Mental capacity: best interests decisions on withdrawal of life-sustaining treatment

The case involved PC, a 35-year-old woman who tragically suffered a cardiorespiratory arrest when she was 31 years old, leading to her brain being deprived of oxygen and causing a severe hypoxic ischaemic injury. As a result, PC was assessed to be in a Minimally Conscious State minus (MCS) and therefore lacked capacity to conduct proceedings and make decisions about her treatment.

The applicant Integrated Care Board (ICB) responsible for commissioning PC’s placement at the Royal Hospital for Neuro-Disability sought an order that it would be in PC’s best interests, and not unlawful, to refuse consent to the continuation of clinically assisted nutrition and hydration (CANH), and to consent to palliative care only.

PC is originally from Turkey and her mother doesn't speak English well but had expressed her opposition to the order sought on grounds that she didn't believe there had been sufficient assessment of PC for a final determination to be made regarding CANH.

Best interests decisions

Pursuant to section 1(5) Mental Capacity Act 2005 (MCA 2005), where a person lacks capacity, there's an obligation for any act done or decision made on their behalf to be done so in their best interests.

Guidance on making best interests decisions can be found under section 4 MCA 2005, known as the statutory best interests “checklist”.  

Determining an individual’s best interests

The court had to consider whether cessation of CANH was in PC’s best interests, considering the statutory checklist.

The presiding judge, Mr Justice Cusworth, consulted previous Court decisions relating to best interests. This included Baroness Hale’s judgment in Aintree v James [2013] UKSC 67 in which she stated: “…the starting point is a strong presumption that it is in a person’s best interests to stay alive… this is not an absolute…” and that matters must be considered from a patient’s point of view. The question is whether PC would regard her future life as worthwhile, taking into account her individual perspective, values and beliefs.

Further, the Court consulted chapter 5 of the MCA 2004 Code of Practice which includes guidance surrounding how to determine a person’s best interests when making decisions about life-sustaining treatment. The views of those caring for PC, or concerned for her welfare, were also considered.

When considering the investigative process undertaken to reach a best interests decision, the Court referred to Peter Jackson LJ’s judgment in Re M (Incapacitated Person: Withdrawal of Treatment) [2017] EWCOP 19, that “there are always more investigations that can be made, questions that can be asked, stones that can be turned…” but concluded in this case, the Court had all the essential information and that “…further inquiries would not alter the fundamentals…”

Considering the decision in W v. M [2011] EWHC 2443 where Jonathan Baker J decided that preservation of life prevailed on the facts, Mr Justice Cusworth cautioned the application of an overly simplistic balance sheet approach when determining best interests. The Court emphasised a detailed holistic approach is required in circumstances surrounding withdrawal of treatment.

The evidence

The judge considered evidence from several of PC’s treating care staff, including clinicians specialising in rehabilitation, in addition to members of PC’s family.

The medical evidence presented to the Court described PC as being unaware of herself or her environment, a distinct lack of perceived positive emotion, an array of behaviours associated with pain and a summary of PC’s likelihood of improvement being “non-existent”.

Evidence provided by Professor Wade, a Consultant in Neurological Rehabilitation, suggested that “the most important change in her condition is the emergence of more pain behaviours”.

Evidence provided by the family, including a witness statement from PC’s mother, disputed their alleged previous agreement to withdrawal of CANH in 2023 following a best interests meeting. It was heard that both of PC’s parents were not of stable mind during this meeting and so the views expressed by a letter purporting to come from the family, dated April 2023 and signed by PC’s half-sister, were disregarded by the Court.

The Court heard how the family described PC prior to her injury as, amongst other things, “ambitious, working first before planning to return to university… full of life and a brave woman”.

In PC’s half-sister’s evidence, she wrote “…if PC could see herself now she would not want to be in the situation she is in at such a young age… She was always caring and considerate and a healthy person and would not want to carry on like this.”

The best interests analysis

The Court confirmed the only medical uncertainty regarding PC was whether she could experience pain and discomfort, as perceived by her behaviours, or whether these responses manifested from her medication. As there was no clinical way of determining this, it was held that no further assessments would be necessary.

When considering the best interests checklist, Mr Justice Cusworth considered what PC’s wishes and feelings would be, in light of the evidence provided. For example, PC’s likely concern with her family’s ongoing suffering, particularly her mother with whom she had lived with all her life. The judge also considered PC’s carers’ views; their upset seeing PC in distress and the unlikelihood of any tangible improvement to PC’s condition.

The judge considered that if CANH were to continue being administered, it would have little to no positive effect on PC’s quality of life. Whilst it was heard that a proposed transition to palliative care could lead to the prospect of discomfort and pain, with protocols in place to minimise this as much as possible, the judge noted that management of pain was a dominant feature of PC’s life under CANH treatment.

The decision

Mr Justice Cusworth concluded that furthering PC’s life in absence of positive enjoyment yet dominated by discomfort and pain, would not be in her best interests. Withdrawal of CANH would relieve not only PC from her day-to-day suffering, but also protect her family from augmented sadness if her misery were to be prolonged should her life end in the near future.

The judge therefore agreed with the applicant ICB for the CANH to cease and for PC to be implemented with a palliative care regime.

Comment

This devastating case highlights the importance of thorough analyses when undertaking best interests decisions. Not only should the views and beliefs of the patient be considered, but also their carers, family, and any others with an interest in their welfare.

While the preservation of life is frequently a prevailing factor, the complexities of deciding a particular individual’s best interests will also depend on their likelihood of recovery and impact on those around them. Therefore, these factors will be given such weight by the court as deemed necessary in the circumstances.