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Deaths Of Two Dads A Quarter Century Apart Reveal Profound Change In Care At Life's Last Moments

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By ROSEMARY GOUDREAU

Published: December 23, 2007

Updated: 12/30/2007 04:46 pm

It came as no surprise they got his death certificate wrong. George Kaylor, my step-dad, didn't die of bladder cancer. He didn't even have cancer.

George died of complications from bladder surgery, plain and simple. The end came in July, after a four-month spiral through a health care system that never really knew him.

Don't get me wrong. My stepdad had many caring medical professionals – including some of the best in town – who treated him with dignity and care during his sad decline.

But because of a significant but little-known change in how health care is delivered, he never had that one person, that one doctor, who knew his medical storyline – someone who knew he didn't have cancer.

And so George went to Melech Hospice House – misdiagnosed.

A Pendulum Swung Too Far

My, how health care has changed since my father died at Memorial Hospital in 1983, three days after suffering a cerebral hemorrhage in the U-Save Supermarket on West Hillsborough Avenue.

In dad's case, there was a doctor, an internist, who thought he was God. I'll never forget asking that doctor whether he thought a neurologist should be called in. He turned to my mother and said that if her family didn't trust his judgment, she should find herself another doctor.

Just the opposite happened in my stepdad's death.

No one doctor stood up and took charge. A multitude of specialists came and went, but George – and we, his family – often didn't know who his doctor was, or who we could talk to.
The reason for our confusion was simple, really. George seemed to have a different doctor every day.

Turns out a new medical specialty – the "hospitalist" – was created in recent years to care for the hospitalized patients of other doctors. Because the hospitalist is there, primary care doctors can spend all day with patients at the office and never worry about going to the hospital again. But since hospitalists practice in groups, patients see different doctors on different days.

It's easy to see how this new specialty has helped doctors, hospitals and insurance companies find efficiencies. But it's changed the nature of the doctor-patient relationship at the worst time of a patient's life – when they're in the hospital, perhaps on their death bed.

Given George's case, no one could argue that economically discouraging primary care doctors from making hospital rounds is a boon for patients.

Revolving Doctors Miss Big Picture

George might have been 88, but doctors once told him he had the body of a man 10 years younger. He almost had that medical report framed.

Still, the long ordeal wore him out.

George had surgery at St. Joseph's Hospital in April for a bladder obstruction. Thankfully, the biopsy came back clear, but post-op, the bleeding just wouldn't stop.
After two weeks, he was discharged to an Oldsmar rehabilitation center, where he lasted a day before collapsing. He was rushed by ambulance to Meese Countryside Hospital, where admitting doctors said they were told George had prostate cancer. We, the family, set things straight – one of four major misdiagnoses we'd clear up during his four-month journey.

Funny thing about those medical charts that draw doctors away from the bedside. People are so busy "charting" that no one seems to be reading the record deeper than a day or two. And with no single doctor overseeing the arc of care, assumptions can get made that are flat-out wrong.

George never had prostate cancer, bladder cancer, COPD or emphysema, as his record would suggest. What he had was post-operative bleeding that lasted nearly two months and required multiple transfusions. When it was finally suggested that he undergo bladder reconstruction surgery, we sought a second opinion at Moffitt Cancer Center. Just after his arrival there, thankfully, the bleeding stopped.

But by then, George was in decline. His lungs were congested and he had developed an antibiotic-resistant infection that overwhelmed his body and required care-givers to gown-up every time they saw him. No longer in need of surgery, he was handed off to a team of doctors whose names we, the family, never really knew.

For any chance of recovery, George had to start eating again. The feeding tube in his nose was irritating things and had to come out. A surgeon tried to insert a stomach tube, but scar tissue from his service days got in the way.

Still unable to pass the "swallow test," George was discharged after three weeks to a rehabilitation center in Town 'N Country, where he lasted a day before being rushed to St. Joseph's with pneumonia. There, surgeons made a second attempt to insert a stomach tube, but found it would require major surgery. "Some choice I have," George said. "Either I starve to death or I die on the operating table."

After a long talk with mom, George decided against anything heroic.

Not long later, he was discharged to the hospice house.

Deconstructing A Misdiagnosis

The day before he slipped into a death spiral, I saw George on my lunch hour. When I walked in, he was eating lunch. After they pulled out the nasogastric tube, he discovered he could swallow. And he had a pretty good appetite.

Maybe he could pull through this yet! That was the thread of our last conversation. That, and the need to swallow carefully because he was bedridden. He understood the risk of aspiration pneumonia, where stomach contents come up and get inhaled into the lungs. He chewed slowly.

I called the hospice director about his exciting development, which is when the misdiagnosis was discovered. Hospice had been told that George had terminal bladder cancer. But he doesn't have bladder cancer, I insisted. He's got complications from surgery.

The director took the time to read the record in depth, and called back to explain how the chart showed his diagnosis progressing from "possible bladder cancer" on admission to St. Joe's, to "history of bladder cancer" a week later, to a highly differentiated type of bladder cancer at the time of discharge.

Still, by day's end, our hopes were dashed. After eating that miraculous lunch, George threw up – and aspirated. He died a little more than a day later.

The Lesson For Patients

George was buried at the national cemetery in Bushnell with all the splendor of a military funeral. He'd served in World War II, Korea and Viet Nam, helping orchestrate the daily feeding of thousands of soldiers. Later in life, he might have made the best stuffed peppers ever, but his meatloaf could sink a battleship.

Life has changed since his passing. No one's taking pictures at the birthday parties anymore and no one's walking in wearing those funny hats. Everything seems so much more quiet.

When his death certificate arrived in the mail, mom eagerly opened it to see the cause. And there it was. The final indignity. Bladder cancer.

I spoke with the doctor at the hospice house, who saw George only at the end. She took on the task of really reading his record and understanding the nightmare he'd endured since surgery. His corrected death certificate should arrive any day now.

As we prepare for our first Christmas without him, I've searched for meaning in his ordeal. In his memory, I offer you this gift of advice: have a conversation with your doctor like the one I recently had with mine. Ask him or her directly: If I wind up in the hospital, will you come to see me?

If they won't, find yourself someone who will.

Never, by the way, did the surgeon who performed George's bladder surgery call to check on him.

Perhaps now he'll know the surgery wasn't a success.

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