Hospice for Heart Disease & End-Stage CHF (Congestive Heart Failure)
If you are reading this, it is likely you or someone you love has been waging a difficult physical and emotional battle against heart failure or some form of heart disease. Your search for comfort, support and answers does not stop when you accept that you must learn to live with heart disease. That’s when VITAS can help.
Hospice helps patients and their families deal with the significant impact of heart disease when curative or life-prolonging treatment is becoming less effective. On this page, we've provided answers to these questions:
- When is the right time to ask about hospice?
- What are the signs and symptoms of advanced heart failure (HF)?
- What are the four stages of HF?
- What can hospice do for a person with heart disease?
- What can hospice do for the family of a person with heart disease?
- How can I approach my hospice discussion with family members and loved ones?
When is the Right Time to Ask About Hospice for Advanced Heart Failure?
Determining when hospice care is appropriate for advanced heart failure can be difficult for patients, families and even physicians. Heart failure in its final stages is often unpredictable, and symptoms can vary.
Typically, patients experience a recurring cycle of dramatic decline followed by a period of recovery. As a result, the majority of heart disease patients who could benefit from hospice care never receive essential emotional and physical support.
Signs it Might Be Time for Hospice
Patients are considered to be in the terminal advanced stage of heart disease when they have a life expectancy of six months or less. Only a doctor can make a clinical determination of heart failure life expectancy. When a patient with advanced heart disease, such as heart failure or advanced coronary disease, look for these common signs that the disease has progressed to a point where all involved would likely benefit from hospice services:
- The patient suffers from frequent episodes of chest pain (angina), fatigue or shortness of breath leading to functional decline.
- The patient is receiving or can no longer tolerate optimal medical treatment for heart disease.
- The patient is not pursuing or is not a candidate for surgical intervention.
People often say, “I wish I had asked about hospice sooner.” Reports show early referral to hospice results in greater satisfaction for the patient and their caregivers.
Despite the benefits of early enrollment, nearly half of people who use hospice receive care for less than 15 days.
Common Signs and Symptoms of Advanced Heart Failure
Common advanced heart failure symptoms include:
- Chest pain (angina): Chest pain may occur at rest or with minimal activity.
- Fatigue: Patients may sleep or nap more, have to rest during activities or stop doing things they enjoy due to increasing tiredness or fatigue.
- Shortness of breath (dyspnea): Difficulty breathing may occur during activity and at rest, which also impacts sleep.
- Swelling (edema): Fluid buildup in the legs, ankles or abdomen may become more pronounced and persistent.
- Heart palpitations: Patients may notice an abnormal heartbeat more frequently in advanced stages.
- Decreased responsiveness: In the final days, patients may sleep more and become less aware of surroundings.
These symptoms combined often result in:
- Increased physical decline: Patients begin to noticeably slow down, becoming less active or requiring more help with tasks around the house or with self-care.
- Frequent hospitalizations: Episodes of acute symptom worsening may lead to more ER visits or hospital stays.
What Are the Four Stages of Heart Failure (CHF)?
Stage A: At Risk
Patients are at risk of heart failure (HF). They don’t have HF, but they do have risk factors like high blood pressure, coronary artery disease, diabetes, metabolic syndrome, obesity and family history of heart disease. The goal of treatment is to prevent a patient from developing HF.
Stage B: Pre-Heart Failure
Patients have pre-HF: They don’t have signs or symptoms of HF, but they have at least one of the following:
- Structural heart disease (like systolic or diastolic ventricular dysfunction, an enlarged chamber, ventricular hypertrophy, valve disease or abnormal heart wall motion);
- Abnormal echocardiogram or invasive test (often showing structural heart disease above, abnormal filling pressures); or
- Abnormal cardiac tests with risk factors (elevated BNP, cardiac troponin)
Stage C: Symptomatic Heart Failure
Patients have structural heart disease (as above) and current or previous symptoms of HF. Symptoms may include shortness of breath or difficulty breathing, persistent cough, palpitations, fatigue, nausea, swelling in legs or feet, weight gain (due to swelling), pain and others.
Stage D: Advanced Heart Failure
Patients have advanced HF with progressive symptoms of HF that are less responsive to treatment. These symptoms interfere with daily life, and patients may suffer from multiple hospitalizations for symptom control. This stage usually lasts less than one year.
Most patients diagnosed with HF are eligible for hospice within five years of initial diagnosis.
How Can Hospice Support a Patient with Heart Failure or Heart Disease?
Your hospice team evaluates the patient’s status and updates the plan of care as heart disease symptoms and conditions change, even on a day-to-day basis. The goal of hospice is to manage symptoms and relieve physical and emotional distress so patients can live as fully as possible, retain their dignity and remain comfortable at home.
HF Symptoms Hospice Helps Manage
The hospice plan of care treats a wide range of heart disease symptoms, including:
- Shortness of breath
- Chest pain
- Fatigue
- Nausea
- Weakness
- Loneliness
Medical Care & Support Provided by Hospice
When you turn to hospice, you are not alone in your journey; your hospice care team is educated and experienced in advanced cardiac care, such as:
- Pain and symptom control: VITAS specialists in pain and symptom management ensure patients are comfortable, free of pain and able to enjoy life and remain in control of day-to-day decisions for as long as possible.
- Care for patients wherever they live: in their homes, long-term care facilities or assisted living communities. If symptoms become too difficult to manage at home, inpatient care (in a hospital or freestanding inpatient hospice care unit) can provide around-the-clock care until the patient is able to return home.
- Coordinated care at every level: A plan of care is developed with the patient and family, often in coordination with the patient’s cardiologist or other physician. A team manager ensures that information flows between physicians, nurses, social workers, chaplains or spiritual support, hospice aides and other clinical specialists. Hospice also coordinates and supplies all medications, medical supplies and medical equipment related to the diagnosis to ensure patients have what they need.
Emotional and Spiritual Support
Hospice care goes beyond medical needs. It also has the resources to support the emotional and spiritual well-being of patients.
AHA Certification
Cardiac Care Certified by The American Heart Association
VITAS is the first national hospice provider to earn the AHA Palliative/Hospice Heart Failure certification across its entire footprint. The leading US cardiac organization recognizes the VITAS care model as best-in-class for advanced cardiac patients, from admission through bereavement. Patients and their families can trust VITAS to meet the AHA’s gold standard for advanced cardiac care.
How Can Hospice Support the Family/Caregiver of a Person with Heart Disease?
Family members may have to make difficult healthcare and financial decisions, act as caregivers and provide emotional support to others. If the decision is made to stop medical support, some families experience strong emotions and feel overwhelmed.
Hospice offers comprehensive services for families of patients with heart disease:
- Caregiver education and training – The caregiver is vital in helping hospice professionals care for the patient. As the patient gets weaker, symptoms increase and communication may become more difficult. We help address families’ concerns by educating them on how best to care for their loved one and provide coping skills.
- Help with difficult decisions – Hospice helps families make tough choices that impact the patient’s condition and quality of life — for example, whether to give antibiotics for a recurring infection.
- A VITAS nurse by phone 24/7 – Even the most experienced caregivers will have questions and concerns. With Telecare®, they don’t have to wonder, worry or wait for an answer. After hours, Telecare provides trained hospice clinicians around the clock to answer questions or dispatch a member of the team to the bedside, if necessary.
- Emotional and spiritual assistance – Hospice helps meet the needs of patients and their family caregivers, including coping skills, working through grief and much more.
- Financial assistance – Although hospice services are covered by Medicare, Medicaid/Medi-Cal and private insurers, families may have other financial concerns that arise from a loved one’s extensive illness. Social workers assist with financial planning, financial assistance and other resources during hospice care. After a death, they can help grieving families find additional financial assistance and resources through human service agencies, if needed.
- Respite care – Caring for a loved one with an advanced illness can cause tremendous stress. Hospice allows the caregiver to take a break with respite care consisting of up to five days of inpatient care for the patient in a Medicare-certified facility.
- Bereavement services – The hospice team can work with surviving loved ones for up to 13 months after a death to help them express and cope with their grief in their own way.
How Can I Approach a Hospice Discussion with Family Members and Loved Ones?
The final months of life are frequently marked by strong emotions and hard decisions. Talking about hospice, even with those closest to you, can be difficult. Here are some tips to get the discussion started.
For patients speaking to families
Education is key. Educate yourself first. By now, you’ve probably done some research online. It may be helpful to read and share our Hospice Family Discussion Guide. This discussion guide is a tool for you to print out and use in a family discussion.
Determine what your family members know. Before bringing up hospice, make sure your family members and caregivers have a clear understanding of your health status. People handle difficult information in different ways. If family members do not accept or understand your prognosis, ask your physician, clergy, a VITAS social worker or a trusted friend to speak with them on your behalf.
Discuss your goals for the future as well as theirs. As a patient, your greatest concern might be to live without pain, to stay at home or not to be a burden to your family. Ask your family members/caregivers about their concerns as they consider the coming days, weeks and months.
Explain that hospice is not giving up. It is an active choice to ensure that everyone’s needs are met.
Take initiative. Remember, it’s up to you to express your wishes. Sometimes, out of concern for your feelings, your family or loved ones might be reluctant to raise the issue of hospice care for you.
For families speaking to patients
Education. You’ve probably done some research online. It might also be helpful for you to read and share our Hospice Family Discussion Guide. Save and print the discussion guide to use in a family conversation.
Ask permission. Asking permission to discuss a difficult topic assures your ill family member that you will respect and honor his or her wishes. Say something like, “I would like to talk about how we can continue to ensure you get the very best care and attention as your condition progresses. Is that okay?”
Determine what is important to your seriously ill family member. Ask questions about the future: “What are you hoping for in the coming months, weeks or days? What are you most concerned about?” The patient might express a desire to be comfortable, to stay at home or to not become a burden.
Discuss hospice care as a means of fulfilling the patient’s wishes. Once the patient and family are clear about what is important to the patient, explain that hospice is a way of making sure wishes and desires are met. For some, the word hospice evokes a false notion of giving up. Explain that hospice is not about surrendering to disease or death. It is about bringing quality of life to the patient’s remaining months, weeks or days.
Assure the patient that he/she is in control. Hospice gives patients options: the option to remain in the comfort of their own home, the option to take advantage of as much emotional and spiritual support as they desire, the option to have their own doctor actively involved in their care. Reassure your seriously ill family member that you will honor his or her right to make choices about what matters most to them.
Be a good listener. Keep in mind that this topic requires a conversation, not a debate. Hear what the other person is saying. Know that it is normal to encounter resistance the first time you talk about hospice care. But if you listen and understand your loved one’s barriers and reasons for resisting, you will be better prepared to address and ease his/her concerns in your next hospice discussion.
Download a hospice discussion guide for families >
Request a Hospice Evaluation for Heart Failure
The primary physician may recommend hospice when the time is right. But for people living with heart failure, changes in symptoms — such as worsening shortness of breath, fatigue or frequent hospitalizations — can make it difficult to know when additional support is needed.
You, your loved one or your trusted physician may request a hospice evaluation to determine whether hospice care is an appropriate option for managing advanced HF and improving comfort and quality of life.