Needed: Better Guidelines for Defining Death

Jacquelyn Shaw contests a number of claims made by Sarah Chapple in her recent critique of the CBC The Fifth Estate documentary Dead Enough.

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As Ms. Chapple indicates, organ donation is a wonderful, generous act. Yet this emotional context should not blind us to all else. Organ donation is best encouraged by providing accurate information and by ensuring effective legal protection for the safety of prospective donors. Although well-intentioned, Ms. Chapple’s commentary contains numerous inaccuracies, as well as outdated and confusing information.

She writes: “Although miraculous recoveries can occur, these are extremely infrequent.” Unfortunately, there is no way to know how frequent or infrequent such “recoveries” are. If and when death misdiagnoses occur, their discovery is unlikely, being masked by life-support withdrawal or organ harvesting which may occur shortly after ‘death’ has been declared. These acts create a self-fulfilling prophecy – removing oxygen or vital organs renders the individuals dead, if they were not before. So Ms Chapple’s “extremely infrequent” miraculous recoveries are better characterized as extremely infrequent discoveries of death misdiagnoses—we have no way of knowing what percentage of the iceberg these discoveries represent.

Pitstone Windmill by Rob Farrow

Pitstone Windmill by Rob Farrow

“There is a nation-wide criterion for the testing, determination and diagnosis of brain death in Canada that was published by the Canadian Congress of Neurological Sciences in 1986.” The 1986 guidelines Ms. Chapple cites stipulate that brain death can only be declared if the entire brain—both the cortex and the brainstem—is destroyed. The guidelines for the determination of brain death have since been updated, however, by the former Canadian Council for Donation and Transplantation (CCDT) ‘Severe Brain Death to the Neurological Determination of Death’ (2003) and ‘Brain Blood Flow in the Neurological Determination of Death’ (2006). These documents redefine death as brainstem death. That is, an individual may be declared dead when the brainstem is destroyed, while the cortex—responsible for reasoning, personality, sensation etc.—may be perfectly functional. In its shift to brainstem death, the CCDT departed sharply from four decades of Canadian and general worldwide practice, while it also removed a number of long-standing safeguards used in brain death assessment such as wait periods for barbiturate clearance or between sequential tests. The older guidelines Ms Chapple cites reflect the pre-CCDT picture where brain death can be declared only if the entire brain—both cortex and brainstem—is destroyed. Thus, her source above contradicts her later brain death definition.

A national, multidisciplinary, year-long discussion occurred in Canada in 2005 to address the ethical issues associated with organ donation after cardiac death.” Indeed, a discussion of donation after cardiocirculatory death (DCD) was undertaken in Canada in 2005 by the CCDT. At that time, one member of the Council, Dr Christopher Doig, resigned over ethical concerns with the new recommendations (published in 2006). Inexplicably, in support of the claim about a national discussion of DCD, Ms Chapple does not link to the CCDT’s recommendations on DCD, but instead attaches an article by Dr Allister Browne. Browne was not part of the formal national discussion aimed at addressing and resolving ethical concerns with DCD, and in his article he shows grave concern regarding the CCDT’s treatment ofissues related to the use of DCD criteria. He concludes: “From an ethical viewpoint, the CCDT’s recommendations for DCD are highly problematic with regard to defining death and obtaining consent. Centres planning to set up DCD programs that will satisfy ethical requirements will thus have to modify the CCDT’s recommendations.” Ms. Chapple makes no mention of this conclusion.

There is, however, some room for improvement…, as half the respondents also felt confused about brain death and may have felt rushed into making decisions.” Contrary to Ms. Chapple’s intimation, the negative reports of half of the respondents who felt confused or rushed into a premature decision is no minor lapse, signalling only “room for improvement”! Patient autonomy and informed consent are the legal bedrock required for medical procedures to occur in Canada. Without informed consent, legally, a battery has been inflicted. Confusion and rushed decision-making suggests a very serious deviation from informed consent requirements.

“Organ donation can help [families] to cope with their grief over a sudden loss.” Perhaps this statement is true, but to encourage more donors, we need a different, more open and informative approach to communicating about death and organ donation – one that ensures valid informed consent. Moreover, encouraging donor selflessness is justifiable only if the prospective donor can be assured that his or her interests are being effectively protected by the law—through rules about donor safety, to which there is scrupulous adherence in all cases. From my perspective, the CCDT brain death guidelines are not safe in the sense that elements of those guidelines (like allowing testing with barbiturates in the system, or not retesting after a sufficient wait period) have the potential to declare people dead when they may just have reversible conditions.

At present, periodic “miraculous recoveries” are red flags that should draw our attention to the fact that these two conditions (safe rules for the determination of death and scrupulous adherence to these rules)are not always being met (though it is unclear how often this is the case). At minimum, better training, oversight, and the implementation of safe guidelines are imperative, if we are serious about improving Canada’s organ donation rate.

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Jacquelyn Shaw is a researcher/writer and NTE alumna with graduate training in both law and medical science.

One comment

  1. Sarah Chapple · · Reply

    Thanks for taking the time to respond to my piece. The point of my article was to provide another view of the organ donation process based on my professional experience, not to critique the guidelines. I agree with your point that clear and safe guidelines are essential, but this was not the primary purpose of my article. Your statements about “miraculous recoveries” implying “infrequent discoveries of death misdiagnoses” leads the public to believe that doctors frequently misdiagnose these patients and are often incorrect when they state there is no hope of recovery. The organ donation issue aside, I have yet to work with a physician who does not take their work and this responsibility extremely seriously and such misrepresentation is disrespectful to these professionals and the work they do. The statement about informed consent being needed and physicians inflicting “battery” on patients due to rushed decision-making is ill-informed and inaccurate as it implies these physicians are breaking the law on a regular basis. The very nature of critical care is urgent and emergent, meaning decisions are often quick, but this does not mean they are made without appropriate information and informed consent. Physicians provide the most available accurate information, but as most families are under a great deal of stress and have often not eaten or slept, it stands to reason that most people would feel rushed and under pressure when providing consent under these circumstances. I would be interested to hear your suggestions about how we could improve this process.

    Many people I spoke with who saw the program “Dead Enough” took away from it that physicians are “killing” patients so they can “take their organs” and that they themselves would not consent to organ donation after viewing the program. “Dead Enough” contained outdated and incorrect information and much of it was not at all reflective of my professional experience working with hundreds of patients and families in critical care. You state above that we need an open and informed approach to ensure informed consent, which implies this is not presently occurring. Critiquing the guidelines and critiquing the communication processes are not the same. This is unfortunate and the reason why I wrote my article. I have seen firsthand how organ donation can help families to deal with their grief and to honour the wishes of their loved one. However, my role as a critical care social worker is not to promote organ donation. My role is to promote the best decision for each patient and their family and to support them through whatever decisions they make. I thank you for taking the time to contribute your thoughts to this discussion.

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