End-of-life Decision-making for People in a Minimally Conscious State: A Review of the Application of the Mental Capacity Act 2005

Section 9: Lasting powers of attorney

A lasting power of attorney (LPA) is a legal document that lets a person (“the donor”) appoint one or more people (“attorneys”) to make decisions on their behalf if they become unable to do so. There are two types of LPA: (1) health and welfare and (2) property and financial affairs. If a health and welfare LPA is in place, the attorney has the power to make decisions about medical care and life-sustaining treatment. There has been increasing uptake of LPAs in the recent years with more than 2 million having been registered by the end of 2016.[2]

Section 15: Power to make declarations

This section contains the powers the Court of Protection has to make declarations as to the capacity of a person to make a specific decision and the lawfulness of any act done, or proposed to be done, to the person.

Sections 24–26: Advance decisions to refuse treatment

The MCA covers advance decisions to refuse treatments (ADRTs) (Section 24), their validity and applicability (Section 25), and effect (Section 26). An ADRT gives a person the right to make a decision to refuse treatment(s) in advance even if it results in their death. The importance of an ADRT is that if one exists and is valid and applicable to the clinical situation, then it carries the same weight as a decision made by that person with capacity, and so, a best interests decision would not apply (however, in the cases described below, even if a valid ADRT is in place, the case still needs to be referred to the Court of Protection). The uptake of ADRTs is still very low with rates in England estimated to be about 4% and Wales about 2%.[3]

Sections 35–41: Independent mental capacity advocate service

This service provides incapacitated vulnerable people support to make decisions about “serious medical treatment” (which includes providing, withholding, or stopping treatment) who have no family or friends to consult about such decisions. An independent mental capacity advocate will be instructed to represent an incapacitated person's views to those who are assessing their best interests.

W v M and Ors (2011)

This was the first time in England that a court was asked to authorize the withdrawal of CANH and to withhold all life-sustaining treatment from a patient in an MCS. The case placed particular significance on the importance of differentiating between a VS and an MCS. It involved a 52-year-old female in whom viral encephalitis 9 years earlier had left her with permanent and extensive brain damage. On emerging from the initial coma, she was diagnosed as being in a VS but later was changed to one of an MCS. M was sensate, aware of her environment, could respond to people and music albeit in a limited way, and could communicate about her needs.

In applying Section 4 MCA, the court concluded that it was not in the best interests of the patient to authorize the withdrawal of life-sustaining treatment including CANH. The court scrutinized many important factors, and while preservation of life was the decisive factor, it emphasized the importance of a person's past and present wishes and feelings as part of the best interests assessment. This assessment adopted a balance sheet approach (first articulated in Re A[12]) – weighing the advantages of continuing with CANH against the advantages of withdrawing CANH. While the court concluded that CANH should not be withdrawn in this case, it opined that judgments concerning future treatment options, e.g., antibiotic use, should be left to the treating clinicians because it was impossible to ascertain what would be in M's best interests for specific treatments at specific times in the future.

The judgment made observations to assist future applications for the withdrawal of CANH. It noted that any decision to withhold or withdraw CANH from a person in a VS/MCS must be referred to the Court of Protection. The judgment also noted that misdiagnosis may occur (it had previously opined that there had been older cases where patients having been diagnosed as being in a VS were probably in an MCS). Because misdiagnosis may occur, the judgment stated that in future, no application should be made for an order authorizing withdrawal of CANH from a patient in a VS/MCS unless certain assessments had been undertaken [Box 2].

The need for “rigorous evidential analysis” and the “absolute necessity for a structured assessment to have occurred” before any court application being considered was subsequently emphasized in St. George's Healthcare NHS Trust v P and Q.[13] This was emphasized, whilst acknowledging the inherent complexities of such cases, in an effort to produce more diagnostic certainty as the judge commented, he was aware of rates of misdiagnosis of around 40% for people in a VS actually being in an MCS.

An NHS Trust v L and Ors (2012)[14]

In this case, the court made declarations that it was lawful to withhold life-sustaining treatment including cardiopulmonary resuscitation (CPR) and invasive treatments such as ventilation and intubation in the event of a further serious medical deterioration. In doing so, the judgment threw up issues around diagnostic uncertainty and resource issues in providing such care.

The patient, Mr. L a 55-year-old man, had suffered severe hypoxic brain damage following a cardiac arrest. At the time of going to court, he was diagnosed as being in a VS; however, as court proceedings progressed, there was a possibility that he was at the lower end of the MCS spectrum. In contrast to W v M[15] where all parties were in agreement that withdrawal of life-sustaining treatment was in the best interests of the patient, in this case, the family held the view that Mr. L was aware of himself and his environment and as a Muslim would have wanted all possible life-sustaining treatment to be continued. Hence, they avidly opposed the treating hospital's position. An independent expert instructed by the official solicitor on behalf of Mr. L supported the position of the hospital that active CPR and/or similar treatment for a serious deterioration in his condition would not be in Mr. L's best interests.

An interesting aspect of this case was that as there were no doctors identified who would provide the relevant life-sustaining treatment at issue, the judge opined that there were therefore no actual treatment options for the Court of Protection to make a declaration about. Applications of this nature made under the MCA must specifically address what treatment options are available and not merely theoretically available. Courts cannot enforce a doctor to provide treatment contrary to their professional clinical judgment. In light of this, Section 4 MCA was applied and the balancing exercise contained therein looking at factors pointing toward and against the use of CPR. Having weighed the competing factors, the judge concluded “the balance comes down firmly against the provision of active resuscitation and/or other similar treatment” and granted the Trust's application. The judge eloquently added that “Harsh though it may sound…to take the opposite course would indeed be…to prolong Mr. L's death and not to prolong, in any meaningful way, his life.”

Aintree University Hospitals NHS Foundation Trust v James (2013)[16]

This was the first MCS case to come before the Supreme Court under the MCA and provided clarification regarding the approach to assessing best interests in such cases. It analyzed Chapter 5 of the MCA Code of Practice which explains what the MCA means by acting in someone's best interests and sets out a checklist or “test” for establishing what is in someone's best interests [Box 1]. Paragraphs 5.29 – 5.36 of the Code provides explicit guidance as to how someone's best interests should be assessed when making decisions about life-sustaining treatment. The judgment in particular drew on Paragraph 5.31 [Box 3].

Mr. James, a 68-year-old man, was admitted to hospital in May 2012 for constipation of his stoma. This problem was resolved, but he then acquired an infection which was complicated by chronic obstructive pulmonary disease, acute kidney injury, and persistent hypotension. His condition deteriorated, requiring transfer to the critical care unit where he remained dependent on artificial ventilation, nutrition, and hydration. There were marked fluctuations in his presentation, and at times, he was able to track people with his eyes, recognize and smile at his family, and turn pages of a newspaper and mouth what appeared to be words. However, there was no clinical improvement, and until his death in December 2012, Mr. James’ condition deteriorated. It was agreed by his treating clinicians that Mr. James met the criteria for an MCS. They felt that prospects of recovery were extremely low and that further invasive treatments would not be in his best interests. His family remained hopeful that although he would never have the same quality of life as previously, he may still be able to gain enjoyment from seeing his family and close friends. They did not agree with treatment being withheld, and despite the best interests meeting to discuss the issue, a consensus could not be reached.

The hospital applied to the Court of Protection seeking declarations including that it would be in his best interests for four specified treatments to be withheld in the event of clinical deterioration. These treatments included invasive support for circulatory problems, renal replacement therapy, CPR, and intravenous antibiotics for further infectious complications (although the latter was not pursued by the trust). Treating clinicians argued such treatments would be “futile and overly burdensome, with no prospect of recovery,” but the judge was not persuaded and felt unable to make the declarations sought. The case was referred to the court of appeal and then, posthumously, to the Supreme Court.

The Supreme Court concluded the Court of Protection's decision had been a correct one. They agreed that the treatments in question could not be described as futile as there was evidence that they had provided some benefit in the past and it was not the case that they were unable to return Mr. James “to a quality of life that was worth living.” Instead, they supported the judge's interpretation that recovery meant “resumption of a quality of life that Mr. James would regard as worthwhile.” There was evidence to suggest that he continued to gain pleasure from seeing his family and friends and therefore had a measurable quality of life. Although it was acknowledged that the treatments were burdensome, the Supreme Court concurred that Mr. James may have been able to recover in the sense that although he would never return to full health, he could regain a quality of life that he himself would consider worthwhile. The Supreme Court argued that “it is not for others to say that a life which the patient would regard as worthwhile is not worth living.” The judgment continues to provide salient guidance on the assessment of best interests applied in subsequent MCS case law [Box 4].

Sheffield Teaching Hospitals NHS Foundation Trust v TH and Anor (2014)[17]

The judgment, in this case, involving a 52-year-old man and the potential for withdrawal of CANH and active antibiotic treatment, reflected the decision in Aintree, reiterating the importance of patient's own views when constructing a balance sheet and coming to decisions about best interests. As in the case of W v M,[15] and applying recommendations from it, the judge in this case emphasized the importance of separating the diagnosis of MCS from that of VS. He adjourned the case so that Sensory Modality Assessment and Rehabilitation Technique/Wessex Head Injury Matrix (SMART/WHIM) assessments could be completed to determine the level of MCS.

The judgment elucidated two important issues. First, it emphasized the vital importance of seeking and establishing the patients’ views, wishes, and feelings on the decision at hand and how this closely involves evidence from family and friends to ascertain this where possible. The judge eloquently summed this up as “…whatever the ultimate weight to be given to TH's views it is important to be rigorous and scrupulous in seeking them out. In due course, the clarity, cogency, and force that they are found to have will have a direct impact on the weight they are to be given. “Wishes” and “best interests” should never be conflated; they are entirely separate matters which may ultimately weigh on different sides of the balance sheet.” (A best interests balance sheet is an “aide memoir of key factors and how they match up against each other” to enable a route to judgment rather than a substitution for the judgment itself– B v D[18]).

Second, there was analysis of ADRTs in MCS cases. Albeit proven not to be in place in this case had there been a valid and applicable ADRT proposed in this clinical scenario “the decision has effect as if he had made it and had had capacity to make it” (s26 (1)(b)).

County Durham and Darlington NHS Foundation Trust v PP and Ors (2014)[19]

This case involved an 85-year-old woman, P, who had a complex medical history. On admission to hospital, her diagnoses included atrial fibrillation, vascular dementia, and possible Alzheimer's dementia with diminished consciousness, ischemic encephalopathy, and cerebrovascular disease. She had previously had a cerebrovascular accident, and during the admission, she probably had a further cerebrovascular event. She made no eye contact, appeared unconscious, and was unable to communicate or respond to commands. One treating, doctor opined that P was considered as being “somewhere on the spectrum between the VS and an extremely low position of the minimally conscious/minimally responsive state.” It was felt that P had entered a terminal phase of her life which was evocatively described as “pre-terminal hibernation” and that P was extremely unlikely to make progress along the MCS spectrum before death supervened. Despite the by now established jurisprudence, and seemingly some diagnostic uncertainty, the judgment made no mention of consideration for SMART/WHIM assessments. The court granted declarations sought by the hospital to continue CANH via subcutaneous injection but not to provide CANH by a percutaneous endoscopic gastrostomy (PEG) tube or via an alternative artificial feeding regimen, e.g., nasogastric tube feeding, and not to resuscitate in the event of a cardiac or respiratory arrest.

The judgment specifically mentioned the provisions of the MCA must be interpreted with regard to the Human Rights Act 1998 (as the European Convention on Human Rights is enacted in the UK). In this case, as is the case for all such MCS cases, the decisions being made did engage her article 8 rights the right to respect for private and family life (for further exposition of article 8 rights in clinical care see Curtice[20]).

M and Mrs. N v Bury Clinical Commissioning Group (2015)[21]

This was the first case in which the Court of Protection allowed CANH withdrawal from a person in an MCS. It concerned Mrs. N a 68-year-old woman with profound physical and cognitive impairment resulting from advanced multiple sclerosis. Her condition, including dementia and quadriplegia, was described as “remorselessly progressive” with a prognosis of around 3–5 years. She had been receiving CANH via a PEG tube for 7 years. The application was brought by Mrs. N's daughter M, who argued that continuing with CANH would not be acting in her mother's best interests. She felt that her mother was in an “intolerable” situation and “no longer remained alive in any sentient sense.” Evidence provided by Mrs. N's family left the judge “in little doubt” that Mrs. N's wishes would have been to discontinue her treatment. The strength of this evidence led to the official solicitor reversing his position as he felt that it would be wrong “to continue to oppose the application” and hence in the end none of the parties involved opposed the application made.

Expert evidence was given by three medical practitioners, all of whom had been involved in establishing the Prolonged Disorders of Consciousness National Clinical Guidelines,[4] which aimed to provide clarity and consistency regarding the diagnosis and management of patients in a VS/MCS (the reader is heartily advised to read this judgment for an excellent contemporary review of VS/MCS diagnostic criteria). There was disagreement of opinion between these clinicians as to whether the term MCS could be applied to Mrs. N. It was argued that the term MCS had generally been attached to cases of “sudden-onset severe brain injury from whatever cause” and the practical purpose of evaluating a patient's conscious level in these cases was to establish their potential for rehabilitation. As this is not the case for an individual at the end stages of a progressive neurological condition such as MS who has impaired levels of arousal and interaction, two of the doctors had misgivings about using the term MCS. This was disputed by the third clinician who argued that both VS and MCS were “terms devised to be applied to patients with prolonged disorders of consciousness, irrespective of etiology.” All three doctors accepted that the Prolonged Disorders of Consciousness guidance did not exclude end-stage dementia or other progressive neurodegenerative disorders from the definition. Furthermore, completion of a SMART assessment had established that Mrs. N was reliably able to “fix and track” objects with her eyes, which precluded a diagnosis of VS. It was agreed the clinical findings established that Mrs. N was “at a low level of MCS.” The judge spent time elucidating the diagnosis because a VS diagnosis would have precluded a formal best interests assessment because of theBland judgment.

The judge stressed that, although withdrawal of treatment would lead to Mrs. N's death, the case was not about Mrs. N's right to die but was instead concerned with balancing the principle that places sanctity of life above all things with an individual's right to self-determination and made reference to Lord Justice Hoffman's judgment in the case of Bland “…the law must reassure people that the courts do have full respect for life, but that they do not pursue the principle to the point at which it has become almost empty of any real content and when it involves the sacrifice of other values such as human dignity and freedom of choice.” The judge granted declarations that it was lawful and in Mrs. N's best interests for her to receive CANH while urgent arrangements were put in place for her to be transferred to an appropriate care home/hospice and for a care plan to be drawn up for the withdrawal of CANH. This affirmed that in this case, “respect for Mrs. N's dignity and human freedom overwhelms further prolongation of life.” The judge was completely satisfied there was no prospect of Mrs. N having a life “she would consider meaningful, worthwhile, or dignified.” He concluded that it would have been “disrespectful to Mrs. N to preserve her further in a manner I think she would regard as grotesque.”

The judge made clear the focus was on Mrs. N's right to live her life at the end of her days in the way she would have wished. He had acquired an in-depth life story gleaned from her daughter, son, and ex-husband to formulate the likely views and attitudes of Mrs. N. The judge placed great emphasis on the importance of the wishes and feelings of an incapacitated adult being communicated to the court via family or friends with “cogency and authenticity” being afforded “no less significance” than those of a capacitous adult. The judge provided further eloquent discourse on this and the best interests assessment [Box 5].

Briggs v Briggs and Ors (2016)[22]

This case, like Bury, focused on the decision as to whether CANH should be continued or withdrawn for an MCS patient. However, unlike Bury, in this case, there was disagreement between the parties involved. The judge was asked to decide between a dichotomy of treatment plans: (1) that Mr. Briggs was moved to a rehabilitation unit for further assessment and treatment, including CANH, with potential for improvement or (2) that he was moved to a hospice where CANH was discontinued and to then receive palliative care until his death.

Mr. Briggs was a Gulf War veteran, and after active service, he joined the police force. He was involved in a road traffic collision in July 2015. He suffered a traumatic brain injury and after several months was diagnosed as being in an MCS being confirmed by SMART assessments. In spring 2016, he was determined to be in a middle ground between “MCS minus (the closest to a VS) and MCS plus (nearest to emergence from MCS)” but that there had been a small improvement since an initial assessment.

Around 17 months after his accident, the treating team opined that Mr. Briggs should be transferred to a rehabilitation facility where his progress could be “monitored and promoted” for at least 6 months. A realistic best case scenario was propounded that Mr. Briggs could be happy, experience pleasure, be able to make simple decisions, and not be distressed or depressed and that his troublesome paroxysmal sympathetic hyperactivity, dystonia, and contractures could improve. His wife and family were of the opinion that CANH should be withdrawn and he is transferred to a hospice where he would receive palliative care, enabling him to pass away peacefully. In doing so, they proffered several anecdotes illustrating Mr. Briggs’ views that he would have not countenanced the continuation of CANH had he had the requisite capacity to make the decision. Mr. Briggs had not made an ADRT or an LPA – had a valid and applicable ADRT been made it would have been decisive and hence no best interests decision would have needed to be made (interestingly whilst there is much discussion within many MCS judgments about the use of ADRTs and LPAs, none of them had either of these in place).

In considering the best interests test, the judge drew upon the Supreme Court decision in Aintree which made it clear a holistic approach was to be taken in considering the patient's welfare in the widest sense. He emphasized that the test was not a “what P would have done test,” but it was the best interests test requiring the decision-maker to perform a weighing or balancing exercise between a range of competing factors. It was still a “best interests” rather than a “substituted judgment” test, but he acknowledged that the preferences of the person involved were inevitably an important component in deciding where best interests ultimately lie (again noting the Aintree judgment which accepted the best interests test does include elements of a substituted judgment approach). He also stressed that a conclusion on what the person would have done was ultimately still not determinative of the best interests test.

The judge concluded that Mr. Briggs would have taken a realistic approach to his difficulties and that he would have been able to acknowledge the uncertainty with regard to recovery. Even with the best case scenario unfolding, he would still not have been able to lead an active or enjoyable life. In the end, the decision came down to the presumption in favor of preserving life, versus the arguments as to what Mr. Brigg's himself would have wanted had he the capacity to make such a decision. In weighing all the circumstances of the case, the judge concluded that the “weightiest and so determinative factor” in determining best interests was actually “what he would have wanted and done for himself.” He felt had Mr. Briggs “been sitting” in the judges’ chair hearing the arguments both for and against continuing his medical care, he would have opted to withdraw his CANH treatment. The court made declarations to this effect.

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