Archive Page 186

Finding the Way

As a child, dozing in the back seat during long drives back to my Grandmother’s house in our old home town, I would look out the car window and ask:

“How can you find your way?”

My mother always answered, “We just do”.

Returning to the U.S. ten years ago, after a summer sojourn at camp and a train trip to the Arctic Circle, my wife and I needed a ride to the train stop on the outskirts of town. The express trains bypass the small city on the far outskirts of Stockholm, and travelers have to make it up on a platform on a large railroad bridge, visible in the distance from my parents’ apartment.

My father drove and my mother co-piloted their Volvo. He seemed to have trouble finding the way, so my mother reminded him that they had been there just recently. We were right near the newest shopping center. He eventually got us to the train stop, not quite recognizing any of the landmarks along the way.

Many years before, my mother had asked me to promise that if anything happened to either one of them, I wouldn’t put them in a nursing home. I answered her with a question: How can we predict now what will be the right thing to do in an unanticipated situation years down the road? She accepted my unwillingness to predict the future.

As it became obvious, years later, that my father had dementia, my mother adapted to their new circumstances. She learned how to care for him, reluctantly also letting strangers into their home to assist her. When his disease advanced, she found her way to acceptance of a nursing home placement for him.

Every day my mother went to visit my father at the nursing home. At first she walked, resorting to riding the bus only in bad weather. Over the course of his years on the dementia ward, she started using a walker, but still climbed on board the noon bus every day to spend the afternoon with my father.

She always found a way to see him, sometimes took a taxi, sometimes even got a lift home from the staff when no taxis were available. The nurses and aids became part of our extended family, caring for my father as if he were their kin.

My mother has always praised the nursing home and the care they provide for my father. She knew in her heart that she had done the right thing by making the choice she said she would never make.

My father never complained. He seemed puzzled why my mother wouldn’t stay for supper and overnight, but he delighted in her arrival every day. He was never restless, never frustrated. As the years passed, he stopped speaking and gradually stopped moving his limbs. He stopped feeding himself and soon also stopped swallowing even pureed foods. Soon, even liquids wouldn’t go down.

Searching online for flights to Stockholm, I found my way back in time to sit by his side, hour after precious hour. As I listen to his respirations, the physician in me registers the significance of their waxing and waning, the son hears his dad still breathing, still with him.

My father was never very demonstrative with affection, although I never doubted his love for me. I, in turn, didn’t tell him often enough that I loved him. Last night, as the hours passed, I held him and told him again and again what a good father he is, how proud I am to be his son, and how much I love him. His blue eyes softened and kept looking right at me with an expression of peace and contentment.

You are sleeping peacefully now, Dad, and I have told you that everything is okay. I have told you that you can hold on or let go, either way. I have told you that I will always love you.

At my age, I am still learning things from you. I am learning patience and acceptance, seeing how you handled your fate.

Whatever happens to me next and down the road, Dad, I hope that just like you and Mom, somehow, I will always find the way. 

The Long Journey

I woke up somewhere over England. My mouth felt like I had walked through a desert sand storm. Everyone else in the cabin was asleep and the stewardesses were not within my eyesight. I waited silently for them to start the breakfast service. When, after an eternity, they did, I asked for a glass of Seltzer water, downed it and asked for another. I had a third, and orange juice and coffee within short order.

The Stockholm airport, the rental car place, the Volvo wagon and the highway hadn’t changed much. My father, now bed-bound and nonverbal, had.

As I entered his room, so familiar after three and a half years in the dementia unit, I saw a face that was radically changed from my last visit. No longer able to eat, barely taking sips of fluids for the past week, the father I greeted was even thinner than I had understood from my mother’s description.

His eyes locked on to mine and his lips moved in the way I was told they always move, but they made the movement you would make if you say my name in Swedish.

The nurse affectionately stroked his head, combed his long, silver hair and offered him Seltzer water from a heavily soaked oral sponge swab. Again and again, his mouth closed eagerly around the swab and he sucked hard on it and gulped down the still slightly fizzy liquid.

For half an hour, my father never took his eyes off me. Over and over his lips formed my name. I told him I was well, explained why my wife wasn’t able to make it this time, told him about his grandchildren and great-grandchildren.

Finally, he fell asleep with my hand on his. Every once in a while he woke up, looked straight into my eyes with his sunken-in, clear blue ones. He looked restless. I told him I loved him and told him what I had heard about my mother’s condition. It wasn’t until I said I was doing well and that I was happy that he finally seemed to relax.

I spent a few hours with my father before driving over to the hospital to see my mother. I drove through the town where I was born, where I lived for the first six years of my life and always returned to visit my parents after they retired in 1986. They chose to move back ‘home’ to where they spent their youth and where all their family still lives.

I happened to pass the pink stucco apartment building that housed my preschool; it is now a funeral parlor. I still remember walking across town to preschool there.

At the hospital, my mother, too, looked little. We kissed and hugged. She asked about my father, cried and thanked me for stopping there first.

The first leg of what seems to hold the promise of being a very long journey for the three of us is over.

The Call

I got the call again tonight. It’s always the same:

“Hello, Doc, Officer Moran here. We have an unattended death…”

The patient’s age, gender and circumstances aren’t predictable, but it’s always the same story. Once again, someone died, who wasn’t supposed to die.

I never get used to getting these kinds of calls, even after all these years. They wake me up early on Saturday mornings, they come in the middle of a late supper, they come while I work and when I rest.

An unemployed sixty-two year-old woman on pain medications is found dead in her bed one morning; a successful businessman dies suddenly behind the wheel of his Mercedes near the golf course; a father, who lost his parental rights in a divorce, is found hanging from the rafters of his barn.

These calls last only a minute or two, but their effects linger and accumulate, one by one and over the years. They are different from losing patients to illnesses that span over time, however short. They offer glimpses into desperate recesses of people’s lives and they announce medical disasters I never saw coming.

Each call stops my day, suspends my own life, while my mind brings forth images of the patient and my last interactions with them. Was there any clue that this could happen? Did I do everything I could with what I knew at the time?

I gather my thoughts, register the emptiness, and try to return to where I was before the call came. If I am at work, I must quickly get back to a waiting patient, who expects my full attention. At home, my family understands and gives me latitude. It does take time to work through the emotions after these calls, even after thirty years in this business. That’s probably a good sign.

Fearing the Worst

Seeing George Hess last Friday, I almost gasped as I registered his dramatic weight loss over the last four months. His complexion was pasty, his cheekbones protruding and his eyes sunken, yet intense with an expression of anguish, framed by dark circles.

He seemed tired and not himself. He barely spoke at first. Harriet, his wife, listed all the symptoms George had developed since I last saw him: severe, unrelenting back pain at first, followed by steady abdominal pain, loss of appetite and later intense nausea with vomiting with most attempts at eating.

George was always thin, but now he looked cachectic after losing more than twenty pounds. His eyes showed no jaundice and his urine and bowels had normal color. His back wasn’t tender, but his abdomen was tender just about everywhere, yet soft. I couldn’t feel his liver, spleen or any tumors.

“You’ve got to help me”, he said in a quiet voice. “I can’t go on like this”. Even when he was quite ill last year with diverticulitis, he had not looked or acted like this.

“We need some bloodwork right away and then some x-rays. We should know by Monday or Tuesday what this is”, I said. In my mind I wondered if this was yet another case of pancreas cancer. I have seen several in the past five or six years. My wife, in her entire career, has never seen one.

I prescribed some pain medication and something for nausea and sent George to the lab. I needed to know if his kidneys could tolerate the CT scan contrast and I wondered if he was anemic and what his liver and pancreas chemistries would show.

By the close of business his blood test results were back – all normal, except nearly borderline kidney function for using contrast. We couldn’t get a CT scheduled until late Monday. I worried over the weekend what was the matter with George. I even described the clinical scenario to my wife over dinner as I reviewed in my mind what I knew so far about George’s case. She thought for a moment, then asked if the patient still had his gallbladder and wondered if I had considered ordering a gallbladder ultrasound before thinking pancreas cancer and CT scan.

“He just looked too sick, and his eyes had that intense, terrified stare all my other pancreatic cancer patients have had”, I explained.

Yesterday the radiologist called me and said he wasn’t comfortable using contrast. By his calculation, George was just under the creatinine clearance limit.

“Do it without contrast then”, I said. “You’ve got him there, and maybe we’ll see something.”

The rest of the afternoon went by and I didn’t hear anything from the x-ray department.

Mid-morning today the report came in. The CT scan showed no evidence of any tumors or fluid in his abdomen. It did show that in comparison with last year’s scan, George’s gallbladder was significantly larger, but no gallstones were visible. The radiologist suggested an ultrasound to better assess for gallstones.

I guess my wife was right in reminding me of one of my own favorite expressions: Common things are common.

Playing the Odds

Much of what we do today in medicine isn’t treating diseases, but manipulating risk of disease.

Two people with the same elevated cholesterol value may be treated differently because their other risk factors for heart disease are different. A 65-year-old smoker with diabetes and high blood pressure is statistically more likely to benefit from cholesterol lowering medication than a younger, healthier person. Both these people can lower their heart attack risk by 50%, but, in the case of the younger, healthier person with an already low risk of heart disease, 50% of nothing is nothing. One of the findings of the recent JUPITER study was that lower risk patients could also reduce their heart attack risk by lowering their cholesterol. The question is whether they should be treated, since their risk is already low.

The way I explain this to patients is with lottery tickets and rebate coupons.

“If I buy a megabucks ticket and you buy two, you will have twice the chance of winning that I have, but you probably shouldn’t start spending your money yet” usually gets a nod or a smile.

That example illustrates relative risk. Just like in the example with one or two lottery tickets, relative risk isn’t enough to make a treatment decision. You need to know the absolute risk. For example, who would wear an insulated rubber suit just because it reduces your risk of getting hit by lightning while walking your dog by 60%? Most of us would probably say, “No thank you, I’ll take my chances”.

The Framingham Heart Study provides a simple risk calculator for heart disease. With it, I can show patients their relative and absolute risk of disease in the next ten years. I can then show them the impact of reducing that risk by lowering blood pressure, quitting smoking or treating cholesterol.

Our middle aged diabetic, hypertensive smoker may be facing more than 20% risk of getting a stroke, heart attack or a symptomatic blockage of a coronary artery, while the younger, healthier person may have only a 2% risk of disease in the next ten years.

Which one of these patients to treat for their high cholesterol might be illustrated with a question of when you would rather use a “50% off” coupon – buying a cup of coffee or buying a new car?

Let’s look at the wisdom of treating both the low risk and the high risk person for their high cholesterol in order to reduce their heart attack risk by 50%:

If we treat 100 patients with a 25% 10-year heart attack risk for ten years, only 12 would have a heart attack instead of 25. Treating 100 patients for ten years would prevent 12 heart attacks. You would therefore have to treat 8 patients to prevent one heart attack. We call this the Number Needed to Treat (NNT). An NNT of 8 is a pretty good deal.

For patients with a 2% heart attack risk, we would have to treat 100 of them for ten years in order to avoid one heart attack. An NNT of 100 is clearly very different from an NNT of 8, so “50% risk reduction” really doesn’t tell us much if we don’t know the absolute risk.

Here are some more or less surprising examples of the number needed to treat:

  • Shingles vaccine doses given in order to avoid one case of shingles: 59.
  • Ear infections treated with Amoxicillin to avoid one ruptured eardrum: 20.
  • 65-69-year old women treated for osteoporosis to avoid one hip fracture: 88.
  • Cortisone shots to relieve one sore shoulder: 3.
  • Aspirin prescriptions to prevent one heart attack: 200.
  • Prostate cancers treated in order to prevent one death: 18-48 (most men with prostate cancer don’t die from their disease)
  • Adenomatous colon polyps removed to prevent one colon cancer: 50 (only 2% of “precancerous polyps” actually turn into cancer)

The Number Needed To Treat is not popular with the makers of many of today’s blockbuster drugs. In the case of symptomatic treatment, like heartburn, bladder spasms or pneumonia, patients can more easily judge whether a medication works or not. With risk reduction, we’ll never know ourselves whether we wasted our time and money or not.

As physicians we should not accept claims of relative risk reduction without knowing the absolute risk and the Number Needed To Treat.

I remember people in Sweden talking about a book in the sixties, titled “Hur man ljuger med statistik”. The author, it turns out, was American. Darrell Huff’s “How to lie with statistics”, first published in 1954, is still in print. No wonder; statistics are still being used to trick people, including doctors and patients.


I just realized none of the posts show on an iPad or a computer, but they do show on an iPhone. WordPress is working on this. In the meantime, please visit my Substack.

 

 

Osler said “Listen to your patient, he is telling you the diagnosis”. Duvefelt says “Listen to your patient, he is telling you what kind of doctor he needs you to be”.

 

BOOKS BY HANS DUVEFELT, MD

CONDITIONS, Chapter 1: An Old, New Diagnosis

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