Enhancing Quality of Life: Hospice and Palliative Care for Patients with Advanced Heart Disease and Heart Failure

Written by Christina Rama, MD, MMM, Chief Medical Officer

In the United States, approximately 6.7 million adults aged 20 and older are living with heart failure, a condition where the heart is unable to pump blood effectively. Heart failure is a progressive condition, and as it advances, patients may experience more severe symptoms and complications. It’s estimated that about 5% of individuals with heart failure develop advanced disease, characterized by persistent symptoms despite optimal medical therapy. Projections indicate that the prevalence of heart failure will continue to rise, reaching over 8 million by 2030.

Heart disease and heart failure are progressive, chronic conditions that significantly impact patients’ quality of life. While advances in medical treatment can prolong survival, many patients experience persistent symptoms such as fatigue, breathlessness, pain, anxiety and emotional distress. These symptoms can be especially burdensome for those whose disease progresses to advanced stages.

Hospice and palliative care play a crucial role in providing holistic support to patients with advanced heart disease, including heart failure. These services focus on symptom management, emotional well-being and enhancing overall quality of life, particularly as the disease progresses. Unfortunately, many patients do not receive these essential services early enough in their disease course to fully benefit from them.

The Role of Palliative Care in Advanced Heart Disease

There are several misconceptions about palliative care when it comes to treating patients with heart failure. For example, many people believe that palliative care is only for end-of-life. Palliative care is appropriate at any stage of serious illness and can be provided alongside curative or life-prolonging treatments, and helps patients optimize symptom management while continuing appropriate heart disease and/or heart failure therapies. For patients with heart failure, palliative care teams collaborate with cardiologists and primary care providers to address complex symptom burdens, coordinate care and support informed decision-making.

Key aspects of palliative care for heart failure include:

• Symptom Management: Treating dyspnea (shortness of breath), fatigue, pain and fluid retention with medications, dietary adjustments and non-pharmacologic strategies.
• Emotional and Psychological Support: Addressing anxiety, depression and the emotional toll of living with a progressive illness.
• Advance Care Planning: Helping patients and families make informed decisions about treatment preferences, including discussions about defibrillator deactivation, inotropes and ventricular assist devices.
• Care Coordination: Ensuring seamless transitions between hospital, home and skilled nursing facilities.

There is also a misconception that palliative care hastens death. Palliative care does not speed up dying, but rather helps patients live better and longer by improving symptom control, reducing stress and preventing unnecessary or avoidable hospitalizations. Some studies have shown that early palliative care can even extend survival in serious illnesses.

Ideally, palliative care should be introduced early in the disease trajectory to provide comprehensive support, reduce hospitalizations and improve quality of life. Palliative is different from hospice care as palliative care encompasses a much broader scope.

When Does Hospice Become Appropriate?

Hospice care is designed for patients who have a life expectancy of six months or less, if the disease follows its expected course. In the context of heart failure, determining eligibility can be challenging due to the unpredictable nature of the disease progression. However, certain indicators suggest that hospice may be appropriate:

• Frequent Hospitalizations: Multiple emergency room visits or hospital admissions for heart failure exacerbations.
• Refractory Symptoms: Persistent shortness of breath, fatigue and edema despite optimal medical therapy.
• Declining Functional Status: Increasing dependence on assistance with daily activities, such as bathing, dressing and ambulation.
• Poor Response to Treatments: Diminished benefit from diuretics or inotropic therapy.
• Presence of Other Life-Limiting Conditions: Co-existing illnesses such as advanced kidney disease or chronic obstructive pulmonary disease.

Once a patient elects hospice, the focus shifts from disease-modifying treatments to comfort care, with a goal of maximizing quality of life.

How Hospice Supports Patients with Heart Disease

Hospice teams provide interdisciplinary care tailored to the needs of patients and their families. Services include:

• Expert Symptom Control: Managing dyspnea, pain, anxiety and fluid overload with medications and supportive therapies.
• 24/7 Support: Access to nursing and medical care to address urgent needs and prevent unnecessary hospitalizations.
• Emotional and Spiritual Support: Counseling services for patients and families to navigate grief, fears and end-of-life decisions.
• Family Education and Support: Guidance on how to care for a loved one with advanced heart failure at home.

Patients with advanced heart disease and heart failure can greatly benefit from early integration of palliative care and timely transition to hospice when appropriate. By focusing on symptom relief, emotional well-being and quality of life, these services ensure that patients receive compassionate, patient-centered care throughout the disease trajectory. Open conversations with healthcare providers about goals of care and hospice eligibility can help patients and families make informed, meaningful decisions about their care journey.

At AuthoraCare, we offer resources on monitoring advancing illnesses, assistance for caretakers and grief counseling for all ages. If you believe that you or a loved one could benefit from a care consultation, please call 800.588.8879 or visit our website for more information.