Terminally Ill Adults (End of Life) Bill: call for evidence
here's mine
Margaret McCartney, MBChB, MRCGP, PhD, FRSE
I have been a GP for almost 25 years, and I am Senior Lecturer at the University of St Andrews, a Senior Associate at the Centre for Evidence Based Medicine at the University of Oxford, and I have a special interest in evidence based medicine. I am also a freelance writer and broadcaster.
Background
I am especially interested in evidence based medicine because the history of medicine shows us clearly that well intentioned doctors can do harm. What seems logical can be harmful in practice. For example, it seemed obvious to many eminent doctors that putting babies to sleep on their fronts would stop them choking on vomit: however, research found that this ‘logical’ advice was actually harmful in practice. It increased the risk of sudden infant death in babies. Now, of course, we recommend putting babies to sleep on their backs. Or take the seemingly sensible practice of asking parents to avoid peanut products to avoid allergy in their children; in fact, this had the opposite effect. Infants not exposed to peanuts were more likely to be allergic. In another case, researchers thought that the realities of parenthood would reduce teenage pregnancies. Older schoolchildren were given ‘robot babies’ who cried and demanded attention. The effect was compared with a control group who had fake baby, and the groups were compared. The children given the robot baby were more likely to become pregnant.
Unintended consequences are frequent in healthcare and policies do not always do what they are designed to do. This is because individuals, healthcare workers, and healthcare systems do not always respond predictably to interventions which may seem theoretically straightforward.
General practitioners frequently come across suffering people in abusive relationships (emotionally, physically, sexually, financially) whether between couples, families, and acquaintances. It is not uncommon to find people in work who are relying on food banks and are in debt, often using payday loan services. Poor mental health is common . Care workers often have only a few minutes allotted to see the most complex patients, who may be in pain, lonely or distressed. Hospice beds are not usually available promptly to people in need and often require a labyrinthine, slow referral system with no guarantee the patient will be seen or admitted.
Impact on patients
The Assisted Dying Bill states that those who are terminally ill and over 18, with capacity, may be assisted in dying if they have a clear, settled and informed which to die and they have not been coerced. The patient shall be “reasonably expected” to be dead within 6 months. Doctors are to be allowed to raise this with patients, and discuss this with them, or refer to another who will. They refer to the second doctor for the assessment. Doctors have to assess whether the patient is terminally ill, has capacity, has a ‘clear, settled and informed wish’ to die and has made this decision voluntarily and without coercion.
There are multiple problems with this.
Estimation of survival time
Clinical estimates of time to die in a terminal illness are notoriously inaccurate. For example, the convicted Lockerbie bomber Abedlbaset al-Megrahi was freed from jail on compassionate grounds after he was estimated to have less than 3 months life remaining. He survived for almost three years after this. Doctors both under and estimate the remaining lifespan of terminally ill patients (1). Doctors are unable to give accurate estimates of time remaining.
2) The assessment of capacity
Most professionals who assess capacity have had concerns about indue influence, especially for people with learning disability (2). The assessment of capacity is not a perfect art with significant disagreement between clinicians (3). This is especially the case in diseases which can affect capacity, e.g. in people categorised as mild Alzheimer's, where there is low agreement for between doctors (4).
Further, the fact that the first doctor refers directly to a second doctor is an easy way to introduce bias: the first doctor is subconsciously primed to ask a similar doctor with similar views to assess the patient. This means that the second assessment is liable to confirmation bias, rather than an independent view. The need for a second doctor has been widely flouted in abortion law (5).
Mental illness can co exist with terminal illness. Mental illness may not affect capacity yet may affect the persons’ view of themselves, their worth, and their sense of being a burden.
3) Coercion
There is no medical test to ensure that a person is free of coercion. Further, there are other factors which may place extreme pressure on people: debt, loneliness, hopelessness, poverty. GPs commonly encounter people who are existing on shoestrings, who feel they are a burden on their family and friends, or indeed health services. There is no test which can reassure doctors that this is not the case.
It is falsely reassuring to assert that doctors can ensure that a patient is acting without coercion. Lawmakers should either explicitly accept this risk, and remove the wording: or decide that because coercion cannot be excluded, it is too risky to proceed with this law.
4) External factors
35% of Canadians who sought assisted dying in 2022 said they felt themselves a burden on friends of family, and 17% said they were lonely (6). Assisted dying may therefore be sought more by people who experience these. The risk of loneliness is highest in people who are poorest (7).
Sexual, emotion and financial abuse is sadly common in older people (8).
Overdiagnosis and over treatment result from a constellation of factors. One key issue is of what tools are available to doctors. If doctors cannot access specialist pain services, palliative care services, or hospice services, they may be inclined to offer what they do have, including access to assisted dying. The ability of doctors to raise this with patients who have not suggested it themselves means risking that more appropriate treatment is not offered. Proactive, inappropriate offers have been reported in Canada (9). We already know that hospital bed numbers in the UK are comparative to the rest of Europe, very low (10). People in the most deprived areas have less access to hospice beds, making an already vulnerable group even less likely to receive inpatient palliative care (11).
Medical assessments of quality of life versus patient assessments of their own quality of life can markedly disagree, especially in longer term conditions. People with learning disabilities experience poorer health care and access to it (12). Disabled people report high quality of lives yet are often assumed by doctors to have a lower quality of life (13). People even with severe disabilities can experience high quality of life - even though their carers underestimate it (14). I think there is a high risk of bias when a doctor makes an assessment of a patients’ wish to die if that person is disabled.
General Practice is in a state of crisis. Dis-continuity of care is rising (15). This means that GPs are less likely to know their patients well over a period of months and years. It risks ‘fly-by’ relationships, where neither party knows the other well. It increases the risk of making poor quality decisions.
If the Bill is enacted, doctors should opt-in, rather than opt-out. This should not become a routine part of general medical care.
5) Summary
This Bill is popular with many people who want to plan their own deaths and retain a perception of control, for many reasons. However I do not think we should act according to what we think we personally might prefer, but what the risks are to the most vulnerable people in our community.
This Bill risks the people who already have least being offered assisted dying, and accepting it more because they feel a burden, or/and are excluded from society, and/or not have enough basic resources to live on, including social supports.
I think it is likely to do unacceptable harm because of this.
1) Christakis NA, Lamont EB. Extent and determinants of error in doctors' prognoses in terminally ill patients: prospective cohort study. BMJ. 2000 Feb 19;320(7233):469-72. doi: 10.1136/bmj.320.7233.469. PMID: 10678857; PMCID: PMC27288.
2) Ariyo K, McWilliams A, David AS, Owen GS. Experiences of assessing mental capacity in England and Wales: A large-scale survey of professionals. Wellcome Open Res. 2021 Jun 10;6:144. doi: 10.12688/wellcomeopenres.16823.1. PMID: 34235274; PMCID: PMC8246303.
3) Molloy DW, Silberfeld M, Darzins P, Guyatt GH, Singer PA, Rush B, Bédard M, Strang D. Measuring capacity to complete an advance directive. J Am Geriatr Soc. 1996 Jun;44(6):660-4. doi: 10.1111/j.1532-5415.1996.tb01828.x. PMID: 8642156.
4) Kmietowicz Z. Pre-signing of forms found in 14 out of 249 abortion clinics in England BMJ 2012; 345 :e4784 doi:10.1136/bmj.e4784
5) Marson DC, McInturff B, Hawkins L, Bartolucci A, Harrell LE. Consistency of physician judgments of capacity to consent in mild Alzheimer's disease. J Am Geriatr Soc. 1997 Apr;45(4):453-7. doi: 10.1111/j.1532-5415.1997.tb05170.x. PMID: 9100714.
6) MAID, Annual report, 2022. https://www.canada.ca/content/dam/hc-sc/documents/services/medical-assistance-dying/annual-report-2022/annual-report-2022.pdf
7) University of Essex, Institute for Social and Economic Research. (2024). Understanding Society. [data series]. 13th Release. UK Data Service. SN: 2000053, DOI: http://doi.org/10.5255/UKDA-Series-2000053
8) Safer Ageing. What does growing old in the UK look like. https://wearehourglass.org/sites/default/files/inline-files/SAFER%20AGEING%E2%80%93%20what%20does%20growing%20old%20in%20the%20UK%20look%20like__Layout%201.pdf
9) Paralympian trying to get wheelchair ramp says Veterans Affairs employee offered her assisted dying. CTN News, 2/12/22
10) BMA. NHS hospital beds analysis. January 2025 https://www.bma.org.uk/advice-and-support/nhs-delivery-and-workforce/pressures/nhs-hospital-beds-data-analysis#:~:text=2021%20data%20or%20latest%20available&text=Compared%20to%20other%20nations%2C%20the,%2C%20by%20contrast%2C%20has%207.8.
11) Gregson N, Randle-Phillips C, Hillman S. People with intellectual disabilities' experiences of primary care health checks, screenings and GP consultations: a systematic review and meta-ethnography. Int J Dev Disabil. 2022 Apr 5;70(2):184-200. doi: 10.1080/20473869.2022.2056402. PMID: 38481461; PMCID: PMC10930134.
12) Sleeman KE, Davies JM, Verne J, Gao W, Higginson IJ. The changing demographics of inpatient hospice death: Population-based cross-sectional study in England, 1993-2012. Palliat Med. 2016 Jan;30(1):45-53. doi: 10.1177/0269216315585064. Epub 2015 May 19. PMID: 25991729; PMCID: PMC4681161.
13) Iezzoni LI, Rao SR, Ressalam J, Bolcic-Jankovic D, Agaronnik ND, Donelan K, Lagu T, Campbell EG. Physicians' Perceptions Of People With Disability And Their Health Care. Health Aff (Millwood). 2021 Feb;40(2):297-306. doi: 10.1377/hlthaff.2020.01452. PMID: 33523739; PMCID: PMC8722582.
14) Kuzma-Kozakiewicz, M. ∙ Andersen, P.M. ∙ Ciecwierska, K. An observational study on quality of life and preferences to sustain life in locked-in state. Neurology. 2019; 93:e938-e945
15) Tammes P, Morris RW, Murphy M, Salisbury C. Is continuity of primary care declining in England? Practice-level longitudinal study from 2012 to 2017. Br J Gen Pract. 2021;71(707):e432-e40
Thank you for this excellent submission. A few points from my experience as as a family witness to a Canadian MAID death and academic now writing about the issue:
- Proactive offers are not just reported in Canada, they are recommended by the main MAID provider association and are policy in many healthcare facilities and jurisdictions. Patients even remotely prospectively eligible may be asked multiple times by different staff, not just by doctors, if they want AD. The rationale is that it is wrong and unethical not to mention treatments for which they may be eligible. Because AD is regarded as a medical therapy, it should be mentioned so every new clinician they encounter, from the triage nurse to new staff on shift changes, ask them. I've heard an account of an oncology ward with a dedicated non-clinician whose main task is to tell the patients about MAID. Often, the materials they provide come from DwD.
- Capacity assessments around AD are not done often in Canada. And there is some limited research that suggests some AD clinicians consider them a waste of time. There are also recordings of AD clinicians discussing the merits of lowering capacity with sedation to lower resistance to AD. And there are indications of an increasing ritualisation of the practice or the view that AD is a kind of party, so patients (incl. my father) are permitted to drink alcohol on top of whatever possibly incapacitating medication they may be taking before they are asked to give their final consent.
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An excellent summary of the likely outcomes should this bill pass.
A slightly wider non-medical perspective - the purpose of law-making (in general) is to protect the vulnerable from the strong - not sure this legislation will achieve that, possibly quite the opposite.