appendix I for Guidelines for the Diagnosis of Brain Death published by the Canadian Congress of Neurological Sciences, and Appendix II for Criteria for the Determination of Death, a working paper published by the Law Reform Commission of Canada. Guidelines for Completing the Death Certificate Guidelines may vary from hospital to hospital according to local definitions and procedures. The clinical diagnosis of brain death according to the Human Tissue Gift Act requires the expressed opinion of two physicians independent of the transplant or recipient team. As a result, this process is normally completed in the Intensive Care Unit at each institution. Death, as determined, should be recorded when the second physician makes a declaration of brain death in the history section of the patient's medical record. The ICU staff should prepare and complete the death certificate and any internal hospital forms including the consent for organ donation and autopsy permission forms. Refer to Append ix I: Guidel ines for the Diagnos is of Brain Death. Refer to Append ix II Criteria for the Determination of Death. Guidel ines for complet ing the death certificate may vary. Source: Pacific Organ Retrieval for Transplantation, 1987 - 95 -SUGGESTED CRITERIA FOR T H E DETERMINATION O F BRAIN D E A T H Brain death is essentially a clinical diagnosis and there are no absolute criteria for its establishment. The Human Tissue Gift Act requires the expressed opinion of two independent physicians regarding cerebral death (see Appendix III). Minimum clinical criteria for pronouncing brain death include: • Pupils dilated and fixed to light • No corneal reflexes • Lack of response to upper and lower airways stimulation • No ocular responses to head movements or cold calorics • Absence of spontaneous respirations Although brain death can be established reliably by clinical criteria alone, special tests can be used to support and, in some instances, supplement the clinical diagnosis. The electroencephalogram (EEG) assesses cerebral cortical function and is an ancillary test performed when medically warranted. Minimum brain death criteria. Source: Pacific Organ Retrieval for Transplantation, 1987 - 96 -C O N S E N T FOR O R G A N DONATION i Consent for organ donation is required from the attending physician, next of kin, and the coroner. Conditions For Consent 1 j Once the attending physician agrees that the patient fulfills ! the criteria of brain death, consent for organ donation should be obtained from the next of kin. Sec Appendix V for a sample consent form for organ donation. The following three conditions should be met when obtaining consent: 1) Agreement of the attending physician 2) Notification and consent of the coroner even if this is not a coroner's case, as a matter of courtesy 3) Verbal consent from the next of kin, followed by written consent Attending Physician Obtain agreement on the pronouncement of brain death from the attending physician. Coroner The coroner must be notified immediately and must agree to the donation. Documentation of notification and the medical record. P .O.R.T. offers the service of notifying the coroner. Next of Kin Although a driver's license or document form when signed is considered a valid and legal document permitting organ donation, the next of kin arc A L W A Y S approached. If they decline the option of organ donation, no pressures arc exerted to convince them otherwise. O r g a n donation approval by the: Attending physic ian C o r o n e r Next of kin Attending physic ian must agree. Notify coroner immediately to obtain consent . A lways a p p r o a c h the next o l kin. Source: Pacific Organ Retrieval for Transplantation, 1987 - 97 -The next of kin should be approached in the following order of priority: 1) Spouse of any age 2) Child who has attained tlie age of majority 3) Either parent 4) Brother or sister 5) Any other relative who has attained the age of majority 6) The person lawfully in possession of the body (docs not include the administrative head of the hospital, public trustee or those entrusted with the disposal of the body) Next of kin priority list. If the person first in line is not readily available, the next person in line can be approached. Restrictions in Consent Authorization The following limitations arc placed on those emposvered to give consent: • Actual knowledge, on the part of the person consenting, that the deceased would have objected invalidates the consent. • If the person of the same or closer relationship to the deceased in the list of priority would have objected, the consent is invalid. • No consent is valid if an inquest might be required by the coroner, unless the coroner specifically agrees that organ donation may proceed. W h e n consent is invalid. S o u r c e : P a c i f i c O rgan R e t r i e v a l f o r T r a n s p l a n t a t i o n , 1987 APPROACHING T H E FAMILY FOR CONSENT Provided that the attending physician agrees, the next of kin should be approached regarding organ donation by a person who is convinced of the value of organ donation. I ! The Family's Time of Grief The request for organs is a delicate issue. Because of the emotional strain felt by the family, they arc often not responsive to logic and may find the request for organ donation a crude invasion in their time of grief. However, for many families, the thought that their loss could save another life is often enough to influence them to seriously consider or approve of organ donation. Although in most cases it will be the physician who initiates the discussion of organ donation, other professionals who have developed a rapport with the family may be approached to speak with the next of kin (eg. hospital or family chaplain or intensive care unit nurses). Suggested Guidelines The following are suggested guidelines for anyone discussing organ donation with the family: • Be sure that the family understands and accepts the concept of brain death before discussing organ donation . Meet with the family in a private and quiet setting • Speak to the family in easy to understand non-medical language • Offer the family an opportunity to donate, and convey to them the acceptance of any decision • Avoid manipulation and coercion The opportunity to s a v e a life. Profess ionals who are c lose to the family. H o w to a p p r o a c h the family Source: Pacific Organ Retrieval for Transplantation, 1987 - 99 -P.O.R.T. Will Help j A member from P.O.R.T. can be asked to participate in j this process regardless of the time or location. A member | from P.O.R.T. will be available to approach the next of kin j if requested by the attending physician responsible for the j patient. | Ask P.O.R.T. to help. Source: Pacific Organ Retrieval for Transplantation, 1987 - 100 -KifllHHIHKslHHHHE GUIDELINES FOR O R G A N DONOR M A I N T E N A N C E STANDING ORDERS i The following lists the guidelines for organ donor maintenance. Temperature Temperature must be maintained at 37°C « Use a warming blanket prn, warmed in solution, humidifcr and temperature up to 38° Temperature 37°C. Fluid Status Central line for CVP monitoring is essential to predict fluid status CVP central line. Systolic Blood Pressure Systolic blood pressure must be maintained above 100 mmtlG • Vasopressors to be administered to maintain blood pressure • Ncosynephrine is used for heart lung and heart transplants Systolic BP above 100 mmHG. • Dopamine in other cases Renal Function Maintain urine output 100 cc/hour Urine output 100 cc/hr. Sources Pacific Organ Retrieval for Transplantation, 1987 - 101 -Replace urinary outpul cc for cc with 0.9 NaCl with 15 mcq. KCL/litre until the electrolytes results return to normal. Then adjust as necessary: 5% D5W if the sodium is greater than 150 0.9 sodium chloride if the sodium is less than 150 If diabetes insipidus occurs and urine output greater than 250 cc/hour, continue to replace urine losses cc per cc, and administer DDAVP 4 micrograms IV or Start Aqueous Pitrcssin drip (after first checking with the liver team) at 50 units/500 cc D5VV at 50 cc/hour. Then titrate drip to maintain urine output at approximately 100 cc/hour Maintenance IV Order: Treatment to return electrolytes. If diabetes insipidus occurs. Blood Work Blood work to be sent STAT: . ABGs . CBC, diff . Urea, Creatinine . BS . HBsAg . Total and direct Bilirubin . SGOT, SGPT, CPK, LDH, Alk/Phos • PT and PTT with controls • Cross and Type - 4 units . Ca, Mg, P0 4 • Amylase . Drug Screen (1 lavender, 1 red top) Specimens Specimens to be sent: . Sputum for CNS and gram stain . Urine for CNS and gram stain • Others as requested by M.D. Prepare and send blood work to P.O.R.T. Prepare and send specimens to P.O.R.T. Source: Pacific Organ Retrieval for Transplantation, 1987 - 102 -Consults j Arrange the following consults: Call in consulting ; . Neurosurgery physicians. ! • Urology i • Cardiology (only for heart or heart/lung donors) i ! • Others as requested by M.D. ! | Monitor qlh ! i Additional tasks. ! Monitor the following qlh: I ' . CVP | j . Vitals ! | . Ventilation j j • Ncuro signs ; i j • Intake/Output j j Blood work q 2 h j Blood work to be sent q2h: i j . ABGs i • Lytes ! . CBC I Additional Procedures 12 lead EKG Stat portable chest | Weigh patient I Other procedures requested: Source: Pacific Organ Retrieval for Transplantation, 1987 - 103 -ORGAN RETRIEVAL i P.O.R.T. provides detailed procedures and instructions as well as surgical, medical, and nursing teams for organ removal. Facility Arrangements If organ removal is to be undertaken by the donor hospital staff, the retrieval surgeon should make appropriate arrangements with the operating room. Detailed procedures and instructions for the care, perfusion and preparation of the organs for transport can be obtained from the transplant co-ordinator. For hospitals without the surgical personnel or facilities available, the transplant co-ordinator can make arrangements for a surgical, medical, and/or nursing team to travel to the donor hospital to perform renal and non-renal organ retrieval. When a P.O.R.T. team travels for the purpose of organ retrieval, it is necessary to provide the retrieval team with temporary operating room privileges. Such privileges should be made according to individual hospital policy, usually by notifying the hospital administrator in charge, as well as the hospital's Chief of Surgery. Participation in Organ Procurement When a team visits the donor hospital, local surgeons will be given the opportunity to participate in the organ procurement. The British Columbian College has sanctioned the extension of privileges to non-British Columbian registered surgeons, physicians, nurses, and technicians for the purpose of organ donation provided that it is under the auspices of the local institution - its administration, Chief of Surgeon, and Physician-in-Chief. M a k e operating room arrangements. S e n d in a P.O.R.T. team. Local medical personnel are we lcome to participate. Source: Pacific Organ Retrieval for Transplantation, 1987 

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