A change in the law on assisted dying – it’s not a question of if but how…

The law will change on assisted dying, and it is in everybody’s interests, both those sympathetic to change and those sceptical, that this comes about via Parliament and not the courts.

We are at a crossroads. People do not want to suffer against their wishes at the end of life and some people, with the support of their loved ones, are willing to take matters into their own hands to ensure that they don’t. Until Parliament gets a grip on this issue the law will continue to be challenged in the courts and practice on the ground will evolve. There is an irony in this: if the vocal minority opposed to change continue to block legislation in Parliament, we could well end up with a more permissive system c/o the courts.

 

Successful legal challenge

Last week, in a hugely significant development in the campaign for greater patient choice at the end of life, the Court of Appeal ruled that the Director of Public Prosecutions (DPP) must clarify the prosecution guidance on assisted suicide – specifically, as it relates to healthcare professionals and care workers. Whilst the DPP quickly confirmed that he would appeal this decision at the Supreme Court (most likely in the autumn), within a year we are likely to know to what extent a healthcare professional can advise and assist a patient who wishes to die. In understanding the impact of this judgment it is worthwhile considering how we got to this position in the first place.

 

Background to change

Prior to the Suicide Act 1961 it was an offence to attempt to end your life. Over time a consensus emerged that suicide was a medical issue not a legal one and that to criminalise vulnerable people who sought to end their life was (clearly) uncompassionate. Alongside this there was an understandable concern about coercion and to that end a new offence of assisting or encouraging suicide was created punishable by up to 14 years in prison. But Parliamentarians recognised that there was likely to be a huge variance in this new offence – between those who maliciously encourage suicide and someone who compassionately helps a dying relative to control their death at their request. Therefore the Suicide Act 1961 states that no prosecution can be brought for assisting a suicide without the direct approval of the DPP. In reaching a decision on whether to prosecute the DPP must take into account whether to do so is in the public interest.

For approximately the next forty years the issue of the ‘right to die’ largely remained a theoretical one. Whilst anecdotal stories of family doctors helping dying patients on their way abounded, there was no concrete evidence that in practice people were being helped to die at their request. Then in 2002 the first Briton travelled abroad to die. To date, over 200 Britons have travelled abroad to die and they have become the embodiment of the much wider issue that dying people are taking matters into their own hands. Whilst the public debate has raged as to whether we should be outsourcing assisted dying to the Swiss, other cases have emerged of dying people who have ended their own lives at home with help from loved ones.

 

Legal dilemma

These cases created a dilemma for the judiciary. Hardly anyone, not even those opposed to a change in the law on assisted dying, has the stomach to prosecute people who assist a loved one to die on wholly compassionate grounds. For laws to work effectively they must enjoy the confidence of the public and the public are understandably reluctant to potentially imprison someone for up to 14 years in these circumstances. Thus despite evidence existing that people were breaking the law prosecutions were not sought, and the reasons for not doing so were never transparent.

 

 Debbie Purdy

This left people like Debbie Purdy, who is living with MS and who wants the option to be able to travel abroad to die should her suffering become unbearable, in a terrible quandary. To delay a decision to travel abroad to die as long as possible, she would need to rely on her husband’s assistance to make the journey. On the balance of probabilities, and given the lack of prosecutions, it seemed unlikely that her husband would be prosecuted, but then she could not be sure and would die with that anxiety hanging over her. This in turn forced her to contemplate travelling abroad to die earlier than she would wish and whilst she was physically able to make the journey alone.

In 2009, supported by Dignity in Dying, Debbie won a legal case that resulted in the DPP issuing prosecuting guidance which set out the likely factors for and against prosecution. The policy effectively states that a loved one acting in an amateur capacity and wholly on compassionate grounds is unlikely to be prosecuted for helping a loved one to die indirectly (indirectly is key – direct assistance is considered murder). For most the new prosecuting policy met the requirement set out by the courts that people must have a reasonable understanding of what actions are likely to lead to prosecution. But this clarity did not extend to healthcare professionals.

 

Clarity for healthcare professionals

The policy in effect states that healthcare professionals are likely to be prosecuted for helping a patient to die. However, the policy does not clearly state what assisting a patient to die entails. Clearly, a doctor can safely assume that providing a patient with a prescription of life ending medication that they knew the patient intended to take would result in prosecution. But does it also include talking to a patient about their wish to die? How much information could they give them? And could they advise on seemingly legal activity such as a patient voluntarily stopping eating and drinking?

This lack of clarity led the Medical Defence Union to advise doctors not to discuss the issue of assisted dying with patients (an example of overt risk management on behalf of those they represent, rather than arguably what is in the best interests of patients), whilst the British Medical Association advises doctors to avoid “all actions that might be interpreted as assisting, facilitating or encouraging”. By turn this created a paradox. Assisted dying was happening, but the very people who could expertly advise patients at this critical time were in effect being ordered to abandon their patients.

Hopefully, the Supreme Court will uphold the Court of Appeal’s judgment and require that the DPP provides further clarity in this area, which would ensure that both patients and healthcare professionals would be much clearer on where they stand. But this in turn throws up another important question for society.

 

The Netherlands

Opponents of change often cite the experience of the Netherlands as a reason not to change the law. So the story goes the Dutch introduced a tightly defined assisted dying law, limited to the terminally ill, that over time has been chipped away at and extended to the disabled and others who consider their suffering unbearable. In reality for decades doctors practised unregulated voluntary euthanasia (the direct ending of a patient’s life at their request) and then in 2002 the Dutch introduced the Termination of Life on Request and Assisted Suicide (Review Procedures) Act to regulate existing practice. The law has not been extended and assistance to die is allowed on a subjective assessment of unbearable rather than terminal illness.

On a libertarian basis a subjective assessment of unbearable suffering provides ultimate patient autonomy. But from the perspective of patient safety it does raise several important concerns. When someone is terminally ill their illness is progressive, irreversible and will result in death. In choosing an assisted death a dying person is exercising choice and control over an inevitable process. Less the right to die but when dying the right to have control over the manner and timing of death. When suffering is extended beyond the terminally ill and encompasses the suffering of disabled people and people with chronic illnesses there is the prospect of recovery and/or over time adaption to their condition. Furthermore knowing where to draw the line becomes ever more difficult. If suffering is subjective do we enable those with mental illnesses to have an assisted death, or the recently disabled who might not yet have adapted to living with their disability? How severe must a disability or illness be and how do we define this in law. This is not to argue that such a change in the law is impossible, but more difficult, and one on which there is far less consensus than on the need to legalise assisted dying for the terminally ill within upfront safeguards.

And so the Netherlands tells us nothing about the infamous slippery slope, but rather provides an insight as to what happens when the law tries desperately to catch up with existing practice. Contrary to this the US states of Oregon, Vermont and Washington have introduced assisted dying laws that lead and set practice. Restricted to terminally ill, mentally competent adults, their laws have not been widened, numbers using the laws remain relatively low and there is no evidence of abuse.

 

The future

So this isn’t a question of should assisted dying be legalised but of how. Ultimately a bad law applied with common sense and compassion is no match for a compassionate and sensible law applied with rigour and force. Both those sympathetic and sceptical to change face a challenge: either work together to draft a well defined law fit for the 21st Century or see a more permissive change evolve over time. The prize is a safeguarded law that will stand the test of time.