End of life

Background: Family carers provide vital support for patients towards end-of-life, but caregiving has considerable impact on carers’ own health. The scale of this problem is unknown, as previous research has involved unrepresentative samples or failed to fully capture caregiving close to death. Aim: To quantify level of psychological morbidity and general health among a census sample of carers of people with cancer at end-of-life, compared to population reference data.

Background: Idiopathic pulmonary fibrosis has an uncertain and rapid trajectory after diagnosis. Palliative care is rarely utilized, although both patients and caregivers experience a distressingly high symptom burden. Most patients die in hospital. Aim: The purpose of this study was to explore bereaved caregivers’ experiences and perceptions of an early integrated palliative approach implemented at a Multidisciplinary Interstitial Lung Disease Clinic.

As the incidence of dementia is increasing, so health and social care professionals are facing a challenge to deliver good quality end-of-life care. Historically, it is not an area that has been afforded much attention until recently, but interventions such as Admiral Nursing are well placed and equipped to work with and support families at this time. It is essential, in supporting a family to live as well as they can following a diagnosis of dementia, to facilitate dying well with or from dementia.

In the global south where care services are sparse and familial care remains practically and socially important, end of life care often occurs within families. Furthermore, in health care related policy development, care is often assumed to be ensured by ‘traditional’ norms of extended family relationships. In this context, the demands of providing care may require care providers to relocate, as well as reorganize their everyday responsibilities.

Background Family carers provide substantial support for patients at end-of-life. It is important to understand how caregiving impacts on carers to guide appropriate interventions to improve carer wellbeing.  The aims of this study were to investigate levels of psychological distress and predictors of distress during end of life care giving in a national sample of family carers of people with cancer. Methods Four-month post-bereavement postal survey of a national census sample of relatives reporting a death from cancer 1–16th May 2015.

This article presents findings from research that explored how a community garden might function as a place of end-of-life and bereavement support. Adopting Participatory Action Research (PAR) methods, and informed by Third Place theory and notions of therapeutic landscape, creative consultations were held in the Garden and people's homes. The findings provide insights into the nature of informal care as it is played out in the liminal garden space, between home and institution.

In the palliative phase of a person's illness, the needs of the patient and informal caregivers are paramount. Caregivers often look to palliative care practitioners for support, guidance and emotional comfort. This article reviews the role of the informal caregiver at the end of life, summarising their concerns and needs. The paper also highlights caregiver difficulties in making the coping transition when the patient's medical condition becomes advanced and they require end-of-life care. The focus of the review is placed on discussions about Advanced Care Planning (ACP).

Background: Economic evaluation of palliative care has been slow to develop and the evidence base remains small. Aim: This article estimates formal and informal care costs in the last year of life for a sample of patients who received specialist palliative care in three different areas in Ireland. Design: Formal care costs are calculated for community, specialist palliative care, acute hospital and other services. Where possible, a bottom-up approach is used, multiplying service utilisation by unit cost.

Objective: Advanced cancer patients' prognostic understanding is associated with completion of Do Not Resuscitate (DNR) orders, which often represent engagement in advance care planning (ACP). Given caregivers' critical roles in patient decision-making about ACP and end-of-life care, caregivers' prognostic understanding may have a large additive effect.

Background: Little is known about the experiences of family caregivers of hospitalized patients with confirmed methicillin-resistant Staphylococcus aureus/multiresistant gram-negative bacteria (MRSA/MRGN) diagnosis at the end of life. The study at hand is a subproject of an interdisciplinary cooperation project that aims at developing a patient-, family-, and team-centered approach in dealing with MRSA/MRGN-positive hospitalized patients in palliative and geriatric care.