Determining the weight of religious values and beliefs in an application for withdrawal of life-sustaining treatment

In Northern Care Alliance NHS Foundation Trust -v- KT and Others [2023] EWCP 46, Mr Justice Hayden found, unequivocally, that KT: ‘…would not have wished his life to be brought to an end in the circumstances the Trust consider meet his best interests. He would rather suffer and hold out for the will of God… [he] would have wanted continued life-sustaining treatment even in the face of a coma with a terminal diagnosis of chronic kidney disease stage 5.’

While P’s wishes and feelings must be taken into account when evaluating their best interests (as per section 4(6) of the Mental Capacity Act 2005), it is rightly acknowledged in this judgment that they are not determinative and the weight to be placed on any particular factor is a question for the court. The issue in this case was, therefore, whether KT’s wishes and feelings - which were firmly grounded in his religious beliefs - carried greater weight than the terribly bleak medical evidence and the risk of a sudden and undignified death.

Background

KT was a 53-year-old man with end-stage kidney failure who, sadly, suffered a large left-parietal intracranial haemorrhage in February 2022, leaving him with significant brain damage. He was diagnosed as being in a prolonged disorder of consciousness (PDOC), at the very lowest end of the spectrum of consciousness. To sustain his life, he required clinically assisted nutrition and hydration (CANH), together with haemodialysis three times per week for his kidney disease.

There was consensus among those treating KT – and external consultants invited to provide second opinions - that there was no prospect of improvement; KT had a very limited life expectancy; he was at increasing risk of complications likely to result in pain/discomfort (if KT had any such vestigial capacity) or sudden death; and it was therefore in his best interests for life-sustaining treatment to be withdrawn. KT’s family, who, together with KT himself, were of strong Pentecostal Christian faith, were united and steadfast in their view that, notwithstanding the medical evidence, KT would have wanted treatment to continue; to hold out for the potential of a miracle or otherwise to die when God determines it to be his time.

Principles from case law

It is against this background that Mr Justice Hayden considered the case law which addresses the weight to be placed on wishes and feelings when determining best interests, and these principles should equally be borne in mind by medical professionals undertaking this exercise in practice.

In Re M (Statutory Will) [2009] EWHC 2525 (Fam), the judge made three key observations:

1) ‘P’s wishes and feelings will always be a significant factor to which the court must pay close regard’ 

2) ‘The weight to be attached to P’s wishes and feelings will always be case-specific and fact-specific…. One cannot, as it were, attribute any particular a priori weight or importance to P’s wishes and feelings; it all depends, it must depend, upon the individual circumstances of the individual case…. The weight to be attached to their wishes and feelings must depend upon the particular context… Just as the test of incapacity under the 2005 Act is, as under the common law, “issue specific,” so in a similar way the weight to be attached to P’s wishes and feelings will likewise be issue specific.’ 

3) ‘The court must of course, and as required by section 4(2) of the 2005 Act, have regard to all the relevant circumstances. In this context, the relevant circumstances will include…

a) the degree of P’s incapacity, for the nearer to the borderline the more weight must in principle be attached to P’s wishes and feelings…

b) the strength and consistency of the views being expressed by P;

c) the possible impact on P of knowledge that her wishes and feelings are not being given effect to…

d) the extent to which P’s wishes and feelings are, or are not, rational, sensible, responsible and pragmatically capable of sensible implementation in the particular circumstances; and

e) crucially, the extent to which P’s wishes and feelings, if given effect to, can properly be accommodated within the court’s overall assessment of what is in her best interests.’

These principles were reiterated in Wye Valley [2015] EWCOP where the judge noted:

‘… once incapacity is established so that a best interests decision must be made, there is no theoretical limit to the weight or lack of weight that should be given to the person’s wishes and feelings, beliefs and values. In some cases, the conclusion will be that little weight or no weight can be given; in others, very significant weight will be due.’ 

With that said, the expectation is that, although not determinative, P’s wishes and feelings will ordinarily carry great weight. As the judge noted in Re S and Another (Protected Persons) [2010] 1 WLR 1082, and subsequently endorsed in Re N (Mental Capacity: Medical Consent) [2015] EWCOP 76 and Briggs -v- Briggs [2016] EWCOP 53 as applicable to all best interests decisions:

‘…it is the inescapable conclusion from the stress laid on these matters in the 2005 Act that the views and wishes of P in regard to decisions made on his behalf are to carry great weight. What, after all, is the point of taking great trouble to ascertain or deduce P’s views, and to encourage P to be involved in the decision-making process, unless the objective is to try to achieve the outcome which P wants or prefers, even if he does not have the capacity to achieve it for himself?

The 2005 Act does not, of course, say that P’s wishes are to be paramount, nor does it lay down any express presumption in favour of implementing them if they can be ascertained. Indeed the paramount objective is that of P’s “best interests”. However, by giving such prominence to the above matters, the Act does, in my judgment, recognise that having his views and wishes taken into account and respected is a very significant aspect of P’s best interests. Due regard should there be paid to this recognition when doing the weighing exercise of determining what is in P’s best interest in all the relevant circumstances, including those wishes.’

These principles apply to all best interests decisions, including whether to continue with life-sustaining treatment and, even in those momentous circumstances, P’s wishes and feelings are not determinative. For example:

• In NHS -v- VT [2014] COPLR 44, the Judge held it was not in VT’s best interests to receive CPR notwithstanding his finding that VT’s religious beliefs were such that he would want to receive all possible treatment, even if it would entail suffering and likely be futile.
• In Manchester University NHS Foundation Trust -v- KM [2021] EWCOP 42, the judge held that ventilation on an ECMO machine should be withdrawn notwithstanding KM’s religious belief in divine healing.
• In Kings College Hospital NHS Foundation Trust -v- X [2023] EWCOP 34, ventilation and CANH was withdrawn despite the judge finding that X would have wanted treatment to continue in accordance with his Christian beliefs and to be with his family.

Conclusion

Returning then to KT and applying the principles in the case law outlined above, Mr Justice Hayden concluded that, having proper regard to all of the relevant factors, including KT’s deeply religious beliefs and values, the medical evidence ultimately led him to no alternative but to grant the trust’s application for withdrawal of life-sustaining treatment. It appears from the judgment that the factors which weighed most heavily in the judge’s mind when conducting the balancing exercise were the burdens and futility of continuing treatment, including haemodialysis which carried increasing risks each week, and the associated compromise to KT’s comfort and dignity in the last days of his life.

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