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ON BEING A PATIENT
A Letter from a Patient’s Daughter
15 July 1996 | Volume 125 Issue 2 | Pages
149-151
My mother, Georgia
Hansot, died recently in the intensive careunit of a major hospital
in the eastern United States. She was87 years old. This is an
account of the 5 days she spent inthe hospital from the point of
view of her daughter, a 57-year-oldprofessional woman who was
charged with her mother’s power ofattorney for health care. My
intent is to convey the experienceof one person thrust into the
unfamiliar world of hospital routinesand intensive care units. My
mother’s experience died with her;I can describe only what I
experienced and what I understoodher to be trying to
communicate.
This essay could as easily be entitled “There Are No Villains
Here.” Medical personnel, trained to save lives and not to let
patients die, exerted themselves to that end. Hospital staff
and the families of other patients in the intensive care unit,
as time and ability allowed, tried to comfort. Nonetheless,
those 5 days were among the loneliest and most disorienting
that I have ever experienced.
As I think back on it, I am astounded that I had so little inkling
of how hard it would be to help my mother have the death she
wanted. A widow of 6 years, my mother had retained the no-nonsense
attitude of her Kansan farming origins. She lived in an affluent
and stable community on the east coast, and she saw her physician
of 25 years routinely for checkups. When we talked together
about how she wanted to die, she was clear, consistent, and
matter-of-fact. She hoped for a swift death and wanted no unnecessary
prolongation of her life.
Entrusted with a general power of attorney and a power of attorney
for health care, I believed that I could make decisions on her
behalf as she would want them made if she were to become
incapacitated.As it turned out, I was woefully unprepared for what
was instore for her and for me.
On a spring morning in April, my mother abruptly became illand
was promptly admitted to the local hospital. When I arrivedin the
late afternoon, she was resting comfortably after a longday of
diagnostic tests. Because she had been tired by the day’sordeal, I
stayed only briefly, promising to be back early inthe morning with
newspapers and books. I left my number withthe nurse, in case of an
emergency.
At 2:00 the next morning, I was awakened by a call from thenight
nurse. My mother had suddenly taken a turn for the worseand was
being transferred to intensive care. I arrived on thehospital floor
just as the gurney was being wheeled into theunit. My mother’s face
was covered by an oxygen mask, but shewas able to respond to my
voice with an exclamation. It wasthe last time she would be able to
do so.
I tried to accompany her into the intensive care unit but could
not. The physician in charge firmly instructed me to stay outside
until my mother was “taken care of.” An hour later, when I was
allowed to see her, she was attached to a respirator and hada
feeding tube inserted down her throat.
What had happened? My mother had left a carefully updated powerof
attorney for health care with her physician, her lawyer,and her
offspring, reaffirming her determination not to haveher life
prolonged by artificial means. Exactly the oppositeof what she had
wished had occurred; the living will had becomeinvisible just when
it was needed most. My mother’s physician,it turned out, had not
notified the medical team of her advancedirective, and the hospital,
despite a 1990 federal law thatmandates such inquiries, did not ask
my mother whether she hadsuch a document. And I, in turn, had
neglected to check thatthe physicians and nurses knew about her
desire not to haveheroic measures used to prolong her life.
Over the ensuing 5 days, I came to understand how serious the
results of these omissions were. I found that I was dealing
with a bewildering array of medical specialists trained to prolong
lives, not to let patients die. During the first day that my
mother was in the intensive care unit, I asked her physicianto
make it clear to the attending medical personnel that shehad given
me durable power of attorney for health care. He readilycomplied. I
was told that my mother had had a stroke and thatshe would not
recover from her hemiparalysis. The physicianshoped to fit her with
a tracheostomy tube and send her to anursing home. From my many
conversations with my mother aboutquality of life and medical care,
I knew that she did not wantsuch a life. Yet my mother’s wishes, as
they were understoodby her family physician and her daughter, were
now subject tothe approval of strangers: the cadre of cardiologists,
neurologists,and pulmonologists who attended her.
None of these specialists knew my mother, and they all had their
convictions about how to do best by her. Most notably, they
varied in the latitude with which they were willing to interpret
her wishes (I had become her spokesperson; my only sibling,an
older brother, was out of the country). The variance waswidest
between my mother’s wishes and those of the attendingpulmonologist:
He made it clear that his approach was conservativein such matters.
He found it nearly impossible to accept thatmy mother would prefer
death to living with hemiparalysis anda tracheotomy. Over the next
several days, our conversationsbecame terser and tenser as he raised
such questions as whetherperhaps I was an ageist, or an ideologue
interested only inabstract principles. I asked the family physician
whether anotherpulmonologist could attend the case, only to be told
that allof the pulmonologists accredited to the hospital shared
similarbeliefs.
My stress built over the ensuing 5 days as my mother’s distress
was palpable. She successfully tore out her feeding tube only
to have it reinserted and her restraints tightened. An attempt
to remove my mother from the ventilator failed; her swollen
larynx prevented her from breathing on her own. I had agreedto
the removal on the condition that I be allowed to stay withher
during the attempt. Afterward, the pulmonologist declaredhimself
pleased that he had been able to reinsert her breathingtube, barely
in time. He seemed, however, unaware of how agitatedthis process had
left her. I asked that she be sedated, andan obliging nurse obtained
permission for this.
The hospital increasingly came to feel like alien territory,full
of medical strangers intent on maintaining my mother’svital signs at
all costs. During her ordeal, my mother becameincreasingly frantic.
She continually leaned against her restraints,trying to get her hand
close enough to her feeding tube to tearit out again. My sense of
being trapped in a nightmare intensified.
In the long days that I spent with her, I learned to read her
increasing anguish through her refusals to have her mouth swabbed
or to have the secretions in it suctioned dry. One afternoon,
she rapped her cuffed hand angrily against the bed bars to get
my attention, then motioned toward the tubes that she clearly
wished to have removed. The next day, when I was holding her
hand, she squeezed mine so hard that I winced in pain, and after
that a breakthrough came: We were able to devise a mode of talking
to each other.
In response to a yes or no question, my mother nodded or shookher
head. Once this mode of communication was clearly established,I was
able to ask my mother twice–with her nurse as a witness,and with 4
hours between each question–whether she wished todie. My very
clearheaded and determined mother thus was able,finally, to assert
herself for the necessary last time. Thenurse informed the
physicians of what she had seen. Then thewait began. The hours
dragged by as the specialists were persuaded,one by one, to give
their consent. Finally, a technician wasallowed to pull the tube
from my mother’s throat. None of thephysicians who had attended her
was present.
In retrospect, as I review the events of those painful 5 days,
there seems to be no simple explanation for what happened. Physicians
are trained to save lives, and most of us would not have it
otherwise. In their conversations with me, my mother’s physicians
related success stories: A paralyzed man with his faculties
intact had lived a full decade longer with a tracheostomy; a
woman (the mother-in-law of one of the physicians) with a condition
similar to my mother’s was still alive to that day, semiparalyzed,
in a nursing home. I asked this physician whether he thought
his mother-in-law was satisfied with this outcome. He responded,
honestly enough, that he did not know.
These stories were intended to be helpful, to open up for me
possibilities beyond the intensive care unit. But in the end
they turned into so many cautionary tales. Most of the stories
seemed to define success as survival and ended with the patient’s
departure from the hospital. The quality of life after that
departure was, at best, moot. Everything I knew about my mother
made me certain that she did not desire to continue her lifein
a semiparalyzed condition.
Subsequently, I wondered if the fact that so many physicians
attended my mother may have restrained any one of them from
helping me Figure outhow to be effective on her behalf. After
all, critical care physicians must work with each other dayin
and day out. The cost of challenging the judgment or sensibilitiesof
any member of the medical team must be high indeed. Any singlecase,
by contrast, is a brief bird of passage.
In the weeks that followed my mother’s ordeal, I listened, with
the rest of the United States, to accounts of the deaths of
Richard Nixon and Jacqueline Onassis. Because both of them had
living wills, the commentators explained, their lives wouldnot
be prolonged by mechanical means. Angry and frustrated atthe way my
mother had died, I wondered: Do you have to be notableto be heard in
our society?
All told, I think that my mother was fortunate. In the longrun,
her wishes were followed; 5 days in the intensive careunit compares
favorably with the experiences of many other elderlypersons. But the
experience was harrowing, for her and for me.What is routine for
hospital staff is all too often the firstexperience of its kind for
critically ill patients and theirfamilies. I had a very steep and
painful learning curve. Thisessay is written in the hope that
hospitals will devise proceduresso that patients and their families
can, with less pain andperplexity than I experienced, decide when
and how death arrives.
Requests for Reprints: Thomas A. Raffin, MD, Division of Pulmonary
and Clinical Care Medicine, Stanford University Medical Center,
MC 5236, 300 Pasteur Drive, Room H3151, Stanford, CA 94305-5236.
Current Author Address: Dr. Hanbsot: Department of Political
Science, Stanford University, Stanford, CA 94305-2044.
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 Top Author & ArticleInfo |
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Stanford University,
Stanford, CA 94305-2044
Ann Intern Med. 1996;125:149-151.
This article has been cited by other
articles:
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  T. J. Prendergast and K. A. Puntillo Withdrawal of Life Support: Intensive Caring at the End of Life JAMA, December 4, 2002; 288(21): 2732 – 2740. [Abstract] [Full Text] [PDF]
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 R. S. Morrison, D. E. Meier, and C. K. Cassel When Too Much is Too Little N. Engl. J. Med., December 5, 1996; 335(23): 1755 – 1759. [Full Text] [PDF]
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 T. J. PRENDERGAST, M. T. CLAESSENS, and J. M. LUCE A National Survey of End-of-life Care for Critically Ill Patients Am. J. Respir. Crit. Care Med., October 1, 1998; 158(4): 1163 – 1167. [Abstract] [Full Text] |
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