A lack of awareness among heart failure (HF) patients prevents them accessing palliative care services during the late stages of their disease, indicate US study findings.
Furthermore, this population often confuses palliative care with hospice care, which they frequently reject because of a fear it will prevent access to aggressive, curative treatments, show the findings.
However, despite both of these barriers, the majority of participants in the study who received palliative care reported that it improved their overall hospital experience, remark Maureen Metzger and colleagues from the University of Rochester School of Medicine in New York.
"An explicit and systematic approach to communicating about the referral [to palliative care] would benefit patients and family members," suggest the authors in Heart and Lung.
"Furthermore, clinicians from both HF and palliative care services could work together to define appropriate 'triggers' or indications for referring HF patients for palliative care consults in their settings," they add.
The team conducted 40 semi-structured interviews with 24 HF patients and their family members to assess expectations and experiences of palliative care, and what they feel its role should be. The first interview took place within 48 hours after a consultation with the palliative care team, and the second took place around the time of discharge.
The majority of participants reported being surprised by the palliative consultation, indicating little or no previous knowledge about what palliative care is, and initially reacting with suspicion, caution, and skepticism, report the authors.
However, many of these respondents modified their views over time, with some describing palliative care along the lines of "supportive talking," "all-round help," and "listening" by the time of the second interview.
Many participants equated palliative care with hospice or end-of-life care, and reported that hospice care would not be an option for them because it "hindered aggressive management of HF symptoms," write Metzger et al.
When participants did not define palliative care in this way, continued involvement was welcomed even if they felt that hospice care was not an option.
Almost all participants reported that working with the palliative care team had a positive impact on their hospital experience - making them feel supported and reassured - giving responses such as: "They straightened out a lot of things for us that we really didn't understand before."
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