The Important Thing Is...: Patient and Family Voice in Palliative Care

• Main Author: van Aalst, Denise Lynda
• Language: en
• Published: University of Canterbury. Health Sciences 2013
• Subjects: palliative care; Patient and family voice; patient priorities in palliative care
• Online Access: http://hdl.handle.net/10092/8445

Dame Cicely Saunders created the hospice movement to be a voice for the voiceless. Those needing palliative care needed someone to speak for them and ensure they received the care they needed and deserved. Today, more than forty years later, the voice of the patient and family are in danger of being lost. This research aimed to discover what patients and their families thought were the most important priorities in palliative care. If hospices, and any other facility that cares for the dying, are to give the care that patients and their families need then the research in this thesis shows benefit to those patients and families if asked to identify what are their needs. If palliative care is to be truly holistic we need to find out from patients, and from their families, what they believe is important. Using purposeful sampling, five patients and five family members were recruited from a hospice in-patient unit. In-depth interviews with open-ended questions were conducted with participants who were asked to share what had affected their care, or their relative’s care, while admitted to the hospice. These interviews were recorded and transcribed in a qualitative descriptive study to identify and analyse what these participants described as the ‘important thing’ in palliative care. Specific, tangible detail was sought in order to define the ‘essence’ of palliative care as determined by those receiving it. Thematic analysis revealed four key themes and associated sub-themes relating to: the people who work in a hospice; the environment; philosophy and holistic care. This research enables those caring for the dying in any context, to use the information shared by these individuals as guidance to enhance the care they offer to a dying person so that their final days may be more tolerable, even perhaps pleasurable: to help them ‘live until they die’.