Terminal care

Background: New public health approaches to palliative care prioritise the role of community at end of life. However, little is known about community support for the increasing numbers of people dying in advanced age. Aim: To explore the role of community at end of life for people dying in advanced age from the perspective of their bereaved family caregivers. Design: A constructionist framework underpinned a qualitative research design.

Introduction: Informal caregivers play a pivotal role in supporting patients approaching the end of life. The Carer Support Needs Assessment Tool (CSNAT) is designed to facilitate person-centred assessment and support through a process that is practitioner-facilitated, but carer-led. This study explored practitioners’ experiences of implementing the CSNAT in palliative homecare. Methods: We conducted qualitative interviews/focus groups with 20 practitioners in one UK hospice homecare service (18 nurses, two healthcare assistants) before and after the implementation of the CSNAT.

This study evaluated the impact of a Cambridge hospital at home service (CHAH) on patients' quality of care, likelihood of remaining at home in their final 2 weeks of life and general practitioner (GP) visits. The design was a randomized controlled trial, comparing CHAH with standard care. The patient's district nurse, GP and informal carer were surveyed within 6 weeks of patient's death, and 225 district nurses, 194 GPs and 144 informal carers of 229 patients responded. There was no clear evidence that CHAH increased likelihood of remaining at home during the final 2 weeks of life.

Marie Curie campaigns to ensure that more people are able to be cared for and die at home. Previous research has shown that 63% of people would choose to die at home if they were terminally ill, however the reality in the UK is that just 21% of people die at home, while the majority (53%) die in hospital. This report describes the direct experiences of carers looking after someone at the end of life. It is based on interviews with 40 carers who were currently caring for a sick friend or relative or had been bereaved.

Aim. This paper is a report of a study conducted to explore the determinants of satisfaction with health and social care services in the last 3 months and 3 days of life as reported by bereaved relatives of those who died from a stroke in an institutional setting.

Background. There is limited research about how best to meet the needs of those who die from stroke. A thorough understanding of the determinants of satisfaction with end of life care is crucial for effective service provision to increase awareness of the needs of dying patients.

Negative social attitudes, discrimination, and homophobia affect gay, lesbian, bisexual, and transgender (GLBT) individuals during their lifetimes. These experiences can affect how these individuals access health services and interact with health professionals, resulting in adverse outcomes compared with their heterosexual counterparts. End-of-life experiences can also be shaped by these factors.

There are an estimated half a million people in the UK who provide unpaid care for a relative or friend with a life-limiting or terminal illness at any one time. Every year thousands of people take on a caring role, whereas others find that this role has ended. This guide has been developed by an expert working group, and provides a framework for developing a carers’ assessment process. It offers advice on how to identify carers and gives an overview of the assessment methods currently used by palliative care providers.

Even for patients receiving complex, intensive medical care for serious and life-threatening illness, family caregiving is typically at the core of what sustains patients at the end of life. The amorphous relationship between physicians and the families of patients at the end of life presents both challenges and opportunities for which physicians may be unprepared. Families play important roles in the practical and emotional aspects of patient care and in decision making at the end of life. At the same time, family members may carry significant burdens as a result of their work.

This paper reports on data from the Regional Study of Care for the Dying, conducted in 1990, and compares symptoms, care and service utilization for patients with chronic lung diseases (CLD) and lung cancer (LC) in the final 12 months of life. Post-bereavement structured interviews were conducted with informal carers of 449 LC patients and 87 CLD patients. The LC patients were significantly younger than those with CLD (P = 0.001) and these respondents were more likely to have been a spouse (P = 0.034).