The future of Advance Decision
Making in the Mental Health Act
Lucy Stephenson, Tania Gergel,
Gareth Owen, Alex Ruck Keene,
Alexandra Pollitt, Benedict Wilkinson May 2019
About this note
‘Advance decision making’ refers to people planning for a future when they may become
unwell. At present, people living with mental illness in England and Wales have little
reassurance that advance decisions they make about their own future mental health
treatment will be respected, even those decisions made during times when they are
well, which are supported by professionals and family. This is in sharp contrast to those
making advance decisions about treatment for physical health problems. In this case the
Mental Capacity Act 2005 ensures all valid and applicable advance decisions to refuse
medical treatments are respected and preferences are acknowledged. This inequality
was highlighted and addressed by the Independent Review of the Mental Health Act,
which formulated a recommendation for statutory provision for mental health advance
decision-making in the form of ‘Advance Choice Documents’. This recommendation
has been accepted by government. Plans for Advance Choice Documents were drawn
from a report submitted by the Mental Health and Justice Project.
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This report argued
that legal reform should enable a culture shift towards mental health advance decision-
making which is collaborative, encourages treatment requests, as well as appropriate
treatment refusal, and respects service user expertise borne of lived experience. Outlined
below is the rationale for implementing Advance Choice Documents, answers to some
of the concerns around creating statutory provision, and implementation suggestions for
those involved in law reform.
About Advance Choice Documents [ACDs]
ACDs oer a number of benets. First and foremost, they are a vital step towards
ensuring that people living with mental illness have choice and autonomy over their
care. Secondly, they resolve a fundamental inequality between physical and mental
healthcare. While there is provision for those with physical health problems to use the
Mental Capacity Act (MCA) to make advance decisions about their care (e.g. to refuse
medical treatment), the same provisions are not legally binding for mental illness if the
individual is admitted to a mental health hospital under the Mental Health Act 1983
(MHA). Thirdly, they bring the UK towards parity with other jurisdictions which have
adopted similar changes, notably Scotland, Northern Ireland and India.
At present, people
living with mental illness
in England and Wales
have little reassurance
that advance decisions
they make about their
own future mental
health treatment will be
respected.”
THE
POLICY
INSTITUTE
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Surveys of people
with severe mental
illness as well as
clinicians, consistently
demonstrate the
majority of both are in
favour of provision for
mental health advance
decision-making.”
The move to greater reliance on ACDs is not merely based upon principle. Current
evidence suggests that:
a. There is service user demand for mental health advance decision-making
Surveys of people with severe mental illness as well as clinicians, consistently
demonstrate the majority of both are in favour of provision for mental health advance
decision-making.
b. The content of mental health advance decisions is clinically feasible
Studies examining what services users with severe mental illness want advance decisions
to be about, in a variety of international contexts, consistently nd that collaborative
models are popular, total treatment refusal is rare and expression of preferences around
An example of how Advance Choice Documents could work in
practice
Sam was diagnosed with Bipolar aged
21 and is now 40. He works in IT and has
a partner and two children. Sam has
experienced multiple episodes of very
high mood (mania) and depression. When
manic, Sam often spends vast amounts
of money and behaves bizarrely in public
including running around naked. When
unwell he nds it dicult to engage with
mental health services and has had multiple
non-voluntary hospital admissions. It is
dicult for Sam and his family to cope with
the aftermath of these episodes, Sam is
desperate to nd a way to take control of
his illness and its consequences.
Like many people with his mental health
condition, Sam acknowledges his mental
capacity to make decisions about
treatment uctuates depending on his
mental health. When he is well, he works
with his psychiatrist and partner to create
an ‘advance choice document’, which
includes early signs of relapse and loss of
decision-making capacity. It also covers
signs that show he is likely to need hospital
admission to prevent the harm he fears,
and in addition makes certain requests
about treatment, including his preferred
medications and a refusal of a medication
that has given him severe side eects in the
past.
The next time Sam starts to become
unwell, his partner alerts the mental health
crisis team. This team have not met Sam
before, but nd the document helpful in
creating Sam’s care plan. Although Sam
is compulsorily admitted to hospital, he
receives his preferred medications and
is discharged earlier than with previous
admissions.
Reecting on this episode, Sam and his
family feel relief at having avoided some
of the damaging behaviours Sam exhibits
when unwell. Although still dicult, Sam
found admission less distressing than on
previous occasions. Sam feels more in
control of his Bipolar and has more peace
of mind that future crises can be managed
well. Sam’s relationship with mental health
services is improved and he feels condent
to contact them at an earlier stage in any
future relapses. Sam and his team hope
that this will reduce the number of future
admissions to hospital and improve his
general mental health.
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treatment is common e.g. refusal of, or requests for, specic medications. Clinicians rate
a large majority of decisions as feasible and informative.
c. Mental health advance decision-making holds potential to reduce compulsory
admissions
Overall, mental health advance decision-making tools have been shown to reduce the
number of compulsory admissions. Success in reducing compulsory admissions is likely
to be dependent on process related factors such as clinical buy-in.
Anxieties around ACDs
Although many see ACDs as a timely response to stakeholder demand and human rights
concerns, ACDs also raise a series of anxieties, particularly in light of similar policy
changes in other countries.
2
These anxieties fall into three main ‘areas of tension’:
1. The complexity of current provision which disincentivises use by clinicians and
service users
The current complexity may contribute to the lack of condence and knowledge
amongst key stakeholders (service users, their friends and family, clinicians) who
may benet from the use of advance decision making. The addition of statutory
ACDs may add a further layer of complexity into this picture. However, clear
statutory rules, codes of practice and service user and clinical guidelines would
reduce complexity, mobilise resources and help clinicians and service users feel
more certain about ACD use.
2. Diculties in creating separate provision for “psychiatric patients” vs “medical
patients”
English and Welsh Law has implicitly dierentiated between “medical” and
“psychiatric” patients. The Mental Capacity Act 2005 (MCA) was built from case
law around ”medical patients” and medical decisions concerning physical health.
For the ”psychiatric patient” there was the legal concept of ”unsound mind” and
the MHA outlines the circumstances under which a person with mental disorder
may be involuntarily detained and treated and their liberty safeguarded.
These legal distinctions may be unhelpful. We know, for instance, that “medical”
and ”psychiatric” problems frequently co-exist, for example when medical
complications follow psychiatric treatments (e.g. metabolic syndrome) and when
there are psychiatric complications arising from medical conditions (e.g. delirium).
There are also ethical concerns over why someone’s status alone as a ”psychiatric
patient” should exclude the right to self-determination, as well as theoretical and
practical problems with trying to separate the functions of the mind from the body.
However, certain dilemmas, particularly public interest concerns (discussed below),
occur more commonly in mental health settings and demand tailored provision to
ensure consistent and safe management.
3. Public Interests
There are three key areas of public concern that should be considered when
introducing statutory ACDs. They centre around problems which may be caused
by refusal of medical treatment for mental disorder. However, as outlined above,
Overall, mental health
advance decision-
making tools have been
shown to reduce the
number of compulsory
admissions.”
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evidence suggests refusal of all treatment is very rare, and this is an important aspect
of public communication around ACDs.
i. The potential for third party harm. Overall this is a rare occurrence in mental
health care contexts but demands consideration. For example, if a person with a
history of exhibiting violent behaviour when unwell wished to use an ACD to refuse
mental health treatment.
ii. Public cost. In some other jurisdictions, legislation which provides for refusal of
treatment but does not permit refusal of hospital admission has resulted in cases of
prolonged inpatient admission at signicant public cost.
iii. Ethical controversy. Cases of advance refusal of treatment for suicide attempts
arising in the context of mental health problems have raised particular ethical
complexity and public concern.
The proposed safeguards for ACDs in England and Wales address these issues.
Advance refusals would be respected by mental health services unless: (i) there is no
other clinically appropriate treatment and a second opinion doctor is satised this is
the case, or (ii) that the treatment is immediately necessary to prevent death, serious
deterioration, violent behaviour, self-harm or serious suering.
Competing values
Policy-making on advance decision-making in mental health takes place within a
system where there are competing values: the extent to which legal rules should regulate
mental health compulsory treatment, and the extent to which individual autonomy
should be the primary consideration. Figure 1 illustrates these values and policy
positions associated with them.
Evidence suggests
refusal of all treatment
is very rare, and this is
an important aspect of
public communication
around ACDs.”
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The recommendations in the next section aim to shift the balance towards maximising
individual autonomy whilst retaining appropriate legal formality (from segment D to
segment B in gure 1). In our view, such a shift allows for:
• More mental/physical health equality on advance decision-making without getting
rid of specialist legislation for mental health contexts.
• More recognition of the role of clinical judgement in advance decision-making whilst
introducing statutory provision and accountability.
• More service user autonomy whilst recognising that public interests exist.
FIGURE 1: STRIKING THE
BALANCE BETWEEN
LEGAL FORMALITY AND
INDIVIDUAL AUTONOMY
C
A
Individual autonomy
Legal formalityLegal formality
B
D
The committee for the UN Convention on the Rights of
Persons with Disabilities (where disability includes mental
disability or disorder) holds that states should abolish all
laws for compulsory mental health treatment or treatment
without consent and that treatment decisions should
always be based on the will and preferences of the person
with disability.
Many states (e.g. Iceland, several developing countries)
have no specic mental health law. Rather doctors are
broadly accepted as having the expertise and authority
to treat people with mental disabilities/disorders with or
without consent as needed. Colloquially this may be known
as ‘Dr knows best’.
The Mental Health Act 2007 in England and Wales. This
amended the Mental Health Act 1983 and introduced more
legal rules regulating mental health treatment without
consent. It also put a greater value on public protection
and broadened the mental disorder criteria for detention.
Various models for disability/disorder-neutral law have
been put forward. The Mental Capacity (Northern
Ireland) Act 2016 attempts this with an assessment of the
individual’s decision-making capacity and, if found absent,
guides the surrogate decision-maker to act in a way that
the person would have wanted were they to have the
decision-making capacity.
(maximum)
(maximum)(minimum)
Individual autonomy
(minimum)
Horizontal axis – legal formality. This axis represents the extent (max to min) to which it is considered valuable for there to be legal rules regulating mental health
compulsory treatment or treatment without consent.
Vertical axis – individual autonomy. This axis represents the extent to which individual autonomy is regarded as the primary value. Public health, medical or clinical
expertise/authority or even national security are values which may pull in the opposite direction.
Implemented
recommendations
would mean a shift
from D to B
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Recommendations
Three key principles should underpin law reform for mental health advance
decision-making
Reform in this area should:
1. Enable a culture change in relation to advance decisions made with capacity such
that they are: (i) developed within mental health services, and (ii) involve joint
working on mental health requests as well as potential refusals.
Historically, anti-psychiatry movements have been inuential in shaping discussions
of advance decision-making in mental health and this has emphasised advance
refusal. However, evidence suggests that service users would like to make advance
decisions in collaboration with mental health services. In addition, they would like
to use documents such as ACDs as vehicles to request treatment that they know has
been helpful to them in previous crises as well as make specic refusals.
2. Enable mental health Advance Decisions to Refuse Treatment (ADRT) with
limitations reecting legitimate public interests.
The current lack of parity between statutory provision for mental and physical
health advance decision-making is ethically problematic and a human rights issue.
ACDs which enable the refusal of medical treatment for mental disorder will be an
important step towards reducing this inequality, but as noted above there may be
particular concerns around this in mental health care contexts. Providing certain
limitations around their contents can mitigate these concerns (see page 4).
3. Give service users more insurance that well thought-through advance decision-
making documents will be respected.
Many people with severe mental illness experience uctuating capacity (as
exemplied in the case above). While they may lose the capacity to make
treatment decisions during severe episodes of illness, when well they have full
capacity to reect on previous episodes of illness and use this experience to guide
recommendations for future treatment. Fluctuating decision-making capacity can
provide opportunities for well thought-through mental health ACDs borne of actual
experience and responsive to learning. Formal provision for ACDs is required to
assure service users and clinicians that making such detailed plans is worthwhile.
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A range of stakeholders need to be involved to make ACDs a success
The government’s review of the MHA creates an important opportunity to modernise
advance decision-making for mental health. The introduction of statutory ACDs will be
a vital step forward in achieving parity across mental and physical healthcare. However,
it is unlikely that statutory change alone will be sucient for a successful policy. For this
we would further suggest that:
1. The MHA in its principles should reinforce the duty of the NHS to provide for
mental health and include a reference to ACDs.
2. The MHA should empower a specialised body for England and Wales (similar
to the Mental Welfare Commission in Scotland) to facilitate awareness of ACDs,
provide case review and guideline development.
3. Professional bodies such as the Royal College of Psychiatrists, the Royal College
of Nursing, the British Association of Social Workers and the British Psychological
Society should be involved in the passage of the changes and take a lead in
professional training and development.
4. The Department of Health and Social Care should provide Mental Health Trusts
with up to date models of ACD implementation.
5. Leading mental health and service user-led charities should participate in the
development of ACD templates.
References
1. More detail on these recommendations can be found in the following article which
summarises the report submitted to the Independent Review of the Mental Health
Act: G. S. Owen, T.Gergel, L. A. Stephenson, O.Hussain, L. Rifkin, A. Ruck
Keene, Advance decision-making in mental health – suggestions for legal reform in
England and Wales. International Journal of Law and Psychiatry (2019) 64; 162-
177 (Open Access) https://mhj.org.uk/2019/04/17/advance-decision-making-in-
mental-health-suggestions-for-legal-reform-in-england-and-wales/
2. http://www.mentalhealthalliance.org.uk/news/2017-a-mental-health-act-t-for-
tomorrow.html
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