Suzanne
\nGordon, BA <\/span><\/a><\/p>\n<\/span><\/p>\n
15 August 1998 | Volume 129 Issue 4 | Pages
\n333-334<\/strong><\/span>
\n<\/span><\/p>\n <\/p>\n
\nAs a journalist who
\nhas written about the care of the dying(Life Support: Three Nurses
\non the Front Line. Little, Brown;1997), I recently received a letter
\nfrom a reader, Mr. RichardJ. Arthur, whose wife had just died of
\nbreast cancer. Aftersome discussion, Mr. Arthur sent me a copy of
\nthe followingletter, which he had mailed to the physician who had
\ncared forhis wife.
\n<\/span><\/span><\/p>\nDear Doctor:
\n<\/span><\/span><\/p>\nFirst of all, let me state that this letter is being writtenwith
\nlove and respect, not as a complaint or anything remotelyclose to an
\naccusation . . .
\n<\/span><\/span><\/p>\nLet me go at it this way.
\n<\/span><\/span><\/p>\nWhen you met with Donna and me last March to review the resultsof
\nthe latest bone scan, it was quite obvious that the radiation
\n<\/sup>treatments had failed and that there would be no further medical
\n<\/sup>treatment of the cancer in her spine. But you stood your distance
\n<\/sup>as you talked. And, in fact, you rather shortly dismissed us
\n<\/sup>from the consultation. You will be interested to know that as
\n<\/sup>we left your office, Donna’s comment to me was that it was harder
\n<\/sup>for you to talk about the test results than it was for us to
\n<\/sup>hear them.
\n<\/span><\/span><\/p>\nDoctor, a lot of counseling would have been in order right then
\n<\/sup>and there. She, as a terminally ill patient, and I, as the caregiver,
\n<\/sup>needed to know how the disease would progress. We needed to
\n<\/sup>know what the symptoms would be. We needed you to paint a picture
\n<\/sup>for us, give us a sort of scenario about what we might expect
\n<\/sup>to happen. If it had been your decision not to speak of these
\n<\/sup>things in Donna’s presence, you could have asked me to come
\n<\/sup>back for the consultation.
\n<\/span><\/span><\/p>\nI needed to know that as the pain continued to increase, there
\n<\/sup>were things that could be done. I needed to know that there
\n<\/sup>would be a gradual lessening of her ability to do things. When
\n<\/sup>she began to have difficulty even standing up and sitting in
\n<\/sup>bed, when she began dropping things, I should have been smart
\n<\/sup>enough to know that things were getting much, much worse. Dumb
\n<\/sup>me, I just figured it was part of the ongoing process and nothing
\n<\/sup>to be unduly concerned about.
\n<\/span><\/span><\/p>\nI needed to know that the effect on her mental abilities would
\n<\/sup>begin to become apparent. Probably the most emotionally disturbing
\n<\/sup>thing that happened was the gradual change in her personality.
\n<\/sup>From a gentle, loving, caring woman, she began to change toa
\nhostile, accusatory, even embittered person. At first, I tookall
\nthis very personally. It took some time before it finallydawned on
\nme that the disease was causing all of these things.I remember
\nsomebody asking me how I was doing; I replied I wasdoing okay,
\nexcept for all the holes in my tongue from bitingit so often and so
\nhard.
\n<\/span><\/span><\/p>\nFinally, Doctor, it would have been tremendously helpful toboth
\nDonna and me if you had told us about the hospice programon that
\nMarch visit. Perhaps you did not think that the timeleft would be
\nthat short, but even so, you could have advisedme that the program
\nwould be available when things got rough.
\n<\/span><\/span><\/p>\nAs it turned out, I finally gave up and phoned you one Friday.You
\nimmediately had a hospice nurse come by that afternoon tosign us up.
\nShe took charge at once, changing Donna’s medicationto morphine and
\nadding some other medications. On Sunday, anaide came and did much
\nto make Donna comfortable; another aidecame to bathe her and trim
\nher nails. The nurse herself cameby later, even though it was her
\nday off, just to see how thingswere going. And Sunday evening, Donna
\ndied without really wakingup since the night before.
\n<\/span><\/span><\/p>\nHad Donna been in the hospice program much earlier, I wouldhave
\nbeen able to secure a lot of assistance in taking careof her. It
\nbecame increasingly difficult to help her showerand shampoo, and I
\nhad a devil of a time trimming her nailsand keeping her hair fixed
\nin the ponytail that she loved towear even at 71 years of age.
\n<\/sup>
\n<\/span><\/span><\/p>\nI am ashamed to admit how unaware I was of the progress of the
\n<\/sup>disease. I should have been smart enough to realize, as these
\n<\/sup>things began to take place, that the end of Donna’s life was
\n<\/sup>coming sooner than I had expected. I don’t know why I thought
\n<\/sup>it would be months away. Perhaps after 7 years of being her
\n<\/sup>caregiver, I just assumed it would go on that way indefinitely.
\n<\/sup>
\n<\/span><\/span><\/p>\nThere were many things I could have done differently and better.
\n<\/sup>And there were many things that never got done because I just
\n<\/sup>didn’t understand the time constraints under which we were living.
\n<\/sup>Her children would have spent much more time with her had I
\n<\/sup>been able to advise them about the seriousness of her condition.
\n<\/sup>Because I did not realize it, I failed to alert them, and I
\n<\/sup>know they feel guilty about not having visited more often.
\n<\/span><\/span><\/p>\nBut enough of this discussion. The whole point, Doctor, is totry
\nto motivate you into handling your future terminally illpatients
\nsomewhat differently. If you yourself don’t feel comfortablewith
\ndoing the counseling, why not get the patient in the hospiceprogram
\nright away? Those people know how to do it, are experiencedin doing
\nit, and, as I could tell even from my short experiencewith them, do
\nit beautifully.
\n<\/span><\/span><\/p>\nI can’t close this letter without once again thanking you forall
\nof the care you have given us, both Donna and myself, overthe years
\nwe have been coming to see you. I don’t know how muchlonger I will
\nbe your patient because this house is entirelytoo big and expensive
\nfor a single person like me to hang ontoand I am already looking
\naround for a community to which tomove. Until then, however, I’ll be
\nbothering you for prescriptionrefills and, once in a while, for an
\noffice visit.
\n<\/span><\/span><\/p>\nI hope your vacation was a great one. I know it was past timefor
\nyou to get away from all of us sick people for awhile.
\n<\/span><\/span><\/p>\nThanks ever so much for listening.
\n<\/span><\/span><\/p>\nRichard J. Arthur
\n<\/span><\/span><\/p>\nSometime later, I called Mr. Arthur to ask if he had ever received
\n<\/sup>a response from his physician.
\n<\/span><\/span><\/p>\n“Not a peep,” he replied.
\n<\/span><\/span><\/p>\nRequests for Reprints: Suzanne Gordon, 11 Ely Road, Arlington,MA
\n02476-7121.
\n<\/span><\/span><\/p>\nAnn Intern Med. 1998;129:333-334.
\n<\/span><\/span><\/p>\n
\n<\/span><\/p>\nComing to recognize you are wrong is like coming to recognize
\n<\/sup>you are sick. You feel bad long before you admit you have any
\n<\/sup>of the symptoms and certainly long before you are willing to
\n<\/sup>take your medicine.
\n<\/span><\/p><\/blockquote>\nNorman Maclean; Young Men and Fire<\/em>; Chicago:
\n<\/sup>Univ of Chicago Pr; 1992
\n<\/span><\/p><\/blockquote>\n
\n<\/span><\/p>\n<\/a><\/span><\/p>\n\n\n\nAuthor and Article
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