After living with congestive heart failure (CHF) for many years, Morris felt it might be time to consider hospice care. His illness had progressed to an advanced stage, bringing frequent pain, exhaustion, and shortness of breath. These episodes often led to hospital visits and made it difficult to enjoy daily life. At 70, Morris found himself increasingly anxious, never knowing when the next health crisis would strike.
When a friend suggested hospice, Morris was hesitant. He didn’t feel ready for “end-of-life” care. But after some research, he learned that hospice wasn’t about giving up, it was about feeling better. Hospice care could help him manage symptoms, avoid the hospital, have a team to help ease his anxieties and concerns, and focus on the people and activities that mattered most.
What is congestive heart failure?
Nearly 6.5 million U.S. adults live with heart failure, according to the Heart Failure Society of America. Heart failure occurs when the heart is no longer able to pump enough blood to meet the body’s needs. As a result, blood can back up in the body, causing swelling and fluid buildup, especially in the legs, abdomen, and lungs.
When this fluid accumulates in the lungs, it’s known as congestive heart failure. This can lead to difficulty breathing, fatigue, and frequent hospitalizations.
While heart failure is most common in older adults, it can affect people of all ages. It’s typically caused by underlying health issues that weaken or damage the heart over time – such as high blood pressure, diabetes, previous heart attacks, or heart valve disease. Lifestyle factors like obesity, chronic kidney disease, alcohol abuse, and smoking can also increase the risk.
Although heart failure is a lifelong condition and cannot be cured, many treatments are available to help manage symptoms and improve quality of life. These may include medications that remove excess fluid though increased urination, drugs that help the heart pump more efficiently, and dietary changes (such as reducing salt intake) to help minimize fluid buildup.
Signs and symptoms of heart failure
- Fatigue and weakness
- Shortness of breath
- Weight gain
- Swelling in legs, feet, belly or lower back
- Cough
- Breathing difficulties when lying down
- Needing several pillows to sleep comfortably
- Increased heart rate or palpitations
- Loss of appetite
If you or a loved one is experiencing several of these symptoms, it may be time to consider hospice care. Learn about hospice eligibility requirements for CHF.
End Stage Congestive Heart Failure and hospice
Like Morris, many patients with advanced CHF face difficult decisions: Should I continue aggressive treatments? Is quality of life more important than length of life? Can I manage this illness at home instead of frequent hospital stays?
The American Heart Association recommends having these conversations “early and often”. Discuss your treatment goals, values, and what kind of care you’d want during a health crisis, before it happens.
“You don’t want to have to start from zero when a big medical event happens that requires tough decision making,” says Larry A. Allen, M.D., a heart-failure advisor to the American Heart Association. “Hope for the best, but plan for what may come.”
Hospice care supports that planning. It focuses on comfort, not cure, addressing the physical, emotional, social and spiritual needs of both patients and their families.
Hospice can may be provided:
- At home
- In assisted living or nursing homes
- In hospitals or dedicated hospice centers
What hospice care looks like for CHF patients.
Hospice takes a team approach, including:
- Physicians (your own physician may also remain involved)
- Registered nurses
- Home health aides
- Social workers
- Spiritual support counselors
- Complementary therapies (massage, music, pet, aromatherapy)
- Trained volunteers
In Morris’s case, his hospice physician adjusted his medications for more consistent relief. A nurse visited regularly to monitor his symptoms, and a home health aide helped with bathing, grooming, and light chores – making Morris feel better physically and emotionally. Most importantly, hospice helped Morris avoid more hospitalizations.
When is the right time to call hospice?
It not always easy to know when to start hospice care. But if someone with CHF is experiencing declining health and worsening symptoms, it may be time.
General hospice eligibility
- A life expectancy of six months or less (certified by a physician)
- Progressive decline in health
- Continued weight loss
- Ongoing weakness and fatigue
- Other uncontrolled symptoms
CHF hospice eligibility
- Frequent hospitalizations for heart failure
- Angina (sharp chest pain) at rest
- Not a candidate for surgery or declines surgery
- Cardiac arrest or unexplained fainting
- A stated wish to avoid future hospitalizations
- Other chronic conditions that shorten survival
You don’t have to meet all these criteria. Let Samaritan’s expert nurses assess your specific situation. Call us at (856) 596-1600 for more information or to schedule an evaluation. We serve patients across Southern New Jersey: Burlington, Camden, Gloucester, Mercer, and Atlantic counties.
Outside our area? Call 1-844-GET-NPHI (844-438-6744) to be connected with a nonprofit hospice near you.
What services does hospice provide?
Hospice offers a wide range of services tailored to each patient and their family:
- Medical oversight and visits from nurses and hospice physicians
- Medications, equipment, and supplies related to CHF
- Oxygen, wound dressings, incontinence products, etc.
- Education and support for caregivers
- Emotional and spiritual counseling
- Respite care for caregiver breaks
- 24/7 on-call access to the hospice team
- Grief support for the family
The goal: not to cure, but to offer the best quality of life possible, on your terms.
Are all hospice programs the same?
Not all hospices are alike. When evaluating programs, Consumer Reports recommends asking:
- Does the agency have a long history of serving CHF patients?
- When was it founded? (Look for 20+ years of experience.)
- Are hospice-certified nurses and doctors available 24/7?
- Does it have a 24/7 call line?
- Are services like massage and music therapy offered?
- Is the hospice Medicare-certified? (This requires the hospice to follow Medicare regulations, and is necessary to receive Medicare or Medicaid coverage of hospice services.)
- Is the hospice a nonprofit?
- Does it offer inpatient hospice care?
- Is the agency nationally accredited?
Who pays for hospice?
Hospice care is covered by:
- Medicare (100% coverage)
- Medicaid
- Most private insurance plans
Coverage includes CHF-related medications, supplies, and equipment.
Planning ahead for hospice and palliative care
At any stage of CHF, it’s wise to begin planning with your care team.
The AHA recommends:
- An annual heart failure review to discuss how well you are functioning, treatment goals, and your preferences for treating possible emergencies, such as kidney failure or sudden cardiac arrest.
- “Milestone” discussions to reassess treatment goals following a major event, such as a defibrillator shock, hospitalization, or significant loss of function.
- Honest and thorough conversations about major side effects of treatment, quality of life, loss of independence, impact of worsening symptoms, and increased commitment by caregivers and families.
- Considering palliative (comfort) care before you transition to hospice care. Palliative care can be offered alongside medical treatment at any stage of illness to help manage symptoms and assist patients and families with tough decisions.
- Developing a care plan for the end of life that ensures your needs and wishes are met.
Hospice provides palliative (comfort) care for end-stage heart failure patients, as well as end-of-life care and support for patients and their loved ones. With advanced planning, patients and families can avoid the stress of making difficult decisions during a crisis, and help ensure your needs and wishes are best met.
Contact Us
If you or a loved one has advanced CHF or another serious illness in South Jersey, reach out to Samaritan. We’ll help you understand your options, answer your questions, and provide compassionate support.
Reach us 24/7 at (856) 596-1600, or by contacting us here.
Samaritan is a member of the National Partnership for Healthcare and Hospice Innovation, a network of not-for-profit hospice and palliative providers across the country. If you know someone outside of our service area who is living with advanced illness and can benefit from hospice or palliative care, please call 1 (844)-GET-NPHI (844-438-6744) for a referral to a not-for-profit provider in your area.