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COPYRIGHT 2005 Health Law Institute
[I]f a gift-of-life ethic is preferred and policy makers cannot solve the philosophical dispute over emotion in morality, a dispute that divides proponents of altruism and of routine procurement, then policy makers could judge whether the prevailing model of altruism has received a fair and sufficient test. This judgment would flow from an initial endorsement of altruism as a preferred public policy, a policy that may be modified or abandoned when it proves ineffective or too costly.
--Law Reform Commission of Canada (1)
We thought we were off to a great, great first step.... Now looking back at everything, nothing has changed.... I'm doing this alone and I shouldn't have to do this alone ... Deep, deep down they know they aren't getting it right.... They need a general that will set the tone, lead the charge and address the issues and get the job done.
--George Marcello, transplant recipient (2)
Introduction
In the 2000 Throne Speech, then-Premier Harris' government "accepted as a millennium challenge the goal of doubling the organ donation rate by 2005." (3) Following the recommendations of the Premier' s Advisory Board, the government proceeded by revising and renaming the Human Tissue Gift Act (HTG Act). (4) Repackaged as the Trillium Gift of Life Network Act (TGLN Act), (5) Ontario's new legislation created a new, independent organ procurement organization (OPO) that would follow the example of successful OPOs in other jurisdictions by installing and supervising transplant coordinators in donor hospitals, reimbursing hospitals for costs associated with organ procurement, and by engaging in massive public and clinician education campaigns.
The government's response to the organ shortage has been essentially managerial. While it undoubtedly has a legal component, i.e. the establishment of an independent body with delegated statutory powers, this body is intended to work within already-established legal boundaries that structurally limit the potential for increased organ donation. In this paper I will review the advisory process leading up to the establishment of Ontario's new OPO (the Trillium Gift of Life Network (TGLN)), and the decisions that followed from that advisory process. I will assess TGLN's progress to date, and review the prospects for improvement in donor rates under the new regime. I will then examine in detail one potential legal solution that was left off the table from the beginning but which, if considered, could have brought about--and still could bring about--a dramatic improvement in organ availability in this province.
From Tissue Gift to Gift of Life
Don Cherry's Recommendations and Mike Harris' Response
Premier Harris' government signalled its interest in the organ shortage at the beginning of its second term in office. Lieutenant Governor Hilary Weston's Speech from the Throne gave the issue pride of place on its legislative agenda, appearing near the beginning of the new government's commitments for the coming term:
The miracles of modern medicine help many live well, but some patients' survival depends on the selflessness of others. George Marcello waited years for a donor before his life-saving transplant in 1995. This year he walked across Ontario to increase awareness of organ donation. In response to Mr. Marcello's mission, and on behalf of the people of Ontario, Premier Harris has accepted as a millennium challenge the goal of doubling the organ donation rate by 2005. Your government is developing an organ donor action plan that, through outreach and education, will raise public awareness and improve registration. A new Premier's Advisory Board on Organ Donation, headed by hockey legend Don Cherry, will recommend complementary initiatives. (6)
"Challenge" was an appropriate choice of words. The situation in Ontario at that time, as the Premier's own Advisory Board would observe in its report, was bleak:
There are currently approximately 1,731 people on Ontario's waiting lists for organ transplants. It is estimated that in 1999 over 100 Ontarians died waiting for a transplant. All predictions are that the waiting lists will continue to grow, the wait for a transplant will become longer and more people will die waiting if nothing is done to improve organ and tissue donation in our Province. (7)
The Advisory Board succeeded in painting a dire picture of the state of voluntary donation in Ontario, noting not only that supply fell woefully short of demand, but that by comparative measures, Ontario's performance was sub par. The provincial rate of organ donors per million of population (dpmp), comparable in 1999 to the national rate of 13.9, was put to shame by rates in jurisdictions such as Spain (33.6), Pennsylvania (33.8), and Texas (26). (8) It is worth noting, though, that before the Board began its research, its horizons had been limited by its mandate. As the Throne Speech made clear, with its focus on "education," "public awareness," "registration," and "complementary initiatives," a radical rethinking of the legal regime in which organ donation occurs was not in the offing. For a small "c" conservative government the attraction of a circumscribed approach was in part ideological, as a news report following the release of the Advisory Board's report suggests:
"The long arm of the law is not going to get involved," Harris said during a visit to the Hospital for Sick Children. "It will be individuals first and family members who will always have the last say and I haven't seen anything in the recommendations that is in any way obtrusive." (9)
The Advisory Board's recommendations were, indeed, unobtrusive. These included legislation requiring hospitals to create organ donation protocols, implement "routine referral" of all imminent potential cadaveric donors, and to make "required requests" to the families of potential donors. (10) All sites receiving potential cadaveric donors would have professional in-house donor coordinators, (11) and the cost of these, as well as the medical and administrative costs associated with facilitating organ donation from these sites, would be reimbursed by the Ministry of Health. (12) The farthest-reaching of the Board's recommendations was for the creation of the TGLN to "lead and manage organ and tissue donation in the Province of Ontario." (13)
The legislative response to the Advisory Board's recommendations was favourable. As of February 2001, the former HTG Act was restyled the TGLN Act, with enabling provisions creating the TGLN and assigning it a broad mandate that included duties to "co-ordinate and support the work of designated facilities in connection with the donation and transplant of tissue," (14) "manage the procurement, distribution and delivery of tissue," (15) and "establish and manage waiting lists for the transplant of tissue." (16) The remainder of its mandate focuses on promoting educational initiatives, collecting data, and advising government as needed.
Not surprisingly, the bulk of the HTG Act remained untouched, with conditions surrounding issues of consent for post-mortem donation remaining as they had been drafted in the mid-1980s. (17) The significance of this choice will become clear shortly.
Donation Rates in 2005: Double or Nothing?
We are now several months past the year by which the former Premier had forecast a doubling in the provincial rate of organ donation. How close have we come to fulfilling his "millennium challenge"? In July, 2003, the TGLN published its annual report. (18) This report documents considerable progress in meeting the administrative milestones suggested by the Advisory Board. Donor coordinators had been recruited and trained, (19) participation agreements between TGLN and referring hospitals were put into place, (20) and Ministry reimbursement of hospitals for donation-related costs had been implemented. (21) Most of the organization's accomplishments centred on designing future programs and establishing more detailed plans.
In terms of an appreciable increase in donation, the Annual Report has remarkably little to say. The Message from the CEO that introduces the report states frankly: "We did not expect TGLN's efforts to result in an increase in donations during this start-up year," (22) and the remainder of the report may well have been calculated to manage expectations in this regard. Statistics on living and cadaveric donations are provided but are relegated to three pages in an appendix. (23) These give the actual numbers of transplants performed, referrals, and persons on waiting lists, but only for the year 2002-2003; no comparative data from previous years is presented to show progress, nor is the dpmp rate given.
TGLN's Annual Report 2003-2004 was not publicly available at the time of writing, but will reportedly hold few surprises and will report little improvement in donation rates. (24) Significantly, TGLN has abandoned altogether Premier Hams' "millennium challenge" goal of doubling the transplant rate by 2005--the goal that, it should be remembered, inspired the consultation process and the legislative change that brought TGLN into being in the first place--and is currently engaged in the process of determining how much improvement may reasonably be expected through TGLN' s efforts. (25)
Media reports since the 1999 Throne Speech reveal that little if anything in the way of quantifiable results has been achieved in the intervening five years. In the first year of the TGLN Act, "the number of organ donors in Ontario plummeted by 30 per cent in 2001 to hit the lowest total in a decade," bottoming out at a dpmp of 10.6 and slipping below the national average for that year. (26) A recent series of human-interest stories in the Toronto Star revealed that the donation rate had grown slightly from 12.5 dpmp at the end of 1999 to 13.5 dpmp by the end of 2003. (27) It also reported that the TGLN's CEO had resigned after just two years at the helm, and revealed (in the second introductory quote above) the frustration of George Marcello--the transplant patient whose recovery inspired the "millennium challenge" of 1999, (28) and who has been a standard-bearer for the cause ever since. (29)
At worst, it appears to be the case that the province's approach to managing the organ shortage has stalled at the starting gate. At best, it is likely that this bureaucratic approach to the problem will not be enough to solve--or even keep pace with--the crisis. The number of patients dying on waiting lists nationwide continues to climb steadily. (30) Some experts have predicted that over the next three decades the shortfall between organ supply and demand will increase by 291%. (31) Others forecast a 500% increase in demand for liver transplants over the next decade alone. (32) Moreover, the current approach alone is unlikely to reach the levels of success enjoyed in the countries Ontario has sought to emulate because our age demographics and mortality patterns are less conducive to high rates of potential cadaveric donors. (33) If the crisis is to be ended or at least managed for the future, a combination of radical legal solutions will be required. This paper will argue in favour of one such solution.
Cadaveric Donation: From Opting In to Opting Out
Current Law and Objections to Change
Express vs. Presumed Consent
Ontario's current regime with respect to cadaveric donation is premised on a form of "express consent." This is just one of several possible policy choices. (34) Here, as in other provinces and the United States, no procurement of solid organs for transplant occurs without explicit consent. (35) Adults are free to signal their willingness to donate organs after death (typically in writing, on a card that is issued with their driver' s license), (36) or they may make no decision at all. If a person fails to record a preference before their imminent death, it falls to transplant professionals to obtain the permission of the decedent's family, according to a scheme that ranks family members in a descending...
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