What do Future Hospice Patients Expect of Hospice Care: Expectations of Patients in the Palliative Phase Who Might be in Need of Hospice Care in the Future: A Qualitative Exploration

Abstract

Introduction: Hospice care (HC) in the Netherlands is available for patients with life expectancies <3 months. Little is known about expectations of patients who might be in need of HC. This study aims to gain insight into expectations of patients regarding HC in order to ameliorate HC to become driven by patient needs. Design: A generic qualitative study, using semistructured interviews and thematic analysis, is performed in the Netherlands from January to June 2018. A purposeful sample of 13 participants was drawn. Results: Participants expected hospice admission only when the burden became unbearable and a home death cannot be reached. Participants expected a homely atmosphere, where one can continue the life lived at home as much as possible. Participants supposed empathic professional caregivers, capable of providing appropriate care. The general practitioner is expected to stay involved in the care process due to the mutual trust. Medical and daily care are required to be provided by competent professionals, where volunteers are expected to provide supportive care. All caregivers are supposed to provide a listening ear and “being there” for participants. Social care and spiritual care are generally projected to be private matters, unless it is requested. Conclusions: Patients in the palliative phase who might be in need of HC have specific expectations. Perceptions of HC in the public domain should be nuanced in response to these expectations, and information provision on HC should be improved. Then, expectations could be met to make HC more driven by patient needs and future oriented.

The Dignity of Middle Adult Palliative Patients at Home in Bantul

“…The attitude of the caring family members has an influence on the patient's comfort. Based on the results of research from Klinken et al (2020) [13], it showed that the expectations and comfort of patients with palliative care conditions at home in going through the disease process were influenced by how caring caregiver's attitude was, trust in the caregiver, and feelings of being supported. Patients need caring family members to be around at all times and be able to discuss the patient's hopes and desires.…”

Hospice Care Access: a national cohort study

“…The unique situation of hospice care in the Netherlands equates to substantial variations between hospices in how care is approached, organised and provided 7. Given these variations in what constitutes hospice care on a national level, existing research does not explain how these services differ and for whom they provide care 11. Is there a relationship between patient care needs and the care provider (hospice or type of hospice), that patients with complex needs preferentially access hospices with specialist services, such as SAHs?…”