Hiding the Truth About Heart Failure, Part Two

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Things come apart so easily when they have been held together with lies. ~ Dorothy Allison

Last month, I introduced my readers to Jim, a 77-year-old man who had been living with congestive heart failure for several years. He and his doctor had never talked about Jim’s failing health or the implications of his more frequent hospitalizations, increasing shortness of breath and fatigue. Nor had they talked about his possible death.

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.”

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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.

Credit: japan.com

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.

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.

If you missed part one of Jim’s story you can catch up here.