Major gaps persist in knowledge of the practice of assisted suicide and euthanasia

The devil is in the detail

By Michael Cook

Twenty-five years ago, on November 8, 1994, the citizens of the state of Oregon voted in favour of a Death With Dignity Act. It took a couple of years for the initiative to be implemented, but the Act has been working smoothly ever since. Or so it seems.

In that quarter of a century, according to official statistics, prescriptions for lethal medications have been written for a total of 2,217 people; 1,459 people have actually died. Oregon’s Act has been used countless times as a template for bills submitted to legislatures around the world.

More than 180 million people now live in a jurisdiction where they can legally access some form of medical aid in dying – the Netherlands, Belgium, Luxembourg, Switzerland, Colombia, Canada, eight American states, and one Australian state.

But even though 25 years have passed, there are still surprisingly big gaps in our knowledge of how assisted suicide and euthanasia work.

An article in BMJ Supportive & Palliative Care by two Belgian physicians, Sigrid Dierickx and Joachim Cohen, outlines the shortcomings of research into this controversial area. They both support legalised euthanasia, but acknowledge that statistics are deficient. Here are some of their findings:

In some jurisdictions, research is quite difficult as there are no legally required reporting procedures. In some of them mentioning “medical aid in dying” on a death certificate is forbidden.

“One major caveat of studying MAiD [medical aid in dying] practice through the reported cases is that it suffers from an under-reporting bias. Studies have estimated that, even several years after legalisation, from 1/5 (the Netherlands) to 1/3 (Belgium) [of] cases are not reported.”

“More in-depth knowledge overall is needed into the MAiD decision- making process, especially concerning vulnerable population groups such as the oldest old and people suffering from severe mental illness … most research on MAiD practice has been limited to interviewing or surveying physicians. More research exploring the narratives from patients and patients’ relatives is particularly needed to gain a more complete picture.”

“Research on the link between MAiD practice and palliative care and quality of care remains … scarce. For instance, more research is needed on how legal MAiD practice influences palliative care practice on a daily basis and how palliative care professionals experience MAiD being practised in a palliative care context.”

“Concerns are also expressed regarding the possibility of people feeling pressured towards requesting euthanasia due to feeling a burden for their relatives and society in general and the fear that MAiD is seen too soon as a solution for suffering. Therefore, there is a knowledge-need about how MAiD legislation eventually affects societal discourses regarding palliative care, suffering, old age and dying.”

“The absence of an in-depth examination of the possible impact of involvement in MAiD procedures on relatives’ health, well-being and bereavement care needs remains an important gap in our understanding of the process and consequences of the practice.”

Before legalisation in a state or country, the media frames the debate over assisted suicide or euthanasia as an ideological battle between conservative pro-life activists and progressive pro-autonomy activists. After legalisation, they lose interest.

Not only is this poor journalism, it’s a tragedy for the state or country. The hard questions about whether this bitterly contested policy is actually working are not being asked.

Editor’s note. Michael Cook is editor of MercatorNet where this appeared. Reposted with permission.