Terminal care

Aims and objectives.  Few surveys have been carried out documenting the quality of life for non-cancer patients in general district hospitals reaching the final trajectory towards death. We carried out a survey of 80 patients facing the final stages of their chronic illness as well as their carers and hospital staff.

The present survey aimed to describe and compare the main needs and problems experienced by informal caregivers of Black Caribbean and White native-born patients in their last year of life. Out of the 106 Black Caribbean and 110 White patients identified as dying during the survey period, 50 interviews per ethnic group were conducted, a response rate of 47% and 45%. Out of these, 31 respondents representing Black Caribbean and 28 representing White dependants said that they bore the brunt of caregiving.

A cross-sectional postal survey of bereaved carers was conducted in order to examine levels of satisfaction with services provided for people in their last year of life in the rural county of Powys, Wales, UK. A self-complete questionnaire, using a modified version of the Views of Informal Carers – Evaluation of Services instrument was sent to all bereaved carers of all those people dying of cancer in Powys between 1 April 1999 and 30 June 2001. Eight hundred and five (out of a possible of 815 people) were contacted and 407 agreed to receive the questionnaire.

The aim of this study was to explore by whom, how, and when discussions about prognosis and end-of-life issues should be initiated with terminally ill patients, and the context in which these issues can be optimally discussed. Focus groups and individual interviews were conducted with 19 palliative care (PC) patients, 24 carers, and 22 PC health professionals (HPs). Participants had disparate views regarding by whom and when such discussions should be initiated, although a similar range of perspectives was expressed by all participant groups.

A researcher who conducted a study on the experiences of informal carers of terminally ill patients had difficulty gaining access to participants. In many cases this was because nurses would not refer them to the researcher without the permission of a doctor.

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.

Health professionals such as nurses, physiotherapists and occupational therapists provide a wealth of support in the community to patients and their carers receiving palliative care. Moving and handling is one such support that needs careful consideration and assessment including risk, by appropriately qualified professionals. A combination of skills are required as well as knowledge of up to date equipment to assist the health professional in deciding how to formulate safe moving and handling interventions in a timely way.

Background: The end of life may be a time of high service utilisation for older adults. Transitions between care settings occur frequently, but may produce little improvement in symptom control or quality of life for patients. Ensuring that patients experience co-ordinated care, and moves occur because of individual needs rather than system imperatives, is crucial to patients’ well-being and to containing health-care costs.

This publication sets out a vision for giving people approaching the end of life more choice about where they would like to live and die.