provider difficulties in beginning the conversation, disease-specific
unpredictability and organizational issues. 8 These factors have
contributed to few HF patients and caregivers benefiting from
palliative and end-of-life services compared to patients with cancer
despite a greater number of HF-related deaths.2,9,10
A widespread lack of understanding of supportive care by clinicians
exists, including the care of HF patients.11 Clinicians lack
confidence in initiating the conversations and are hesitant to suggest
palliative care due to misconceptions of the role of palliative
services in HF.5,12 Often clinicians place the onus for the discussion
of end-of-life goals and needs for supportive services on patients
and caregivers with the assumption that the conversation will
occur when the family is “ready.”13 This assumption is a doubleedged
sword in HF since, as mentioned above, patients and caregivers
may not fully comprehend the severity of HF or that the final
outcome is death3; both of which impede their ability to articulate
“readiness” to accept supportive services or discuss end-of-life
plans. Ultimately, this chicken-or-egg scenario leads to most palliative
care or hospice referrals in HF occurring when death is
imminent despite the known benefits of early referral.
Patients and caregivers unrealistic expectations of the disease
trajectory and lack of recognition of heart failure as a terminal
diagnosis can have a significant impact on end-of-life care.3 This
gap in caregiver knowledge may interfere with the acceptance of
supportive and end-of-life services that could be valuable to
improve physical and psychosocial outcomes for patients in Stage D
HF. In fact, caregiver denial of terminality was shown to lead to
increased inpatient treatment during inehome hospice resulting in
patients dying in the hospital rather than home as they had planned.
14 Therefore, this study aimed to assess how caregiver perceptions
of HF severity and terminality impacted initiation and
utilization of these supportive services in Stage D HF.
Purpose
This study describes family caregivers of advanced HF patients
(those with a