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 after curative treatment has stopped. On this page, we've provided answers to these questions:

• When is the right time to ask about hospice?
• What can hospice do for a person with heart disease?
• What can hospice do for the family of a person with heart disease?
• What are the overall benefits of hospice care?
• How can I approach my hospice discussion with family members and loved ones?

When is the Right Time to Ask About Hospice for End-Stage Heart Failure?

Determining when hospice care is appropriate for end-stage congestive heart failure can be difficult for patients, families and even physicians. Congestive 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.

Are you a healthcare provider? Learn about the clinical characteristics of end-stage CHF and other heart diseases, and download a PDF of our hospice eligibility guidelines.

Signs it Might Be Time for Hospice

Patients are considered to be in the terminal end stage of heart disease when they have a life expectancy of six months or less. Only a doctor can make a clinical determination of congestive heart failure life expectancy. However, look for these common signs that the disease has progressed to a point where all involved would likely benefit from hospice services:

• The patient has advanced congestive heart failure or advanced coronary disease with frequent episodes of angina (chest pain resulting from insufficient supply of blood and oxygen to the heart).
• The patient has an abnormal heart (because of underlying disease) and suffers significant symptoms of fatigue, shortness of breath or functional decline.
• Optimal treatment for the patient’s condition has already been provided and he or she is not a candidate for further surgical or medical intervention.
• The patient has tried optimal treatment(s) and made the personal choice not to pursue any further specialized treatment.

People often say, “I wish I had asked about hospice sooner.”¹ Reports show early referral to hospice results in greater satisfaction for the patient and their caregivers. In 2015, seriously ill patients received hospice services for an average of 69.5 days, but given more time, hospice resources can supplement care provided by doctors and loved ones through a patient’s last six months of life.

¹J. Teno, MD; J. Shu, BS; D. Casarett, MD; C. Spence, RN; R. Rhodes, MD; S. Connor, PhD. National Hospice and Palliative Care Organization: Timing of Referral to Hospice and Quality of Care. Journal of Pain and Symptom Management. 2007.

What Are the Four Stages of Congestive Heart Failure?

Stage A

Patients are at risk for 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

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

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), and others.

Stage D

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 5 years of initial diagnosis.

What Can Hospice Do for a Patient with Congestive Heart Failure or Heart Disease?

Your hospice team evaluates the patient’s status and updates the plan of care as CHF or heart disease symptoms and conditions change, even on a day-to-day basis. The goal of hospice is to manage symptoms and relieve physical/emotional distress so patients can live as fully as possible, retain their dignity and remain comfortable at home.

The hospice plan of care treats a wide range of heart disease symptoms, including:

• Shortness of breath
• Chest pain
• Weakness and fatigue
• Functional decline
• Hypertension

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:

• Monitoring and managing your symptoms
• Communicating with your cardiologist’s office to intervene early and stabilize worsening conditions
• Providing medication, oxygen and other medical equipment related to your heart disease
• Providing services to reduce acute symptoms and avoid re-hospitalization
• Providing an average of 5 home visits per week and proactive phone calls

Hospice offers comprehensive services for patients with heart disease, 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. Upon admission, cardiac patients receive a comfort kit to address acute exacerbations.
• 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 hospice services can provide round-the-clock care until the patient is able to return home.
• Coordinated care at every level – A plan of care is developed with the advice and consent of the patient’s cardiologist or other physician. A team manager ensures that information flows between all physicians, nurses, social workers and, at the patient’s request, clergy. Hospice also coordinates and supplies all medications, medical supplies and medical equipment related to the diagnosis to ensure patients have everything they need.
• Emotional and spiritual assistance – Hospice has the resources to help patients maintain their emotional and spiritual well-being.

What Can Hospice Do for the Family 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 family caregiver is vital in helping hospice professionals care for the patient. As the patient gets weaker, symptoms increase and communication becomes more difficult. We relieve 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 meets the needs of patients and their family caregivers.
• 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 can assist families with financial planning and financial assistance during hospice care. After a death, they can help grieving families find additional financial assistance through human service agencies, if needed.
• Respite care – Caring for a loved one with an end-stage illness can cause tremendous stress. Hospice offers up to five days of inpatient care for the patient in a Medicare-certified facility in order to give the caregiver a break.
• Bereavement services – The hospice team works 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.

What are the Overall Benefits of Hospice Care?

If you or a loved one is facing a life-limiting illness, such as congestive heart failure, hospice can provide specialized medical care for patients and support services for loved ones. Here are some other lesser-known benefits of hospice.

• Comfort. Hospice works with patients and families, providing them the support and resources to assist them through this challenging chapter of life and to helping the patient remain in comfortable and familiar surroundings.
• Personal attention. Working with a patient and/or family, the hospice team members become participants in the end-of-life process, a very personal experience for any individual. The hospice mission is to care for each person individually. We listen to patients and loved ones. We advocate for them. We work to improve their quality of life.
• Reduced rehospitalization. In the last months of life, some people who are seriously ill make frequent trips to the emergency room; others endure repeated hospitalizations. Hospice care reduces rehospitalization: a study of terminally ill residents in nursing homes shows that residents enrolled in hospice are much less likely to be hospitalized in the final 30 days of life than those not enrolled in hospice (24% vs. 44%).²
• Security. One of the greatest benefits of hospice is the security that comes from knowing that medical support is available whenever you need it. The VITAS Telecare program assures healthcare support around the clock. And VITAS gives families the training, resources and support they need to give their ailing loved ones the care they deserve.

²Miller SC, Gozalo P, Mor V. Hospice enrollment and hospitalization of dying nursing home patients. American Journal of Medicine 2001;111(1):38-44

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. 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. This discussion guide is a tool for you to print out and 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 is most important in life.
• 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 prepared to address and ease his/her concerns in your next hospice discussion.

Request a Hospice Evaluation

The primary physician may recommend hospice when the time is right. But as anyone who has faced a serious illness knows, patients and family members often must act as their own advocates to receive the care they need and deserve.

You, your loved one or your trusted physician may request an evaluation to see if hospice is an appropriate option for care.