ETHICAL ISSUES

Ethical Issues in Palliative Care

J E Ellershaw Eve Garrard

The morality of euthanasia Euthanasia is one of the most difficult moral problems in palliative care. Patients suffering intractable pain or distress at lack of dignity or independence may ask for assistance in dying. To give such assistance is illegal, and many regard it as morally wrong what greater harm could be done to a patient than taking his or her life? However, death could be considered good for the patient, if it is a release from intractable pain. The principle of beneficence seems to conflict with the principle of non-maleficence, and the issue is further complicated when the patient has explicitly requested euthanasia respect for patient autonomy means the request should be taken seriously. A common view is that it is never right to kill a patient, even if he requests it, but sometimes it may be right to fail to treat a patient to let him die. Many moral philosophers regard this view (sometimes known as the acts/omissions doctrine) as suspect if the intention is to bring about the patients death, why does it matter, morally, whether this is done by killing him or by letting him die? It is the intention, not the means, that is morally significant if it were morally legitimate to meet a request for euthanasia by letting the patient die, it would also be morally legitimate to meet it by killing the patient, particularly because that would sometimes cause less suffering. Many individuals working in palliative care believe that requests for euthanasia need never (or very rarely) be made if good palliative care is provided. One of the principles of palliative care is open discussion with patients regarding their concerns and fears, and it is not uncommon for patients to express a desire to die. It is easy to become defensive and stress that euthanasia is illegal, but this may block further discussion; an alternative, more productive strategy is to explore sensitively what lies behind the patients request. Common factors include fear of dependency and becoming a burden, an experience of friends or relatives dying in pain or agitation, unrealistic prognostication giving a fixed timespan, and lack of knowledge of services offering help and support. Patients voicing such concerns need an opportunity to discuss their fears at a vulnerable time, and appropriate communication skills are essential to address their needs these include listening, reflecting, and the use of open questions in discussion. Simply handing the patient over to a colleague does not fulfil the doctors duty of care. Withholding and withdrawing treatment

Most aspects of health care raise moral problems. Ethical issues in palliative care are particularly pressing because they are often literally matters of life and death. Is it right to tell dying patients the truth about their condition, when doing so may cause them terrible distress? Can we justify withholding the truth from them, if they seem not to want to hear it? Can it ever be right to let a patient die? An ethical framework It has been suggested that all moral issues in the field of health care ethics arise out of one (or more) of four moral principles: beneficence doctors should try to help their patients non-maleficence doctors should avoid harming their patients respect for patients autonomy justice doctors should treat patients fairly. Problems arise when conflicts occur between, for example, the need to avoid harming patients (non-maleficence) and the need to give information without which patients cannot make their own decisions about how the rest of their life should be conducted (respect for autonomy). How should such conflicts be resolved? In the past, it was often thought that the principle of non-maleficence should always take precedence (above all, do no harm); recently, however, respect for autonomy has been considered at least as important. Many medical ethicists believe that which principle is most important varies between cases. Doctors must think carefully and sensitively about each moral problem they encounter, to make the best decision about what to do.

J E Ellershaw is Medical Director of the Marie Curie Centre and Consultant in Palliative Medicine at the Royal Liverpool University Hospital, Liverpool, UK, and Visiting Professor in Palliative Medicine at Erasmus University, Rotterdam, Netherlands. His research interests include ethical issues and the care of dying patients. He is Chairman of the Ethics Committee of the Association of Palliative Medicine. Eve Garrard is Lecturer in the Department of Philosophy at the University of Keele, UK, and Course Director in the Ethics of Cancer and Palliative Care in the University of Keele and at the Marie Curie Centre, Liverpool. Her research interests include medical ethics and moral theory.

Advances in medicine mean that an increasing number of therapeutic interventions must be considered in the context of palliative care; examples include ureteric stenting for renal failure and percutaneous endoscopic gastrostomy for dysphagia. The availability of such interventions does not necessarily mean that they are appropriate for all patients. It must be established whether a particular treatment is in the best interests of the patient, who must then give consent after full explanation and discussion. Consideration must be given to the benefits and burdens of any intervention, including potential improvements in quality of life, the degree of distress or discomfort the procedure may cause, and possible complications. When discussing treatment options with patients it is important to give a
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ETHICAL ISSUES

balanced view and to explain clearly what the plan of care will be if it is decided to withdraw or withhold treatment. If this information is not given, patients may opt for treatment because of false hope, or fear of abandonment by health care professionals. Advance directives Patients have the right to refuse treatment, provided they are competent to do so this is part of the principle of respect for their autonomy. When a patients autonomy is compromised such that he is not competent to take decisions about treatment, health carers normally decide on the basis of beneficence (patient welfare), and this usually means that patients who are mentally incompetent are given life-prolonging treatment whenever this is available. Some individuals feel they would not wish their lives to be prolonged should they become mentally incompetent, but would then not be in a position to exercise their right to refuse treatment. They can try to effect their preferences by signing an advanced directive (living will) a document outlining how they wish to be treated, and particularly how they do not wish to be treated, if they are no longer able to decide for themselves. An advance directive cannot require that certain treatments should be given, any more than a competent patient can demand specific treatments. Advance directives are not legally binding on health care professionals, but the British Medical Association has suggested that they should always be taken into account in medical decision-making for incompetent patients. Some health care professionals find advance directives unacceptable on the grounds that, if a patient is unable to communicate and confirm the validity of his previous wishes, the only morally legitimate basis for decisions must be his present welfare, and withholding treatment in accordance with an advance directive may not be in his best interests. This view may increase the likelihood of suicide, however, because this may be the only means left to the patient to ensure that his life is not maintained in circumstances which he regards as degrading or worthless. Another objection to advance directives is that the patient may subsequently change his mind, but might be unable to communicate this. An advance directive should be updated frequently, so health carers have good reason to believe that it reflects the patients most recent autonomous decision. Hydration Patients who die in the community or a hospice setting generally do not receive artificial hydration (hydration via the intravenous, subcutaneous or nasogastric route), whereas in hospital artificial hydration is relatively common. The issues to be considered vary according to whether the patient is in the dying phase of illness (expected to die in hours/days). If the patients condition deteriorates rapidly or unexpectedly resulting in an inability to take oral fluids, a full assessment should be undertaken and reversible causes treated appropriately; for example, hypercalcaemia may mimic the dying phase, but artificial hydration and bisphosphonates may reverse this problem. Other potentially reversible causes that may necessitate artificial hydration include total dysphagia, severe vomiting and intestinal obstruction. Artificial hydration may be given
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intravenously or subcutaneously, in which case addition of hyaluronidase, 750 U, may aid absorption. Cancer patients generally eat and drink smaller volumes as death approaches, often taking only sips of fluid. Evidence is limited, but suggests that symptoms of thirst and dry mouth do not appear to be related to level of hydration in these patients, who may maintain a normal biochemical profile despite their diminishing fluid intake. Symptoms are likely to be related to iatrogenic causes and to the mouthbreathing that is common at this time. Regular mouthcare is the most appropriate intervention. Relatives may express concern at the lack of hydration, and appropriate reassurance must be given. It is important to discuss with relatives that the patient is in the dying phase, and to ensure that this is fully understood. Symptom control at the end of life Health workers may be reluctant to administer medication to a dying patient for fear of killing them, but it is important that good symptom control is maintained. The most common symptoms in the dying phase are pain, agitation and respiratory tract secretions. It is important that drugs such as morphine which can no longer be taken orally are continued by an alternative route (e.g. subcutaneously), and that as-required medication is prescribed for these common symptoms. Anticipatory prescribing enables nurses to respond to patient distress without delay. Bereavement can be complicated if relatives have seen the patient dying in distress, but this can generally be avoided with appropriate prescribing and care. u

FURTHER READING Association for Palliative Medicine. Submission from the Ethics Group to the Select Committee of the House of Lords on Medical Ethics. London: HMSO, 1993. Beauchamp T, Childress J. Principles of Biomedical Ethics. 3rd ed. New York: Oxford University Press, 1989. BMA. Advance Statements about Medical Treatment: Code of Practice Report of the British Medical Association. London: BMJ, 1995. National Council for Hospice and Specialist Palliative Care Services and the Ethics Committee of the Association for Palliative Medicine of Great Britain and Ireland Joint Working Party. Ethical Decision Making in Palliative Care: Artificial Hydration for People who are Terminally Ill. J European Association Palliative Care 1997; 4(4): 124. Randall F, Downie R S. Palliative Care Ethics: A Good Companion. Oxford: Oxford Medical Publications, 1996.

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