How well do we currently care for our dying patients in acute hospitals

The aim of this study was to evaluate quality of care provided to dying patients and their families in acute hospitals from the perspective of bereaved relatives | BMJ Supportive & Palliative Care


Background: The National Care of the Dying Audit—Hospitals (NCDAH) is used as a method to evaluate care for dying patients in England. An additional component to the 2013/2014 audit was the Local Survey of Bereaved Relatives Views using the ‘Care Of the Dying Evaluation’ (CODE) questionnaire.

Conclusions: Adopting a postbereavement survey to NCDAH appears to be feasible, acceptable and a valuable addition. On the whole, the majority of participants reported good or excellent care. A small but significant minority, however, perceived poor quality of patient care with clear and timely communication urgently needed.

Full reference: Mayland, C.R. et al. (2017) How well do we currently care for our dying patients in acute hospitals: the views of the bereaved relatives? BMJ Supportive & Palliative Care. Vol. 07 (Issue 03) pp. 316-325.


Palliative Care in the Emergency Department

Cooper, E. et al. (2016) Emergency Medicine Journal 33:919-920


Objectives & Background: Emergency departments (EDs) receive a variety of patients: those with unexpected injuries or trauma, chronic disease exacerbation or progression and existing advanced disease or terminal illness. Thus expectations of attendees can vary greatly. However the primary focus of EDs is acute management.The provision of tailored palliative care (PC), that meets the unique needs of people with advanced disease, is often difficult in the ED. The main objective of this qualitative synthesis was to increase understanding of the ED experience of people with advanced disease, their relatives and healthcare professionals.

Conclusion: This synthesis has provided a greater breadth of insight to enable recurring themes regarding the potential conflicts between emergency care and PC to be identified with a view to overcoming the challenges faced. Significantly recognising the need for educating ED physicians in the scope and components of PC, improving interdisciplinary working and enabling better understanding of patients and carers about their likely disease progression and the opportunities open to them. Further research should focus on the best ways to provide such education, the specific reasons for shortfalls in communication and how these could be overcome.

Read the full abstract here

Inpatient transfer to a care home for end-of-life care: What are the views and experiences of patients and their relatives?

Thomas, T. et al. Palliative Medicine. Published online: July 2016

Background: Transfers from hospital or ‘hospice palliative care units’ to care homes for end-of-life care are an increasingly common part of clinical practice but are a source of anxiety and distress for patients, relatives and healthcare professionals.

Aim: To understand the experiences of patients discharged to care homes for end-of-life care.

Design: Systematic review and narrative synthesis of the UK literature concerning inpatient transfer from a hospital or hospice palliative care unit to a care home for end-of-life care.

Results: The published literature is very limited: only three papers and one conference abstract were identified, all of low quality using Gough’s weight of evidence assessment. No papers examined transfer from hospital: all were of transfers from hospices and were retrospective case note reviews. Many patients were reported to have been negative or ambivalent about moving and experienced feelings of anxiety or abandonment when transferred. Relatives were often either vehemently opposed or ambivalent. Although some came to accept transfer, others reported the transfer to have seriously affected their loved one’s quality of life and that the process of finding a care home had been traumatic. No studies investigated patients’ views prospectively, the views of staff or the processes of decision-making.

Conclusion: The UK literature is very limited, despite such transfers being an increasingly common part of clinical practice and a source of concern to patients, relatives and staff alike. Further research is urgently needed in this area, especially studies of patients themselves, in order to understand their experiences and views.

Read the abstract here

Communication between family carers and health professionals about end-of-life care for older people in the acute hospital setting

BMC Palliative Care 2015, 14:35

This paper focuses on communication between hospital staff and family carers of patients dying on acute hospital wards, with an emphasis on the family carers’ perspective. The age at which people in the UK die is increasing and many continue to die in the acute hospital setting. Concerns have been expressed about poor quality end of life care in hospitals, in particular regarding communication between staff and relatives. This research aimed to understand the factors and processes which affect the quality of care provided to frail older people who are dying in hospital and their family carers.

The study used mixed qualitative methods, involving non-participant observation, semi-structured interviews and a review of case notes. Four acute wards in an English University teaching hospital formed the setting: an admissions unit, two health care of older people wards and a specialist medical and mental health unit for older people. Thirty-two members of staff took part in interviews, five members of the palliative care team participated in a focus group and 13 bereaved family carers were interviewed. In all, 245 hours of observation were carried out including all days of the week and all hours of the day. Forty-two individual patient cases were constructed where the patient had died on the wards during the course of the study. Thirty three cases included direct observations of patient care. Interviews were completed with 12 bereaved family carers of ten patient cases.

Carers’ experience of the end of life care of their relative was enhanced when mutual understanding was achieved with healthcare professionals. However, some carers reported communication to be ineffective. They felt unsure about what was happening with their relative and were distressed by the experience of their relative’s end of life care.

Establishing a concordant relationship, based on negotiated understanding of shared perspectives, can help to improve communication between healthcare professionals and family carers of their patients.

via BMC Palliative Care | Abstract | Communication between family carers and health professionals about end-of-life care for older people in the acute hospital setting: a qualitative study.

“You only have one chance to get it right”: A qualitative study of relatives’ experiences of caring at home for a family member with terminal cancer

Totman, J. et al. ‘You only have one chance to get it right’. Palliative Medicine Online – 29 January 2015

Participants’ experiences of being a caregiver and of professional support were highly varied. The analysis generated 15 themes which were organised into a framework based on Yalom’s four “existential conditions”: responsibility (e.g., “being the linchpin of care,” “you only have one chance to get it right”), isolation (e.g., “being on my own,” “being held in mind”), death (e.g., “knowing but not knowing”) and meaningfulness (e.g., “giving something back,” “acceptance and gratitude”). Healthcare professionals were perceived as influential in both helping and hindering relatives in meeting the challenges they faced.