Following the second reading (and parliamentary support) of Labour MP Kim Leadbetter’s terminally ill adults (end of life) bill on November 29, much of the public debate in England and Wales will now shift to questions around safeguards. If the safeguards aren’t considered adequate, the bill is unlikely to pass through the several parliamentary hurdles that remain before it becomes law.
So what safeguards or steps are needed to verify a person’s choice of assisted dying? To answer this question, lawmakers will look to evidence from other jurisdictions with experience of assisted dying.
For example, there have not been any reported cases of coercion of patients to access assisted dying in Victoria, Australia. But the UK also has some relevant and long-standing experience it could draw on.
Doctors in England and Wales – and of course, the rest of the UK – are already often involved in end-of-life decisions. Those decisions are extremely important and affect many people.
For example, 4-5% of the population die in intensive care units. This compares to 0.5-1% of deaths due to assisted dying in places like Australia. Most of those deaths in intensive care follow decisions to withdraw or withhold intensive treatment – for example, to stop a breathing machine.
Such decisions occur for adults, children and even newborns. The decisions are usually not able to directly involve the patient himself or herself (since at the time of decisions, they are usually too unwell), but will involve family members and take into account the person’s wishes, if possible.
There are difficulties in how such decisions are sometimes made and ways they could be improved. But the usual response to such challenges is to improve guidance, support and training, rather than to stop or limit decisions.
There are also many legal decisions made in advance by patients to refuse medical treatment – so-called “living wills”. Around 3% of the population of England and Wales have such documents.
In common with the conditions for accessing assisted dying, it is thought to be very important that when people sign these documents they have capacity (the ability to make decisions) and are not being coerced. However, there is no formal medical process for assessing patients when they sign such documents – they do not need to see a doctor at all. Nor is there widespread concern about coercion affecting decisions.
The above decisions to stop or not start life support are widely accepted, but there are other end-of-life decisions that remain highly controversial, albeit lawful. For example, since the case of Tony Bland in the early 1990s (who suffered severe brain damage in the Hillsborough disaster in 1989), it has been legal in England and Wales to withdraw artificial feeding from some patients with severe permanent brain injury.
These decisions were thought to be so serious that, for a long time, families and doctors were required to go to court before making such a decision. However, the court process was lengthy, expensive and burdensome.
In 2018, an influential Supreme Court ruling concluded that it was not necessary to involve the court in every case. There are now clear professional guidelines that set out how such patients should be assessed and how decisions should be reached in patients’ best interests.
Where there is disagreement or uncertainty, cases can still be referred to the Court of Protection. But if there is no disagreement, and all involved agree that this is what the person would have wanted, the court is not needed.
Finally, we might reflect on a very different controversial medical decision. Since 1967, it has been lawful for women to have a termination of pregnancy in a range of circumstances. The most difficult cases occur late in pregnancy – after 24 weeks.
There are limited circumstances in which this is legally available, and it requires agreement by two independent doctors. Only one in 1,000 abortions in England and Wales occur at this late point in pregnancy. Are the safeguards and rules that apply to later termination of pregnancy adequate?
There are strong differences in opinion, from those who are completely opposed to later abortion, to those who believe it is time to decriminalise them.
There is no reason to expect that these differences will disappear. And no law will satisfy both sides. However, the long experience of this law – with polls suggesting that most people support it – suggests there isn’t an obvious need for more stringent rules.
When it comes to the question of safeguards and assisted dying, any rules will inevitably have to compromise between respecting choice and setting limits.
Like other difficult but important ethical decisions with which we are more familiar, it will be important to ensure, as far as possible, that decisions are made with due care and that patients are protected. But it is not clear that we need more stringent safeguards for assisted dying than we accept for other similarly serious ethical decisions in medicine.
Dominic Wilkinson is affiliated with the British Medical Association (the views in this article are his own and do not represent the position of the BMA). He receives funding from the Wellcome Trust.
