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Palliative care or assisted dying? We just need to start talking more about ‘the right to die well’

There doesn’t need to be a choice between palliative care or assisted dying. Author provided

In most parts of the world the proponents of palliative care and of assisted dying do not see eye to eye. Palliative care activists say the problems that lead to assisted dying requests can usually be dealt with in ways that do not hasten death. They promote quality of life and reject the idea of “dying on demand”. Supporters of assisted dying, on the other hand, argue that palliative care cannot be effective in every case. To them, the important thing is to respect autonomy and freedom of choice.

It’s unclear whether these two approaches can be reconciled.

Relations between supporters of palliative care and of assisted dying have a history of tension, even antagonism. Dame Cicely Saunders, founder of the modern hospice movement, was fond of going head-to-head in debates with members of the Voluntary Euthanasia Society in the 1960s, for example. More recently, the society’s change of name to Dignity in Dying in 2006 antagonised the hospice and palliative care world by implying that its practitioners did not have the monopoly on a dignified end.

Just last year, a group of experts representing the European Association for Palliative Care again declared that the provision of euthanasia and assisted dying should not be included in the practice of palliative care – a position that has remained unchanged for the last two decades.

The British Medical Association likewise remains opposed to the legalisation of assisted dying in any form, though in a series of recent reports it said it now seeks “to move debate beyond oversimplistic for/against positioning to consider some of the complex issues surrounding physician-assisted dying, its potential complexities and changing legislative and practical frameworks”.

Over the years, however, palliative care has struggled to gain traction. Indeed, my own research has shown that just 20 countries in the world have achieved “advanced integration” of their palliative care services with the wider health and social care system.

Palliative care physician BJ Miller discusses what really matters at the end of life for TED Talks.

The UK is ranked the best place to die when it comes to palliative care, according to an index constructed by the Economist Intelligence Unit (EIU). But there have been obvious failings and shortcomings in the delivery of palliative care at scale. We see these in the furore over the Liverpool Care Pathway and in poor reports on end of life care from the ombusdman and the Care Quality Commission.

Would legalised assisted dying have any bearing on these problems? We only have a few examples to go on.

Legalising assisted death

Euthanasia and/or physician assisted dying are currently legal in just four countries: the Netherlands (2001), Belgium (2002) and Luxembourg (2009) have all legalised euthanasia. This means it is legal in these countries, provided certain procedures and protocols are followed, for a doctor to kill a patient at their informed and competent request.

In the US, individual states have focused their efforts on the legalisation of physician assisted suicide, though the broader term “aid in dying” is now being adopted by some. This involves a doctor in a process to prescribe lethal drugs to a person who, following defined procedures, has resolved to end their own life by taking the drugs, and then does so. It was legalised in Oregon in 1997 and more recently was taken up by Washington State, Montana, and Vermont. California will soon follow when its End of Life Option Act comes into effect on June 9.

By long standing arrangement, Switzerland does not prosecute those who assist a suicide, provided they do not benefit from the outcome.

In locations where either physician assisted suicide or euthanasia are legalised, there is no evidence this inhibits the development of palliative care. In Oregon, most of the very small numbers of people who avail themselves of the Death with Dignity Act are actually on hospice programmes. In the Netherlands, palliative care services, research and education appear to have thrived in the period since euthanasia was fully legalised, though they were underdeveloped before that.

Belgium provides the most interesting example: it has almost 200 palliative care services, is in the list of 20 countries with “advanced integration” of palliative care and was ranked fifth worldwide in the EIU’s “quality of death” index. It is also home to academic research groups studying end of life issues as well as leading professors in the field – yet in Belgium about one death in 20 results from euthanasia.

The Flanders model

Something unique has happened in the Flanders region of Belgium: the practice of euthanasia and the delivery of palliative care have been brought together in a single “integral” model. Here no contradiction is seen delivering the best pain and symptom management and the holistic psycho-social support that palliative care has to offer, while also enabling a person’s life to be ended at their request, by a physician.

The Flanders model offends some and inspires others. But, as the authors of one of the few studies on the matter conclude:

Most values of palliative care workers and advocates of euthanasia are shared. If Belgium’s experience applies elsewhere, advocates of the legalisation of euthanasia have every reason to promote palliative care, and activists for palliative care need not oppose the legalisation of euthanasia.

Should assisted dying and the delivery of palliative care exist side by side? Their shared aim would be to provide relief from suffering, support dignity and also allow the freedom to determine the manner and timing of one’s own death. Flanders and Oregon hint that this approach can work, and we intend to look at this further in our Wellcome Trust-funded study on Global Interventions at the End of Life.

It is perhaps time to bring down the ethical and ideological wire fence which has for so long separated the two approaches to the end of life: palliative care and assisted dying. Once this barrier has been removed we might more fully explore how best to deliver dignity and choice to the growing number of people who will die in the world every year.

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