We must separate the question of whether assisted dying is morally acceptable from the question of whether it should be legalised
Autonomy, the right to self-govern, forms the basis of most arguments supporting assisted dying. Proponents say “it’s my right,” “my choice,” “my death.” Framing assisted dying as a rights based issue is compelling: who are we to deny someone their right to die? But autonomy is only one ethical principle guiding medicine. None of us has the autonomous right to rob a bank, or even to receive antibiotics when we have a cold. Not because of the potential for harm to ourselves, but because of the potential for harm to others.
What might the potential harms of legalising assisted dying be? For example, what extra pressures might a change in the law put on people? Legalisation could change the behaviour of some people—such as those who are weak, frail, and who feel that they are a burden but would not otherwise have considered assisted dying. There is a risk that for some of the most vulnerable, their “right” to die could become a duty. A profound cultural shift for all of society, for the benefit of a relative few.
A critical question is how do we protect the weakest within assisted dying legislation, as well as enable freedoms for the strong? “With appropriate safeguards” is the standard response. But which safeguards are appropriate? Indeed, how safe is safe enough? What margin of error are we willing to accept? Put bluntly, would we accept the death of one person who did not want to die, in order to allow the deaths of some who did?
The determination of mental capacity is probably the most important safeguard, but capacity is not a black and white issue. How much capacity is enough to make this decision? How might the individual values of doctors influence the outcome of capacity assessment? Restricting access to people expected to survive fewer than six months, while fraught with difficulty from a practical point of view, may make legalisation more palatable. But once this is done it is a small step to increase it to 12 months, to any condition, to anyone. This is what we have seen happen elsewhere. For example in Belgium, which became the first country to authorise euthanasia for children, and Canada where within months of the 2016 Medical Aid in Dying Bill, the possibility of extending the law to “mature minors” and those with mental illness was announced. These issues require careful scrutiny.
Oregon, where the Death with Dignity Act has allowed assisted dying since 1997, is frequently held up to us as an example to follow, where there is no evidence of abuse of the law. But Oregon does not collect data adequate to determine this. Data on assisted deaths in Oregon come from a form filled out by the physician who wrote the lethal prescription. And in the first decade of legalisation, one quarter (62/271) of all lethal prescriptions in Oregon were provided by just three doctors. Is this a model that we wish to emulate?
Proponents of assisted dying tell us that public support for assisted dying in the UK is around 80%. But they are less quick to mention that this support falls away when complexities similar to those described above are made apparent. If these polls tell us anything, it is not the proportion of people who do or don’t support assisted dying, but how readily people change their views when presented with new information. Unlike the tick boxes on an opinion poll, once assisted dying is enshrined in law, there is no going back.
We all agree that dying should be dignified but frequently is not. In England the amount of dignity you can expect in dying appears to depend on where you die, with people who die in hospices experiencing the most dignity, and people dying in hospitals the least. Sequential reports have highlighted a crisis in end of life care. We are amassing a bleak library of failure in how we care for the dying and we should be angry about it. But we should be channeling this anger towards improving care for the ordinary half a million people who die every year, not just towards the wishes of a vocal minority.
People frequently cite feeling a burden as a reason for wanting assisted dying. Surely we should try to find ways to enable people to live without feeling that they are a burden. While I do not believe that palliative care is a panacea, that it can solve all suffering, we know that it could benefit far more people than currently receive it.
There will always be people who want to die before their bodies do. I have spoken to families who have taken loved ones to Dignitas in Switzerland, and I have not doubted that this was the right, and carefully arrived at, decision for them. But we must separate the question of whether assisted dying is morally acceptable from the question of whether (and how) it should be legalised.
Laws exist to protect society. They have to work for the weakest among us. We cannot consider legalisation of assisted dying unless we are certain that a change in the law would be associated with more protection for society, not less. Right now, this condition has not been met.
Katherine Sleeman is an NIHR clinician scientist in palliative medicine, based at King’s College London. Her research uses routinely collected data to understand and improve end of life care, particularly for people with dementia. Twitter @kesleeman
Conflicts of interest: I have written and spoken about assisted dying in various places over the past three years, and occasionally received travelling expenses for this.