"Dad always was a fighter"

Every protocol said to give up on this patient. It took a while for the author to understand why the family refused.

By Warren R. Garr, MD
Family Physician/Howell, MI

The phone's incessant ring awakened me from a deep sleep. Groggy, I heard the ER resident report on an elderly patient I'd inherited from a previous resident in the family practice program. The patient was an elderly man with end-stage Alzheimer's who'd been hospitalized just two weeks earlier for pneumonia. He was back now, with the same diagnosis, except that he sounded more desperately ill. "You'd better come in soon and make some decisions. These gases are really bad, and you need to discuss code status with the family."

I washed up and walked across the street to the ER. It was 3 am, there was some chill in the air, and it had been drizzling all night. The street had a sheen, and the street lamps had halos surrounding their dirty yellowish globes. I entered the relative brightness and warmth of the ER and saw the faces of Mr. Black's family. He'd lost his wife many years ago, and during his previous hospitalization I usually spoke with his daughter.

This time there were several relatives I had never met. Their faces conveyed the gravity of the situation. I greeted them, made nervous eye contact with the daughter, and—feeling powerless—expressed my sorrow at the seriousness of the problem.

"Thank you for coming, Doctor," she said. "Our father thinks very highly of you, and we place a lot of confidence in your decisions. We know that you'll do everything possible to help him through this." Really? I was surprised, since Mr. Black had always been completely uncommunicative with me. He was a total care Alzheimer's patient, requiring assistance with almost everything. He never seemed to initiate any activity.

I thanked them for their confidence, then excused myself and went to examine Mr. Black. His condition was indeed grim. Dry lips, low consciousness. "I don't know why these families wait to the last minute, then expect us to work a miracle," the intern lamented. "This is one old guy on the verge of checking out. Can you get him up to the floor quickly, before he codes here and I have to do the paperwork?"

On occasion, Mr. Black restlessly moved his arms, but he was unresponsive to voice or touch. Shallow and rapid respiration, 104 temp, and a BP of 80 systolic. His labs were even worse: a WBC of 20,000 and blood gases revealing a significant hypoxia with acidosis. Dejectedly, I took this information back to the family with the thought of advising a "comfort measures only" admission—and a vigil, to wait for the inevitable. It couldn't be more than a few hours away.

I was taken aback by their response: "Dad always was a fighter, and he would want everything done to get him through this. We want you to do all you can to save his life." This would involve some highly uncomfortable measures, I explained—such as respirator, Swan-Ganz catheter, multiple needlesticks, and a wide variety of procedures that Mr. Black couldn't possibly understand. But the family was adamant about wanting full-code status. I could only imagine what the house staff would say.

What to do?

I really had no choice. They were very clear about their decision, so I admitted Mr. Black to the ICU. I consulted the appropriate specialists to assist in monitoring him, then went home to catch some sleep before the fireworks.

It began at morning rounds, where the night's new admissions are discussed. "Dr. Garr, are you aware of the cost of your decision? Don't you realize that there is only so much money to go around, and that perhaps other patients will have to do without? Don't you realize the pain and suffering this man and his family will go through—and that he'll probably die soon anyway? Even if he lives, with his level of Alzheimer's he's hardly what I would call a salvageable life. I hope you can live with your decision and the path you have chosen for Mr. Black."

The negative response was endless. I tried to make the senior residents aware that I had discussed these issues with the family, but they wouldn't hear me. After rounds, I went to check on Mr. Black.

He was no longer restless. His parameters had stabilized in a more acceptable area; his O₂ levels had improved and his hypotension had eased with fluid and some low-level dopamine. But he was still pretty fragile. I relayed this to the family members, all of whom had waited through the night. It made them hopeful. Their positive outlook impressed me, but I tried to make it clear that recovery wasn't likely—and again tried to talk them out of full-code status. They stuck to their decision: "Dad is a fighter. This is the way he would want it."

I received several calls regarding fluid management, respirator settings, urine output, and other such orders that always seem to upset the day-to-day management of outpatient care. I really wished that all I had to do was monitor Mr. Black, and that my clinic patients would leave me alone. But that's never the way things happen, of course.

I kept thinking about Mr. Black's family. They were an interesting mix, very intelligent and caring. No problem understanding my thoughts about his condition. Why couldn't I convince them that the best treatment course was comfort only? These were his last few days. Why choose hell—the tests and needless procedures that probably wouldn't work—for him? It was hell for me, too.

Surprisingly, the old man survived the day, and as I rounded on him he was moving and twitching his upper arms and flinching his face. His vital signs were improved, but fever remained a problem. His temperature was 101, and he was covered in sweat.

Suddenly, I realized what he was doing. His movements showed a pattern. He was boxing! With a chill, I realized that his family was being literal when they said he was a fighter. Just then the daughter came in and sat next to her dad.

"You've noticed," she said. "In his younger years, Dad was a boxer. He had a manager and traveled the country. He made enough to buy an 80-acre farm and settle down with Mom. Boxing was something that gave him inner strength. It was a type of benchmark for him. When things got difficult, he would often relate it to how he felt in this or that fight, and how he eventually prevailed. Boxing got him through many hard times." In-deed, here he was, battling his pneumonia by drawing on that very inner strength.

Gradually, I learned his story from his children. It turned out that Mr. and Mrs. Black had raised three biological and eight adopted children. I heard stories of the sacrifices they had made to raise such a brood and set them on their way toward successful lives. Mr. Black, his children said, often went without so they could have books, music lessons, a prom dress, a college education. He himself hadn't finished the eighth grade. He had always been strong and healthy, but after his wife died his mind and body began to fail.

"Recently, he lost interest in eating, and just sits and stares," the daughter went on. "You know, he doesn't talk anymore with his voice. He talks with his hands." At this point, she took his hand and lifted it to me. I felt his fingers gently grasp mine, moving gently yet firmly across my palm. "Dad, this is your doctor." With that, his fingers perceptibly tightened around mine, and I realized that, on some level, Mr. Black was aware of his surroundings.

As the days moved on, Mr. Black was extubated and moved from the ICU, but he remained unwilling to take anything orally. I discussed the options with his family. We decided on a gastrostomy tube, and the surgeon agreed that this was the best course of action.

I suddenly realized that my earlier timidity and self-doubt were defense mechanisms for not having enough facts to make an accurate evaluation. I was amazed how different the world appears, once the correct course of action is found. Indeed, I was shocked at how insensitive and uncaring a system can be, and how physicians' prejudices can do a disservice to patients and families.

Slowly, Mr. Black came back to baseline, and he was discharged to an extended care facility. His family remained very devoted. On rounds, I'd often see one of them holding his hand. At times he even had a smile on his face. I'd stop at his bedside and hear another story of how he had helped someone with this or that problem and how self-sacrificing he was. When we were alone, I'd take his hand, feel those fingers travel over mine, and draw comfort and strength.

This situation continued for about a year, until the morning he pulled out his feeding tube. I was surprised that this time the family, when given the option of reinsertion, declined. They felt he had made a decision by pulling the tube out. They made their peace. Mr. Black lived about three more days and passed on peacefully, with his family nearby.

After the experience of caring for Mr. Black, I became more aware that first impressions aren't always correct. I also now understand that the patient's family—not the medical staff—is often the most reliable source of information about him. And there are times when making the right decision contradicts one's training. The decision to aggressively treat Mr. Black was perhaps the wrong one for the medical community, but it was the right one for him and his family.

 

Warren Garr. "Dad always was a fighter". Medical Economics 2000;9:110.