Hiding the Truth About Heart Failure

“Have I, have you, been too silent? Is there an easy crime of silence?”― Carl Sandburg

Heart disease is the number one killer in the United States and has been for over 15 years. Over 600,000 Americans die from heart disease every year, some of them from heart attacks, some from fatal arrhythmias, and some from a slow loss of heart function known as congestive heart failure, or CHF. And while heart attacks and arrhythmias often strike without warning, congestive heart failure is a chronic, progressive, ultimately fatal disease.

Yet many people living with congestive heart failure never learn from their doctors that they are going to die. Certainly, they know they are very ill. Hospitalizations become more frequent as the disease progresses, and periods of feeling good are far outnumbered by periods of feeling bad. Fatigue and shortness of breath become more and more common, and quality of life dwindles relentlessly, albeit often over many years.

Still, thanks to improvements in technology and medical care, many patients with heart failure can live with the disease for many years. So many years, in fact, that all too often neither doctors nor their patients are prepared to discuss the possibility that death can occur at any time.

Jim was a 77-year old man with heart failure and moderate COPD. Two years before, his doctor had told him that the main arteries in his heart were almost completely blocked, and open heart surgery was the only possible “cure.” Given Jim’s overall state of health, the doctor believed that the surgery would be very risky — so risky that Jim might not survive. So Jim declined the operation and asked the doctor what would happen next. The doctor, a cardiologist, told him “Don’t worry. You’ve got plenty of time.”

For the next two years, Jim was in and out of the hospital, each time sicker than the time before. Because his heart wasn’t pumping effectively, his lungs would fill with fluid, and he would awaken in the middle of the night gasping for air. His son, with whom he lived, would call the paramedics, and they would whisk Jim off to the nearest emergency room. He would be given oxygen and medicine to remove the fluid from his lungs, breathing treatments, and more medicine to slow his racing heart. And, typically after several days, his breathing would improve, his heart rate would return to normal, and his doctor would say he was ready to go home. Jim would dutifully pack his belongings and leave the hospital, fully aware that the cycle would repeat itself in a couple of weeks, or perhaps even sooner than that.

It was as if there was a silent agreement between patient and doctor: “You don’t ask, and I won’t tell.”

But then one night Jim’s middle-of-the-night crisis didn’t follow its usual course. True, he woke up at 2 a.m. gasping for air. But this time the emergency room physicians were unable to stabilize him. He was fighting for breath and quickly losing ground. Jim had a do-not-resuscitate order in place, but he wasn’t at all prepared to die. So he was transferred to the coronary care unit, where he received non-invasive breathing assistance and strong intravenous medicines to help his failing heart. He teetered on the brink of death for a little over a week, and then, little by little, he began to improve. Soon he was out of intensive care and in a regular hospital room.

It was at that point that Jim received a visit from a young cardiologist. His usual doctor was off for the weekend, and the young doctor was filling in. Now that Jim was more stable, the young doctor wanted to do a test called an echocardiogram to evaluate what was going on with Jim’s heart. It was a noninvasive test, he explained, and would give them some important information about next steps. Jim agreed.

After the echocardiogram, the young doctor came to Jim’s room looking grim and a little sad. He sat down on the edge of the bed and told Jim in a gentle tone that the results of the test were very, very bad. “How bad?” Jim asked. “About as bad as it gets,” the young doctor replied. Jim’s heart was barely pumping any blood at all. “You should get your affairs in order,” the young doctor said. “You’ve probably only got a few months left, maybe less.”

And with that, the wall of silence that Jim and his doctor had so carefully erected to protect the dying man from the truth came tumbling down.

Please join me again next month to read the rest of Jim’s story.

About Kathleen

Each month Kathleen Clohessy, R.N., offers a new perspective on living with a terminal illness. Kathleen comes to SevenPonds with 25 years experience as a registered nurse caring for families and children facing life-threatening illness. She began her career in the Pediatric Intensive Care Unit at Nassau County Medical Center in New York. After relocating to California, she spent 15 years as an R.N. and Assistant Nurse Manager at the Pediatric Oncology & Bone Marrow Transplant Unit at Lucille Salter Packard Children’s Hospital at Stanford. She uses her knowledge and expertise to enlighten our readers about the challenges associated with chronic illness and its effects on family relationships.