"The First Client: They Are Killing My Wife."

This submission is reprinted with permission from Dr. Gerda Maissel, MD, BCPA, author of the monthly Substack blog, The Foglight.

The First Client: They Are Killing My Wife

On the other end of the telephone call, a grown man in his sixties was trying, and failing, to hide his sobbing. I listened as he tried to explain what was happening to him. “They are killing my wife,” he said, through his tears. I didn’t know this man well. In fact, I didn’t know him at all.

He was—hold on, now—the uncle of a woman who was working with a friend of mine. He was a retired city worker, and his wife was an accountant. They lived in upstate New York, a good forty miles from me. They were childless but had a long, happy marriage. I never would have heard from him, or met him, except for the sad, terrible thing that happened to him one night in 2020.

He was driving his car, with his wife in the passenger seat. They were heading east on the George Washington Bridge, crossing into Manhattan. There was a terrible rainstorm, he lost control of his car, and they had a bad accident. He was barely injured, but his wife became a quadriplegic, able to breathe only with a ventilator.

Trouble on the Horizon

And that is how they were cast into the heartless, incomprehensible labyrinth that we call the American health care system. It didn’t matter that he was an educated man, with good insurance—the healthcare system still drove him to despair. His wife went through the usual hospitalization. She had spine surgery, then was discharged to an acute rehabilitation facility. After a month, that facility discharged her to another facility, a sub-acute ventilation unit, in a nursing home.

Then her care took a turn for the worse. The nursing home doctor’s notes literally looked the same from week to week to week—a terrible sign. it was clear nobody was really paying attention to her, as an individual. There was no thought process to her treatment. Unsurprisingly, she got pressure ulcers, a urinary tract infection, and pneumonia. She was wasting away.

Getting an Advocate on Board

It was at this point that her husband, sensing that something was very wrong, reached out to me. He heard that I was a doctor, experienced in navigating this world that was new to him. I got back to him immediately.

With her permission, I reviewed his wife’s medical records. I talked to the staff or tried to—her physician never returned my phone calls. This was the middle of the pandemic, and everybody was stressed. My first instinct was to try to improve her care, but over several weeks it became clear she was getting sicker. She had to get out.

Knowing she had a significant infection; I told her husband to use that as a reason to insist she be sent back to the hospital. Once she had been treated there, the hospital tried to send her back to the same nursing home. But I knew families had the right to refuse a specific placement for a loved one. They can say, “No, I am not letting my loved one go back to such a place.”

Her husband was a nice guy. Like most of us, he wanted to be accommodating. He didn’t know that refusing the hospital’s request for a transfer was an option, and if I had not told him, he would have let her go back there.

She was too sick to go straight home. First, she had to go to an LTACH, a long-term acute care hospital. But after a period at an LTAC, she’d be able to live on a ventilator at her house. The hospital told the husband this would be impossible, but I knew, from years of experience, that it wasn’t. I told him how it could be done: you need the right equipment, the right plan, 24-hour staffing—and a generator, in case the power goes out.

Eventually, we got them set up at home, and she got several months in her own house, surrounded by family. In the end, alas, she got sicker and had to be re-hospitalized. She did not get to die at home. But she got several months at home, which gave her a quality of life that she otherwise would never have had again.

A New Calling and a New Career

When I received the call from that man, I had already decided I was done with the corporate medical world. I had led several medical groups, overseeing as many as five hundred doctors. But the system was broken, and rather than remain part of it, I wanted to help people navigate its brokenness. I wanted to help people get well again.

He called me in November, but this wasn’t the only call I got that fall. Around the same time, I heard from another family in distress and struggling with the healthcare system. There was a need. And so I saw what my new career was. That January, I became a patient advocate.

Dr. Gerda Maissel, Author of the monthly blog, The Foglight,  is a Board-Certified Physical Medicine and Rehabilitation physician and a Board-Certified Patient Advocate.