A retrospective review was performed of all patients cared for by St Joseph's Hospice, Hackney, London, in either the hospice or the home care setting, during the first six months of 1988. Patients referred to the two services were compared and home care patients further analysed to establish predictors of those who could be successfully managed at home. The results showed that those patients referred to the home care service were younger and more likely to be married. Hospitals were more likely to refer to the hospice, while community services referred more often to home care. Home care patients were likely to have a longer prognosis but were more likely to be recorded as experiencing anxiety/depression at presentation. Patients referred for home care were significantly more likely to die at home than in hospital. Those who did die at home were more likely to be married, less likely to be described as their own main carer and less likely to have been recorded as suffering moderate/severe pain at presentation.
Patients who are in the last few days of life are often too frail to take oral fluids and nutrition. This may be due entirely to the natural history of their disease, although the use of sedative drugs for symptom relief may contribute to a reduced level of consciousness and thus a reduced oral intake. Rehydration with intravenous (i.v.) fluids is the usual response in acute care settings, whereas the hospice movement has often argued against this approach. The issues are complex and involve not only physical, psychological and social concerns, but also ethical dilemmas. A review of the literature gives conflicting reports of the physical discomfort that may be attributed to dehydration in dying patients. There are many confounding variables, including the concomitant use of antisecretory drugs, mouth breathing and oral infection. It remains unproven whether i.v. fluids offer symptomatic relief in this situation. Hospice doctors are concerned that the use of i.v. fluids gives confusing messages to relatives about the role of medical intervention at this stage in a patient's illness. A drip may cause a physical barrier between a patient and their loved one at this important time. The use of other methods of fluid replacement are discussed. In the absence of definitive research in this area, the balance of the burdens and benefits of such treatment remains subjective. The prime goal of any treatment in terminal care should be the comfort of the patient. Decisions should be made on an individual basis, involving both patients and their carers wherever possible. Prolonging life in such circumstances is of secondary concern and i.v. fluids given in this context may be futile. The ethical dilemmas of withholding and withdrawing medical treatment in addition to those of conducting research in this area are discussed.
The use of continuous subcutaneous infusions of midazolam in six patients is described. These patients were all suffering from advanced cancer and cared for at home by a hospice-based team. The drug was used to control restlessness in the last stages of life and in all cases produced a beneficial therapeutic effect. In these cases it provided a desirable alternative to other benzodiazepines or phenothiazines, was convenient to administer and no side effects arising from its use were noted.
The concept of futility is frequently invoked by doctors as providing ethical justification for the unilateral witholding/withdrawal of treatment of marginal benefit. The term now appears in many institutional policies. Yet it provokes controversy in its application, often being characterized as an unwarranted infringement of patient autonomy. This paper explores the substance of assertions of futility and attempts to dissect out the issues commonly intertwined in appeals to the concept. An ethical analysis of its component parts is presented using a principle-based approach to derive appropriate duties of care applicable in specific scenarios. The usefulness of the concept of futility is challenged and an alternative model is offered to deal with the ethical dilemmas posed by the availability of treatments of marginal benefit.
In moments of candour, many nurses and doctors will tell you that they believe they have shortened patients' lives by administering or prescribing large doses of morphine in an attempt to control the pain of advanced disease. Professionals may become sympathetic to the possibility of legalization of euthanasia in such situations, fearing that they walk a tightrope between inadequate symptom control on the one hand and euthanasia on the other. Yet we, as health professionals, have a curious facility for blurring cause and effect when it comes to caring for dying patients.
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