From ‘Doctor Knows Best’ to Dignity: Placing Adults Who Lack Capacity at the Centre of Decisions About Their Medical Treatment
| Date | 01 March 2018 |
| DOI | http://doi.org/10.1111/1468-2230.12328 |
| Published date | 01 March 2018 |
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From ‘Doctor Knows Best’ to Dignity: Placing Adults
Who Lack Capacity at the Centre of Decisions About
Their Medical Treatment
Emily Jackson∗
In 1989, the House of Lords first derived a ‘best interests’ test for the medical treatment of
adults who lack capacity from the doctrine of necessity and, now codified, the test continues
to apply today. The Mental Capacity Act 2005 sets out a non-exhaustive checklist of relevant
considerations, but it gives no particular priority to the patient’s wishes. There is also no formal
expectation that the patient will participate directly in any court proceedings in which her
best interests are to be determined. This article will consider the advantages and disadvantages
of providing additional guidance to decision-makers in order to help them navigate both
taking seriously the wishes of people who lack capacity and, at the same time, not abandoning
patients who need help and support. More specifically,this ar ticle advocatesfor malising current
best practice in the Court of Protection through the introduction of a series of rebuttable
presumptions, or starting points.
INTRODUCTION
My purpose in this article is to look backwards, over nearly 30 years of case
law and legislative reform since the judiciary first derived a ‘best interests’ test
for the medical treatment of adults who lack capacity from the doctrine of
necessity, and forwards, in order to advocate an even more patient-centred
approach. I will acknowledge that there has been a sea-change in the way in
which decisions are taken for people who lack capacity, from the ‘doctor knows
best’ paternalism of Re F (Mental Patient: Sterilisation),1to the recent humane
and empathetic judgments in the Court of Protection. The Mental Capacity
Act 2005 was a staging post on this drive towards respect for the patient’s point
of view, but the judiciary, to its credit, has taken this further still. It could
be argued that the Court of Protection is now working with a presumption
that the patient’s wishes should be accorded some level of primacy which goes
beyond the wording on the face of the statute, and which is, importantly, out of
step with how the best interests test is interpreted ‘on the ground’. In the light
of this, and the UN Convention on the Rights of Persons with Disabilities,2I
∗Law Department, London School of Economics. I am very grateful to Jonathan Herring, Carolyn
Hilder, David Lock and Genevra Richardson for reading and commenting on earlier drafts of
this paper, and to the MLR’s anonymous referees for their helpful criticisms and suggestions for
improvement.
2 The UK ratified the Convention in 2009. The UK is also a signatory to an Optional Protocol,
which means that individuals are able to make complaints directly to the UN Committee on
the Rights of Persons with Disabilities.
C2018 The Author.The Moder n Law Review C2018 The Modern Law Review Limited. (2018) 81(2) MLR 247–281
Published by John Wiley& Sons Ltd, 9600 Garsington Road, Oxford OX4 2DQ, UK and 350 Main Street, Malden, MA 02148, USA
From ‘Doctor Knows Best’ to Dignity
will advocate a slightly more structured working model, which places the adult
who lacks capacity unequivocally at the heart of decisions about her medical
treatment.
SOFTENING THE CAPACITY ‘CLIFF-EDGE’
The central problem is that the law inevitably draws a bright line between
those who do, and those who not have the mental capacity to make decisions.3
If there is to be legislation (or a common law regime) to protect the interests
of those who cannot take decisions for themselves, there has to be a test for
incapacity, and it is in the nature of such a test that some patients will pass
it, while others will fail. The reality of the psychological ability to exercise
choice is not binary, however.4In addition to the rather obvious fact that a
person’s capacity will fluctuate over the course of her lifetime, the ability to
make decisions, with or without others’ help, exists on a spectrum.5At one
end, there might be someone in a permanent vegetative state, who cannot
express a view, while at the other end, someone may appear to be able to
take decisions without others’ support. Even this is misleading, however: the
apparently autonomous individual will still need some help in order to reach
a decision, such as the provision of information in a language which she can
understand.6
At the moment, the test for capacity under the Mental Capacity Act 2005
operates as a cliff edge.7Patients with capacity have an almost absolute right to
refuse medical treatment ‘for rational or irrational reasons or for no reason at
all’.8In contrast, for a patient who lacks capacity, decisions are taken for her,
in her best interests, and, according to the statute, her wish to refuse treatment
is simply one relevant factor. My goal in this article is to consider whether
it might be possible to soften the capacity cliff edge by ensuring that the
best interests decisions which flow from a finding of incapacity give greater
weight to the views and preferences of the person who lacks capacity, where
they matter, or did matter deeply to her. Of course, there might be other ways
to soften the capacity cliff edge, for example by providing that the wishes of a
patient who only just fails the capacity test should carry more weight than those
of a patient who is minimally conscious. This, however, would fail to capture
3 G. Richardson, ‘Mental capacity in the shadow of suicide: What can the law do?’ (2013) 9
International Journal of Law in Context 87.
4 W. Martin, S. Michalowski, T. J¨
utten and M. Burch, ‘Achieving CRPD Compliance: Is the
Mental Capacity Act of England and Walescompatible with the UN Convention on the Rights
of Persons with Disability? If not, what next?’ (Essex Autonomy Project, 2014).
5 M. Gunn, ‘The Meaning of Incapacity’ (1994) 2 Medical Law Review 8.
6 On the fiction of the ‘unencumbered, free, rational decision maker’, see further, J. Herring,
Vulnerable Adults and the Law (Oxford: OUP, 2016).
7 J. Herring, ‘Losing It? Losing What? The Law and Dementia’ (2009) 21 Child and Family Law
Quarterly 3; J. Coggon, ‘Mental Capacity Law, Autonomy, and Best Interests: An Argument for
Conceptual and Practical Clarity in the Court of Protection’ (2016) 24 Medical Law Review 396.
8Re MB (An Adult: Medical Treatment) [1997] 2 FLR 426 at [30] per Butler-Sloss LJ. See also Re
T[1992] EWCA Civ 18 at [3] per Lord Donaldson MR: ‘This right of choice is not limited
to decisions which others might regard as sensible. It exists notwithstanding that the reasons for
making the choice are rational, irrational, unknown or even non-existent’.
248 C2018 The Author. The Modern Law Review C2018 The Modern Law Review Limited.
(2018) 81(2) MLR 247–281
Emily Jackson
the fact that, before losing consciousness, the minimally conscious patient may
have had values and beliefs that were profoundly important to her.
Jonathan Herring has argued that when the inherent jurisdiction is used to
protect vulnerable but capacitous adults,9it can be used to correct a different de-
fect that results from the Mental Capacity Act’s binary ‘all or nothing’ approach
to capacity,10 ‘by offering the potential for legal intervention when a person
has capacity, but only just’.11 The inherent jurisdiction, according to Jonathan
Herring and Jesse Wall,12 and the President of the Family Division,13 is an ex-
ample of ‘judicial law-making’, which serves to soften the capacity cliff edge in
order to recognise, controversially,14 that some adults who might pass the men-
tal capacity test nevertheless need to be protected from abuse. My focus in this
article is instead on adults who fail the statutory mental capacity test, but who
have (or had) core values and preferences that matter deeply to them. For such
patients, I argue that a different softening of the effects of the capacity cliff edge
may be necessary in order to treat them with appropriate respect and dignity.
Of course, it could be argued that, in practice, the judiciary is perfectly
capable of placing more weight on an incapacitated adult’s core values and
beliefs. Indeed, we could point to the Mental Capacity Act itself and its appli-
cation in the courts, discussed in more detail in the following section, in order
to demonstrate that the current law is flexible enough to accommodate an
explicitly patient-centred approach to best interests.15 Most medical decisions
for people who lack capacity do not come before the courts, however, but
are made instead by clinicians, with input from those close to the patient. In
its post-legislative scrutiny of the Mental Capacity Act, the House of Lords
Select Committee found that ‘especially in medical settings, the concept of
best interests as defined by the Act was not well understood’.16 In particular, it
found that:
Best interests decision-making is often not undertaken in the way set out in the
Act: the wishes, thoughts and feelings of P are not routinely prioritised. Instead,
clinical judgments or resource-led decision-making predominate.17
And while there is evidence that the judiciary is increasingly willing to take
seriously its duty to consider matters from the patient’s point of view, Lucy
9 It should be noted that there are multiple other uses of the inherent jurisdiction, the scope of
which was described in Re B (Secure Accommodation: Inherent Jurisdiction) (No 1) [2013] EWHC
4654 (Fam) at [20] as ‘theoretically limitless’.
10 Herring, n 7 above, 56.
11 ibid, 71.
12 J. Herring and J. Wall,‘Autonomy, capacity and vulnerable adults: filling the gaps in the Mental
Capacity Act’ (2015) 35 Legal Studies 698.
13 J. Munby, ‘Protecting the Rights of Vulnerable and Incapacitous Adults—The Role of the
Courts: An Example of Judicial Law Making’ [2014] 26 Child and Family Law Quarterly 64.
14 See, for example, M. Dunn, I. Clare,and A. Holland, ‘To Empoweror To Protect?Constr ucting
the ‘vulnerable adult’ in English Law and Public Policy’ (2008) 28 Legal Studies 234; J. Miles,
‘Family Abuse, Privacy and State Intervention’ [2011] 70 Cambridge Law Journal 31.
15 See, for example, Aintree University Hospitals Foundation Trust vJames [2013] UKSC 67 at [45].
16 House of Lords Select Committee on the Mental Capacity Act 2005, Report of Session 2013–14
Mental Capacity Act 2005: post-legislative scrutiny, para 92.
17 ibid, para 104.
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(2018) 81(2) MLR 247–281 249
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