Background Hospice care is not well understood leading to fear and taboo about planning for end of life. This fear limits ability of people to fully live until they die. To challenge preconceived views the hospice accepted an invitation to film a TV documentary enabling people to gain wider understanding of the range of hospice support. Patients and families at the end of life can feel disempowered and the importance of having a voice becomes even more powerful (Watts, 2018).
Aims To enable the stories and experiences of patients and families to be heard and shared. To raise public awareness of the range and impact of hospice services.
Methods An observation documentary model (Nichols, 2001) was used, with an identified Clinical Lead, working closely with the clinical staff and the TV crew. Careful planning was essential ensuring the range and breadth of hospice care was recorded, highlighting hospice beyond the walls. Posters were displayed alerting patients and families. Patients were invited to participate by their key worker. Full explanation was given to participants, with consent obtained prior to filming. Patients without capacity were excluded but their relatives included. The Clinical Lead had increased visible presence during the 13 weeks filming across clinical areas ensuring equal access to patient stories.
Results Some clinical staff were reticent, acting as gatekeepers, impacting on opportunities for patients and families, addressed by Clinical Lead’s presence. A surprising number of families showed a willingness to talk at intense critical moments in their journey.
Families have valued the lasting legacy this has provided.
‘If filming highlighted to others what services are provided I feel it has been of benefit’ (Patient)
Conclusions Patients and families value telling their stories and feeling heard. Barriers to participation of patient involvement have reduced as clinical awareness of therapeutic benefits has grown.
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