Berk: Development Throught the Lifespan

SOFIE'S LAST YEAR

In January of 1969, Sofie looked back on the previous year with satisfaction. Despite intensive regimens of radiation treatment and chemotherapy, which sapped her strength, she had managed to teach high school full time, conduct evening classes in English for the foreign born, and take a long-awaited vacation with Philip.

Most important, Sofie's family seemed settled. Her younger daughter Laura's wedding to Ken had taken place the previous summer. Eagerly anticipating the event, Sofie had planned and orchestrated all the details while Laura remained at the University of Chicago to take her doctoral exams. Sofie's oldest child, Suzanne, had been married for several years; a grandchild was expected the following June. And Martin, Sofie's youngest, had completed his first semester of law school. "I'll continue to fight," Sofie thought to herself. "But if I have to go soon, at least I know the children are well and happy."

Sofie had Hodgkin's disease, a form of cancer named for Thomas Hodgkin, a nineteenth-century English physician. Typically, the disease surfaces as a painless, hard lump in the lymph nodes under the arm and, as it spreads, leads to persistent fevers, chills, fatigue, and weight loss. Its cause remains unknown. Today, when Hodgkin's disease is detected early, as many as 90 percent of cases can be completely cured. In Sofie's day, however, it was almost always fatal.

Even with aggressive treatment, Sofie's illness asserted itself—ever more insistently with each passing day. Most evenings, she went to bed with a fever. To bring her temperature under control, she took aspirin repeatedly until an upset stomach and gastrointestinal bleeding led her doctor to diagnose "aspirin poisoning," and she had to stop. As a result, Sofie's weakened, flushed appearance became a fact of life. She caught repeated illnesses—colds, bronchitis, and the flu. Her letters to Laura revealed growing awareness that her days were numbered, that soon her teaching duties would become too strenuous, and that she would have to give them up. At times, her optimism faltered:

June 9, 1969: . . . Yesterday I had a long visit with Dr. H. He told me that the remission is not complete. All I can gather from his talk is that I must learn to live with sickness due to the progression of the disease. I had no illusion that this time would come, just hoped that I would have a few more perfect years. To make plans under the circumstances is very hard. My premonition that I might not be able to teach next year is becoming more of a reality. There are many things that depress me, among them that your Dad might have to live for a long time with an ailing wife . . . .

Then her determination to fight would resurface, along with her sense of humor and exhilaration for life:

June 10, 1969: I am now concerned that I might have alarmed you too much yesterday. Sure, there's the worry about finding a drug that can help me for any length of time. We have gone through about four and none worked; if they did, it was just for a couple of weeks. For the first time at my last visit, Dr. H pointed out to me that what I have is a terminal disease (as if I didn't know). While he had often mentioned that he could string me along for so many years that I might die of something entirely different, this doesn't seem to be his theme now.
I eat like crazy to keep my weight up—two pieces of lemon pie today for lunch. So to put it bluntly: no matter what happens, I should outlast the summer.
Tonight, for the first time in a month, I'm going out with your father to hear the pianist Casadesus. I just hope I don't cough my way through the performance and disturb everyone around me. In my incorrigible optimism I'm even daring to plan to visit you in Chicago next month. With such a disease, who can live without optimism?

By July, Sofie's fever was more intense, and she had longer periods of feeling "weak, foggy, and downcast." She wasn't strong enough to make the visit to Chicago.

Stricken before the hospice movement, Sofie found much in her medical treatment that was insensitive. Although she wanted to participate in decisions about her own treatment, she found it hard to get information from her doctor about the benefits and risks of the various drugs. Dr. H paid no attention to her emotions—and often overlooked her physical comfort as well:

September 2, 1969: Maybe I shouldn't write you about this, because what's the use. The more I see of Dr. H, the less I feel I can go on with him. I forced an open discussion last Friday. I told him what I thought—that for him, I am just a bundle of Hodgkin's disease cells, not a human being. With all the side effects of the current treatment, he could care less about whether I am comfortable. The current drug causes fainting and unbearable abdominal spasms. I suggested that when the side effects become so severe, perhaps it's time to consider switching to another drug. This provoked a tirade. He instructed me not to tell him how to treat the disease. Then he said, "Well, Mrs. E., you must learn to live with pain and discomfort. I don't think you will be able to walk more than another 6 months."

It was less than 6 months. By mid-October, Sofie was hospitalized. The disease had invaded many of her organs, and she began to wither. A week later, she telephoned Laura and Ken from the hospital, bursting into tears: "I'm sick, so very sick! I'm trying so hard, but I can't keep on."

Gathering her limited energies, Sofie pulled herself together once more, returning home for an 8-day period, during which Suzanne and her 4-month-old daughter Ellen, Sofie's first grandchild, visited. Sofie's relationship with Suzanne had been strained for many years; that brief week was a time of reconciliation. On November 11, after returning to the hospital, Sofie wrote to Laura, "Being a mother has released a very warm personality in Suzanne, wiping out so much of [the anger and bitterness] that remained between us."

By early December, the disease had invaded Sofie's lungs, and she had trouble breathing. Treatment turned from beating back the cancer to relieving Sofie's panic attacks due to shortness of breath. Sofie's children gathered, spending the holidays at her bedside with Philip. For a family so full of youth and new beginnings—recent marriages, graduations, and a new birth—assimilating the reality of Sofie's impending death was traumatic. No specialists in dying were available at the hospital to help, so Sofie and Philip led the way.

"It's going to happen soon," Sofie said calmly. "I'm too weak, too full of fever to fight the disease and the doctor any longer." Because Sofie and Philip knew how and when her death would probably take place, they chose a time when the family could express what their lives had meant to one another. Among those precious, bedside exchanges was Sofie's memorable, last wish that Philip remarry after her death so he would not live out his years alone. Openness about impending death granted Sofie a final generative act, helped her let go of those closest to her, and offered comfort as she faced death.

Just after the New Year, Sofie's children, at her urging, returned to their homes and worklives. Philip and Sofie spent the next weekend by themselves—in a hospital room with a view of the San Francisco Bay Area foothills, where they had raised their family. Although no one ever learned exactly what passed between them during those final days, it was clear that Philip and Sofie brought to conclusion a twenty-seven year marriage that had sustained, through joyful and difficult times, the mutual respect and caring that are prime ingredients of love.

On January 5, 1970, Sofie lapsed into a coma. On January 7, at 3 pm, she died.

Extending the Websketch

Chapter 19

List the emotions, both stated and inferred, that Sofie experienced during her last year. Are Sofie's reactions consist with Kubler-Ross's theory, described on pages 635-636 of your text? Why or why not?
Dying patients' thoughts and feelings are affected by a variety of contexts. Explain how Sofie's personality, illness and symptoms, family members' and health professional's behaviors, and culture affected her adaptation to death and dying.
How does Sofie's last year fit the definition of appropriate death?
Compare Sofie's approach to death with that of Chuck Snook, described in the news articles on this website. How are their experiences and reactions similar, and how are they different? What might explain these commonalities and differences?
© Laura E. Berk. Printed by permission.