What does it mean to be diagnosed with heart failure? According to results shared at the American Heart Association’s 10th Scientific Forum on Quality of Care and Outcomes Research in Cardiovascular Disease and Stroke, heart failure patients and their caregivers want to know what to anticipate with the illness, receive more help with symptom relief and have more communication with members of the medical team providing care.
In-depth interviews with patients and caregivers revealed that heart failure patients needed help adjusting to limitations imposed by the illness, anticipating progression of the disease, alleviating physical and emotional symptoms, and fostering communication with their medical team.
“Most teams treating heart failure are medically focused,” said David Bekelman, MD, MPH, lead author of the study and assistant professor of medicine at the University of Colorado Denver School of Medicine. “There is little guidance on the emotional, financial, spiritual and social impact of heart failure. This study helps define a role for palliative care in addressing the needs of heart failure patients and their caregivers.”
Palliative care — care devoted to improving quality of life and reducing suffering for patients with severe, life-threatening illnesses and their families — is often used to help advanced cancer patients.
“Talking to patients and their family caregivers about what to expect in the future of the illness, helping them adjust to the limitations of heart failure by learning what they can do, will help improve the quality of their lives,” Bekelman said.
Researchers conducted semi-structured, in-depth interviews with 33 outpatients with symptomatic heart failure (average age 64; 31 percent women) and 20 caregivers. Thirty percent of patients had mild heart failure, 61 percent had moderate heart failure and 9 percent had severe heart failure. Ninety-five percent of the caregivers were women, the majority of whom were spouses (42 percent) or daughters (32 percent) of the patients.
Researchers asked patients and caregivers what was most distressing about having heart failure, what they would find most helpful and what they perceived as unmet needs regarding symptom management, psychosocial care and planning.
The results suggest that patients and their caregivers live with constant uncertainty. One caregiver said: “Is this going to last a day? A week? Five years? Twenty years? We don’t understand. Where do we go? I’m planning a funeral for someone who might live 20 years from now because I don’t understand.”
“Patients asked for care that supplements disease management provided by the medical team,” Bekelman said. “This could be provided by a cardiac nurse trained in palliative care and familiar with the patient’s condition who collaborates with a multidisciplinary palliative care team,” he said.
The sister of one patient said: “A team approach could help people move forward and deal with the things they need to deal with and have those hard conversations that they are avoiding. I don’t think we are avoiding them, we just haven’t talked about them because they are hard to talk about.”
A patient reported that “someone who is cross-trained in the psychiatric and the physical … the whole package” would be best able to help with additional care needs.
“There are unmet needs in the management of this disease,” Bekelman said. “People need to know what to expect in the future of the illness and require help in adjusting to the limitations of heart failure by learning what steps they can take to improve the quality of their lives.”
The study was funded by the University of Colorado Denver, Hartford/Jahnigen Division of Geriatrics Center of Excellence in Geriatric Medicine, and the Mordecai Palliative Care Pilot Grants Fund.