The Lived Experience of Physical Separation for Hospice Patients and Families amid COVID-19

Karla T Washington; Amy Piontek; JoAnn Jabbari; Jacquelyn J Benson; George Demiris; Paul E Tatum; Debra Parker Oliver

doi:10.1016/j.jpainsymman.2022.02.019

The Lived Experience of Physical Separation for Hospice Patients and Families amid COVID-19

J Pain Symptom Manage. 2022 Jun;63(6):971-979. doi: 10.1016/j.jpainsymman.2022.02.019. Epub 2022 Feb 19.

Authors

Karla T Washington¹, Amy Piontek², JoAnn Jabbari³, Jacquelyn J Benson⁴, George Demiris⁵, Paul E Tatum⁴, Debra Parker Oliver⁶

Affiliations

¹ Washington University in St. Louis, Department of Medicine, Division of Palliative Medicine (K.T.W., J.J.B., P.E.T., D.P.O.), St. Louis, Missouri, USA. Electronic address: kwashington@wustl.edu.
² Goldfarb School of Nursing at Barnes-Jewish College (A.P., J.J., D.P.O.), St. Louis, Missouri, USA.
³ Goldfarb School of Nursing at Barnes-Jewish College (A.P., J.J., D.P.O.), St. Louis, Missouri, USA; The Graduate School at Washington University in St. Louis (J.J.), St. Louis, Missouri, USA.
⁴ Washington University in St. Louis, Department of Medicine, Division of Palliative Medicine (K.T.W., J.J.B., P.E.T., D.P.O.), St. Louis, Missouri, USA.
⁵ Department of Biobehavioral Health Sciences, University of Pennsylvania School of Nursing (G.D.), Philadelphia, Pennsylvania, USA; Department of Biostatistics, Epidemiology and Informatics, University of Pennsylvania Perelman School of Medicine (G.D.), Philadelphia, Pennsylvania, USA.
⁶ Washington University in St. Louis, Department of Medicine, Division of Palliative Medicine (K.T.W., J.J.B., P.E.T., D.P.O.), St. Louis, Missouri, USA; Goldfarb School of Nursing at Barnes-Jewish College (A.P., J.J., D.P.O.), St. Louis, Missouri, USA.

Abstract

Context: Many hospice patients were physically separated from family members and healthcare professionals during the early COVID-19 pandemic.

Objectives: Researchers sought to describe the lived experience of physical separation for hospice patients and family caregivers who adhered to public health guidelines intended to limit the transmission of COVID-19 in the spring of 2020.

Methods: Researchers performed a secondary analysis of qualitative data collected during a multi-site clinical trial of an intervention that incorporated family caregivers into care plan reviews during biweekly hospice interdisciplinary team meetings. Twenty-eight adult family caregivers of hospice patients with cancer participated in at least one care plan review between March 7, 2020 and June 10, 2020. The final analytic dataset included the transcribed content of 60 care plan reviews, which were analyzed via reflexive thematic analysis.

Results: Hospice patients and their family caregivers experienced physical separation as interrupted care that resulted in the potential for unmet informational, functional, and social and emotional needs. Connection strategies employed to adapt to care interruptions and address patient and caregiver needs were not consistently effective.

Conclusion: Inclusive, innovative connection strategies are needed to ensure that high-quality end-of-life care is provided to hospice patients and their family caregivers when physical presence must be limited.

Keywords: COVID-19; Caregivers; family; hospices; patients; social isolation.

Publication types

Research Support, N.I.H., Extramural

MeSH terms

Adult
COVID-19* / epidemiology
Caregivers* / psychology
Clinical Trials as Topic
Hospice Care*
Humans
Multicenter Studies as Topic
Pandemics
Patients* / psychology
Physical Distancing*
Qualitative Research