End of life care

Most terminally ill patients will express a wish to die at home. To achieve this, patients must rely on the support of family carers, who may experience emotional and health difficulties in providing such care, both before and after the death. Healthcare professionals can help to relieve the burden on family carers, and there is guidance available to direct GPs and other community healthcare professionals on providing good anticipatory palliative care for patients, and support for carers.

This training programme and resource pack, produced by the University of Nottingham and funded by Marie Curie and Dimbleby Cancer Care, are intended to offer basic knowledge and skills for those who provide support for informal carers (usually family members or friends) who are providing home-based end of life care. There are seven sessions in the programme, which can be facilitated over a one-day course; each session contains extra content and exercises that can be used to expand the programme.

Family caregivers are crucial for supporting home death. We reviewed published qualitative research on home-based family caregiving at end of life (1998—2008), synthesizing key findings and identifying gaps where additional research is needed. Multiple databases were searched and abstracts reviewed for a focus on family caregiving and palliative care; full articles were reviewed to extract data for this review. In total, 105 articles were included.

Background: The aim of this study was to develop a tool to measure the family's difficulties in caring for cancer patients at the end of life at home: Family's Difficulty Scale in end-of-life home care (FDS).

Methods: The draft of the FDS was derived from a pilot interview survey and literature reviews. The questionnaires were sent to 395 bereaved family caregivers whose family members were patients with terminal cancer receiving home service.

The changing context of palliative care over the last decade highlights the importance of recent research on home-based family caregiving at the end of life. This article reports on a comprehensive review of quantitative research (1998—2008) in this area, utilizing a systematic approach targeting studies on family caregivers, home settings, and an identified palliative phase of care (n = 129). Methodological challenges were identified, including: small, non-random, convenience samples; reliance on descriptive and bivariate analyses; and a dearth of longitudinal research.

The quality of life of the person confronting the end stages of their life may be severely compromised without the support of family caregivers. Indeed, most people requiring palliative care would not be able to fulfill their preferences, such as care at home, without significant family caregiver input. As a consequence, health services are mandated to support the family alongside the person diagnosed with a life-threatening illness. In short, palliative care is supposed to be family centred. However, the quality and type of support made available to family caregivers has been questioned.