Scared to death and learning to trust

Cardiologists with national reputations were available at a hospital just an hour away. I had connections there and could get what I was sure would be better care for my mother than she would receive in the small hospital where she had been taken following a heart attack in her office. But what if she died on the way? At 67, she had a full life and enjoyed her work and interaction with her colleagues, but she looked vulnerable, tired, and worried in that intensive care unit. I thought, “it’s time for her to rethink priorities, including better medical care.”

“I’m scared to death,” she whispered, as the machines monitoring her seemed poised to sound an alarm.  So was I, but I agreed to visit her parents to tell them about the heart attack and assure them she would be Ok.  As she called, “I love you,” I looked back but was so focused on moving her that I just waved goodbye.

I knew that a move wasn’t likely. The ICU staff would almost certainly resist it and say she should stay where she was. A friend who had recently been treated for a heart attack advised me to give her time to “settle down.” A transfer by ambulance could be disruptive, even if everything went smoothly. I decided to wait until tomorrow.

Unfortunately for my mother, tomorrow never came. I wanted it to make sense, but it didn’t. Maybe I should have moved her — it might have saved her life. But, if she had been moved and died, I would have felt I contributed to her death. There was no way to know. Everything had happened so suddenly and unexpectedly. I felt frustrated and sad, very sad. Given the unknowns involved, I don’t fault myself, but I do regret focusing more on treatment options than on providing comforting words and telling my mother I loved her, though she knew it.

That happened in 1986. Six years later, I was faced with a cancer diagnosis and returned to the same decision-making model I had used with my mother.  Until we learn otherwise, our tendency is to return to what we think is best practice, and that’s what I did, foregoing what reputable surgeons told me was the ‘gold standard treatment’ for colon cancer in favor of presurgical radiation recommended by a ‘big name’ doctor, who promised to shrink the tumor, limit the extent of surgery and reduce the potential for adverse side effects. My selection of a doctor backfired.  His decision to conclude my surgery with a fragment of a surgical needle left in me was his call. Still, when I developed a debilitating infection, instead of leveling with me and the doctor he referred me to, he said nothing about the needle. He falsified the operative report, putting his ego and reputation before my welfare. He died before the malpractice suit went to trial, so his insurance company paid me for his arrogance and dishonesty. I won the suit, but lost confidence in medical doctors, a factor that was to become an issue 12 years later, when medical decisions for our son were called for.

In 2005, my wife phoned our 39-year old construction manager son and found him alone and sick at his beach house, thinking he had flu. “I just want to sleep, Mom.” Concerned, she drove there, found him lethargic and in pain, and took him to the closest hospital emergency room, where doctors confirmed the onset of sepsis. An ignored abrasion had become infected and put him in intensive care in an induced coma, intubated, and on dialysis for kidney failure. Even if we had considered it, he was clearly too unwell to be moved anywhere.

The staff let the family sleep on the floor of a conference room down the hall, where we could stay in touch around the clock, but we weren’t prepared for what came next. Our son was having a heart attack. A young doctor asked us to authorize an emergency catheterization. We looked at each other with a feeling of shared helplessness.  “Could we have a few minutes to collect our thoughts?” The reply was polite, but clear: We should not take long.

The memory of my mother’s death flashed before me. My distrust of doctors kicked in. Not again, damn it! Was this procedure advisable for a highly compromised patient?  How much could his body withstand? We didn’t even know how to pronounce the doctor’s name. Could we trust him to do this?  We needed reassurance, a second opinion, but where would that come from on such short notice?

A friend asked a senior cardiologist colleague to speak with the young doctor. He agreed, if the doctor was willing — a big if with potentially a big consequence.  If the young doctor found my request offensive, he just might tell me to go to hell. Where would we be then?  I asked the doctor to speak with the cardiologist. He seemed to understand our dilemma, and graciously agreed. His unassuming self-confidence and humility were so reassuring that our concerns seemed almost unnecessary, but we had to make a life-or-death decision for a loved one. The telephone call went ahead. Within minutes, our friend called and affirmed complete confidence in this young man.  The procedure went well, and in time our son recovered. The experience remains vivid today.

In time I have reconciled the decisions I’ve had to make for loved ones, even the one I didn’t make that still breaks my heart.  A good bit of my anxiety in those situations was due to a lack of self-confidence. I didn’t have a decision process I could trust. I now know to accept the place where you find yourself and get the best care possible there. Competent medical care occurs in places large and small by knowledgeable practitioners who will seek help if needed. Before landing in that place unexpectedly, it can help to know and share with medical staff family medical conditions and history.

I shared these stories with our children, now in their 50s, and have found our conversations to be cathartic and instructive, combining an interest in what happened years ago and, though they don’t like to say so, an understanding of what may be helpful when they face similar challenges.  To paraphrase the words of Dutch author, Corrie ten Boom, my hope is they will not be afraid to trust an unknown future to a known God, and that they will be at peace with the outcome.

Arno Loessner is an associate professor, Graduate School of Urban Affairs & Public Policy, University of Delaware, Newark, DE.

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