Advance decisions (living wills): is the position clarified?

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Advance decisions (sometimes referred to as ‘living wills’) are a way of making sure others, including doctors, know your wishes about your health and care.

There is a statutory power for any adult to set out, in written form, whether he or she wants to refuse consent to treatment, if they subsequently lose capacity. The role of the courts in these decisions, which involve seriously ill individuals, is growing ever more ambiguous.

There are two main opposing views at play where clinical and legal decision-making meet.

  1. Court involvement in a person’s decisions regarding their death affects the rights of the individual and adds unnecessary stress on those concerned.
  2. The court is protecting healthcare staff and families from making a difficult decision in the individual’s best interests.

A matter of life and death

Mr Justice Baker addressed these issues towards the end of 2016, in his Oxford Shrieval Lecture, "A matter of life and death".

He discussed:

  • Advanced decisions (living wills)
  • The meaning of “capacity”
  • The ethical principles underlying any decision
  • How we decide what should happen in such cases.

Advanced decisions

There is a statutory power for any adult to set out, in written form, whether he or she wants to refuse consent to treatment if they subsequently lose capacity.

In the case of life-sustaining treatment, the Mental Capacity Act 2005, ss.24-26, provide that an advance decision must be verified by a statement, to the effect that it is to apply to that treatment, even where life is at risk.

The decision and the statement must be:

  • In writing
  • Signed by the patient
  • With a witness present.

Practice Direction 9E

Despite the statutory framework being clear, Mr Justice Baker highlights that Practice Direction 9E of the Court of Protection Rules 2007 effectively ‘trumps’ any advance decision concerning serious medical treatment.

Section 5 of the practice direction confirms that matters that should be brought to court are:

  • Decisions about proposed withholding or withdrawal of artificial nutrition and hydration from a person in a permanent vegetative state, or minimally conscious state.
  • Cases involving organ or bone marrow donation by a person who lacks capacity to consent.
  • Cases involving non-therapeutic sterilisation of a patient who lacks capacity to consent.


However, this does not prevent a patient who has capacity from refusing treatment, such as the case of Nina Adamowicz (reported in The Times on 26.09.16: “Doctors switched pacemaker off to let woman die”).

Ms Adamowicz suffered from hereditary heart disease and was fitted with her first pacemaker in 1996. This worked well for a decade, however she then suffered from a heart attack and her health declined. She consequently asked the doctors to turn off her pacemaker.

The local hospital Trust’s ethics committee agreed to switch off her pacemaker after Ms Adamowicz underwent a series of medical examinations, which indicated she had capacity and had full understanding of her decision. She died in October 2015, the evening after the doctors turned off the pacemaker.

Arguably, turning off a pacemaker of a living patient, knowing that the patient will die, would fall under the definition of “serious medical treatment”.

However, there is an ongoing debate as to whether the court should have any interference in a capacious patient making a decision as to life or death. This strays into assisted dying, and the ethical decisions regarding this.

The role of the court

Mr Justice Baker affirms that all circumstances under s.5 must be brought before the court, even where all interested parties agree on the individual’s best interests. He highlights that, as a matter of course, it has been strongly argued that court proceedings should no longer be required.

The history of such court proceedings has regrettably demonstrated the chronic problems of all matters involving courts, namely delay and cost. These problems greatly exacerbate the strain and distress experienced by family members and carers.

It has been suggested that applications to the court should be confined to those cases where there is a dispute as to whether withdrawal of artificial nutrition and hydration would be in the patient’s best interests. There is certainly strength that, where all parties agree, arguably there is no need to revert to court. This should carry even more weight where the patient, when they had the requisite mental capacity, signed an advance decision to this effect.


Mr Justice Baker proposes a pre-proceedings protocol to simplify decisions where there are no disputes as to the withdrawal of artificial nutrition and hydration. This would spell out the obligations of each party to ensure all necessary steps are undertaken before the start of the case. He hopes this would reduce any court decision to a matter of weeks, rather than months or years, and lead to a significant reduction of delays.

He does however highlight that, until such time that there is greater understanding about the disorders of consciousness, and about the legal and ethical principles to be applied, there remains a need for independent court oversight. He maintains that an application to the court should continue to be obligatory where withdrawal of artificial nutrition or hydration is proposed.


In relation to healthcare providers, Practice Direction 9E will relieve pressures from the Trust, as the role of the court means that each and every case is evaluated to find the right decision.

With a patient’s best interests in question, court involvement seems the most responsible and integral precaution.

In this regard, at this stage, we would always advocate going to the Court of Protection should there be any doubt about a patient’s best interests or a conflict with family over the best interests of a patient.

However, we would encourage healthcare bodies to use the pre-proceedings protocol and Court of Protection Mediation pilot on less urgent cases in order to minimise the accrual of costs.
Read related items in Healthcare Brief - March 2017