This case concerns an application by the daughter of the Patient (‘P’) under section 15 of the Mental Capacity Act 2005 (‘the Act’) for a declaration to determine whether it was in P's best interests to continue to receive life-sustaining treatment, by way of Clinically Assisted Nutrition and Hydration (‘CANH’) through a percutaneous endoscopic gastronomy (‘PEG’) tube.
P’s daughter brought the application as she strongly believed that the continuation of treatment was contrary to P’s best interests.
P was aged 68, and was physically and cognitively impaired due to the progressive and degenerative effects of multiple sclerosis.
In January 2008 a PEG tube was inserted, as P had a Body Mass Index of 13Kg/m2. Throughout 2009 P gained weight but by early 2010 P had deteriorated. P continued to deteriorate and P’s daughter was desperately distressed by the extent of P’s condition. The PEG had outlived its anticipated life and there were discussions regarding the replacement of the PEG.
The medical experts at the hearing were unable to agree whether P was in a Vegetative State (‘VS’) or a Minimally Conscious State (‘MCS’). They did agree however that she could fix and track objects within her line of vision, and that while some pragmatic adjustments could be made to improve the limited quality of her life, such measures could only accurately be described as palliative care.
The position of the Official Solicitor (‘OS’)
The OS opposed the application taking the strong view that the displacement of the strong presumption of the benefit of living had not been met. After hearing the family’s evidence the OS did not oppose the application but took a neutral view.
The court considered the National Clinical Guidelines in Prolonged Disorders of Consciousness.
It thoroughly reviewed the relevant case law. It referred to the decision in Airedale Trust v Bland  AC 789 and the guidance relating to identifying VS (paragraph 17). It reviewed the guidance in relation to MCS and ‘The Minimally Conscious State: Definition and Diagnostic Criteria.’ (paragraph 18) and the assessment tools such as the JFK Coma Recovery Scale – Revised (‘CRS-R); the Wessex Head Injury Matrix (‘WHIM”), and the Sensory Modality Assessment and Rehabilitation Technique (‘SMART’). It regarded these tests as essential (Re M (Adult Patient)(Minimally Conscious State: Withdrawal of Treatment)  1 WLR 1653;  EWHC 2443 (Fam), Baker J) (paragraph 22). Re M was the only previous case where withdrawal of CANH has been considered, and in Re M the facts of that case did not warrant the withdrawal.
The court emphasised that the starting point for the analysis was the Act, sections 1 and 4, and in this case 4(6).
The court considered paragraph 5.18 to 5.20 of the Code of Conduct, and section 42 of the Act stating that every decision maker has a statutory duty to ‘have regard’ to the Code of Practice.
It highlighted the observations made at paragraph 39 in Aintree University Hospitals NHS Foundation Trust v James and others  UKSC 67 where welfare should be considered in the widest terms, not just medical but social and psychological; and paragraph 55 in Re S (Protected Person)  1 WLR 1082 from these passages that where P’s wishes, views and feelings could be ascertained with reasonable confidence, they had to be afforded great respect, but they would ‘rarely, if ever’ be determinative. The court considered the importance of giving proper weight to Ps wishes, feelings and values: Wye Valley NHS Trust v B  EWCOP 60; Sheffield Teaching Hospital Foundation Trust v TH and TR  EWCOP 4; United Lincolnshire Hospitals NHS Trust v N  EWCOP 16.
It considered sections 24-26 of the Act relating to Advance Decisions and the individual's right to self-determination which existed alongside the presumption of prolongation of life (R (Burke) v GMC & Others  QB 424).
The court considered article 8 of ECHR and R (Purdy) v DPP  UKHL 45;
‘66 … If we are serious about protecting autonomy we have to accept that autonomous individuals have different views about what makes their lives worth living. There are many, many people who can live with terminal illness; there are many, many people who can live with a permanent disability at least as grave as that which afflicted Daniel James; but those same people might find it impossible to live with the loss of a much-loved partner or child, or with permanent disgrace, or even with financial ruin."
and Pretty v United Kingdom  35 EHRR 1:-
"65 The very essence of the Convention is respect for human dignity and human freedom. Without in any way negating the principle of sanctity of life protected under the Convention, the Court considers that it is under Article 8 that notions of the quality of life take on significance. In an era of growing medical sophistication combined with longer life expectancies, many people are concerned that they should not be forced to linger on in old age or in states of advanced physical or mental decrepitude which conflict with strongly held ideas of self and personal identity."
The court found that P was in a MCS but that the balance sheet approach in this case was artificial.
The court granted the application and made the declaration that upon certain conditions, for P to be moved to a hospice or care home with a care plan to be drawn up to manage the withdrawal of the tube in accordance with the National Guidelines, amongst other conditions.
The issues in the case were whether or not P was in a VS or MCS. The court highlighted that if it found that P was to be in a MCS then there must be a proper identification of the advantages and disadvantages (‘the balance sheet’ approach Re A (Male Sterlisation)  1 FLR 549’). It held that the balance sheet was a qualitative exercise rather than merely numerical (Re F (A Child)(International Relocation Cases)  EWCA Civ 882, para 52). If the court concluded that P was in a VS then the balance sheet exercise did not apply (A Hospital v SW  Med LR 273 at ). The court was unable to find that P was in a VS.
The court had heard compelling evidence from the family as to P’s background, her beliefs and values and what her wishes and feelings were when she had capacity. At paragraph 32 of the judgment it stated: ‘It follows, to my mind, by parity of analysis, that the importance of the wishes and feelings of an incapacitated adult, communicated to the court via family or friends but with similar cogency and authenticity, are to be afforded no less significance than those of the capacitous.’
The Act and the Code of Practice placed great emphasis on the importance of personal autonomy and the obligation to be alert to discrimination against those who lacked capacity. The courts had been keen to emphasise, particularly in cases involving questions of life-sustaining treatment, the importance of advance decisions complying with the form specified by statute.
All the experts agreed that if nutrition and hydration were withdrawn, P would not feel any pain. They also agreed that P would not achieve any kind of rehabilitation or recovery.
In the light of the medical evidence and the family’s evidence regarding P’s personality, wishes, beliefs and values it came to ‘the conclusion that it would be disrespectful to Mrs. N to preserve her further in a manner I think she would regard as grotesque.’ (paragraph 75).
Read the full text of the judgment on Bailii
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