Problems with the Eligibility Criteria

These criteria are problematic for several reasons. For one thing, they make no sense as distinct prospective conditions in law. The second condition allowing EAS for “incurable physical conditions” which result in “unbearable suffering that cannot be alleviated” could easily conceivably include every terminal illness. What purpose would including the first more restrictive condition constitute if the second were part of a statute licensing EAS in medical practice?

Indeed, the second condition is so wide in its potential application, that it includes not just every terminal illness, but practically every chronic illness and disability. The phrase “unbearable suffering” is, after all, entirely subjective. Nobody could gainsay what is “unbearable” for any individual, and so as long as their suffering could be attributed to an incurable physical condition, it would form a justification for euthanasia or assisted suicide in Jersey.

This covers a range of common incurable chronic illnesses and physical impairments, which can be kept at bay for years by effective treatments and involve long and happy lives for those suffering from it:

• ‘Long’ COVID-19
• Diabetes
• Chronic-Fatigue syndrome
• Down’s syndrome
• Asthma
• Parkinson’s and Alzheimer’s syndromes and dementia (which are physical conditions)
• Inflammatory Bowel Disease (Ulcerative Colitis, Crohn’s disease)
• Any cancer
• Hypertension (high blood pressure)
• Ischaemic Heart Disease (which can cause heart attacks, heart failure, and arrhythmias)
• Chronic Obstructive Respiratory Disease (CORD)
• Cerebrovascular disease (strokes)
• Multiple Sclerosis (MS)
• Osteogenesis imperfecta (‘Brittle Bone Disease’)
• HIV
• Renal failure

 

In fact, the Proposition before the States Assembly, as it stands, would allow for euthanasia or assisted suicide for practically any condition, as long as a physical cause could be said to underlie it. This has direct disability rights implications, and in the absence of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) being extended to Jersey, no full audit of the effect of such a law on islanders with disabilities would take place.

Further, despite deliberately not including psychological disorders as the Citizens’ Jury determined, it would nonetheless include them as any psychological suffering could be said to constitute “unbearable suffering”. This is because suffering is a mental state (as opposed to pain, which is a physical manifestation). This carries the danger of undue pressure into euthanasia or assisted suicide being placed on a wide cohort of vulnerable people. The Eligibility Criteria within the Bill head straight down the logical cliff of EAS.

 

Limited Assisted Suicide Conditions Also Problematic

The first set of conditions relating to terminal illness, aside from being superfluous given the second wider set of conditions which include them implicitly, would also be profoundly flawed.

The two elements of this condition is that the terminal illness “is expected to result in unbearable suffering that cannot be alleviated and is reasonably expected to die within six months”. Once again, “unbearable suffering” is totally subjective, and so would countenance any psychological suffering (e.g. depression) caused by terminal illness being responded to with patients being euthanised or enabled to end their own lives.

The restriction to six months meanwhile, is practically useless because of the radical uncertainty in any such projection. Determinations that a person is likely to die of an illness or complication are prognoses (a medical professional’s opinion of the probable course of a medical condition), not diagnoses (proven identification of a given condition). The nature of prognosis is uncertain – they constitute predictions based on statistical averages, which in themselves are very unreliable in determining what will happen to any given individual patient. It is notoriously difficult to prognose a patient’s death from a particular condition or the complications relating to it, and a necessary and objectively demonstrable clinical judgement cannot reasonably be expected within anything more than a relatively short timescale.

Whilst proposals to include a six-month prognosis assume doctors can accurately predict this then, the reality is that doctors’ prognoses become more inaccurate the longer the survival. Proportions of prognostic error include 20% of predictions in motor neurone disease, 50% of predictions in heart failure, and 5% of terminal diagnoses overall.

It is highly common for medical prognoses of death outside of such a period to be mistaken, and many people prognosed with death, even within months or weeks, go on to live much longer and happier lives. To illustrate this point, albeit with a graver ending: the assisted suicide campaigner Noel Conway, who suffered from Motor Neurone Disease (MND), was prognosed with twelve months to live in January 2017; in fact, he died four-and-a-half years later, in June 2021, having made the decision to remove his ventilator.

Further research has consistently shown that clinicians’ predictions are frequently inaccurate:

• A 2016 systematic review of predictions of patient survival in palliative care, including 4,600 medical notes where doctors predicted survival, concluding that “the evidence suggests that clinicians’ predictions are frequently inaccurate”, having showed a wide variation in errors ranging from an underestimate of eighty-six days to an overestimate of ninety-three days.

 

• In 2017, a study conducted by researchers at the Marie Curie Palliative Care Research Department at University College London looked at 26 previously published studies comprising 25,718 predictions made by clinicians using the “Surprise Question” (“Would you be surprised if this patient died within the next 12 months?”) over a ten-year period, as a means of recognising those patients who might benefit from palliative care. It found that the accuracy of predictions varied considerably, with clinicians tending to over-predict the number of people whom they thought would die. Over half (54%) of those predicted to die within a specified time period lived longer than expected, and clinicians made inaccurate predictions in a quarter (25%) of all cases including a third of the patients who did die, both a significant proportion of patients.

 

• A 2019 study found that clinicians’ temporal predictions of patient mortality are frequently inaccurate and unreliable, this time finding a systematic tendency to overestimate how long a patient has to live, rather than the over-predictions of previous studies.

 

In fact, the increasing unreliability of clinical prognoses over time has long been recognised. In their evidence to the Lords Select Committee examining Lord Joffe’s Assisted Dying for the Terminally Ill Bill in 2004, the Royal College of General Practitioners stated:

“It is possible to give reasonably accurate prognoses of death within minutes, hours or a few days. When this stretches to months then the scope for error can extend into years”.

The Royal College of Physicians, giving similar evidence, said that,

“prognosticating may be better when somebody is within the last two or three weeks of their life… when they are six or eight months away from it, it is actually pretty desperately hopeless as an accurate factor”

(both cited in chapter 4 of the Select Committee on Assisted Dying for the Terminally Ill Bill, First Report, House of Lords, 04th April 2005).

We see this reality in the jurisdiction where assisted suicide has operated the longest, the U.S. State of Oregon:

• The latest annual report from the Oregon Health Authority on the operation of their ‘Death with Dignity Act’ shows that patients lived far longer than six months – some for almost three years (1,080 days). Comparison with previous reports finds that in only one year of the operation of Oregon’s assisted suicide regime (the very first – 1998), did no patients die outside a six month prognosis.

 

• Health officials are clearly sensitive to this as the report now notes how many patients have ‘outlived [their] 6-month prognosis’ – 77 people out of the 1,905 people who have died by assisted suicide since 1998. It should be noted that reporting is not mandatory in Oregon; no penalties for failure to report figures are imposed on doctors, meaning that only the most conscientious doctors in Oregon report at all. As such, the data concerning Oregon is limited at best, and so any figures will underestimate the true reality. Nevertheless, even this artificial figure obscures a fundamental point: the six-month prognosis concerns the time left to patients before their underlying illnesses cause death, and we cannot know how many of the 245 people who died by assisted suicide in Oregon during 2020 would have lived perhaps longer than six months had their suicides not been enabled by their doctor.

 

• The application of the six-month prognosis in Oregon has shifted over time, and opens up the application for assisted suicide to include cases which are ‘artificially’ terminal. That is, where the underlying disease becomes a prognosable cause of death due to human action (or perhaps inaction), rather than the inevitable progression of the illness. In 2018, the Oregon Health Authority confirmed to a Swedish researcher, Fabian Stahle, that in an Oregonian context, someone with diabetes could decide not to continue life-sustaining treatment for their condition, as a result of which what is normally a chronic and manageable condition would become ‘terminal’ under the law, qualifying them for assisted suicide. ‘Terminal illness’ then, in Oregon, is now defined to include people who will become terminally ill merely if they refuse effective medical treatment or care.

 

Demonstrably, statutory reliance on terminal prognoses, as prescribed within the Proposition before the States Assembly, opens up the premature death of many more patients, and cohorts of patients, than is typically proposed and intended by the introduction into law and medical practice of provision of physician enabling of their patients’ suicides. This further illustrates both how many people may lose years of life due to physician-assisted suicide alone, and the inevitable failure to obviate patient abuse.