Experience of dying: concerns of dying patients and of carers

Terminally ill patients frequently express concerns about what dying will be like: how their bodies may change as disease progresses, how medication may alter the effect of these changes and whether and how their preferences will be respected as they become more ill.

Thirty-six patients admitted to a hospice were interviewed and 18 carers of patients of the Palliative Care service, who had died participated in focus groups. Thirty-three patients had advanced malignant disease, 13 were women; their mean age was 68 years (range 44-92 years).

The areas of concern consistently identified by patients were (i) privacy and autonomy, principally in regard to families, (ii) a lack of information about physical changes and medication use as death approached and (iii) the desire to shorten life, which was expressed by all patients. Carers recalled problems accessing services and support and had needed more help with practical issues such as medication timing and dose. They believed that not enough information about the patients' illnesses had been given to them and they were insistent that carers should have information against the wishes of patients.

Some of the patients' and carers' concerns can be readily addressed. Others, particularly access to confidential information, cannot be addressed without a realignment of professional ethical standards and community expectations. The patients' discussions of their desire to shorten life may have implications for the debate on euthanasia and physician-assisted suicide.