Not Dead Yet Letter to Organ Procurement and Transplantation Network to Comment on Bylaws Plain Language Rewrite


August 28, 2012


John R. Lake, M.D.


Board of Directors

Organ Procurement and Transplantation Network/United Network on Organ Sharing

700 North 4th Street

Richmond, VA  23218


Dear Dr. Lake:

I am writing as President and CEO of Not Dead Yet, a national disability rights organization.  Not Dead Yet’s primary goals are to oppose legalization of assisted suicide from a secular disability rights perspective and to oppose various forms of nonconsensual withholding of life-sustaining treatment from people with disabilities.  The purpose of this letter is to provide comments on the proposed “Plain Language Rewrite” of OPTN/UNOS Bylaws.

The Bylaws rewrite has been made available for public comment from July 2 through August 31, 2012.  It includes provisions that relate to organ procurement in the context of donation after cardiac (or circulatory) death (DCD), among others.  Not Dead Yet submitted comments on June 14 pertaining to proposed DCD Model Elements.

Our previous comments addressed the following concerns:

  • OPTN/UNOS Failure to Acknowledge and Outreach to Affected Groups
  • Addition of the Term “Disease” Handled in a Misleading Manner
  • OPTN/UNOS Failure to Restore the Ethical Safeguard of Separation Between Organ Procurement and Decision to Withdraw Life-Sustaining Treatment
  • Incorrect Language Suggesting That Next of Kin May Overrule Patient or Designated Agent
  • Violations of Civil and Constitutional Rights of People With Disabilities
  • Failure to Provide Safeguards for Conscious Individuals who are potential donors

The majority of our concerns focus on the potentially harmful impact of organ procurement activities on people with disabilities who depend on a ventilator due to a new injury or an exacerbation in their disabling condition.  In either situation, the individual and/or their family are facing decisions about the use of a ventilator, often at a time of great uncertainty about the individual’s prognosis and the real life practical realities that lie ahead.  This is not the time for the life saving benefits of organ donation to be extolled.

Following our submission of these comments, I came across an article in Virtual Mentor, the AMA Journal of Ethics, by Dr. Joseph Fins, a neurologist who is generally considered the leading authority on brain injury and consciousness.  Dr. Fins is also a member of the Board of the Hastings Center, a leading bioethics center in the U.S.

Dr. Fins article, a copy of which is included with this comment, contained the disturbing information that he felt compelled to resign from the Board of an organ procurement organization because of repeated family member complaints about overly aggressive organ procurement activities.  Here is the key passage:

My problem as an OPO board member was that, too often, patients like these were viewed as if they were destined or compelled to die. They were seen as organ donors even before their organs had outlasted a viable body—and brain. As an ethics consultant at an academic medical center, I had seen OPO representatives hover in an ICU, waiting to sweep in—as some intensivists have described it to me—and collect what they viewed as rightly theirs—organs that would have a salutary effect on another human being.

I use the word “hover” deliberately, if a bit provocatively, because that is how families of many brain injury patients viewed it. I know this from interviews with more than 40 families, each with a member who had a disorder of consciousness, who came to Weill Cornell Medical College for enrollment in neuroimaging and EEG studies designed to elucidate mechanisms of recovery. While they were here, we conducted extensive interviews with patients’ surrogates about their experiences with the care system as they made their journey from acute injury on through rehabilitation and chronic care.

One of the most powerful scenes, often repeated, occurs early in the course of care, when patients are still in the ICU: surrogates are approached for organ donation. After the patients survive and recover to varying degrees of function, these families still resent what is often described as the predatory behavior of OPO representatives. Many families report zealous attempts at procurement and a near-certainty about their loved one’s prognosis: death was inevitable, ventilators should be withdrawn, and organs should be redirected for some greater good. But with valuable hindsight, families later ask, how did they know? And how could they have been so wrong, both medically and perhaps ethically?

J Fins, Severe Brain Injury and Organ Solicitation: A Call for Temperance, Virtual Mentor. March 2012, Volume 14, Number 3: 221-226.

I also came across the minutes of the OPTN/UNOS Ethics Committee meeting held June 25-26, 2012, which specifically stated, “The Ethics Committee does not agree with the OPO approaching the family prior to decision to withdraw treatment or support.”

These two documents both add weight to the concerns expressed in our previous comments.  Nothing in the plain language rewrite or otherwise indicates that OPTN/UNOS has attempted to address our concerns, or those of authorities cited in our previous comments or this letter, pertaining to improper and aggressive organ procurement activities.

The fact that mainstream authorities like Arthur Caplan and Joseph Fins say that there’s a problem with OPO activities should be enough to establish the ethical urgency of developing protocols which push back this disturbing type of activity and clarify appropriate OPO behavior.

The last thing that OPTN/UNOS should have done is write rules that tacitly approve current bad practices.  Unfortunately, that appears to be what OPTN/UNOS set out to do, according to the March 2012 request for public comment: “In 2009, the OPTN Board of Directors charged the OPO Committee and Organ Availability Committee with the goal of reviewing DCD policies to determine if they were consistent with current practice.”

Moreover, these are not merely ethical concerns that OPTN/UNOS has the option to address or disregard.  DCD requirements have a direct impact on people with disabilities.  DCD requirements which allow improper organ procurement activities may have the ultimate life-or-death impact on people with disabilities by influencing the individual’s or families’ decision to withdraw life-sustaining treatment.  Such protocols must comply with the nondiscrimination requirements of the Americans with Disabilities Act and Section 504 of the Rehabilitation Act of 1973.  The evidence suggests that the proposed DCD requirements and related bylaws are not in compliance with these laws and should be rejected by the U.S. Department of Health and Human Services.

We urge OPTN/UNOS to carefully consider all comments and related materials on the DCD requirements and begin a process to address the problems brought to light.

If there are any questions concerning these comments, please don’t hesitate to contact me at or 708-420-0539.



Diane Coleman, J.D.


Not Dead Yet

497 State Street

Rochester, NY  14608

(585) 697-1640