Does Palliative Care Utilization Facilitate Conversion to Hospice Care? A Qualitative Study of the “Soft No”

Abstract

Background: Facilitating patient conversion to hospice at end of life is a prominent clinical concern. Enrollment in outpatient palliative care services is often assumed to encourage seamless transition to hospice care, but this has not been demonstrated. Moreover, decisions to convert from palliative care to hospice are generally treated as dichotomous, thus hampering our ability to understand decision processes. Objective: To examine medical decision-making among patients who are prospectively evaluating whether to convert from palliative care to hospice. Design: Qualitative case study, using in-depth interviews and constant comparative method. Setting/Patients: Terminally ill patients currently enrolled in outpatient palliative care services (N = 26) and their caregivers (N = 16), selected purposely for maximum variation in condition and personal background. Measurements: Themes identified in qualitative in-depth interviews. Results: Patients rarely refused hospice outright but more often postponed using a “soft no,” in which they neither accepted nor overtly refused hospice. Justifications patients and caregivers offered for why hospice was not needed (yet) appeared in these themes: (1) not seeing the value added of hospice, (2) assuming the timing is premature, and (3) relying on extensive health-related support networks that justify or endorse continuation of active care. Conclusions: Despite assumptions to the contrary, benefits associated with utilization of outpatient palliative care services have the potential to incentivize the delay of hospice in some cases. Clinical interactions with outpatient palliative care patients should consider the influence of these broad social support systems when discussing hospice options.

Embodied decisions unfolding over time: a meta-ethnography systematic review of people with cancer’s reasons for delaying or declining end-of-life care

“…Studies took place in the United States [ 14 , 15 , 18 , 19 , 21 ], UK [ 16 , 22 ], New Zealand [ 17 ] and Taiwan [ 20 ]. Participants were recruited to the studies through oncology and palliative care hospital settings, palliative care outpatient clinics, general practice as well as community workers and groups, newsletters, and notice boards.…”

“…All studies included patients and some also included family members [ 16 , 18 , 19 , 21 ]. We focused on the patient perspectives and supplemented these with family perspectives where no patient perspective was offered.…”

“…Some studies also included data from health care professionals (HCPs) which we did not include in our review [ 14 , 17 , 20 , 22 ]. Given the small number of eligible studies, studies were also included if the participants were primarily people who had cancer (over 75% of participants) [ 18 , 21 ]. We did not include the first order content in our analysis when the data pertained to a non-cancer patient.…”

“… Semi-structured interviews 15 patients with advanced cancer in oncology or hospice unit Thematic analysis The decisions for not choosing palliative care as part of advance care planning discussions are driven by: patients weighing others’ benefits more important than benefits to themselves; trying to pacify the families; being a role model for children by facing the challenge of active treatment. Spencer et al 2020 US [ 21 ] To further understandings of how hospice decisions unfold over time, consistent with recent calls for studying the complexity involved in end-of-life care. Semi-structured interviews 20 non-end-of-life care patients Abductive framework analysis with a phenomenological perspective Propose the term a “soft no,” in which patients neither accept nor overtly refuse hospice.…”

The many faces of medical treatment imperatives: Biopower and the cultural authority of medicine in late‐life treatment decisions in the United States

“…We used these guiding issues from literature to develop codes, memos, and ideas about evidentiary bases about how patients identified, resisted, opted into, and negotiated treatment imperatives. While we published elsewhere on the ways that people navigated their medical decision‐making (Spencer et al, 2020), it was in this multifaceted context that the unexplored conceptual breadth and depth of the treatment imperative experience became evident and thus the focus of our present analysis.…”