Hospice care aims to optimize the quality of life of patients and their families in the last phase of life by diminishing physical, psychological, social and spiritual suffering. Expectations are associated with patient satisfaction. A theoretical framework was used, distinguishing expectations with respect to process, structure and outcomes. The aim of the study is to explore expectations of hospice care of future hospice patients.
A generic qualitative study was performed from January to July 2018. Eleven patients with a life expectancy <1 year (‘surprise question’) were enrolled. In addition, two patient advocates were included to gain a broader view on expectations. Semi structured interviews were transcribed verbatim, analyzed by 2 researchers independently and results were discussed in the research team.
The participants covered a range in gender, age, spiritual beliefs, living area, primary diagnosis, phase of palliation and knowledge on the topic. Participants expect to be admitted to hospice when death was imminent and dying at home becomes impossible. They expect a homelike environment and the ability to continue living like being at home. Participants are sure that caregivers in hospice care are loving and trustworthy. Without doubt patients expect them to provide appropriate care and treatment with the skills and knowledge necessary.
Hospices have the responsibility to ensure nuanced and balanced information on hospice care in the Dutch society to set realistic expectations. Information about the possibilities and aims of hospice care, including short stay admissions, respite care and support at home in collaboration with primary caregivers should be widespread to ensure timely and appropriate hospice care for all patients in need.
Clinical trial identification
Legal entity responsible for the study
All authors have declared no conflicts of interest.