When Death Is Inevitable
August 10, 2004
By JANE E. BRODY , New York Times

Submitted by Fran F., via the internet

A letter to a physician may not seem like a "personal
health" matter unless the problem it addresses - whether
doctors abandon patients who are dying - concerns you or
someone you love.
The letter that appears below was written by the husband of
a woman whose oncologist had cared for her for nearly seven
years, and then abandoned her, her husband writes, in the
final weeks of her life. A copy of the letter was sent to
Dr. Diane Meier, director of palliative care at Mount Sinai
Medical Center.
Dr. Meier told me, "I have seen this happen hundreds of
times, causing profound hurt and injury to the patient and
family that compounds the losses a thousandfold."
The oncologist had been the patient's lifeline for years,
and the doctor's behavior distracted the patient "from the
important family and existential work she should have been
attending to while she was dying," Dr. Meier said.
"Patients wonder what they did to offend their doctor, why
they are no longer worthy of attention," she continued.
"And, of course, patients do not realize that since they
'failed' therapy, the doctors feel they 'failed' the
patient. When patients are so sick, the doctor-patient
relationship is deeply personal and vulnerable and unequal.
Doctors need to know the cost of this behavior for their
patients, whose interests they are sworn to put first."
So, like Dr. Meier and the bereaved husband who wrote this
eloquent letter, I am hoping that physicians whose patients
no longer respond to active therapy will read this column.
The husband chose to bring his wife's experience to public
attention in the hope that other dying patients will be
spared similar anguish. I have deleted the doctor's name,
the name of the patient and the hospital where she was
treated because the point is to highlight not the specifics
of this case, but the broader point about a behavior that,
as Dr. Meier points out, is all too common.
The doctor works at a major New York cancer center.
'A
Grave Breach'
"Dear Doctor: I'm writing to you in reference to my wife,
who died on May 29, 2004. I wish to make clear from the
outset that I am not impugning your medical competence but
am seeking to bring to your attention what, in my opinion,
constitutes a grave breach of the moral contract you
entered into with her.
"As you know, my wife was diagnosed with lung cancer in
1997 and was treated successfully by you for almost seven
years. During that time, she developed a relationship of
confidence with you which, given her many unhappy past
experiences with doctors, was both encouraging and
surprising.
"And yet, at the end, to her (and my) profound
disappointment, you failed her. When you realized that you
could do no more to reverse her progressive disease and
that death had become inevitable, you abandoned her. You
evaded her telephone calls; you waited 10 days before
informing her of the April 2004 CAT scan results; you
pulled away. The empathy you had displayed was replaced by
what she experienced as indifference. And, sadly, your
behavior dovetailed perfectly with the New York Times
article "Facing Up to the Inevitable, in Search of a Good
Death" of Dec. 30, 2003, which speaks of physicians who
withdraw from patients rather than address feeling 'guilty,
insecure, frustrated and inadequate.'
"It is true that you informed my wife, offhandedly, that
the hospice staff would care for her during the final
phase. As they did - with dedication and great dignity.
However, your coldness during her final weeks made it more
difficult for us because she felt that she had lost the
medical anchor you had provided and no longer had a doctor
she could trust to explain what was happening to her as her
body withered and her vulnerability grew.
"Much precious time was wasted trying to turn her mind from
your dismissal of her that she experienced as a
professional and personal betrayal. Which I believe it was."Would it have cost you so much, doctor, to have picked up
the telephone to speak with her after almost seven years of
treatment? Would it have been so intolerable to you to have
looked into her eyes - at the hospice perhaps - and told
her that you wished her well and wanted a chance to say
goodbye? Were you truly unable to offer even a shred of
comfort, a word of condolence to her family? Had she really
become no more than another statistic, a failure you
preferred to brush aside?
"I am asking you to help ensure that oncologists like
yourself, who work with many patients they are bound to
lose, not abandon them emotionally, as you did. I am asking
that you suggest that your hospital consider setting up a
training program for doctors like yourself so that other
patients can be spared the pain of the rejection my wife
experienced. Because it is my conviction that doctors
treating terminally ill patients have a moral obligation to
stand with them from start to finish even when, at the end,
those patients must be transferred to hospice care. It is
not easy for me to tell you that from this perspective, I
believe that your failure was monumental.
"Perhaps this letter will help you display greater feeling
with future patients and not ask them, as you did my wife
from a distant height, 'What would you like us to do for
you?' What she wanted you to do was simple: she wanted you
to speak to her with courage; she wanted you to show a bit
of concern, which would have meant as much to her then as
all the chemotherapy you prescribed when there was still
hope; she wanted you to help her die more peacefully - as
you had promised that you would but did not. It would have
made the work of the hospice staff easier. It would have
been a consolation to her and to the family and friends who
loved her."
What the Patient Can Do
Dr. Dan Shapiro, a clinical psychologist at the University
of Arizona, is one of a growing number of experts who teach
medical students and physicians the importance of healing
patients even when they cannot cure them. He pointed out
that "when patients are referred to hospice care, some
doctors think that it's their cue to bow out." At that
point, he suggests that patients make it clear to their
physicians that they want them to stay involved.
Dr. Shapiro advises patients to tell their doctors: "I
don't expect miracles from you. I appreciate everything
you've done up to now. I and my family would be grateful,
even though I may be dying, for your continued help with my
quality of life and dignity." Patients might then add a
specific request, he said, like asking for help on how to
remain clear-headed while still getting appropriate pain
relief.
Such a statement expresses gratitude and takes the
physician off the hook by saying that the patient does not
expect miracles but would like help in achieving a peaceful
end, Dr. Shapiro said.
"This makes the physician feel useful and less likely to
retreat," he added.
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