When friends look at me anxiously, I’m quick to ask, “Don’t I look great?” This
is not a question about vanity. It’s a light reminder that although I have
incurable cancer, I look terrific. That is, I look like myself. A few years shy
of 60, I am neither frail, emaciated nor obviously ill. I enjoy my family, my
dogs, my friends, movies and Asian food. I am “highly functional” (in
doctor-speak); I work, cook and rake autumn leaves in my garden in New Jersey.
My life did not end when I got the diagnosis seven months ago, or when I stopped
medical treatment three months later.
I am not being cavalier about it;
the dire diagnosis sent me reeling. But there quickly comes a time to begin
making choices. Although you can change paths multiple times, you still must
make choices. Cancer patients – those whose disease can be eradicated or
controlled, or not – can’t indulge in the luxury of wasting time or the bliss of
ignorance.
That would mean ceding control and losing
opportunities.
Many people endure debilitating treatments because they
offer the hope for months or years of good health, if not a cure. I am not in
that group.
Seeing no rosy future, I chose to focus on the quality of my
life rather than the amount of time I might gain with treatment. For me, this
means registering for a hospice when the time comes. I am not yet “ripe” for
this end-of-life care, but when I am, a nurse and social worker, supervised by a
physician, will provide pain relief and counseling for me and my family, in our
home, to help us live as normally as possible for as long as
possible.
This seems to me to be a peaceful way to meet the Grim Reaper.
malach hamavet. The goal of a hospice is not curative but palliative – to ensure
the patient’s comfort and dignity, said my oncologist, Dr. Minaxi Jhawer in
Englewood, New Jersey. “A hospice doesn’t hasten death. It makes the end of life
more meaningful,” she said. “It equips you emotionally and spiritually. It
doesn’t make you suffer.”
I have been an advocate of quality of life for
the dying since my mother was in a hospice program 25 years ago, and I am greedy
for all the services a hospice can offer, for as long as it can offer
them.
But this long view is not the usual view.
AT A RECENT shiva
call, I listened as a mourner told the sad story of her sister’s deterioration.
“The hospice came in on Tuesday and she died Thursday.”
This is the
traditional narrow view: that a hospice is a type of care that eases the last
days of life.
A hospice can offer that comfort for the final days, but it
is much more. People with terminal illnesses – cancer, AIDS, Alzheimer’s – are
eligible for hospice care for the last six months of their lives. If you can
choose more comfort earlier, why wait? Many people apparently assume that a
hospice means death is imminent, and many do not use it for long, or at all.
There are many reasons: Some don’t want to know or acknowledge that the end is
near. Many are afraid or superstitious about speaking of death. Others think
that enrolling in a hospice means giving up on life, and that their doctors are
abandoning them.
Cancer is sometimes seen as a disease that doctors treat
and patients fight. Newspaper obituaries often report that someone died after a
“battle” with cancer. It almost sounds romantic, until you learn that the battle
may entail hospitalizations and toxic chemicals that often destroy the very
quality of the life they are supposed to prolong.
A hospice offers a
program of life, not a prescription for death. “If the patient felt a hospice
was the place to come and die, they would not be getting the benefit of it,”
said Dr. Charles Vialotti, medical director of Villa Marie Claire, the
residential hospice of Holy Name Hospital in Saddle River, New
Jersey.
“For too long, our classic definition of a hospice was that it
offers patients death with dignity. But it is offering life with dignity,” he
said. “Just because you have a life-altering illness which you’ve been told
can’t be cured doesn’t mean you can’t enjoy things important to you – love of
family, beauty of nature, the visual arts.”
Not only do hospice patients
have a better quality of life in their final months, but their families recover
more quickly, Vialotti said.
THERE IS no single way that people deal with
cancer, whether curable or not.
Some talk about it constantly, or write
blogs, columns and letters about their treatments, feelings, fears, prospects.
Others talk very little and are discriminating in what they say and to whom. I
am in the latter group. I want to live my life; I don’t want cancer to be my
life. I’m not much interested in talking about my cancer or hearing stories of
others’ ailments, and tend to dread even well-intentioned questions and
advice.
I choose to discuss it now because of the paradox that so many
people are squeamish talking about a hospice – an institution that puts me at
ease as I face a frightening future. I presume it is because they equate a
hospice with death, and respond with a forceful combination of fear, anxiety and
revulsion.
Last summer, Atul Gawande, a surgeon and professor at Harvard
Medical School, did much to dispel the fear of hospices when he wrote a powerful
essay in The New Yorker magazine: “Letting Go: What should medicine do when it
can’t save your life?” “Like many people, I had believed that hospice care
hastens death because patients forgo hospital treatments and are allowed
high-dose narcotics to combat pain. But studies suggest otherwise...,” he wrote.
“Curiously, hospice care seemed to extend survival for some patients.”
I
am a lucky woman. I feel good and I look great.
And although in grim
circumstances, I know I have choices. I will choose a hospice, because as the
Torah commands us in Deuteronomy (30:19), I choose life.