Hiding the Truth About Heart Failure

Doctors and their patients often keep silent for far too long

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.

Then one day, a young doctor who had never met Jim before ordered a test to assess his heart function, and Jim came face to face with the truth.

After Jim came home from the hospital following that fateful conversation, I spoke to him on the phone. I expected him to be devastated, or at least very upset. He had just learned that he was dying, not some time in the distant future, but very soon. Yet he was amazingly, even eerily, calm.

“I knew this was coming,” he said to me. “I feel like crap all the time. I don’t feel like eating. I don’t feel like going anywhere. Even getting up to go to the bathroom wears me out.”

And I knew he was telling the truth. Over the last few months Jim had barely left his bedroom. He spent his days and evenings watching TV and occasionally talking on the phone to his family back East. A widower who had not adjusted well to single life, Jim’s mood had been worsening for quite some time. Now it seemed that his increasing depression had perhaps been a sign of his increasing frailty and worsening physical health rather than his ongoing grief over his wife’s death.

I asked Jim how he felt about learning that his heart failure was far worse than he had been led to believe. His answer was as straightforward as it was quick:

“I feel relieved,” he said. “I don’t have to pretend anymore. And I don’t have to keep trying to do things that I can’t do. Everyone is always bugging me…’Why don’t you get up and eat dinner at the table with the rest of the family? Why don’t you go sit outside? It’s a beautiful day!’ They don’t understand that it’s just too much work! Now I can stop feeling guilty and rest.”

And, indeed, Jim’s son and daughter-in-law had been “bugging” him — following the doctor’s advice to push their father to remain active and engaged. Now that it seemed that the doctor had been wrong (or at best poorly informed), all of that coaxing and cajoling seemed suddenly very unfair in light of how terribly sick Jim was.

When doctors hide the truth from patients, it is usually, I have come to believe, to protect themselves. Talking about death is difficult, especially when the patient is someone the doctor knows well and has helped to feel better time and time again. This may be especially true for cardiologists, who often quite literally snatch their patients from the jaws of death.

But remaining silent in the face of worsening illness is hurtful and harmful, as Jim’s story demonstrates so well. Jim knew he was getting sicker, and he deserved to know that he had a very limited time left to live. Yes, he was complicit in remaining silent, but his reticence can be excused. After all, he was the patient. It was his doctor’s responsibility to tell him the truth.

Jim died in hospice not long after I spoke to him that last time. His death left me sad and a little angry — not because it wasn’t his time, but because he was robbed of the opportunity to prepare himself spiritually and psychologically for death. Perhaps he had been doing so all along….I’ll never know. But I still think he deserved better than he got.

May We Suggest:

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When Pretense Is All That’s Left

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When Is the Right Time for Hospice Care?

Many patients living with serious illnesses wait far too long to ask for help