"I just need to know they are going to do what they say they're going to do with my mom." Understanding hospice expectations from the patient, caregiver and admission nurse perspective

Abstract

Objective: The objective of this paper is to understand patient, caregiver and hospice admission nurses needs during the hospice admission conversation so patients and their caregivers can make informed decisions about hospice.

Methods: Resulting data set from this qualitative study included 60 h of observation and a total of 30 interviews with caregivers, patients and hospice admission nurses. Participants were from a large non-profit hospice; observation settings included: home, hospital and skilled nursing facility.

Results: Four themes were identified: (1) Wide variation in patient knowledge of hospice care prior to the admission conversation, (2) competing expectations and objectives for the admission conversation between patients, caregivers and hospice admission team members, (3) organizational influences around the goals of the admission conversation, (4) importance of integrating the patient and caregiver perspective to improve the quality of admission conversations.

Conclusion: Hospice services provided may be inconsistently explained by hospice personnel and therefore, can be misunderstood by patients and families. With the ubiquitous challenges surrounding hospice admission consults, there is a critical need for complete and accurate information during the admission process.

Practice implications: Providing accurate and pertinent information at the time of the admission consult can help mitigate misinformed expectations of services provided.

Keywords: Care expectations; Communication; Hospice decision-making; Qualitative research.