The main aim of the Mental Capacity Act 2005 is to promote valid choice by putting the person at the centre of decision-making and giving effect to that person's wishes (Department for Constitutional Affairs, 2007).
Advance decisions to refuse treatment allow an adult with capacity to set out the treatment they would wish to refuse at some future point when they lacked capacity to make the decision themselves (Mental Capacity Act 2005, section 24). Nurses are protected from liability if they stop or withhold treatment because they reasonably believe a valid and applicable advance decision exists (Mental Capacity Act 2005, section 5).
Advanced decisions to refuse treatment
The Law Commission (1995) defined an advance decision refusing treatment as:
‘A refusal made by a person aged 18 or over with the necessary capacity of any medical, surgical or dental treatment or other procedure and intended to have effect at any subsequent time when he or she may be without capacity to give or refuse consent.’
Three key elements emerge from this definition, and before a nurse can apply and advance decision they must be satisfied that it:
- Exists
- Is valid, and
- Is applicable to the current circumstances. (Mental Capacity Act 2005, section 25(1)).
Validity of an advanced decision
To be a valid advanced decision the patient must have been a capable adult at the time of making it. A nurse, faced with an advance decision that may have been created several years previously, might wonder how they are supposed to know if the person was capable at the time of making the advance decision. The Mental Capacity Act 2005, section 1, makes it clear to nurses that a person is to be assumed to have capacity unless it can be shown otherwise. Nurses must therefore assume that an adult was capable of making the advance decision to refuse treatment unless they have evidence to the contrary.
An advanced decision would be invalid if the person making it:
- Withdraws the decision while still having the capacity to do so
- Gives the authority to make the decisions included in the advance decision to a third party through a lasting power of attorney (LPA), or
- Has done something that is clearly inconsistent with the advanced decision remaining their fixed position. (Mental Capacity Act 2005, section 25(2)).
In HE v A Hospital NHS Trust [2003] the High Court held that a long-standing living to refuse blood products made by a woman of the Jehovah's Witness faith was no longer valid and could be revoked. In this case the patient, who had a congenital heart problem, fell seriously ill and was very likely to die without a blood transfusion. Her mother argued the treatment should not be given as the advance decision was still in force. Her father argued that it no longer applied as she was now engaged to a Muslim man, had expressed a commitment to return to the Muslim faith and had ceased to worship as a Jehovah's Witness for some months before her illness, thereby implicitly revoking the directive. The High Court ordered that blood could be given as the patient's decision to change faith and marry a Muslim man had been a deliberate, implemented decision that was sufficient to effectively revoke and invalidate the advance decision.
Advance decisions and lasting powers of attorney
An LPA for health and care allows an adult with capacity (the donor) to grant powers to one or more people they trust to make decisions relating to health and care including consent to treatment. The person can also give authority to their attorney to consent or refuse life-sustaining treatment on behalf of the donor.
A person can have both an advance decision refusing treatment and a power of attorney for health and care in place. It is generally the advance decision that takes precedence in such cases as it is the person's own expressed wish, and the Mental Capacity Act 2005, section 25(2), states that the advance decision would be overridden by an attorney only if the person:
‘Has, under a lasting power of attorney created after the advance decision was made, conferred authority on the donee (or, if more than one, any of them) to give or refuse consent to the treatment to which the advance decision relates.’
The LPA only overrides an advance decision if the donor explicitly allows this in the LPA. This provision would appear to suggest that if no mention of the advance decision is made in the LPA then the wishes expressed in the advance decision prevail.
However, this would not now seem to be the case as the Court of Protection has recently held that, even where specific authority has not been given in the LPA, the validity of an advance decision to refuse treatment might still be questioned if it were the case that no mention at all was made in relation to the advance decision when making the LPA, on the grounds that this failure shows the person has acted inconsistently with the advance decision remaining their fixed decision (section 25(2)(c) of the 2005 Act).
In University Hospitals Birmingham NHSFT v PW [2021] the Court of Protection considered the validity of an advance decision to refuse treatment of an 80-year-old woman, who professed to be of the Jehovah's Witness faith, but was in need of a blood transfusion for anaemia caused by a bleeding gastric ulcer.
The woman had a long-standing advance decision that was properly made and refused blood. In 2020, she made an LPA appointing her four children to make decisions about her health and welfare. No specific instructions were made about treatment with blood transfusion or anything else, but she elected not to give her attorneys authority to give or refuse consent to life-sustaining treatment on her behalf. When her capacity to make decisions about her medical treatment was being assessed in hospital by a consultant geriatrician, the woman expressed her agreement to have a blood transfusion. However, 30 minutes later she withdrew her consent. In a written statement, the consultant concluded that the woman was not capable of deciding whether to accept or refuse transfusion. Her children gave evidence that, when in hospital earlier in the year, their mother had given clear wishes to be resuscitated if the need arose and had insisted that a do not attempt resuscitation (DNAR) order that had been mistakenly included in her medical notes be removed.
The court was satisfied that the woman lacked capacity to decide to refuse or consent to blood transfusion and held that an advance decision was not valid if the patient had ‘done’ anything else, other than withdrawal or granting an LPA that displaced it, ‘clearly’ inconsistent with the advance decision remaining their ‘fixed’ decision. The Court considered the meaning of the key terms to be as follows:
- Done: while the statutory provision did not refer to words and actions, the word was read to include both words and actions.
- Clearly: something said or done that could arguably be, or might be, inconsistent would not suffice
- Fixed: fluctuating adherence to the advance decision could well be inconsistent with it remaining the patient's fixed decision.
The Court found, on balance, that the woman had done things that were clearly inconsistent with the advance decision remaining her fixed decision. She had granted to her children, who were hostile to her religious denomination, authority to make decisions about all medical treatment, other than life-sustaining treatment, on her behalf should she lose capacity. In doing so, she did not mention to them or include in the written LPA any preference or requirement not to receive blood transfusion or blood products. The advance decision was widely drawn and did not restrict the refusal of consent to blood transfusion or blood products by way of life-sustaining treatment. Her actions at the time of granting the LPA were, in the view of the court, clearly inconsistent with the advance decision remaining her fixed decision. Similarly, her actions on requesting the removal of the DNAR notice, without qualification and without telling her children or her clinicians about the advance decision or that she would refuse a blood transfusion or blood products, was also inconsistent with the advance decision remaining her fixed decision.
The ambivalence demonstrated when she stated that she wished to have a transfusion of blood free from diseases if she might die without it, while later expressed wishes and feelings that were consistent with the advance decision, also showed the advance decision was not a fixed decision and so was not valid.
The case raises a number of practice concerns when an advance decision to refuse treatment sits alongside an LPA for health and care. LPAs are negatively framed, that is, the donor does not stipulate the treatment they wish their attorneys to consent to. Instead, it grants to the attorneys all the powers needed to make decisions concerning the person's health and care when the donor lacks capacity to make the decision themselves. It is for the donor to restrict that power for specific decisions in the LPA. In relation to advance decisions, section 25 of the 2005 Act does not allow an LPA to override the advance decision unless this is specifically authorised by the LPA. Donors would not necessarily consider that they needed to mention the advance decision in the LPA if they had no intention of overriding its requirement. However, in Re PW it is clear that this approach was fatal to the validity of the LPA in the view of the Court of Protection, and the relationship between the advance decision and the LPA now needs to be clearly stated.
Conclusion
The Mental Capacity Act 2005 allows an adult to refuse medical treatment, including life-sustaining treatment when they are incapable, by using an advanced decision to refuse treatment. The creation of a later LPA for health and care does not invalidate the advance decision, but a failure to mention the advance decision and make clear its relationship with the LPA has been shown that the advance decision can be invalid because the maker is held to have done something clearly inconsistent with the advance decision remaining their fixed decision.
KEY POINTS
- An advance decision to refuse treatment carries the legal force of the Mental Capacity Act 2005 and, where valid and applicable, a nurse must give effect to the wishes expressed by the patient
- An advance decision will not be valid if the maker has done something clearly inconsistent with the advance decision remaining their fixed decision
- This includes failing to mention and take account of their advance decision when making a lasting power of attorney for health and care