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Why Don’t Patients Enroll in Hospice? Can We Do Anything About It?

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Abstract

BACKGROUND

United States hospice organizations aim to provide quality, patient-centered end-of-life care to patients in the last 6 months of life, yet some of these organizations observe that some hospice-eligible patients who are referred to hospice do not initially enroll.

OBJECTIVE

Primary objective: To identify reasons that eligible patients do not enroll in hospice (phase 1). Secondary objective: To identify strategies used by hospice providers to address these reasons (phase 2).

DESIGN

Semi-structured interviews analyzed using content analysis.

PARTICIPANTS

In phase 1, we interviewed 30 patients and/or family members of patients who had a hospice admissions visit, but who did not enroll. In phase 2, we interviewed 19 hospice staff and national experts.

APPROACH

In phase 1, we asked participants to describe the patient's illness, the hospice referral, and why they had not enrolled. We performed a content analysis to characterize their reasons for not enrolling in hospice. In phase 2, we enrolled hospice admissions staff and hospice experts. We asked them to describe how they would respond to each reason (from phase 1) during an admissions visit with a potential new hospice patient. We identified key phrases, and summarized their recommendations.

RESULTS

Reasons that patients hadn’t enrolled fell into three broad categories: patient/family perceptions (e.g., “not ready”), hospice specific issues (e.g., variable definitions of hospice-eligible patients), and systems issues (e.g., concerns about continuity of care). Hospice staff/experts had encountered each reason, and offered strategies at the individual and organizational level for responding.

CONCLUSIONS

In hopes of increasing hospice enrollment among hospice-eligible patients, non-hospice and hospice clinicians may want to adopt some of the strategies used by hospice staff/experts for talking about hospice with patients/families and may want to familiarize themselves with the differences between hospice organizations in their area. Hospices may want to reconsider their admission policies and procedures in light of patients’ and families’ perceptions and concerns.

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Acknowledgements

This work was supported by a grant from the National Institute on Aging (K23 AG19635). We are indebted to the hospice organizations which sent letters to potential participants and to the patients, family members, hospice clinicians, and national hospice leaders who participated.

Conflicts of Interest

None disclosed.

Author information

Authors and Affiliations

  1. Division of Gerontology and Geriatric Medicine, University of Washington, Seattle, WA, USA

    Elizabeth K. Vig MD, MPH & Elizabeth K. Hopley BA

  2. Geriatrics and Extended Care, Veterans Affairs Puget Sound Health Care System, 1660 South Columbian Way (S-182-Ethics), Seattle, WA, 98108, USA

    Elizabeth K. Vig MD, MPH

  3. Department of Bioethics and Humanities, University of Washington, Seattle, WA, USA

    Helene Starks PhD, MPH & Kelly Fryer-Edwards PhD

  4. Department of Health Services, University of Washington, Seattle, WA, USA

    Helene Starks PhD, MPH

  5. Department of Anthropology, University of Washington, Seattle, WA, USA

    Janelle S. Taylor PhD

Authors
  1. Elizabeth K. Vig MD, MPH
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  2. Helene Starks PhD, MPH
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  3. Janelle S. Taylor PhD
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  4. Elizabeth K. Hopley BA
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  5. Kelly Fryer-Edwards PhD
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Corresponding author

Correspondence to Elizabeth K. Vig MD, MPH.

Additional information

This work was supported by the National Institute on Aging (K23 AG19635). This material was presented in part at the Annual Assembly of the American Academy of Hospice and Palliative Medicine in New Orleans, LA in January 2005, and at the Annual Meeting of the Society of General Internal Medicine in Toronto, Ontario, Canada in April 2007.

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Vig, E.K., Starks, H., Taylor, J.S. et al. Why Don’t Patients Enroll in Hospice? Can We Do Anything About It?. J GEN INTERN MED 25, 1009–1019 (2010). https://doi.org/10.1007/s11606-010-1423-9

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  • DOI: https://doi.org/10.1007/s11606-010-1423-9

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