Expectations of future hospice patients: a qualitative exploration

Abstract

Background: Inpatient Hospice Care (HC) in the Netherlands is available for patients with life expectancies <3months. Insight in expectations of patients regarding HC is needed to make HC more patient-needs driven and future-oriented. A theoretical framework to evaluate expectations of patients, including structure, process and outcome of care (SPO) was used to explore future hospice patient’s expectations. Research Question: What are the expectations of future hospice patients regarding structure, process and outcome of care in a hospice in Dutch society? Methods: A qualitative study, using semi-structured interviews and thematic analysis, is performed in the Netherlands from Jan 2018-June 2018. A convenience sample of eleven patients with a life-limiting disease and two patient representatives was drawn. Results: Hospice admission is only expected when the burden is unbearable to die at home. Structure of care: patients expected a place with a homely atmosphere where you can continue the life you lived at home as much as possible, together with your family. Process of care: participants expected empathic and professional caregivers, capable of providing appropriate care. The General Practitioner is expected to stay involved in the care process, because of the mutual trust. Outcome of care: medical and daily care should be provided by competent professionals. Volunteers should provide supportive care. All caregivers should be competent in providing a listening ear and ‘being there’ for patients. Social care and spiritual care are mainly expected to be private matters, unless it is requested. Conclusion and recommendations: Future hospice patients have high expectations about HC regarding SPO. Perceptions about HC in the public domain should be nuanced responding to these expectations and information provision about HC should be improved. Then, expectations could be met and HC could be more patient-needs driven and future-oriented.