Sick To Death > Chapter 2 > Perspective: Quality Comes Home

Sick To Death book cover This extract from the online edition of Sick to Death and Not Going to Take It Anymore! is used with permission.

Perspective: Quality Comes Home

Donald M. Berwick

My father was a retired physician in rural Connecticut. For 42 years, he provided care as a general practitioner in the tiny town in which I grew up. Then he retired and found himself no longer giving care but receiving it. I do not know what he thought of health care reform. By the time the national issue became popular, my father was mentally unable to comprehend the debate. . . .

He was the guy who got up in the middle of the night because Jimmy had a high fever, or Mr. Bernstein had a heart attack, or an awful car accident occurred at the drawbridge. . . . When I attended my 30th high school reunion in 1994, I was still Dr. Berwick's boy. People could not wait to remind me of the time my father delivered their baby or themselves, or sewed a wound, or answered a tough question. They called him a great doctor. He was always there, they said. You could count on him.

My father retired in 1984 and not long afterward began developing symptoms of Parkinson disease and mild dementia from small, multiple strokes. He remained alert but became progressively weaker until he fell at home and broke his hip in June of 1994... .

One of my brothers, who lives an hour from our father's home, rushed to the local hospital to meet him in the emergency department. He was told - in error - that our father was not there. Panicked telephone calls followed as my brother searched anxiously for our father's whereabouts until, finally, someone told him that our father was there, after all, and was about to be wheeled into the operating room.

After surgery, my father lay sedated on a special mattress containing sections that alternately inflated and deflated. Within a week, he had a deep pressure ulcer on his right heel. It was painful and interrupted his early ambulation therapy. He became restricted to a wheelchair for most of the day and gradually refused to walk at all. Unable to return home, my father needed to go to a rehabilitation facility....

I visited him there on the morning after his admission. He was lying stuporous in the bed, on his back, with his ulcerated heel pressing into the sheets. His mouth was hanging open, and his eyes were rolled back into his head. I asked the nurse for an explanation. "We sedated him," she said. "He was combative. He hit a staff member." For 10 years, my father had had severe Parkinson disease, and for most of that time he had been unable to voluntarily extend his own arm, much less throw a roundhouse punch. My father had undoubtedly been angry, yes. But a punch . . . no. I demanded that the sedation be stopped.

Not that it mattered much. For reasons that never became clear, the medication he took for Parkinson disease, meticulously adjusted for 2 years by his physician at home, was summarily stopped when he was admitted to the rehabilitation facility. This resulted in a 2-week siege of spasm and much decreased mobility. Not that that mattered much, either. By then, the pressure sore on his right heel had opened again, causing pain that prevented him from walking or even spending much time in a wheelchair.

Not that it mattered, because when my brothers and I asked that our father be placed in a wheelchair whenever possible, the nurses on the weekend shift told us that no wheelchairs could be found. They asked that we bring in his rickety old wheelchair from home. They eventually did find a wheelchair, but it was missing the footrest plate that would have protected his injured heel from bruising.

My father spent 6 weeks in the rehabilitation facility and then gave up, as did the staff. He returned home to a hospital bed and around-the-clock housekeeper coverage. Two weeks after he returned home - almost entirely bedridden and almost certainly never to walk again - a wheelchair finally came: the latest model, with postural supports, custom back rests, and hand controls he could never use. It was beautiful. The price: $6000. It sat proudly and nearly totally unused in the corner of his bedroom. . . .

My father did not care. He was in bed with a pressure sore, staring at a wheelchair he did not need and living with the undeserved memory of insult, delay, and medically induced coma.

If we cannot work together on improvements that matter to those who call on us for help, then we have no cause to take pride in our restructuring, our mergers, our integrated systems, or our report cards. I propose that we take aim where it matters. Pressure sores are the enemy. Stop them. Errors in drug use are the enemy. Stop them. Fragmentation is the enemy. It creates waste, cost, and disrespect. Stop it. It was my father this time, but next time it will be your father, and then you, and then your child. I have heard it said by cynics that the quality of medical care would be far better and the hazards far less if physicians, like pilots, were passengers in their own airplanes. We are.

Adapted with permission from Berwick DM. 1996. Quality comes home. Ann Intern Med. 125:839–843.