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.

Keywords

palliative care hospice decision-making qualitative research complexity uncertainty health services sociology

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