Article Text

Download PDFPDF

5 The difficulties faced by family caregivers when home is the preferred place of death
  1. Lynn Sudbury-Riley,
  2. Philippa Hunter-Jones,
  3. Ahmed Al-Abdin,
  4. Daniel Lewin,
  5. Sarah Dale and
  6. Karyn Johnston
  1. University of Liverpool, East Cheshire Hospice


Background Eighty per cent of people in the UK state they would prefer to die at home. A ‘good death’ is a key objective of palliative care and a comfortable death improves wellbeing among the bereaved. This study was designed to take a deep-dive into the service experiences of a new Hospice@Home service, with the overall aim of ascertaining the human stories behind Hospice@Home helping people to achieve their preferred place of death.

Methods We collected 45 narratives from bereaved caregivers whose family member had received Hospice@Home in the weeks prior to their death. We used the Trajectory Touchpoint Technique (TTT), a rich pictures methodology that enables the collection of deep and rich data. The TTT encourages people to talk about their whole Hospice@Home journey in 5 stages: pre-arrival, arrival, clinical care and support, comfort, discharge and aftercare. Narratives were recorded and transcribed verbatim before being subjected to thematic analysis.

Results We found multiple problems. A lack of awareness and understanding of hospice help among both families and some referring clinicians delays access. Even when offered, resistance comes from a reluctance to allow ‘strangers’ into their homes, a hesitancy to hand over the care of their loved ones, and/or a disinclination to use the service due to not feeling entitled. These barriers persist despite many families being in crisis. Certainly, we found Hospice@Home positively impacts quality of life and quality of death for patients. However, families were unable to equate their experiences with a positive impact on their own quality of life, resulting in many re-thinking their own place of death preferences.

Conclusions There are major gaps in care provision, particularly notable in the wider healthcare system, including GPs, Pharmacies, access to equipment, and private care providers.

Statistics from

Request Permissions

If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.