Advance decisions to refuse treatment (ADRTs), as the name suggests, allows an adult with capacity to set out the treatment they would wish to refuse at some future point when they lack capacity to make the decision themselves (Mental Capacity Act 2005, section 24). This includes life-sustaining treatment that would lead to a person's death if withheld or withdrawn.
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). That care and treatment protection is lost if the nurse knew, or ought reasonably to have known, of the existence of a valid and applicable advance decision but did not put it into effect (Mental Capacity Act 2005, section 6).
In NHS Cumbria CCG v Rushton [2018] an NHS clinical commissioning group applied for the court's approval to withdraw clinically assisted nutrition and hydration in respect of an 85-year-old woman who had signed an advance decision, in which she indicated her refusal of certain treatment even if her life was at risk.
After sustaining a traumatic head injury in a fall she was not expected to survive and was put on a palliative care plan. A nasogastric tube was inserted to feed her, and that was later replaced by a percutaneous endoscopic gastrostomy (PEG). The medical consensus was that she was in a persistent vegetative state with little hope of recovery. About a month after the fall, the existence of her advance decision and the identity of her GP came to light.
The Court of Protection held that advance decisions were important documents and had to be approached with care. The woman's advance decision complied with the requirements of the Mental Capacity Act 2005 and was valid and applicable to her circumstances. As recommended, she had sent a copy to her GP to keep on file. The initial insertion of the nasogastric tube was arguably incompatible with her wishes, and the insertion of the PEG was also incompatible. It appeared that the advance decision had not been available at the hospital when those decisions were made. When the GP relayed its contents to the hospital over the telephone it was incorrectly interpreted.
The Court of Protection stressed that nurses and doctors had to give advance decisions the utmost care, attention and scrutiny, and this had not happened in this case. The court further held that, where advance decisions were placed with GP records, there was an onerous burden on the GP practice to ensure that they were made available to hospital clinicians. That meant a copy of the decision should be made available and placed in the hospital records with the objective that it should follow the patient. It would rarely, if ever, be sufficient to summarise an advance decision in a telephone conversation.
The case highlights the importance of advance decisions and the duty on nurses to give effect to the advance decision where it is valid and applicable.
Definition of an ADRT
The Law Commission (1995) defined an ADRT 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 an advance decision they must be satisfied that it exists, is valid and is valid to the current circumstances (Mental Capacity Act 2005, section 25(1)).
Existence of an advance decision
The Code of Practice to the Mental Capacity Act 2005 (Department for Constitutional Affairs, 2007 at para 9.38) suggests that it is the responsibility of the person who makes an advance decision to ensure that it is drawn to the attention of nurses and other health professionals when needed. The person may wear a bracelet or carry a card stating the existence of an advance decision and where it can be found. The code of practice (2007) to the 2005 Act recommends that a copy of the advance decision is left with the person's GP and relatives and this was done by the woman in NHS Cumbria CCG v Rushton [2018].
Unlike lasting powers of attorney and court deputyships, there is no central register of ADRTs. It is essential that nurses are aware that an advance decision may be in existence for a patient. If made aware of the existence of an ADRT, nurses should make reasonable efforts to find out the detail of the document to establish its validity and applicability. This might include discussing the issue with the patient's relatives and GP and making a search of the patient's records.
Records should have a separate section where legal documents such as ADRTs, do not attempt CPR notices, Lasting Powers of Attorney or court deputyships can be stored securely and retrieved in a timely manner.
Validity of an advance decision
To be a valid advance decision the patient must have been a capable adult at the time of making the directive. A nurse suddenly faced with an advance decision, which may have been created several years previously, might wonder how they are supposed to know whether the person had been capable at the time of making the advance decision. The Mental Capacity Act 2005, section 1, makes it clear 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.
Advance decisions to refuse treatment are informal instruments. They do not have to be made out on official forms and do not have to be scrutinised by a solicitor, court or public guardian to have effect. Advance decisions do not have to be in writing. A person can refuse treatment in advance orally. To be of value, however, a nurse who is informed verbally by a patient that they never wish to have a certain treatment will need to write down the advance decision so that it can be identified in the future.
The decision should be recorded in order that it can be identified should the patient become incapable at some point in the future. The record should include:
(Department for Constitutional Affairs, 2007 at chapter 9).
Limitations of an ADRT
Certain decision cannot be enforced through an advance decision. The Code of Practice to the Mental Capacity Act 2005 makes it clear that an ADRT cannot be used to:
An advance decision would be invalid if the person making it:
Applicability of an ADRT
To be an applicable advance decision, the treatment and conditions expressed by the patient must have come into effect and the patient must be incapable of making the decision to accept or refuse treatment themselves (Mental Capacity Act 2005, section 25).
To safeguard the patient the Mental Capacity Act 2005 imposes specific formalities that have to be complied with if an advance decision is to be applicable to the refusal of life-sustaining treatment. Life-sustaining treatment is defined as treatment that a person providing health care regards as necessary to sustain life, such as the provision of artificial nutrition and hydration via a nasogastric or PEG tube (Mental Capacity Act 2005, section 4(10)). The type of treatment and the circumstances to which it applies are relevant when determining whether a treatment is life sustaining.
Where a person wishes to make an advance decision refusing life-sustaining treatment then the 2005 Act (section 25) requires that the advance decision is:
The person does not have to make the written statement themselves. They could, for example, make the decision and statement of applicability even if life is at risk orally to a nurse who would write the person's advance decision and statement in their nursing record and sign it on their behalf. This entry would then be witnessed by a third party in the presence of the person and the nurse for it to have effect. Where an advance decision does not meet these requirements, a nurse is entitled to give treatment to sustain life.
An NHS trust paid a woman's family some £45 000 in an out-of-court settlement after admitting that they had mislaid her ADRT in a large pile of medical records. This resulted in the woman receiving treatment against her wishes for a further 2 years until the error was corrected (Lay, 2017).
Conclusion
The Mental Capacity Act 2005 allows an adult to refuse medical treatment, including life-sustaining treatment, when they are incapable by using an ADRT. The Court of Protection in NHS Cumbria CCG v Rushton [2018] has stressed that nurses must give advance decisions the utmost care, attention and scrutiny and carefully record its contents so that a proper decision on the ADRT's validity and applicability can be made to ensure that the wishes of the patient are respected.