Note: This article is written by Liz Sayce. The British House of Lords will be debating the assisted dying bill on October 22, sponsored by Baroness Meacher.
The Meacher Bill - The complexity of addressing mental capacity and mental ill-health
The Bill and its safeguards
 |
| Liz Sayce |
The attending doctor and independent doctor involved would need to be similarly satisfied of the person’s mental capacity. If they have doubt, they must refer the person for assessment to a specialist (any registered psychiatrist[1]) and take account of any opinion given.
The Bill also states that the Secretary of State may issue Codes of Practice on issues including assessment of mental capacity; and taking account of depression and other psychological disorders that may impair a person’s decision-making (2 distinct topics, in one or more Codes).
On the face of it these sound like sensible safeguards; but they raise significant questions, some practical, some much more fundamental.
The fundamental challenge of providing safeguards linked to depression and other mental health challenges in the context of assessing capacity
The interaction between mental health challenges (‘psychological disorders’) and mental capacity is complex. Wesseley’s recent review of the Mental Health Act[2] attempted to address its complex relationship with the Mental Capacity Act but there remain unresolved issues.
Assessing capacity in someone with both terminal illness and depression is not straightforward. Depression is common amongst people who are terminally ill: indeed a diagnosis of terminal illness is the kind of major loss that can trigger depression. A desire for suicide is a major symptom of depression, but it may also be a well-thought-through response to impending death. Weir argues that it is very hard to distinguish between the two[3]. The person may be motivated by a combination of the two, in which case, how does the assessor decide whether the person’s desire to die is coloured more by depression or more by their rational response to terminal illness? And how do assessors across the country do so consistently?
In addition, depression tends to fluctuate, which presents both challenges in assessing what is truly the person’s ‘settled will’ - and opportunities to support people through their times of despair: with treatment and support, the wish to die can be ameliorated even if the prognosis is short[4]. Price et al (2014)[5] summarise the research evidence as follows:
Depression is common in palliative care[6] and desire for hastened death is strongly associated with depression in palliative populations[7]. In Oregon it has been shown that depression is not always appropriately identified in patients requesting assisted suicide[8]. There is evidence to suggest that treatment of depression can reduce the wish for hastened death[9]
Even if the wish to die is coloured by depression, it is perfectly possible that she or he would still be assessed as having the capacity (depending on the definition used – see discussion below). Many people experiencing depression or other mental health challenges meet the ‘capacity’ criteria of the Mental Capacity Act: they are quite able to understand information, weigh up options and communicate a decision on life issues large and small.
It is not straightforward to remove autonomy just because someone has depression; indeed it could be a case of disability discrimination if someone with depression, with capacity, were denied a ‘treatment’ option just because of their impairment (depression). If, as seems likely, large numbers of people with mental health challenges would be considered to have the capacity, then the apparent safeguard for people with depression rather melts away.
It is also not clear that the attending independent doctors would always refer effectively for a capacity assessment. The Royal College of Psychiatrists pointed out that many doctors do not know how to assess for the presence of depression in people who are terminally ill[10].
The (potential) Code topic of ‘taking account of depression and other psychological disorders that may impair a person’s decision-making may sound like a safeguard that is additional to the (separately listed) safeguard of assuring that the person has mental capacity. However, the legal question (as laid out in this Bill) is simply whether the person has the capacity to make this major decision. Therefore the ‘depression’ safeguard appears to be a subset of the ‘capacity’ safeguard - in effect a reminder to think about the impact of psychological disorders (alongside learning disability, dementia or other potential sources of incapacity) when assessing mental capacity to decide.
This would face mental health services and voluntary sector partners with a challenge. Should they sustain their long-standing commitment to prevent suicide amongst people experiencing mental health problems wherever possible, driven by a national policy agenda that has set targets for suicide reduction and ensured that every local area has an all-age multi-agency suicide prevention plan in place? [11] Should multiple agencies always start by reaching out to people who are seeking to die, listening, valuing them, supporting them to want to live? Or should they accept that for the sub-set of people with mental health problems who also have a terminal illness, the one question is whether they have the capacity to decide and have made a decision – in which case, would they ditch the whole approach to suicide prevention in favour of autonomy?
This dilemma brings into sharp focus some of the well-known contradictions between Mental Health and Mental Capacity Law. Under Mental Health law, someone who DOES have the capacity to make decisions can nonetheless be detained and treated against their will if they have a mental disorder and certain risk criteria are met. It seems possible that under this Bill someone could be given psychiatric treatment against their will – ie denied autonomy – but nonetheless have the right to assistance to die as long as they met the definition of mental capacity.
Much depends on how mental capacity is defined and assessed. Price et al[12] note that where the ‘bar’ is set – on a continuum from a basic cognitive capability through to a full understanding of context and implications – has not been settled in jurisdictions with assisted dying legislation. Different clinicians set the bar at different points, influenced by factors including their own values. In a survey of US forensic psychiatrists, those with ethical objections to assisted suicide recommended higher thresholds for competence and a more extensive review of the decision [13]. The Mental Capacity Act requires that clinicians first assume capacity and have to demonstrate a LACK of capacity to act in someone’s best interests. The Mental Capacity Act does not provide a clear framework for deciding whether someone DOES have the capacity to make the major life and death decision of assisted suicide.
The Bill does not begin to address these dilemmas. It may gently imply that taking account of depression will offer safeguards, but these would risk being paternalistic if they applied to people with capacity (however defined). As drafted they may turn out to be a chimaera.
In addition, there may be a question about whether some mental health problems ARE terminal illnesses. Someone with advanced anorexia, for instance, maybe very reasonably expected to die within 6 months. Treatment options may have been exhausted. She or he might or might not have the mental capacity to decide – but if they did, is there any reason they should not be assisted to die? The same could potentially apply to someone with severe depression who has not responded to treatment and makes repeated suicide attempts. In a climate of commitment to ‘parity of esteem between mental and physical ill-health, a non-discriminatory case could be made for accepting some people with mental health problems (and no other terminal illness) for assisted dying.
Finally, the Bill suggests another potential Code topic, on the information on treatment, support and end of life care that would be made available to the person. There is no requirement for actual availability of mental health support or end of life care – just a potential requirement to inform people of what does exist. This is a weak safeguard for people with mental health challenges in a context in which there are huge gaps and delays in getting mental health support: the Mental Health Foundation, for instance, estimates that 85% of over-50s with depression receive no help at all from the NHS[14]. There are also of course no guarantees in the Bill of support with social isolation, financial challenges or inappropriate housing. These social determinants make mental health challenges (including suicidal depression) more likely in the first place; and once people have mental health problems, such social problems tend to intensify, in a vicious cycle[15]. Surveys by the CQC of the experience of people receiving community mental health support consistently find that over 40% report that they would have liked support with finance, benefits and employment but did not get them[16]. It would be quite possible for people to develop depression in the context of major social problems, subsequently, become terminally ill, get no support with their isolation and poverty and opt to die while the opportunity to intervene with multi-faceted support went unaddressed.
Specific points
On mental capacity assessments, the attendant and independent doctors must seek an opinion from a registered psychiatrist if there is any doubt about the person’s capacity. It is not clear, though, that every registered psychiatrist has the necessary assessment skills: many psychiatrists are much more familiar with assessing criteria for detention or treatment under the Mental Health Act (which do not include the mental capacity to make decisions) than criteria under the Mental Capacity Act. This increases the risk of inconsistent assessments of capacity. Assessing capacity amongst people with learning disabilities and autistic people has been found, in the Netherlands, to be inconsistent between clinicians and to be influenced by views of disabled people’s lives[17].
Secondly, we know that existing Codes of Practice are not implemented with sufficient effectiveness in relation to people with mental health challenges: the CQC’s 2019 evaluation of compliance with the Code under the Mental Health Act 1983 notes ‘particular areas of concern where we found that the guiding principles were not being routinely implemented to inform practice in the way they should. This was true in fundamental areas such as using the least restrictive approach and involving patients in their own care[18]. ‘Through our review, we have not found evidence that the Code has prompted a substantial change in the way services are empowering and involving people in their care. These are deep-rooted problems of culture and practice and we cannot assume that provision of one or more Codes on assisted dying would be sufficient to ensure that real engagement would take place with people with mental health challenges at a time when they were facing major decisions about their life and death. Similarly, the post-legislative review of the Mental Capacity Act found that the Act was not being implemented in the way intended and that the duties imposed by the Act were not widely followed.[19]
Conclusion
Parliament should think very carefully about these complexities rather than being reassured by potential Codes and safeguards that seem to melt away as they are examined. Ambiguities and complexities leave doors open to subsequent legal interpretation, challenge and legislative amendment that could expand the remit of this Bill and erode the apparent (but often flimsy) safeguards. There is a tension between the equality of disabled people and safeguards that has not been grappled with in this Bill. If there is an assumption that the presence of depression or other mental health challenges means someone should be denied autonomy, that flies in the face of the Mental Capacity Act and the equality of disabled people. If that is not the assumption, then the safeguards are very narrowly delimited, the Bill seems to drive a coach and horses through the mental health policy objective of suicide prevention and there may be risks of following countries like Belgium in making assisted dying increasingly available to people with mental health problems, and the Netherlands, where people with a learning disability and autistic people are being offered euthanasia by doctors who are unable to make consistent, competent capacity assessments[20].
People living with mental health challenges, learning disabilities, dementia and other cognitive impairments should be at the heart of a deeper discussion about assisted dying than has informed this Bill to date.
Liz Sayce. October 2021
This note is written in a personal capacity and does not reflect the views of any organization.
Liz Sayce chaired the Commission for Equality in Mental Health, hosted by the Centre for Mental Health, 2019-21. She is a Visiting Senior Fellow at the London School of Economics and was Chief Executive of Disability Rights UK (and its legacy charity Radar) from 2007-2017, where she led work for equal participation for all, through programmes on independent living, career opportunities and shifts in cultural attitudes and behaviour. Liz is a Trustee of ADD (Action on Disability and Development), Vice-Chair of the Social Security Advisory Committee and a member of the Disability Advisory Committee of the Equality and Human Rights Commission. She has been a Non-Executive Director of the Care Quality Commission and a member of the Healthwatch England Committee. With a background in mental health and disability policy, previous roles include Director of Policy and Communications at the Disability Rights Commission and Policy Director of Mind. She led an Independent Review into disability employment programmes for Government in 2011 and has published widely on mental health, disability and social participation. She undertook a Harkness Fellowship in the USA resulting in a book (From Psychiatric Patient to Citizen, 2000 – updated in 2016).
[1] A doctor ‘registered in the specialty of psychiatry in the Special Register kept by the General Medical Council’ according to the Bill
[2] https://www.gov.uk/government/...
[3] https://www.apa.org/monitor/20...
[4] Royal College of Psychiatrists Presidents’ Blog: Assisted suicide for the terminally ill 26/7/2014
[5] Price et al.: Concepts of mental capacity for patients requesting assisted suicide: a qualitative analysis of expert evidence presented to the Commission on Assisted Dying. BMC Medical Ethics 2014 15:32. doi:10.1186/1472-6939-15-32
[6] Rayner L, Lee W, Price A, Monroe B, Sykes N, Hansford P, Higginson IJ, Hotopf M: The clinical epidemiology of depression in palliative care and the predictive value of somatic symptoms: cross-sectional survey with four-week follow-up. Palliat Med 2011, 25(3):229–241
[7] Price A, Lee W, Goodwin L, Rayner L, Humphreys R, Hansford P, Sykes N, Monroe B, Higginson IJ, Hotopf M: Prevalence, course and associations of desire for hastened death in a UK palliative population: a cross-sectional study. BMJ Support Palliat Care 2011, 1:140–148
[8] Ganzini L, Goy ER, Dobscha SK: Prevalence of depression and anxiety in patients requesting physicians' aid in dying: cross sectional survey. BMJ 2008, 337:a1682
[9] Breitbart W, Rosenfeld B, Pessin H, Kaim M, Funesti-Esch J, Galietta M, Nelson CJ, Brescia R: Depression, hopelessness, and desire for hastened death in terminally ill patients with cancer. JAMA 2000, 284(22):2907–2911
[10] ODOC BMA Briefing.pdf
[11] https://assets.publishing.serv...
[12] Op cit
[13] Ganzini L, Leong GB, Fenn DS, Silva JA, Weinstock R: Evaluation of competence to consent to assisted suicide: views of forensic psychiatrists. Am J Psychiatry 2000, 157(4):595–600
[14] https://www.mentalhealth.org.u...
[15] Sayce L (2016) From Psychiatric Patient to Citizen Revisited. Palgrave
[16] https://www.cqc.org.uk/publica...
[17] Tuffrey-Wijne I, Curfs L, Finlay I, Hollins S (2018) Euthanasia and assisted suicide for people with an intellectual disability and/or autism spectrum disorder: an examination of nine relevant euthanasia cases in the Netherlands (2012-2016). BMC Medical Ethics 19:17; and Tuffrey-Wijne I, Curfs L, Finlay I, Hollins S. (2019) “Because of his intellectual disability, he couldn’t cope.” Is euthanasia the answer? Journal of Policy and Practice in Intellectual Disabilities 16 (2), 113-116
[18] https://www.cqc.org.uk/sites/d...
[19] House of Lords - Mental Capacity Act 2005: post-legislative scrutiny - Select Committee on the Mental Capacity Act 2005 (parliament.uk)
[20] Tuffrey-Wijne e al op cit
As a psychiatrist in the U.S., I appreciate the posting by Ms. Sayce. The issue of "mental capacity" is fraught, indeed. As my colleague, Dr. Cynthia Geppert and I have argued in an article we will be submitting to Psychiatric Times, most cognitively-based tests of "mental capacity" are likely to miss subtle mood impairments that undermine what we call "rational autonomy" (and which Dr. Laura Weiss Roberts calls "authentic voluntarism"). These emotional states include, e.g., demoralization, despair, and hopelessness, which do not necessarily correlate with formal psychiatric disorders, such as major depressive disorder. Yet these emotional states can compromise and color the patient's judgment, and complicate decision-making capacity during a terminal illness. We will have much more to say on this issue shortly.
ReplyDeleteRonald W. Pies, MD
For further reading:
Levin TT, Applebaum AJ. Acute cancer cognitive therapy. Cogn Behav Pract. 2014;21(4):404-415.
Charland, L. Lemmens, T, and Wada, K, Decision-Making Capacity to Consent to Medical Assistance in Dying for Persons with Mental Disorders (May 25, 2016). (2016) (open volume) Journal of Ethics in Mental Health 1-14, Available at SSRN: https://ssrn.com/abstract=2784291
Roberts LW. Informed consent and the capacity for voluntarism. Am J Psychiatry. 2002 May;159(5):705-12. doi: 10.1176/appi.ajp.159.5.705. PMID: 11986120.