Is reform of the Mental Capacity Act 2005 and its Code of Practice needed in the area of end of life decision-making for patients without decision-making capacity?

Is reform of the Mental Capacity Act 2005 and its Code of Practice needed in the area of end of life decision-making for patients without decision-making capacity?

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Introduction

 

This article is divided into three parts. My aim is to consider if the Mental Capacity Act 2005 (MCA) and its Code of Practice provide an infallible benchmark for making assessments regarding incapacitated patients in end of life cases. In part one, I identify the right to make an advance decision to refuse life sustaining treatment as the topic for consideration. I briefly discuss the importance of this right and highlight the relevant provisions of the MCA and its Code of Practice applicable to end of life decision making. In part two, I identity formality and applicability as two potential obstacles to the validation of advance decisions. I further reflect on caseswhere the application of these MCA provisions has, or would have, resulted in unfavourable outcomes for patients without decision-making capacity. In part three, I consider a possibility whereby the obstacles in part two may not necessarily infringe an incapacitated person’s prior autonomous decision as his best interest can be referred to in cases of vague advance decisions. However, I find that the best interest analysis often favours the preservation of life when an incompetent person’s wishes and feelings are uncertain. Even though my findings show that the MCA favours the preservation of life over respect of patient’s autonomy in end of life decision-making for patients without decision-making capacity, I am uncertain if this alone is enough to suggest reform.

 

 

1. Patients right to refuse life sustaining treatment and the legal recognition of advance decisions

 

The right to refuse life-sustaining treatment is an established principle in English Common Law. This right was underpinned in Airedale NHS Trust V Bland where, speaking on the validity of refusing life-sustaining treatments, Lord Goff stated ‘the principle of self-determination requires that respect must be given to the wishes of the patient, so that if an adult patient of sound mind refuses (treatment), however unreasonably… the doctors responsible for his care must give effect to his wishes’. Lord Goff further went on to hold that advance decisions to refuse treatments in the future are binding but included a caveat, as he said ‘though in such circumstances especial care may be necessary to ensure that the prior refusal of consent is still properly to be regarded as applicable in the circumstances which have subsequently occurred’. On this basis, it can be said that while an advance decision to refuse future treatments is theoretically as binding as a contemporaneous refusal, this may not always be the case in practice.

 

Under this premise, the MCA was tasked to cumulate the common law requirements of a valid advance decision which will focus specifically on providing appropriate safeguards and protecting the autonomy of a patient without decision-making capacity. While the Act was successful in fulfilling the former aim, it was partly flawed in fulfilling the latter. Sections 24, 25 and 26 of the Act, the code of practice and explanatory notes codify the relevant legal requirements of an advance decision. An advance decision, pursuant to section 24 (1), is a decision made by a competent patient over the age of 18 to refuse a specified treatment after loss of capacity. Unless a refusal of life sustaining treatment, an advance decision need not be in writing, can be expressed in layman terms and withdrawn or altered while the patient still has capacity. An advance decision must be in writing, signed and witnessed if it applies to the refusal of life sustaining treatment. While Section 25 (2) address the validity of an advance decision, sections 25 (3) (4) (5) discuss its applicability. In addition, the court’s role in validating a decision is set out in section 26 of the Act and Code of Practice 9.67.

 

A notable omission from the act is the uncertainty surrounding the definition of basic care and the response of the Law to its refusability. Although the Code of Practice helpfully states that ‘an advance decision cannot refuse actions that are needed to keep a person comfortable (sometimes called basic care...)... Section 5 of the Act allows healthcare professionals to carry out these actions in the best interests of a person who lacks capacity’, the act itself does not explicitly address this. Similarly, the General Medical Council’s (GMC) guideline has stated that ‘Food and drink can be refused by patients at the time it is offered, but an advance refusal of food and drink has no force.’ It remains unclear whether the court will be bound by the code of practice or GMC’s guideline on this issue.

 

 

2. Potential obstacles to the validation of advance decisions: Formality and Applicability

 

A. Formality

A notable feature of section 25 is that it is slightly heavy on formal requirements regarding the validity of an advance decision to refuse life sustaining treatment. This may not really be surprising, bearing in mind that the recommendations made prior to the Act’s enactment prioritised the issue of formality. In a recommendation made by the Joint Committee on the Draft of Mental Incapacity Bill, it was stated that ‘In most circumstances we believe that it would be reasonable for the Bill to require that ADs to refuse treatment should be recorded in writing and witnessed by two independent persons having no financial interest in that person’s estate.’

 

Unsurprisingly, the post-MCA cases have generally followed this requirement. In NHS V D, although a patient prior to being in a permanent vegetative state had expressed a clear view to refuse medical treatment if such only had the purpose of extending a reduced quality of life, the advance decision was found invalid as the patient’s signature was not witnessed. Ruling on this issue, Jackson J held that the patient’s views ‘cannot directly be acted upon in the current situation because they do not comply with the understandably strict requirements of the Mental Capacity Act 2005’. So although the patient had written and signed the decision- fulfilling the requirements of sections 25 (6) (a) and (b) - it came short of sections 25 (6) (c) and (d) which states that the signature must be witnessed and the decision signed by the witness. Although the first two provisions are reasonable, the third and fourth are arguably onerous on the patient.

 

At this juncture, an important question to consider when assessing if the Act is in need of reform is whether a strict formality truly reflects the autonomy of an incapacitated patient. In NHS V D, it appeared that Jackson J did not doubt that the patient’s view were his own. His deliberation suggested that the only reason he would not uphold the validity of the patient’s advance decision was its flawed formality. While the patient’s view could be less unambiguous in other cases, there will be cases like NHS v D where the patient’s wish as discussed above is clearly articulated and signed but fall short of the witness signature requirement.

 

In addition to the stringent formality, the standard of proof in advance decision cases is on the side of the patient. In a pre-MCA case, HE v A Hospital NHS Trust, the court refused a blood transfusion on a member of the Jehovah’s Witness who had previously written an advance decision to that effect. Munby J held that the burden of proof in advance decision cases is on person wishing to establish decision. In this situation, the heavy burden of proof coupled with the aforementioned strict formality place a considerable amount of hindrance on the decision. Commenting on the issue, Heywood rightly states ‘In this context, there should not be a more demanding standard of proof required from one side than the other….’

 

Prior to the inception of the Act, the Government was wary about the stringent formalities put forward by the Mental Incapacitated Bill. Commenting on this issue, the government maintained that ‘The making of an advance decision is a personal choice; it is therefore only right that the format of the advance decision should also be a personal choice’. Although this may be interpreted as the government’s anticipation of the forthcoming formality problem, this and other pro-autonomy arguments put forward simply did not hold water.

 

Moreover,deciding whether reform of section 25 (6) is needed will ultimately depend on the interpretation of autonomy applied in assessing the validity of an incapacitated patient’s advance decision. Although autonomy is usually conceived simply as a right of self-determination, the uncertainty surrounding the authorship of an unwitnessed decision may question whether autonomy can equally be applied to capacitated and incapacitated patients. As Maclean observes, the stricter requirement will ‘make it more likely that what is presented to the doctor as an advance directive more closely reflects the autonomous choice of the patient’. To give an instance, upholding a written wish- not signed by a witness- of a competent patient to refuse life sustaining treatment in the future may be rightly interpreted as respecting the patient’s right of self-determination but not necessarily respecting his autonomous choice since he is now incapacitated and there is no sufficient proof that he wrote the directive. While the self-determination conceptualisation of autonomy sets out to empower people who lack mental capacity, the strict approach conceptualisation protect and supports them.

 

 

B. Applicability (Unanticipated circumstances)

 

Section 25 (4) (C) MCA states that an advance decision is not applicable when ‘there are reasonable grounds for believing that circumstances exist which P did not anticipate at the time of the decision and which would have affected his decision had he anticipated them’. Examples of unanticipated circumstances, as seen in the Code of Practice, range from pregnancy to developments in medical treatment that the person did not foresee. Although the latter mentioned examples seem helpfully straightforward, this MCA provision and the related Code of Practice provide broad and unclear guidelines for the assessor of the validity of an advance decision. For instance, the Act does not reflect on the well-known unanticipated circumstance associated with Margo. In this anecdote, Margo has Alzheimer’s disease but shows a significant level of grace in her de-generation. She consistently displays behaviours suggestive of a happy person. The consideration therefore is, as deliberated by Dworkin, whether Margo’s advance decision to refuse life sustaining treatment for diseases associated with her Alzheimer’s disease - provided she drafted one- should be respected regardless of its ignorant of her unanticipated circumstance. Opinion with regards to the validation of her advance decision is split. While Dresser maintains that a prior decision can be ignored in situations where patients have found contentment in their new state, Dworkin disagrees. In doing so, the latter argues that the assessor should give ‘effect to her prior wishes despite the value she appears to obtain from her life as an individual with dementia’.

 

Further, it seems like an interpretation of section 25 (4) (c) may theoretically favour the preservation of life over a competent patient’s autonomy. Thus, even though opinion with regards to respecting Margo’s advance decision is split between those in support of her self-determination right- who will uphold her advance decision- and those that support the preservation of life- who will embrace her unanticipated circumstances as a positive outcome, the broadness of section 25 (4) (c)’s unanticipated circumstances is likely to favour the latter. The gist here is that the provision’s broadness theoretically gives an assessor the latitude to interpret Margo’s new found happiness as an unanticipated circumstance. Applying section 25 (4) (c) to a scenario similar to that of Margo, Jackson states ‘The scope of section 25 (4) (c) is potentially extremely broad since it would almost always be possible to argue that the patient issued their AD in a state of relative ignorance about what it would actually be like to be incapacitated.’ From these considerations, the argument for reform in this area is possibly stronger than in the area of formality discussed in the previous section.

 

 

3. Best Interest

 

The best interest test is an established English Law principle utilised in decision making for patients without capacity. If an advance decision is invalid, the assessor must consider what will be in the patient’s best interest when making an end of life decision. It was held in HE V A Hospital NHS Trust,a pre-MCA case, that the doctor must treat the patient according to his best interest whenever an advance decision is doubtful. More recently, Jackson J held in An NHS Trust v D that ‘had there been anything to put in the balance against the other evidence, D’s wishes would have carried very great weight with me.’ In this case, although the patient’s advance decision did not meet the strict requirement of life sustaining treatment set out in 25(5) and 25(6) as his signature had not been witnessed, the court referred to his section 4 (6) past wishes and feelings in accordance with section 1(5) of the MCA which states that ‘An act done, or decision made, under this Act for or on behalf of a person who lacks capacity must be done, or made, in his best interests.’ Incidentally, the decision made by the court in An NHS Trust v D after a best interest analysis was the same as D’s advance decision. To this end, it may then be tempting to project that the ambiguity of an advance decision will not necessarily infringe a competent person’s prior autonomous decision because even though a valid advance decision will disregard the best interest principle, this principle can subsequently be referred to in cases of ambiguous advance decisions. From this premise, it can be argued that reform of the MCA regarding end of life decision-making for incapacitated patients should focus instead on making dominant the patient’s autonomous wishes and feelings- as set out in the best interest analysis. However, there are two significant obstacles to this approach.

 

First, the guidelines set out in section 4(6) are subject to various interpretations. The provision only instructs that the person making the best interests assessment consider wishes, feelings, beliefs and values. The word consider may allow a Judge to apply only what he thinks are the most important values of the patient. For example, Jackson J’s association in An NHS Trust V D of the patient’s private life and a distaste for being kept alive by medical treatment of intrusive nature may be unique to the Judge. The issue of the vagueness of best interest was criticised in the draft version of the Mental Incapacity Bill. In a Joint Committee proceeding, it was stated that ‘the concept of best interests is too vague and, since it was developed in the context of child law, too paternalistic to be applied to adults.’

 

The second obstacle, which flows neatly from the first, is that there is a general tendency to favour the preservation of life- as opposed to the respect of the patient’s right of self-determination- in cases where the validity of an advance decision is uncertain. This automatically applies to the best interests analysis carried out by the assessor. Paragraph 5.31 of the Code of Practice requires that ‘all reasonable steps which are in the person's best interests should be taken to prolong their life.’ This approach is also seen in case law. It was held in R (Burke) v GMC that the best interests of a patient will normally require preservation of life. In W v M and Others, tasked with assessing the best interests of a patient with an irreparable brain damage in the absence of an advance decision, the court refused to validate her prior expressed wish for the withdrawal of artificial nutrition and hydration (ANH). Baker J categorically held that ‘The principle of the right to life is simply stated but of the most profound importance. It needs no further elucidation. It carries very great weight in any balancing exercise.’

 

Recommendation for statutory reform on this issue will have to wrestle with the inherent preference for the preservation of life in end of life decision making. But interestingly, it appears that the court will favour an end of life wish of a patient with no prospect of recovery. This was certainly the case in An NHS Trust v D where an examination on D showed that his Permanent Vegetative State was irreversible. This could mean that while a worthwhile life is favourably viewed by the court, a worthless one is not. Perhaps the most notable exception to this established approach is the case of Re C (Adult: Refusal of Treatment), where the court was prepared to grant the patient’s refusal of leg amputation, which would have resulted in his death, even though the amputation would have kept him alive. Hence, contrary to D’s life, C’s life was worthwhile. It can thus be argued, by those against reform to eradicate the preservation of life principle, that respecting the wish of a life not deemed worthwhile to refuse invasive medical treatment which could lead to death is not necessarily conflicting the preservation of life as this life may be viewed as worthless.

 

 

Conclusion

 

Deciding whether reform of the MCA and its Code of Practice is needed in end of life decision-making for incapacitated patients will depend on two complex considerations. First, what definition of autonomy is most appropriate when assessing the validity of an advance decision? Secondly, which medical practice principle- out of the preservation of life and respect for patient’s autonomy- should be dominant when assessing the validity of an advance decision? Although the above considerations may suggest that the Act favours the preservation of life over respect of patient’s autonomy in end of life decision-making for incapacitated patients, this alone may not be enough to suggest reform. Both principles have strengths and flaws. While the preservation of life principle provides safeguards that protect incapacitated patients, respect of patient’s autonomy empowers them. The flaws of the Act that I have considered here result from a compromise taken by the government when deciding whether the protection or the empowerment of incapacitated persons ought to be paramount. The difficult task of formulating a statute that consistently reflect both of these principles may have proved insurmountable for the government.

 

 

Bibliography

 

Airedale NHS Trust V Bland [1993] AC 789

 

Alasdair Maclean, ‘Advance directives and the rocky waters of anticipatory decision-making’ Vol. 16, No. 1, pp. 1-22 (2008)

 

An NHS Trust v D [2012] EWHC 885 (COP)

 

Emily Jackson, ‘Medical Law: Text, Cases and Materials’ 3rd edn OUP (Oxford, 2013)

 

General Medical Council, ‘Treatment & care towards the end of life: good practice in decision making’ (2010) Available online at < http://www.gmc-uk.org/guidance/ethical_guidance/end_of_life_patient_nutrition_and_hydration_needs.asp> Accessed 20th April, 2015

 

HE V A Hospital NHS Trust [2003] EWCA 1017 (Fam)

 

H Hinkka et al., ‘Decision making in terminal care: a survey of Finnish doctors' treatment decisions in end-of-life scenarios involving a terminal cancer and a terminal dementia patient’ Palliative Medicine 16: 195 – 204 (2002)

 

House of Commons Standing Committee A, ‘Mental Capacity Bill: Advance decisions to refuse treatment: general’, Hansard Source. 28 October 2004

 

House of Lords House of Commons Joint Committee on the Draft Mental Incapacity Bill, ‘Draft Mental Incapacity Bill’ Volume 1 Session 2002–03 (2003)

 

House of Lords, ‘Mental Capacity Act 2005: post-legislative scrutiny’ Select Committee on the Mental Capacity Act 2005, Report of Session 2013–14 (13th March 2014)

 

Mental Capacity Act 2005

 

Mental Capacity Act 2005 Explanatory Notes

 

Mental Capacity Act Code of Practice

 

Re C (Adult: Refusal of Treatment) [1994] 1 W.L.R. 290

 

Re T (Adult: Refusal of Treatment) [1993] Fam. 95

 

Rob Heywood, ‘Revisiting advance decision making under the mental capacity act 2005: A tale of mixed messages’ Medical Law Review, Vol. 23, No. 1, pp. 81–102 (2014)

 

W v M and Others [2011] EWHC 2443 (Fam)

 

 

 

 

Airedale NHS Trust V Bland [1993] AC 789 at para 864. This issue was also referenced in Re T (Adult: Refusal of Treatment) [1993] Fam. 95 at para 103, when Lord Donaldson held that an advance decision will only be recognised if ‘clearly established and applicable in the circumstances’. See also HE v A Hospital NHS Trust [2003] EWHC 1017 (Fam) at para 19 and Re T (Adult: Refusal of Treatment) [1993] Fam. 95

Ibid

Emily Jackson, ‘Medical Law: Text, Cases and Materials’ 3rd edn OUP (Oxford, 2013) p. 905

Mental Capacity Act 2005 s. 24 (1)

Ibid ss. 24 (2) (3) (4) and (5)

Ibid s. 25 (6)

Mental Capacity Act 2005 Code of Practice 9.28

General Medical Council, ‘Treatment & care towards the end of life: good practice in decision making’ (2010) Available online at < http://www.gmc-uk.org/guidance/ethical_guidance/end_of_life_patient_nutrition_and_hydration_needs.asp> Accessed 20th April, 2015. [109] Note 31

The draft version of the Act was previously called the Mental Incapacity Bill

House of Lords House of Commons Joint Committee on the Draft Mental Incapacity Bill, ‘Draft Mental Incapacity Bill’ Volume 1 Session 2002–03 (2003) r. 205

An NHS Trust v D [2012] EWHC 885 (COP)

Ibid at para 16

HE v A Hospital NHS Trust [2003] EWHC 1017 (Fam) at para 46. This approach remain the same under the MCA

Rob Heywood, ‘Revisiting advance decision making under the mental capacity act 2005: A tale of mixed messages’ Medical Law Review, Vol. 23, No. 1, pp. 81–102 (2014) p. 87

House of Commons Standing Committee A, ‘Mental Capacity Bill: Advance decisions to refuse treatment: general’, Hansard Source. 28 October 2004, Column no. 225

Alasdair Maclean, ‘Advance directives and the rocky waters of anticipatory decision-making’ Vol. 16, No. 1, pp. 1-22 (2008) p 11

See House of Lords, ‘Mental Capacity Act 2005: post-legislative scrutiny’ Select Committee on the Mental Capacity Act 2005, Report of Session 2013–14 (13th March 2014) where the Government said that the Mental Capacity Bill, introduced in June 2004, was intended to ‘empower, protect and support people who lack mental capacity’

Supra fn5 s. 25 (4) (c)

Ibid 9.43. See also Mental Capacity Act 2005 Explanatory Notes [88]

Rebecca Dresser, ‘Dworkin on Dementia’ 25(6) Hastings Center Report 32-28 (1995) p. 32

Ibid

Supra fn21

Ibid

Supra fn3 at p. 247

Supra fn13

Supra fn11 at para 17

Supra fn5 s. 1 (5)

See Mental Capacity Act Code of Practice 9.36

Supra fn5 s. 4 (6)

See An NHS Trust v D [2012] EWHC 885 (COP) at para 17

House of Lords House of Commons Joint Committee on the Draft Mental Incapacity Bill, ‘Draft Mental Incapacity Bill’ Volume 1 Session 2002–03 (2003) 80 citing Scottish Law Commission Report on Incapable Adults para 2.50

Supra fn8 5.31

R (Burke) v GMC [2004] EWHC 1879 (Admin)

W v M and Others [2011] EWHC 2443 (Fam)

Ibid at para. 222

Re C (Adult: Refusal of Treatment) [1994] 1 W.L.R. 290

Filed Under: Law