Heart disease is the leading cause of death for adults in the United States. Hospice care for heart disease patients, however, is often underutilized. That means many patients with congestive heart failure or other cardiac conditions are dying alone or in the hospital without comfort care and loved ones by their side.

There are often many barriers that keep heart disease patients from accessing hospice care as the disease progresses. These include the unpredictable trajectory of the disease, symptom burdens such as usage of IV medicines, difficult prognostication by clinicians and timely referrals, and the overestimation of survival which causes patients and families to wait too long before entering hospice.

Heart to Heart Hospice’s specialty program Care Bridge Cardiac Care is designed to meet the unique end-of-life needs of heart patients at home or in a residential facility. Educating patients and their caregivers to “stay ahead” of symptoms helps reduce emergency room visits and hospital admissions. Below we’ll discuss types of heart disease, symptoms, and when to start the conversation about hospice care.

Heart Disease

The main criterion for a patient to be moved to hospice care is a diagnosis of six months or less of life. For cardiac patients, there is more that goes into a hospice referral. Treating end-stage heart disease can be a difficult task for patients and their care teams. Medical teams look for signs such as frequent chest pain, fatigue, angina or difficulty breathing during everyday activities, or other abnormal heart functions that decline over time. 

Some cardiac patients can also experience comorbid conditions that happen alongside heart failure. This may increase the likelihood that a patient will be referred to hospice after a cardiac disease diagnosis. These comorbidities include hypertension, coronary artery disease, diabetes, stroke, cardiogenic brain embolism, infarctions, or the presence of cancer, HIV, COPD, or renal or liver failure. A consultation with a cardiac specialist can help provide a more specific diagnosis.

Below we’ll discuss what hospice care can look like for patients with heart failure or congestive heart failure, as well as how hospice care can benefit cardiac patients and their families. 

Congestive Heart Failure

Left-side or right-side heart failure and congestive heart failure (CHF) are the most frequent diagnoses for cardiac hospice patients. These disorders occur when the heart cannot pump blood to the body at a rate sufficient to meet its needs or can do so only at the cost of high filling pressures. Symptoms stem from two sources: the accumulation of fluid and reduced cardiac output. The accumulation of fluid can result in shortness of breath (while moving or at rest), or fluid accumulation in extremities or abdomen. As the disease progresses, cardiac output can decline which results in low blood pressure and organ dysfunction such as kidney failure.

In the final stages, heart failure is often very unpredictable. These conditions can present multiple symptoms with the frequency and severity varying widely. This can make it difficult to determine life expectancy which can delay a hospice referral. Care (especially hospice care) must be tailored to the individual patient and their needs. 

When to consider hospice for CHF

Because symptoms in the final stages of CHF are unpredictable, it’s important to pay close attention to them. Hospice should be considered for cardiac patients who begin to experience persistent, severe symptoms that make daily activities more difficult and/or who have had recurrent or complicated hospitalizations. 

Some indications that a patient may be a candidate for a hospice referral include:

  • Patient has already received all treatments for their condition and is not a candidate for further medical intervention
  • Patient’s heart is abnormal and they have shortness of breath while resting, functional cardiac decline, and/or significant symptoms of fatigue
  • Patient has advanced cardiac disease or heart failure with frequent angina episodes
  • Patient has decided they do not wish to receive additional treatments
  • Patient has PPS score of 50% or below 
  • Patient has a NYHA Class IV with dyspnea at rest or with minimal exertion
  • Patient experiences frequent ER visits or hospitalizations

Remember that only a physician can determine that a patient has six months or less to live and is therefore eligible for hospice care. However, it is important to remain vigilant and ask the patient’s doctor about hospice when these symptoms occur.

How hospice care helps cardiac patients

Hospice care for patients with end-stage heart failure can take many paths depending on the patient’s specific symptoms. Overall it can look like pain management, relieving specific symptoms, spiritual and emotional support, and/or management of everyday tasks. 

Addressing Physical Symptoms: Care teams can address symptoms such as weakness, fatigue, chest pain, shortness of breath, hypertension, and other common ailments in patients with heart disease.

Pain management: A large part of keeping a patient comfortable in hospice is pain management. Care teams can assess pain levels and find appropriate relief so the patient can enjoy their time as much as possible as the disease progresses.

Providing equipment: In addition to medications and pain management, cardiac patients also need medical equipment like adjustable beds, oxygen, and disposable supplies for wound care or other physical needs.

Emotional and Spiritual Assistance: Hospice programs, such as Heart to Heart, offer a multi-faceted approach to assisting patients and their families with emotional and spiritual well-being. This includes spiritual professionals who align with the patient’s faith, volunteers who provide companionship and social support, and social workers who assist patients and families with the major social, emotional, and practical challenges that come with a terminal diagnosis.

How Heart to Heart helps

As mentioned above, Heart to Heart’s Care Bridge Cardiac Care is a specialty program designed to meet the unique end-of-life needs of heart patients at home or in a residential facility.

Our team members are specially trained to provide the appropriate care:

  • The nurse assesses your physical symptoms and will help you decide the best management approach. You will be provided training on how to use Symptom Tracker Log in the Cardiac Patient/ Caregiver Guide to document changes, so we can help stay ahead of pain and symptoms.
  • The hospice aide assists you with personal care and will teach your family members how to help you. They will instruct you on how to use the Patient and Family Handbook to provide practical guidance and help prepare you for what to expect.
  • The hospice physician works with your physician, as applicable, to help ensure you are receiving optimal therapy. Our staff are trained on the use of home inotropic therapies and the possible disconnection of implantable cardioverter defibrillator (ICD) should that be approved by the physicians overseeing your care.
  • The social worker can help you or your loved ones access community resources, including information on advance directives and assisting with future plans.
  • The spiritual care coordinator provides spiritual support and can involve your personal clergy.
  • Volunteers offer the gift of their time through companionship. They can help capture memories in the Memory Journal or help write down last wishes or special messages.

In addition to the care team, Care Bridge Cardiac Care provides:

  • Medications that relate to your illness and promote comfort
  • Durable medical equipment, such as oxygen and electric beds
  • Disposable supplies, such as adult briefs, gloves, and wound supplies

If you want to learn more about the different levels of hospice care for yourself or a family member, you can find a Heart to Heart location near you or refer a loved one to our services.