Comprehensive Symptom Assessment of Patients With End-Stage Heart Failure Referred to Palliative Care

Patients with end-stage heart failure experience a significant symptom burden that is often poorly controlled. Although palliative care can improve symptom management and reduce hospital admissions, many patients still die in acute care settings. The unpredictable course of end-stage heart failure complicates the identification of patients who would benefit from early palliative care referral. To address this challenge, an integrated cardiac supportive care service was developed to engage these patients early, optimise symptom control, and ensure timely access to palliative care.

The aim of this study is to document the symptom burden, using Patient-Reported Outcome Measures, for patients with end-stage heart failure on admission to the cardiac supportive care service.

A prospective observational study was undertaken in a tertiary hospital service in Sydney, Australia between January 2020 and July 2022. Patients were included if they had a recent admission for heart failure or had heart failure with breathlessness or chest pain at rest or on minimal effort. The cardiac supportive care service, consisting of initial home visits and follow-up reviews conducted by a palliative care physician and cardiac nurse practitioner, collected information using the Dyspnoea-12 (D-12) Questionnaire and the Integrated Palliative Care Outcome Scale (IPOS). Symptom scores from these tools were analysed in relation to patient mortality, with Kaplan-Meier survival curves and Cox regression used to assess the association between symptom burden and time to death.

A total of 114 patients were included in this study. Both the IPOS and D-12 scores indicated a substantial and clinically relevant symptom burden for this cohort of patients. High mean scores on the IPOS were observed for weakness (2.6, standard deviation [SD] 1.2), shortness of breath (2.6, SD 1.2), and sore/dry mouth (2.5, SD 1.3). Sore/dry mouth was the most frequent severe or overwhelming symptom (59%). The D-12 showed that descriptors of breathlessness most commonly rated as severe were "My breathing is exhausting" (40%), "My breathing is distressing" (39%), and "I feel short of breath" (38%). Patients with an IPOS score in the highest quartile had an elevated mortality risk. The survival of patients in this cohort was 17.1 months.

Patients with end-stage heart failure experience a substantial and frequently severe symptom burden, including breathlessness, dry mouth, and weakness. This study demonstrates the significant unmet need in this patient population and highlights the opportunity for integrated and proactive palliative care, delivered through a cardiac supportive care service. This model of care can optimise symptom management, facilitate advance care planning, and ensure timely referral to palliative care.