This comment is submitted by Not Dead Yet, a national disability rights organization, in response to a request for comment on a proposal/white paper (proposal) by the Ethics Committee (the Committee) of the Organ Procurement and Transplantation Network (OPTN) on the topic of “Living Organ Donation by Persons with Certain Fatal Diseases Who Meet the Criteria to Be Living Organ Donors”.
The organ transplant program saves lives, including some of our organization’s grassroots advocates. Its goals are of unquestionable significance. In order to function effectively though, it needs to have strong public trust and support. The safety of potential donors should be of utmost concern. All lives of living donors must be equally valued. The OPTN must never pursue any policies that expose some donors to more risk than other donors. In short, the transplant program must be above suspicion.
We agree that there are some underlying health conditions that would not preclude a willing person from being a living donor. Decisions must be made on a case-by-case basis with the preservation of the person’s normal health as a paramount value. We are therefore disturbed and disappointed by the tone and tenor of the proposal as well as the recommendations that would create a two-tiered system of assessment, reporting and scrutiny.
The Committee’s focus as it seeks to expand the donor pool is not on donor protection but on transplant hospital protection. Although the details of implementation will be left to other committees, the thrust of the proposal is on reducing scrutiny for certain donor deaths. The Committee feels that in some cases, harm to donor can be traded off against other factors. The Committee gets to where it wants to be by conflating conditions which can be chronic and disabling with fatal conditions, and then blurring everything into terminal. This brings to mind what James McGaughey, former executive director of Connecticut’s Office of Protection and Advocacy, has written in a somewhat different context, “physicians…did not understand the prospects of people with disabilities to live good… lives…and recommendations sometimes reflected confusion concerning the distinction between terminal illness and disability…people with significant disabilities are at risk of having presumptions about the quality of their lives influence the way medical providers…respond to them. ” 
The Committee’s statement of the problem leads in the wrong direction. It sees the problem as the reluctance of transplant hospitals to approve persons with certain fatal diseases for living donation due to concerns over violating informed consent policy requirements and because all living donor deaths within two years of the organ donation date must be reported to the OPTN through the Improving Patient Safety Portal. (pg. 1) It makes recommendations accordingly. These recommendations include that elements of current OPTN Policies for living donor informed consent, psychosocial and medical evaluation and follow-up should be modified to accommodate the circumstances of individuals with certain fatal diseases, and that OPTN should take steps to remove disincentives and undue scrutiny of transplant hospitals that undertake the recovery of organs from individuals with certain fatal diseases who wish to be living organ donors. (pp. 3, 12)
The Committee could find only one woefully inadequate study on the outcomes of living donors with underlying conditions (pp. 7-8) – a Dutch study where two of the only five persons in the sample later died by assisted suicide. This would lead one to reasonably believe that there should be more scrutiny of such donor deaths rather than less. In the U.S., many people with disabilities and their family members experience disparate treatment depending on the specific hospital or medical facility involved. We have only anecdotal accounts, but have heard of family members who say, “If you want your child to live, don’t go to X hospital, go to Y.” Tracking and investigating donor death data is necessary to determine if , in the context of organ donation, a facility’s organizational culture devalues people with disabilities or chronic conditions that may be terminal or shorten lifespan.
Yet the Committee seems to want to create a special subgroup of living donors to whom the normal rules governing living donations do not apply and whose deaths are of less concern than the deaths of other donors because these living donors are presumably anticipated to die soon anyway. The recommendations would promote overt and lethal discrimination between donors based on disability and perceived health status. The recommendations are not worthy of the OPTN. They are totally unacceptable to us.
One example of the Committee’s biased double standard is while OPTN policy is not to accept persons as living donors if they show evidence of suicidality, it urges an exception for people with certain fatal diseases so as not to preclude people with plans for assisted suicide (where legal) from first undergoing a living organ donation. (pg. 10) Given the recent studies that many people who request assisted suicide are motivated by feelings of being a burden and other existential issues, the Committee seems to have joined those who see no reason to ensure that such issues are addressed by adequate home care, palliative care, counseling, peer contact and other supports. The Committee, which might have misinterpreted the legalization of assisted suicide in a few states as the normalization of assisted suicide, is probably unaware of how this sounds disturbingly like “organ euthanasia.” Surely, public confidence in the organ procurement system will not be enhanced by any policy proposal that hints toward a future in which organ euthanasia is accepted and promoted.
Along these same lines, the Committee references feelings of uselessness and insecurity as motivations for the subclass of living donors. (pg. 8) It lists as psychological benefits to the donor improved self-esteem and enhanced meaning in life. (pg. 12) Yet a healthy and nondisabled person would presumably be disqualified from being a donor if he wanted to be a donor because he felt bad about himself or was looking for meaning. Organ donation is not psychotherapy. Belying the title of the proposal, the Committee appears to be advocating accepting persons as living donors who may not in fact meet OPTN psychological criteria to be living donors. The Committee must not support the implication that people with terminal and “fatal” diseases should feel like a burden, or that they need or want to justify their existence.
Throughout the proposal, there is an air of living organ donation being something certain unfortunate people can do to be socially useful as they wait/plan for death. Indeed, the proposal lists the psychological benefit to the family or community of the donor from the knowledge that their loved one was generous to other people prior to death. (pg. 12) This smacks of utilitarianism.
All this has everything to do with medical/societal prejudices towards disability. Several of the conditions discussed in the proposal are deceptively depicted as fatal. They should more accurately be seen as chronic conditions which people must manage effectively and which are accompanied by some level of disability. People can live for decades with multiple sclerosis, cystic fibrosis (which is present from birth) or COPD and, indeed, remissions are possible with multiple sclerosis. Even with advanced neuromuscular conditions like ALS, the course of the disease and life expectancy are quite variable. Indeed, Duke University’s ALS Clinic is studying cases in which symptoms have partially reversed.  This is not semantics. If a person is mischaracterized as being in life’s twilight, this changes the perception of risk.
The Committee indicates the values of autonomy, justice, beneficence and non-maleficence should be considered in determining acceptable risk. However, good values can be perverted by bias or ignorance of the social context. The Committee is applying these values without any understanding of the disability medical experience – an experience that includes struggling for access to unbiased health care, being defined solely by one’s disability and fighting against “better dead than disabled” attitudes, an experience that wears on an individual.
It should be no wonder that some people diagnosed with ALS, who are too often given excessively grim prognoses and too rarely exposed to people who lead successful and fulfilling lives with respiratory support, feel that they cannot adapt. Yet the main difference between them and people with lifelong neuromuscular disabilities who have advanced to the same level of support needs is that they had less time to adjust and prepare. For example, individuals may not be made aware of advances in non-invasive ventilation or such innovations as voice banking (where favorite expressions spoken in one’s normal voice are recorded and saved for later use with a speech synthesizer). It was extremely concerning to read The Organ Donation and Transplantation Alliance’s comment based on a study of neurologists’ attitudes, and the Alliance’s stated plan to “communicate the findings of this publication to all local and regional ALS societies in the United States with the goal of spreading its message to more patients with ALS, . . ..” This stacks the deck against adaptation, support and survival.
Thus, the Committee’s dubious conclusion is “In the case of living organ donation by persons with certain fatal diseases, although the act of surgery may bring harm, the potential benefits to the recipient and the living donor (beneficence), coupled with expressing respect for the donor’s autonomy, may be more important considerations than the inherent medical risk to the living donor from organ donation…to respect the donor’s autonomy, the most important consideration is that the magnitude of these risks are considered reasonable by a well-informed patient and the medical team.” (pp. 9-10)
Concerning informed consent with respect to medical issues, as the Living Donor Committee (LDC) pointed out in its online comment:
LDC clinicians also noted concern about assessing and communicating the possible impacts of living donation on terminally ill patients’ overall health status, the quality of their remaining life, and progression to death. An LDC donor with a terminally ill family member who wished to be considered as a living donor also noted patients’ and families’ complete reliance on clinicians’ assessment and communications about potential implications. Such assessment and communication concerns would not be resolved by eliminating certain evaluation criteria or removing the requirement to report the death of a terminally ill living donor.
But for the Ethics Committee, it appears that as long as the donor gives minimally informed consent, it is carte blanche; anything goes short of organ euthanasia (which, as the Committee admits on page 11, is currently illegal).
We are in strong opposition to this view; it is discriminatory and devalues people’s lives based on health/disability status, a fact that cannot be obscured by the jargon of medical ethics. There must be an objective standard for determining what degree of risk is too much risk for a living donor to run and it must be applied to all donors equally.
We also find the Committee’s belief that its proposal will have no impact on OPTN’s goals of improving donor outcomes and promoting donor safety (pg.3) to be highly questionable. Reducing scrutiny for donor deaths and creating exceptions to OPTN standards will only undercut these worthy and necessary goals. We note that the Committee uses the “terminally ill” when discussing impacts but uses the more qualified and speculative term “fatal” elsewhere (although inaccurately in regard to certain conditions). As the LDC pointed out in its online comment, “Several clinicians on the LDC raised concerns that the types of fatal diseases contemplated by the whitepaper are conditions that challenge accurate predictions about whether and to what extent a fatally ill patient will tolerate surgery and organ donation at an acceptable or reasonable level, or how adverse an outcome may be.” There may also be a greater than usual need for some type of life support including antibiotics after surgery. Yet the Committee urges the unqualified right to refuse life support after donation (pg. 10) without considering whether the donation should be done if the person does not want the required care in its aftermath. Perhaps the Ethics Committee is justifying its finding of “no impact” based on speculative views that the living donors who are the subjects of the proposal will die anyway. This is not good enough for us.
On top of everything, the Committee leaves it to other committees to work out implementation details. Thus, it is anyone’s guess as to how the proposal would play out in practice. What elements of informed consent would be modified? Would there be separate donor death lists?
The Committee correctly cites the erosion of public trust as a potential harm from its proposal. Trust is the key in getting donors. Why would the Committee want to put the OPTN in a situation where it needs to plan to “mitigate” such harm?
The bottom line is we reject the proposal as written due to its lack of concern with the lives of people with disabilities or health conditions. The way the Committee has defined the problem is so prejudicial that no part of the proposal is salvageable. However, as previously mentioned, we are not opposed to individuals with underlying conditions acting as living donors if they are eager to do so and the donation can be done safely. We encourage the Committee to withdraw its present proposal and submit a new one focused on the criteria for determining when persons with underlying conditions can be accepted as living donors without compromising their present level of health or OPTN standards.
Please contact us with any questions you may have and, above all, create and maintain a system that all of us can trust to value our lives. Thank you for your time and attention.
Diane Coleman, JD, President/CEO
Lisa Blumberg, JD, Consultant
- William J. Peace. “Comfort Care as Denial of Personhood,” Hastings Center Report 42, no. 4, (2012), p. 15 https://www.researchgate.net/publication/229014978_Comfort_Care_as_Denial_of_Personhood
- “It’s not pain but ‘existential distress’ that leads people to assisted suicide, study suggests”, Washington Post, May 26, 2017 (https://www.washingtonpost.com/news/to-your-health/wp/2017/05/24/its-not-pain-but-existential-distress-that-leads-people-to-assisted-suicide-study-suggests/?utm_term=.f155e817ee77); Madeline Li, M.D., Ph.D., “Medical Assistance in Dying — Implementing a Hospital-Based Program in Canada”, N Engl J Med 2017; 376:2082-2May 25, 2017
- Samantha Bresnahan, “He wants to believe: Doctor searching for rare ALS reversals”, CNN, November 30, 2016 (http://www.cnn.com/2016/11/30/health/als-reversals-new-treatment/index.html)