This extent wishes and values are under

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This paper will explain and evaluate the extent to which English medical law protects and respects the wishes, feelings, beliefs and values of non-capacitous patients, focusing on the role of the best interest test. I will argue that the ‘best interest’ approach to decision-making does not adequately protect and respect the wishes and values of adults who have been deemed to lack capacity, and that English medical law falls short of the standard set by the UN Convention on the Rights of Persons with Disabilities. After examining the legal authority on mental incapacity, I will focus on how decisions are made in the ‘best interest’ of the patient as seen in Section 4 of the Mental Capacity Act1. I will then explore recent cases and academic writings in order to evaluate to what extent wishes and values are under the ‘best interests’ principle, and explore alternative directions that English medical law could take. In this way I will provide evidence of the wishes and values of those adults who lack capacity being undermined or ignored by English medical law, thus supporting my thesis that there is not adequate protection.

It is possible to understand the concept of capacity in various ways. In the context of autonomy, it is the capacity to make decisions for yourself; in the context of liberty, it is the right to non-interference. English law assesses capacity functionally, by asking whether an individual can “use and understand information to make a decision, and communicate any decision made”.2 The statutory authority for medical capacity comes from Part 1 of the Mental Capacity Act (MCA), providing “a statutory framework to empower and protect people who may lack capacity to make some decisions for themselves”.3 Section 3 states that to be able to make a decision for himself, an individual must be able to understand, retain and weigh up information, and then communicate his decision,4  whilst Section 4 sets out the requirement for decision-makers to operate in the ‘best interests’ of the patient. A key principle is that ‘reasonably practical’ steps must be taken to incorporate the views and beliefs of the patient by those acting on his behalf.5 We can see this principle echoed in the international sphere – a United Nations convention requires that legislative measures regarding those without capacity must “respect the rights, will and preferences of the person”.6 Alongside the MCA, a specific ‘Court of Protection’ was established in order to deal with cases relating to decisions for non-capacitous patients (amongst other things), as an attempt to make it easier to access adequate consideration and representation in the courts. It is clear that there has been an attempt by English medical law to protect and respect the wishes and values of adults who lack capacity. However, in order to properly assess whether this attempt has been successful, we must evaluate the practical applications of the Act.

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For adults without capacity, decisions are made according to their best interests in the context of their specific circumstances, incorporating what medical staff can ascertain the patient’s wishes would be.7 The principle of working in the best interests of patients lacking capacity did exist in common law prior to being enshrined in the MCA – in one such case, Dame Butler-Sloss stated that “the principle of best interests…will incorporate broader ethical, social, moral and welfare considerations”.8 However, evidence suggests that this statement is idealistic, as “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”.9 This can be seen in the adult sterilisation case Re X, where Holman J did take the patient’s desire to have a child into consideration, but stated that “it remains objectively completely contrary to her…best interests”.10 Therefore we can see that the objectively judged best interests outweighed her explicitly stated wishes. In 2005 when the MCA  came into force, it’s aim was “an imperative to protect the interests of those unable to do so for themselves”.11 At the time, the legislation was described as “visionary” by the House of Lords Select Committee.12 The idea was that, much like a capacitous patient would consider whether a medical procedure was in their best interests generally, for a patient without capacity, this evaluative procedure is the responsibility of the courts.13 However, it is important to recognise that operating in the ‘best interests’ of a patient does not always mean that their views and beliefs will be followed completely – it was stated in a 2014 case that “‘wishes’ and ‘best interests’ should never be conflated, they are entirely separate matters which may ultimately weigh on different sides of the balance sheet”.14 The risk arises, therefore, that whilst they are considered, non-capacitous patients’ wishes and values’ are not always protected or respected.

The ‘best interests’ principle risks minimizing the importance of the patient’s views – in the case of Aintree v James, Lady Hale stated that “‘The purpose of the best interests test is to consider matters from the patient’s point of view. That is not to say that his wishes must prevail”.15 In one case, Cobb J stated that “while giving due weight to the patient’s wishes, and her fundamental rights…I have nonetheless come to the clear conclusion that the course of treatment the patient opposed would be in her best interests”.16 Another case, Re E,17 saw Jackson MJ rule that an advanced decision from a patient with anorexia was not binding, and stated that “the presumption in favour of the preservation of life is not displaced”, further adding that “a full, reasoned and contemporaneous assessment evidencing mental capacity to make such a momentous decision” was required. Although the patient E did all she could to provide guidance for how her wishes could be followed, with Jackson admitting that “particular respect is due to the wishes and values of someone who, although lacking capacity, is as fully and articulately engaged as E”, this was still ultimately disregarded by the courts. Cases regarding eating and body dysmorphic disorders often prove problematic, because it is difficult to comprehend why seemingly competent individuals would make decisions that clearly have adverse effects on their health, which explains why decisions such as Jackson’s occur. Nevertheless, Re E is a prime example of inadequate protection of a patient’s wishes.

A later case, also dealing with anorexia, saw Cobb J decided not to compel treatment upon the patient, stating that “I have endeavoured to put myself in the place of Ms X, and guided by what she has directly told me and others, I have considered what her attitude to the treatment is or would be likely to be”.18 In stark contrast to Re E, here the feelings of the patient are adequately protected, despite it not being best for the patient’s health. This raises the separate issue of the inconsistency brought about by the ‘best interest’ principle. Asking judges to weigh up multiple aspects and reach a decision makes it difficult to predict the outcome of a case. Whilst the patient’s wishes are protected in the latter case, uncertainty in the law is widely regarded as undesirable as it means that a patient cannot be secure in the knowledge that their wishes and values will prevail – thus supporting my conclusion that there is inadequate protection and respect.

Another noteworthy case is that of Wye Valley v Mr B.19 Mr B’s religious hallucinations led him to refuse a foot amputation which was required to keep him alive. Jackson J ruled that forcing an amputation would not be in his best interests, and stated that:

“…The wishes and feelings, beliefs and values of people with a mental disability are as important to them as they are to anyone else. I do not find it helpful to see the person as if he were a person in good health who has been afflicted by illness. It is more real and more respectful to recognise him for who he is: a person with his own intrinsic beliefs and values.”20

The conflict is clear here – what is in the best interests of Mr B as an individual suffering from these hallucinations is “at odds with the concept of best interests as it is used in a medical or clinical sense”.21  There has been a general trend in medical law to move away from a paternalistic model of ‘doctor knows best’ and allow the patient to have a say, and this continues across to patients without capacity. Jackson stated that “to think of Mr. B without his illnesses and idiosyncratic beliefs…is to speak of an unmusical Mozart”,22 recognising the importance of respecting the wishes of the patient – however, as shown by Re E this is inconsistent and does not always occur, which leads to my conclusion that there is not adequate protection.

Looking at the cases, it is clear that courts are keen to consider a patient’s wishes and values. However, there are opposing views on how successful this has been in reality. Judith Laing praised the progress made by the Act, stating that now “far more is required in the way of reasoned clarity before a person’s autonomy to decide for themselves can be undermined…the Act expressly enables others to make best interests decisions for those lacking mental capacity”.23 However, as shown by the cases discussed, consideration does not always mean respect and protection. Mary Donnelly stated that “the will and preferences/wishes and feelings of a person with impaired capacity should receive a higher degree of respect than has sometimes been the case”.24 The aforementioned case of Re E is an example of what Donnelly is saying – the patient’s rights were not respected to the extent they should have been, especially considering the formality of the advanced decision. Donnelly’s article also raises an interesting proposal that “the terminology of best interests should be replaced with a terminology of rights”.25 Her article cites commentary26 on the aforementioned UN Convention, as well as Irish legislation27 in order to suggest alternatives to the ‘best interests’ approach. Current English practice is inconsistent with the requirements set out by the Committee’s General Comment, which requires a “wills and preferences” model to replace “best interests”, and disapproves of the functional assessment of capacity. Changing to rights based language would arguably “ensure that persons with disabilities enjoy the right to legal capacity on an equal basis with others”.28 Alternatively, Irish legislation sets out principles similar to those contained in Sections 1 and 4 of the MCA, which they believe more accurately reflects the complexity of decision making – it is also suggested that “its adoption could help realign decision-making frameworks to afford greater recognition to a person’s will and preferences”.29 Another option could be to make a system of supported decision-making, as exists in Scotland, where the relevant act requires the exploration of a patient’s present and past wishes and beliefs, as well as every effort to involve the patient in the decision-making process (including special efforts for non-verbal patients).30 There are several different avenues which English medical law could take in order to avoid the problematic ‘best interests’ test, by which patients’ wishes and values would be better protected.

Looking at alternative structures already in practice, it is hard to argue that English medical law satisfactorily respects and protects the wishes and values of adults who lack capacity. The Select Committee noted that the term ‘best interests’ can be confusing, and academics have argued that changing to patient-centric, rights-based language would make it more clear that the wishes and values of non-capacitous patients are important. Therefore, whilst the Mental Capacity Act 2005 is a positive step towards patients’ rights, there is still inadequate protection and respect offered to the wishes, feelings, beliefs and values of adults who lack capacity offered by English medical law.

1 Mental Capacity Act 2005

2 ‘Consent to Treatment: Assessing Capacity’ (NHS England) Accessed on 21st December 2017

3 Summary by the Department for Constitutional Affairs (2005), quoted by Peter Herissone-Kelly, ‘Capacity and Consent in England and Wales: The Mental Capacity Act under Scrutiny’ (2010) 19 Cambridge Quarterly of Healthcare Ethics 344-352

4 Mental Capacity Act 2005 S3(1)

5 Helen Taylor, ‘What are ‘Best Interests’? A Critical evaluation of ‘Best Interests’ Decision-Making in Clinical Practice’ (2016) 24 (2) Med Law Rev 176-205

6 Convention on the Rights of Persons with Disabilities Article 12(4)

7 Mental Capacity Act 2005 S4

8 Dame Elizabeth Butler-Sloss in Re SL (adult patient: medical treatment) 2000 All ER (D) 683

9 Mary Donnelly, ‘Best Interests, Patient Participation and the Mental Capacity Act 2005’ (2009) 17 (1) Med Law Rev 1-29

10 Holman J in Re X (Adult Sterilisation) 1998 2 F.L.R

11 Helen Taylor, n.5

12 John Fanning, ‘Continuities of Risk in The Era of the Mental Capacity Act’ (2016) 24 (3) Med Law Rev 415-433

13 Helen Taylor n.5

14 Hayden J in Sheffield Teaching Hospitals NHS Foundation Trust v TH & Others 2014, quoted by Helen Taylor n.5

15 Lady Hale in Aintree v James 2013 UKSC 67, para 45

16 Cobb J in The Mental Health Trust and Others v DD and another 2014 EWCOP 11

17 Re E (Medical Treatment: Anorexia) (Rev 1) 2012 EWHC 1639, discussed by Helen Taylor n.5

18 Cobb J in A NHS Foundation v Ms X 2014 EWCOP 35

19 Wye Valley NHS Trust v Mr B 2015 EWCOP 60

20 Peter Jackson J in Wye Valley n.19

21 House of Lords Select Committee, Mental Capacity Act 2005: post-legislative scrutiny (2014) HL Paper 139 p.92

22 Peter Jackson J Wye Valley n.19

23 Judith Laing, Principles of Medical Law (4th edn, OUP 2017) pp. 561-562

24 Mary Donnelly, ‘Best Interests in the Mental Capacity Act: Time to say Goodbye?’ (2016) 24 (3) Med Law Rev 318-332

25 Mary Donnelly n.24

26 Committee on the Rights of Persons with Disabilities, ‘General Comment No.1’ (2014) CRDP/C/GC/1

27 Assisted Decision-Making (Capacity) Act 2015 (Ireland)

28 General Comment No.1 n.26, para 21

29 Mary Donnelly, n.24

30 Adults with Incapacity Act Codes of Practice paras 1.10-1.14, from Mental Welfare Commission for Scotland, ‘Good Practice Guide: Supported Decision Making’, (November 2016)


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