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JOURNAL OF PALLIATIVE MEDICINE

Volume 16, Number 10, 2013


ª Mary Ann Liebert, Inc.
DOI: 10.1089/jpm.2013.0060

Paradox of Hope

Justine V. Cohen, DO

E dith Shostovinich* was an 86-year-old pianist. As a


young woman she played in the finest concert halls in the
world, her name renowned for her soaring solos. As she aged,
whom recognized that their patient was a legend in the world
of classical music. I admitted her to the special care unit where
she was to receive two units of packed red blood cells and
Mrs. Shostovinich grew ill and travel became difficult. She three six-packs of platelets along with broad-spectrum anti-
settled into the life of a teacher at a conservatory: giving pri- biotics and other supportive measures.
vate lessons, holding master classes, and welcoming students I began to look forward to my daily visits with Mrs.
and faculty to her traditional tea parties. Shostovinich. After I’d sign out I would turn off my pager and
At the same time Mrs. Shostovinich was coping with steal away to her room to hear her recount memories of her
myelodysplastic syndrome (MDS), receiving routine blood storied career, dazzling audiences across the globe. As our
transfusions. She’d been diagnosed with MDS 15 years earlier bond grew I asked her about advance directives. ‘‘I have a
and had failed two chemotherapeutic regimens with lenali- living will,’’ she told me. ‘‘It says that I want everything done.
domide and decitabine, leaving her dependent upon trans- And that’s what I’m sticking to so please do everything.’’ There
fusions of blood and/or platelets on a nearly weekly basis. was no hesitation or faltering in her voice. No fear: only pure
Regular testing and a battery of doctor’s appointments had stoicism. I documented her wishes in the chart and did as she
become a part of her life. At baseline, Mrs. Shostovinich lived asked. As I left her room each day we developed our own little
at a hemoglobin of 6 g/dL and a platelet count of 15 · 109/L. routine. I would squeeze her hand and wait for her to squeeze
I met Mrs. Shostovinich on a bitterly cold December back in return. Then, at the door I’d look back over my
morning when she developed a fever during one of her many shoulder at her—with her tight bun and stylish sunglasses
transfusions. From the day-stay unit she was sent directly to that she wore even though she had not been outside in days—
the emergency room (ER), where it was noted she had a he- and she would blow me a kiss.
moglobin of 5.6 g/L, WBC 25,000 · 109/L, and a platelet count But Mrs. Shostovinich’s counts continued to drop despite
of 4 · 109/L. I was an intern at the time and I was called to daily transfusions. Our threshold to transfuse became lower
admit the patient. The ER doctor who passed me her case was and lower. Her infection had seeded from a sore, deep in her
vague: ‘‘This is an old lady with MDS and fever, source un- left nostril, which subsequently spread rapidly through her
clear. She needs admission and transfusions.lots of ‘em.’’ sinuses and into her eyes. Her face became diffusely ery-
I drew back the curtain in the ER and saw a short, plump thematous and edematous with green purulent exudate con-
lady with her gray hair tightly pulled back into an elegant tinuously oozing from the medial epicanthi. This irritated her
bun, wearing sunglasses. ‘‘Do I know you?’’ she asked me. I because it hindered her vision and kept her from seeing what
racked my brain—worried that I had treated her before but was happening around her. Every so often I would delicately
didn’t remember. ‘‘I don’t think so, Mrs. Shostovinich.’’ broach the subject of code status, explaining to her the gravity
‘‘It’s ShostVEENich,’’ she corrected me, sharply but of her condition and offering alternatives to aggressive re-
endearingly—with an instructing voice that her piano stu- suscitation that she might not survive. She always refused to
dents surely knew by heart. ‘‘And I’m certain I know you, but have the conversation, stating emphatically that she did not
how, dear?’’ Before I went to medical school I’d had a career as want to be a Do Not Resuscitate (DNR) status, but rather a Do
an oboist. I immediately recognized her name when she Everything status. ‘‘I know you want me to know that I’m
pronounced it correctly and was mortified at my ignorance. ‘‘I dying,’’ she scoffed at me once. ‘‘But I’m not ready.’’ I ex-
don’t believe you could know me but I certainly know you. plained to her my rationale of not wanting her to suffer. Pal-
Everyone knows you: you play the most beautiful Chopin liative care, I told her, is focused on providing comfort and
nocturnes in the world,’’ I said, amazed to find her here in relief and could complement her treatment of MDS and pro-
my ER. long living for her, rather than prolong dying. ‘‘I don’t want
We talked about music: my oboe and her piano. She was it,’’ she would say. ‘‘I want the Do Everything option.’’ She still
still convinced that she knew me, which I was sure had to be blew me a little kiss on my way out, but I worried that she
impossible given her fame. I did a thorough history and would resent me for bringing up such a sensitive subject.
physical, placed orders, and discussed her treatment plan Soon Mrs. Shostovinich developed bacteremia, likely
with both my resident and her hematologist—neither of seeding from her nose. We broadened her antibiotic coverage,

Department of Internal Medicine, Pennsylvania Hospital, University of Pennsylvania, Philadelphia, Pennsylvania.


*Name has been changed.

1307
1308 PERSONAL REFLECTION

fearing orbital cellulitis and impending septic shock. Each day arrived. ‘‘I’ve been thinking about it and I want to change my
she grew weaker and each night I was more anxious about code status.’’ Hospice at last, I thought. She then belted out with
leaving her in my colleagues’ care, knowing that she could as much force as her now-frail body could muster: ‘‘I want to
rapidly deteriorate and require a barbaric code. go back to the Do Everything status. Please reverse my DNR
Finally one day she agreed to a DNR order, with continued order; you have given me hope and now I want to live.’’
treatment of her disease but no cardiopulmonary resuscita-
* * *
tion, defibrillation, or intubation. I gave her my traditional
Mrs. Shostovinich passed away peacefully five days after
ever-so-slightly prolonged hand squeeze that night and as-
that. She was a full code for two days before she finally suc-
sured her softly that I would add the appropriate documen-
cumbed to her doctors’ and family’s wishes for comfort. In
tation to her chart and relay her new code status to the
caring for her so deeply and devoting so much of myself to
covering night house staff. She barely squeezed back, but to
her, I had paradoxically given her hope that she would live to
my relief, blew me a kiss at the door.
walk out of the hospital and go back to her life as a piano
I left the hospital that night feeling unburdened. This was
teacher. It was a paradox that medical school had not pre-
the right decision for this patient who had become such a large
pared me for. Perhaps I was Mrs. Shostovinich’s final student:
part of my life. I never wanted to pressure her or let her feel
she made me question whether success in medicine is defined
that we were giving up on her. Having established a rela-
by the lives you save or the quality of life you preserve.
tionship, she trusted me. It was the first time in my life that I
felt a sense of ultimate responsibility. I slept well, knowing I
had done something to help this woman at the end of her life. Address correspondence to:
Desaturation and shortness of breath lead to a CT thorax Justine V. Cohen, DO
revealing septic emboli to her lungs. I read about MDS, noting Hematology and Medical Oncology
that most patients die of an infection, and prepared myself for
Yale Cancer Center
the inevitable, comforted that she might die peacefully with- 333 Cedar Street
out aggressive efforts. I continued to visit her and talk to her PO Box 208028
family about music, teaching, and the piano. She had become New Haven, CT 06520
too weak to say much.
One day I received a page. Mrs. Shostovinich wanted to see
me immediately. ‘‘There you are,’’ she said quietly when I E-mail: Justine.cohen@yale.edu

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