Spiritual distress: symptoms, quality of life and hospital utilisation in home-based palliative care

Correspondence to Dr Huong Q Nguyen, Kaiser Permanente Southern California Research and Evaluation, Pasadena, California, USA; [email protected]

Key messages

What was already known?

• Spiritual distress negatively impacts seriously ill patients.

What are the new findings?

• Spiritual distress is common in home-based palliative care and is associated with symptom burden and poor mental well-being, but not with hospital utilisation.

What is their significance?

• Clinical: Spiritual distress should be addressed in clinical settings.

• Research: Methods for assessment and management of spiritual distress need to be established.

Introduction

Spiritual care is a fundamental component of providing quality, patient-centred and family-centred palliative care across the continuum of serious illness.^1–4 Astrow et al ⁵ found that in a large ethnically, linguistically and religiously diverse sample of patients receiving care in a haematology-oncology clinic, nearly 80% reported at least one spiritual need. High spiritual needs are associated with less satisfaction with care and lower perception of quality of care⁵ and religiousness, and desire for life extending treatments in patients with cancer.⁶ Spiritual distress (SD) defined as ‘the impaired ability to experience and integrate meaning and purpose in life…’,⁷ has been associated with worse quality of life, adjustment, well-being, illness acceptance and late enrolment in hospice in patients with serious illness.^{3 4 8–11} Use of a brief spiritual screening question may be useful in identifying patients in need of spiritual care referrals.^{3 7} In this paper, we used a validated, single question screener for SD to describe the prevalence of SD in a large cohort of seriously ill patients at admission to home-based palliative care (HBPC) and examined the associations between SD with symptom burden, quality of life and hospital-based utilisation up to 6 months after admission to HBPC.

Methods

Design

Data for this prospective cohort study were drawn from a pragmatic, non-inferiority cluster randomised trial (HomePal) to compare two models of HBPC that was terminated early in January 2020.^{12 13} Only patients and family caregivers recruited from 11 of the 14 sites from Kaiser Permanente Southern California were included in this analysis. Participant enrolment occurred from 7 January 2019 to 31 January 2020 with follow-up data collection ending on 7 October 2020.

Population

We included HBPC patients who were 18 and older, living with...