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Abstract
Research shows that over half the population would like to die at home, however only 20% achieve this.(1) This affects the quality of end of life care and bereavement outcomes. Numerous studies have examined place of death and its' predictors, however there is little published information about the factors that shape and influence the decisions patients make about their preferred place of care (PPC) at the end of life, or about which factors that influence and change these decisions over time.
Aims To identify the factors, from the individual's perspective, that influence and change preferences for PPC.
Design/results A descriptive explorative qualitative longitudinal study was undertaken with ethical approval. Four participants were recruited; all were female, aged 55–81 years. All participants had chosen a PPC, however they all wanted to remain at home for as long as possible. Only one achieved their PPC. Factors that influenced choice of PPC were
Becoming ill and realising that they were dying.
A desire to remain autonomous and to retain a sense of dignity and control.
Previous experiences of a location.
Care at home being intrusive.
Not wanting to burden family with care.
The need NOT to compromise close relationships.
Discussion Participants found discussion of PPC difficult made and assumptions for their carers. They had had little or no information about choice of PPC and none had recorded it in writing. There is a complex interplay of emotional and practical factors that influence PPC. Clear decisions about PPC were not made until dying was imminent. PPC should be viewed as a dynamic decision requiring regular reassessment. This research also demonstrated the difficulty of recruiting participants due to it being considered over burdensome by both patients and healthcare professionals, who adopted a gate-keeping role.