Background:
Choice and autonomy are key principles within palliative care in the UK and are enshrined within a number of health policy documents from 2008 onwards. However, it is unclear how people enact choice around their end of life care, particularly with regard to using hospice services.
Aim:
This study aims to explore patient, carer and staff perceptions of choice and decision-making in accessing a hospice day unit.
Method:
This study uses a social constructivist approach to grounded theory to explore perspectives. Fifteen patients and six carers participated in one-to-one semi-structured interviews using a PICTOR approach. Twenty staff, including hospice and referring staff, participated in nine one-to-one interviews and two focus groups. Transcribed interviews were analysed using an iterative process of coding, memoing, and development of core categories.
Results:
The overarching theme of ‘transience and transition’ captures that access to a hospice day unit is an uncertain and transient journey, with the ultimate transition being death. Staff perceived their role as one of intuitively ‘being there’, however professional constructs of need indicated a more ‘managed’ approach to supporting care. Patients responded to the transient nature of transition by focussing on the certainties of living and dying, particularly supporting others and managing everyday concerns. Carers experienced transience and transition with a sense of presentiment, exclusion and loss. Health literacy around palliative care and choice was limited in all three perspectives illustrating mixed understandings around hospice services.
Conclusion:
Essentially dying is not a passive transition but requires effortful and active engagement in supporting others, whilst also managing the requirements of everyday living whilst dying. The disruptive and emotional transition to hospice care challenges notions of choice, decision-making capacity, resulting in a ‘managed’ approach to care decisions. Acknowledging the uncertainty of dying whilst supporting individuals to manage everyday life, as well as an emphasis on relational care would help to meet patient and carer needs. Greater transparency, integration and awareness of services could facilitate transition and agency.
