16 July 2012

Organ Donation

'Family Override of Valid Donor Consent to Postmortem Donation: Issues in Law and Practice' (2008) by Jocelyn Downie, Chantelle Rajotte & Alison Shea comments that
In 2005, 3974 Canadians were on waiting lists for organ transplants and 275 patients died while waiting. Canada's organ shortage has led to calls for changes to Canada's organ donation system and its legal framework. Herein we examine an issue in which law reform could both increase the number of available organs and better align practice with respect for autonomy, a core value underpinning the Canadian legal system: the issue of family overrides of a valid donor consent to postmortem donation. That is, we examine what should happen when an individual consented to postmortem donation but the family would like to override that consent. First, we examine the requirements for valid donor consent. Second, we consider the legal status of family overrides of valid donor consent in relation to postmortem donation. Third, we describe the available data with regard to the practice of permitting families to override valid donor consent and discuss the possible reasons for this practice. Finally, we describe and defend the desired results with respect to law reform and describe the actions needed to realize these results.
As discussed in a submission I made to the NSW inquiry into organ donation, a similar regime exists in Australia, with medical practitioners and support staff heeding prohibitions by the relatives that in some instances are quite clearly at odds with a deceased person's wish to donate organs at death.

The 2010 Australia New Zealand Organ Donor Registry (ANZOD) report - noted here - indicated that over 40% of the families of registered organ donors do not allow the organs of their loved ones to be donated once they die.

The Canadian authors conclude that -
With the exception of Manitoba and possibly Quebec, organ and tissue donation legislation does not permit valid donor consent to be overridden by families. This statutory position enjoys strong public support, as evidenced by further results from the 2006 survey mentioned above. This statutory position is also ethically sound, as it is supported by the principle of autonomy, the recognition that the donor has interests which survive past death and should be respected, and the substantial benefit of prolonged or improved quality of life experienced by transplant recipients. It has been argued that respecting the grieving family's desire not to donate is justifiable because it is family interests that are impacted the most by organ donation, whereas the donor is dead. Critics of this argument contend that failing to respect the donor's valid consent violates his or her autonomy and there are individual interests that survive death, such as the expressed wishes of the deceased in a will, that are respected despite family opposition and, as has been noted in the literature, the altruistic giving of one's organs and tissues can be argued to be a more personal and intimate decision than the disposal of one's property in a will and deserves equal, if not more, respect. Lastly, just as coroners' legislation permits forensic autopsies without family consent because of larger societal interests in justice, provincial and territorial organ and tissue donation legislation that makes valid donor consent full and binding authority for donation and transplantation regardless of the family's wishes can be said to reflect the larger public interest in respecting individual autonomy and prolonging life. By ensuring that current practice is aligned with the law, the intent of both the donor and the legislation will be realized: more lives will be saved or improved. The grief of the family need not be ignored as supports can be put in place to help families that oppose donation understand the implications of their loved one's consent. A combination of law and policy reform, practice reform, and education is recommended below to achieve a consistent and coherent approach that respects valid donor consent and maximizes postmortem organ procurement from donors who have given valid donor consent. 
A. Law Reform
In 1987, when the Uniform Law Conference of Canada was considering amendments to its uniform tissue donation statute, it was recommended that “the next-of-kin should not be able to countermand the wishes of the deceased.” It was further recommended that this issue be addressed through education rather than through law reform, as the legislation was sufficient. However, given the obviously limited success of education alone in the past 20 years to rectify the situation, as evidenced by the multitude of government and organ donation program websites that still state that the family can override valid donor consent, law reform should be undertaken in addition to education. We recommend that:
1  The legal requirements (substantive and procedural) for a valid consent should be clearly set out in organ and tissue donation legislation. In particular, to reduce the potential for uncertainty, valid forms of “writing” should be clearly identified in regulations (made under organ and tissue donation legislation), eg, that “writing” includes organ donor cards. Further legal research is needed to examine what the substantive requirements should be for valid consent to postmortem donation. This research should consider the possible consequences of including informed consent as a requirement (eg, how such a requirement would affect the format and process for giving consent to postmortem donation). 
2  The word “binding” should be explicitly defined in organ and tissue donation legislation (ie, “binding” means the consent must be followed unless clearly articulated statutory exceptions are met). Manitoba should add the word “binding” to its postmortem donor consent provisions. All jurisdictions that have “binding” consent should have an exception similar to s 9 of Nova Scotia's Human Tissue Gift Act, which provides for circumstances in which the organs and tissues are unusable.
3  Quebec should clarify that family opposition is not a compelling reason not to follow the donor's wishes expressed in a valid consent. 
B. Policy Reform
Policy reform is needed so that policies and protocols regarding organ donation and procurement clearly and accurately reflect the law; specifically, that valid donor consent must be followed and cannot be overridden by the family (except in Manitoba and Quebec).
The policy statements of British Columbia's Transplant Society, an agency of the provincial health services authority that directs, delivers, or contracts for all organ transplant services in British Columbia, should be considered a possible Canadian model for policy reform. This Society's website accurately reflects the law in this area and clearly states that their registration form is valid legal consent under British Columbia's Human Tissue Gift Act. According to their website, the medical staff will always follow valid donor consent and the family will be approached with a copy of the donor's valid consent to inform them of the donor's decision. The Society's experiences with their policy could be used to inform the creation of policies throughout Canada. 
C. Education and Public Awareness 
Legal education and public awareness programs will be crucial to the success of efforts to inform all relevant stakeholders that the current practice of respecting family opposition over valid donor consent is not legally acceptable. The current law should be taught in relevant health professional degree programs, such as nursing and medicine, and should form part of continuing education programs for health professionals working in this field. Once policy reform is in place, public awareness of the legally binding nature of valid donor consent - and the benefits of giving such consent, such as saving lives and reducing the burden of decision making on one's family - should be increased and included as part of organ donation awareness programs. Public information should be correct and any necessary changes should be made to websites and other media.