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Dying with Support, Dignity, Love
Dying With Support, Dignity, Love
Saturday, September 15, 2001
BY DALE G. LARSON
Editor's Note: This is the second in a 15 part series on how Americans are finding ways to embrace dignity and quality at the end of their lives.
It was a conversation Janet Fossett never expected or wanted to have: The doctor was alarmed. The cancer in her breast had reached an advanced stage. And it was spreading. She was 46, a wife and a mother. But with that doctor's office visit, the university professor from Delmar, N.Y., became one more member of an aging nation forced to wrestle in words with her own mortality.
As Janet was about to learn, even though these conversations can be grueling in their candor, advocates say they can also bring dignity to dying and a precious sense of control. But while Americans say they want quality at the end of life, they avoid the discussions that make dying well possible.
“I was very scared,” said Janet, recalling the day in April 2000 when she was diagnosed with stage III breast cancer. By the time her doctors detected it, the cancer had spread to her lymph nodes.
“I was scared of what test results would show, scared of having drugs injected into my veins, scared of major surgery, scared that I would soon die,” she said.
Perhaps most of all, Janet was scared of talking about it. She's not alone. Most Americans dread these conversations. Physicians avoid them. Patients are reluctant to ask the very questions that would help them plan for what lies ahead. Relatives try to “stay positive” or have no idea what to say.
Janet quickly found herself the center in this conspiracy of silence. “My fears made it hard to function,” she said. “I had to push myself to do what I knew I had to do: learn about my illness, find good doctors, undergo tests to determine how far the cancer had spread.”
Through conversation, Janet found a path through her fears: She understood her illness. Her doctors helped hammer out treatment options. As she later realized, Janet had taken the first steps on what she would call her “breast cancer journey.”
In physicians' offices, living rooms and community meetings across the country, people are learning how to break the silence. As America's burgeoning baby-boomer generation will soon find out, it's a three-step process:
When they're well, they can draw up so-called “advance directives,” a formalized game plan for end-of-life medical care, including a living will and a durable-power-of-attorney form.
When serious illness strikes, a double set of conversations can kick in:
one with health professionals to address not just the medical but the emotional and social needs of the patient. The other is with loved ones, whose support can make even the roughest end-of-life journey manageable.
Finally, when death draws near, conversation ascends to an almost spiritual state. By sharing the realities of dying, fear and denial can be replaced by intimacy and growth, a passage through the ultimate window of opportunity.
“Having direct talk, even about threatening issues like dying and death, can be reassuring,” said David Spiegel, director of Stanford's Psychosocial Treatment Laboratory. “It makes people feel connected, rather than isolated. So an intimate conversation about death can soften the terror.”
Studies back that up. One survey by physician William Tierney of Indiana University found that patients came away happier from doctor visits where advance directives were discussed. Further down the road, conversation becomes even more crucial. It is here that perhaps the most crucial discussion takes place-how to move from cure to care, from the so-called “curative” stage of treatment to the “palliative,” or comfort, stage where hospice help could eventually be considered.
The drive to get people talking, though, can be complicated by cultural considerations.
Each culture has its own set of rituals and taboos concerning death, and each varies in the extent to which its members can discuss death openly. But in the end, the decision always comes down to the individual.
And “it's your values that are most important in deciding if a treatment is right for you,” says Laura Esserman, director of the University of California San Francisco's Carole Frank Breast Cancer Clinic. She advises patients “to remember the treatments and services are for you, not the physician.”
Talking to her doctors, Janet said, was tough. But the conversation that followed was agony.
Janet and her husband, Jim, knew their son, Jeff, 9, would soon pick up on the frantic phone calls and skyrocketing anxiety in the house. How do you tell your own child that your life is in jeopardy?
For Janet, the answer began with a book. Janet and her husband met with a social worker in Boston who gave them How To Help Children Through a Parent's Serious Illness. As Jim drove, Janet read aloud on their way back to New York.
“We learned a lot on that two-hour drive,” said Janet. “We knew we couldn't delay the conversation any longer, that we needed to be truthful and use the `C' word.”
They got good advice: Keep it simple. Stress that cancer is not contagious. Assure Jeff that he had not, somehow, caused the illness. “Most of all,” said Janet, “we needed to assure him he would always be loved and cared for. By the time we got home, we had a plan.”
Jim and his son shot hoops in the driveway. Sitting on the front steps, Jim braced himself, then told his son what the doctors had found.
“You know how Mommy has been having lots of tests?” asked Jim.
“Well, it turns out Mommy has breast cancer.”
“Really?” said Jeff.
“Yes. But the doctors in Boston have good ideas about how to treat it. Mom and I can tell you more about it later.”
Jeff asked a few brief questions.
Then he changed the subject.
Later that evening, Janet drew Jeff a bath. She was on her knees with sleeves pushed up to the elbow. As Janet leaned over the tub, Jeff suddenly asked: “Mommy, are you going to die?”
Janet closed her eyes and took a deep breath.
“Actually,” she began, “I really don't know. I've got great doctors and they're going to help us figure out how to treat my cancer. I sure hope I don't die. And I want you to join me and Daddy in hoping for this, too.”
It was the talk she dreaded, “the most frightening conversation of my entire life,” she called it. And even then, it didn't include all the upsetting details-her treatment plan included chemotherapy, a mastectomy, radiation and hormonal therapy. But as dreadful as the conversation had seemed beforehand, it was over and done with in a heartbeat.
“I worried whether we'd fumbled these initial conversations,” she said later. “But we were sure that talking about this stuff with our son was better than not talking about it.”
But it was just the first of many conversations to come, conversations that continue today, 17 months after her cancer was diagnosed, as Janet struggles to live the fullest life possible in a lifetime still impossible to measure.
Said Janet: “If I should develop stage IV cancer, which is so often eventually fatal, then I guess we'll find ways to talk about that as well.”
There is no way around the reality of death and dying. But Americans are learning that end-of-life conversations can be a pathway leading them to a better way of dying. The end of life, say experts, need not be all angst and agony, but a time of personal growth.
Americans are clear in surveys about what they want as they die:
Maintain dignity. Be comfortable. Say good-bye to important people. Make peace with whatever higher power they choose. What they may not know, though, is that the healing power of these challenging conversations is one of life's greatest gifts. A few words-words perhaps never before uttered-can lift the burden of a lifetime of disappointment, of a shameful personal secret, of an unexpressed love.
In everyday words, it can sound as simple as this:
I forgive you.
Please forgive me.
I love you.
Janet Fossett is not ready to say goodbye to anyone. But if her cancer worsens, as it could well do, she already has learned the lexicon that will help her find a way to live with dying.
“I've recently begun writing a little bit about my life, things I'd like my son to know,” she said. “No matter what may happen to me, this will be a part of myself that I can always share with him.”
In her education, Janet has had some powerful teachers-from authors to Web masters, social workers to medical specialists, and most of all, family and friends. Her time facing death has enriched her life in many ways.
“No one knows what the future holds,” said Janet. “But this uncertainty is also a gift that allows us to be hopeful for my future.”
As she moves into it, she takes with her the greatest lesson of all.
“I learned,” said Janet, “that I did not have to face these conversations alone.”
Dale Larson is an associate professor in the Department of Counseling Psychology at Santa Clara University in California.