Hard cases: re-conceptualising the legal control of euthanasia and end-of-life choices within a chronic care unit

This thesis aims to re-conceptualise the law as it relates to end-of-life practices; to defend the law’s prohibition of voluntary euthanasia and physician-assisted suicide; and to examine the perceived need for legal ‘control’ of assisted death. It draws on the results of a small qualitative study with Motor Neurone Disease patients, their families and doctors in a Chronic Care Unit to probe and re-evaluate the law and ethics of end-of-life decisions. It integrates this analysis with an examination of relevant empirical research and published research from a range of disciplines. Part One of this thesis explores the problem of definition: what are euthanasia and physician-assisted suicide and are they legally, ethically and clinically different from other end-of-life practices such as pain relief and treatment refusal? The philosophical tradition which informs my analysis grounds personal moral responsibility in a person's intention. I argue that the intention to cause death must be central to the definition of euthanasia and physician-assisted suicide. I contend that the much-maligned double effect principle is consistent with established criminal law principles. Referring to case studies from my interviews, I demonstrate that double effect reasoning provides practical guidance about the appropriate use of pain relieving medication. I challenge the prevailing meanings of futile and burdensome treatment, with their underlying notion of the ‘worthless life’, and argue that in some circumstances a doctor’s cooperation with a patient’s refusal of life-sustaining treatment amounts to physician-assisted suicide. I suggest how doctors can respond to a suicidal refusal within the bounds of what should be legal. Part Two of the thesis presents a critical examination of two competing claims in the debate about voluntary euthanasia and physician-assisted suicide: first, the claim of autonomy as a basis for seeking access to an assisted death; and secondly, the claim of vulnerability which cautions that assisted death poses special risks to the weak or marginalised. I argue that a patient’s expressed desire for autonomy or control can disguise, rather than explain, the underlying physical and psycho-social drivers of the request for assisted death. Examining women as a case study of a population identified as vulnerable, I point to evidence that certain dimensions of vulnerability, including a patient’s social, economic and cultural circumstances, can operate as controlling influences that subvert genuine autonomy and explain some decisions for assisted death. Part Three of the thesis considers the reality of the so called euthanasia underground, in jurisdictions where assisted death is prohibited. Presenting data from interviews within a Chronic Care Unit, I demonstrate how the prevailing organisational culture facilitates what may amount to illicit euthanasia within the institutional confines of a hospital. Using three key indicators of legal control - voluntariness, visibility and accountability - I provide a comparative analysis of the effectiveness of legal control under prohibition and the Dutch and Belgian regimes which have legalised voluntary euthanasia and physician-assisted suicide. Prohibition has serious shortcomings, but the evidence is that legalisation also fails to achieve effective control. I also examine the dispute about two significant quantitative studies in the Netherlands and Australia, which underscores the complexity of evidence-based analysis. This thesis highlights the limitations of legal control in any form, but argues that the symbolism of criminal prohibition is still an important safeguard of the social norm which forbids intentional killing. On balance my findings support a policy of criminal prohibition of voluntary euthanasia and physician-assisted suicide. I propose a clinical based, ‘non-law’ strategy which both targets the underlying motivators of patient demand and doctor involvement in assisted death, and expands medical education about palliative care. I conclude that requests for physician-assisted suicide and euthanasia can be more effectively and compassionately addressed, not with philosophical or legal arguments, but with practical clinical skills