Linking the "right to die" with organ donation has opened a terrible Pandora's Box.
In the US, whether we are renewing our drivers’ licenses, watching the TV news or just picking up a newspaper, it's impossible to miss the campaign to persuade us to sign an organ donation card. We see story after story about grieving relatives who have been comforted by donating a loved one's organs after a tragic death and grateful people whose lives have been changed by the "gift of life". But in the understandable zeal to save or extend as many lives as possible through organ transplantation, are some ethical boundaries being crossed?
For example, since the early 1990s, a little-known but disturbing revolution has been occurring in organ donation. A new procedure now called “donation after cardiac death" (DCD) has been quietly added to brain death organ donation in more and more hospitals in the United States and in other countries. It was made possible by linking the so-called "right to die" with organ donation. Now, doctors in Belgium are using DCD criteria for determination of death to harvest organs after euthanasia.[i]
What is DCD?
In 1993, a whole issue of the Kennedy Institute of Ethics Journal[ii] was devoted to discussing a new pool of organ donors -- patients who are not brain dead but who are on ventilators and considered hopeless in terms of survival or predicted “quality of life”. In these patients, the patient or family agreed to withdrawal of life support and a do not resuscitate order. The patient was then taken to an operating room where the ventilator was withdrawn. When (or if, see below) the breathing and heartbeat stopped within about 1 hour, doctors waited for usually 2 minutes before then pronouncing cardiac death rather than brain death. The patient’s organs were then harvested for transplant. At that time, this was called non-heart-beating organ donation (NHBD) but since then, some insisted that the term was confusing and the name morphed to donation after cardiac death (DCD). However, since hearts have now been transplanted and thus are obviously not dead, there is a current proposal[iii] to change the name to donation after circulatory death and keep the acronym DCD.
NHBD/DCD was unknown to the American public until 1997 when many viewers were shocked by a report on the influential US television show 60 Minutes that revealed little-known policies called NHBD at some hospitals that would allow taking organs for transplant from persons who could be, in narrator Mike Wallace's words, "not quite dead".
The 60 Minutes story explored the possibility that these NHBD policies were allowing doctors to discontinue life support, administer possibly harmful medications to some potentially salvageable patients and harvest these patients’ organs for transplants using cardiac rather than brain death criteria. At the program's end Wallace predicted that as a result of the broadcast the practice of NHBD (DCD) was unlikely to continue. But he was wrong.
This TV show caused a temporary firestorm of controversy, leading to a drop in organ donations and eliciting strong criticism of the 60 Minutes story by some transplant organizations. As a result, the Institute of Medicine (IOM) was asked to assess the NHBD/DCD policy. This resulted in two reports in 1997[iv] and 2000[v] supporting NHBD/DCD with certain guidelines. The first report did not condemn the practice but instead made recommendations such as waiting 5 minutes before harvesting organs after breathing and heartbeat stops and this report virtually extinguished media and thus public interest in the topic.
However, the second report showed that many -- if not most -- of the recommendations were not being routinely followed. The second IOM report even admitted that opinion was divided on the option of NHBD for the patient who is ventilator dependent but conscious and who wants to stop life-sustaining treatment.
A later 2009 report, Controversies in the Determination of Death: A White Paper by the President’s Council on Bioethics [vi], reexamined both brain death and NHBD/DCD and made many alarming discoveries about the practice of organ donation such as wait intervals as short as 75 seconds before harvesting organs in some DCD cases but, in the end, both criteria for organ donation were supported and encouraged. Thus, controversies about organ donation have been virtually limited to bioethics and transplant groups -- until recently.
However, in March, 2011, the boundaries of NHBD/DCD organ donation were pushed even farther by a proposal by the Organ Procurement and Transplantation Network (US) to mandate rule changes on DCD. Titled, "Proposal to Update and Clarify Language in the DCD Model Elements. Affected/ Proposed Bylaw"[vii], one important change would allow DCD for non-brain injured patients on ventilators with “end-stage musculoskeletal disease, pulmonary disease or upper spinal cord injury” who consent to donation. Gone is the requirement of an “assessment to determine whether death is likely to occur (after withdrawal of life support) within a timeframe necessary for organ donation” because “there is no industry standard that allows for a true assessment of the likelihood of death within a specific time frame. Each hospital establishes its own timeframe for organ acceptability. "[viii] These are just two of the proposed changes.
Although this proposal was open for public comment until June, 2011, it went unnoticed until a September 19, 2011 Washington Post article “Changes in controversial organ donation method stir fears”[ix] was published and the controversy over NHBD/DCD erupted again.
But while ethicists quibble about technicalities with NHBD/DCD, crucial questions are not being raised: Is the “dead donor rule” that transplant experts are supposed to follow being corrupted by new determinations of death? How do doctors determine who is a “hopeless enough” patient who will die fast enough to get usable organs?
For example, at least 20 per cent of NHBD/DCD donors do not die fast enough after withdrawal of a ventilator to have usable organs[x] and are just returned to their rooms to die without further treatment. Doctors writing in the prestigious Journal of Intensive Care Medicine concluded that “There is little evidence to support that the DCD practice complies with the dead donor rule.”[xi] The dead donor rule is an ethical norm that states that the donor must be dead before organs are harvested and the harvesting itself must not cause the death of the donor.[xii]
In addition, a determination of brain death that was the past standard for most organ donations is considered unnecessary for NHBD/DCD even though one of the strongest promoters of the DCD protocol, Dr. Michael DeVita, has admitted, "the possibility of [brain function] recovery exists for at least 15 minutes". Nevertheless, Dr. DeVita defended waiting only 2 minutes before organ harvesting because he maintains that the person is unconscious and, as he writes, "the 2-minute time span probably fits with the layperson's conception of how death ought to be determined".[xiii] In contrast, those of us with the responsibility to declare death, are cautioned to take ample time in determining death even in hospice patients lest death be declared too soon.
Additionally, a 2003 article in the New England Journal of Medicine illustrated a disturbing lack of objective medical standards for withdrawal of ventilators.[xiv] This article admitted that no study was done to "validate physician predictions of patients’ future functional status and cognitive function", and the researchers did not ask doctors to ''justify their predictions of the likelihood of death or future function".
With such subjective standards being used for withdrawal of ventilators, it should not be surprising that many potential NHBD/DCD procedures will not even result in a transplant because the patient will continue to breathe and have a heartbeat for longer than the usual one hour time limit.
Most recently, an August 2011 article in the Internal Medicine News Digital Network[xv] cited a Canadian Medical Association Journal study on traumatic brain injury revealing that most of these patients’ deaths in ICU “stemmed directly from withdrawal of life-sustaining therapy, including 64 per cent of patients who died within 3 days of admission to an ICU." (Emphasis added) The authors of the study concluded: "Our study highlights the need for high-quality research to better inform decisions to stop life-sustaining treatments for these patients." Such decisions could be a lethal mistake because these kinds of patients are often considered some of the best potential NHBD/DCD organ donors.
For example, a September 6, 2011 segment of US television’s Today show featured an interview with Shelli Eldredge, a young mother who was comatose after a traumatic brain injury after an accident in June.[xvi] One doctor recommended stopping life support. But despite a brain injury that Dr. Eldredge, Shelli’s husband, also believed was medically impossible to recover from, Dr. Eldredge wouldn’t give up. After a month, Mrs. Eldredge woke up and started speaking. Three months later, she was giving this interview alert, articulate and working towards a full recovery.
In 2003, the newspaper of the Archdiocese of St. Louis, the St. Louis Review, published an editorial[xvii] calling for a moratorium and re-evaluation of NHBD/DCD for St. Louis hospitals, a recommendation widely criticized and then ignored. Now we have doctors in Belgium using lethal injections instead of withdrawing ventilators in NHBD/DCD protocols to harvest organs after euthanasia and the Ethics Committee of Eurotransplant even formulating recommendations on organ donation after euthanasia.[xviii]
Linking the so-called "right to die" with organ donation, as NHBD/DCD does, has truly opened a terrible Pandora's Box. Unfortunately, choice rather than principle is becoming the overriding ethic.
While organ donation can be a gift of life and a worthy goal, a civilized society must not allow the deaths of some people to be manipulated to obtain organs for others. We must demand transparency from organ transplant organizations and insist on public input for the protection of both the public and our health care systems. At the same time, we also must work tirelessly for universal laws against assisted suicide and euthanasia before organ donation after euthanasia becomes yet another excuse for medically induced death.
[iv] Non-Heart-Beating Organ Transplantation: Medical and Ethical Issues in Procurement (1997), Institute of Medicine, National Academy Press. Available online at http://www.nap.edu/openbook.php?record_id=6036
[v] Non-Heart-Beating Organ Transplantation: Practice and Protocols (2000), Institute of Medicine, National Academy Press. Available online at: http://www.nap.edu/openbook.php?isbn=0309066417
[vi] Controversies in the Determination of Death: a White Paper” by the President’s Council on Bioethics, The President’s Council on Bioethics. Washington, DC: January 2009. Available online at: www.bioethics.gov/reports/death/index.html
[ix] “Changes in controversial organ donation method stir fears” by Rob Stein. Washington Post, September 19, 2011. Online at: http://www.washingtonpost.com/national/health-science/changes-in-controversial-organ-donation-method-stir-fears/2011/09/15/gIQAlY9agK_story.html
[x] “Organ Procurement after Cardiocirculatory Death: A Critical Analysis”, Mohamed Y. Rady, MD, PhD, Joseph L. Verheijde, PhD, MBA, and Joan McGregor, PhD. Journal of Intensive Care Medicine. September/October 2008, available online at http://jic.sagepub.com/cgi/reprint/23/5/303.pdf
[xii] “Is Organ Procurement Causing the Death of Patients?” By James Dubois, 18 Issues L. & Med. 21 (2002-2003), cited in “Dead Donor Rule Definition”. Online at: http://www.duhaime.org/LegalDictionary/D/DeadDonorRule.aspx
[xiii] "The Death Watch: Certifying Death Using Cardiac Criteria" by Michael A. DeVita, MD, University of Pittsburgh Medical Center, Pittsburgh, Pa. Prog. Transplant 11(1):58-66, 2001. © 2001 North American Transplant Coordinators Organization
[xiv] "Withdrawal of Mechanical Ventilation in Anticipation of Death in the Intensive Care Unit" by Deborah Cook, M.D., et al. New England Journal of Medicine, Volume 349:1123-1132, September 18, 2003, Number 12. Abstract available online at: http://content.nejm.org/cgi/content/short/349/12/1123
[xv] "Support Withdrawal Causes Most Deaths after TBI (traumatic brain injury)" by Mary Ann Moon, Internal Medicine News Digital Network. August 29, 2011. online at: http://www.internalmedicinenews.com/news/neurology/single-article/support-withdrawal-causes-most-deaths-after-tbi/f3409f41da.html
[xvi] “Mom defies the odds after devastating accident” By Lisa Flam. MSNBC.com online at: http://today.msnbc.msn.com/id/44408465/ns/today-today_health/t/mom-defies-odds-after-devastating-accident/
[xviii] Report of the Board and central office of Stichting Eurotransplant International Foundation. 1.5 Recommendations approved: Ethics Committee. In: Oosterlee A, Rahmel A, eds. Annual Report 2008 of the Eurotransplant International Foundation. Eurotransplant International Foundation, Leiden, the Netherlands, 2008. p. 24, cited as footnote 22 in “Initial Experience with Transplantation of lungs recovered from Donors after Euthanasia" by D. Van Raemdonck , et al. Applied Cardiopulmonary Pathophysiology 15: 38-48, 2011.online at: http://www.applied-cardiopulmonary-pathophysiology.com/fileadmin/downloads/acp-2011-1_20110329/05_vanraemdonck.pdf