Key Changes in Palliative Care Delivery and Patient and Family Experiences in the 5 Years since the COVID-19 Pandemic Onset: A Systematic Review

Abstract

Background:

Palliative care improves quality of life for patients and families. More research is needed to understand how care delivery and patient and family experiences have changed in the 5 years since the COVID-19 pandemic onset.

Objective:

To systematically review the delivery of palliative care and patient and family experiences in palliative care since the COVID-19 pandemic onset.

Methods:

The search examined articles indexed in Medline, Science Direct, and Scopus, published between January 2020 and April 2025. Articles were included if they were peer-reviewed and included hospital and home-based palliative care for pediatric and adult patients and their families and examined changes in (a) patient experiences, (b) family experiences, or (c) aspects of service delivery regarding palliative care since the COVID-19 pandemic onset.

Results:

Of 529 abstracts screened, 10 met the inclusion criteria for review. The most common patient and family experiences among the studies included caregiver social isolation (80%) and increased distress (70%). Among the studies, delivery changes included precautions on infection control (100%) and telehealth (90%). Most studies focused on adults (70.0%), typically cancer or COVID-19 populations (20% and 30%, respectively), and heterogeneous, seriously ill populations (50%). No study commented on the impact of COVID-19 using data collected after 2022, 10% were prospective, and 20% of studies reported on participants’ race or ethnicity.

Conclusions:

This systematic review shows that since the COVID-19 pandemic onset, studies of palliative care programs have found that caregivers experience more distress and isolation, and programs have modified infection control precautions and increased the availability of telehealth. Implications for the future of family-centered palliative care are discussed.