Baroness Ilora Finlay of Llandaff
Family physician; Professor of Palliative Care, School of Medicine,
Cardiff University, Cardiff, Wales; Member of the United Kingdom Parliament House of Lords
What stood out for me in the IAHPC study was that 61% of respondents thought that the current public debate is “confusing the public and decision makers by "blurring distinctions between palliative care, medically assisted death, and euthanasia.”
As a family physician and enthusiastic advocate of early palliative care for patients with any progressive illness, I find this fact the most tragic consequence, and predictable side effect, of this ongoing debate. The public is confused about “assisted dying,” with many thinking it is actually what we call palliative care. And palliative care itself fails to get public debate and increased understanding and traction in the press.
In Wales in 2008, a national palliative care strategy rolled out support available seven days a week for those needing specialist palliative care, with advice 24/7 to any health care professional caring for such a patient. In Scotland in 2020, the laws and policies related to health and social care changed to value patients’ lives, enabling disability assistance and supportive care earlier in the course of their illness, independent of prognosis. Such radical improvement needs to be understood and universally rolled out. Maybe when this evidence-based palliative care intervention has had time to reach all patients and has been evaluated, “assisted dying” might be seen for what it is—a huge existential threat to those with disability and ongoing health needs.
As the response rate of the IAHPC survey of its membership was only 25% (n=263), it is difficult to draw firm significant conclusions from most responses. Just seven professionals reported having been personally involved in assisted dying practices. Unsurprisingly, 70% of palliative care specialists reported that euthanasia and physician-assisted suicide should not be part of palliative care, and a majority (86%) made clear they should be involved in any such discussion, which is in line with the National Health Service's tenet of shared decision-making: “no decision about me without me.”
Open comments by respondents revealed contrasting opinions as to whether palliative care could obviate the need for euthanasia or assisted suicide. Yet the survey failed to ask the fundamental question: Is providing assisted suicide/euthanasia part of clinical care or not? If the law on homicide/assisting suicide changes, there is no need for this to be foisted on the shoulders of medicine, especially not palliative care. Let clinicians get on with caring, with finding new and better ways to relieve distress and support patients and families. Assessments of eligibility for and provision of lethal drugs is not part of health care, so let a separate judicially-led system determine eligibility for lethal drugs and provide them—no medical skills are required in administering lethal doses. As a nurse in Kenya said, “good, accessible, affordable, acceptable, and quality palliation” is the way to go, not euthanasia.
Palliative care can only address the physical and existential suffering of advancing disease if it is triggered early in the course of the illness, before people are demoralized and worn down by their needs being ignored. The diagnosis of a life-threatening illness is usually a crisis, causing people to suddenly confront their mortality. Support and guidance from that point on can help people live well and die well.
We need national debates to demonstrate how early palliative care provided across health care can allow people to live well and then die well in due course, as well as receiving disease-modifying care. The current assisted-suicide and euthanasia debate is a distraction and is hindering the progress of palliative care.
The inequities in provision worldwide need to be addressed urgently. But requiring services to end patients' lives prematurely is too dangerous a road to go down.
Growth in palliative care services has stalled since 2012 in Belgium and the Netherlands; New Zealand hospices felt obliged to obtain a ruling from their Supreme Court to refuse to participate, and in 2012 two-thirds of Oregon hospices had practices or polices refusing involvement. Assisted dying jurisdictions have low world rankings in quality of end-of-life care: Netherlands is 8th, New Zealand 12th, Canada 22nd, and Belgium 26th. Access to specialist palliative care is poor across the world, including assisted dying jurisdictions. Experience in Canada is that the practice of requiring or expecting all clinicians to routinely offer the option of an assisted death is adversely affecting access to specialist palliative care.
All assisted dying jurisdictions have seen rapid rises in numbers: a tenfold increase in six years in Canada, a 10% increase last year in Belgium, and 13% average yearly increase in Oregon. No jurisdiction has seen numbers reduce. Safeguards, attacked as discriminatory, become relaxed or removed either through legislation or in relaxed practice protocols.
There is no evidence that specialist palliative care has benefited from legalizing assisted dying.