Bereaved family members-reported distressing symptoms in terminally ill patients with heart disease

Family members' (FMs) perceptions play a crucial role in understanding distressing symptoms in terminally ill patients. However, research on FM-reported physical distress and the corresponding care settings and caregiver burdens remain sparse across the spectrum of heart diseases.

This retrospective study utilized a nationwide mortality follow-up survey completed by bereaved FMs of patients with heart failure, ischemic heart disease (IHD), or other heart diseases. FMs retrospectively rated distress from 11 patient symptoms experienced 1 week prior to death using the Memorial Symptom Assessment Scale-Short Form (5-point scale). Patient and FMs profiles were compared among three groups according to the number of symptoms rated "a little bit" or more distressing: minimal (0 symptoms), mild-moderate (1-5 symptoms), and severe physical distress (6-11 symptoms).

Among 5003 patients (61.2 % women; mean age, 86.7 ± 9.7 years), 23.3 %, 44.1 %, and 32.6 % were classified as having minimal, mild-moderate, and severe physical distress, respectively. The most frequent FM-reported symptom was feeling drowsy (52.8 %). Patients with severe distress were more likely to have received care at hospitals. The proportion of patients perceived as receiving palliative care was 5.8 %, 11.2 %, and 16.1 % for those with minimal, mild-moderate, and severe distress, respectively. FMs of patients with severe distress reported more frequent caregiving and worse physical and psychological conditions. The proportion of patients with minimal physical distress was consistently low regardless of primary diagnosis (heart failure, 20.6 %; IHD, 27.3 %; other diseases, 23.8 %).

A substantial proportion of FMs reported terminally ill patients with heart disease experiencing physical distress. Nevertheless, the proportion of patients perceived as receiving palliative care was low. FMs of those with severe physical distress reported greater caregiving burden. These findings highlight an unmet need for more comprehensive palliative interventions for both patients and their families in advanced stages of heart disease.