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
approach which had led to the case coming to court at a very advanced stage in the
pregnancy rather than when the woman had originally requested the termination.
Nonetheless, he declined to make an order permitting the termination, holding that
the procedure was not in the woman’s best interests.
While the contemporaneous views of the person lacking capacity played little role in
judicial determinations of best interests prior to the MCA, courts were more
facilitative regarding advance expressions of preference, usually in the form of an
advance directive made while the person had legal capacity. 38 However, judicial
regard for previously expressed preferences has been tempered by other
considerations, especially if there appears to be a conflict between the patient’s
prior instructions and her current best interests. Michalowski argues that the
English courts have approached advance directives “with a bias against their
validity and applicability, unless they are clear and unambiguous, which by their
nature in most cases they cannot be”.39
The decision in HE v A Hospital NHS Trust40 highlights the challenges for the
recognition of advance directives in life-threatening situations (the situations in
which this kind of legal instrument is most likely to be utilised). Munby J. held that
there was a presumption in favour of life which meant that the burden of proof lies
with the person seeking to uphold an advance refusal of treatment in a life-
threatening situation.41 Furthermore, he held that proof of the validity of the
advance refusal and of its continuing applicability must be clear and convincing and
“[w]here, as here, life is at stake, the evidence must be scrutinised with especial
care”.42 Munby J. also held that an advance refusal of treatment will not survive a
“material change of circumstance”.43 He found that, if an argument is made that a
in a pregnancy (close to the statutory limit for termination), the termination process would be “a
drawn out, painful and traumatic procedure”; the possibility that the woman would, when her illness
became less florid, feel a heavy burden of loss and grief; and the fact that the woman, who was
acutely psychotic, would create a very difficult situation for staff and that she would be unable to
engage in counselling after the termination.
38 See Re T (adult: refusal of medical treatment)  3 W.L.R. 782, 787; Re C (adult: refusal of
medical treatment)  1 W.L.R. 290; Airedale NHS v Bland  A.C. 789, 864; St George’s
Healthcare NHS Trust v S  3 W.L.R. 936, 969; Re AK (Medical Treatment: Consent)  1
F.L.R. 129, 134; HE v A Hospital NHS Trust  2 F.L.R. 408.
39 S. Michalowski “Advance Refusals of Life-Sustaining Medical Treatment: The Relativity of the
Absolute Right” (2005) 68 M.L.R. 958, 981.
40  2 F.L.R. 408.
41 Ibid., 415.
43 Ibid., 416. Support for Munby J’s approach may be derived from Lord Goff’s statement in Bland v
Airedale NHS Trust  A.C. 789, 864 that “especial care” may be necessary to ensure that a prior
refusal still applies in the circumstances that have subsequently arisen. See also the list of issues to be
addressed in determining the applicability of an advance refusal identified by Hughes J. in Re AK
(Medical Treatment: Consent)  1 F.L.R. 129, 134.
material change of circumstances arises,44 the evidential burden falls on the person
who seeks to argue that the advance directive is no longer applicable.45 However,
once it is established that there is some reason for doubt, the burden shifts back to
the person seeking to uphold the advance directive to prove that the directive is still
operative.46 This approach to the allocation of the burden of proof makes it difficult
for advance refusals of life-sustaining treatment to be upheld in any but the most
III. THE MENTAL CAPACITY ACT: A CHANGE IN PERSPECTIVE?
The MCA represents the culmination of a lengthy reform process which had
commenced with a Law Commission Consultation Paper in 1991.47 The impetus for
the approach taken to best interests in the MCA may be traced to the work of the
Law Commission and in particular to its 1995 Report on Mental Incapacity.48
Section 1 of the MCA 2005 sets out five underlying principles, two of which relate to
decisions made for adults lacking capacity.49 The relevant principles are that any act
done or decision made for a person lacking capacity must be on the basis of her best
interests;50 and that, in decision-making or action, the option which is least
restrictive of the person’s “rights and freedom of action” must be adopted.51
A. Best Interests under the MCA
The relevant factors in determining “best interests” are set out in section 4. First,
the person making the determination52 must not do so merely on the basis of the age
or appearance of the person lacking capacity or on the basis of a condition of the
person which might lead others to make unjustified assumptions about her best
44 Munby J. also held (ibid., 419) that any statement in an advance decision which purported to make
the directive irrevocable or which required revocation to be in writing was contrary to public policy
and would not be upheld.
47 Mentally Incapacitated Adults and Decision-Making: An Overview Consultation Paper No. 119
(London: H.M.S.O., 1991). See also Mentally Incapacitated Adults and Decision-Making: A New
Jurisdiction Consultation Paper No. 128 (London: H.M.S.O., 1993); Mentally Incapacitated Adults and
Decision-Making: Medical Treatment and Research Consultation Paper No. 129 (London: H.M.S.O.,
1993); Mentally Incapacitated and Other Vulnerable Adults: Public Law Protection Consultation Paper
No. 130 (London: H.M.S.O., 1993).
48 Law Com No. 231 (London: H.M.S.O., 1995).
49 The remaining principles in section 1 are relevant to the determination of capacity.
50 Section 1(5).
51 Section 1(6).
52 Depending on the circumstances, best interests may be determined by one of a number of
persons/bodies, including the court, a medical professional, a donee of a lasting power of attorney or
a court-appointed deputy.
interests.53 Secondly, the person making the determination must consider all
relevant circumstances and, in particular, consider whether the person currently
lacking capacity is likely to regain capacity and, if so, when this is likely to occur.54
Thirdly, the person making the determination must “so far as reasonably practicable
permit and encourage the person to participate, or to improve his ability to
participate, as fully as possible in any act done for him and any decision affecting
him”.55 Fourthly, where the determination relates to life-sustaining treatment, the
decision regarding best interests must not be motivated by a desire to bring about
the death of the person lacking capacity.56 Fifthly, the person making the
determination must, “so far as is reasonably ascertainable”, consider:
(a) the person’s past and present wishes and feelings (and, in particular, any
relevant written statement made by him when he had capacity),
(b) the beliefs and values that would be likely to influence his decision if he
had capacity, and
(c) the other factors that he would be likely to consider if he were able to do
Finally, the decision-maker must take account “if it is practicable and appropriate to
consult them” of the views of “anyone named by the person as someone to be
consulted on the matter in question or on matters of that kind,”58 anyone engaged in
caring for the person or interested in the person’s welfare, any donee of a lasting
power of attorney, and any deputy appointed by the court as to what is in the
person’s best interests and what her wishes would have been.59
In order to complement the consultative aspect of the MCA, section 35 of the MCA
provides for the establishment of an Independent Mental Capacity Advocate Service.
This section provides that the “appropriate authority” must make arrangements to
enable advocates to be available to provide support to the person lacking legal
capacity so that she may “participate as fully as possible in any relevant decision”.60
The circumstances in which this service is activated include the provision of
“serious medical treatment” by the NHS.61 The appointment of the advocate arises
only where the relevant body “is satisfied that there is no person, other than one
53 Section 4(1).
54 Section 4(3).
55 Section 4(4).
56 Section 4(5).
57 Section 4(6).
58 The MCA does not specify whether a patient must be capable in order to name a person in this
regard. However, it is in line with the approach of the MCA that a person lacking capacity should be
able make such a nomination notwithstanding her incapacity.
59 Section 4(7).
60 Section 36.
61 Section 37. “Serious” medical treatment is defined in section 37(6) as “treatment which involves
providing, withholding or withdrawing treatment of a kind prescribed by regulations made by the
appropriate authority”. The advocacy service is also activated by the provision of, or a change in,
accommodation in a hospital or care home by an NHS body and the provision of, or a change in,
residential accommodation by a local authority.
engaged in providing care or treatment for [the person lacking capacity] in a
professional capacity or for remuneration, whom it would be appropriate to consult
in determining what would be in [her] best interests”.62
B. Practical Application of the Participation Requirement
The MCA itself is short on detail regarding how the participation requirement in
section 4 (4) is to be given effect. However, the practical application of the
requirement is addressed further in the Code of Practice to the MCA.63 Paragraph
5.23 of the Code identifies a positive obligation on decision-makers to “make sure
that all practical means are used to enable and encourage the person to participate
as fully as possible in the decision-making process and any action taken as a result”.
Chapter 3 of the Code outlines a series of suggestions to facilitate participation.
These include using simple language, speaking at the appropriate volume and speed,
using appropriate words and sentence structure, breaking down information into
smaller points, and using illustrations and/or photographs to help the person
understand the decision to be made. Chapter 3 also suggests asking the person
about the decision at a time and location where the person feels most relaxed and at
ease and, if necessary, using specialist interpreters or signers to communicate with
In relation to a person with specific communication or cognitive problems, the Code
suggests that decision-makers find out how the person is used to communicating,
e.g. by means of picture boards, Makaton,64 signing, technological aids, and that they
use the preferred method of communication. In this context, the Code also notes
that, for some people who are restricted to non-verbal methods of communication,
their behaviour and, in particular, changes in their behaviour may provide
indications of their feelings.
The Code’s suggestions reflect ongoing research into developing better methods of
communication with people lacking full capacity.65 These suggestions are
undoubtedly helpful in creating a climate for participation and in adding detail to
the minimal provisions in the Act. However, they do not address all of the issues to
which MCA participative model gives rise.
62 Section 37 (1)(b).
63 Department of Constitutional Affairs, 2007.
64 Makaton is a communication system based on visual representation through gestures and signs.
65 Much of this work has been in the context of people with learning disabilities: see C. Kearney and
T. McKnight “Preference, Choice, and Persons with Disabilities: A Synopsis of Assessments,
Interventions, and Future Directions” (1997) 17 Clinical Psychology Review 217; L. Cameron and J.
Murphy “Enabling Young People with a Learning Disability to Make Choices at a Time of Transition”
(2002) 30 British Journal of Learning Disabilities 105; C. Regnard et al “Understanding Distress in
People with Severe Communication Difficulties: Developing and Assessing the Disability Distress
Assessment Tool (DisDAT)” (2006) 51 Journal of Intellectual Disability Research 277; A. Young and R.
Chesson “Obtaining Views on Health Care from People with Learning Disabilities and Severe Mental
Health Problems (2006) 34 British Journal of Learning Disabilities 11.
IV. THE POLICY ARGUMENTS IN FAVOUR OF THE MCA’S
By including the patient in the determination of best interests, the legislative best
interests standard departs from the common law understanding of the standard in
important respects. In order to appreciate the significance of the MCA’s adoption of
a participative approach, it is useful to consider further the policy justifications for
this kind of approach. Four supporting arguments will be discussed. First, the MCA
approach recognises the contribution to be made by the person lacking capacity;
secondly, the MCA accords with best decision-making practice; thirdly, the MCA
accords most closely with human rights standards; and finally, the MCA provides the
most workable framework within which to preserve the important right of patient
A. Recognition of the Contribution of the Person Lacking Capacity
The MCA recognises that it is not defensible to presume that a designation of
incapacity automatically renders irrelevant the views or feelings of the person
involved. As Buchanan and Brock note, legal capacity operates “a threshold
concept, not a comparative one”.66 A person either has legal capacity or she does
not. Yet, in reality, individual capacity operates along a continuum ranging from
wholly incapable to highly capable. The fact that she is legally incapable does not
mean that a person is wholly lacking in decision-making ability. As summarised by
the Law Commission, “even where a person does not have capacity to make an
effective decision, he or she may have an important contribution to make to any
A related policy advantage of the MCA approach is that it reduces the possibilities of
conflict between the person lacking capacity and healthcare professionals. A
difficulty with decision-making on the basis of best interests is that the person
lacking capacity may actively oppose a decision made in her best interests; the fact
of her incapacity is not directly relevant to the strength of her opposition to a
particular decision. As Hale L.J. (as she then was) noted in R (Wilkinson) v
Broadmoor Special Hospital Authority68 “most people are able to appreciate that they
are being forced to do something against their will even if they are not able to make
the decision that it should or should not be done”.69 The MCA cannot prevent
conflict but the participative framework seeks to minimise such situations. The
MCA also impacts on how conflicts which do arise are to be resolved. Prior to the
MCA, where conflicts have arisen, courts have authorised the use of restraint in
66 Supra n. 8, p. 27.
67 Report on Incapacity supra n. 48, p. 46.
68  1 W.L.R. 419.
69 Ibid., 446.
order to ensure the provision of treatment. 70 Although the MCA does not prevent
the provision of treatment to an unwilling patient, the participative model, together
with the restrictions on the use of restraint contained in section 6 of the MCA,71
recognises that the fact of incapacity does not of itself justify a wholesale overriding
of patient wishes by force if necessary. It ensures that a simple delegation to the
medical profession of the decision to utilise force is no longer acceptable.
B. Accordance with Best Practice
More generally, the MCA reflects a number of aspects of best practice in terms of
approaches to decision-making. 72 It is widely accepted that the inclusion of the
subject of a decision in the decision-making process improves the quality of the
decision reached. Galligan argues that participation by the subject of the decision
provides the decision-maker with access to more and better information about the
decision which, in turn, “helps the decision-maker to have a more complete and
balanced view of the facts and the issues relating to the facts”.73
At a broader level, research suggests that participation in a decision-making process
has a positive impact on the way in which people respond to a decision reached
about them, even if the decision is in fact contrary to their stated wishes.74
Furthermore, inclusion in the decision-making process also enhances individual
well-being and self-esteem.75 In the healthcare context, research also suggests that
participation in treatment decisions may result in treatment being more effective
for the patients in question.76 For these reasons, patient participation accords most
closely with the precepts of what is sometimes described as therapeutic
jurisprudence. This approach to law is described by Winick as follows:
70 See Re MB (An Adult: Medical Treatment)  2 F.C.R. 541 discussed in text to n. 17 supra.
71 Section 6 provides that the protection from liability set out in section 5 does not apply to “an act
intended to restrain” the patient unless the person performing the act reasonably believes that it is
necessary to do the act in order to prevent harm to the person lacking capacity and the act is a
proportionate response to the likelihood of harm occurring and to the seriousness of the harm.
72 See, in the specific context of learning disabilities, K. Keywood et al Best Practice?: Healthcare
Decision-making By, With and For Adults with Learning Disabilities (Manchester: National
Development Team, 1999).
73 Due Process and Fair Procedures: A Study of Administrative Procedures (Oxford: Clarendon, 1996),
74 See the MacArthur Coercion Study (D. Dennis and J. Monahan eds Coercion and Aggressive
Community Treatment: A New Frontier in Mental Health Law (New York: Plenum Press, 1996); T.
Carney and D. Tait The Adult Guardianship Experiment (Annandale, NSW: Federation Press, 1997).
75 See B. Winick The Right to Refuse Mental Health Treatment: A Therapeutic Jurisprudence Analysis”
(1994) 17 International Journal of Law and Psychiatry 99, 100
76 See for example B. Schulman “Active Patient Orientation and Outcomes in Hypertensive
Treatment” (1979) 17 Medical Care 267; L. Fallowfield et al “Psychological Outcomes of Different
Treatment Policies in Women with Early Breast Cancer Outside a Clinical Trial” (1990) 301 British
Medical Journal 575. Although this research relates to legally capable adults, there is no reason why
the therapeutic benefit of participation, including a feeling of ownership of the treatment process,
would not apply in relation to at least some adults without legal capacity.
Therapeutic jurisprudence suggests the need for an assessment of the
therapeutic impact of legal rules. [It argues that] a sensible policy analysis of
law should take into account its consequences for the health and mental
health of the individuals and institutions it affects. Therapeutic
jurisprudence accordingly calls for theoretical speculation about and
empirical investigation of the therapeutic or antitherapeutic effects of the
While the concept of therapeutic jurisprudence requires further critical analysis, 78 it
makes sense, given the essentially therapeutic purpose of a best interests
determination, to consider the broader impact of the process on the person
involved. From this perspective, there are clear policy reasons to favour the
C. Accordance with Human Rights Standards
The participative framework accords with the rights-based approach to decision-
making for people lacking capacity required under the Human Rights Act 1998. The
human rights of patients protected under the ECHR are clearly not restricted to
those of capable patients only.79 Article 8 of the ECHR, which protects the right to
private and family life, has been held to encompass the right to “the physical and
psychological integrity” of an individual.80 Thus, the Article may be implicated by
the imposition of treatment against the wishes of a patient, notwithstanding that she
lacks legal capacity. This was confirmed by the European Court of Human Rights in
Storck v Germany.81 The Court held that Article 8 had been breached by the
administration of medication to the applicant against her will while she was
detained, also against her will, at a private clinic for people with mental disorders.
The Court “recall[ed] that even a minor interference with the physical integrity of an
individual must be regarded as an interference with the right to respect for private
life under Article 8, if it is carried out against the individual’s will”.82
In addition to fulfilling ECHR obligations, the MCA also reflects the approach taken
by the Council of Europe Recommendation on the Legal Protection of Incapable
77 “The Right to Refuse Mental Health Treatment” supra n. 75, 100. For further discussion of this
approach to law, see D. Wexler and B. Winick Essays in Therapeutic Jurisprudence (Durham NC:
Carolina Academic Press, 1991); D. Wexler and B. Winick eds Law in a Therapeutic Key: Developments
in Therapeutic Jurisprudence (Durham N.C.: Carolina Academic Press, 1996).
78 See the questions raised by C. Slogobin “Therapeutic Jurisprudence: Five Dilemmas to Ponder”
(1995) Psychology, Public Policy and Law 1933; S. Behnke and E. Saks “Therapeutic Jurisprudence:
Informed Consent as a Clinical Indication for the Chronically Suicidal Patient with Borderline
Personality Disorder” (1998) 31 Loyola of Los Angeles Law Review 945, 978-981.
79 See Herczegfalvy v Austria (1992) 15 E.H.R.R. 437; Glass v UK  E.C.H.R. 102 Application No.
80 X and Y v Netherlands (1986) 8 E.H.R.R. 235, para. 22.
81  E.C.H.R. 406.
82 Ibid., para. 143.
Adults.83 Principle 9 of the Recommendation requires that the past and present
views of the incapable person must be considered in “establishing or implementing
a measure of protection” for this person.84 This Principle also requires that the views
of the incapable adult as to the choice of any person to represent her should be
taken into account and, as far as possible, given due respect85 and that the person
representing the legally capable adult should give her adequate information,
“wherever this is possible and appropriate”, so as to enable her to express a view.86
D. Respect for Patient Autonomy Post-Incapacity
Finally, the MCA’s recognition of past preferences, and of the beliefs and values that
would be likely to influence the decision if the patient had had capacity, allows a
continued role for patient autonomy notwithstanding the patient’s present
incapacity. Since the 1960s, the principle of patient autonomy has provided the
primary basis for both healthcare ethics and law.87 The “absolute” right of the
legally capable patient “to choose whether to consent to medical treatment, to
refuse it or to choose one rather than another of the treatments being offered”88 has
been recognised as a fundamental legal principle. Indeed, such has been the degree
of elevation of the autonomy principle that, in the United States, courts have sought
to maintain patients’ autonomy notwithstanding their current incapacity through
the use of the substituted judgment standard for decision-making. 89
Under the substituted judgment standard, decisions are made by surrogate
decision-makers on the basis of what the person would have wanted had they been
capable. This leaves surrogates with the difficult task of determining what the
person’s decision would have been. It is perhaps unsurprising therefore that, as
Harmon shows, judicial applications of the standard quickly reached the point
where judges reached decisions which they considered appropriate without any
real justification based on what the incapable person would have wanted.90
Whether this remains the case is unclear. Since the mid-1990s, surrogate decision-
83 Recommendation No R (99) 4 of the Committee of Members to Member States on Principles
Concerning the Legal Protection of Incapable Adults (adopted February 23 1999).
84 Principle 9 (1).
85 Principle 9 (2).
86 Principle 9 (3).
87 See C. Schneider The Practice of Autonomy (New York: Oxford University Press, 1998); O. O’Neill
Autonomy and Trust in Bioethics (Cambridge: Cambridge University Press, 2002).
88 Re T (Adult: Refusal of Medical Treatment)  3 W.L.R. 782, 786 per Lord Donaldson M.R.
89 Although associated with US law, the substituted judgment standard in fact originates from English
decisions relating to the use of funds in the estates of previously capable individuals (see Ex Parte
Whitbread (1816) 35 Eng. Rep. 878, 879) and was transplanted into United States healthcare law,
beginning with the decision in Strunk v Strunk (1969) 445 S.W. 2d. 145. The standard was widely
adopted across the United States following the decision in Re Quinlan (1976) 70 N.J. 10.
90 “Falling Off the Vine: Legal Fictions and the Doctrine of Substituted Judgment” (1990) 100 Yale Law
making has become essentially a private family matter,91 other than in exceptional
circumstances. 92 Under the law, however, decisions continue to be made on the
basis of what the person would have wanted, with the question of best interests
considered only as a last resort where the surrogate cannot decide what the
person’s preference would have been.93 However, there is no mechanism to record
the factors that actually motivate surrogates in reaching decisions and little in the
way of review of decisions actually made.
As noted by the Law Commission,94 a formulation of best interests which recognises
past preferences contains “a strong element” of the substituted judgment standard.95
However, the approach under the MCA differs crucially from substituted judgment
because the MCA retains the focus on best interests. By providing a space for past
preferences, it seeks to give effect to the individual’s “right to a life structured by his
own values”.96 However, because it maintains the centrality of best interests, the
MCA does not create the same degree of pressure to invent patient preferences as
that encountered in the US application of the substituted judgment standard. In this
regard, the approach of the MCA may be seen as representing a more appropriate
and workable response to the goal of preserving patient autonomy notwithstanding
the patient’s loss of capacity.
Notwithstanding the strong policy justifications for the participative aspects of the
MCA, the approach taken in the MCA raises important practical and conceptual
questions. These questions must be confronted if the participative aspect of the
91 This followed the widespread adoption at state level of the Uniform Health-Care Decisions Act
1994 which shifted the decision-making function away from the courts and instead placed it with
designated surrogates, usually family members of the person lacking capacity. The Uniform Health-
Care Decisions Act 1994 provides for advance directives, enduring powers of attorney and, as a final
resort, surrogate decision-making. However, as L. Francis “Decision Making at the End of Life:
Patients with Alzheimer’s or Other Dementias” (2001) Georgia Law Review 539, 561 notes, the
majority of people do not avail themselves of the first two options and, accordingly, the surrogate
facility is most frequently relied upon.
92 One such exceptional circumstance arose in Schindler v Schiavo (2003) 851 So. 2d. 182 (Fla. Dist.
Ct. App.) which made its way to the United States Supreme Court following the introduction of
emergency legislation in the State of Florida (H.B. 35E. Authority for the Governor to Issue a One-Day
Stay to Prevent the Withholding of Hydration and Nutrition from a Patient). See further R. Dresser
“Schiavo: A Hard Case Makes Questionable Law” (2004) 34 Hastings Center Report 8.
93 Section 5 (f) of the Uniform Health-Care Decisions Act 1994 states that a surrogate “shall make a
health-care decision in accordance with the patient’s individual instructions, to the extent known to
the surrogate. Otherwise, the surrogate shall make the decision in accordance with the surrogate’s
determination of the patient’s best interest and in good faith”.
94 Report on Incapacity supra n. 24, para. 3.25.
95 Although the substituted judgment standard was rejected by the House of Lords in Airedale NHS
Trust v Bland  A.C. 789, 872 per Lord Goff; 895 per Lord Mustill, some English courts have
incorporated aspects of the standard by asking what the patient would have wanted as part of their
assessment of best interests (see the approach of the Court of Appeal in Bland ibid.; Re J (a Minor)
(Wardship: Medical Treatment)  Fam. 33, 55; Portsmouth NHS Trust v Wyatt and Anor 
E.W.H.C. 2247 (Fam.), ).
96 R. Dworkin Life’s Dominion: An Argument About Abortion, Euthanasia, and Individual Freedom (New
York: Alfred A Knopf, 1993), p. 224.
MCA is to be delivered in a meaningful way. In addressing the relevant issues, it is
useful to consider separately the questions which arise from the requirement in
section 4(4) that the person lacking capacity must be permitted and encouraged to
participate in the decision-making process and those which arise from the
requirement in section 4(6) that account must be taken of the past wishes and
feelings of the person lacking capacity and of the beliefs and values that would be
likely to influence the decision if the person had had capacity.
V. ISSUES ARISING FROM PATIENT PARTICIPATION IN THE DECISION-
Any attempt to develop a meaningful framework for patient participation must
recognise the difficulties that may arise in interpreting the views and feelings of the
person lacking capacity. While many people lacking capacity can unambiguously
communicate their views, in some cases there may be elements of uncertainty and
ambiguity or the need for an interpretation of words or signals may arise. The issues
become more acute where observers have to rely on behavioural signals. Dresser
notes the inherent difficulties in understanding the perspective of someone who
may “often respond to the world in ways that mystify and perplex the ‘normal’
persons observing them”.97 Even something as apparently straightforward as
ascertaining that a person is distressed or in pain can be difficult, if the person does
not have words to share the experience.98
Researchers into communication with people with profound learning disabilities
have identified a number of difficulties in interpreting responses, which are also
likely to arise in relation to people who lack capacity for other reasons.99 First, the
person lacking capacity may have idiosyncratic responses that have a specific
meaning and may only be ascertained after repeated efforts. Secondly, the person
trying to interpret the response may lack the skills, patience or time to establish
effective communication; she may assume that she knows the answer already and
may interpret the responses accordingly or she may have decided on the most
appropriate course of action and may communicate this, either verbally or non-
verbally, to the person lacking capacity, leaving the person little option but to
acquiesce in a pre-ordained plan.100
97 R. Dresser “Missing Persons: Legal Perceptions of Incompetent Patients” (1994) 46 Rutgers Law
Review 609, 666-667.
98 See the work of Regnard et al supra n. 65 in developing ways to understand distress signals in
people with severe communication difficulties.
99 See J. Porter et al “Interpreting the Communication of People with Profound and Multiple Learning
Difficulties” (2001) 29 British Journal of Learning Disabilities 12; J. Ware “Ascertaining the Views of
People with Profound and Multiple Learning Disabilities” (2004) 32 British Journal of Learning
100 Some commentators have argued that the risk of acquiescence is heightened in the context of
people with learning disabilities: see C. Sigelman et al “When in Doubt, Say Yes: Acquiescence in
Interviews with Mentally Retarded Persons” (1981) 19 Mental Retardation 53; L. Heal and C.
It is in order to combat some of these difficulties that section 4(7) of the MCA
obliges the decision-maker to consult with other people before making a decision
regarding best interests. As noted previously, the categories of possible consultees
include: a person named by the incapable adult, a carer, a donee of a power of
attorney, a court-appointed deputy and an independent advocate.101 While some of
these categories are mutually exclusive (for example an independent advocate is
appointed only where there is no one else to act102), some are co-extensive. The
Code to the MCA notes that these people may be able to help the incapable person to
express wishes or aspirations or indicate a preference between different options.103
The requirement to consult with a range of relevant people recognises that different
people may have quite different approaches to, and understandings of, the person
lacking capacity. A carer who is a family member may have a nuanced and complex
understanding of the person which a professional may lack. On the other hand, a
family carer may have a degree of emotional involvement in the situation which
makes it difficult to make the kind of objective assessment of the incapable person’s
own wishes which is envisaged by the MCA. Because the people consulted
inevitably have different perspectives, conflicts may arise among them as to the
wishes of the person lacking capacity.104 The Code offers little helpful in terms of
suggesting how a divergence in opinion should be resolved, noting simply that, no
matter who makes the decision, they should try to “work out” what is in the best
interests of the person lacking capacity.105
A. Risks to the Delivery of Patient Participation
In light of the difficulties identified above, two risks arise which could limit the
meaningful application of the MCA requirement for participation. The first is that
the requirement for patient participation might end up as delivering little more than
an acknowledgement of the incapable person’s views before making the decision
regarding best interests that would have been made in any case. Thus, the approach
to assessment of best interests after the MCA might turn out to be little different to
the pre-MCA approach discussed above.106 Although, as argued above, there are
therapeutic benefits to any degree of engagement, this kind of tokenistic approach
to participation would fail to deliver on the potential of the MCA.
Sigelman “Response Biases in Interviews of Individuals with Limited Mental Ability” (1995) 39
Journal of Intellectual Disability Research 331.
101 See text to n. 59 supra.
102 See text to n. 62 supra.
103 Supra n. 63, para. 5.24.
104 This is usefully exhibited in a case study described by Porter et al supra n. 99, 16. Peter, a young
man with profound learning disabilities, tapped at a helium balloon when it came near him. The staff
at his school believed him to be playing with the balloon, his family believed that he was trying to
push the balloon away and the researchers for the case study noted that Peter had difficulty
controlling his arm movements.
105 Supra n. 63, para. 5.12.
106 See text following n. 31 supra.
The second risk is that decision-makers will invent or interpret patient wishes in a
way which accords with the decision-maker’s own views. Dresser argues that, when
confronted with patients with high degrees of disability who proffer ambiguous
signals, courts (and others) construct “a mythical, generalized competent person to
inhabit the body that lies before them”.107 When interpreting signals from a person
whose views and feelings are essentially alien to them, decision-makers may fall
back on what they believe to be a “normal” response to the situation. In so doing,
the wishes identified may not be those of the person lacking capacity but those
which the decision-maker believes she would have if she were in the patient’s
Annas’ analysis of the decision of the Massachusetts Appeals Court in Re Hier108
illustrates how decision-makers can make unjustified assumptions about the wishes
of the person before them.109 Mary Hier was a 92 year-old woman who had been
severely mentally ill for much of her life and had lived in an institution for the
previous 57 years. She was fed by a feeding tube into her stomach which had
become dislodged. When attempts were made to reinsert the tube, she physically
resisted, including placing her hands over her stomach to prevent the reinsertion.
In the view of the Court, the patient’s apparent rejection of the feeding tube was a
“plea for privacy and personal dignity by a ninety-two year old person … for whom
life has little left to offer”.110 Annas contradicts this conclusion, showing that the
patient’s actions were ambiguous and that her resistance to the feeding tube
indicated nothing about her personal preferences regarding her life or death.
However, as he points out, if one wishes one can “construct a whole scenario about
Mrs Hier’s preference”.111 In Annas’ words, “[t]his is fiction but it reads well”.112
While the Hier case arose in the United States, in a legal context where the pressure
to construct patient preferences is much greater than arises under the MCA,113 the
risk Annas exposes could arise with any model involving participation by patients
B. Meeting the Challenge of Delivering Patient Participation
The inclusion of the wishes and feelings of the person lacking legal capacity
provides a challenge for a legal system which, to date, has taken an “all or nothing”
approach in dealing with preferences. Where the person has legal capacity, respect
for patient autonomy has meant that her preferences are the only relevant factor,
107 Supra n. 97, 612.
108 (1984) 464 N.E. 2d. 959.
109 G. Annas “The Case of Mary Hier: When Substituted Judgment Becomes Sleight of Hand” (1984)
Hastings Center Report 23. See similar arguments made in the context of the earlier decision In re
Spring (1979) 399 N.E. 2d. 493 in “Quality of Life in the Courts: Earle Spring in Fantasyland” (1980)
Hastings Center Report 9.
110 Supra n. 108, 965.
111 Supra n. 109, 25.
113 See text following n. 95 supra.
trumping all other concerns including objective assessments of her best interests.114
However, where the patient is legally incapable, as noted above, to date, her
preferences have played little or no role in the objective assessment of her interests.
Participative decision-making requires decision-makers to adopt a new mindset. It
requires open engagement with patient preferences but without falling into the trap
of constructing preferences which accord with the decision-maker’s views.
At a practical level, the participation requirement should, at a minimum, necessitate
the acknowledgement, if this is the case, that the person lacking capacity has an
alternative preference. This in turn should lead to a rigorous scrutiny of the
evidence presented in favour of the argument that the decision-maker should act
against this preference. It cannot be enough for a decision-maker simply to
acknowledge the views of the person lacking capacity before reaching a decision
which takes no account of these views. Certain factors should alert decision-
makers to the need to be especially careful before overriding the preference of the
patient lacking capacity. First, where, as was the case in Re SS (Medical Treatment:
Late Termination),115 the evidence is “finely balanced,” there should be a strong
presumption in favour of upholding the patient’s preference.116 Secondly, where the
patient’s capacity falls towards the higher end of the capacity continuum, her views
should be accorded greater weight. Thirdly, decision-makers must be alert to the
degree of unwillingness shown by the person lacking capacity and, in particular, to
the matter of whether restraint will be required in order to provide the treatment.117
In a broader sense, the MCA should be seen to require decision-makers to strive,
imaginatively if necessary, to recognise the preferences of a patient lacking capacity
and to ensure that the patient’s views are not lost in the midst of the professional
VI. THE INCLUSION OF PAST WISHES, BELIEFS AND VALUES
Section 4 (6) of the MCA requires decision-makers to take account of the legally
incapable person’s past wishes and feelings and identifies, in particular, “any
relevant written statement made by [the person] when he had capacity”. Along
similar lines, the Act also requires account to be taken of “the beliefs and values that
would be likely to influence [the person’s] decision if he had capacity”. The
decision-maker is obliged to consult with the categories of people outlined in
114 See, for example, the comments of Lord Donaldson M.R. noted in Re T (Adult: Refusal of Medical
Treatment)  3 W.L.R. 782, 786.
115  1 F.L.R. 445.
116 Cases with this degree of uncertainty are likely to be relatively rare. The applicant’s responsible
medical officer in Re SS noted (ibid., 452) the unusual nature of this case, because the evidence
“usually points clearly one way or the other and the correct course is taken”.
117 See the approach advocated by Sir Mark Potter P. in Trust A and Trust B v H (An Adult Patient)
 E.W.H.C. 1230 (Fam.). While accepting that restraint was lawful, the President noted, 
that the extent to which restraint may be needed “has to be carefully considered when assessing the
balance of benefit and disadvantage in the giving of the proposed medical treatment and where the
best interests of the patient truly lies”.
section 4(7) regarding these wishes, feelings, beliefs and values.118 This aspect of the
MCA gives rise to a number of issues. In particular, questions arise regarding the
relationship between section 4 (6) and other aspects of the MCA, the interplay
between underlying values and the problem of ascertaining a patient’s past wishes.
A. Relating Section 4 (6) to Other Aspects of the MCA
The requirement to take account of the person’s past wishes in section 4 (6) must be
considered alongside other provisions in the MCA, in particular the advance
decision-making provisions contained in sections 24-25 and the requirement in
section 4 (5) that, where the decision relates to life-sustaining treatment, the
decision-maker must not be motivated by a desire to bring about the death of the
person lacking capacity.
Section 24 of the MCA allows a capable person over the age of 18 to make an advance
decision to refuse specified treatment(s) in specified circumstances to apply if she
subsequently loses capacity. Clearly, the requirement in section 4 has a much
broader ambit than section 24, which covers only the refusal of medical treatment.
However, in relation to treatment refusal, the two sections cover the same territory
and, if the necessary requirements for the application of section 24 are not met,
section 4 (6) should operate as a fall-back position. The question of whether an
advance refusal comes within section 24 or section 4 will depend on the approach
taken by the courts to the conditions in the MCA which determine when an advance
decision will be upheld.
On its face, section 24 does not appear overly demanding; it states that the advance
decision may be expressed in “layman’s terms” and it does not impose a
requirement that the refusal be in writing (unless it relates to life-sustaining
treatment).119 However, it could be difficult to produce sufficient evidence of the
existence of the advance decision in the absence of writing.120 Beyond this, the ambit of
section 24 will be determined by the approach taken to the factors relevant to satisfy
the statutory requirement in section 25 that an advance decision must be “valid” and
“applicable to the treatment”.121
Judicial responses to two aspects in particular of section 25 will be crucial in
determining the ambit of section 24. First, the MCA provides that an advance
decision is not “valid” if the person “has done anything else clearly inconsistent with
118 See the list set out in text to n. 59 supra.
119 An advance refusal does not apply to “life-sustaining treatment” unless verified by a written
statement to the effect that it is to apply even if life is at risk (section 25(5)).
120 See the approach taken by Munby J. in HE v A Hospital NHS Trust  2 F.L.R. 408, 417.
Although Munby J.’s comments precede the MCA, there is nothing in the MCA to require a departure
from this approach.
121 Section 25(1).
the advance decision remaining his fixed decision”.122 The provision does not require
that the person who does the “clearly inconsistent” action have legal capacity.
Clearly, the question of what constitutes a “clearly inconsistent” action will require
judicial elaboration. However, a situation such as arose in HE v A Hospital NHS
Trust123 may well fall within the provision. Here, evidence was introduced that the
patient, who had made an advance refusal of blood products because she was a
Jehovah’s Witness, had ceased to practice this religion and had agreed to convert to
Islam on her forthcoming marriage.
Secondly, the MCA states that an advance decision is not “applicable” if there are
“reasonable grounds” for believing that circumstances exist which the person did
not anticipate at the time of making the advance decision and which would have
affected the decision had she anticipated them.124 This provision seeks to deal with a
commonly- invoked criticism of advance decision-making to the effect that
fundamental information (for example, information as to the kind of treatments
available for the condition in question) may be absent at the time that the patient
makes the advance decision and therefore the advance decision is not an “informed”
decision.125 Judicial views on what constitute “reasonable grounds” will determine
the extent to which advance decision-making is effective. For example, if a patient
who made an advance decision to refuse treatment is apparently contented in her
current (incapable) state, does this constitute a reasonable ground for believing that
circumstances exist which she did not anticipate when making the advance decision
and which would have affected her decision had she done so?
Depending on the way in which these aspects of section 25 are applied, the ambit of
section 24 may well be circumscribed and many indications of preference may be
found to fall within the (non-determinative) ambit of section 4 (6) rather than under
section 24.126 If this becomes the case, decision-makers are still obliged to take
account of the patient’s past wishes – which are clearly set out in the advance
decision. However, if the advance decision has not been upheld under section 24, it
is unlikely that the much more nebulous requirement under section 4 (6) will have
any real impact on the decision-making process.
In considering the operation of section 4 (6) in a treatment refusal context, the issue
of section 4(5) also arises. As noted previously, this provision requires that, where
122 Section 25(2)(c). The other circumstances in which a decision is not valid are if the person has
withdrawn it when she had capacity to do so or if a later lasting power of attorney conferred
authority on a donee to consent to or refuse the designated treatment.
123  2 F.L.R. 408.
124 Section 25(4)(c). The other circumstances in which a decision is not applicable are if the person
has capacity at the time the question of treatment refusal arises, if the treatment in question is not
specified in the advance decision, or if any circumstances specified in the advance decision are
125 See Dresser “Missing Persons” supra n. 97, 624-630; Buchanan and Brock supra n. 8, pp. 101-108.
126 The normative context for these aspects of section 25 is discussed further in text following n. 128
the determination of best interests relates to life-sustaining treatment, the decision
must not be motivated by a desire to bring about the death of the person lacking
capacity. This is a rather odd provision which seeks to limit permissible motives for
decision-makers but does not limit what decision-makers may actually decide
(provided their motives do not violate the section).127 This raises the question of
whether a decision-maker may take account of a person’s past wishes and views if
these indicate a clear desire to be allowed to die in the particular circumstances at
issue. In such circumstances, it may be argued that the decision-maker’s motivation
is not the desire to bring about the death of the person lacking capacity but to fulfil
that person’s wishes. Therefore, section 4 (5) should not prevent the inclusion of a
person’s past wishes (that they be allowed to die) as part of the determination of
best interests under section 4 (6).
B. Past Wishes: The Normative Question
Moving on from questions regarding the internal consistency of the MCA, issues of
consistency also arise in terms of the wishes of the person lacking legal capacity. As
the body of literature on advance directives shows, a person’s wishes and feelings
may not remain the same following her incapacity.128 Someone who, while capable,
may express a strong preference that she would not wish to live with profound
disabilities may appear contented in a state which would hitherto have seemed
unbearable to her.129 In less dramatic circumstances, a person while capable may
have had clear preferences regarding her life-style or family matters but these might
change following a loss of capacity. Thus, the devoted wife may forget her husband
and develop other relationships, something which would have been unimaginable to
her pre-incapacity self.130
A great deal has been written regarding the degree of moral authority which a
person’s past views should hold after that person has lost capacity. On the one
127 J. Coggon “Ignoring the Moral and Intellectual Shape of the Law After Bland: the Unintended Side-
effect of a Sorry Compromise” (2007) 27 Legal Studies 110, 125 describes the section as a “sorry
compromise” with sanctity of life doctrine.
128 See in particular R. Dresser “Life, Death, and Incompetent Patients: Conceptual Infirmities and
Hidden Values in the Law” (1986) 28 Arizona Law Review 373; “Missing Persons” supra n. 97;
“Dworkin on Dementia: Elegant Theory, Questionable Policy”  Hastings Center Report 32.
129 See the facts of In re Martin (1995) 538 N.W. 2d. 399. The patient was legally incapable and
significantly disabled following a car accident. He was fed by a feeding tube but otherwise did not
require medical treatment. His wife brought a petition to have feeding stopped on the basis that,
while capable, the patient had expressed a desire not to have his life sustained in these
circumstances. Other members of the patient’s family contended that, even if he had had these views
prior to his accident, he had now changed his attitude and was contented and co-operative with his
carers. See further T. Marzen and D. Avila “Will the Real Michael Martin Please Speak Up! Medical
Decisionmaking for Questionably Competent People” (1995) 72 University of Detroit Mercy Law
130 The issues are evoked in Alice Munro’s short story “The Bear Came Over the Mountain” in
Hateship, Friendship, Courtship, Loveship, Marriage (Vintage, 2001) (filmed as Away From Her, dir.
Sarah Polley, 2006).
hand, liberal theorists, such as Dworkin,131 argue that that an individual’s past
(capable) preferences must be respected even if these conflict with the individual’s
current best interests or her current (incapable) wishes or desires. Thus, Dworkin’s
approach to decision-making for people lacking capacity is based on respect for the
individual’s prior (or precedent) autonomy. Justifying this approach in the case of
patients with dementia, Dworkin argues that “the fate of a demented person can
affect the character of his …whole life, not just its sad final stages”.132 In developing
this argument, Dworkin contrasts two kinds of interests that people have in their
lives. Experiential interests are concerned with quality of life issues, such as
pleasure, contentment or lack of pain. Critical interests are concerned with making
value judgements and reaching autonomous decisions on this basis.133 From
Dworkin’s liberal perspective, the latter interests are more fundamental and
therefore the capable individual’s critical evaluation of her own life and how she
wishes to live it must be prioritised ahead of her experiential interests after she
Commentators who reject Dworkin’s position dispute the longitudinal view of life
which he takes.134 Dresser provides one of the leading critiques in this regard.135 She
argues that past preferences should not take precedence over current preferences
or interests because, in simple terms, people change over the course of their lives.
In Dresser’s words, “[p]eople experiencing various life events, including set-backs in
their physical and mental functioning may revise their goals, values and definitions
of personal wellbeing”.136 Therefore, legally incapable people should not be
governed by the preferences of their previous capable selves. Dresser derives
support for this view from Parfit’s argument that there is no essential human
identity but that identity is based on the fact of psychological continuity which in
turn is dependent on various factors, including the retention of memories.137 If
psychological continuity is broken through a loss of memory, the person becomes a
different person to the one she was before this loss took place. On this basis, her
prior wishes have no more moral authority than those of a stranger.
However, as Buchanan and Brock argue, even if psychological continuity is a
necessary condition for human identity, the relevant issue relates to how much
psychological continuity is required so as to maintain identity. 138 Buchanan and
Brock argue that incapacity per se does not invalidate an advance decision but that
an advance decision loses moral authority as the level of psychological continuity
131 Life’s Dominion supra note 96. See also N. Rhoden “Litigating Life and Death” (1988) 102 Harv
Law Rev 375; N. Cantor “Prospective Autonomy: On the Limits of Shaping One’s Postcompetence
Medical Fate (1992) 13 Journal of Contemporary Health Law and Policy 13.
132 Ibid., p. 230.
133 Ibid., pp. 201-202.
134 See text to n. 125 supra.
135 See work cited in n. 128 supra, and in particular “Life, Death and Incompetent Patients”.
136 “Life, Death and Incompetent Patients” supra n. 128, 379.
137 See Reasons and Persons (Oxford: Clarendon, 1984), p. 216 et seq.
138 Supra n. 8, pp. 152 – 189. See also Rhoden supra n. 131.
between the prior capable patient and the current incapable one becomes less.
They contend that, even when the diminution of psychological continuity is
sufficient to suggest that the incapable person is not the same as the former capable
person, there may still be enough continuity to allow her prior wishes at least some
weight in reaching a decision.139
Even if one accepts as a normative proposition that prior capable wishes should
govern treatment decisions for people lacking capacity, this is persuasive only if the
prior wishes of the individual now lacking capacity can be ascertained. Dworkin’s
arguments relate primarily to clearly indicated preferences through a formal
advance directive.140 He does not address in any detail the question of how
preferences that are not clearly indicated should be dealt with.141 In the absence of a
clear indication of preference, it is much more difficult to ground an argument in the
right of autonomy and the endeavour risks becoming simply a “judicial artifice [that]
can render the exercise of state power invisible”.142 For this reason, this issue of
ascertaining the patient’s past views, considered below, has both a practical and a
C. Ascertaining Past Wishes
As noted above, the MCA lists a range of people to be consulted in trying to ascertain
the past wishes and the relevant beliefs and views of the person lacking capacity.143
While the consultative model is a good one, it is important to remember that even
close friends or family members cannot always know the past preferences or the
relevant beliefs and values of the person lacking capacity. Even if it is presumed
that consultees will always act in good faith, studies show that many surrogates
cannot accurately predict what patients would have chosen. 144 Difficulties in this
regard may be accentuated by the fact that many people do not discuss their
preferences with family members. Wicclair notes that many elderly people (who are
likely to be highly represented within the category of adults lacking legal capacity)
do not discuss their preferences and that, when elderly people do talk to their
families about future care, comments may be vague, off-hand, and ambiguous.145
Statements such as “I would rather die than be dependent” may reflect a desire for
139 Ibid.¸ pp. 182-183.
140 Supra n. 96, p 226.
141 See ibid, pp 232-233 for Dworkin’s inconclusive description of a situation involving an individual
without a clear advance directive.
142 Harmon supra n. 90, 71.
143 For full list, see text to n. 59 supra.
144 See study reported by D. Sulmasy et al “The Accuracy of Substituted Judgments in Patients with
Terminal Diagnosis” (1998) 128 Annals of Internal Medicine 621 which matched the actual treatment
preferences of (capable) patients who had a predicted two-year survival rate of less than 50% with
their family members’ views of their likely preferences. Approximately one-third of family members
made inaccurate predictions regarding preferences. See also studies cited in D. Wicclair Ethics and
the Elderly (New York: Oxford University Press, 1993), p. 56; Francis supra n. 91, 569-570.
145 Ethics and the Elderly ibid., p. 55-56.
reassurance, or may be a result of temporary depression or fear, and may not
represent the person’s considered views on future care should they lose capacity.
Wicclair also notes that family members may disagree regarding preferences and
that conflicts of interest between family members may influence interpretations of
the incapable patient’s former views.146
D. The Challenges for the Recognition of Past Wishes
Unlike the substituted judgment standard which it, to a degree, emulates, section 4
(6) of the MCA does not indicate how conflicts between past and present
preferences or between past preferences and current interests are to be dealt
with.147 However, elsewhere in the MCA, there are indications of a normative
preference for present interests over past preferences. As discussed above, the
requirements set out in section 25 relating to the validity and applicability of an
advance decision limit the circumstances in which an advance decision will be
upheld. 148 If this is the case where there is a specific legislative endorsement of
advance decision-making, it may reasonably be expected that there will be an even
stronger endorsement of the present preferences and/or interests of the person
lacking capacity over past wishes in the context of section 4(6). For the reasons
discussed above, there are good reasons for decision-makers to favour a patient’s
present preferences/interests over past wishes, especially if there is not a clear
indication of what these past wishes are.
This does not mean, however, that this aspect of section 4 (6) is meaningless. The
MCA has an ambit beyond situations of conflict. In most situations, there will not be
a direct conflict between a patient’s past wishes and her current preferences or
interests. In these situations, section 4 (6) requires decision-makers to take account
of the past wishes of the person lacking capacity and to create a space within which
a person’s past wishes can still influence decisions notwithstanding the person’s
Best interests is inherently an elusive and, in some ways, unsatisfactory concept. As
traditionally understood at common law, the standard was based on the premise of
an objective assessment of the interests of the person lacking capacity. It assumed
an omniscient decision-maker operating against a backdrop of undisputed (albeit
unspoken) values against which the best interests of the person lacking capacity
could be measured. There were fundamental difficulties with this assumption. The
decision-maker is not omniscient but rather she inevitably lacks a fundamental
piece of knowledge, i.e. what it feels like to be the person for whom the decision is
146 Ibid., p. 56.
147 As noted in text to n. 93 supra, the substituted judgment standard as operated in the United States
clearly accords theoretical precedence to past preferences over current interests.
148 See text following n. 122 supra.
being made. The MCA concedes the fallibility of decision-makers and, by including
the person lacking capacity in the decision-making process, it approaches the
decision-making task with a degree of “epistemological humility”.149 For the reasons
set out earlier, this is a worthy approach.
However, because the MCA keeps faith with best interests standard, there will be
difficulties in giving effect to the participative framework set out in section 4. The
MCA adds a new factor to the best interests “balance sheet.” This factor is the
preference (past and present) of the person involved and the beliefs and values
which would be likely to influence the person if she had capacity. In so doing, the
MCA introduces a subjective element into the best interests standard, thereby
fundamentally challenging the objective nature of the standard. This creates a
conceptual dilemma in cases where there is a conflict either between the current
preferences of the person lacking capacity and her (objectively assessed) best
interests or between her past wishes and her current preferences and/or interests.
This article has argued that, where there is a conflict between the subjective
preferences of the person lacking capacity and the objective best interests standard,
the MCA requires that efforts be made to find a solution that recognises the
preference of the person to whom the decision relates. The imperative in this
regard increases where the evidence regarding best interest is “finely balanced,”
where the person’s capacity falls towards the upper end of the (in)capacity
continuum, and where the person actively resists the proposed treatment. It has
also been argued that, where there is a conflict between a person’s past wishes and
her current preferences and/or interests, current preferences and/or interests
should prevail. However, this does not mean that the MCA’s requirement to allow a
role for prior autonomy can be disregarded.
Ultimately, the MCA represents an inevitable compromise between objective and
subjective approaches to decision-making for people lacking capacity. There are
good reasons why this is an appropriate approach to decision-making in this
context. However, it does require decision-makers to negotiate new ways of
working with the best interests standard to ensure that the participative framework
contained in the MCA is allowed to operate in a meaningful way and that it does not
become simply a rhetorical nicety.
149 K. Atkins “Autonomy and the Subjective Character of Experience” (2000) 17 Journal of Applied
Philosophy 71, 75.