The Australian state of Victoria has become the latest jurisdiction to legalise assisted dying, joining Belgium, Luxembourg, The Netherlands, Canada and US states including Oregon, California, Colorado, Hawaii, New Jersey and Washington. In the UK, assisted dying remains illegal. But there are signs that indicate that the UK is inching towards legalisation. For example, in March 2019 the Royal College of Physicians adopted a position of neutrality, and the British Medical Association and Royal College of General Practitioners have both decided to consult their members on whether the official position of these organizations should change from opposition.
Much of the public debate around the legalisation of assisted dying remains binary: yes or no. But this is a dangerous oversimplification. Assisted dying laws exist along a continuum. For example, in Oregon, assisted dying is only available to people who have a terminal illness expected to result in death within six months. In Belgium, by contrast, assisted dying is available to people with unbearable and unrelievable mental or physical suffering, regardless of predicted life expectancy.
The most recent three Bills to appear before the UK Parliament have advocated a law similar to Oregon’s, with assisted dying restricted to those expected to die within six months. This position is supported by Dignity in Dying (formerly the Voluntary Euthanasia Society), the most prominent UK campaigning organisation. We argue that the six-month rule is arbitrary, discriminatory, and difficult to implement because clinicians’ predictions of life expectancy are frequently inaccurate.
Although there is a legal precedent in the UK for defining terminal illness as a prognosis of six months or fewer, there is growing opposition to this definition. A recent report by the All-Party Parliamentary Group for Terminal Illness described this definition as “outdated, arbitrary and not based on clinical reality” and recommended that the definition of terminal illness be uncoupled from any timeframe.
Campaigning organisations’ support for the six-month rule may reflect the fact that the “terminal” nature of illness is key to public support for assisted dying. For example, the 2005 British Social Attitudes survey found that support for assisted dying fell from 80% to 45% for illnesses that were incurable and painful, but not terminal. The thought of assisted dying for people with fewer than six months to live may seem more palatable than thinking about those who have longer to live; but this is not a rational position. Public and professional discomfort with the prospect of assisted dying for people with longer life expectancies needs to be better understood.
Most importantly, the six month rule is discriminatory. Arguably, the very people most likely to feel the need for assistance to die are those who face a longer period of suffering. Omid T, who chose an assisted death last year in Switzerland rather than face the prospect of slow progressive deterioration from Multi Systems Atrophy, would not have been eligible for assisted dying under an Oregon-style law, or that for which Dignity in Dying has campaigned. How can a law that excludes those with arguably the greatest need for an assisted death (because their life expectancy may extend to years) be justified? Why should discrimination against people with slowly progressive conditions, including dementia, be tolerated?
It has been estimated that, by 2060, there will be almost 50 million people dying each year with palliative care needs, and that the number of people with dementia who experience serious health-related suffering before they die will increase fourfold. How should our society and our policy makers respond to this projected escalation in suffering? Palliative care services can improve the quality of life and symptom burden for people with life-limiting illnesses. But services are patchy: in England, investment in palliative care varies from around £50 to over £2000 per person per year, and end of life care is a priority for a mere 4% of regional health boards. Significant investment in palliative care services is needed to ensure availability of palliative care to those who might benefit from it. For people whose suffering cannot be relieved even with the provision of high quality palliative care, consideration of legalisation of assisted dying must not be limited to those with fewer than six months to live.
The assisted dying debate has long been characterized by extreme polarity. Indeed, on the surface, our views on legalization of assisted dying are fundamentally different. But having dug beneath the surface over a couple of years we have found that, while approaching the issue from opposite directions, we agree on much and share some essential concerns. Specifically, we agree on (i) the use of evidence over anecdote, and rationality over hyperbole, to guide laws and decision making; (ii) the basic premise that laws should protect both personal choice and security; (iii) the need to reduce inequalities in care, including access to palliative care for people with life-limiting illnesses; (iv) the importance of dignity during as well as at the end of life; (v) the importance of relieving suffering, and not only among those expected to die within a few months; and (vi) the limits of palliative care to relieve all suffering.
Although assisted dying is not currently legal in the UK, it is likely to be only a matter of time before it becomes so. Instead of vehement arguments over the binary question of yes or no, we need a more nuanced societal debate. What sort of law and what level of predicted risk would be acceptable? How might such laws be implemented? Which populations are most at risk of harm? And how can these harms be mitigated? Whether or not assisted dying ultimately becomes legal, public discourse must address these complexities.
Katherine Sleeman is an NIHR Clinician Scientist and honorary consultant in palliative medicine at King’s College London.
Competing interests: None declared
Iain Chalmers is a retired health services researcher.
Competing interests: None declared