Abstract
Background/Aims Hospice care is widely used at the end of life yet it remains stigmatized and feared. Current research on the transition to hospice overlooks the dimension of patient choice and the symbolic importance of hospice to patients and families. Understanding the transition from the point of view of patients and family members is critical in increasing use of hospice care and decreasing “late referrals.”
Methods This research draws on in-depth retrospective interviews with 18 patients in home hospice care in the United States and 11 family members/caregivers.
Results Examining narratives about transitioning to hospice reveals two insights. First, the referral is one highly variable element of a more complex process better conceptualized as a transition. Transitions may be (1) provider-driven or (2) patient/family-driven. Some patients and families play a very active role in this transition, including self-referring to hospice. Second, the style of provider referrals is commonly remembered as being very negative. Negative referrals tend to draw on a cultural meaning of hospice as “giving up” or “choosing dying”, while positive referrals conceptualize hospice as a medical and psychosocial strategy that is advantageous for patients and families.
Conclusions Understanding referral as a discrete, but critical component of a longer strategy for transitioning to hospice care, should lead providers to carefully plan when and how they present hospice care to patients. Understanding the spectrum of patient and family perspectives can also improve providers’ ability to customize their referrals and the likelihood that patients will transition to hospice care if and when it would benefit them.
