The status quo validates practices that blur the lines around assisted dying

Last year, with my research associate Sally Eales, I interviewed 19 people with personal experience of assisted dying for the campaign Dignity in Dying to inform a report [1]. We approached the project from a neutral position on legalised assisted dying.

The interviewees included people who were contemplating travelling to Dignitas in Switzerland to have an assisted death and family members who had either accompanied their loved ones there, or who had ultimately been unable to arrange the assisted death that their loved one wanted. The latter were the most distressing interviews. Many of these people couldn’t arrange travel due to financial and legal obstacles and had to watch their friend or family member suffer a highly distressing death.

How can the law best cater for the small number of dying people for whom palliative care is insufficient, and the much larger number of people whose quality of life is negatively impacted by fears of what their death might be like?

The question of how best to protect all in society is fundamental, and some concerns arise from a lack of faith in the safeguarding arrangements that would accompany legalisation of assisted dying.[2]

The argument that we cannot countenance any change in the law for fear that it may precipitate a “slippery slope” into unintended practice is understandable, but surely misplaced. Society would be incapable of moving forwards on many issues, from the cloning of organisms to disclosure of patient information, if we were to accede that ethical complexity fatally compromises our ability to generate thoughtful, nuanced regulation.

Determining someone’s ability to make decisions at the end of life, for example, is not a challenge unique to assisted dying. Guidance for the withdrawal of ventilation in motor neurone disease makes clear that doctors should assess mental capacity and explore the possibility of coercion. Similarities also arise in relation to the issue of burden. Does not wanting to be a burden on people around you mean your decision making capacity is impaired? Research shows that concern about being a burden influences care preferences under the current law. We accept these sentiments as valid and do not believe consideration of them to be unsafe.

A striking finding of our research was that although some doctors were willing to give heightened levels of pain relief or sedation, others were not—making the timing and manner of death a lottery. The status quo validates practices that blur the lines around assisted dying, yet fails to provide the clarity, transparency, and meaningful choice that could be built into assisted dying legalisation.

The lack of legislation also makes it impossible to determine whether the people who go to Dignitas, often prematurely because they must be able to travel, are doing so voluntarily. Furthermore, what legal and ethical obligations does society have towards people who are so desperate for control at the end of life that, as we discovered, they attempt to suffocate themselves, jump from multi-storey car parks, or overdose on cocktails of whisky and drugs?

Growing evidence from jurisdictions worldwide that have adopted assisted dying legislation shows that safeguards can work.[3] Assisted dying laws in the US, on which recent legislative proposals considered by Westminster were modelled, have led to no reports of abuse and no extension of eligibility criteria. What’s more, some opponents of the law in Oregon 20 years ago, who have  sought out malpractice, now accept that the legislation works as intended.

Palliative care is not a panacea. Although we heard many examples of enlightened care, we also recorded harrowing cases in which palliative care failed to reduce the torment of dying people. Nobody is arguing that assisted dying should replace palliative care but there is no reason why they could not co-exist.

In considering assisted dying we cannot go on presuming that the status quo is safe and that any change would threaten it. Current UK law fails to protect dying people. Assisted dying, as has been implemented elsewhere, can offer a safe and compassionate solution to some of these problems. We should have courage and stand with our international colleagues, including palliative care specialists, to recognise the long overdue need to introduce similar legislation for assisted dying in the UK.

Bronwyn Parry is a professor of global health and social medicine at King’s College London (KCL). She has published extensively on assisted reproduction, dementia and the ethics of brain donation, bioinformation and biosurveillance, and the global trade in organs and bodily commodities. She was elected to the Nuffield Council on Bioethics in 2007 and is currently director of the School of Global Affairs at KCL. Twitter @ParryBronwyn

Competing interests: The interviews for this project were commissioned by Dignity In Dying for their report The True Cost, however, the opinions expressed in this commentary remain my own.

References

[1] Dignity in Dying. The True Cost: How the UK outsources death to Dignitas. November 2017. https://cdn.dignityindying.org.uk/wp-content/uploads/DiD_True_Cost_report_FINAL_WEB.pdf

[2] Sleeman K. Assisted dying—how safe is safe enough? BMJ Opinion. 8 March 2018. https://blogs.bmj.com/bmj/2018/03/08/katherine-sleeman-assisted-dying-how-safe-is-safe-enough/

[3] Battin MP, Van der Heide A, Ganzini L, Van der Wal G, Onwuteaka-Philipsen BD. Legal physician-assisted dying in Oregon and the Netherlands: evidence concerning the impact on patients in “vulnerable” groups. Journal of medical ethics 2007 Oct 1;33(10):591-7. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2652799/