Death arrives. It comes to us all, yet we live our lives as if we somehow have the ticket to immortality.
Fear is a powerful emotion, driving us to try desperately to regain control. Yet control is an illusion. No one calls for their disease to progress, but I have met thousands whose priorities changed when ill. They valued the care and affection from those around them. In other words, they recognised that their individualistic sense of autonomy is in reality relational. We are profoundly influenced by those around us and by the society in which we live.
Many people have witnessed others dying, sometimes decades ago, and have seen what happens when excellent palliative care isn’t available when needed. Disease does not respect the clock or the calendar and until very recently the NHS had no statutory duty in law to commission palliative care services to meet need. It was charitable funding that built hospices, established home care teams and recruited thousands of volunteers, all motivated by trying to improve care.
So, would assisted dying, on balance of harms, increase our chances of good care as death approaches or are the recognised risks too high a price to pay? Lessons from Canada’s Medical Assistance in Dying (MAiD) euthanasia and assisted suicide provisions reveal some uncomfortable truths. MAiD deaths have increased rapidly annually over 7 years from 1010 to 10064 in 2021 – a 989% increase – and figures for 2022 are not yet released. The ‘slippery slope’ is fact, not fiction. Some doctors have become full time euthanists, with 1 in 13 of all deaths (all causes) on Vancouver Island being by euthanasia. Doctors and nurses are looking for jobs outside palliative care as they feel morally injured, ‘indelibly marked’, by MAiD.
Over 7 years of MAiD, Canadian palliative care fell 11 places in the world rankings, while Belgium dropped 21 places in the same period. Palliative care improvements do not go hand in hand with physician assisted dying.
But surely these are all people who were going to die anyway, I hear you cry. No, they were not. People with disability (a wheelchair user needing a ramp), a man needing home adaptations, another needing help with rising rent, a girl with Downs syndrome – all have been offered death rather than the support they need to live well. These people recorded their horror at being offered death rather than help, but for others there is no record of the quality of assessment when they were offered MAiD. Canadian law expansion to those with solely mental illness and to mature minors is planned.
Such expansion becomes inevitable as such laws contain the seeds of extension, to do otherwise would be to discriminate.
How many had an undiagnosed depression that if treated could transform their view of their situation? Oregon research suggest it could be between 1/3 and 1/6 of patients. In other countries anorexia and learning difficulties have become justifictions for lethal drugs.
How many diagnoses are wrong? The Royal College of Pathologists reported that post-mortems show about 5% die of a condition different to the one for which they were receiving treatment.
Can terminal illness be accurately defined? No, prognosis is a probabilistic art, a guess at best.
And coercion? Debates on the Domestic Abuse Bill revealed how rife undetected coercive control is. About 1 in 5 people in the UK over the age of 65 have been affected by abuse, mostly financial or emotional abuse, or neglect. In Oregon fear of being a burden has been cited as a concern by 53% of those dying by assisted suicide. But society itself is coercive – 65% of Canadians agree that “the elderly and those with disabilities will feel more pressure to choose death in order to avoid being a burden on others.”
The public don’t understand what ‘assisted dying’ is. Only 43% realise it means giving lethal drugs. 42% think it is stopping life sustaining treatment, 10% think it is hospice care both of which are currently available. Very few realise taking lethal drugs means ingesting a mixture of over a hundred tablets, with a 7% complication rate. Sometimes death takes many hours; 9 Oregonians have even reawakened. In euthanasia the mixture injected aims to stop breathing so the person dies of asphyxia – if muscle paralysis drugs are used they can’t move a muscle to signal any distress.
What is our duty as legislators? We have just agreed that palliative care must be adequately provided. Even proponents of euthanasia and assisted suicide recognise there will be errors. On balance of harms we must continue to protect our vulnerable citizens and work to improve their lives, not to end them. There is too much at stake.
Baroness Ilora Finlay FRCP, FRCGP, FMedSci, FHEA, FLSW
Professor Ilora Baroness Finlay of Llandaff is an independent Crossbench Peer in the House of Lords, and a Deputy Speaker. She is a member of the House of Lords Special Inquiry Committee on the Integration of Primary and Community Care.
She has pushed legislation on many health issues, securing the Chief Coroner, banning smoking in public places, recently ensuring that the Health and Care Act now includes palliative care is a core NHS service and high-street cosmetic proceduresbecome regulated. She was a Member of the House of Lords Select Committee on the Assisted Dying Bill and chaired the Select committee of Science and Technology inquiry into Allergy. She co-chairs several All-Party Parliamentary Groups, including Global Health. Her current Private Members Bill concerns internet safety.
She chairs the Commission on Alcohol Harms; CO Research Trust; Co-Chairs the Bevan Commission in Wales and was Vice-chair of NICE’s ME/CFS guideline. She established Living & Dying Well, a think-tank around end-of-life issues, and has spoken and written extensively on the subject, including co-authoring the book ’Death by Appointment’. She is a member of current The Times Commission on Health and Social Care.
She is President of the Chartered Society of Physiotherapy, a past-President of the Royal Society of Medicine, BMA, Medical Women’s Federation and the Association for Palliative Medicine, and Vice-President of several charities, including City Hospice, Hospice UK and Marie Curie.