Medical Assistance in Dying is a Responsibility for the Patient

BY James Madden

The debate around MAiD (medical assistance in dying, a general term that encompasses practices such as euthanasia and physician-assisted suicide) represents a uniquely modern ethical standpoint that has emerged from centuries of practical considerations surrounding death. In ancient times, “dying” was thought of as a community endeavour taking place after one had biologically died[1], in contrast to modern times, where we predict and prepare for death independently, before our biological death. Such a dying process, particularly in a medical setting, can be extraordinarily isolating, and can invoke feelings of shame[2] within those we ought to care for. MAiD is being debated in a culture that does not fully appreciate the origins of its dying practices, and therefore inadequately serves some of its most vulnerable.

The dying process taking place after one’s biological death is a strange idea, but it is widely historically recorded nonetheless. Arguably until the early Middle Ages, societies were faced with unpredictable patterns of death; predation or accidental injury being the most common, meaning they were unable to prepare. The human desire for a meaningful death left the dying process to the community; the body had to be treated and buried, with necessary preparations for the after-world journey. Consider the cross-cultural practices of burying the dead with weaponry, protective spiritual icons, or precious metals: exemplified by the artefacts in Tutankhamun’s tomb[3]. In this way, pre-modern societies conceptualized the process of dying (that is, the transference of states between a fully active living member of the community and an equally autonomous agent in the afterworld) as something that happened after they had biologically died; their spirit and its otherworld journey was the responsibility of the community.

As history progressed, causes of death became more predictable, and medical prognostication became more accurate; people learned to prepare for death by generating wills and seeking spiritual relief. The dying process began before one’s biological death, with ever greater emphasis on the dying person’s responsibility to prepare properly; in contrast to Stone-Age societies (and other pre-agrarian, nomadic hunter-gatherer societies), the predictability of the modern urban death meant the transference of roles began while the person was still alive, and over time became more and more their responsibility, particularly as human societies settled down and began farming. A sociological examination of the AIDS epidemic of the 1980s can reveal that the inability to prepare for one’s death due to the disease course explains part of the fear and anger, and therefore the shame and cultural stigma, that arise in those suffering from it[4]. Crucially, as medical technology has progressed, more and more responsibility is placed on the dying person in the interests of the patient’s autonomy. Understanding the sociocultural position of MAiD requires recognising how these responsibilities have changed throughout history.

The next stage of the moral evolution of the modern managed death is appearing; one can, in certain medical circumstances, decide the internal and external circumstances of one’s death. Many terminally ill patients worldwide have already been faced with the choice of precisely how, where, and at who’s hand they die, in addition to the usual responsibilities of funeral and property preparations, and the strain of at least one incurable illness[5]. We should not underestimate the psychological toll this experience exerts on the patient. In this scenario, the old model of physicians passively presenting the dying with their treatment options and leaving them to decide independently seems almost neglectful here. It is my view that the imbalance in understanding, in this case, between patient and physician can be partly addressed by the insistence of the physician to understand the historical and sociocultural circumstances that inform the patient’s perspective, and which in turn informs the physician’s perspective of the patient’s individuality.

In his book Better, surgeon Atul Gawande highlights limitations of what he calls the ‘transactional’ model of medicine, whereby physicians are purely passive salespeople of options, and any attempt to influence the patient’s decision making is seen as an affront to the patient’s autonomy. He argues (and I agree) that this ignores two key facts; firstly, that patients may have relatively little qualitative knowledge of their options (for example, the experiential difference between two different courses of chemotherapy, or between different palliative care options), despite how well they can be communicated by the physician[6], and secondly, that the patient almost always has different priorities than the medical staff[7].

Doctors are called upon to provide, at least in part, moral guidance, perhaps like never before, requiring what for many physicians will be a new dimension of empathy. Accordingly, a good deal of this new empathy could be unlocked by understanding MAiD as not a right, but a responsibility that we are granting our patients, a realization that comes at the end of properly considering how we have died in the past, and how we want to die in the future, a cultural surround I deem as essential for physicians practicing MAiD to understand. What I am calling for is not a change in the way we communicate dying or what to do when we’re dying but rather a greater understanding of the process.  It is important for modern physicians to understand the practical responsibilities of their dying patients, the millennia of culture from which they emerge, and how their communication takes place within this context.

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[1] For an insightful exploration of the evolution of mankind’s attitudes and practices towards death and dying (especially elaborating on the practical distinction between biological death and the dying process, and how the temporal relationship has altered as humanity’s living environments and religious attitudes change) see “A Social History of Dying”, Allan Kellehear, Cambridge University Press, 2007

[2] The position of shame in medical contexts and its role in doctor-patient interactions is examined in the paper “Health-related shame: an affective determinant of health?”, Dolezai and Lyons, Medical Humanities, 2017

[3] This example is, among thousands, representative of pre-modern attitudes towards protecting the dead with physical objects in their places of burial, from informal graves to grand royal mausoleums.

[4] See again Kellehear 2007

[5] As per each respective country’s legal framework for determining MAiD eligibility, which generally speaking requires an incurable terminal illness, and may or may not include some notion of ‘intolerable’ or ‘irremediable’ suffering. For a review of the main models of MAiD, and an ethico-legal comparison, see “Comparative and critical analysis of key eligibility criteria for voluntary assisted dying under five legal frameworks”, White et al., University of New South Wales Law Journal, 2021

[6] As an analogy, consider how much you’d understand if a mechanic had to explain your car’s engine to you before you let them fix it, then multiply the complication by orders of magnitude for the biological complexity of the human body, the multi-disciplinary nature of the care it necessitates, and the psychological stress of having to consider all of this new information within your own value structure.

[7] Consider the relative importance to a patient of an upcoming relative’s birthday and whether a surgery is done laparoscopically (through keyholes) or not. Not that patients should not be informed of these details, but that physicians should be seriously cognizant of patient’s individual priorities.

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