Background

Mrs Rushton lived a long and happy life. In her youth she worked as a nurse, married a man who adored her, and together with her husband raised four sons. After her husband passed away, “the sweetness went out of her life”, and Mrs Rushton began to display the early signs of dementia. 

On 24 July 2014, Mrs Rushton signed an Advance Decision Refusing Treatment (ADRT) stating that “on collapse, I do not wish to be resuscitated by any means. I am refusing all treatment. Even if my life is at risk as a result…this direction is to be applied”. Mrs Rushton left her ADRT in the safe-keeping of her general practitioner.

On 21 December 2015, Mrs Rushton fell and suffered a major head trauma which was “so significant that she was not expected to survive”. She defied the doctors’ expectations and lived, although did not regain consciousness. The Hospital was informed of the existence of an ADRT and so telephoned Mrs Rushton’s GP to learn the detail: as recorded in the hospital notes, the GP said that “the only ADRT in place is in regards to do not resuscitate”. Accordingly, the medical staff inserted a percutaneous endoscopic gastronomy (PEG) tube so that Mrs Rushton could receive nutrition whilst she was discharged home, albeit in the expectation that she would soon die.

However, being well-cared for by her youngest son, she lived on for almost three years in a persistent vegetative state before the question of withdrawing treatment came before the court. The question for the court was whether continuing to provide clinically assisted nutrition and hydration (‘CANH’) would be in Mrs Rushton’s best interests particularly in light of her earlier ADRT.

The Court’s Decision

The starting point for the court was interpreting the ADRT. Per sections 24 - 26 of the Mental Capacity Act 2005 (‘MCA’), a capacitous adult may make an ADRT to refuse certain treatment if, at the time of treatment, they lack capacity. Where the treatment is life-sustaining, an ADRT will only take effect if it is written, signed, and contains a statement to the effect that the ADRT is to apply to life sustaining treatment. 

Hayden J reiterated the principles in interpreting an ADRT to refuse life-sustaining treatment. Paragraphs 9.25 - 9.28 MCA Code of Practice specifically consider CANH, and includes the following points:

  • Life-sustaining treatment is treatment which a healthcare professional who is providing care to the person regards as necessary to sustain life. This decision will depend on the circumstances and the type of treatment;
  • CANH is a form of medical treatment;
  • An ADRT can refuse CANH; and
  • Refusing CANH in an ADRT is likely to result in the person's death.

The insertion of the PEG was an essentially life-sustaining treatment in circumstances where there was little, if any, prospect of meaningful recovery. The hospital had understood that the only ADRT was to refuse resuscitation. Plainly, this was incorrect. Even though Mrs Rushton had not referred to ‘PEG’ in her ADRT, Hayden J was left with “little doubt, to my mind, that the insertion of the PEG was contrary to Mrs Rushton’s written decision.”

Hayden J took the opportunity to provide guidance on communicating ADRTs between medical practitioners, stressing that ADRTs are “documents of the utmost importance”. The MCA and the Code of Practice provide “essential safeguards” by enabling ADRTs to strike a balance between (i) proper respect and recognition to the autonomy of a competent adult and (ii) identifying the risk that a person might find themselves locked into an advance refusal, but from which they may wish to resile.

Accordingly Hayden J stated that, (emphasis added):

“… it should be regarded as axiomatic, that the medical profession must give these advanced decisions the utmost care, attention and scrutiny… I do not think sufficient care and scrutiny took place here. The lesson is an obvious one ... Where advanced decisions have been drawn up and placed with GP records there is an onerous burden on the GP to ensure, wherever possible, that they are made available to clinicians in hospital. By this I mean a copy of the decision should be made available and placed within the hospital records with the objective that the document should follow the patient. It need hardly be said that it will rarely, if ever, be sufficient to summarise an advance decision in a telephone conversation.

By the time this application reached court, it was clear that Mrs Rushton “had been gone for some time”. Hayden J had “no doubt that she would want to be let go” in accordance with her ADRT, and had “no hesitation” in concluding that it was the court’s responsibility to respect her wish. Accordingly, Hayden J endorsed the care plan which provided for the withdrawal of CANH, and Mrs Rushton passed a few weeks later.

Analysis

Unlike most people, Mrs Rushton had the foresight to express her wishes in advance of losing capacity. Unfortunately, it appears that the failure of medical professionals to adequately scrutinise her recorded wishes left her in the very situation she had sought to avoid. 

ADRTs have been enshrined in statute since 2007.  As this judgment indicates, medical practitioners and relatives should be made aware of the existence and location of the ADRT, so that the patient’s wishes can be respected at the outset.

Hayden J made it clear that medical professionals have an “onerous duty” to ensure that an ADRT of a patient, which is in their possession, is made available to the healthcare professionals proposing treatment.  As Hayden J stated “it will rarely, if ever, be sufficient to summarise an ADRT in a telephone conversation”: it is this author’s view that it will rarely be sufficient to summarise an ADRT at all. Hospital Clinicians should consider asking GPs as a matter of routine whether there is an ADRT, and if so, ensuring that the Hospital obtains and properly scrutinises a copy of the written document.