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 Bill states clearly
that before assistance to die could occur the High Court (Family Division)
would need to be satisfied that a person seeking assistance to die has the
mental capacity to make that decision.
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
