NATIONAL HARBOR, MD — More often than not, family members caring for loved ones with advanced heart failure don't understand how serious the disease is, have unrealistic expectations about the patient's chances for survival, and even may be looking forward to recovery, suggests a study based on interviews of 80 such caregivers. Such misunderstandings could complicate the later bereavement process and help explain why palliative care and end-of-life-planning services are underused for patients with advanced heart failure, propose researchers reporting here at the Heart Failure Society of America (HFSA) 2015 Scientific Meeting.
At structured interviews, fully two-thirds of the 80 at-home primary caregivers of patients with advanced heart failure did not comprehend the severity of the disease or understand that it was terminal, according to lead author Dr Judith E Hupcey (Pennsylvania State University, University Park).
"Where do you see your loved one in a year?" was among the questions caregivers were asked, Hupcey noted for heartwire from Medscape. Often the reply was along the lines of, "I expect in the next year he will be doing the things he was planning before he had heart failure" or "he'll be back to his normal self."
Of caregivers of patients with a projected survival of <1 year, as measured by the Seattle Heart Failure Model, 71% had major shortfalls in understanding the nature of heart failure and its severity; it was 61% of caregivers when the patient had a projected survival <2 years. There was no understanding that the patient's condition was terminal in 76% and 52% of caregivers, respectively. Survival after enrollment in the study averaged 8 months.
The caregiver was a spouse in 65% of cases and an adult son or daughter in most of the remainder; the mean age was 59, and about 80% were women. Caregivers had to have normal cognitive function to be in the study, according to Hupcey.
End-of-life discussions with patients and caregivers don't happen as often or as timely as they should, she said. Before this study, "I think we blamed the healthcare providers for that." But it's not all the providers—now "we know that many patients and caregivers refuse palliative-care services and don't want the [other end-of-life-planning] services that are offered."
Often patients would report that "because they're feeling better after being diuresed, they don't have heart failure anymore." And even caregivers who put some focus on the severity of the patient's disease and accepted that the prognosis was poor often attributed that not to the heart failure per se but rather to comorbid chronic diseases like diabetes or kidney failure.
Even the patients themselves often misunderstood their own prognosis, and that may have influenced the caregivers' perceptions. Some patients with advanced HF, asked where they saw themselves in a year, replied, "I'll be back to work."
Hupcey had no relevant financial relationships.
Heartwire from Medscape © 2015 Medscape, LLC
Cite this: Caregivers of HF Patients Can Have Unrealistic Hopes for Prognosis - Medscape - Sep 28, 2015.