Older adult’s attitudes to death, palliative treatment and hospice care

Background: Cancer patients who receive care from specialist palliative care services in the UK are younger than those who do not receive this care. This may be explained by age-related differences in attitudes to end-of-life care. Objective: To determine the relationship between age and i) attitudes to death and preparation for death; and ii) knowledge about, and attitudes to, cancer and palliative care. Design: Interviews with older people, using a novel questionnaire developed using nominal groups. Main comparisons were made between people aged 55–74 with those aged 75 years and over. Setting: General practices in London. Subjects: 129 people aged 55–74 and 127 people aged 75 years or over on the lists of general practitioners. Methods: A cross-sectional survey to determine knowledge and experience of hospice care; preparation for end-of-life; and attitudes to end-of-life issues. Results: Participants were knowledgeable about specialist palliative care and almost half had some indirect contact with a hospice. People aged >74 were less likely than younger participants to want their doctor to end their life in a terminal illness. Although they believed death was easier to face for older people, they did not believe that younger people deserved more consideration than older people when dying, or that they should have priority for hospice care. Education, social class, hospice knowledge and anxiety about death had little influence on overall attitudes. Conclusions: The relative under-utilization of hospice and specialist palliative care services by older people with cancer in the UK cannot be explained by their attitudes to end-of-life issues and palliative care

User involvement in palliative care : motivational factors for service users and professionals.

Background: Few studies shed light on what motivates or discourages patients, carers and professionals for participating in user involvement activities. Aim: To identify motivational factors that affect the engagement of service users and professionals with user-involvement activities. Methods: As part of a larger scoping study of user involvement in palliative care, 51 semistructured interviews were conducted with service users, palliative care professionals and experts to explore experiences of user-involvement initiatives. Four user-involvement programmes were also observed. Data were analysed using a thematic analysis technique. A subsequent consultation meeting with 48 service users and professionals discussed the preliminary findings. Results: User involvement has been predominantly developed through a 'top-down' professional agenda. A few highly motivated individuals, both service users and palliative care professionals, are extremely influential in starting and maintaining user involvement. Reported benefits include personal satisfaction and status but barriers are tokenism and time pressures