By June 2021, AH’s clinical team considered that it was no longer in her best interests to receive ventilatory support and treatment [11], and the basic point at issue was between what AH’s family had described as changes in how she had reacted and communicated to them in recent months, and the medical prognosis of her treating clinicians [8].

By June 2021, it had been confirmed that cardiopulmonary resuscitation would not be offered and that her critical care support would not be increased from its current level – and all her family had agreed with that [14]. During further assessments in July 2021, her clinicians noted her increased distress: she had no recall, and though she was able to answer simple questions she struggled with more complex ones. Again, that was agreed by the entire clinical team and her family, though her visible distress was “punctured by occasional shafts of happiness, such as when AH sees her family” [15]. Nevertheless, her clinicians considered that she continued to lack capacity [16] and there had been no meaningful change in her condition since the previous hearing in August 2021 – and for most of her waking hours she was “crying and distressed” [30].

AH’s best interests were to be determined by s 4 Mental Capacity Act 2005 and the associated Code of Practice [65]. Under the Code:

“All reasonable steps which are in the person’s best interests should be taken to prolong their life. There will be a limited number of cases where treatment is futile, overly burdensome to the patient or where there is no prospect of recovery. In circumstances such as these, it may be that an assessment of best interests leads to the conclusion that it would be in the best interests of the patient to withdraw or withhold life-sustaining treatment, even if this may result in the person’s death. The decision-maker must make a decision based on the best interests of the person who lacks They must not be motivated by a desire to bring about the person’s death for whatever reason, even if this is from a sense of compassion. Healthcare and social care staff should also refer to relevant professional guidance when making decisions regarding life-sustaining treatment” [66].

As with all decisions, before deciding to withdraw or withhold life-sustaining treatment, the decision-maker must consider the range of treatment options available to work out what would be in the person’s best interests. All the factors in the best interests checklist should be considered, and in particular, the decision­ maker should consider any statements that the person has previously made about their wishes and feelings about life-sustaining

Importantly, section 4(5) cannot be interpreted to mean that doctors are under an obligation to provide, or to continue to provide, life-sustaining treatment where that treatment is not in the best interests of the person, even where the person’s death is foreseen…” [66].

Theis J concluded as follows:

“Having considered the evidence as a whole and weighed the respective benefits and burdens of continuing treatment, including carefully weighing in the balance the strong presumption that it is in AH’s best interest to stay alive, which would accord with her religious beliefs and is something her family strongly wish to happen, I have reached the conclusion that the very real burdens in the particular circumstances AH is in, with the prospect of no change and more probably a continued deterioration which may last many months of treatment, with the risk of an infection and dying away from her family, outweigh those very considerable benefits. If she is going to die her wishes are more likely to be that she would wish to do so with her family present” [93]

Though in doing so she was “acutely aware” that it was not the outcome that AH’s family would want [94], she granted the declaration sought by the NHS Trust [95].