Community views on palliative care and hospice services and attitudes to death

This project aimed to study the relationship between community members' understanding of palliative care (PC) and hospice services and attitudes to death and dying.

A two-page postal survey of 1000 randomly-selected residents in the local government area of Ballarat, Victoria, yielded a 23% response. Twenty people joined focus groups and 24 people participated in phone interviews, There were more females than males among the respondents who were older, better educated and less religious than the general populace. Forty-three percent had personal experience with palliative care services.

People generally do not want to talk about death and dying and they are not concerned with palliative care until they need it. Then, they wish they had known about it sooner.

Medical practitioners were seen as the most likely source of information about PC services if and when they are needed. A printed handout was considered a good idea, either from a doctor or referring hospital, to provide family members with detail of available PC services, away from the immediacy of the diagnostic setting.

Age, state of health, marital status, level of education, religion and gender influenced respondents' understanding of palliative care and attitudes to death and dying. Males scored higher on the bio-physical medical view of palliative care and the choice factor; females scored higher on caring and emotion factors. People with prior palliative care experience expressed greater understanding of palliative care services as providing essential, coordinated care for more than just cancer patients in hospital. Respondents with no religious conviction or non-Christian religions were more inclined to agree that 'palliative care staff help people die when they want to.' Catholics and Anglicans agreed least with this statement. This survey provides a simple means of assessing respondents' understanding of palliative care and hospice services.

Current efforts at raising community awareness re PC services, including Palliative Care Week, are insufficient to provide the concerted education that is needed to more fully inform the general populace about the nature of palliative care and services available. Understanding is enhanced through surveys, focus groups and web-based resources, but, well-structured, timely handouts are invaluable.