As an increasing number of jurisdictions legalise assisted dying, attention is focusing on palliative care clinicians’ role in service delivery.
Dr Gert Huysmans remembers the first person he assisted.
“Arjen [name changed] was in his 50s, a larger-than-life character, a motorcyclist,” recalls the 62-year-old physician.
“He had a cancerous tumour that had overtaken his mouth and jaw. When he reached the point that he couldn’t ride his motorcycle anymore, he got his son to put it on a trailer behind the car and rode it around like that for a while. And then he came to me.”
Huysmans provides palliative care services for people with life-limiting illnesses at the Coda and Lotus palliative care centres in Wuustwezel on the outskirts of Antwerp, Belgium.
He also provides euthanasia, a form of assisted dying.
Assisted dying takes two forms: physician-assisted suicide, in which health-care professionals prescribe lethal drugs for the patient to self-administer; and euthanasia, in which health-care professionals administer the lethal drugs themselves. With both procedures, the intent is to end a patient’s life at their voluntary request, subject to eligibility criteria and requisite safeguards.
Belgium was one of the first countries to legalise assisted dying, adopting legislation in May 2002, five years after the State of Oregon did so in the US.
Since then, at least 15 countries, have legalised the service, some including Canada, Colombia, Luxembourg, the Kingdom of the Netherlands, Portugal and Spain – legalising both forms, others – including Germany, New Zealand and Switzerland – legalising assisted suicide only. In Australia, the Northern Territory is now the only jurisdiction in the country whose residents do not have access to assisted dying, while in the USA, 11 states plus the District of Columbia have legalised assisted suicide only.
Here at home, the case of right-to-die activist Sean Davison made headlines when he was arrested and convicted of premeditated murders of three people he helped to die. Davison was sentenced in 2019 to eight years under house arrest, five of which were suspended.
“With the ageing global population and increased prevalence of chronic diseases, interest in and demand for assisted dying has grown significantly,” explains Julie Ling, a palliative care specialist who is chief executive officer of the European Association for Palliative Care, and consults for the European Regional Office of the World Health Organization (WHO).
There are also indications of an increase in the number of people availing themselves of assisted dying services. For instance, Belgium has gone from 235 cases in the first full year after legalisation to 3423 cases reported in 2023, a rising trend which Huysmans believes is partly driven by an increase in requests for euthanasia from people suffering from multiple morbidities.
However, as Huysmans points out, such data need to be interpreted with caution because in Belgium – as in other countries – death certificates list the underlying illness, such as cancer, as the cause of death, rather than the euthanasia procedure itself, in part to maintain patient–doctor confidentiality.
One of the striking aspects of the current regulatory landscape is the diversity in approaches taken to assisted dying. Commonalities exist, such as requirements regarding minimum age and the patient’s state of mind and capacity to take decisions, but there are also significant variations, notably regarding the mode of medication delivery.
Meanwhile, governments considering the introduction of assisted dying regulation – often against the backdrop of increasing public demand – continue to struggle with questions regarding how best to design, regulate and deliver assisted dying services. Global institutions that might be expected to generate normative guidance on these issues – including WHO – have yet to do so. To date, one area of consensus appears to be the need to rely on palliative care clinicians to deliver such services.
To this, Huysmans said: “It is logical that people turn to us. We have specialist knowledge, not only of the relevant medicines but also of caring for people who are facing the end.”
Despite this acceptance, Huysmans initially had reservations. “All of my training as a general practitioner was geared towards healing, not killing.
And even as a palliative care specialist, my focus is end-of-life care which is not the same as ending a life.”
Nancy Preston, a professor of palliative care at Lancaster University, who has worked extensively on assisted dying, reports similar attitudes in the United Kingdom of Great Britain and Northern Ireland.
“Many of the doctors who support legal reform in favour of assisted dying in the United Kingdom acknowledge they do not wish to be directly involved,” she said, adding that for many, the psychological impact is a core concern.
“Helping someone to die is much more than just a medical procedure.
It has a tremendous impact on the clinicians involved.”
Sarah Barber, Director of the WHO Centre for Health Development at the WHO Kobe Centre in Japan, highlights concerns about recourse to assisted dying reflecting shortcomings in palliative and psychosocial care provision.
“Depression, anxiety and other medical conditions can often be managed through health and home-based interventions that enable people to maintain functional ability and good quality of life. The concern is that recourse to assisted dying may reflect a lack of such interventions.
Concurring with this Huysmans said: “Good palliative care is the best guarantee that euthanasia is not performed because of bad or absent care.”
Huysmans assisted around seven people a year to end their lives. He also trains other clinicians.
Cape Times