What is palliative care for heart failure?

Thanks to medical advances in recent decades, people with heart disease now live much longer than in the past. As more people survive heart attacks and other cardiovascular problems, the number of people living with heart failure — when the heart struggles to pump enough blood to meet the body's needs — continues to rise. By 2030, nearly one in 12 people ages 65 to 70 will have heart failure, according to one estimate.

In 2022, leading cardiology organizations published guidelines for managing heart failure. The guidelines include an expanded range of medications that help reduce the need for hospitalization and may also prolong life. They also recommend palliative care for all people with heart failure. Yet only a small percentage receive this type of care.

To explain what palliative care entails and its role in heart failure, we asked two specialists from the Palliative Care & Geriatric Medicine Division at Harvard-affiliated Massachusetts General Hospital: physician Dr. Julia Gallagher and nurse practitioner Christine McCarthy.

Understanding palliative care

Contrary to what many people believe, palliative care is not the same as hospice care. Palliative care can begin as early as the diagnosis of any serious illness. It's provided by a team of physicians, nurses, and other specialists who work collaboratively with the patient's other doctors to provide additional clinical assessments and support. Hospice is reserved for the smaller subset of patients whose illness has progressed to the point where their doctors would not be surprised if they passed away within six months.

"The goal of palliative care is to improve quality of life by addressing all the domains of suffering — not just physical symptoms, but also emotional, psychosocial, and spiritual issues," says Dr. Gallagher. Even with excellent medical management of heart failure, patients may feel worried, anxious, or depressed because the progression of heart failure is often unpredictable. Identifying and treating anxiety and depression improves quality of life in patients. Equally important is identifying caregiver stress and worry, which allows members of the palliative care team to support that individual along with the patient. Palliative care also includes talking with patients about their personal goals and what matters most to them, which can help guide their care as the illness progresses.

Preparing for what's next

Often, people with heart failure feel much better after a brief hospitalization early in the disease, and may recover to their prior level of function, says McCarthy. "But there is no cure for most cases of heart failure. Instead, there's usually a progressive decline, with repeated hospitalizations, which is rarely talked about," she says. Being more transparent about the unpredictable trajectory of heart failure can help people understand what lies ahead and how to plan for the uncertainty.

When symptoms suddenly worsen again, going to the emergency room and being admitted back into the hospital may seem like the easiest thing to do. However, it may be possible to manage the situation at home. For some people, receiving hospital-level care at home may be an option (see "Hospital at home: A movement whose time has come" in the May 2023 Heart Letter). There are many advantages to home-based care, including avoiding infections and spending more time with family.

Clarity about possible complications

A palliative care approach helps people understand the benefits and risks of different tests and therapies, including receiving implanted cardiac devices. "As an example, what does it really mean to be at risk for bleeding or a blood clot? We explain what might happen, ranging from needing frequent blood draws to possible serious complications, such as a stroke that could leave them unable to communicate," says McCarthy.

"We focus on you as an individual and how you're feeling, treating your symptoms, helping to maximize your medical management, and working toward making every day as good as possible," says Dr. Gallagher.

You can request palliative care, which is covered by Medicare and most health insurance, at any point along the trajectory of a serious illness. For people with heart failure, a palliative care consultation is available during a hospitalization. It's also provided through some outpatient clinics as well as home-based palliative care programs, says Dr. Gallagher.

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