Hospice Care Experiences Among Cancer Patients and Their Caregivers

Journal of General Internal Medicine (2021)Cite this article

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.

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Funding

The data collection and analysis on which this publication is based was sponsored under contract numbers HHSM-500-2016-00022G and 75FCMC19F0026, entitled, “National Implementation of the CAHPS Hospice Survey,” funded by the Centers for Medicare and Medicaid Services, Department of Health and Human Services. The content of this publication neither necessarily reflect the views or policies of the Department of Health and Human Services nor does the mention of trade names, commercial products, or organizations imply endorsement by the US Government. The authors assume full responsibility for the accuracy and completeness of the ideas presented.

Author information

Affiliations

  1. RAND Corporation, Santa Monica, CA, USA

    Layla Parast PhD, Anagha A. Tolpadi MS & Marc N. Elliott PhD

  2. Oregon Health & Science University, Portland, OR, USA

    Joan M. Teno MD, MS

  3. RAND Corporation, Arlington, VA, USA

    Rebecca Anhang Price PhD

Authors
  1. Layla Parast PhD
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  2. Anagha A. Tolpadi MS
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  3. Joan M. Teno MD, MS
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  4. Marc N. Elliott PhD
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  5. Rebecca Anhang Price PhD
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Corresponding author

Correspondence to Layla Parast PhD.

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Parast, L., Tolpadi, A.A., Teno, J.M. et al. Hospice Care Experiences Among Cancer Patients and Their Caregivers. J GEN INTERN MED (2021). https://doi.org/10.1007/s11606-020-06490-x

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KEY WORDS

  • hospice care
  • cancer
  • patient experience
  • pain