Perspectives on organ and tissue donation among Chinese Canadians.
Donation of organs, tissues, etc.
Donation of organs, tissues, etc. (Economic aspects)
Donation of organs, tissues, etc. (Surveys)
Chinese Canadians (Health aspects)
Chinese Canadians (Surveys)
|Publication:||Name: CANNT Journal Publisher: Canadian Association of Nephrology Nurses & Technologists Audience: Trade Format: Magazine/Journal Subject: Health care industry Copyright: COPYRIGHT 2011 Canadian Association of Nephrology Nurses & Technologists ISSN: 1498-5136|
|Issue:||Date: Oct-Dec, 2011 Source Volume: 21 Source Issue: 4|
|Geographic:||Geographic Scope: Canada Geographic Code: 1CANA Canada|
Organ and tissue transplantation offers great potential for improving quality of and reducing health care costs associated with end-stage organ failure. However, substantial and persistent shortages of organs and tissues for transplantation exist in Canada and there is a growing gap between those on transplant waiting lists and the organ available for transplantation. Every Canadian should have the opportunity to consider organ and tissue donation and transplantation in a culturally sensitive and respectful manner. During consultation with the Chinese Canadian community in Toronto, it was found that a clear understanding of the attitudes and values of Chinese Canadians regarding organ and tissue donation could assist health professionals in making ethnocul-turally sensitive requests for donation to members of this community.
Key words: organ donation, transplantation, Chinese Canadian, ethnocultural beliefs, culture, diversity
Background to the consultation
Organ and tissue transplantation offers great potential for improving quality of life and reducing health care costs associated with end-stage organ failure. However, substantial and persistent shortages of organs and tissues for transplantation exist in Canada and there is a growing gap between those on transplant waiting lists and the organs available for transplantation. The gap between the need and the supply for transplantation may be exacerbated within diverse ethnocultural communities, partly because of difficulties in finding compatible organ donors and partly because of an insufficient understanding of ethnocultural perspectives about donation.
Disproportionately high numbers of Chinese people are on dialysis in Canada (Yoshida et al., 1999), and there is some evidence that there may be reluctance within Chinese communities to donate organs for transplantation (Boey, 2001; Lam & McCullough, 2000; Wu, 2008). Therefore, transplantation might be less accessible and successful because of issues relating to genetic compatibility and difficulties obtaining a close tissue match in people of different ethnocultural communities (Plawecki, Freiberg, & Plawecki, 1989).
An understanding of the perspectives of Chinese people living in Canada regarding donation and transplantation could greatly assist health professionals in raising awareness and in making ethnoculturally sensitive requests for donation to members of these communities. To this end, the Canadian Council for Donation and Transplantation (CCDT), using a community engagement process, undertook consultations with Chinese Canadians living in Toronto, Ontario, to explore their perspectives on organ and tissue donation and transplantation (see Endnotes 1, 2). In this paper, we discuss the consultation process and outcomes, and provide recommendations for nurses to improve practice related to the organ and tissue donation process.
The values that guided the consultation were developed by the CCDT Diverse Communities Steering Committee (see Endnote 3) and included appreciation of diversity, collaboration, integrity, and excellence (see Table 1). The consultation objectives were to identify beliefs and views about donation, to identify processes for engaging ethnocultural communities on the topic of donation and transplantation, and to consider partnerships between ethnocultural groups and their local donation and transplantation program, in this case, Trillium Gift of Life Network (TGLN). The consultative process was based on the principles of respect for the heterogeneity of populations, the individuality of participants, the role of local community representatives, flexibility, and relationships and trust (see Table 2). In keeping with these principles, the consultation planning meetings included representatives of Toronto's Chinese Canadian communities, TGLN and CCDT. Members of the Chinese communities were involved in the consultation process and they helped to make connections with participants and other appropriate organizations. Planning committee members provided ongoing advice on ethnoculturally sensitive practices, and reviewed the consultation process and tools for feedback. Consultation materials for the discussion groups and surveys were reviewed by three ethicists on the CCDT Diverse Communities Steering Committee for ethical considerations, sensitivity of approach, and rigorous application of the consultation principles and values.
The consultation involved a number of people from Chinese Canadian communities, living in Toronto, who participated in a number of ways. We used discussion groups and written surveys to explore the attitudes and beliefs about donation and transplantation. Discussion groups were held with 44 people. Two sessions were organized and hosted by the Yee Hong Centre for Geriatric Care, and the third, by the Chinese Cultural Centre of Greater Toronto. A survey was also developed to collect information from other individuals in Toronto's Chinese Canadian community. The survey was available in English, simplified Chinese, and traditional Chinese characters. It was distributed through contacts, word-of-mouth and to the following groups:
* meeting of the Scarborough Hospital Chinese Outreach Committee
* participants in recreation programs at the Chinese Cultural Centre of Greater Toronto
* staff, patients and family members at the Scarborough Hospital Hemodialysis Unit
* members of the Chinese Renal Association
* youth group meeting at a Chinese Baptist Church.
In total, 110 surveys were completed.
A survey was also conducted with family physicians who cared for members of the Chinese community in Toronto. In the survey, we asked the physicians about their views on donation and transplantation, as physicians, rather than as individuals. Questions focused on three themes:
* the physicians' roles in advising their patients
* Toronto's Chinese Canadian community
* future opportunities involving their roles in organ and tissue donation.
The survey was distributed at a meeting of members of the Journal Club of Chinatown Physicians and the Uptown Doctors Association. Two presentations on donation and transplantation were made at the meeting, followed by questions. A total of 22 surveys were completed.
Overall, the age range of participants in the consultation was from the mid-twenties to 92 years with the majority born in Hong Kong, and residing in Canada for 20 years or more. A majority of the participants had post high school education.
Most participants believed that few members of their communities had reflected on donation and transplantation. They noted the lack of information and education about the issue and most participants said they knew little about donation. Relatively few participants personally knew someone who had received a transplant or been an organ donor. This was emphasized by one participant who said:
Participants stressed the importance of educational campaigns in the Chinese communities to promote organ donation. People believed that lack of information was a key reason that individuals did not donate. Religious organizations and physicians were mentioned in the discussions as possibly playing a role in helping educate people about donation. Participants gave examples of promotion elsewhere. For instance, one person said:
Some people believed they had enough information to make a decision about being a donor. Of the remaining participants, the type of information they required fell into three categories: information about the medical procedure involved, including the operation itself and the impact on one's health; information about the donation process; and information relating to the state of the body, in the case of deceased donation, after the organ(s) have been removed. Printed materials and television were the preferred methods of receiving information about donation. Participants indicated the need for education in the workplace concerning living donation. One individual said:
Views on donation and transplantation
Most people agreed that they would not accept a donation if they were over the age of 70; that is, it was better that the organ go to someone younger. A strong majority indicated a willingness to accept an organ transplant if they required one.
They noted that the transplant would extend and improve the quality of their life. Dying, and therefore leaving their family, was another important reason for accepting an organ.
Some concerns were expressed about receiving or donating an organ. Some feared the procedure itself, while others questioned the success of transplantation or the appropriateness of the recipient of the donation. For example, one person said:
Many showed concern for the health of the living donor and they were not willing to risk the health of others to receive an organ. One individual said:
Most indicated that it would be fine for a family member to accept a donation from someone who was not of Chinese descent. Comments reflected the view that it was the compatibility of the donated organ and not the ethnicity of the donor that mattered.
Among those participants who were willing to donate an organ, a few reported that they would place some restrictions on their donation. Some mentioned particular body parts they did not want donated, while the majority who put limits on donation did not want their bodies to be used for experimentation or medical research. About half indicated that they would be willing to make a living donation.
A strongly recurring theme was the significance and value of donating money and time in Chinese communities. Organ and tissue donation were suggested as another form of donating or contributing to others. One participant said:
Participants expressed the idea that an individual's actions can bring honour to the family; that is, through donation, a form of giving to others, a family could become honourable. One person expressed it this way:
Some suggested that the family could get a certificate or some sort of recognition when one of their family members donates an organ or tissue. Many liked the Trillium Gift of Life Network approach of honouring the families of donors, but not all agreed that recognition was required. One person said:
Another incentive to donating that was raised by some participants was the idea that the family of the person donating could receive a "credit" in the instance that a family member needed a donation in the future. This idea seemed to resonate for many participants, perhaps because it relates to the importance and obligation of family.
A major theme that arose was the belief that the body must be buried whole. This belief was generally associated with the older generation. The view of "wholeness" was based on tradition or on the fear of being dismembered. One participant said:
On the other hand, some older people did not hold this view. One man said
Another commonly held belief expressed was that of predetermined destiny. One participant used a Chinese proverb, translated in English below, to explain the idea:
Many participants indicated that their decision to donate would not be influenced by any particular faith beliefs. Reinforcing this view, the majority said they would not talk to their religious or spiritual leader about organ and tissue donation and transplantation.
The decision-making process
Some participants voiced concerns about the difficulty in making decisions about donation, particularly on behalf of family members. Many indicated that the decision to donate was a personal one to be made by the individual alone. Of those who thought it should involve others, a majority thought that family should be consulted. Some said they most trusted their spouse in helping them make the decision to donate, while others said it was their physician they trusted most.
There was significant concern that a family could override aperson's wish to donate after death. Many were very confident that families would respect a family member's decision to donate. It was suggested that it would be important to talk it over with one's family members so they were aware of the prospective donor's wishes. One person said:
Participants were asked for their advice on how to respectfully approach a family about donating a deceased family member's organs. People commented that the request could come from a respected person such as a physician, spiritual leader, or nurse. The request should also be in the language most comfortable for the family. One individual said:
There were numerous suggestions about the way a request could be made and the types of messages that could be offered. Many of these were about the privilege of helping another and the importance of giving practical and technical information (e.g., success rates of transplantation).
Discussion of consultation outcomes
Cheng (1997) observed that there is an unspoken tradition of not talking about matters that relate to death and dying in the Chinese community. Despite this, participants in this consultation were quite open with their views. Most indicated that they thought the decision about organ donation was a personal one, citing family as those they would consult. They believed that an individual's decision should be respected and not overridden by family members. However, family members must be informed of an individual's decision, so they would be aware of the perspective donor's wishes. All those consulted were supportive of increased education and promotional efforts among Chinese Canadians. Educating people about the risks to the living donor was suggested as important, as well.
Ethnocultural aspects of decision-making in donation and transplantation for Chinese Canadians are complex. Consistent with previous research findings (Molzahn, Starzomski, McDonald, & O'Loughlin, 2005), participants noted that they would not be prevented from donating by religious beliefs, nor would they consult with a religious or spiritual leader regarding their decision. However, traditional views regarding the sanctity of the body do appear to influence Chinese Canadians. This view relates to the concept of filial piety, respect for the views of one's ancestors, a notion that has a deep-rooted influence on people from Chinese communities (Fung, 1998). Although Yong, Cheng, and Ho (2000) noted that traditional cultural beliefs on keeping the body intact were the most common reason for refusal, evidence from the CCDT consultation shows that this view is associated with the older generation and may be changing. Building on the notion of respect for family, the value of donating organs and tissues emerged as being very significant to Chinese families. The concept of donating time and money might be expanded to bringing honour to a family in which a member had donated an organ.
Implications for policy and practice
Participants' views on traditional values and beliefs, how these may be changing, and how they influence decision-making may be a factor in addressing donation and transplantation issues in Chinese Canadian communities. Educational messages that address the positive aspects of donation, the generosity of the donor, the honour to the donor family, and the good fortune of the recipient may resonate more widely than messages that simply suggest discussing the prospective donor's wishes with family members.
Culture is a lens through which some individuals consider donation, yet there is extensive variation among individual views, variations contingent on a wide range of contributing factors. The work of Molzahn et al. (2005) highlights the multiplicity of views that exist within diverse communities. In their work with individuals, families and communities, they stressed that nurses and other health professionals need to avoid making assumptions about the beliefs of individuals based solely on their membership in a particular community. Optimal end-of-life care, including the opportunity to consider organ and tissue donation, is predicated on the understanding and respect of complex value systems. The ultimate hope is that every Canadian will have the opportunity to consider donation and that this opportunity is managed in an ethnoculturally sensitive manner
(1.) The mandate of the CCDT was to provide advice to the Federal/Provincial/Territorial Conference of Deputy Ministers of Health. Consultations were key to the background and basis of this advice.
(2.) Demographic and other details are available in full in the final report and background documents posted at www.ccdt.ca.
(3.) At the time of the consultation, the following people were members of the CCDT Diverse Communities Steering Committee: Dr. Rosalie Starzomski (Committee Chair and Initiative Lead), Rabbi Dr. Reuven P. Bulka, Ms. Diane Craig, Ms. Angela Diano, Ms. Beryl Ferguson, Ms. Sally Greenwood, Dr. Eugene Bereza, Dr. Michael F. McDonald, Dr. Anita Molzahn, Mr. Bernard Tremblay, Ms. Sybil Stokoloff, Dr. Joseph M. Kaufert, Ms. Kimberly Young.
Copyright [c] 2011 Canadian Association of Nephrology Nurses and Technologists
The participation of the Chinese Canadian community was the fundamental factor for success of the consultation. We are grateful to them for their generous gift of open and thoughtful dialogue. We also acknowledge the invaluable contribution of the Diverse Communities Steering Committee (see Endnote 3), Trillium Gift of Life Network, Dr. Anita Molzahn, the Canadian Council for Donation and Transplantation (CCDT) staff, Christina Rogers (Director, Initiatives for the CCDT), and Sandy Bell (Manager, Communications/Knowledge Transfer for the CCDT). The views expressed herein do not necessarily represent the views of the CCDT and/or the federal, provincial or territorial governments of Canada.
Boey, K.W. (2001). A cross-validation study of nurses' attitudes and commitment to organ donation in Hong Kong. International Journal of Nursing Studies, 39, 95-104.
Cheng, B.K. (1997). Cultural clash between providers of majority culture and patients of Chinese culture. Journal of Long Term Home Health Care, 16(2), 39-43.
Fung, K.K. (1998). Understanding Chinese cultures: A handbook for health care and rehabilitation professionals. Toronto: Yee Hong Centre for Geriatric Care.
Lam, W.A., & McCullough, L.B. (2000). Influence of religious and spiritual values on the willingness of Chinese-Americans to donate organs for transplantation. Clinical Transplantation, 14, 449-456.
Molzahn, A., Starzomski, R., McDonald, M., & O'Loughlin, C. (2005). Chinese Canadian beliefs toward organ donation, Qualitative Health Research, 15(1), 82-98.
Plawecki, H.M., Freiberg, G., & Plawecki, J.A. (1989). Increasing organ donation in the Black community. American Nephrology Nurses Association Journal, 16, 321-324.
Wu, A.M.S. (2008). Discussion of posthumous organ donation in Chinese families. Psychology, Health, & Medicine, 13, 48-54.
Yong, B.H., Cheng, B., & Ho, S. (2000). Refusal of consent for organ donation: From survey to bedside. Transplantation Proceedings, 32, 1563.
Yoshida, E.M., Partovi, N., Ross, P.L., Landsberg, D.N., Shapiro, R.J., & Chung, S.W. (1999). Racial differences between solid organ transplant donors and recipients in British Columbia. Transplantation, 67, 1324-1329.
Rosalie Starzomski, RN, PhD, Professor and Associate Director, Research and Scholarship, University of Victoria, School of Nursing, Victoria, BC. Clinical Ethicist, Vancouver Coastal Health Authority, Vancouver, BC.
Beverley Curtis, BHEc, Project Manager, Mental Health First Aid, Mental Health Commission of Canada. Former Managing Director, Initiatives, Canadian Council for Donation and Transplantation (CCDT).
Address correspondence to: Rosalie Starzomski, RN, PhD, Professor and Associate Director, Research and Scholarship, University of Victoria, School of Nursing, PO Box 1700, Victoria, BC V8W 2Y2. Email: firstname.lastname@example.org
Submitted for publication: September 20, 2011.
Accepted for publication in revised form: November 14, 2011.
Table 1. Steering committee values Appreciation of Appreciation of diversity incorporates an diversity approach that seeks to understand, not judge views. It involves genuine admiration for the cultural context and views expressed, and flexibility in response to diversity. Collaboration Collaboration is a co-operative, not competitive, approach. It allows for situations to develop organically, and builds on existing local activities. Collaboration involves sharing the. results with those consulted, and speaks to a commitment to the future of the partnership Integrity Integrity is exemplified by trust through open communication about the purpose of the consultation, values, processes used, and application of results. It shows respect for all involved, and their experience, expertise, heritage, and history. Excellence Excellence is shown by conducting the consultation with a continuous learning approach. The process is based on evidence available and input of local people. Rigour is applied to ensure high-quality information. Table 2. Principles for consulting with diverse communities Heterogeneity of Considerable variation exists within each populations ethnocultural community in respect to language, customs, and beliefs, as well as socioeconomic status, gender, and intergenerational and rural--urban differences. The consultation approach must respect the diversity within communities. Individuality of The individuality of each potential participants participant must be respected. Role of local Local community representatives must be community invited to participate as partners to help representatives gauge the relevance of topics, find an entry point into the community, recruit participants, and provide space. Flexibility Flexibility is essential at all stages, from planning the consultation, to working with community partners, to holding the consultation. Relationships and Time is needed to build relationships and trust trust. Using interviewers and facilitators known to the community helps to gain the trust of participants.
I've worked as a volunteer for a senior centre since 1992 and this is the first time I've heard about organ donation and transplantation. Even kidney transplant, I have not heard about it before.
There was a poster used in Hong Kong that I found useful. It asked, "Do you want your life to be extended?"
When my colleague donated his kidney to his sister, he had to take sick leave and the boss was not happy ... Most of his co-workers accepted it, as it was for his sister, but some people had to do his work, too, and they complain[ed].
... I think everybody here would like their donated body parts to go to a good person, someone who had made a contribution to society. They don't want to donate to a prisoner or somebody who is very bad.
I would not accept, because, even if it doesn't affect their health immediately, it could affect the health of the donor later on in life. Who knows?
You give your time, as a volunteer or you give out money because you have excess that you can share with others. But now you can do something more, which is that a donation can be an organ, can be your living tissue.
Since the family is grieving about their dying relative, maybe one could alleviate the grieving of somebody else waiting for an organ to sustain or prolong life. Would you consider having other families not grieve about a family member dying?
I am against the idea of recognition, either monetarily, which is the worst kind of reward, or even a certificate--because the donor gave voluntarily and there is no need to publicize or advertise about the dead person.
It is a traditional Chinese viewpoint that all parts of the body are given by the parents and we are not supposed to hurt any part of it. This is part of filial piety--a very old concept. Your parents have given you a complete body; you should be buried whole and complete.
I've been dealing with science and engineering my whole life. So, for me, after death, the body returns to nature. It's part of a natural cycle ... It's better to donate, as the body will just disintegrate.
Whether one is rich or poor or dies early or dies old, one cannot control. It's all to do with luck, or God or heaven.
The best way to do it is for the prospective donor to discuss it with his or her family members before signing the donor card and then it would be much easier for the doctor to ask the family if the donor dies. They would be aware of his wishes--it would influence them.
If the family is Cantonese-speaking, you have a person of authority who is Cantonese asking the questions. If the person can explain things in Cantonese it will be much better.
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