(Note: Some names in this story have been changed.)
Mickey has seen his share of death and dying. In a span of four
years, he watched his father and two close friends, Marsha and
Richard, succumb to illness. A resident of Massachusetts, he says
the experience of helping family and friends die has forced him
to think more about the inevitability of his own death and heightened
his desire to die with as much dignity as possible. Mickey says
it has taught him that "as a culture we have not really done a
good job of dealing with the issue of death."
His Father's Ordeal
Mickey's father was 75 when he had a coronary and died. In the
preceding months, as his father's heart condition worsened, it
became clear to Mickey that it was difficult for doctors to deliver
bad news. "I don't think they did it out of any incompetence.
But it is very hard for them to have to say, 'You've got a one-in-a-hundred
chance of surviving.'"
Mickey says his father initially "was ready to face his own death"
but his physicians kept pushing medical interventions to keep
him alive, while downplaying the risk of those procedures. As
a result, Mickey says, his father suffered a lot of pain to prolong
his life for a relatively short period. "Their mandate is to deny
death. While it is admirable, I think it does everyone a disservice.
It puts physicians in an untenable position. They are constantly
trying to present a scenario that is going to lead to life."
"We've got to incorporate the notion of failure into the conversation,"
Mickey says. "I think that would help doctors a lot and it would
help patients and their families . . . As people become more willing
to deal with issues of death and dying, then they can start dealing
with decisions they have to face and questions of pain management
and how to die."
Marsha: A Conspiracy of Denial
Marsha's unrelenting quest for miracle cures and distrust of traditional
medicine got in the way of her facing the prospect of death. Marsha
died of metastasized breast cancer. But as a mother with two young
children, she resisted coming to terms with her illness until
the very end of her life. Instead, Marsha zealously pursued questionable
"alternative" therapies for her disease, hoping they would be
Marsha's motivation was linked to the first encounter she had
as a breast cancer patient. "It set up a sense of distrust," says
Mickey. Marsha dealt with doctors who were unsympathetic to her
disease and to her difficulty with having a mastectomy. "People
are most vulnerable when they discover how ill they are . . .
It took her weeks to recover" from that experience, he says. She
eventually found a breast cancer clinic and had better relationships
with her physicians. But when her cancer spread and it became
evident that traditional treatment was no longer working, Marsha
refused to accept her fate. "There was a conspiracy of denial.
She was looking for a cure and a lot of New Age practitioners
were invested in her being able to find some way out of her dilemma,"
Mickey and a physician friend were the ones to make her accept
that she was dying and needed to say goodbye to her family and
her friends. Marsha, exhausted at that point and in great physical
pain, finally relented; when she died she was at home, surrounded
by her friends and family.
Richard: Letting Go
Mickey's friend Richard also was consumed with finding a miracle
cure for his terminal brain cancer. But he was more willing to
face his situation. Like Marsha, Richard sought often futile alternative
treatments. But unlike Marsha, he was willing to talk about his
disease and express his fears about dying.
"Richard was most afraid of not having the people he loved around
him," says Mickey. "He was most afraid of being alone." Richard's
candor about his disease stemmed from watching Marsha suffer.
He was "horrified by how painful her death was and how her denial
sort of deprived her of a certain kind of resolution," says Mickey.
Mickey says Marsha's experience made Richard determined to talk
about his situation. "He talked about everything... how he was
feeling, what the disease did to him, how debilitating it was,
and how sad it was to be dying." Richard had been an extraordinary
athlete and his physique was important to him. He brooded about
how difficult it was to lose control of his body and his independence.
Richard died the way he wanted because he took control. At 50,
after nearly two years of suffering from brain cancer, Richard
decided that he no longer wanted to live with such pain and used
morphine he had acquired to help him die at home. Mickey, along
with another of Richard's friends, helped him die. "He said goodbye
with extraordinary dignity," says Mickey. He will always admire
the grace Richard exhibited not only in struggling with his cancer
"but in letting go."
A Great Gift
One of Mickey's happiest memories from right before Richard's death
is having the opportunity to feed him ice cream, a pleasure Richard
had denied himself for years. "He was obsessive about his diet.
The last week I fed Richard hot dogs and we talked about being
kids going to baseball games and I gave him the richest ice cream
and he loved it." Sharing Richard's death, says Mickey, "was a
Mickey says these three experiences have forced him to consider
how he would deal with a terminal disease. "I am determined not
to spend my time looking for a cure . . . I watched my friends
get caught up in fighting their disease. I want to spend the last
days of my life doing what makes me happy."