Advanced Heart Disease & Hospice Care

By: Marisol Ramirez, RN

Every stage of life is important. Clinicians understand how to care for late-stage heart failure patients. Every minute of life is valued and deeply treasured, emphasizing our utmost commitment to providing the best expert care in the last moments of life that matter most. It is a great honor to be a part of vulnerable moments, provide expert care, and provide emotional support and guidance when deciding the best options for your loved one. Have you or someone you love been diagnosed with advanced heart disease? Has a physician suggested hospice care, but you are just not sure where to even begin searching for answers? In honor of World Heart Day, we’ve put together this guide to bring you clear answers that will allow you to make the best-informed decisions for you or your loved one.

What is hospice?

Hospice care is specifically designed with the patient and family in mind. Ensuring patients are safe in their homes, comfortable, and pain-free is essential. Comprehensive hospice services are essential to satisfy the patients’ and their families’ most pressing needs.

You may find yourself in need of expert clinicians and skilled nurses to help you manage your heart failure, help with pain control, and preserve a sense of normalcy during the last months of life. Know that your hospice team is here for you and your loved ones.

When is the right time to ask about hospice?

Patients on hospice services have less than six months of life remaining. This may be the most difficult decision you will ever need to make, but you do not have to go through the process alone. Invite your family and special people in your life to provide support and be present when discussing options with your physician.

Your hospice team can support you in educating your loved ones on the disease process and can provide support during this time.

Signs of end-stage heart failure

Recognizing the signs and symptoms of end-stage heart failure is critical. According to the American Heart Association, end-stage heart failure is when most treatments may no longer work and when the patient experiences more frequent symptoms.

Frequent and recurring chest pain

Frequent and recurring angina, or chest pain, is common at end-stage heart failure. It may become more difficult to breathe, in addition to feeling short of breath with minimal exertion or at rest. Your doctor may recommend supplemental oxygen to alleviate the strain, or medications to relieve chest pains or heart palpitations.

Significant symptoms of fatigue and functional decline

According to a Heart.org study, medical records of patients with end-stage heart failure tend to have symptoms very similar to patients with cancer:

• Nausea
• Cachexia, or extreme weight loss and muscle wasting
• Constipation or irregular bowel movements

Other common symptoms to note that may affect daily functions:

• Ankle swelling
• Persistent cough
• Nocturia or frequent nighttime urination
• Physical activity or work restrictions

In addition to the cardiac insufficiency, these symptoms may cause patients to feel overly fatigued and with less energy to complete their normal functions of daily living. Patients may require more hands-on care from their caregivers or family at this time. This may include performing tasks such as bathing, dressing, and grooming care.

The patient does not consent to further medical interventions by personal choice

There may come a point – even before the last six months of life prognosis – in which patients may come to terms with their end-stage heart failure diagnosis. They may have already decided that they will not consent to further medical interventions if it causes more pain or a poor quality of life. The patient’s loved ones must be present with kindness, support, and respect for the patient’s decisions. The patient’s decision to refuse further medical treatment can often bring discord from family members.

The benefits of hospice for a patient with advanced heart disease

The nature of end-stage heart failure is complex. It involves providing support both for the patient and their families during their most vulnerable moments.

Hospice services provide an array of benefits for patients with advanced heart disease:

• Your hospice team is actively involved 24/7 in your care,
• Preventing heart failure exacerbation complications
• Providing emotional support

If you think you may benefit from the following services below, then hospice care may be for you.

Personal Attention

Every patient is unique and will present different needs towards their end-of-life care. Your case manager will create your hospice plan of care to suit your needs, preferences, and health goals.

Medical Support

Competent healthcare professionals and physicians are on staff to specifically address your concerns, signs and symptoms, physical discomforts, and other medical questions you may have. On-call staff are available around the clock to support you to ensure you receive the best possible medical care in the comfort of your home.

Comfort

Our hospice care team is committed to providing patients and families with the emotional and spiritual support they need.

What does hospice care do for heart disease patients?

Our hospice team’s goal is to relieve the patient’s pain and suffering, prevent complications, ensure safety in the patient’s surroundings, and provide education regarding end-of-life best practices. Our hospice services ensure that you or your loved one will receive the following:

Continuous Care

Your care team may offer continuous care for up to 24 hours if the patient requires close monitoring or interventions due to a severe problem or health crisis. 

Routine Home Care

A team of expert and compassionate professionals conduct regular home care visits. The goal is to help in alleviating symptoms, pain control, and educating patients and their families. 

Medical Equipment and Supplies

Providing the best possible experience at this stage of life is important. Our team understands that patients need to obtain the proper medical equipment and medical supplies, as related to the primary diagnosis.

Inpatient Care

Inpatient care is critical during those moments when extra help is needed to control pain or other symptoms. A short-term inpatient stay will be available in such cases. 

What can hospice do for family members?

The absence of proper end-of-life planning for families can be even more difficult when losing a loved one. Ultimately, hospice means:

• Getting guidance for the family member’s role in end of life care
• Getting family prepared for the death of a loved one
• Getting care and support during and after the death of the patient

Respite Care

Care at home requires a team effort and collaboration from the various parties involved. However, everyone knows that the patient’s family at the bedside is generally the one most involved physically and emotionally in the care of their ill loved one. Hospice provides families up to five days of inpatient respite services. This gives caregivers and family a much-needed break during this time.

Bereavement Services

Hospice providers understands that death is a life-changing moment for the survivors. Hospice provides bereavement services for the family to provide care and support after a loved one’s death.

Who pays for hospice services?

Often, hospice accepts Medicare, Medicaid, private insurance, and other forms of payment. You may contact your local hospice branch to find out more about hospice services and insurance questions.