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ON BEING A PATIENT
Letter to a Patient’s Doctor
15 August 1998 | Volume 129 Issue 4 | Pages
333-334
As a journalist who
has written about the care of the dying(Life Support: Three Nurses
on the Front Line. Little, Brown;1997), I recently received a letter
from a reader, Mr. RichardJ. Arthur, whose wife had just died of
breast cancer. Aftersome discussion, Mr. Arthur sent me a copy of
the followingletter, which he had mailed to the physician who had
cared forhis wife.
Dear Doctor:
First of all, let me state that this letter is being writtenwith
love and respect, not as a complaint or anything remotelyclose to an
accusation . . .
Let me go at it this way.
When you met with Donna and me last March to review the resultsof
the latest bone scan, it was quite obvious that the radiation
treatments had failed and that there would be no further medical
treatment of the cancer in her spine. But you stood your distance
as you talked. And, in fact, you rather shortly dismissed us
from the consultation. You will be interested to know that as
we left your office, Donna’s comment to me was that it was harder
for you to talk about the test results than it was for us to
hear them.
Doctor, a lot of counseling would have been in order right then
and there. She, as a terminally ill patient, and I, as the caregiver,
needed to know how the disease would progress. We needed to
know what the symptoms would be. We needed you to paint a picture
for us, give us a sort of scenario about what we might expect
to happen. If it had been your decision not to speak of these
things in Donna’s presence, you could have asked me to come
back for the consultation.
I needed to know that as the pain continued to increase, there
were things that could be done. I needed to know that there
would be a gradual lessening of her ability to do things. When
she began to have difficulty even standing up and sitting in
bed, when she began dropping things, I should have been smart
enough to know that things were getting much, much worse. Dumb
me, I just figured it was part of the ongoing process and nothing
to be unduly concerned about.
I needed to know that the effect on her mental abilities would
begin to become apparent. Probably the most emotionally disturbing
thing that happened was the gradual change in her personality.
From a gentle, loving, caring woman, she began to change toa
hostile, accusatory, even embittered person. At first, I tookall
this very personally. It took some time before it finallydawned on
me that the disease was causing all of these things.I remember
somebody asking me how I was doing; I replied I wasdoing okay,
except for all the holes in my tongue from bitingit so often and so
hard.
Finally, Doctor, it would have been tremendously helpful toboth
Donna and me if you had told us about the hospice programon that
March visit. Perhaps you did not think that the timeleft would be
that short, but even so, you could have advisedme that the program
would be available when things got rough.
As it turned out, I finally gave up and phoned you one Friday.You
immediately had a hospice nurse come by that afternoon tosign us up.
She took charge at once, changing Donna’s medicationto morphine and
adding some other medications. On Sunday, anaide came and did much
to make Donna comfortable; another aidecame to bathe her and trim
her nails. The nurse herself cameby later, even though it was her
day off, just to see how thingswere going. And Sunday evening, Donna
died without really wakingup since the night before.
Had Donna been in the hospice program much earlier, I wouldhave
been able to secure a lot of assistance in taking careof her. It
became increasingly difficult to help her showerand shampoo, and I
had a devil of a time trimming her nailsand keeping her hair fixed
in the ponytail that she loved towear even at 71 years of age.
I am ashamed to admit how unaware I was of the progress of the
disease. I should have been smart enough to realize, as these
things began to take place, that the end of Donna’s life was
coming sooner than I had expected. I don’t know why I thought
it would be months away. Perhaps after 7 years of being her
caregiver, I just assumed it would go on that way indefinitely.
There were many things I could have done differently and better.
And there were many things that never got done because I just
didn’t understand the time constraints under which we were living.
Her children would have spent much more time with her had I
been able to advise them about the seriousness of her condition.
Because I did not realize it, I failed to alert them, and I
know they feel guilty about not having visited more often.
But enough of this discussion. The whole point, Doctor, is totry
to motivate you into handling your future terminally illpatients
somewhat differently. If you yourself don’t feel comfortablewith
doing the counseling, why not get the patient in the hospiceprogram
right away? Those people know how to do it, are experiencedin doing
it, and, as I could tell even from my short experiencewith them, do
it beautifully.
I can’t close this letter without once again thanking you forall
of the care you have given us, both Donna and myself, overthe years
we have been coming to see you. I don’t know how muchlonger I will
be your patient because this house is entirelytoo big and expensive
for a single person like me to hang ontoand I am already looking
around for a community to which tomove. Until then, however, I’ll be
bothering you for prescriptionrefills and, once in a while, for an
office visit.
I hope your vacation was a great one. I know it was past timefor
you to get away from all of us sick people for awhile.
Thanks ever so much for listening.
Richard J. Arthur
Sometime later, I called Mr. Arthur to ask if he had ever received
a response from his physician.
“Not a peep,” he replied.
Requests for Reprints: Suzanne Gordon, 11 Ely Road, Arlington,MA
02476-7121.
Ann Intern Med. 1998;129:333-334.
Coming to recognize you are wrong is like coming to recognize
you are sick. You feel bad long before you admit you have any
of the symptoms and certainly long before you are willing to
take your medicine.
Norman Maclean; Young Men and Fire; Chicago:
Univ of Chicago Pr; 1992
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