Critical evaluation of advance statements from patients lacking mental capacity

Advance directives at common law

In a series of cases, the English courts have recognised the legal effect at common law of advance statements. In the case of validity of an advance refusal of life-saving treatment, the courts will resolve that doubt ‘in favour of the preservation of life’ (Re T (adult: refusal of treatment) [1992]. T was injured in a car accident when she was 34 weeks pregnant, and the question of a blood transfusion arose. T refused the possibility of blood transfusion because of an upbringing as a Jehovah's Witness and blindly signed a form of refusal to blood transfusion. She subsequently needed a transfusion following a caesarian section. Following an emergency hearing the judge authorised the administration of blood, and declared that in the circumstances prevailing, despite the absence of her consent, a blood transfusion to T was in her best interests. At a second hearing the judge held that T had neither consented to nor refused a blood transfusion in the emergency which had arisen and accordingly that it was lawful for the doctors to treat her in whatever way they considered.

Any doubt that the law would not recognise the binding effect of a validly made advance refusal was dispelled in Re C (adult: refusal of medical treatment) [1994]. C was a 68-year-old paranoid schizophrenic, who had gangrene in his foot. The surgeon stated he required an amputation, with a 15% chance of survival with amputation. C refused the amputation and optioned for conservative treatment, despite there being a danger that his condition would deteriorate and he would need an amputation in the future. C's solicitor sought and was granted, a declaration that no amputation should take place without C's written consent.

Although C was mentally ill and suffering from delusions, and the decision had serious adverse consequences, he was still judged capable of decision-making. This means that however mentally ill a patient might be, and however unwise the decision they take might be, they still benefit from the assumption that they are able to take decisions about their own medical treatment and doctors must prove otherwise. The case of Re C demonstrates that mental illness and mental incapacity are not identical.

Thorpe J stated: ‘I consider helpful Dr E's analysis of the decision-making process into three stages. First, comprehending and retaining treatment information. Secondly, believing and thirdly, weighing it in the balance to arrive at a choice… Applying that test to my findings on the evidence, I am completely satisfied that the presumption that Mr C has the right of self-determination has not been displaced.’

The test Thorpe J applied has come to be known as the Re C test. It was later confirmed by the Court of Appeal in the Re MB [1997] 1 FCR 274 and has formed the basis of the statutory test for incapacity in the Mental Capacity Act 2005.

It is sometimes difficult to draw the line between a person's unusual or irrational wishes, which as we can see should be respected. In NHS Trust v T (adult patient: refusal of medical treatment) Ms T had attempted to execute an advance directive refusing the blood transfusions she needed regularly because of her tendency to self-harm through blood-letting. Her advance directive refused blood transfusions. Charles J emphasised that making a bizarre or irrational decision was not sufficient for a finding of incapacity, but nevertheless found that her belief that blood was evil amounted to a disorder of the mind.

In Airedale NHS Trust v Bland [1993], a 17-year-old man (Bland) was seriously injured in the Hillsborough disaster. As a result, he sustained irreversible damage to the brain, which had left him since 1989 in a persistent vegetative state. Medical opinion agreed that there was no hope for improvement. Mr Bland's family and independent physicians sought declarations to lawfully discontinue life-sustaining treatment. The trial judge granted the declarations and his decision was upheld by the Court of Appeal. The Official Solicitor appealed to the House of Lords. The House of Lords unanimously rejected the Official Solicitor's appeal and confirmed that Airedale NHS Trust was entitled to the declarations sought.

In Burke v General Medical Council [2004], the claimant had a progressive degenerative neurological disorder, with the natural history of the disease inevitably resulting in loss of capacity and the ability to communicate. He expressed that he wanted to be fed and hydrated until death occurred by natural causes, and he did not want doctors to take a decision on his behalf that his life was not worth living at a time when he was no longer considered legally competent. He argued that the General Medical Council (GMC) guidance on good practice in decision-making with regard to the withholding and withdrawal of life-prolonging treatment. Withholding and withdrawing life-prolonging treatments: good practice and decision-making) was, in parts, incompatible with his rights under the Human Rights Act 1998.

In deliberation the House of Lords concluded that an advance statement refusing life-supporting treatment in the case of a persistent vegetative state (PVS) should be respected. The Court of Appeal's inference from Bland was that it did not therefore follow that the converse decision should necessarily hold true. In other words, the decision in Bland did not require a patient to be kept alive because he might have made an advance directive to that effect. Therefore an advance directive requiring life-prolonging treatment would not be binding as an advance refusal. Furthermore, the Court of Appeal considered that the proposition of an advance requirement for life-prolonging treatment would not be compatible with the provisions of the Mental Capacity Act 2005. While section 26 of the Act will require compliance with a valid advance directive to refuse treatment, section 4 does no more than require that such a directive be taken into consideration in the determination of best interests of the incompetent patient. However, this point has as yet not been tested in court. In Burke, a written advance directive to the effect of requiring life-prolonging treatment was never actually made by the claimant. What the Court of Appeal has stressed is that any doctor who intentionally brings a competent patient's life to an end by discontinuing the supply of artificial nutrition and hydration (ANH) when the patient indicates his or her wish to be kept alive through the provision of ANH, would not only be in breach of duty of care, but would also be guilty of murder.

Mental Capacity Act 2005—advance directives

Sections 24 and 25 of the Mental Capacity Act 2005 deal with advance directives. Advanced directives are defined under the Act as:

Section 24(1) specifies advanced decisions must have been made when an adult is competent and which treatment should not be carried out or continued when the person (P) lacks capacity. Section 24 only deals with refusals of treatment. An advance directive may not be confined to a refusal of medical treatment. Occasionally, a patient might insist certain treatments be made available to them. Patients do not normally have the right to insist upon any particular course of treatment. This is equally true when the request is made in advance.

The person who has issued the advance refusal must specifically acknowledge that they intend to refuse treatment even if this puts their life at risk. The decision must be in writing and signed by P or a representative in P's presence and the signature must be witnessed. This is more rigorous than common law, under which there is no requirement for an advance refusal to be in writing, regardless of the seriousness of its consequences.

P can refuse treatment even when it is described in layman terms under section 24(2). For the majority of advance decisions, with the exception of life-saving treatments, there is no requirement for them to be in writing, so an oral refusal of non-life-sustaining treatment must be complied with. A person can withdraw or alter their advance decision at any time when he has capacity to do so under section 24(3) and under 24(4) and (5), withdrawal and alterations do not have to be in writing.

Section 25(1) states that to be effective, an advance decision must be both valid and applicable to the treatment. Once deemed valid and applicable to the treatment then under section 26(1) ‘the decision has effect as if he had made it and had capacity to make it, at the time when the question arises whether the treatment should be carried out or continued.’

Section 25(2) defines when a decision will not be valid:

Thus, for an advanced decision to be valid there must be no evidence that P has either withdrawn the decision or conferred authority in relation to the relevant treatment on a donee via a lasting power of attorney.

Also an advance decision is not valid if P has acted in a way which is ‘clearly inconsistent’ with the decision. The Act here does not specify whether the actions which serve to invalidate the advance directive under section 25(2)(c) must have occurred while P was still competent, or whether the now incompetent P's conduct could also invalidate their advance decision. This leads to confusion since failure to specify when the ‘clearly inconsistent’ actions should take place would seem to lead to the conclusion that any inconsistent conduct will invalidate the decision, regardless of when it takes place. Nevertheless, section 24(3) details that P may withdraw or alter an advance decision only ‘when he has capacity to do so’, it might seem odd that an incompetent person is entitled to invalidate their decision indirectly by acting inconsistently with it.

Section 25(3) deals with when advanced directives are deemed not applicable:

An advance directive is not valid if the person who implemented it regains capacity or the advance directive does not precisely cover the situation in which P is now in.

Section 25(4)(c) may apply when, for example, a person with dementia appears happy and content and does not want to die, even though having previously issued an otherwise binding advance directive refusing life-sustaining treatment. It would be difficult to know whether the fact that he is cheerful despite his dementia would have affected his decision. If one was to interpret section 25(4)(c) this way, the possibilities are potentially extremely broad, since it would almost always be possible to argue that P issued their advance decision in a state of unawareness about what it would actually be like to be incapacitated.

When there is uncertainty about the validity and applicability of an advance decision, under section 26(4) an application can be made to the court for a declaration. While the court's advice is being sought, under section 26(5) nothing in the advance decision should prevent the provision of life-sustaining treatment or steps to prevent deterioration in the patient's condition.

Lasting power of attorney (LPA)

One of the principle changes the Mental Capacity Act 2005 makes to common law is introducing the possibility of proxy medical decisions for incapacitated adults. This involves a person nominating one or more people with lasting power of attorney (LPA). LPA should lead to better practices regarding participation of persons close to the patient. This might be particularly helpful when the patient is visited regularly by a number of different people—for example, partners, parents, relatives or friends who do not communicate between themselves and who may also have different views about what the patient would have decided.

However, changes in the relationship between a patient and those close to him or her could be a problem where that person was named as a proxy.

Advantages of advance directives

The liberal ideal of self-determination is a well-established principle of English law and as a result the principle justification for conforming to an advance refusal is respect for patient autonomy. Capron, for example, suggests that ‘Advance directives embody … [a] commitment to the principle of individual autonomy’ (Capron, 1998). Permitting patients to exercise control over their future medical treatment considerably widens the scope of patient self-determination, because autonomy ceases to be the preserve of competent adults.

In addition to autonomy, Buchanan comments on two other motives for valuing advance directives (Buchanan, 1998). The first lies in their potential to offer protection ‘from unwanted, virtually futile medical interventions that at best may prolong a miserable or meaningless existence’. Secondly, Buchanan states that advance directives allow its author to act altruistically and ‘do good to others’. While both of these proposals may provide good reason to value an advance directive, neither justifies the authority of an advance directive independently of autonomy.

Advance statements, in addition, give a paramedic a helpful indication of the views of patients whom he or she has not previously seen before. For example, when a patient becomes suddenly ill and has to be brought to a hospital at which he or she has never previously been treated. Advance statements can in the same respect be beneficial to relatives, where an advance directive can relieve the burden of making difficult decisions from those closest to the patient. If the patient has written down his wishes about life-sustaining care such a person would no longer feel obliged to take a decision regarding matters which they may not have discussed with the patient.

Advance statement may well encourage patients to start to think about making end of life decisions and whether they have any particular feelings about life sustaining treatments.

Advance statement may be of importance in research. Some commentators have proposed ‘research directives’ which would authorise the performance of certain specified types of research following incompetence (Moorhouse et al, 1996). Advance directives might also be used to authorise organ donation.

Disadvantages of advances directives

Although the key principled basis for recognising the validity of advance statements is respect for a patients autonomy, Elliot argues that these statements might not always be valid (Elliot, 1993) as people change their minds.

Another potential concern is deciding when a patient is terminally ill, so as to trigger implementation of the wishes written down in an advance statement.

Within the National Health Service, medical staff often have insufficient time to discuss a patient's current prognosis, so consultation about hypothetical future scenarios and therefore advance statements will rarely be feasible (Jackson, 2006).

Even where a patient has attempted to specify in advance that they wish to refuse life-prolonging treatment, two issues arise. Firstly, the conditions which must be satisfied for an advance refusal to be valid in practice create significant difficulties to their effectiveness.

Secondly, the result of relying upon an advance refusal of life-sustaining treatment will be the patient's death. If there is any doubt about its validity, paramedics will tend to err on the side of caution and administer life-saving support despite an apparent advance refusal of such treatment. Paramedics do have legal reasoning for proceeding in this manner. For example, if a competent Jehovah's Witness has an advance directive of a refusal of a life-saving blood transfusion, but does have a change of heart prior to becoming incompetent, a doctor who withholds life-support will be failing to act in a situation in which she has a duty to act positively to save life. The patient will be dead and the doctor's conduct will satisfy the actus reus and mens rea for murder. However, if a doctor ignores a refusal that turns out to have been valid, they will have committed to the tort of battery. Doctors are, therefore, confronted with a dilemma, of the crime of murder or the tort of battery. The latter choice is the obvious one.

Disadvantages—validity of advance statements

Doubts over the validity of advance directives occur for six key reasons. Firstly, because the patient is now incompetent, it will be very difficult to prove that she was competent when she issued the advance directive. Of course, all patients benefit from the presumption of competence so it would be for medical staff to establish that this patient had in fact been incompetent at the time of her advance refusal. However, for the reasons explained above, if there is any doubt about a patient's earlier competence, medical staff have good reasons to err on the side of caution and ignore the refusal.

Secondly, to be binding the advance refusal must apply to the particular situation that has arisen. In practice, however, it is very uncommon for patients to construct an advance directive which are precise enough to be legally binding.

It is much more common for people to express a general desire not to be kept alive if they become a ‘vegetable’. It is almost impossible to predict every medical eventuality making an advance directive and any lack of fit between the advance refusal and the patient's present circumstances will lead to doubt about its validity and doctors will therefore feel justified in disregarding it. For example, in the case of a Jehovah Witness, who says ‘I refuse blood transfusions’, it is a different statement to say: ‘I refuse life-saving blood transfusions’.

In common law, W Healthcare NHS Trust v H [2004] case also supports this. H suffered from multiple sclerosis and had been incapable of making informed decisions for 20 years and no longer recognised her closest family. There was considerable evidence from H's friends and family that she had said repeatedly that if the time came when she could no longer recognise her children she did not want to be kept alive. The family appealed against a High Court decision to reinsertion of a feeding tube to keep her alive, as the feeding tube had fallen out and her family did not want it to be reinserted. The High Court heard from K's family and friends that she now wanted to be allowed to die. The judge concluded that K was not capable of making decisions and that none of her earlier statements amounted to a direction that she would prefer to starve to death than be kept alive. He concluded since K's life would not be intolerable, that it was in her best interests to allow the tube to be reinserted.

Here, the Court of Appeal found that this advance directive was insufficiently precise to qualify as legally binding. Brook stated:

Thirdly, there is also an argument that it is never possible for an advanced directive to have been sufficiently well informed because, by definition, the competent adult does not know what it is like to be incompetent. For example, if a person decides that he did not want to continue life if he became severely demented, he would be making an assumption with no real understanding of what is like to be incompetent. It may be that once a previously competent person becomes demented, he might appear joyful and gain delight from his existence.

Fourthly, a patient's prognosis may have changed since she issued her advance refusal. New treatment options might have become available and doctors may feel unsure whether the patient would have refused life-sustaining treatment if she had known about them.

Fifthly, even if the patient precisely foresaw the events that have led to their current predicament, there is always the possibility that the patient may have changed their mind about refusing life-sustaining treatment. It is certainly not uncommon for severe life-threatening illness to alter a person's attitudes or priorities. If the patient did have a change of mind before the onset of incapacity, the refusal is no longer valid. Thus there remains a small risk that the advance directive no longer represents the patient's wishes in any refusal of life-sustaining treatments.

In HE v a Hospital NHS Trust [2003], the uncertainty of an advance directive arose. The patient, whose condition was now life threatening, had executed an advance directive refusing blood products when she was previously a Jehovah's Witness. She had since abandoned her religion in order to marry her Muslim fiancé. Furthermore, she had not mentioned the advance directive to the medical staff involved in her care and she had told relatives that she did not want to die. Munby held that the advance directive: ‘cannot have survived her deliberate, implemented, decision to abandon that faith and to revert to being a Muslim’. Munby implies in this case that the burden of proof of capacity is reversed when the patient has issued an advance directive and that such patients no longer benefit from the assumption of competence that applies when patients make decisions. Here the courts are showing that if there are any doubts over an advance directive, English courts will resolve in the preservation of life, unless there is convincing and reliable evidence.

Advance directives are not always invalid, as in the following case. In Re AK (adult patient) (medical treatment: consent) [2001], a 19-year-old patient who suffered from motor neurone disease, sought a declaration that it would be lawful to discontinue, two weeks from the date that he lost the ability to communicate, the artificial ventilation and the artificial nutrition and hydration which was being provided to him. AK was able to communicate solely by the movement of one eyelid but this movement would shortly cease. He communicated his wish by this means to have the ventilator removed and he was aware that such action would lead to his death.

Hughes held that: ‘In the present case the expressions of AK's decision are recent and are made not on any hypothetical basis but in the fullest possible knowledge of impending reality.

I am satisfied that they genuinely represent his considered wishes and should be treated as such…Given that his express wishes are clear, the conclusion follows from what I have said, that once the conditions which he stipulated arise it will be unlawful to continue invasive ventilation.’

This case shows the clear acceptance by the courts of the validity of an anticipatory refusal.

Finally, the philosophical objection to advance refusals has been expressed clearly by Dresser and Buchanan. In summary, they argue that profound incapacity may sever the ‘psychological continuity’ between the competent individual who issued the advance directive and the incompetent person who now requires life support. Dresser (1986) stated:

Buchanan (1988) stated, similarly, in regard to the advance directive: ‘Presumably a point is eventually reached at which the degree of psychological continuity between the author of the advance directive and the incompetent individual is so small that the advance directive of the former has no authority at all over the latter.’

This suggestion is controversial as it states that the incompetent adult may be so far removed from their previously competent self, that they should not be bound by the latter advance directive. It has been argued, however, that advance directives convey values which we should continue to respect because the now incompetent patient is not just a collection of current interests, but is rather a person with a past (Dworkin, 1986). Similarly Rhoden (1988), made a case that the ‘notion that a person is one person and one person only, from birth through old age, despite whatever changes and vicissitudes she might undergo’.

Conclusions

Advance statements present complex dilemmas with ethical, moral and legal facets. A competent patient may refuse any treatment, even where the decision may lead to an untimely death. The same holds true with respect to an incompetent patient with an advance directive made when that patient was competent and there is no reason to believe that the patient has changed his or her mind.

Advance statements arise from respect of patient autonomy and the introduction of The Mental Capacity Act 2005, which aims to provide consistently better protection and greater empowerment for vulnerable people and their autonomous rights.

The patient's right to choose in advance how they are to be treated if not competent to make their own treatment decisions is a positive development in the law. However, this may be of limited effect, as the majority of people will probably never make an advance statement. Therefore we should educate both patients and doctors about their rights in relation to medical decision-making, particularly as our increasing ability to prolong life makes decisions to terminate life-sustaining treatment more common. In England, an education campaign to accompany the legislation recently introduced may be necessary to highlight patient involvement in decisions regarding their future medical treatment.

Although the Mental Capacity Act 2005 has recently been come into force, one can only presume that problems with creating a legally binding directive at common law will be similar to those under this new Act. In order to respect patient autonomy, avoid harm to patients and reduce the risk to doctors of civil or criminal liability, physicians need to determine the legal validity of advance directives before making their treatment decision. In cases of uncertainty treatment decisions should be made in the patient's best interests while legal advice is sought as to the validity of the directive.

Key Points