|
COPYRIGHT 2005 Health Law Institute
Introduction
Organ transplantation has been described "with only slight exaggeration [as] usher[ing] in the age of bioethics" (1) as it has focused public attention on the practice and its associated ethical issues. These compelling ethical issues have inspired a voluminous body of writing in the medical, legal and philosophical literature. These authors debate the intrinsic morality of transplantation. (2) Long-standing prohibitions against the mutilation of the body compete with the suggested moral duty to assist those in need. (3) Although it is now commonly accepted, the ethics of voluntary living donation are sometimes questioned given its lack of benefit to the donor and the medical ethical requirement of non-maleficence. (4) Another issue arises from the definition of death. (5) The old definition relied on the cessation of cardio-respiratory function but was not satisfactory from the perspective of organ donation as oxygen deprivation damages the organs. The move to a brain-death definition permitted organs to be preserved through life support.
In addition to these basic questions about whether we can and at what point we can take an organ and transplant it into another person, a group of thorny ethical problems are driven by the fact that the supply of organs for transplant is inadequate to meet the need. As a result, stronger measures, many of which raise ethical problems, have been proposed to try to meet the shortfall.
On the supply side, troubling questions are raised regarding the acceptability of using unorthodox sources of organs such as anencephalic infants, (6) animals, (7) fetuses, (8) and non brain-dead persons. (9) The inadequacy of the supply of organs has also raised questions about the propriety of more coercive methods to increase cadaveric donation.
Despite vigorous arguments for the state "nationalization" of cadavers, (10) most are unwilling to abandon the requirement of some form of consent by the individual or his or her next-of-kin. A range of methods short of state ownership of cadavers have been proposed to increase donation rates, including the suggestions that (1) everyone should be required to register either consent or refusal to donate ("mandatory choice"), (2) physicians should be required to ask the next-of-kin to consent to donation ("required request"), and (3) consent to donate should be presumed and those unwilling should be required to register their refusal ("opt-out" or "presumed consent").
A large variety of proposals seek to obtain consent by offering incentives. These range from the neutral reimbursement of expenses (e.g., live donors might receive reimbursement of lost wages and travel expenses, while the estates of dead donors might receive reimbursement of funeral expenses), to positive financial and non-financial inducements. These suggested incentive-based systems are that (1) people be permitted to sell organs (either privately or to the state) receiving payment while alive or posthumously via their estates, (2) people who donate or register to donate should receive tax breaks, (3) people ought to be able to make conditional donations, specifying the class of permitted recipients, (11) (4) people should be able to set up "paired organ exchanges," (12) (5) people who donate should be able to designate a charity to receive a cash award, (13) and (6) people who donate should receive medals or other forms of public recognition and gratitude.
Another proposal that has been made sporadically for some years is what has been called a "solidarity model," (14) a "reciprocity policy," (15) a "priority incentive," (16) or "preferred status." (17) In such a system, those who register as donors receive some degree of preference later on should they require an organ. The terminology chosen may be significant, as the labels emphasize different aspects of the proposed approach and might affect how it is received. (18) The terms solidarity and reciprocity emphasize the values of community and interdependence, while priority and preference emphasize the appeal to individual self-interest, as do the terms incentive and status. In this paper, I will call the approach a priority system.
A priority system was suggested as early as 1967. Joshua Lederberg recognized the problem of supply very soon after the first heart transplant was performed and wrote about the idea of a priority system for organ donation and allocation. (19) Since then, many proposals, which are described below, have been made. There is a priority system in operation in Singapore and elements of a priority system exist elsewhere, as is discussed below.
Priority systems raise ethical concerns with respect to both the donation side of organ transplantation as well as the allocation side. From the perspective of donors, some suggest that the system is coercive and erodes altruism. With respect to allocation, the system would prefer some potential recipients over others. While this is necessary in any non-random system of rationing scarce resources, critics suggest that the criterion of previously-expressed willingness to donate would operate unfairly and also reflects an impermissible method of allocation according to adjudged social worth. Other concerns exist regarding deviation from allocation according to need or medical utility, as well as with respect to the commodification of body parts.
This article will consider the advisability of using a priority system. Part I of this article will provide some necessary background on the current Canadian organ transplant system, particularly with respect to Canadian attitudes toward donation. Part II will outline the elements of the various forms of priority system. Part III will consider the advantages and disadvantages of priority systems, and will offer some suggestions about how an ethically acceptable priority system might be designed.
Part I Organ Transplantation in Canada
The number of Canadians awaiting an organ transplant has been steadily increasing, and reached 4054 people in 2004. (20) In the same year, 224 people died while on the waiting list. Between 1993 and 2002, the Canadian national donation rate hovered between 405 and 470 cadaveric donors (or 13 and 15.3 per million). (21) In 2004, 1347 organs (22) were transplanted from 414 cadaveric donors. (23)
The donated organs are allocated using various allocation algorithms, which vary according to the organ in question. The Trillium Gift of Life Network maintains the allocation algorithms applied in Ontario. (24) In Ontario, patients awaiting a heart or liver transplant are placed in one of a list of classes according to the urgency of their need, and organs are allocated to blood-type compatible recipients in the most urgent class first. Within a class, recipients in the donor region are ranked ahead of others, and recipients are ranked by time on the waiting list. The kidney allocation algorithm similarly prefers local high urgency patients and considers wait list time. The U.S. United Network for Organ Sharing ("UNOS") similarly considers tissue compatibility, urgency of the need, time spent on the waiting list, and the likelihood of a successful outcome. (25) As in Canada, substantial preference is given to recipients from the donor's region. (26)
Canadian donors can register in a variety of ways. Some provinces operate specific organ donation registries, (27) while in other provinces willing donors express consent through their driver's license, health card or by carrying a donor card from an organ procurement organization. (28) Most donors die from cerebrovascular accident and head injuries, and a declining number die as a result of motor vehicle accidents. (29) The actual organ retrieval rate from potential donors appears to be quite low, at approximately 16% of potential donors who die as a result of head injury and 10% of those who die as a result of cerebrovascular accident. (30)
The relevant legislation in Ontario is the Trillium Gift of Life Act. (31) The Act provides that any person over age 16 may consent to donation in writing at any time or orally during the person' s last illness in the presence of two witnesses. (32) The Act provides that consent so given is "binding and full authority" for the use of the body or specified body parts of the decedent, except if there is reason to believe that consent has been withdrawn. (33)
Transplantable organs are lost for various reasons. Some are lost due to a failure by medical personnel to approach the families of potential donors. A 1998 study of 15 Canadian hospitals indicated that families of only 158 of 232 potential donors that were identified were approached. (34) Some provinces have amended their legislation to require that the organ procurement organization be notified of any death or impending death of a potential organ donor and to provide that family consent to donate must be requested. (35)
Notwithstanding a donor's consent, physicians will not remove organs without the consent of family members. In Ontario, the Trillium Gift of Life Network asks donors to speak with their families. (36)
"When you sign a donor card, you give doctors permission to recover your organs and tissue upon death. This does not mean that the doctors must recover your organs. Out of respect for the feelings of grieving families, hospital staff will talk with the next-of-kin about their feelings regarding donation and what their loved one would have wanted. That is why it is important that you talk with your family and loved ones about your wishes ..." (37)
Not only do hospital staff feel a duty to respect the emotions of a grieving family, but they depend upon the family to provide information that is essential for ensuring the quality and safety of the donated organs. (38) Family consent depends critically upon whether the family is aware of a decedent's wishes. A survey conducted for Health Canada in 2001 indicated that 83% of families were very likely to consent to the donation of a family member' s organs if the family member had registered to donate and discussed donation with the family, and another 13% were somewhat likely to consent. (39) If the family member had registered but not discussed the matter with the family, the numbers slipped to 65% who were very likely to consent and 26% who were somewhat likely to consent. (40) If the family member had not registered to donate, only 25% were very likely to donate and 31% somewhat likely to donate. (41) Unfortunately, approximately one third of potential donors are lost due to family refusal. (42)
Given the critical importance to families of knowledge about the deceased's willingness to donate, improved registration rates would be helpful. The 2001 Health Canada poll noted the importance of increasing the numbers who sign organ donor cards, as this would "encourage more next of kin to agree to a donation, since next of kin are strongly supportive of agreeing to a donation if their loved one has signed a card." (43)
The overwhelming majority of Canadians are aware of the need for donated organs. (44) Although a large majority of Canadians support organ donation and transplantation, and say they are willing to donate, far fewer actually discuss the matter with their families or register their commitment to donate. Contrary to the belief of many Canadians, Canada has one of the lowest donation rates among industrialized countries, at less than half of the 31 donors per million achieved in Spain. (45)
The 2001 Health Canada poll reported that 96% (46) of Canadians approve of organ and tissue donation, but only 46% have decided to donate, while 45% are undecided and 9% have decided not to donate. (47) The poll shows that women, those aged 45-54 years, better educated and more affluent respondents are more likely to decide to donate, while those older than 65, the least educated and least affluent respondents, those whose religion is non-Christian, those whose ethnic background is either non-European or European other than French or British, and those born outside Canada are more likely to be undecided. Non-Christians older than 65 years are most likely to have decided not to donate. Of those who have made a decision either to donate or not, most (85% of respondents) say they have told their families about their decision. (48)
The number of respondents who have actually signed a donor card is 45%. (49) The poll shows a similar demographic pattern as those who say they have decided to donate. (50) It is quite possible that the survey overstates the number of Canadians who have actually registered to donate. (51) The current number of registered donors indicated on the British Columbia Transplant Society's website is only 551,189 (52) in a population of about 4.2 million, suggesting a registration rate closer to 13%.
The tendency for high public support for donation, but much lower personal willingness to donate and even lower registration to donate is mirrored in American and UK surveys. A 1993 American poll reported that 85% of Americans supported donation for transplantation, but only 55% reported they were willing to register to donate. In fact, only 28% reported having formally committed to donate on a driver's license or donor card. (53) A 1990 poll in the UK found that 73% of respondents said they were willing to donate organs, but only 27% actually had signed a donor card and only 7% carried it with them. (54)
Of the respondents to the Canadian survey who were unwilling to donate an organ, 59% would willingly accept an organ and 16% would consider accepting an organ. (55) Of those undecided about whether to donate, 81% would willingly accept an organ and 9% would consider it. (56) The 1993 American poll also indicated that nearly half of those who were opposed to donation would accept an organ transplant if they needed one. (57)
Of those who decided not to donate, the reasons for refusing to donate were: poor health (18%), "body should be whole" (12%), "too old" (12%), religious reasons (10%), "don't feel like it" (9%), fear or discomfort regarding donation (4%), "body would not be useful" (3%), and concern about premature harvesting or less effort in saving donor's life (3%). (58)
Of those who were undecided about donation, the reasons for indecision were: not having thought about donation (27%), needing more information (8%), procrastination (7%), being too old (6%), health (4%), simply undecided (4%), "body parts no good" (4%), "too young to decide or think about it" (4%), feeling it is a family decision (4%), religious issues (3%) and discomfort thinking about the topic (3%). A large number don't have a reason for their indecision (17%) or offer other reasons (11%). (59)
The 2001 Health Canada poll also included questions about the respondents' beliefs about the justice of the organ donation system. Opinion was divided among those willing to donate as well as those unwilling to donate on whether the rich are more likely to receive donations. (60) Most respondents rejected the idea that doctors might prematurely declare someone dead in order to harvest organs. (61) The poll found that women and better educated and affluent respondents are more likely to reject these ideas, while those of non-European ethnic background and those born outside Canada are less likely to reject these ideas. (62)
Despite the widespread recognition of the need for organs and the widespread social approval of transplantation, the actual willingness to donate is far lower. There are various reasons for this including widespread psychological resistance to thinking about the subject, religious objection, and mistrust of the medical system particularly among certain ethnic communities.
It seems likely that in many cases a key impediment is the psychological discomfort of thinking about death and with contemplating the dissection of one's own remains (as well as perhaps the minor inconvenience of registering). (63) These psychological impediments might arise from distaste for bodily mutilation, concern that brain-dead patients are not really dead (and so would be killed by organ removal, would suffer during organ removal, or would be allowed to die in order to access organs), belief in resurrection (either religious in nature or not), discomfort with the identity-related implications of moving one's own body parts into another person, and distrust of medicine and the medical profession. (64) Emson draws on historical burial practices to emphasize the long-standing and widespread human uncertainty about the finality of death. He notes that there are ample examples of the belief that,
"... death is not the end of the soul and that the life of the body can somehow persist or be restored. This was expressed in the burial practices of the earliest humans ... Such practices have been elaborated by many different cultures, as in preservation and veneration of the bones of ancestors; burial with grave goods, food, slaughtered animals, and slaves; and mummification and embalming, to retain a simulacrum of continuing life, the last a common practice in many contemporary societies ..." (65)
It is, perhaps, not surprising then that so many supporters of donation cannot bring themselves to decide to donate and to register their decision.
Only a fairly low number of Canadians indicate religious reasons for their unwillingness or indecision regarding donation. Furthermore, most religions endorse organ donation and/or leave the decision to individual choice. (66) Nevertheless there are cultural and religious traditions that strongly emphasize respect for human remains and so are uncomfortable with donation as it is considered a desecration of a family member's remains. (67) Furthermore, many religions express a belief in a form of bodily resurrection, although perhaps not strictly in the form in which the body existed at the time of death. (68)
"Jewish religious law explicitly prohibits mutilation of the dead body. Contemporary developments have refined that position and allowed it to be interpreted as permitting removal of an organ when the life of another can thereby be saved ... Islamic beliefs about resurrection require bodily integrity at the time of death. Buddhism also abhors mutilation of the body and transplantation has been viewed skeptically. Nevertheless, in most Islamic and Buddhist countries, donation after death has been permitted if the explicit consent of the donor has been obtained...." (69)
As suggested by the 2001 Health Canada survey, there are ethnically-based differences in willingness to donate, and in whether or not respondents were concerned that doctors would be more likely to declare them dead prematurely if they were known to be donors. The same pattern is reflected in American comparisons of the attitudes of non-white and white survey respondents. For example, Siminoff and Mercer found that "non-whites were far more concerned that if doctors knew they were organ donors, they would do less to save their lives: 51.9% of non-whites agreed as opposed to only 20.8% of whites." (70) A comparison of African-American with white respondents found that African-American respondents were almost twice as likely to agree with a statement of concern that doctors won't do...
Read the full article for free courtesy of your local library.
|
Bookmark this article
Print this article
Link to this article
Email this article
Digg It!
Add to del.icio.us
RSS
