Taking Heart Disease to Heart

Capital Caring Health Plays Key Role in National Initiative

Each year, more Americans die from heart disease than any other condition, including cancer. Heart disease is also a leading cause for hospitalization: Patients with congestive heart failure (CHF) alone account for more than 1 million inpatient admissions annually.

Yet many of those hospital stays could have been prevented—and many of those patients could have lived longer and better lives—through palliative/advanced illness and hospice care delivered directly in the home. 

With hospice’s focus on symptom and pain management, supportive and spiritual care, the specialty can reduce 911 calls, emergency room visits, and inpatient stays, even as it improves the quality of life for end-stage heart failure patients. In fact, one study shows that CHF patients under hospice care have a mean survival of 402 days versus 321 for non-hospice patients.*

But the sad fact is that few CHF patients ever receive the benefit of hospice care. Research reveals that only 5 percent of end-stage CHF patients covered by Medicare are referred to hospice or palliative care after hospitalization. As a result, thousands of end-stage cardiovascular patients nationwide are missing out on the physical comfort and emotional solace palliative/hospice care can provide.

That’s why the National Partnership for Healthcare and Hospice Innovation (NPHI)—an association of non-profit hospices dedicated to helping people live fully through the end of life is launching the Advanced Cardiac Care (ACC) Initiative. And Capital Caring Health, a founding member of NPHI, is playing a leading role based upon its expertise, experience, and stature in the field.

The Need is Now

While the issue of advanced cardiac disease deserves attention at any time, the initiative could not be more timely given the triple threat posed by:

  • COVID-19: One of the most serious underlying conditions affecting the outcome for hospitalized coronavirus patients is heart disease, including Congestive Heart Failure. In fact, hospitalized COVID-19 patients with cardiovascular disease are twice as likely to die as those without the complication.
  • Growing Prevalence: Already the leading cause of mortality in the US, heart disease is responsible for one out of every four deaths, with more than 655,000 Americans lost every year. Due to increases in obesity, diabetes, high blood pressure, high cholesterol—and growing numbers of older adults—the incidence of cardiovascular disease continues to rise.
  • Disparities in Care: Although heart disease affects all Americans across the board, it can hit African Americans especially hard. As a group, African Americans are often diagnosed at a later stage, with more advanced and complicated conditions, and a poorer prognosis, often the result of poor or delayed access to the care they need.

There’s another, even broader, issue that impacts these patients and others that the Initiative hopes to resolve: low overall awareness, understanding, and use of both hospice and advanced illness/palliative care for all diseases. As an example, hospice admissions are particularly low among certain underserved, minority populations such as African Americans, Latino, and the LGBTQ community, for reasons that include historical and cultural factors. And much of the population isn’t aware that advanced illness/palliative care can manage symptoms even while curative care continues.

Yet, despite an initial lack of understanding, once a family member experiences palliative or hospice care, their perception changes dramatically with most saying they wish they had known about the service sooner.

The challenge is to raise community awareness of all that advanced illness, palliative, and hospice care offers, and of the critical difference it can make to patients with end-stage cardiac disease and their families.

Changing Attitudes, A Call to Action

The Advanced Cardiac Care Initiative will examine the reasons behind the low utilization of such a valuable service, and recommend actions to improve awareness, access, use, and the broader issue of disparity in care.

The Initiative is also releasing a guide—The Patient and Caregivers Handbook—for those living with CHF or newly diagnosed, featuring practical information and tools to safely manage symptoms at home. The latter is often a challenging and burdensome task for patients and families, as advanced cardiac disease is usually accompanied by a number of serious symptoms. These include shortness of breath, major fatigue, persistent cough, edema (swelling, usually in the legs and ankles), chest pain, loss of appetite/nausea, and depression and anxiety…all issues that palliative and advanced care is uniquely qualified to address.

The Handbook features sections on understanding heart failure, symptom management and self-care, and a review of medications and diet. Experts also created The Monitoring Symptoms Chart and My Action Plan—What to Do When I Feel…as a guide to handle specific issues at home, when to contact a member of your care team—such as a nurse or your doctor—or seek emergency care.

NPHI experts have also developed materials—to be widely shared—to aid physicians. Physician-directed guidelines include evidenced-based information on when cardiologists, primary care providers, and others should consider palliative and/or hospice care. Studies show the greatest benefit comes when patients spend at least two to three months in hospice care; the initial Medicare coverage period is for six months.

Lastly, the ACC Initiative will be widely publicized to raise public awareness nationwide of the scope and quality of care that hospice provides for advanced cardiac care patients. Capital Caring Health currently provides care and support to many CHF patients and their families, witnessing firsthand the tremendous difference it makes. So we’ll be working with the media in the communities we serve to spread the word, too.

Heart to Heart

This Initiative will take on a growing problem: Improving the care of end-stage advanced cardiac patients. By increasing awareness of palliative/hospice’s care, support, and symptom management provided safely at home, the focus can return to what matters most to patients and families: spending quality, meaningful time with loved ones at the end of life. That’s what all of us—NPHI and Capital Caring Health—want for everyone.