Many people are surprised to learn that the physical symptoms and psychological responses to advanced heart failure are like those with advanced cancer. Hospice care in the US is as effective in caring for people with heart failure as it is for cancer. This article aims to describe some of the features of heart failure and how you might feel better informed or help someone you know.
The Meaning of Heart Failure
The meaning of heart failure is different than that of cancer. The function of the heart is mechanical. A common reaction to learning someone has heart failure is, “Whew! I’m glad it’s not cancer.” The heart pumps blood. It’s an annoying malfunction. In contrast, cancer feels like an invasion of something alien or other—it doesn’t feel like part of me. The ‘War on Cancer’ initiated during President Nixon’s term in office captures that feeling of being attacked by an enemy.
Yet, we can’t live without a functioning heart. When it stops effectively pumping blood, the body’s reaction is frequently pain (78% of people with heart failure have pain), shortness of breath (61%), depression (59%), difficulty sleeping (45%), and loss of appetite (45%). One of the most profound effects is fatigue—not having the same amount of energy as before.
Not giving heart failure the same meaning as cancer can lead to its own kind of distress. It is usual for a person with advanced heart failure to spend more time sitting or lying down. It isn’t a lack of willpower or an absence of the ‘fighting spirit’; it is a product of not having enough blood to bring oxygen to the rest of the body.
Problems with the Heart
There are three broad categories of problems with the heart: electrical, muscular, and valvular. Specialized parts of the heart ‘keep the beat’ by rhythmically producing an electrical discharge that travels through established pathways to initiate muscular squeeze that pushes the blood into the lungs and the rest of the body. Healthy muscle gives a good squeeze; unhealthy muscle, not so much. Valves keep the fluid from backing up when the heart rests and refills between beats.
As the science of cardiology has improved, the number of subspecialists who care for the heart has increased. There are electro cardiologists, invasive cardiologists (who specialize in the procedures to unblock vessels or insert new valves), heart failure cardiologists (who primarily focus on medical management of the heart muscle) and cardiothoracic surgeons. Individually and collectively, they can do remarkable things that vastly improve some patients’ length and quality of life.
When the Medicine Isn’t Enough
Heart disease remains the leading cause of death for Americans. As deaths from heart attacks have dropped (sudden blockage of the vessels bringing blood to the heart muscle that causes the heart to stop), death from heart failure has risen.
A feature of the health care of someone who is experiencing worsening heart failure despite the best medical care is the job of telling the patient the truth. It’s never routine for a physician to tell the patient the ‘bad news.’ In addition, it seems we all had the same mother. She taught us, “If you don’t have something nice to say, don’t say anything at all.” Many of us were also taught to be respectful of the doctor and listen to what the doctor says. The doctor will tell you what you need to know. Do you see the problem? The related issue is that patients, by and large, love their doctors. You don’t want to hurt or make someone you love uncomfortable. Physicians love their patients, and the same emotions apply.
One of the developments in American medicine since the 1950s is the broad conviction that doctors should tell patients the truth about their condition, including their prognosis, if the patient wants to know. In surveys of Americans, the vast majority want to know. In surveys of American physicians, there is near unanimity in this. But those surveys also show that doctors wait for the patient to initiate the conversation. Surveys also show patients wait for their doctors to initiate the conversation. Do you see the challenge? Both sides hesitate to bring up the subject out of love; not wanting to distress the other. The proliferation of specialist physicians can make this even more challenging because there is a tendency for them to say, “I’m the doctor for this aspect of the heart, but I’m not the doctor for all of you—I wouldn’t presume to tell you anything about your prognosis because that’s a ‘big picture’ agenda item.” Your primary care physician will hesitate to prognosticate because they may not have all the information they need from the cardiologist(s) to feel confident.
Get the Information You Need
If you, or someone you love, has advanced heart failure, you need to speak up or have someone speak up for you. A simple phrase like, “Doctor, I’m the kind of person who needs to plan for the future. Will you tell me what I can expect? How long do I have before I die?”
The best predictor of death from heart failure is the overall ability to function. Worsening symptoms like fatigue and shortness of breath that persist and worsen over time are the hallmarks of a poor prognosis.
It is notoriously difficult for a physician to be precise in predicting the future for an individual patient. But doctors do have information about patients in situations like yours to help give you a “days to weeks,” “weeks to months,” or “months to years” ballpark, which is what you need to be able to plan for yourself and your family.
Get the Help you Need
Hospice programs care for people with heart failure and their families. The Elizabeth Hospice has received specialty certification for treating patients with heart failure. You can ask for an informational visit to learn in more detail what is available to you in your particular situation. Medicines and approaches are available to effectively treat the stress and symptoms of advanced heart failure, to prevent frequent hospitalizations or sudden worsening of symptoms, and to make the best of the time that remains, including leaving a legacy of memories for your family.
Dr. Charles F. von Gunten, MD, PhD, Chief Medical Officer, The Elizabeth Hospice
February 2024