A framework, not a straitjacket

The General Medical Council draft consultation document, 'End of life treatment and care: Good practice in decision-making' (March 2009), provides a welcome framework of guidance to doctors making potentially fraught treatment decisions at the end of a patient's life. It also furnishes lawyers both with a useful legal yardstick and an ethical compass to evaluate whether a patient's rights have been adequately safeguarded and respected by those doctors.

Dignity and respect

The GMC emphasises that the guidance 'is not, and cannot be, exhaustive', and that doctors thus need to use their own judgment to apply the principles it sets out to the situations they encounter in practice. Hence it is not a straitjacket, but nevertheless doctors, in keeping with the general requirements of Good Medical Practice (2006), must be able to explain and justify their end-of-life treatment decisions.

Moreover, the guidance is based on long-established ethical principles, including doctors' obligations to show respect for human life (sanctity of life), protect the health of their patients (beneficence), and to make the care of their patients their first concern (arguably autonomy and human rights). The guidance flags up the centrality of equality and human rights concerning the care of dying patients, and is underpinned by the principle that 'good end-of-life care helps patients with life-limiting conditions to live as well as possible until they die, and to die with dignity'.

Vital justice

These ethical strictures reinforce the vitality of justice in end of care treatment. Doctors are clearly warned that in providing NHS services '“ including treatment decisions and care at the end of life '“ they must be able to demonstrate that their decisions are consistent with s.6(1) of the Human Rights Act 1998, which imposes a duty on all public authorities to comply with the ECHR.

Importantly, the guidance emphasises that decisions about life-prolonging treatment 'must start from a presumption in favour of prolonging life' and will normally require the doctor 'to take all reasonable steps' to prolong a patient's life. However it equally recognises that there is no absolute obligation to prolong life irrespective of the consequences for the patient, and that decisions must take account of the patient's views where these are known or can be ascertained.

Significantly, the guidance adds that if a patient asks for treatment that the doctor considers would not be of overall benefit to them, ultimately they do not have to provide it. Patients generally cannot therefore demand treatments.

Law and ethics

The need to explore treatment options with patients, relatives, or carers is emphasised, focusing on the goals of care and explaining the likely benefits, burdens and risks, which in the case of cardio-pulmonary resuscitation (CPR), for example, and clinically assisted nutrition and hydration, may not be evident to patients or carers. Decisions about stopping treatment should not be viewed 'as an action which is morally different from not starting treatment.' Legally and ethically the two decisions are indistinguishable.

The sad reality of limited resources in care of the dying is highlighted too. Drugs and intensive care beds are both finite and costly. Moreover, doctors will have to balance competing duties towards the individual patient, the wider population, funding bodies and employers '“ a case of autonomy versus justice.

In the case of incompetent patients or those with problems communicating their decisions, doctors are warned not to 'simply substitute [their] own values or those of the people consulted about the patient' nor to rely on 'personal views about a patient's quality of life' and to avoid adopting stereotypical views about treatment decisions concerning certain categories of patient, for example the elderly and/or disabled.

Ideally, a consensus should be reached about what treatment and care would be of 'overall benefit' to the patient, but in the event of disagreement, ultimately an application must be made to the appropriate court /statutory body for a ruling.

Avoiding conflict

Doctors can navigate some of the emotional seas of end-of-life scenarios by advance care planning so that arrangements can be made to manage the final stages of a patient's illness. Hence conflict or litigation can be avoided if the patient, doctors and family have discussed sensitively and agreed the end-of-life care.

The guidance acknowledges that the current evidence about the benefits and burdens of these techniques in treating and managing patients towards the end of life is 'not clear cut'. Doctors must carry out an assessment of a patient who cannot eat orally and of their individual nutrition and hydration requirements. The patient and healthcare team, or relatives (if the patient is incompetent), must be fully involved in the decision.

Concerning recourse to CPR, the guidance states that 'a decision about whether CPR should be attempted should be made only after careful consideration of all relevant factors' '“ including the likely clinical outcome of the CPR, the patient's wishes and human rights, possible distressing side effects of CPR, and the patient's level of awareness '“ and 'usually in discussion with the patient and those close to patients who lack capacity to decide'.

Mutual benefits

The GMC hosted a consultative conference on the guidance on 3 June 2009, comprising doctors, patient and carer representatives, palliative care, faith-based organisations and other healthcare professionals. The consultation period ends on 13 July 2009.

The GMC guidance, when approved, as well as clarifying doctors' responsibilities for providing end-of-life care for patients, and shedding daylight for lawyers acting for dying clients, may hopefully be beneficial for patients and their carers in introducing an element, arguably small, of control in a process (dying) with no control.