Best interests, patient participation and the Mental Capacity Act 2005.
ABSTRACT This is a pre-copy-editing, author-produced PDF of an article accepted for publication in Medical Law Review following peer review. This article analyses the best interests standard as applied in the context of healthcare decisions in light of the participative elements introduced by the Mental Capacity Act (EW). It begins with a brief consideration of the best interests standard as it developed at common law. The article shows that, while the courts gradually developed a more systematic approach to best interests, judges remained largely resistant to facilitating participation by patients lacking capacity. The article examines the changes brought about by the MCA in this regard. It explores the policy basis for this aspect of the MCA and shows why the participative model represents the most appropriate response to decision-making for people lacking mental capacity. The article argues that notwithstanding the attractions of the MCA’s participative framework from a policy perspective, this approach to best interests gives rise to important practical and conceptual questions, which the article then explores. The article examines the difficulties in delivering genuine participation at a practical level and identifies the risk that patient participation will become a tokenistic endeavour.
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ABSTRACT: This paper explores the legal position of the off-label prescription of antipsychotic medications to people with dementia who experience behavioural and psychological symptoms of dementia (BPSD). Dementia is a challenging illness, and BPSD can be very difficult for carers to manage, with evidence that this contributes to carer strain and can result in the early institutionalisation of people with dementia. As a result, the prescription of antipsychotic and other neuroleptic medications to treat BPSD has become commonplace, in spite of these drugs being untested and unlicensed for use to treat older people with dementia. In recent years, it has become apparent through clinical trials that antipsychotic drugs increase the risk of cerebrovascular accident (stroke) and death in people with dementia. In addition, these types of medication also have other risk factors for people with dementia, including over-sedation and worsening of cognitive function. Drawing on recent questionnaire (n = 185), focus group (n = 15), and interview (n = 11) data with carers of people with dementia, this paper explores the law relating to off-label prescription, and the applicability of medical negligence law to cases where adverse events follow the use of antipsychotic medication. It is argued that the practice of off-label prescribing requires regulatory intervention in order to protect vulnerable patients.Medical Law Review 10/2012; · 0.73 Impact Factor
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ABSTRACT: This paper explores the ‘right to autonomy’ for people with dementia. The provisions of the Mental Capacity Act 2005 (MCA) sought to allow more decisions to be made by those who are situated at the margins of capacity. This paper explores conceptual approaches to autonomy to highlight the limitations of contemporary regulation and the shortcomings of legal understandings of autonomy. Discourse analysis is used to analyse judicial language in a key recent case about where a person with dementia should live. It is argued that how the MCA approach has been operationalised by the courts does little to facilitate decision making for people with dementia. Possibilities for autonomy at the margins of capacity may be closed down through the discursive strategies used to determine disputes about the best interests of people with dementia. I argue that relational autonomy should be revised to include insights from person-centred care in order to empower decision making for people with dementia, and that judicial decision-makers should engage with the relationality of autonomy at the margins of capacity.Journal of Social Welfare and Family Law 12/2012; 34(4).
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ABSTRACT: As the number of people being cared for by relatives and friends rises, it is vitally important to examine whether legal frameworks surrounding care and treatment sufficiently account for the realities of informal caring. This paper undertakes such an analysis through the lens of care ethics, arguing that relational and contextual aspects of caring ought to be brought further to the fore. The Mental Capacity Act 2005 forms the central focus of criticism and it is suggested that the legislation and case law surrounding best interests decisions fails to heed the interdependence which permeates informal caring. In contrast to earlier care theories, however, the importance of retaining a focus on the rights and capabilities of individuals within the web of caring relationships is emphasised.Journal of Social Welfare and Family Law 04/2014; 36(2).
Electronic copy available at: http://ssrn.com/abstract=1961614
BEST INTERESTS, PATIENT PARTICIPATION AND THE MENTAL
CAPACITY ACT 2005*
(2009) 17 Medical Law Review 1-29
For many hundreds of years, the law has been concerned with the task of making
decisions for adults lacking legal capacity.1 For much of this time, these decisions
have been made on the basis that they were in the best interests of the person in
question.2 With the advent of the declaratory jurisdiction in 1990,3 the best
interests standard came to be widely used in the healthcare context. However, the
application of the standard received relatively little detailed analysis and the
conceptual basis for the standard has remained, for the most part, unexplored.
Since the enactment of the Mental Capacity Act 2005 (“MCA”), the best interests
standard now operates within a detailed legislative framework.4 Of particular
interest are the participative elements in the MCA’s approach to best interests,
represented by the Act’s requirement that the person lacking capacity should
participate in the process of determining her5 best interests6 and the recognition
which the Act affords to the present and past wishes and feelings of the person
*This article has benefited greatly from discussions with Professor Phil Fennell, Cardiff Law School;
Professor John Mee, Law Faculty, University College Cork and Professor Sidney Watson, Law School,
St Louis University, Missouri. Any views expressed and any errors are my own.
1 The first formal statement of the parens patriae jurisdiction may be found in the 13th century
“statute” de Prærogativa Regis 17 Edward II, c.9 and c.10. See further J. Seymour “Parens Patriae
and Wardship Powers: Their Nature and Origins” (1994) 14 O.J.L.S. 159.
2 The term “best interests”, now associated with decision-making for people lacking capacity, was not
used in the very early cases. Instead, the focus was on the “benefit” to the person. L. Shelford
Practical Treatise on the Law Concerning Lunatics, Idiots, and Persons of Unsound Mind (Philadephia:
JS Littell, 1833), pp. 129-130 cites a number of such cases: see In re Bird, 9 March 1827; In re Baker,
20 June 1827; and In re Harris, 9 August 1827.
3 The declaratory jurisdiction was established in Re F: (An Adult: Sterilisation)  2 A.C. 1 as an
replacement for the parens patriae jurisdiction which had been abolished in 1959 by a combination of
the Revocation of the Royal Warrant under the Sign Manual and section 1 of the Mental Health Act
1959. The House of Lords held that the common law doctrine of necessity allowed the medical
treatment of adults who were unable to give personal consent. For the doctrine to apply, the medical
intervention had to be in the best interests of the adult lacking capacity and a formal application
could be made to the Family Division of the High Court for a declaration to this effect.
4 The MCA commenced gradually over the course of 2007 with the main body of the Act coming fully
into force on 1 October 2007 (see the Mental Capacity Act 2005 (Commencement No 2) Order 2007
5 For convenience, I have adopted the female pronoun throughout this article.
6 Section 4 (4) of the MCA.
Electronic copy available at: http://ssrn.com/abstract=1961614
lacking capacity and to the beliefs and values that would have been likely to
influence her decision if she had had capacity.7
This article analyses the best interests standard as applied in the context of
healthcare decisions in light of the participative elements introduced by the MCA. It
begins with a brief consideration of the best interests standard as it developed at
common law. The article shows that, while the courts gradually developed a more
systematic approach to best interests, judges remained largely resistant to
facilitating participation by patients lacking capacity. The article then examines the
changes brought about by the MCA in this regard. It explores the policy basis for
this aspect of the MCA and shows why the participative model represents the most
appropriate response to decision-making for people lacking mental capacity.
Notwithstanding the attractions of the MCA’s participative framework from a policy
perspective, this approach to best interests gives rise to important practical and
conceptual questions, which the article then explores. The article examines the
difficulties in delivering genuine participation at a practical level and identifies the
risk that patient participation will become a tokenistic endeavour. It also shows
that, at a conceptual level, the patient’s participation in the process introduces a
subjective element into a process which had hitherto sought to be objective in
nature. Therefore, participation may give rise to potential conflicts between a
patient’s views and what would “objectively” be seen as her best interests. Further,
because the participative model favoured by the MCA recognises both the past and
the present wishes and feelings of the patient lacking capacity, there may be a
conflict between the patient’s own pre- and post-incapacity wishes. It will be
argued that these conflicts are an inevitable feature of the participative model
adopted by the MCA and that the fact that they arise does not diminish the value of
the MCA approach. However, these underlying issues must be recognised and dealt
with if the participative framework in the MCA is to have more than rhetorical
II. BEST INTERESTS AT COMMON LAW: THE DEVELOPMENT OF THE
Although frequently applied in practice, the best interests standard has often been
treated as if its application required no more than general good will on the part of
the decision-maker. This laxity is not unique to the law. Ethicists Buchanan and
Brock describe a similar omission in ethical theory where, they note, “philosophical
work has centered on the rights of competent persons, and the grounding of these
rights in utility or in autonomy, rather than on decisions for those who are
7 Section 4 (6) of the MCA.
8 A. Buchanan and D. Brock Deciding for Others: The Ethics of Surrogate Decision Making (Cambridge:
Cambridge University Press, 1989), p. 3.
The lack of a detailed conceptual decision-making framework is evident in the
foundational decision of the House of Lords in Re F (Mental Patient: Sterilisation).9
Although careful to clarify the formal legal basis for decision-making, the House of
Lords dedicated little attention to the values underlying the law. The House of
Lords confirmed the applicability of the best interests test in determining if medical
treatment (in this case, a sterilisation procedure) should be given but, other than
identifying the relevance of medical best interests,10 it did not specify the test to be
applied in any detail.11 Nor did the House of Lords raise the issue of the rights of the
person lacking capacity.12 The House of Lords also stated that the Bolam test for
medical negligence13 applied to determinations of best interests.14 This meant that the
task of determining best interests was effectively delegated to the medical profession.15
The extent of judicial delegation of responsibility is evident in Re MB (An Adult:
Medical Treatment),16 where the Court of Appeal held that treatment could be
imposed on the patient, by force if necessary, provided that the treatment was in her
best interests. The Court considered that the extent of the force to be used was to be
judged in each individual case by the healthcare professionals.17
A. Towards a More Sophisticated Approach
Notwithstanding this unpromising beginning, the expanding declaratory
jurisdiction18 facilitated the subsequent development of a more sophisticated
conception of best interests. The decision of the Court of Appeal in Re A (Medical
Treatment: Male Sterilisation)19 shows this more sophisticated standard in
operation, in the context of the proposed sterilisation of a 28 year-old man with
Down’s Syndrome. Dame Butler-Sloss P. confirmed the view that the best interests
9  2 AC 1. See generally M. Donnelly "Decision Making for Mentally Incompetent People: The
Empty Formula of Best Interests" (2001) 20 Medicine and Law 405.
10 Ibid., 55 per Lord Brandon.
11 In Airedale NHS Trust v Bland  A.C. 789, the House of Lords held that the best interests
standard adopted in Re F was also applicable to treatment withdrawal. In relation to a patient in a
persistent vegetative state, the appropriate question was (ibid., 808 per Lord Goff) whether it was in
the patient’s best interests to continue to receive life-sustaining treatment.
12 This accords with the approach taken by the House of Lords in the earlier case of Re B (A Minor)
(Wardship: Sterilisation)  1 A.C. 199.
13 See Bolam v Friern Hospital Management Committee  1 W.L.R. 582. Since Bolitho v Hackney
Health Authority  A.C. 232, the Bolam test incorporates a degree of judicial scrutiny of the
conduct of medical professionals.
14 Re F (Mental Patient: Sterilisation)  2 A.C. 1, 52 per Lord Bridge; ibid., 68 per Lord Brandon;
ibid., 69 per Lord Griffiths; ibid., 78 per Lord Goff.
15 See I. Kennedy “Patients, Doctors and Human Rights” in R. Blackburn and J. Taylor eds Human
Rights for the 1990s (London: Mansell, 1991), pp. 89-90.
16  2 F.C.R. 541.
17 Ibid., 556 per Dame Elizabeth Butler Sloss L.J. The Court did note that the question of force might
have to be considered in depth on another occasion.
18 In addition to the body of healthcare cases, the declaratory jurisdiction was held to cover a range of
personal decisions outside the healthcare context in which it originated: see Re S (Hospital Patient:
Court’s Jurisdiction)  Fam. 1 and Re F (Adult: Court’s Jurisdiction)  3 Fam. 38.
19  1 F.C.R. 193.
test “encompasses medical, emotional and all other welfare issues”.20 She also
separated the assessment of best interests from the Bolam test, rejecting the
suggestion that the duty to act in the patient’s best interests could be conflated with
the professional duty of care.21 With the incorporation of the European Convention
on Human Rights imminent, Dame Butler-Sloss P also noted the impact of patients’
human rights on the application of the standard,22 although she did not discuss in
any detail how the ECHR would apply.23
Re A also saw the Court of Appeal move towards a more systematic approach to the
assessment of best interests. Drawing on the checklist approach advocated by the
Law Commission in its Report on Incapacity,24 Thorpe L.J. adopted a balance sheet,
setting out the actual benefits to be gained from the medical procedure and any
“counterbalancing dis-benefits”.25 He also noted that, in making entries on either
side, the judge should also include a realistic assessment of the possibility that the
loss or gain would occur. It is only if the account is in “relatively significant” credit
that the procedure will be considered to be in the best interests of the individual.26
The balance sheet approach was further formalised in the Practice Direction issued
by the Official Solicitor which noted that the court should assess in percentage terms
the likelihood of the advantages and disadvantages of the procedure occurring.27
B. Judicial Approaches to Participation
In spite of the advances outlined above, important gaps remained in judicial
approaches to best interests. Of particular interest in the current context is the
limited role accorded to patient participation in determining best interests in a
healthcare context.28 Notwithstanding the Law Commission’s inclusion of the
patient’s views in its best interests checklist, this factor was absence from Thorpe
LJ’s balance sheet in Re A. This was in spite of the fact that A had clearly indicated
20 Ibid., 200. This view had already been established in Re Y (Mental Patient: Bone Marrow Donation)
 Fam. 110. See also In re S (Adult Patient: Sterilisation)  2 Fam. 15, 30; Simms v Simms
and Anor; A v A and Anor  E.W.H.C. 2734 (Fam), ; R (Burke) v The General Medical Council
and Others  Q.B. 424, 455-456. See generally P. Lewis “Procedures That Are Against the
Medical Interests of Incompetent Adults” (2002) 22 O.J.L.S. 575.
21  1 F.C.R. 193, 200-201. Dame Elizabeth Butler-Sloss P. reiterated her position in Re SL (Adult
Patient: Medical Treatment)  2 F.C.R. 452 where her argument found the support of Thorpe LJ.
This position was confirmed by Court of Appeal in NHS Trust v A and Anor  E.W.C.A. Civ. 1145.
22 Ibid., 201.
23 The linkage between rights arising under the ECHR and the requirement for patient participation is
discussed further in text to n. 81 infra.
24 Law Com. No 231 (London: HMSO, 1995), para. 3.28.
25 Supra n. 19, 206.
26 Ibid. For examples of the balance sheet approach in operation, see A National Health Trust v C
unreported, High Court (Family Division), 8 February 2000 (in the context of non-consensual
sterilisation); A Hospital NHS Trust v S  E.W.H.C. 365 (Fam.),  (in the context of receipt of a
27 Practice Direction (Declaratory Proceedings: Incapacitated Adults)  1 W.L.R. 325, para 7.
28 Although note the more inclusive approach in a non-healthcare context in Bailey v Warren 
E.W.C.A Civ. 51,  per Arden L.J.
that he did not want the proposed sterilisation.29 Reference to the views of the
person lacking capacity was absent from the list of relevant considerations set out in
the Practice Direction30 and has played a very limited role in subsequent case law.
In the limited number of cases prior to the MCA where courts have referred to the
views of the person lacking capacity in assessing best interests, these views appear
to have had little impact on the decision reached. In Re X (Adult Sterilisation),31
Holman J. had cause to “hesitate” before granting a declaration to permit the
sterilisation of a woman who had significant intellectual disabilities due to Down’s
Syndrome because the woman had said that she would like a baby. Nonetheless, he
went on to authorise the sterilisation notwithstanding the woman’s views. He found
X is quite unable to make any sensible, informed decision for herself, so other
people have to make it for her. Even though subjectively she feels she would
like to have a baby, it remains objectively completely contrary to her (I
emphasise the word ‘her’) best interests to do so.32
In NHS Trust v T,33 Charles J. noted the incapable patient’s reasons for wishing to
refuse a blood transfusion.34 However, he promptly dismissed these reasons and
ordered that the transfusion be carried out.
In both of the above cases, the expert evidence provided to the court regarding the
patient’s best interests was clearly not in accordance with the decision favoured by
the patient herself. Therefore, it is not especially surprising that the views of the
person lacking capacity were not determinative. In contrast to these cases, in Re SS
(Medical Treatment: Late Termination),35 the expert evidence was described as “very
finely balanced”.36 This case concerned an application regarding the late
termination of the pregnancy of a woman who was held to lack decision-making
capacity because of a serious mental disorder. Wall J. included the patient’s
“repeated and powerful insistence” on the termination of her pregnancy in the best
interests ‘balance sheet’.37 He was also highly critical of the Health Authority’s
29 This fact was mentioned by Dame Elizabeth Butler-Sloss P. supra n. 19, 196, although the President
continued by noting the consultant psychiatrist’s view that this was “not an informed no since [the
patient] could not understand the reason for the operation”.
30 Supra n. 27.
31  2 F.L.R. 1124.
32 Ibid., 1128.
33  E.W.H.C. 1279 (Fam.).
34 Ibid., . The patient’s reasons were contained in an advance directive under the heading
“reasons for my decision” (which was held to have been made while the patient lacked capacity).
35  1 F.L.R. 445.
36 Ibid., 452.
37 Ibid., 451-452. Other arguments in favour of the termination included the fact that the baby would
almost definitely be taken away from the woman after birth; the difficulties in ensuring the health
and safety of the woman and the foetus throughout the pregnancy; and the difficulties with arranging
future care for the baby (given that both the baby’s parents suffered from serious mental illnesses, it
would be difficult to arrange an adoption). Arguments against the termination were that at this stage