Needed: More Honesty About Death Before Donation

L. Syd M Johnson examines the controversies surrounding death before organ donation and how current organ procurement practices may foster distrust and discourage donation.

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The success of organ transplantation has given rise to a perpetual shortage of lifesaving organs. In the US and Canada, thousands of people die on waiting lists each year because there are never enough organ donors for all the potential recipients. Despite overwhelming public support for organ donation, not everyone opts to be a donor, and not every family consents to posthumous donation. Misconceptions and a lack of accurate information about organ donation account in part for the disparity between support for donation and actual willingness to donate. Current organ procurement practices may foster some of those misconceptions and discourage organ donation.

A central ethical precept for organ donation is the Dead Donor Rule, which requires that persons must be dead before organs and tissues are removed from their bodies. This ensures that living but incapacitated persons are not killed by the removal of their vital organs. In Canada and the United States, there are two possible ways to legally determine death in organ donors: brain death and cardiac death.

Death's Grave Pass, Chiura Obata, Smithsonian American Art Museum

Death’s Grave Pass, Chiura Obata, Smithsonian American Art Museum

Brain dead patients are the source of most cadaver organs because for organs to remain healthy and suitable for transplantation, they must be perfused with blood and oxygen. The hearts of brain dead patients beat spontaneously, even during the removal of organs, so maintaining healthy organs requires only that oxygen and fluids be provided until the organs are procured. Organs become damaged and nonviable soon after circulation stops, so the organs of persons who die of cardiac arrest are usually not suitable for transplantation. There is persistent confusion and misunderstanding amongst the public about brain death, pointing to a need not only for better education, but also more clarity and honesty from the medical community about the difference between brain death and death as it is traditionally understood.

Across cultures and religious traditions, there is wide agreement and acceptance that death occurs when the heart stops. According to most legal criteria for cardiac death, it is the irreversible cessation of cardiac function that defines death. The interval needed to determine when cardiac function has irreversibly stopped is lengthy because some patients can be successfully resuscitated several minutes — even half an hour —  after the heart stops.

In a practice known as Donation After Cardiac Death, life support is withdrawn from an organ donor, death is declared soon after the heart stops, and the organs are quickly harvested.

Like all organ donations, Donation After Cardiac Death is done only with the consent of the patient’s family. The practice is controversial because the length of time before death is declared is determined not by the impossibility of resuscitating the patient, but by the desire to preserve the organs for donation. The length of that interval varies greatly from country to country, province to province, and even between hospitals, resulting in a lack of standardization and uniformity. Moreover, death is declared without a determination that cardiac function has ceased irreversibly, so Donation After Cardiac Death may violate the Dead Donor Rule, because the donor is not dead according to legally accepted standards. While Donation After Cardiac Death increases the number of lifesaving organs available for transplant, it does so by fudging the determination of death. It may not necessarily be ethically wrong to withdraw life support and harvest organs when there is informed family consent; however, the lack of uniform and transparent standards for declaring death before donation creates the perception of medical deception.

The lack of transparency about death before donation erodes public trust in the activities of the medical profession when it comes to organ donation. In surveys, potential donors express the concern that organs could be unethically or prematurely procured, whether intentionally or as a result of mistakes. Others identify doubts about the concept of brain death as a barrier to becoming a willing donor. Non-donors also consistently express the fear that they’ll receive substandard or less aggressive medical treatment, or that their willingness to be an organ donor might result in their premature, preventable death.

These worries are not allayed by organ procurement practices that appear to push ethical boundaries, or rest on definitions of death that are gerrymandered to serve the needs of transplantation. The important goal of increasing organ donation cannot be achieved without addressing the problem of donation resistance caused by a lack of trust. Greater honesty and transparency on the part of the medical community about death before donation would benefit the public — including those waiting for transplants — by instilling confidence in a system that serves the needs of both the living and the dying.

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L. Syd M Johnson is an Assistant Professor of Philosophy & Bioethics at Michigan Technological University @LSydMJohnson

One comment

  1. Sarah Chapple · · Reply

    Thanks for this article – I appreciate that you make the clear distinction between brain death and cardiac death, as well as clarify that a lack of uniform standards is ethically troubling. However, one piece of this issue that I have not seen discussed in any of the recent media is the fact that these patients will typically die whether or not they are organ donors. The determination that a critical illness is not survivable must occur before any discussion of organ donation. The public perception that physicians will not “try as hard to save me” if they are known to be a potential organ donor is patently false, although misinformed media articles and documentaries often further this misconception by presenting cases in which a patient “woke up” and fully recovered from their injuries. I recognize that these cases do occur, but it is extremely infrequent. Presenting this as the norm damages the public perception of organ donation and promotes mistrust between families and physicians in critical care units.

    I agree with you that better information needs to be provided to the public but am uncertain how to best achieve this. What are your suggestions?

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