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, 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
“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
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
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
“Having direct talk, even
about threatening issues like dying and death, can be reassuring,”
said Dr. 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 Dr. 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 Dr. 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’s 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
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
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 webmasters,
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.”
© 2001, Partnership for Caring,
Distributed by Knight Ridder/Tribune