I couldn't let the patient die—not yet

Too much unfinished business, the author thought. But when death was near, was he right to intervene so forcefully?

By Farrin A. Manian, MD
Internist/St. Louis

The operator paged me for an outside call. Usually that meant a physician or patient I didn't know. I answered fully expecting to hear a stranger's voice.

"Farrin, this is Guy," the caller said.

My brother-in-law? Why is he calling me at work?

"I need a referral to an internist."

Guy sounded calm, but he didn't bother with small talk. And the request was odd coming from him—a healthy 40-year-old who didn't like going to doctors. For years, in fact, Guy had even refused to carry health insurance. ("Expensive," he'd complain, "and most young people never need it.")

I gave him the name of an internist, then hesitated. "Is something wrong?" I asked.

Long pause. "I feel fine, but about a month ago I found a lump in my breast, and it's not going away." Guy added that the lump was the size of a small egg, but not painful.

I encouraged him to see the internist soon while trying not to sound overly alarmed.

After the call, I couldn't help but wonder about Guy's problem. Did he have cancer? Preposterous! After all, what are the odds of a 40-year-old man getting breast cancer?

Even if he had cancer, it could still be totally resectable. But then there was the size. If it really was the size of a small egg, the outlook dimmed considerably.

I couldn't know at the time that Guy's phone call would trigger a two-year ordeal that would change his relationship with his family, and my view of how to treat terminally ill patients.

Guy keeps his grim prognosis to himself

A few days after Guy's referral, I received a call from his internist. He had arranged for a biopsy. Any hope of a benign lump began to evaporate.

Guy had the lump removed in the outpatient department of our hospital. Although I've often heard the remonstrations against involvement in the care of sick relatives, I felt obliged to guide Guy through the medical maze that awaited him. I called the pathology department the next day. The lump was malignant.

I contacted Guy's surgeon. He hadn't yet reviewed the pathology report, but promised that he would call Guy that night with the results.

Guy hadn't told his family about his breast lump or his recent surgery. So my sister found out about her husband's condition when the surgeon informed her over the phone that his biopsy showed cancer. This was also the first time that I realized just how reticent my brother-in-law was when it came to familial communications.

It wasn't a complete surprise. Ever since he had completed high school, Guy had been very intent on becoming a success. He immersed himself in work, and it often kept him away from his family. Deft at playing the stock market, he'd parlayed his well-chosen investments into a little nest egg for his family. He was often distracted by nonfamily matters.

Even so, how could he not tell his wife and children about the surgery? Did he not want to worry them? Or was he, like many career-driven men, simply a stoic, accustomed to bearing up silently? It was a mystery to me.

The following week, Guy underwent mastectomy with axillary node dissection. The post-op report was worse than the biopsy's: Several of Guy's lymph nodes were cancerous.

During the ensuing weeks, I often stopped by Guy's house after work to check his progress. Our conversations revolved mainly around treatment options. He seemed emotionless in my presence, treating his illness more as one of life's inconveniences than as a real threat. He initially refused chemotherapy, claiming, "It's only going to make me sick, and it won't help anyway." He was suspicious and at times distrustful of physicians.

I reminded him of the gloomy survival statistics of males with breast cancer when it involved the lymph nodes and urged him to receive chemotherapy. He finally agreed.

Guy seemed not to be fazed by his chemotherapy and continued to work long hours. He wouldn't discuss his diagnosis with people at work. He was particularly uncomfortable with divulging that he, a robust 6-foot, 3-inch male, had breast cancer. He seemed to think that revealing his diagnosis and discussing his recent mastectomy would somehow make him less of a man in the eyes of his co-workers.

A few months after completing chemotherapy, Guy began to complain about pain in his back and hips. He blamed it on the treatment, steroids, his medications—everything but the cancer itself. He went in for another evaluation.

A bone scan—normal just a year earlier—now revealed that the cancer had spread to the hips and spine. Guy now needed different chemotherapeutic agents, radiation therapy, and pain control. For the first time, he began to realize that his life might actually be threatened.

Not long after this development, I received a frantic phone call from my sister. Guy had become very agitated over a trivial issue, she said. He'd left the house, threatening not to return.

I went to my sister's and found her and her children tearful and distraught. I gently told them that, as a physician, I had seen many terminal patients behave similarly, out of frustration and fear. I reassured them that Guy still loved them and would come around soon. He just needed some space to ventilate his feelings.

They seemed to understand.

The following day, my sister called to report that Guy had returned—and settled down. But her next comment threw me. After I'd left the house, the kids, ages 11, 13, and 15, had asked her what "terminal" meant.

I realized that Guy had not yet discussed the severity of his disease with his children. Was his failure to broach this matter a sign of extreme denial, extreme optimism, or parental protectiveness?

The pressure builds as the cancer spreads

Guy had no sick leave or disability insurance, so he continued to work, maintaining his grueling schedule. He soon fractured his hip and willingly underwent surgery for hip replacement. Post-op, he spent some time on the rehabilitation ward and was extremely proud of his ability to become ambulatory again. He returned to work with crutches.

At first, I couldn't understand Guy's constant need to work. Then it dawned on me that his sense of responsibility for the financial security of his family was growing ever more urgent. Still, if he was intent on providing for them financially, he remained ever reticent when it came to his feelings. My sister and her children suffered quietly with him, each covering his or her personal anguish under a blanket of silence.

Several months later, Guy was rehospitalized for shortness of breath and weakness. Despite his compliance with aggressive treatment, tests showed widespread metastases involving his liver, lungs, pleural space, and even one of his eyes. I began to spend a little time with him in his hospital room each night before going home, and, gradually, I learned more about him. It became apparent that his supposed composure in the presence of his physicians and nurses belied a great fear and anger that he couldn't freely express—except for the occasional outburst in front of his family.

One day, exhausted and desperate, he told his wife and kids to go home; he did not wish to see them anymore. This was the day that his oncologist had delivered the most dismal news yet. "Your prognosis is extremely poor," he had said simply.

Guy insisted on receiving another round of chemotherapy with a different agent, although everyone doubted that he would live another month. In light of his disease's advanced stage, the nurses tended well to his palliative therapy. But these measures seemed only to upset Guy. "I don't understand why it is that when I say I want 2 mg of morphine, they say, 'No, I think you should take 5 mg.' They seem too happy to push drugs around here."

Clearly, Guy had not thought of himself as a terminally ill patient who should be kept comfortable with generous use of narcotics. He sensed that the house staff and his physicians thought his treatment was hopeless—but he didn't. He objected vehemently when a nurse tried to place a "do not resuscitate" band around his wrist. "I'm not ready to die," he shouted. "I can't leave my kids now!" I found out later that, indeed, Guy had never agreed to a DNR order and that somehow there had been a misunderstanding.

During the ensuing weeks of his hospitalization, Guy seemed more determined than ever to fight against his cancer. When he developed recurrent malignant pleural effusions, he agreed without hesitation to drainage by two chest tubes. "It scares me when I can't get my breath. It reminds me of death and I think to myself, 'How many more times can I live through it?' " he admitted. For the first time, Guy was acknowledging not only the possibility of his death, but also his fear of it.

He insisted on receiving yet another round of salvage chemotherapy, even though it did not seem to be benefiting him. Although my training as a physician pointed to its futility, I couldn't help but wonder whether I would demand the same thing if death were threatening to take me away from my wife and three children.

As it turned out, Guy's fears weren't the only matter he had remained silent on. He'd also been keeping most of his financial affairs secret, and as they gradually began to surface, the task of unearthing all his hidden assets and loans grew more daunting. But Guy still was not ready to divulge any such information to his wife, who had difficulty approaching him on personal issues, never mind financial matters. I could understand my sister's reluctance to broach such a subject in view of Guy's frail state, but I was also convinced that in time, he would simply volunteer it. The trouble was, there wasn't much time left.

A painful decision tests Guy's mettle—and mine

One night, amid what previously had been a relatively predictable and stable disease course, I was called to Guy's room stat. Guy must have died, I feared.

As I rushed into the room, I found an anxious intern standing frozen next to Guy's bed, with my sister and her children sobbing nearby. Guy was unconscious, on the brink of taking his last breath. A call had already been placed to his oncologist, who was reportedly racing to the hospital.

"What do you want us to do?" the intern asked me, nervous. Guy's pupils were pinpoint. Had he been receiving any morphine? Yes, "generous" doses prn for comfort, the nurse replied. I remembered, then, Guy telling me that he wanted to be placed on a ventilator for 10 days before we considered withdrawal of life support. I remembered Guy telling me that he wasn't ready to leave his kids. I remembered how I had hoped that by now Guy would have been able to share his sense of vulnerability with his family and welcome their love with open arms. I remembered that Christmas was just around the corner.

Too much unfinished business, I thought. Guy should not die now.

Immediately, I asked the nurse to give Guy an ampule of IV Narcan in hopes of reversing his severe hypoventilation.

"Give him another half an amp," I ordered impatiently when the first dose didn't faze him. Within a minute of receiving the second dose of Narcan, Guy picked up the pace of his breathing and slowly began to wake up. He looked frightened and started to pull out his IV catheter.

"What are you people doing to me, let me go!" he kept screaming with eyes so petrified they might have just seen death itself. I asked the kids to leave the room and shut the door.

Completely disoriented, Guy tried to free his arms from my grip, but I fought back by throwing the weight of my chest over his to keep him restrained. My sister was in the corner of the room, looking away and sobbing.

"Let him go! He's having pain. I don't want to see him like this!" she pleaded. The nurse, also visibly shaken, looked at me from across Guy's bed. "Look what you did to him," she grudgingly said.

I ignored her comment and kept reassuring Guy that everything would be okay. After what felt like the longest 10 minutes of my life, Guy calmed down. I gently released my grip. Sweat was streaming down my back. My mouth was dry. I felt exhausted.

Slowly, I walked out of the room, wondering if I had really done the right thing. But one glance at the faces of the children waiting outside the door when they learned that their dad was still alive convinced me that I had. These kids were not ready to let go of him yet, either.

A transformation begins to the surprise of all

Following his near-death experience, Guy gradually began to let down his defenses. His kids spent more time with him in the hospital room. He grew closer to his wife, too, and, for the first time in a long time, he told her that he loved her. Slowly, he began sharing information about his life insurance benefits, stocks, and savings accounts. With the help of an accountant, he set up a trust fund for the children. He also applied for Social Security benefits.

As he opened up emotionally and tied up loose ends, Guy became more relaxed and appeared to be at peace with himself and others around him. He looked forward to his children's visits and began to laugh again.

Remarkably, throughout his dramatic transformation (and perhaps in part because of it), Guy got a much-needed break, health-wise. The salvage chemotherapy seemed to work. Guy's tumor marker blood tests improved. He was optimistic and began to talk about summer vacation and going back to work.

Six months after everyone thought he was going to die, Guy went home. He could now be with his kids all the time and still work on his physical therapy. His immediate goal was to get strong enough to repair things around the house. One day I found him sleeping in his bed in the middle of the living room with a greasy chainsaw sitting on a stool nearby. Apparently, he'd been trying to repair the chainsaw—in bed!

His children seemed to enjoy his presence, even though he was essentially bedridden. "Daddy is home again," they proudly announced to visitors. They could now hold his hands any time of the day and gently wipe his forehead whenever he needed it. Or simply sit by his bed for hours and stare at his face, thinking whatever thoughts children think when they know that they are losing their father.

Shortly before Father's Day, Guy was readmitted to the hospital. The cancer had progressed, and he was in pain. His oncologist told him there were no further treatments. Within a few hours of receiving this grim news, Guy lapsed into a coma.

I told my sister that it was time to let Guy go and that he shouldn't be resuscitated if his heart stopped. She agreed. A DNR order was given to the nurses. This time, Guy couldn't refuse the placement of a DNR band around his wrist. Later that day, he began to have labored breathing. The children stayed with him, holding his hands, staring at his face as if they were in a trance. They seemed to feel sorrow much greater than children should know.

By now, the hour had grown late. I asked Guy's kids to go home, assuring them that I would stay and watch over their father. My sister also stayed. We slumped over the rails on either side of Guy's bed, overcome with exhaustion, watching his agonal breathing in the dim light of the hospital room.

There were long periods of absolute silence between us. After two years of watching Guy fight cancer and seeing the impact it had on him, his wife, and his children, I could no longer fight back the tears. I had remained objective about Guy's condition, as if I were his physician. But now I was just like any other grief-stricken family member about to lose a loved one.

In the middle of the night, Guy took his last breath. "He's gone," I told my sister. The fight was over.

Witnessing the ordeal that Guy and his family went through—from both sides of the fence—has made me realize that sometimes we physicians are quick to order liberal use of narcotics for our terminally ill patients to relieve their physical pain—but slow to attend to an equally important source of suffering: their emotions.

Both Guy and his family needed time to accept the terminal nature of his illness and to take care of many unfinished domestic and financial matters before he could die peacefully. How many years of remorse and grief in Guy's wife and children were avoided by adequately addressing their unfinished business before he passed away? Perhaps helping our patients take care of such matters should be a routine part of our comfort measures.

 

Farrin Manian. I couldn't let the patient die--not yet. Medical Economics 2000;10:144.