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Burke v GMC Summary of CEC responses to High Court Judgement

Request for comments and views on the Judgment in Burke v the General Medical Council

On 12th October an email request was sent to the Chairs of all clinical ethics committees (CECs) in the UK Clinical Ethics Network asking for the views of their committees, or their personal views, on the recent judgment in the judicial review of the GMC guidance on withholding and withdrawing life prolonging treatment. The following is a synopsis of the responses to this request from those committees or individuals who were able to consider the issue in the short time available. We received responses from seven CECs and six individual members of CECs.

Introduction

The general support for the GMC guidance expressed by Justice Munby was welcomed, as was the support that the decision gave to the principle of respect for autonomy, and placing decision-making about life-sustaining treatment in the hands of the patient. There was a general feeling that an advance directive about a patient’s assent to or request for treatment should be taken as seriously as a refusal of treatment in terms of respecting a person’s capacity to make decisions about their own treatment. However, the emphasis on individual autonomy raises questions about the impact of autonomous decisions on others, including health professionals and other patients. One CEC Chair commented that the move towards next of kin having a greater role as a patient’s proxy in the case of an incompetent patient was ‘ethically sound on the grounds that the family would act as a continuance of the patient’s asserted autonomy’. However there were some concerns about the role of the family in decision-making (see below). The series of directives on when to seek the courts advice in the event of differences of opinion was also welcomed, although clarification on certain points was sought (see below). The judgment was seen as a positive opportunity to bring these difficult issues into public and professional focus. As one member of a CEC commented,

”...we should be grateful for the opportunity to review and revise our assumptions”.

However, some concerns were expressed about several aspects of the judgment and their implications for day to day clinical practice. The general feeling was that clarification was required about specific terms and concepts, and about the likelihood of the judgement being extended to treatments other than artificial nutrition and hydration (AN&H). These concerns are summarised below.

Right to require treatment

Almost all responses included a concern about the concept of the right to require treatment, which was seen as a paradigm shift from the current position of a legally recognised right of a competent patient to refuse treatment, or to choose a treatment, but no corresponding right to require a treatment that the clinician did not think was in the patient’s best interests. The question was asked, ‘how does a right to require treatment fit with the statement that the courts will not mandate a doctor to provide treatment which he or she feels is inappropriate?’ Some respondents acknowledged that a right to require treatment could be seen as the flip side of the right to refuse treatment, and that it was inconsistent to allow one and not the other, but several respondents pointed out differences between the two situations that had both practical and ethical implications: These included:

  • A right to refuse treatment only requires competence and a person does not have to justify their refusal. Is this the same for a right to require treatment, or should a person have to justify their requirement in view of the wider implications (effect on health professionals and other patients) of complying with this requirement?
  • Does the right to require treatment place a duty on government and society to ensure that the requested treatment is provided (for example by providing more resources)?
  • Does the right to require treatment place an absolute duty on health professionals to provide the treatment required, or is there a limit on this duty, and if so what is the limit?

Setting precedent, limitations of treatment and definition of terms

Many of the concerns expressed were around how far this judgement could be extended to include situations other than the specific case of Mr Burke. Does the judgment only apply to AN&H in the case of a patient who has made a competent advance directive, and who will be fully aware until death is imminent? As the GMC guidance relates to withdrawal and withholding of life prolonging treatment in general, and not just AN&H, and the judgement applies to the guidance as a whole, the assumption is that the judgement must have wider implications than the specific case of AN&H. Key concerns and questions requiring clarification included:

  • Is AN&H seen as medical treatment or general care? Does the method of feeding make a difference, for example PEG feeding or intravenous feeding rather than nasogastric feeding. If it is seen as medical treatment, then does the judgement apply to all life sustaining treatments (for example ventilation, renal dialysis, cardiopulmonary resuscitation)? A comparison was made between feeding and hydration given to a person with a degenerative neurological disorder (seen as appropriate) and renal dialysis provided for someone who has suffered a major cerebro-vascular accident (CVA) and is comatose, when death is inevitable but not imminent (seen as possibly inappropriate).
  • Is the right to require treatment limited to life sustaining treatments, or could it be extended to all treatments? If a patient is the sole determiner of his or her best interests then can a competent patient require a treatment that is not clinically indicated on the grounds that it is in their best interests?
  • The definition of imminent death needs clarification if this is to be used as a criterion for when it is lawful to withdraw life sustaining treatment. It was pointed out that the imminence of death is often only realised retrospectively. If dialysis or AN&H are withdrawn when death is seen as inevitable, it may still be some time after withdrawal of treatment before the patient dies.
  • The concept of ‘intolerability as the touchstone of best interests’ requires clarification. Does this mean that a treatment that is distressing or unpleasant for the patient, in a situation where there is no possibility of recovery and no perceived quality of life, should be continued because it is not seen as intolerable. This was a particular concern in the case of children.
  • The focus on intolerability as the touchstone was seen as changing the framework for making these decisions. The current view that withdrawing treatment allows progression to an inevitable death unhindered by medical intervention would need to be reconsidered on the basis that treatment may be promoting benefit rather than hindering death. There was a concern that clinicians would be obliged to provide treatment that they considered futile or inappropriate to patients lacking capacity where, after appropriate multidisciplinary deliberations, discussions with family, and further opinions, treatment was thought not to be in the patient’s best interests, but could not be described as intolerable. A key issue here is the move from a judgement of best interests based on an assessment of quality of life (as determined by the patient, if competent, or their carers in the case of an incompetent patient) and best interests based on a much narrower criterion of intolerability (as determined by the patient or carers). In the case of an incompetent adult or child who has not previously stated their views, are the carers (including clinicians and family members) required to continue all life sustaining treatment unless to do so would be intolerable, or can they make a judgement that treatment, although tolerable, is not overall in the patient’s best interests?

Implications for informed consent/refusal/requirement of treatment

The judgment’s emphasis on the principle of autonomy, and the importance of a patient’s right to make decisions about his or her own treatment was strongly endorsed by respondents. The case brings into focus the importance of patients being able to make fully informed decisions about their care and treatment, particularly when those decisions relate to life sustaining treatment and when the decisions take the form of advance directives that will come into effect when it is no longer possible to discuss the situation with the patient. Concerns were raised by some respondents about the detail required in an advance refusal (or requirement) of treatment. Will a patient have to specify which form of AN&H they want or do not want? Will they have to demonstrate a precise understanding of the circumstances in which the decision would be made, and of the risks associated with treatment? Clarification was sought about what would happen if a patient who had previously made an advance directive requiring treatment, resisted treatment when it was administered to them as an incompetent person.

It was thought likely that this judgement would result in an increase in the number of advance directives being made. Clear guidance on handling of advance directives was sought, for example should there be a policy on reviewing advance directives to ensure that the patient have not changed their minds, or that the circumstances envisaged in the original directive have not changed. The draft Mental Capacity Bill refers to advance refusals of treatment. Will this be changed to include advance requests or requirements for treatment?

A specific issue was raised with regard to advance directives and children. If a competent child has made an advance decision requiring life-prolonging treatment, what is the position if, when the child becomes incompetent, the parents disagree and request that treatment is discontinued?

Conflict between individual autonomy and distributive justice

Several respondents commented on the impact of a right to require treatment on the distribution of resources for provision of health care to all who need it. The consequences of respecting an individual patient’s right to require treatment that is not though to be clinically indicated, or is thought to be futile, may be to deny the rights of other patients to have treatment from which they might benefit. The example of renal dialysis was used to illustrate this point. Providing dialysis to patients in whom death was inevitable, but not necessarily imminent, and who had no perceived quality of life, would mean that limited dialysis services would be denied to some patients who would benefit. A similar situation was described in relation to intensive care.

Resource implications

If unfairness as described above is to be avoided, significantly more resources may be required for the health service to provide treatment for all who require it. This will require consultation and public debate. A further implication of this judgement for health service funding is the apparent shift of responsibility for decision-making in the case of incompetent patients who have not previously made their wishes known from the clinical team to the courts. The need for training and resources to deal with these cases was highlighted.

Making decisions for incompetent patients who have not previously expressed their views

The importance of involving family and carers in decisions about treatment of incompetent patients was seen as fundamental to any decision-making process for incompetent patients, and the directives of when to seek the court’s advice was welcomed. However there were some points that respondents thought needed clarification in this area.

What is the limit of ‘unanimity among attending health professionals’? Could a health professional with peripheral involvement in the case require that a case was referred to court because he or she disagreed with a decision that had been agreed by all other members of the team and the patient’s family?

If there is disagreement between family members about what the patient would have wanted, or what is in the patient’s best interests, but the next of kin is in agreement with the health care team would a referral to court be required?

The judgement raises questions about the role of clinical judgement in end of life decisions, or indeed in any other treatment decisions, if the requirement for treatment lies with the patient, or with their family if the patient is incompetent.

Implications for education

Whatever the outcome of the GMC’s appeal, this judgment has highlighted the need for education of health professionals, patients and the public on decision making around the end of life. The judgment has provided a focus and an opportunity for public and professional debate and dialogue on these issues and as such it is to be welcomed.