Dr Maria Dyban explores the choices open to patients who want to make provisions for future incapacity, and the clinician’s role in guiding them through the options

This article considers the Mental Capacity Act 2005,1 which allows people to make provision for future medical treatment in situations where they are unlikely to be able to make decisions for themselves, owing to impairment of their mental capacity. Such situations will become more common in the UK with the increase in life expectancy, an ageing population, and the rising prevalence of dementia. Primary care clinicians should be aware of what choices are available to patients and how to advise them, if they are approached regarding this subject. General practitioners should also understand which decisions are legally binding and what factors could potentially invalidate them.

A mentally capable person’s right to self-determination in choosing medical treatment is well established in English law. Lord Donaldson stated in Re T (Adult: refusal of treatment):2 ‘Prima facie every adult has the right and capacity to decide whether or not he will accept medical treatment, even if a refusal may risk permanent injury to his health or even lead to premature death.’

The provisions that a mentally capable person can make in case of future mental incapacity are covered in Scotland by the Adults with Incapacity (Scotland) Act 2000,3 and in England and Wales by the Mental Capacity Act 2005.1 Here we focus on the Mental Capacity Act 2005,1 which came into force in 2007 and makes the following provisions for future autonomous choices:

  • advance decisions
  • advance statements
  • lasting power of attorney (LPA).

Advance decisions

Advance decisions are refusals of future medical treatment. For example, a person can make an advance decision to refuse admission to hospital, or refuse resuscitation if his/her condition deteriorates and he/she is no longer able to express his/her views. Section 24(1) of the Mental Capacity Act 2005 states: ‘Advance decision’ means a decision made by a person (‘P’), after he has reached 18 and when he has capacity to do so, that if—

  1. at a later time and in such circumstances as he may specify, a specified treatment is proposed to be carried out or continued by a person providing health care for him, and
  2. at that time he lacks capacity to consent to the carrying out or continuation of the treatment, the specified treatment is not to be carried out or continued.

In the cases of most advance decisions, with the exception of the advance refusal of life-sustaining treatment, there are no specific requirements for them to be ‘valid’, as they can be expressed orally and in layman’s terms.4 Therefore it should be sufficient for a patient to state their decision and for a clinician to document the decision in the clinical notes.

‘Validity’ is one of the terms used in the Mental Capacity Act 2005 that needs to be satisfied for the decision to be legally binding, and will be discussed in detail later in the article (see section on ‘Validity and applicability of advance decisions’).

The simplicity with which advance decisions can be made means that they are relatively easy to implement; also, people retain their right to change their mind, as advance decisions can be altered at any time while the person has the required mental capacity. Alteration or withdrawal of an advance decision need not be in writing, except for decisions regarding life-sustaining treatment.5

Mental capacity

A clinician should be satisfied that the patient has mental capacity when making an advance decision and it is good practice to document the assessment of mental capacity in clinical notes when such a decision is made (see ‘Validity of advance decisions’). According to the principles of the Mental Capacity Act 2005, a person must be assumed to have capacity unless it is established to the contrary.

The assessment of mental capacity requires the following two questions to be asked:6

  • Does the patient have an impairment of, or a disturbance in functioning of, the mind or brain?
  • If the patient has such a disturbance or impairment, is he/she unable to make decisions for himself/herself, if he/she is unable to:
    • understand the information relevant to the decision
    • retain that information
    • use or weigh that information as part of the process of making the decision, or
    • communicate his/her decision (whether talking, using sign language or any other means)?

In practice, if something makes you as a clinician doubt a person’s mental capacity, you are required to make an assessment. First of all, you need to establish if there is any impairment of mind like a confusional state due to intercurrent illness, or the presence of a mental disorder. Once the impairment is established, you need to assess if the patient is able to make decisions for himself/herself. A person needs to be able to understand the benefits and drawbacks of proposed treatment, weigh up and retain such information, and also be able to communicate his/her decision.

Examples of people who may lack mental capacity include those with a head injury, or alcohol or drug intoxication, who are unable to make their own decisions. In such cases a clinician has to decide what is in the best interests of the individual.

Refusal of life-sustaining treatment

Life-sustaining treatment, according to the Mental Capacity Act Code of Practice,7 is ‘treatment necessary to keep a person alive’. Obvious examples of life-sustaining treatment are keeping a person on a ventilator, continuing renal dialysis, or administering clinically assisted nutrition and hydration.

The Mental Capacity Act Code of Practice states that whether treatment is life sustaining or not depends not only on the treatment but also on the circumstances in which the treatment is given.7 For instance, giving intravenous antibiotics for a life-threatening infection would be considered life-sustaining treatment, but giving oral antibiotics for a mild illness would not.

The AK case8 was one of the first cases where the advance refusal of life-sustaining treatment by a capable adult was respected. It was heard before the Mental Capacity Act 2005 came into force, and when difficult decisions had to follow case law. It involved a 19-year-old man with advanced motor neurone disease, who requested that his ventilator be switched off 2 weeks after he lost the ability to communicate. The patient was found to be mentally competent, as he was able to make decisions for himself, and his advance decision for his ventilator to be switched off at the appropriate time was followed.

The refusal of life-sustaining treatment, according to section 25 of the Mental Capacity Act 2005, must be in writing, and signed and witnessed. This does not mean that the patient has to write it himself—the law also considers a decision recorded in medical notes, or electronic records, to be in writing. If the patient is unable to sign, then another person can sign at his/her direction and in his/her presence, as well as in the presence of a witness.

Advance decisions made by patients with a mental health disorder

Both the Mental Health Act 1983 as amended by the Mental Health Act 20079 and the Mental Capacity Act 20051 apply to mental illness, so which legislation should be followed?

Most primary care clinicians would only need to use the Mental Health Act 1983 as amended by the 2007 Act to detain a patient with mental illness in a hospital. The provisions of the Mental Capacity Act 2005 apply equally to patients with and without mental health disorders, as the impairment of the functioning of the mind does not necessarily affect a person’s ability to make decisions for himself or herself.

Advance decisions regarding medical treatment made by patients with a mental health disorder remain legally binding.10 A person with mental illness can make an advance refusal of a drug treatment for mental disorder in accordance with the Mental Capacity Act 2005, sections 5 and 6. There are additional safeguards given by the Mental Health Act 198311 where the advance refusal of electro-convulsive therapy must be respected, unless such treatment is necessary to save the patient’s life or prevent serious deterioration.

Those provisions give patients with mental health problems the same autonomy regarding future treatment choices as people without mental health problems. However, an advance refusal of treatment or refusal of admission for mental disorder can be overridden if a person is detained under the Mental Health Act 1983 (Part IV).

Validity and applicability of advance decisions

In order to be legally binding, advance decisions must be ‘valid’ and ‘applicable’ to the specific clinical situation described.

Validity of advance decisions

As stated previously, for an advance decision to be valid, the requirements are simple, as it can be oral and expressed in layman terms.

How might advance decisions be invalid? Firstly, they can be invalidated by the competent patient’s later decision or by the proxy of an LPA if the donee was given the authority to override the previous advance decision.12 For instance, if a person made a written advance decision not to be kept alive on a ventilator in the event that he/she became completely paralysed, he/she would invalidate this earlier decision if a few years later he/she changed his/her mind and wanted to be kept alive whatever the circumstance. This change of mind would not have to be in writing unless (as in the above example) it related to life-sustaining treatment. Similarly, the same person could appoint a donee of LPA and give him/her the specific power to override and invalidate his/her previous advance decision.

Secondly, advance decisions can be invalid when the person ‘has done anything else clearly inconsistent with the advance decision remaining his fixed decision.’13 Changes in a person’s circumstances like a change of religion, getting married, or having children, can potentially invalidate a previous advance decision.14 This is illustrated in the case of HE v A Hospital NHS Trust,15 which was decided prior to the Mental Capacity Act 2005. The patient in this case was a Jehovah’s Witness who signed an advance decision refusing blood transfusion, even though it was possible that the refusal could lead to her death. Her advance decision was ignored when she subsequently needed a blood transfusion, as by that time she was engaged to a Muslim man and was no longer an active Jehovah’s Witness.

Another ground for invalidating an advance decision could be if a decision was so irrational as to make a clinician doubt that the patient had mental capacity at the time the decision was made. Unfortunately, the Mental Capacity Act 2005 does not state that mental capacity must be formally assessed before drafting, changing, or withdrawing an advance decision. Therefore it would be good practice to document the assessment of mental capacity in clinical notes when an advance decision is made. It is also recommended that advance decisions are reviewed over time.

Applicability of advance decisions

‘An advance decision is not applicable to the treatment in question if—

  • that treatment is not the treatment specified in the advance decision,
  • any circumstances specified in the advance decision are absent, or
  • there are reasonable grounds for believing that circumstances exist which P did not anticipate at the time of the advance decision and which would have affected his decision had he anticipated them.’16

What should the clinician do if in doubt regarding the validity or applicability of an advance decision? Clinicians often make their decisions in favour of life preservation based on the ethical concept of beneficence, as well as to avoid the possibility of negligence charges. The state also has a positive obligation under the Human Rights Act 199817 to preserve the patient’s life, and that should be balanced against the patient’s right to self-determination.

Section 26 (2) of the Mental Capacity Act 2005 states: ‘A person does not incur liability for carrying out or continuing the treatment, unless, at the time, he is satisfied that an advance decision exists which is valid and applicable to the treatment.’ The decision is at the clinician’s discretion. The Act provides a similar defence to the clinician regarding withdrawal and withholding of medical treatment, but the clinician must ‘reasonably believe’, rather than be ‘satisfied’, which applies a more objective standard.

The Act supports clinical discretion of a doctor who acts in good faith, and life-sustaining treatment can therefore be lawfully provided ‘… while a decision as respects any relevant issue is sought from the court’.18

Advance statements

An advance statement is an advance request for a specific treatment19 and is relevant when a clinician needs to make a decision as to what is in the best interests of the mentally incompetent patient, but it is not legally binding. The rationale is that the specific treatment may or may not be appropriate for a given medical condition or clinical situation, but the person can still try to exercise his/her right to self-determination by expressing this preference ahead of time. Clinicians should take this advance statement into consideration, but should also employ their clinical judgment and ethical principles, and these may well override the person’s previous treatment choice.

When an advance statement is drafted, the patient needs to specify the treatment and the circumstances, both of which need to be clear and unambiguous.

In the Burke case,20 a patient with a progressive degenerative condition was wheelchair-bound, but retained mental capacity. The patient did not want treatment, including artificial feeding and hydration, to be withdrawn from him in future. He was also trying to challenge the lawfulness of the General Medical Council’s (GMC’s) guidance on withholding medical treatment. The court stated that the clinician should use a ‘best interests’ judgment for the mentally incapable patient, otherwise he/she would be guilty of murder for trying to bring about the patient’s death.

Advance statements are therefore not legally binding on doctors, in other words patients can only express their preference, but cannot exercise their full autonomy.

Following the famous Bland 21 case, artificial or clinically assisted nutrition and hydration are regarded in law to be medical treatment. This case concerned a young man who was in a persistent vegetative state following the Hillsborough football disaster. He had no prospect of recovery and he was kept alive by clinically assisted nutrition and hydration; an application was then made to the court to withdraw these services. After a long debate, it was confirmed in law that clinically assisted nutrition and hydration is a form of medical treatment and in that case the court decided that it had to be discontinued.

The GMC guidance on Treatment and care towards the end of life: good practice in decision making22 (see www.gmc-uk.org/static/documents/content/Treatment_and_care_towards_the_end_of_life_-_English_1011.pdf), which replaced previous guidance (Withholding and withdrawing life-prolonging treatments, 2002), provides a detailed reference on how to approach difficult treatment decisions.

The GMC guidance22 states that decisions regarding clinically assisted nutrition and hydration have to be considered separately. A mentally competent patient’s current wishes have to be respected as well as previous valid and applicable advance decisions. If a patient is mentally incompetent, the decisions have to be based on the patient’s best interests. Clinicians still require a ruling from the court when considering withdrawing clinically assisted nutrition and hydration from patients in persistent vegetative state.

Lasting powers of attorney

Donees of LPA can be nominated under section 9 of the Mental Capacity Act 2005 by a ‘mentally competent person’ (donor), to consent to, or refuse, medical treatment on behalf of the donor, in the event of the donor’s future incapacity. A donor is a person authorising other(s) to act on their behalf.

In order to register an LPA, a certificate must be issued to confirm that the donor has entered into agreement with full understanding and without coercion. In England and Wales the LPA must be registered with the Office of the Public Guardian.23 The volume of applicants to register LPAs continued to rise from 171,000 in 2010–2011 to 200,000 in 2011–2012.24 It is possible to find the forms and guidance on registering LPAs on the Office of the Public Guardian website.23

There are two types of LPA, one covers property and financial affairs, and the other health and welfare. The donor can appoint several donees of LPA and therefore can choose, for example, one person to deal with their health affairs and another to deal with their property.

The LPA registration form consists of parts A, B, and C. A GP may be asked to sign parts A or B. In part A the GP can be asked to witness the patient’s (donor’s) signature.

Part B is a certificate to confirm the patient’s understanding. As a GP with the relevant professional skills, you may be asked to sign a statement by which you must confirm that the donor understands the purpose and scope of the LPA, and is not under undue pressure. The patient’s mental capacity must be assessed and documented in the medical records and the clinician should be prepared to justify their assessment if challenged.

In order for a donee of LPA to refuse life-sustaining treatment on the patient’s behalf, the donor must have specifically authorised that this is the case.25 The donee of LPA cannot override valid advance decisions,26 unless he or she was specifically given that power.

Court of Protection

The Court of Protection considers the patient’s best interests in respect of acts and omissions and has the same powers as the High Court. It gives protection to the patient in case of uncertainties regarding best interests, capacity, or disputes between clinicians, the donee of LPA, and others involved in the patient’s care. The Mental Capacity Act 2005 also establishes Public Guardians who supervise the donees of LPA. In the case where the donee of LPA does not act in the best interests of the donor, or fraud is suspected, the donee of LPA can be removed by the Court of Protection.27 In such situations, treatment to prevent a serious deterioration in condition, including life-sustaining treatment, can be lawfully given to a donor while the decision of the Court of Protection is awaited.

Summary

The wishes of mentally competent patients have to be respected. If there is a valid and applicable advance decision to refuse medical treatment, it is legally binding.

Advance statements or requests for medical treatment are not legally binding, but they should be incorporated in the decisionmaking of the clinician when deciding on the best interests of mentally incompetent patients.

Lasting powers of attorney have to be registered with the Office of the Public Guardian. A donee of LPA can refuse medical treatment on behalf of the patient, but cannot override a previous advance decision and cannot request the withdrawal of life-sustaining treatment unless this power was specifically given by the patient (donor).

In cases of dispute, uncertainties regarding best interests, or capacity, clarification can be sought from the Court of Protection. While decisions of the Court are awaited, treatment to prevent a serious deterioration in condition, including life-sustaining treatment, can be lawfully given.

When a clinician encounters a clinical dilemma with a mentally incompetent patient, or a patient at the end of life, they must consult and follow the GMC guidance Treatment and care towards the end of life (see www.gmc-uk.org/static/documents/content/Treatment_and_care_towards_the_end_of_life_-_English_1011.pdf) and the Mental Capacity Act 2005 Code of Practice (see webarchive.nationalarchives.gov.uk/+/http:/www.justice.gov.uk/docs/mca-cp.pdf).

  1. Mental Capacity Act 2005. Available at www.legislation.gov.uk/ukpga/2005/9/contents (accessed 27 March 2013).
  2. Re T (Adult: refusal of treatment) [1992] 3 WLR 782, [1993] Fam 95 at 115 per Lord Donaldson.
  3. Adults with Incapacity (Scotland) Act 2000. Available at: www.legislation.gov.uk/asp/2000/4/contents (accessed 27 March 2013).
  4. Mental Capacity Act 2005, s 24(2), (4),(5).
  5. Mental Capacity Act 2005, s 24(4), (5).
  6. Mental Capacity Act 2005, ss 2(1), 3(1).
  7. Department of Constitutional Affairs. Mental Capacity Act 2005 Code of Practice, 23 April 2007, para. 5.29. Available at: www.legislation.gov.uk/ukpga/2005/9/pdfs/ukpgacop_20050009_en.pdf
  8. AK (Adult Patient) (Medical Treatment: Consent) [2001] 1 FLR 129.
  9. Mental Health Act 1983. Available at www.legislation.gov.uk/ukpga/1983/20/contents (accessed 11 April 2013).
  10. Department of Constitutional Affairs. Mental Capacity Act 2005 Code of Practice, 23 April 2007, para 13.37.
  11. Mental Health Act 1983, Part IV, s 58(A).
  12. Mental Capacity Act 2005, s 25(2)(a), (b).
  13. Mental Capacity Act 2005, s 25(2)(c).
  14. Herring J. Medical law and ethics. Oxford: Oxford University Press, 2006: 111.
  15. HE v A Hospital NHS Trust [2003] 2 FLR 408 (FD).
  16. Mental Capacity Act 2005, s 25(4).
  17. Human Rights Act 1998 and European Convention on Human Rights, art 2.
  18. Mental Capacity Act 2005, s 26(5).
  19. Mental Capacity Act 2005, s 4(6)(a).
  20. R (Burke) v General Medical Council [2004] EWHC 1879, [2005] EWCA Civ 1003.
  21. Airedale NHS Trust v Bland [1993] 1 All ER 821.
  22. General Medical Council. Treatment and care towards the end of life: good practice in decision making. GMC, 2010. Available at: www.gmc-uk.org/static/documents/content/Treatment_and_care_towards_the_end_of_life_-_English_1011.pdf
  23. Office of the Public Guardian website.
    www.justice.gov.uk/about/opg (accessed 27 March 2013).
  24. Office of the Public Guardian. Annual report and accounts 2011/12. Available at: www.justice.gov.uk/downloads/publications/corporate-reports/OPG/opg-annual-report-accounts-2011-12.pdf
  25. Office of the Public Guardian. Lasting power of attorney (form), available at: www.justice.gov.uk/downloads/forms/opg/lpa-hw-instrument.pdf.
  26. Mental Capacity Act 2005, ss 24–26.
  27. Mental Capacity Act 2005, s 22(3), (4). G