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A Piece of My Mind
April 12, 2000

The Old Man's Friend

Author Affiliations
 

A Piece of My Mind Section Editor: Roxanne K. Young, Associate Editor.

JAMA. 2000;283(14):1793-1794. doi:10.1001/jama.283.14.1793

Increasingly, my days are cluttered with busywork. It almost seems as if there is a great conspiracy to distract my fellow physicians and me from the important things we do. Not all doctors would agree on how to define the term important. I, for one, relish those rare moments when I can help a patient or family at a crossroad.

So it was for Agnes and Joe.

One of my partners had admitted Joe to the hospital the previous evening for yet another bout of bronchitis. Joe had severe, oxygen-requiring chronic obstructive pulmonary disease, cor pulmonale, and right-sided heart failure. The quip around my office was that Joe had only three alveoli left and two of them were infected. Joe had lived with COPD for nine years. Five years ago, he began to be increasingly forgetful. The passage of time made it clear that Joe also had Alzheimer-type dementia.

As I reviewed Joe's chart in preparation for my visit, my thoughts were more on Agnes' and Joe's shared values than on his disease. The couple belonged to the generation that had been born during the Depression and had come of age during World War II. As a baby boomer who grew up at a different time in our culture, I have struggled to understand the central values of that age cohort. As is typical of their generation, Agnes and Joe were devoted to each other, their families, and their work. They valued tradition. They expressed their beliefs through their actions rather than through words.

I was the family doctor for both Joe and Agnes. I knew Agnes better because I had almost daily contact with her through work. For the past 42 years, she had been a receptionist for our hospital (now a health system). She and Joe had been married for almost 40 years. She was devoted to Joe and would do anything for him. Agnes and Joe were childless, which seemed only to have drawn them closer to each other and to their large extended family.

Caring for others was deeply ingrained in Agnes. Her older brother was only 17 when he was left with permanent brain damage as the result of a car crash. Ever since the crash, Agnes had helped her mother provide the extensive care her brother required. But Agnes' mother had become old and frail. When she was not at work, Agnes spent every waking moment caring for her husband, her mother, and her brother.

Unfortunately, most of my contact with Joe occurred after he became disabled with COPD. Still, I easily recognized that Joe had a strong work ethic and valued self-sufficiency. He was happy to offer his help to others but reluctant to accept help for himself. By mutual consent, Joe had been the main decision-maker for the family. Of late, Joe's dementia had thrust Agnes into the uncomfortable role of having to rely on her own judgment for important decisions.

I also learned that Joe had been a fireman for a small community on the outskirts of our city. He had poured his heart into the department and had risen through the ranks to become its chief. In recognition of his years of service, a new fire station had recently been dedicated in his honor.

I knew before I entered the room that I would find Agnes at his bedside—she felt that it was her place. I greeted both Agnes and Joe. Agnes welcomed me as an old friend. Joe no longer recognized me or, for that matter, Agnes.

Joe had always been tall and lean. The wasting caused by COPD and dementia had left him with a gaunt, bladelike appearance. Now, he was stuporous with fever and hypoxia. I briefly examined Joe, then suggested that Agnes and I talk in the solarium. It was a beautiful morning in late spring, so we sat on the rooftop patio.

"What's going on? What do you have to tell me?" Agnes began anxiously.

Of course I had something to say about Joe's condition, but now was not the time. "Tell me, what has Joe's life been like over the past few months?"

She drew a long, deep breath. As she slowly exhaled, her expression changed from anxiety to sorrow. "I guess you could say he doesn't have any quality of life left. He doesn't recognize me anymore. He gets so confused when the nurses or I try to get him to use the bathroom. We've almost given up trying. He's unsteady on his feet—even on good days. He doesn't have many good days any more. I don't think he'll be able to walk much longer."

"That's such a shame. Joe was always such a strong, independent guy."

"Oh, he was. If he knew, he'd hate this. But he doesn't know anymore. It's as if he's not really Joe anymore."

I asked, "How are you doing?"

She replied as I knew she would. "I'm OK. It's hard at times. But I will manage."

"Do you think Joe is uncomfortable?"

"I'm not sure," she replied. "He fights the breathing treatments. He doesn't really sleep either, just catnaps. He gets pretty agitated when anyone tries to do something for him. But I don't think he's hurting."

Now it was my turn to take a deep breath and answer her original questions. "Joe had some pretty firm ideas about how he wanted to be treated. That's why he signed that living will and No Code five years ago." I paused to take hold of her hand. "I don't think Joe would want this."

She looked at her shoes and slowly nodded in agreement. I wanted to choose my words carefully. I knew Agnes could absorb any blow that life dealt her, but she would need my support and permission for the decision she now faced. As a selfless caregiver, Agnes would never choose the easy path for herself; she would do whatever was best for Joe.

"Until now, we've treated each of Joe's infections with antibiotics and intravenous fluids. We could do the same again. But I don't think that is what is best for Joe—this is not the life that Joe would want. I think it's time to let nature take its course. I don't think we should give him IV fluids or antibiotics. He may come around or he may not. I will make sure he is kept comfortable. I won't give him any treatments that upset him. Of course, this is your decision. But this is what I recommend. How does that sound to you?"

Tears began to roll down her face. Agnes paused for a long time before saying, "I know what you say is right. I trust your judgment. It's just so hard. I only want what's best for Joe."

"What about the rest of the family? How do you think they will be with this?" I asked because one niece who worked for a multispecialty group in town had always wanted a second opinion. Cardiologists, pulmonologists, and neurologists had seen Joe at the niece's urging. I wanted to be sure that no one would make Agnes feel guilty for not getting more consultations before making this decision.

"I think that the last six months has helped everyone in the family understand just how sick Joe is. I'll check with everyone, but we all know that it's his time."

Neither of us spoke for several minutes. The pause was deliberate on my part. I did not want Agnes to think that I had to hurry off. After giving the solemn moment its due respect, I said that I'd better write some orders. Agnes, in turn, said that she'd better get back to Joe.

After our meeting, things seemed to fall into place. Joe's and Agnes' family rallied around his bedside. Not a dissenting voice was heard. One week later, the "old man's friend" came for Joe. He died of pneumonia on our inpatient hospice unit.

At his funeral, I heard a litany of familiar values in Joe's eulogy. He was kind, a family man, hard working, self-reliant, a loving husband, a caring supervisor, a good neighbor, and a dedicated professional. I felt like an outsider. I had known Joe only in sickness; others remembered him in health. As the mournful sound of bagpipes filled the air, an honor guard of firefighters in their dress uniforms saluted the pallbearers who carried Joe's casket from the hearse to the gravesite. From a distance, I could see Agnes. Despite her tears, she would be fine. I knew she could deal with the hard times.

There are many physicians, like me, who specialize in continuity of care. A single board does not certify us. Our unique expertise is the accumulated understanding of our patients; not merely of their diseases, but of their lives. With that understanding comes trust, slowly developed over the years. We treasure the special moments when a trusting relationship is what patients and their families need most to reach an important decision. These moments sustain me and keep my passion for medicine alive.

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