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Death

FAIs: issues for families and carers

This article examines some of the areas covered by a review of the Fatal Accident Inquiry System in Scotland. The review followed the death of Roderick Donnett, a man with Down's syndrome who died whilst living in a care home. The article focuses specifically on key issue for families and carers as well as people with learning disabilities.

Thu, 07/20/2017 - 15:20

Supporting family caregivers at the end of life: they don't know what they don't know

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.

Thu, 07/20/2017 - 15:18

Trauma and growth in Canadian carers

The phenomenon of post-traumatic growth has been explored within the context of HIV disease in only a limited fashion. One hundred and seventy-six bereaved HIV/AIDS carers located all over Canada responded to a questionnaire about their experiences; 51.7% of these individuals were male, 46% were female and 2.3% were transgender. The range of deaths experienced was from 0 to 110. Forty-four per cent of the carers were themselves HIV-positive. Of all the HIV carers in this study, 86.4% of them exhibited symptoms of post-traumatic stress disorder.

Thu, 07/20/2017 - 15:17

Variant Creutzfeldt-Jakob disease: cost borne by families

This study aims to: estimate the costs borne by families caring for patients with variant Creutzfeldt-Jakob disease (vCJD); to contextualise results to recent initiative; and consider the methodological problems of estimating costs of care. Semi-structured interviews and a follow-up postal questionnaire, eliciting costs to families both before and after the patient's death, were carried out participants included 19 families of patients with vCJD. Cost profiles were constructed, detailing key time and financial costs associated with their relative's illness and death accursing to families.

Thu, 07/20/2017 - 15:15

End of life care strategy: promoting high quality care for all adults at the end of life.

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.

Thu, 07/20/2017 - 15:14

Which carers of family members at the end of life need more support from health services and why?

With end of life care a national priority in many countries, and the main place of care the family home, informal family carers are now considered the frontline of primary care. Yet we are insufficiently informed about the needs of carers, both during the time of caring and during bereavement. This study identifies which carers believed they did not get enough support from health services when caring for a terminally ill family member, what factors influenced perceptions of support, and whether inadequate support influenced the carer's health following the death of a family member.

Thu, 07/20/2017 - 15:13

The drama of end of life care at home

BACKGROUND: Many terminally ill patients want to die at home. Family carers are fundamental to achieving this, but often feel anxious and unprepared for the role. Supporting them is vital in palliative care.

AIM: To explore the experiences of carers of patients dying at home, in particular their expectations and preparedness for the dying process.

METHOD: The study followed a qualitative approach. In-depth, semi-structured interviews with 15 carers were carried out.

Thu, 07/20/2017 - 15:13

Place of death: preferences among cancer patients and their carers

The place of death of cancer patients has become an important theme in UK cancer and palliative care policy. This paper examines the place of death preferences of 41 terminally ill cancer patients and 18 of their informal carers, living in the Morecambe Bay area of north-west England. We interviewed cancer patients referred to the research team by 13 specialist palliative care professionals; patients had an estimated 3 months of life remaining.

Thu, 07/20/2017 - 15:12

Dying, death and bereavement: a qualitative study of the views of carers of people with heart failure in the UK

Background: This paper explores carers' views of dying, death and bereavement for family members who had recently died with heart failure adding to a growing literature on end of life experiences for people with conditions other than cancer.

Methods: Twenty interviews were conducted with bereaved carers of older people with heart failure (HF) who had been participating in a longitudinal study. Carers were approached in writing 3 months after the death. Interviews were transcribed verbatim and analysed thematically with the assistance of NUD*IST.

Thu, 07/20/2017 - 15:12

Patient and carer perspectives: a man with inoperable lung cancer

Patient and family perspectives are vital in conceptualising quality of life in the dying (1). The principles of a 'good death' have been established (2,3), and multidimensional frameworks exist for understanding and evaluating end-of-life care (4). However, care often falls short of the ideal, or is offered late. To examine why, we set out to understand the holistic needs of 40 patients dying from lung cancer or cardiac failure and their carers, and to explore to what degree these needs were identified and addressed by service providers (5).

Thu, 07/20/2017 - 15:11