Code Silver and ethical duties to care and protectFebruary 23, 2017
Advance Requests for Medical Aid in DyingJanuary 14, 2019
Taquisha McKitty, the woman at the centre of legal challenges concerning the definition of death died (or maybe died again) on December 31st 2018. Taquisha died, or was declared brain dead, in September of 2017 after a drug overdose. A death certificate was issued on September 20th 2017. The next day an emergency injunction was issued ordering Taquisha to be kept on “life support.” (All of the concepts here are contested, and any method used to describe the events contains assumptions and begs other questions. How can it be “life support” if there is no longer a person with life to support? Life of a person or life of a body? It should also be acknowledged that at the centre of this story is a family grieving their loss. We may come at this to try to understand the concepts and values that are at play but it is not our hearts that are broken.)
The court case dragged on until June of 2018 when a decision was released by the Ontario Superior Court of Justice which ruled that Taquisha was dead (and had been since September 2017) and ordered her removed from life support within 30 days. That decision was appealed and Taquisha (or Taquisha’s body?) remained on life support until her heart stopped beating on December 31st 2018.
There is a great deal at stake here. When does a person die? Who decides? And how? What sort of a concept is personal death anyway?
Perhaps we should say something about the meaning, or possible meanings, of death first. First, from the individual’s perspective, my death marks the end of me. Now, this, of course, raises a slew of questions about what I might mean by “me.” What is it to be a person and what is it for a person to “end?” I think of my self as a self – a thing that thinks, reflects, acts, hopes, fears, loves, desires, plans, remembers and so on. I think of myself as extending back through time, to my younger adulthood, childhood, back to the time when I was born, to a particular mum at a particular time. I think of myself as an agent able to make choices and exhibit preferences. I think of my future self, with plans for tomorrow, hopes for the future and so on until I eventually end. I think of myself in relation to others, my family, friends and community. And I think of all of that as somehow continuous, and all of it will end with my death.
But this is not the only view. On some religious views the body is a physical, temporary, corporeal housing for what is the essential self: the soul. There are varieties of this belief, but the general idea is that the essential element of a person resides in the soul which inhabits a body in the physical world on a temporary basis. The soul might be eternal – existing timelessly before physical birth then inhabiting a body through that body’s lifetime then departing the body at death to continue existing eternally elsewhere. On this account the significant part of a person never really dies, merely gets translated from one form to another.
Death is significant not just to the one who has died of course, but also to those around. Death triggers loss and absence, grief and mourning.
There are significant practical and legal issues too. Instead of looking after a person there is a body to be dealt with, a will to be read, a pension to be ceased or an insurance claim made. In health care there is no longer a patient but rather a corpse. There may be treatments to be stopped, life support to be removed and organs to be retrieved.
It used to be quite simple. You died when your heart stopped beating and you stopped breathing and typically those events occurred at pretty much the same time. The test was suitably simple too, you check for a pulse or look for signs of breath. And that was pretty much it. Death was final, irreversible and there was no real room for dispute. On the soul account of the person this is when the soul leaves (or prepares to leave) the body. (There are different traditions about when the soul leaves the body.)
But the simple story has changed. Medical technological advances created a gap between lack of a heartbeat, or breathing and death. (What do we say of a person undergoing a heart transplant – does that person “die” on the table only to be resurrected later – or is the person alive throughout – but only absent a heartbeat for a while? What should we say about the person kept “alive” on live support, even though there may be no brain activity?) In the 60’s developing technology led to a Harvard Medical Committee that began looking at brain activity – or lack thereof, as a marker of death. In 1981 the President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioural Research published its report: Defining Death.
The cover graphic for this report is instructive
The report is clearly trying to answer, or solve, philosophical or religious problems with science.
The Report introduced and promoted a “total brain” standard of death.
- 1. [Determination of Death.] An individual who has sustained either (1) irreversible cessation of circulatory and respiratory functions, or (2) irreversible cessation of all functions of the entire brain, including the brain stem, is dead. A determination of death must be made in accordance with accepted medical standards (p.73)
The intention was to create a definition of death that could be incorporated into law in each of the US States. While that has not happened there is widespread acceptance that death has occurred if all functions of the entire brain have irreversibly ceased.
Before we look at some of the components of this definition the words “is dead” are interesting. The Commission states:
“Is Dead”: Most of the model statutes previously proposed state that a person meeting the statutory standards “will [or shall] be considered dead.” This formulation, although probably effective in achieving the desired clarification of the place of “brain death” in the law, is somewhat disconcerting since it might be read to indicate that the law will consider someone dead who by some other, perhaps wiser, standard is not dead. (p76)
I would say this is somewhat disingenuous. The Commission is exactly trying to formulate what should count as dead (or dead enough). Rather than acknowledging that our pre-scientific medical conception of “dead” and the methods of testing for it are inadequate in changed circumstances and that we therefore need a new stipulation, it in effect simply says that our conception of “dead” meant “brain dead all along, we just didn’t know it.
The Commission spent a great deal of energy stressing the connection between brain, lungs and heart. It argues that the cessation of cardiac and respiratory function were adequate or sufficient for declaring death because they indicated the irreversible cessation of brain function. They are sufficient but not necessary. Sufficient, because without the heart and lungs the brain cannot function. But not necessary because the brain can cease to function while the heart and lungs are maintained artificially.
The Commission also considered definitions of death that distinguished between “higher” and “lower” brain function. Roughly, the “lower” brain refers to those parts of the brain that regulate bodily functions – such as breathing while “higher” refers to the parts of the brain that govern cognitive functions. Again, the concepts of necessity and sufficiency are useful. If the lower brain ceases to function the higher brain functions will cease too. So, the cessation of function of the lower brain is sufficient for death. Behind that is lurking the idea that if we are concerned with death of a “person” then it is really the cessation of the higher functions of the brain that is actually most at stake.
Fast forward to now. There is a patchwork of statutes by state in the US and no legislation in Ontario that defines death. Interestingly, the State of New Jersey specifically requires the accommodation of religious beliefs in the determination of death. This has led to the case of Jahi McMath who was declared brain dead in California in 2014 but who remains connected to a ventilator in a New Jersey apartment. In a Harvard Medical School conference on Defining Death in April 2018 the philosophers Lainie Ross and Robert Veatch argued that death is not merely a scientific concept but rather a philosophical and religious puzzle without a clear answer. They argue for pluralistic choice in the definition of death, from cardio-respiratory, through whole brain, to higher brain definitions.
In Ontario the judgment under appeal in the McKitty case was firmly on the side of current practice.
Justice Shaw in June of 2018:
If the definition of death is to be amended as proposed by the applicant, it would be contrary to the existing common law definition of death as found in Canada (see Leclerc), United States, and the UK, which have all found that the legal definition of death includes brain death. There are no decisions known to this court where the definition of death does not include brain death or have found that an individual can choose not to be declared dead on the basis that physiological or biological function of a body constitutes life.
 The applicant is proposing a radical and significant change to the definition of death and, in essence, the concept of life. It is not the role of this court to engage in a social policy analysis that engages significant bioethical and philosophical considerations regarding the recognition of physiological functioning of the body as life.
 There are also policy issues that would have to be considered which are beyond the role of this court. For example, according to Dr. Baker and Dr. Truog, given medical technology, a body can be maintained for an indefinite period of time after a declaration of brain death. That could have a significant financial impact on the health care system if a body that is biologically or physiologically functioning is to be maintained on mechanical ventilation until such time as the heart stops beating, at the request of the individual or their family, based on their personal values and beliefs. There could also be an indirect impact on those who require medical services or treatment if staffing and medical resources are required to maintain those who believe that a biologically functioning body is life. Lastly, there could also be adverse consequences to the organ donation system in Canada. Although no evidence was led regarding any possible impact on the organ donation system, a reasonable conclusion is that if more individuals are maintained on mechanical ventilation beyond the determination of brain death, there could be fewer possible donors. This ripple effect of consequences flowing from a recognition of biological functioning as life requires careful consideration by the legislature.
 Furthermore, if a choice can be made that a physiologically functioning body must be maintained on mechanical ventilation, do medical services have to extend to providing other interventions to maintain that functioning body? For example, if Ms. McKitty’s kidney function fails, will dialysis be required? Should she be treated with antibiotics to fight infection? If her bowels fail, should there be interventions to provide her with a colostomy for so long as her heart is beating? If her heart stops beating, is medical intervention required to attempt to restart the heart? What medical services and to what extent must those services be provided to maintain a physiologically functioning body if that is considered life? These are all issues that cannot be resolved by this court but are best dealt with by the government which is well-suited to address such policy issues. Unlike the court, legislatures are better able to determine questions with many diverse input factors that affect a variety of constituencies in the decision-making process.
131] There is no basis for this court to deviate from the recognition in the jurisprudence and legislation from other jurisdictions that the medical and legal definition of death includes brain death. Furthermore, the medical determination of death cannot be subject to an individual’s values and beliefs. Death, as in the diagnosis of any other medical condition, is a finding of fact. To import subjectivity to the definition of death would result in a lack of objectivity, certainty and clarity. Such subjectivity could lead to an unacceptable level of medical, legal and societal uncertainty as well as potential adverse impacts on the health care and organ donation system.
With the second death of Taquisha McKitty these issues remain unresolved. I would put some of the puzzles like this:
The interests (best interest) of the person concerned.
At the point at which a person is declared brain dead that person has no remaining interests. At this point the person cannot feel or experience, or think anything, so whether that person’s heart stops now, keeps beating for a while longer, or whether that person’s heart would keep beating for a long while longer it makes no difference to the person concerned. A person is only declared brain dead if the brain damage is irreversible so there is no possible hope for recovery.
There remains, however, a question about a person’s hopes, wishes or instructions, made while capable, which could come into affect around death, when the person is incapable. This is one of the issues raised by the McKitty family. They argued that Taquisha’s religious beliefs entailed that she would not be dead until her heart stopped beating. (This position is held by some Orthodox Jews, some Muslims, some Indigenous religious traditions and some Christians. But, the general concept of respect for persons would give the same weight to such a belief if it was grounded in a personal world view or a religious belief.) Should those views be accommodated as they are in New Jersey? Justice Shaw can avoid those questions, because, as Taquisha is dead (brain dead since September 2017) there is no “person” to whom the Charter could apply, and no patient who could be the subject of a judgment by the Ontario Consent and Capacity Board. But the idea of accommodation of differing views is interesting, if an accommodation is possible for those who reject brain death criteria in favour of cardiac death, could a similar accommodation be made for those who believe that a “person” dies when his or her higher brain functions cease?
Health care related practical considerations
There is a history of public distrust of medical judgments concerning death. In the nineteenth century multiple contraptions were developed to allow people who were prematurely pronounced dead – and buried, to signal their survival. That distrust was present then even for judgments based on cardiac and respiratory evidence, lack of a pulse and no breathing. That a similar distrust exists amongst some people for judgments based on an assessment of brain function – while there is still a pulse and while the chests expands and contracts rhythmically, is perhaps not a surprise. The deeper question really concerns whether the medical scientists have understood death correctly. That is, is there a scientific answer to a philosophical or religious question?
Cost of health care, and whether that cost is justified is a taboo subject. In a publicly funded health care system the costs of care are borne by all of us. The average cost per day of ICU care is around $3000. In Taquisha McKitty’s case she received ICU care for more than a year since her first declaration of death – so care, in excess of a million dollars, for her body. If accommodation of personal beliefs concerning the moment of death were permitted there could be many people who would wish to have their bodies maintained in this way. The costs are not abstract numbers. The resources used in this way are resources that are not available to be used elsewhere in ways that could genuinely improve people’s lives. (I have argued this point previously in discussions of the Rasouli case.)
The issue of death and transplantation raises other puzzles. Because organs deteriorate while a patient is on life support waiting until he or she can be declared brain dead, the Trillium Gift of Life Foundation began to permit donation after cardiac death in 2005. The intention was to make more organs available for transplant. This means that a patient who is still alive (not brain dead) but on life support can have the ventilator turned off. The patient then dies – the heart stops beating and the organs can be retrieved. But how long should you wait after the ventilator is turned off to see if the patient’s heart spontaneously starts to beat again? The longer you wait the more the organs deteriorate – the very thing you were trying to avoid in the first place. National guidelines published in the CMAJ in 2006 say wait 5 minutes. Why 5?
When this issue was being discussed, before these guidelines were published, one Ontario transplant centre opted for 3 – at the same time another Ontario transplant centre included in their policy the words: “in order to ensure the “moral certainty of death” wait 9 minutes…” Some Australian guidelines suggest 2 minutes. How dead is dead enough for organ retrieval for transplant? The personal choice issue is relevant here too. If I, or my family are seeking to find some meaning from my death by donating my organs for transplant why would I wish anyone to wait at all? It is the height of cruelty to deny someone the ability to donate because his or her heart started beating again at minute 4 leading to a lingering death as the organs deteriorate to the point that they cannot be used.
A sharp bright line
We often think of death as a sharp bright line, that clearly separates the living person from the dead and then decaying corpse. Our moral, religious, social and legal structures work this way. Rights and respect for persons attach to the living human being, care for the body and grief are appropriate for the corpse and the person that was. But perhaps, despite the best efforts of science and the medical profession, and despite the structure of the law, the reality of death may well be far less clear. Instead of an abrupt transition from the living person to the decaying corpse there may be something far more akin to a journey, from the fully functioning complete person through various forms of diminished physical and mental capacity, through loss of personhood, minimally conscious states and persistent vegetative states to neurological or cardiac death. We need methods of marking those stages, and richer ways of thinking, feeling and talking about people in those states. We also need to think far more clearly about what we, as individuals and as a community owe people throughout their journeys.
What really matters (to me)
I will speak personally here, I have no brief to speak for anyone else. What matters to me – as Rob, is my sense of who I am as a person. It matters to me that I can think (argue), reflect, make choices, love, feel, hope and so on. It is clear to me that this sense of myself could be lost – irretrievably well before either my heart stops beating or my brain stops working. That is, as far as I am concerned my person could die well before my body. This idea gets expressed through a person’s right to refuse life sustaining treatment and it is behind the push to extend Medical Aid in Dying through advance requests. Ultimately, what really matters is that we live our lives to our fullest capacity, because our lives are short, and then we die.
(See Blog Advance requests for MAID)