General ManaGeMent of DeMentia

Ethical and legal aspects of dementiarobin Jacoby

Abstractthe main ethical and legal issue in dementia is capacity to make de-

cisions and consent to treatment. Capacity, itself, is task-specific, but

some general principles can be applied, such as understanding the task,

weighing up the risks against the benefits and communicating a choice.

Many dementia sufferers lack some capacities, and decisions need to be

made for them. the new Mental Capacity act 2005 for england and Wales

seeks to maximize sufferers’ choice of who should make proxy decisions

for them in financial and personal matters, such as healthcare. With the

increase in home ownership in recent years, more elderly people have sig-

nificant estates to bequeath. those with dementia may lack the capacity

to make a valid will, the legal tests for which are clearly defined.

Keywords capacity; competence; power of attorney; proxy decision-

making; testamentary capacity

Mental competence (capacity)

The main ethical and legal issues that arise in dementia are those surrounding mental competence or capacity to make personal decisions.1 Doctors tend to talk of competence and lawyers of capacity, but in this context the words are essentially synonym­ous. Mental competence is task­specific, and incapacity to do one thing does not necessarily imply incapacity to do another. For example, a dementia sufferer may be competent to write a will but unable to manage her financial affairs. Also, because of task specificity, thresholds within types of competence may vary. Thus, one patient possessing only £5000 may be competent to handle her affairs, whereas another with a lesser degree of dementia may lack capacity because she disposes of £5 million, much of which is tied up in trusts and complex share portfolios.

Competence, like innocence, is presumed and incompetence must be established. Furthermore, status (e.g. detention) under the Mental Health Act (1983) does not necessarily confer incompe­tence. Nor is outcome a criterion by which to judge competence – competent people have the right to make wrong decisions.

Robin Jacoby DM FRCP FRCPsych is Professor Emeritus of Old Age

Psychiatry at the University of Oxford, UK. Previously he was a

consultant psychiatrist at the Bethlem Royal and Maudsley hospitals

in London. His research interests include medicolegal aspects of

psychogeriatrics, and the management of behavioural disorders in the

dementias. Conflicts of interest: none declared.

PSYCHiatrY 6:12 50

In spite of task specificity, some general principles can be applied to the assessment of competence (Table 1).2

Guardianship

One of the commonest problems arising in dementia is whether a patient is competent to decide where she should live, that is, whether she is at too great a risk to stay at home. Fortunately, the increasing provision of comprehensive home care allows more people to stay at home who previously would have been admit­ted to institutions. Furthermore, many relatives are prepared to accept an increased degree of risk for the dementia sufferer in favour of the freedom to stay at home. Compelling a person to live in a residential or nursing home under a guardianship order of the Mental Health Act should be a last resort used in a very few cases only, although a guardianship order to permit access by caregivers to the patient’s own home may be crucial in allow­ing the patient to continue to live where she wants to.

Management of financial affairs

If a dementia sufferer is incompetent to manage her financial affairs there are three mechanisms in England and Wales to deal with this.3

Power of attorney: implemented in April 2007 under the new Mental Capacity Act 2005, lasting power of attorney (LPA) replaces the former enduring power of attorney (EPA). This power, given usually but not necessarily to next of kin, entitles the attorney to do anything with the patient’s financial affairs that she could have done when competent, including the disposal of capital assets. In order to implement an LPA, the attorney must register it with the Court of Protection. The advantage of an LPA is that it provides choice to the donor, but it does not protect her from financial abuse, especially as attorneys are not closely supervised. The task specificity of competence is illustrated very clearly by the fact that legal precedent has established that one may be competent to donate power of attorney whilst at the same time being incompe­tent to manage one’s financial affairs. In such cases the attorney must register the LPA as soon as the donor has signed it. EPAs signed under previous legislation remain valid unless replaced by a LPA. With an EPA the attorney had no power to make any other type of decision for the dementia sufferer, such as healthcare or end­of­life decisions. However, such proxy decision­making is now permitted under the new LPA.

General criteria for competence

A person should be able to:

• understand information relevant to the required decision

• use the information rationally (e.g. make a risk/benefit

comparison)

• appreciate the situation and its consequences

• communicate choices

(adapted from appelbaum and Grisso, 1988.2)

Table 1

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General ManaGeMent of DeMentia

Manager: for those who become incompetent to manage their affairs but have not donated power of attorney, an application for appointment of a manager must be made to the Court of Protec­tion. Managers are equivalent to receivers under previous legisla­tion. This process is more time­consuming and costly and affords less choice than LPA, but a manager is more constrained and may not, for example, dispose of capital assets without permis­sion of the Court of Protection.

Appointee: when an incompetent person has no assets, some­one, often an employee of the local social services department or NHS trust, may act as an appointee with the task of collecting benefits and ensuring that they are spent for the comfort and well­being of the dementia sufferer.

Making a will: because dementia is essentially a disease of old age, and the rise in home ownership has led to a wider distri­bution of wealth, the issue of competence to write wills (testa­mentary capacity) commonly arises.4 Most of the legal tests for testamentary capacity were set out in a judgment in the case of Banks v. Goodfellow in 1870 (see Table 2). A testator’s know­ledge of her estate need not be down to the last penny, but rather a broad understanding of what she possesses: for example, ‘I own my house; I have a few thousand pounds in the bank, and some shares’ – a solicitor may sort out the details. If the testator wants to exclude from her will someone who might reasonably expect to inherit (e.g. offspring), she must be able to understand their claim, not be confused as to their identity and not harbour any false beliefs about them that result from dementia or any other mental disorder. On the other hand, as was the case with John Banks in 1870, delusions that do not influence the contents of the will do not invalidate it.

Undue influence in the making of a will is extremely difficult to prove in court because a degree of coercion must be estab­lished, but, together with non­testamentary financial abuse of demented people, is a major problem nowadays. Judgement is often impaired in dementia, resulting in increased vulnerability to exploitation, and it has been estimated that very many suf­ferers are robbed of money and valuables by relatives, so­called friends and ordinary criminals. In cases where members of com­munity mental health teams suspect financial abuse, they should take action against it, if necessary via the police or the Court of Protection.

Legal tests for testamentary capacity

The testator should:

• know what the act of making a will means

• know the extent of their estate

• know who might have a claim on their bounty (both those

included and excluded from the will)

• have no mental disorder affecting the above, i.e. no ‘insane

delusions’ influencing their testamentary dispositions

• not be subject to ‘undue influence’

Table 2

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Advance directives (living wills): advance directives are state­ments by competent people as to how they should be treated if they become incompetent.2,5 There are three types (see Table 3); the only one currently valid in law, now statutorily under the new Mental Capacity Act, is the instruction directive in the form of an advance refusal of treatment, which tries to foresee a specific future situation. An example might be as follows: ‘if I become irreversibly mentally incompetent to make personal decisions, I no longer recognize my family, and am unable to attend to my basic nutrition and hygiene, I should not be given any treatment that is likely to prolong my life’.

There are several problems with instruction directives, not least of which is that future situations, with all that they imply, may not be adequately foreseen. For example, a person writes the above directive, becomes demented and fulfils its condi­tions, but develops a comorbid physical illness, the treatment of which might not prolong her life but reduce pain and suffer­ing, while withholding treatment would greatly increase them. Interestingly, when hospitals in Canada and the USA have tried to encourage patients to write advance directives, the take­up rate has been low.

A proxy directive (e.g. ‘if I become mentally incompetent, I leave all decisions to my spouse’) is not valid in law but a degree of proxy decision­making is now permitted under the new LPA. A values directive, in which a person makes a general statement of values and asks doctors to abide by it if she becomes incom­petent, is not valid in law, but it would be good practice for professionals to take it carefully into account if she does become mentally incapacitated. Presumably also, spouses or children who hold LPAs will consider the donor’s values when making proxy decisions.

End-of-life decisions

When a patient with end­stage dementia has not written an advance directive, decisions regarding treatment of life­ threatening illnesses – usually pneumonia – may present complex ethical problems for families and professionals. In theory, the law is clear on the treatment of persons lacking mental capacity to decide for themselves: the treatment has to be necessary either to save life or to prevent a serious deterioration in health, and must be in the patient’s best interests. Real life is, of course, more complicated than a simple statement of law suggests.5 Fre­quently, relatives will state that they believe that it would not be in the best interests of the patient to give active medical treat­ment and that she herself would not have wanted it – a sort

Types of advance directive

• Instruction directive – specific; usually advance refusal of

treatment; valid in law as an advance refusal of treatment

• Proxy directive – not valid in law, but proxy decision-making

permitted under lasting power of attorney (lPa)

• Values directive – not valid in law, but good practice dictates

it should be taken into account

Table 3

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General ManaGeMent of DeMentia

of verbal report of a values directive. In most such cases, the medical team will choose to go along with these wishes. On the other hand, diametrically opposite views may be expressed by relatives. In all cases, the team should sit with families or other interested parties, discuss the issues in as relaxed an atmosphere as possible and strive to achieve consensus, which happens in the great majority of cases.

Driving

Driving in dementia is too complex a matter to deal with satis­factorily in a short contribution such as this, and the reader is referred to Chapter 44 in the Oxford textbook of old age psychiatry.6 Only a few brief points can be made here. First, a doctor needs to remind a person with a diagnosis of dementia of his (the patient’s) legal obligation to inform the UK Driver and Vehicle Licensing Agency (DVLA) of his condition. Second, if a doctor has concerns that a patient who clearly should not be driving is doing so, it is a permissible breach of confidentiality to inform the DVLA. However, between these two points lies a broad terrain of clinical interaction that makes a doctor’s need to inform the DVLA a very rare one. To start with, a full assessment of cognitive and spatio­motor function has to be made. Discussion with the patient and his family can often lead to a voluntary retirement from driving, perhaps after a period of local driving only. If there is doubt about a patient’s fitness to drive, he may undergo a test at a special centre where he will be given a sympathetic opportunity to show what he can and cannot do. ◆

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REfEREncEs

1 fazel S. Competence. in: Jacoby r, oppenheimer C, Dening t,

thomas a, eds. the oxford textbook of old age psychiatry

(in press).

2 appelbaum PS, Grisso t. assessing patients’ capacities to consent

to treatment. N Engl J Med 1988; 319: 1635–8.

3 lush D. the legal framework in the British isles for making

decisions on behalf of mentally incapacitated people. in: Jacoby r,

oppenheimer C, Dening t, thomas a, eds. the oxford textbook of

old age psychiatry (in press).

4 Posener H, Jacoby r. testamentary capacity. in: Jacoby r,

oppenheimer C, Dening t, thomas a, eds. the oxford textbook of

old age psychiatry (in press).

5 Hughes JC, Baldwin C. ethics in old age psychiatry. in: Jacoby r,

oppenheimer C, Dening t, thomas a, eds. the oxford textbook of

old age psychiatry (in press).

6 o’neill D. Driving and psychiatric illness in later life. in: Jacoby r,

oppenheimer C, Dening t, thomas a, eds. the oxford textbook of

old age psychiatry (in press).

fuRThER READInG

British Medical association and the law Society. assessment of mental

capacity: guidance for doctors and lawyers, 2nd edn. london: BMJ

Books, 2004.

Driver Vehicle and licensing agency. www.dvla.gov.uk/at_a_glance/

what_is.htm

Hotopf M, raymont V. Mental capacity and valid consent. Psychiatry

2004; 3: 8–10.

© 2007 elsevier ltd. all rights reserved.