Hospice Care Experiences Among Cancer Patients and Their Caregivers

Abstract

Background: Little is known about the current quality of care for hospice cancer patients and how it varies across hospice programs in the USA.

Objective: To examine hospice care experiences among decedents with a primary cancer diagnosis and their family caregivers, comparing quality across settings of hospice care.

Design: We analyzed data from the Consumer Assessment of Healthcare Providers and Systems Hospice Survey (32% response rate). Top-box outcomes (0-100) were calculated overall and by care setting, adjusting for survey mode and patient case mix.

Participants: Two hundred seventeen thousand five hundred ninety-six caregiver respondents whose family member had a primary cancer diagnosis and died in 2017 or 2018 while receiving hospice care from 2,890 hospices nationwide.

Main measures: Outcomes (0-100 scale) included 8 National Quality Forum-endorsed quality measures, as well as responses to 4 survey questions assessing whether needs were met for specific symptoms (pain, dyspnea, constipation, anxiety/sadness).

Key results: Quality measure scores ranged from 74.9 (Getting Hospice Care Training measure) to 89.5 (Treating Family Member with Respect measure). The overall score for Getting Help for Symptoms was 75.1 with item scores within this measure ranging from 60.6 (getting needed help for feelings of anxiety or sadness) to 84.5 (getting needed help for pain). Measure scores varied significantly across settings and differences were large in magnitude, with caregivers of decedents who received care in a nursing home (NH) or assisted living facility (ALF) setting consistently reporting poorer quality of care.

Conclusions: Important opportunities exist to improve hospice care for symptom palliation and providing training for caregivers when their family members are at home or in an ALF setting. Efforts to improve care for cancer patients in the NH and ALF setting are especially needed.

Keywords: cancer; hospice care; pain; patient experience.

Figure 1

Getting help for symptoms, by setting. Notes: Getting help for symptoms scores (and corresponding 95% confidence intervals) are on a 0–100 scale and adjusted for mode and differences in decedent age, payer for hospice care, and length of final episode of hospice care, respondent age, education, relationship to caregiver, language spoke at home, and survey language, and response percentile (reflecting the lag time between patient death and survey response); scores are calculated only among decedents who experienced the given symptom, as reported by the caregiver.