“I don’t think people realize how much my heart problem takes out of me. I can’t do the simplest tasks without getting out of breath, and sleeping comfortably at night is impossible.”
-72-year-old with advanced heart failure
Written by: Terri Maxwell Ph.D., APRN, Chief Clinical Officer
February marks American Heart Month, a great time to learn from the American Heart Association how palliative care helps patients and families face the burden of heart disease.
It’s estimated that over five million Americans have heart disease, and the number of new cases continues to rise as the population ages. Despite improvements in therapy, heart disease has been the leading cause of death in the United States for decades.1 Among elderly people admitted to the hospital for heart failure, the one-year mortality is over 60 percent — higher than most cancers.2
Those with end-stage heart disease experience a number of disabling symptoms, including severe fatigue and lack of energy, shortness of breath and pain. Emotional issues are also paramount, including anxiety, depression, and sadness. Despite the devastating effect heart failure has on quality of life for patients and their caregivers, hospice and palliative care are both underutilized in this population. In fact, heart disease represents fewer than 15 percent of all admissions to hospice, compared to patients with cancer, which accounts for 37 percent of hospice enrollments.3
Recognizing the benefits of palliative care for those with advanced heart disease, a number of professional organizations, including the American College of Cardiology Foundation and American Heart Association, have developed guidelines that integrate palliative care into the care of patients with advanced heart failure.
Despite the growing recognition of the benefits of hospice and palliative care for those with advanced heart disease, a number of barriers stand in the way of access to these programs.
First, the inability to accurately predict prognosis, as well as patients’ preference for resuscitation compared to those with cancer, are important barriers to hospice referral. Also, guidelines developed for determining hospice eligibility don’t adequately predict short-term prognosis, so patients may be on hospice for an extended time, sometimes leading to discharge from the program.
In addition, physicians may be reluctant to engage in end-of-life discussions with their patients or may lack the skills to do so. In fact, there is a notable lack of advance care planning between heart failure patients and their providers regarding end-of-life care.
Because of the unpredictable nature of the disease trajectory and poor understanding among patients and their families about the disease itself, cardiac disease is often unrecognized as a terminal condition until very late in the disease course, if at all. There also remains a misconception among many healthcare providers that hospice and palliative care are primarily for cancer patients, and they are unaware of the benefits for patients with heart failure.
Finally, despite the support for palliative care, offering it usually remains secondary to proposing new therapies or devices in the hopes of prolonging life, leading to palliative care having a low profile at national cardiology meetings.
Fortunately, new data-driven approaches for patient identification and innovative new care models are improving outcomes for persons with advanced heart disease. Predictive models that utilize claims data — such as the one used by Turn-Key Health — identify patients who would benefit from palliative care. This decreases reliance on clinician referrals that often occur late, or not at all.
New population health community-based palliative care programs help patients and families to better understand their prognosis and make treatment decisions in keeping with their goals. These palliative clinicians are also experts at relieving symptoms and lessening psycho-social and spiritual suffering.
In honor of American Heart Month, we hope that these emerging new population health approaches will foster the more widespread delivery of palliative care to lessen the burden on patients with heart disease and those who love them. Doing so will improve quality-of-life outcomes for patients and families, and reduce hospitalizations and costs.