Talking About Dying: How To Begin Honest Conversations About What Lies Ahead

Royal College of Physicians, October 2018

Royal College of Physicians  report that highlights and challenges professional reluctance to engage in conversations with patients about uncertainty, treatment ceilings, resuscitation status and death. It offers some ‘mythbusters’ to get physicians thinking and signposts to tools and educational resources to support physicians and other healthcare professionals.

Click here to view the full report.

End of life care: strengthening choice: An inquiry report by the All-Party Parliamentary Group (APPG) for Children Who Need Palliative Care

All-Party Parliamentary Group (APPG) for Children Who Need Palliative Care, October 2018

Report that highlights five areas of particular concern, where many children and their families have limited access to:

  • children’s palliative care out of hours and at weekends
  • short breaks for respite
  • age-appropriate palliative care and smooth transitions to adult services
  • specialist children’s palliative care teams led by Level 4 consultants
  • advance care planning

Click here to view the full report.

End of life care in England: A briefing paper

Institute for Public Policy Research, May 2018

Every year in England and Wales over 500,000 people die. For three-quarters of these people, death does not come suddenly. Instead, dying is a process that may take days, weeks or even years, involving a progressive decline in functioning and frequent interactions with health professionals. During this time, many receive some form of end of life care, designed to ease any pain or distress caused by their symptoms, and to maximise their quality of life until the moment of their death. The value of this care cannot be understated, not just for those people who are reaching the end of their lives but also for their families and carers.  This report considers the:

  1. Cost of Care
  2. Quality of Care
  3. Patient and Carer Experience of Care

Click here to view the full report.

Honoring the voices of bereaved caregivers: a Metasummary of qualitative research

BMC Palliative Care, September 2017

Family caregiving in the context of advanced disease in particular, can be physically and emotionally taxing. Caregivers can subsequently face bereavement exhausted with few supports, limited resources and a significant proportion will develop negative psychological and social outcomes. Although some research has attended to the bereavement experiences of family caregivers who had cared for a person requiring palliative care, a comprehensive qualitative understanding of the impact of caregiving on bereavement has not been articulated. The purpose of this study was to conduct a qualitative metasummary to explore the experiences of bereaved family caregivers of people who received palliative care services, regardless of their underlying disease.

Click here to view the full text paper.

Effect of specialist palliative care services on quality of life in adults with advanced incurable illness in hospital, hospice, or community settings: systematic review and meta-analysis

BMJ 2017;357:j2925

This systematic review aims to assess the effect of specialist palliative care on quality of life and additional outcomes relevant to patients in those with advanced illness.  The review concludes that specialist palliative care was associated with a small effect on QoL and might have most pronounced effects for patients with cancer who received such care early. It could be most effective if it is provided early and if it identifies though screening those patients with unmet needs.

Click here to view the full text paper.

End of life care core skills education and training framework

Skills for Health, March 2017

This framework, developed in partnership with Skills for Care and Health Education England, promotes greater collaboration between organisations in the health and care sectors and in the community. The framework sets out standards for staff education and training and classifies key skills and knowledge into three tiers, ranging from general end of life care awareness to the in-depth knowledge needed to care for and support an individual approaching the end of their life, and their family. A accompanying training pack has been developed to increase awareness and understanding of the importance of working together to support people at the end of their lives.

Click here to view the framework.

Click here to view the Training Pack.

Commissioning care for people with dementia at the end of life: a mixed-methods study

BMJ Open, December 2016

This study aims to understand how end-of-life (EoL) care for people with dementia is currently commissioned (ie, contracted) and organised, with a view to informing the development of commissioning guidance for good-quality community-based EoL care in dementia.

Click here to access the full text study.