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Stories of death that teach us how to live

July/August 2000

It was 1977. I'd just finished my first year of nursing school and was facing a few weeks of summer session when we would actually get to take care of patients all day. I was assigned to the oncology unit, which was frightening enough. Worse, Mr. Smith, my first and only patient for the day, was actually dying.

According to the charge nurse's report, Mr. Smith had been abandoned at the hospital by his family, which was unable or unwilling to care for him anymore. And like many dying people, he was constipated and had been put on a regimen of six different laxatives. On top of that, he couldn't speak or swallow. He'd lost his tongue and much of his esophagus to cancer, and a feeding tube snaked through his nose into his stomach.

My job was to give Mr. Smith his laxatives, administered through the tube and flushed with plenty of water. Before doing so, I questioned my hospital instructor about the dosage, only to receive a lecture on the dangers of constipation. When I returned to the room, Mr. Smith looked at me beseechingly.

"Are you in pain?" I asked.

He nodded.

"I'll see what I can do," I said, "but first I have to give you this medicine." I held up the cups of milk of magnesia and castor oil. I managed the tube and the medicine without too much trouble and then checked the chart to see what was prescribed for his pain. Tylenol. Liquid Tylenol. I dutifully gave him the biggest dose he was allowed to have, doubtful that it could touch his pain. Nevertheless, his face softened a bit, and he looked grateful that I had tried. But an edge of pain lingered in his eyes.

I left the room to do some paperwork and returned 15 minutes later to find Mr. Smith lying in a pool of diarrhea. I cleaned him, changed the sheets, and mopped the floor. No sooner was I done than a young resident came in and breezily asked Mr. Smith how he was doing with his constipation. Unable to speak (did the resident know this?), Mr. Smith just stared, obviously exhausted, embarrassed, and still in pain.

"Well, we'll keep up the medication, and you'll straighten right out," the resident said and turned to go.

"Excuse me," I said. "I think you should cut back on Mr. Smith's laxatives. He's been having diarrhea."

The resident seemed surprised by my audacity. He looked at me as if to say, "How dare you?" and walked out of the room.

I spent the remaining hour of my shift sitting at Mr. Smith's bedside, holding his hand. For a few minutes he and I held eye contact, but then, with a little smile, he drifted into sleep. He finally seemed comfortable, and I didn't dare move for fear of waking him. So I simply watched him breathe, slowly and irregularly, until the shift ended.

When I returned the next day, expecting to be assigned again to Mr. Smith, I was surprised to see my name on the roster next to another patient's name.

"Why can't I take care of Mr. Smith?" I asked the charge nurse.

"He expired," she said, using conventional nursing lingo.

"Expired? Oh, you mean . . . he died? When?"

"About 4 o'clock yesterday afternoon."

In other words, an hour after I left. I was stunned. But I was also proud that in some small way I had made his final hours more comfortable, that he had felt some love and connection to another human being before he left this earth.

It was my first experience with death. And though I didn't know it then, Mr. Smith's death helped prepare me for my work with the dying, first as a nurse and now as a chaplain. I continue to work with the dying because I don't want anymore Mr. Smiths out there. I want people to be able to die comfortably and at peace in an atmosphere of love and caring.

I practiced nursing on and off for 18 years, from 1978 until 1996, when I became a chaplain. Over time, I have seen dramatic changes in the way society deals with the dying. In the 1970s, for example, few mechanisms existed to promote the comfort and quality of life of people facing life-limiting illness. With the emergence of hospice care, however, patients began receiving not only basic medical care but also an entire network of supports for themselves and their families that addressed their emotional, financial, social, and spiritual concerns. Major leaps have been made in controlling pain and its side effects: nausea, anxiety, and the ever-present constipation. Hospice also enables people to remain at home or go to a nursing home, rather than being shuttled in and out of hospitals. While hospice has traditionally assisted people in the last six months of life, a new movement known as palliative care is expanding service to include those with long-term, debilitating illnesses such as Lou Gehrig's disease and multiple sclerosis.

Had Mr. Smith been involved in a hospice or palliative care program, I believe he would not have endured such a painful and lonely death.

I am often asked, "How can you do it? Isn't it depressing to be with the dying?" And I have to say, unequivocally, "No."

I learn from the dying how to live.

I found out about Jennifer's imminent death even before she was born. I was working as a maternity nurse in a small hospital and was briefed by the doctors that the birth I was about to attend would be a sad one. An ultrasound done a few days before had revealed that the fetus, a female, was anencephalic. She had no brain. Her head ended just above her eyebrows. She could not live outside the womb.

Before the cesarean, I talked with the parents about what they wanted. Did they want to see her? To hold her? They weren't sure. They worried about her grotesque appearance. "Cover her head," they said at last, "and show her to us."

So the baby was born, and they named her Jennifer. She tried to breathe once and didn't try again. Her heart continued beating as I wrapped her in a blanket, gently covered her head, and took her to her parents. Tentatively they touched her, and as they became more comfortable there in the operating room, they held her. They uncovered her head, and they held her until her heart stopped. Remarkably, thanks to the oxygen in her system, her heart beat for nearly an hour.

Jennifer taught me love and acceptance. She taught me to wonder about the nature of life and death. Had she ever really lived? When had she actually died?

Charles was my father-in-law. For 30 years, he'd struggled with multiple sclerosis, a struggle he had borne with grace. Now he was dying from a mysterious infection that was shutting down his bodily functions.

Three grandchildren had been born that year, and each in turn had been placed in his arms, held up to his face. My six-week-old son was the last. That was in the months and weeks before the fast-moving infection had landed him, barely conscious, in the hospital early one Saturday evening. Some family members kept an overnight vigil, and by morning 17 of us were assembled at the hospital. We hung out in his room--three babies, various parents and aunts and uncles, with the Sunday Boston Globe and New York Times, bagels, orange juice, and coffee. We talked and cried and told stories and played with the babies and walked the halls as we waited--waited for the inevitable--while Charles, now unconscious, lay in the bed.

Charles died that evening, his bed surrounded by people holding and touching him as he took his final breaths. His rigid, disease-worn body relaxed in death, and we were glad.

Charles taught me that a peaceful death can follow a tormented life lived with grace and acceptance. And he gave me my partner-in-life, his son, and for that I am forever grateful.

Thomas, an eccentric fellow in his 50s, had lived here and there, done this and that, lived with several women, and somehow managed to have only one child. By the time his lung cancer was diagnosed, the doctors told him there was nothing they could do. They ordered hospice care, which meant he would receive various medical and volunteer services, and told him he had six months to live.

Thomas was furious. He said he would be fine. The doctors were wrong. He was living with his son temporarily but talked of finding his own apartment. He threw himself into megavitamins and shark cartilage.

Thomas's avocation was archeology. He was writing a book about a Native American tribe. When he wasn't taking vitamins, chewing out his son--with whom he had a troubled relationship--or ranting and raving about his doctors, he was passionately at work on it. The visiting nurses took him to the library to do research and found him an illustrator for the book.

Despite his attempts at self-medication, his disease advanced rapidly. His pain and weakness increased to the point where it was unsafe to leave him alone, and the nurses finally broached the idea of a nursing home. It had been nearly six months since his diagnosis. The book was finished. Thomas, by then extremely frail, reluctantly agreed. That was a Thursday afternoon. Arrangements were to be finalized the next day.

By 4:30 pm Friday, the paperwork was complete, and it fell to me, one of his hospice care nurses, to drive him to the nursing home. I phoned Thomas to tell him I was on my way. In the time it took me to drive across town, however, he had panicked and called an ambulance. It was there when I arrived. The ambulance driver told me that Thomas's blood pressure was low and insisted on taking him to the hospital. I said no. Thomas had already told his hospice care providers he didn't want to go to the hospital.

For seven miles I followed that ambulance, uncertain whether the driver would do as Thomas wished. I breathed a sigh of relief when we turned into the nursing home parking lot.

I arrived at Thomas's side as the EMTs were taking him out of the ambulance. His breathing was irregular and labored. The ambulance attendant had started an intravenous fluid line, and Thomas's body couldn't handle the excess fluid. I could tell he was close to death. We managed to get him to his room, I phoned his son, and for the next 30 minutes I held Thomas's hand as he lay dying, struggling to breathe, pouring out his life story, pouring out his regrets. I wished his son could have been there instead of me, listening to Thomas speak of his love for him, how he wished he had spent more time with him, been a better father. He turned to me and said, "I am really dying, aren't I? This is it, isn't it?"

Thomas, who had been in denial for the six months I had known him, squeezed my hand as I said, "Yes," closed his eyes, and died.

From Thomas I learned the importance of being present with my loved ones--and my self. Now. Today. While I'm alive. While they're alive. I learned not to wait until the last minute to tell them I love them. Not to wait until the last minute to face my own mortality.

Fred was in his 30s when he was diagnosed with colon cancer. Unlike many people in his situation, he didn't seem frightened by the idea of hospice care. In fact, he struck me as courageous when he came to our office to inquire about our services. A charming, funny man, he wanted to go out with style, with grace, with the support of his New Age beliefs.

Several months passed. His condition quickly worsened. He grew emaciated. One day, despairing over his weakened body and his inability to take care of himself, Fred freaked out. He shut himself in a bedroom in the apartment he shared with his girlfriend and refused to communicate with anyone except the hospice staff, whom he began calling every hour in panic, over pain, over nausea, over fear, over his loss of control.

Some of the hospice workers went over for a while to help him. We did what we could, talking to his doctor, doing relaxation exercises with him, playing calming music, holding his hand. One nurse stayed until midnight, when he threw her out.

At 6 am our office got a call from his girlfriend. Fred had swallowed an entire bottle of morphine pills.

She wanted him out of there, she wanted him in a hospital, she no longer had the energy or the tolerance to care for him. Fred was whisked away in an ambulance, his guilt-ridden girlfriend in tears.

Fred didn't die that day. In fact, he remained in the hospital for three months, demanding that his girlfriend take him home, demanding higher and higher doses of pain medication. Gone were his New Age visions of a peaceful death. Gone were his openness and charm. Fred was angry. Fred was trapped. Fred was no longer in control.

It took those three months for his girlfriend to bring herself to tell him she had no intention of taking him home. Upon hearing the news, he did what the dying often do when they learn they won't be going home: he stopped fighting the inevitable. Within 24 hours, he was dead.

Why do I remember Fred? I remember his spirit change, I remember his anger, I remember him trying to stay in control. Always in control. And, in a way, he did stay in control--but not without alienating everyone around him. In spiritual pain, he could not find a belief that would bring him comfort, that would hold him in his sorrow and anger.

Fred is my reminder that death is not necessarily easy. And that we cannot know how we will behave until we are there, at that point.

Suzanne was something else. A gregarious woman, she had spent her working life as a saleswoman of one sort of product or another: appliances, electronic equipment, furniture. She could probably sell you anything, whether you wanted it or not. She called to arrange for hospice care at home a week after her diagnosis with aggressive breast cancer. She had decided against cancer treatment, and the doctor had given her six weeks to live.

She had had difficult relationships with various members of her family. She called all her children and grandchildren--quite a number of them--to reconcile and say her good-byes.

She accepted her disease, was curious about it, discussed it openly. Even as her condition worsened, she faced the consequences without fear. In due course, she became too weak to stay home and chose to go to a nursing home. She endeared herself to the staff there with her stories, played mother hen to her roommates, and generally held court, all from the confines of her bed.

Eight months into her illness, when I came to visit, she began asking, "Why don't I die?" She'd say, "I want to die. I want to see the angels and go to God. Why am I still alive?"

It was then that I learned that she'd been estranged from all six of her siblings for years because of an abusive upbringing that had left everyone embittered. They were summoned to her bedside over the next several weeks, and Suzanne talked to them and reconciled. Finally, all was healed.

The day Suzanne died, nearly a year after her diagnosis, the room was filled with her family, all brought together because of her illness.

I remember Suzanne for the courage with which she accepted her condition, chose to live in a nursing home, and spoke forthrightly with her children and grandchildren, and finally, her siblings. For her courage, with which she continued to love in the face of great physical and emotional pain.

Anna was elderly, a devout Catholic. I met her as she lay on her deathbed, surrounded by family in the room that had been hers for so many years, drifting in and out of consciousness, her body slightly restless and fidgety. Her children and grandchildren were restless, too. They paced about the house. She'd been near death for days, and they were exhausted and anxious to know when she might die. Her agitation and moaning scared them. I knew Anna was receiving the right amount of pain and anxiety medicine. I also knew from experience that she was very near death. It was early evening. I suggested they call her priest, Fr. John.

When Fr. John arrived, 20 minutes later, he took Anna's hand, and she opened her eyes. The three of us were alone in the room. "Let's say the rosary, Anna," he said. She nodded, and they held the beads together as he began the words. Anna stared at him and moved her lips along with the Hail Marys and Our Fathers. It was all she had the strength for. One by one, the family members came into the room. One by one, they began reciting the rosary with the priest, quietly, as if they didn't want anyone to hear. The only non-Catholic in the room, I watched and waited.

The rhythmic cadence of the prayer, now only a murmur, became all there was. Soothed by the familiar ritual, people relaxed, grew still. An aura of peace fell over the room. Anna's breathing slowed. She stopped moving her lips. She closed her eyes. With the final "amen," the priest and the family left the room. As they talked quietly in the kitchen, I watched Anna. Her face aglow and completely at peace, she took her last breath and died.

A devout woman, strong in her faith, Anna had opened her heart to her God and let go of this life. Having witnessed her utter serenity and the tranquility of her acceptance made hers the most powerful death I have seen. I remember Anna for her strong beliefs and the peace they brought to her.

I have been a student of death for years, and I know I will never learn all the lessons it has to teach. These few will stay with me forever. Mr. Smith gave me the will to improve the lot of others in his condition. Baby Jennifer gave me the ability to wonder. Charles gave me my definition of dignity. Thomas gave me an appreciation of being in the moment. Fred gave me the knowledge of how not to die. Suzanne gave me the meaning of courage. And Anna gave me a look at the power of grace.

May they rest in peace.

The Rev. Jane Dwinell is minister of the First Universalist Parish in Derby Line, VT, and chaplain of the Orleans-Northern Essex Visiting Nurses and Hospice.