Denying but not defying

The protracted and public dying of the late Pope John Paul II, the tube-feeding cases of Terry Schiavo in Florida, Mrs BWV (in the case of that name) and Maria Korp in Victoria, are all examples of a rumbling dialectic in modern Western societies about the limits of medical treatment and causing death.

In The Tablet last year, Paul Keeley, a palliative care physician in Glasgow, challenged those responsible for the prolongation of the late pope’s dying process. He wondered why the pope was not allowed to die peacefully, ‘rather than an ugly medicalised death’, being subjected to futile and intrusive treatment, such as a tracheostomy, when afflicted by terminal pneumonia.

One can also only be amazed at the incredible death-denying spin put out by the Vatican medical spokesman throughout the saga. Why were devout Catholics praying for their Holy Father to be further delayed in his reunion with his creator? Keeley rightly points out the spiritual importance and history of the ‘good death’.

Causal assertions are never far away when the media considers these issues. When talking of the decision by the Public Advocate of Victoria to withdraw tube feeding from Maria Korp, who was dying with severe irreversible brain damage after prolonged asphyxia, a Melbourne newspaper unhelpfully ran a headline stating that she was being ‘starved to death’.



In an attempt to improve decision-making at the end of life, specifically for situations where the patient is incompetent, there has been growing interest in the development of advance directive programs in Australia. Programs such as Respecting Patient Choices and Planning My Future Medical Care (the latter currently under consideration by the Australian Catholic Bishops Conference and Catholic Health Australia) attempt to get people to appoint agents and leave written instructions recording their wishes for future care when they are unable to speak for themselves. Similar moves are under way in Britain, and there are long-established legal instruments of this sort in the United States, Canada and several Australian states. So far, however, all such policy-based legalistic approaches have had negligible impacts on care and decision-making at the end of life, despite high hopes.

The problem is that the issue of causing or not causing death, the moral line in the sand, has become virtually the only aspect of care and decision-making at the end of life that gets societal or media attention.

In fact, much of the thinking about death in society centres on the idea of ‘natural’ death. Though widely used in common parlance, as if its meaning is clearly understood, on closer scrutiny the term actually encompasses two things.

At one level, in its forensic sense, it implies absence of any human contribution to the cause of death. At another level, in an existential sense, it implies the self-evident truth that death is an inevitable part of the ‘natural’ human condition. From this second meaning flows a spiritual, social and behavioural sense of conscious preparation for death, as a key component in the quest for both meaning and dignity in human life, particularly in its final part.

Modern palliative care is deeply imbued with this aspect of the term, and works to assist people to deal with the realities of their situation—as individuals and in their family and social context. However, this palliative-care approach is certainly not value-neutral. It relies on an acceptance, of some sort and at some level, of the inevitability, and hence the ‘naturalness’ of one’s fate, that going with the process rather than fighting against it is the most dignified, comfortable and indeed logical way to proceed when it becomes apparent that further curative-intent treatment, or maintenance of life-support measures, is only postponing the inevitable, and probably causing its own suffering as well. None the less, when giving voice to this apparently almost truistic recognition of reality, palliative care can come into stark conflict with modern individualistic ‘human-potential’ world views, based as they seem to be on the imperative to fight for everything you want, or even that, if you have enough faith, you will get what you want. Death seems to have to be either fought and conquered, or chosen; it cannot just be.

Cause of death is, of course, a matter of central importance for both medicine and the law. Medicine, and in particular, palliative care, that branch of health that cares for people who are dying, adopt the position that medical intervention should neither intend to hasten death nor prolong the process of dying when cure or remission of disease are no longer realistic goals.

This position of what might be called ‘causal neutrality’ has grown from, and is consistent with, the Judeo-Christian ethic, the dominant one in Australian and other Western societies, and also with Islam. Each of the three major monotheistic religions holds that humans have a natural life span determined by God, that the mode and timing of death does not lie with humans, and that human agency cannot be involved. Law tends to be shaped over centuries by the dominant religious tradition of the country or jurisdiction concerned, and all have historically forbidden causing the death of a person (unless sanctioned by the state for punitive reasons). This position of causal neutrality has been challenged over recent decades on three fronts.

First, euthanasia has become a topic of wide public debate. Overwhelmingly the public has indicated that, in certain circumstances at the end of life, most notably where suffering is unrelieved or where quality of life is impaired to such a degree that the person feels that life is no longer worth living, it is permissible to have someone else help that person to die. This runs directly counter to the values laid down by religion and reflected in the law. With a few notable exceptions, most jurisdictions explicitly forbid third-party assistance in dying.

Second, modern medicine now has the capacity to maintain life, and thereby also to prolong dying, or life in a permanently brain-damaged unconscious person, in ways that were inconceivable when the major religions laid down their moral and legal codes. It is therefore quite mistaken to apply time-honoured absolute interdicts against causing death (although all have allowed the death penalty and some still do) to decisions about modern medical treatment.

Third, in public policy and the law there has long been the assumption that some palliative interventions, or deliberate lack of intervention, do indeed contribute to the cause of death. These interventions include the giving of escalating doses of opioid drugs such as morphine for pain and symptom relief, and sedatives for agitation and distress at the end of life on the one hand, and the cessation or non-initiation of various medical treatments on the other. These are, however, allowed because of the ethical and public policy imperative to relieve suffering and avoid a purposeless prolongation of dying and its attendant suffering and loss of function, as stated so clearly in the objectives sections of the Victorian Medical Treatment Act (1988) and the South Australian Consent to Medical Treatment and Palliative Care Act (1993).

However, the assumption concerning cause of death and the use of opioid and sedative drugs in palliative care is wrong. Any drug can endanger life if used inappropriately, but the knowledge and skills built up over some 30 years of palliative-care practice have shown that opioids and other similar drugs can quite safely be used for symptom control without bringing causation into question if the parameters of accepted practice are followed. Pain is treated by opioid drugs without danger to life for weeks and often months before death, and for even longer in people with chronic pain who live a normal life span. It is also true that the use of escalating opioid and sedative drugs close to the point of death has the theoretical potential to have some influence on precise timing of death, although it is not possible to validate such an observation one way or the other, and nor is it ethical, appropriate or important to attempt to do so.

This clinical understanding, generated by modern palliative care experience, did not, however, exist in 1957, when the then Justice Devlin gave advice to an English jury in the famous case of R v Adams. Devlin, concerned specifically with the use of morphine and heroin in terminal care, was reliant on medical opinion of the day, which held that opioid drugs were dangerous and that their use at the end of life inevitably entailed causing or contributing to the cause of death through respiratory depression. To accommodate this within the law, Devlin introduced, for the first and only time into such legal deliberations, the doctrine of double effect. This has its origin in the Roman Catholic moral theological tradition, in which an outcome forbidden by religion, in this case causing or contributing to the premature death of a dying patient, is permissible, provided that certain conditions are met, notably that this outcome must not be intended.

Despite the general falsity of the medical assumption underpinning it, and the fact that the intentions and motives of the doctor on trial were also open to question, Devlin’s advice is still frequently quoted when end-of-life issues are considered in the English common-law tradition. The law continues to assume that palliative care interventions may indeed contribute to cause of death, but takes a commonsense and humane approach to accommodate this, usually as Devlin did, by invocation of the principle of double effect.

Due in no small part to its incorporation into the legal reasoning in this frequently cited case, this false causal assumption, combined with the legacy of the Judeo-Christian imperative, continues to generate anxiety among doctors, nurses and the general public. Health workers, imbued with the scientific tradition, tend to believe that the law just looks at bare causality, and, it seems, palliative care may contribute to cause of death in the eyes of the law. However, while the law looks at the facts of a case, it is also concerned with the legal process of determination of legal liability, and in legal parlance the term ‘causation’ encompasses both these aspects, and will not even apply a causal analysis if there has been no legal duty established, or illegal conduct.

At the same time, medical practice is to a large degree based on, and informed by, an imperative to keep patients alive at all costs, and to do everything possible to achieve this. The massive technical advances within medicine throughout the 20th century have promoted the illusion, both within medicine and in the public mind, that death can be indefinitely postponed. To admit death is to admit defeat. This, combined with the widespread assumption that palliative interventions may incidentally contribute to a patient’s death, has generated a resistance within mainstream medicine to the delivery of appropriate care of people who are dying.

Palliative care teams, especially those working in acute hospitals, often find themselves working through (overtly and covertly) these causal issues in end-of-life care with the treating team, patients and families.

They become advocates for the recognition of natural death in the sense of acknowledgment of its imminence and inevitability, often in situations where heroic but futile and disproportionate treatment options are being offered to dying persons. The challenge is to bring about a transition in the goals of care to comfort and dignity rather than cure or length of survival. This tends to be resisted by a willing co-conspiracy between desperate patients and families, and their doctors, in a system which all too readily constructs death as an enemy to be fought at almost any cost until the last possible moment.

Most religious groups have been very supportive of palliative care. Provision of appropriate and timely skilled care for pain and suffering is almost universally agreed upon, regardless of divergences of opinion about euthanasia. But religions can further help by reassuring their people that all their scriptural foundations and moral codes were formulated well before we had the capacity to prolong human life, and that none of these traditions require the dying to be treated as if they are curable, that modern medicine does indeed have its limits. Heroic treatment for incurable conditions should be seen as obstruction of the dying process and, for those who believe, ignoring God’s call. Despite the continuing secularisation of most societies, religious groups still have a valuable role in reconnecting people to ancient traditions that can bring comfort and meaning to those facing death and loss. If their teachings are being used, however erroneously, to justify acharnement thérapeutique (literally, therapeutic harassment as it has been put in French), it would greatly help if they would set the record straight, and reassert the ‘naturalness’ of death.

In care and decision-making at the end of life it is argued that the deliberative processes and discourse should move away from almost exclusive focus on human agency and death causation, important though this is, and embrace non-obstruction of the dying process and self-determination as well. ‘Natural’ death should be seen as having a composite meaning, which embraces both forensic and existential senses. And in the final analysis all would surely agree that there is more to a ‘good’ or ‘good enough’ death than causality.

Death and dying are everybody’s business, and medicine can ease the journey or make it harder; this, and only this, can be our choice.

Michael Ashby is director of the Centre for Palliative Care, and Professor of Palliative Medicine, Department of Medicine, St Vincent’s Hospital, University of Melbourne.

 

 

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