Improving Care Experiences for Patients and Caregivers at End of Life: A Systematic Review

Am J Hosp Palliat Care. 2021 Jan;38(1):84-93. doi: 10.1177/1049909120931468. Epub 2020 Jun 19.


Background: End-of-life care is increasing as the US population ages. Approaches to providing high-quality end-of-life care vary across setting, diseases, and populations. Several data collection tools measure patient and/or caregiver care experiences at end of life and can be used for quality improvement. Previous reviews examined palliative care improvements or available measures but none explicitly on improving care experiences. We reviewed literature on improving patient and/or caregiver end-of-life care experiences.

Design: We searched U.S. English-language peer-reviewed and grey literature after 2000 on adult end-of-life care experiences. We followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines for quantitative studies, Enhancing Transparency in Reporting the Synthesis of Qualitative Research approach for qualitative studies, and Assessment of Multiple Systematic Reviews tool for the literature reviews.

Setting: Palliative and hospice care.

Population: Full-text abstraction of 84 articles, identifying 16 articles.

Measures: Patient and/or caregiver end-of-life care experiences (captured through administrative data or direct report).

Results: Articles examined palliative care experiences across settings; none studied hospice care experiences. Patients and/or caregivers assessed overall care experiences, clinician-staff interactions, provider communication, respect and trust, timeliness of care, spiritual support, caregiver knowledge of care plans, or bereavement support. Efforts aimed at improving end-of-life care experiences are limited and show mixed results.

Conclusions: Literature on improving patient and/or caregiver end-of-life care experiences is emerging and focused on palliative care experiences. Evidence on improving hospice care experiences is lacking. Research on strategies for improving end-of-life care experiences should go beyond overall care experiences to include specific aspects of palliative and hospice care experiences.

Keywords: end of life; hospice care; improving quality; palliative care; patient experience; patient satisfaction.

Publication types

  • Systematic Review

MeSH terms

  • Adult
  • Caregivers
  • Death
  • Hospice Care*
  • Humans
  • Palliative Care
  • Quality Improvement
  • Terminal Care*