Elisabeth
\nHansot, PhD <\/span><\/a><\/p>\n<\/span><\/p>\n
15 July 1996 | Volume 125 Issue 2 | Pages
\n149-151<\/strong><\/span>
\n<\/span><\/p>\n <\/p>\n
\nMy mother, Georgia
\nHansot, died recently in the intensive careunit of a major hospital
\nin the eastern United States. She was87 years old. This is an
\naccount of the 5 days she spent inthe hospital from the point of
\nview of her daughter, a 57-year-oldprofessional woman who was
\ncharged with her mother’s power ofattorney for health care. My
\nintent is to convey the experienceof one person thrust into the
\nunfamiliar world of hospital routinesand intensive care units. My
\nmother’s experience died with her;I can describe only what I
\nexperienced and what I understoodher to be trying to
\ncommunicate.
\n<\/span><\/span><\/p>\nThis essay could as easily be entitled “There Are No Villains
\n<\/sup>Here.” Medical personnel, trained to save lives and not to let
\n<\/sup>patients die, exerted themselves to that end. Hospital staff
\n<\/sup>and the families of other patients in the intensive care unit,
\n<\/sup>as time and ability allowed, tried to comfort. Nonetheless,
\n<\/sup>those 5 days were among the loneliest and most disorienting
\n<\/sup>that I have ever experienced.
\n<\/span><\/span><\/p>\nAs I think back on it, I am astounded that I had so little inkling
\n<\/sup>of how hard it would be to help my mother have the death she
\n<\/sup>wanted. A widow of 6 years, my mother had retained the no-nonsense
\n<\/sup>attitude of her Kansan farming origins. She lived in an affluent
\n<\/sup>and stable community on the east coast, and she saw her physician
\n<\/sup>of 25 years routinely for checkups. When we talked together
\n<\/sup>about how she wanted to die, she was clear, consistent, and
\n<\/sup>matter-of-fact. She hoped for a swift death and wanted no unnecessary
\n<\/sup>prolongation of her life.
\n<\/span><\/span><\/p>\nEntrusted with a general power of attorney and a power of attorney
\n<\/sup>for health care, I believed that I could make decisions on her
\n<\/sup>behalf as she would want them made if she were to become
\nincapacitated.As it turned out, I was woefully unprepared for what
\nwas instore for her and for me.
\n<\/span><\/span><\/p>\nOn a spring morning in April, my mother abruptly became illand
\nwas promptly admitted to the local hospital. When I arrivedin the
\nlate afternoon, she was resting comfortably after a longday of
\ndiagnostic tests. Because she had been tired by the day’sordeal, I
\nstayed only briefly, promising to be back early inthe morning with
\nnewspapers and books. I left my number withthe nurse, in case of an
\nemergency.
\n<\/span><\/span><\/p>\nAt 2:00 the next morning, I was awakened by a call from thenight
\nnurse. My mother had suddenly taken a turn for the worseand was
\nbeing transferred to intensive care. I arrived on thehospital floor
\njust as the gurney was being wheeled into theunit. My mother’s face
\nwas covered by an oxygen mask, but shewas able to respond to my
\nvoice with an exclamation. It wasthe last time she would be able to
\ndo so.
\n<\/span><\/span><\/p>\nI tried to accompany her into the intensive care unit but could
\n<\/sup>not. The physician in charge firmly instructed me to stay outside
\n<\/sup>until my mother was “taken care of.” An hour later, when I was
\n<\/sup>allowed to see her, she was attached to a respirator and hada
\nfeeding tube inserted down her throat.
\n<\/span><\/span><\/p>\nWhat had happened? My mother had left a carefully updated powerof
\nattorney for health care with her physician, her lawyer,and her
\noffspring, reaffirming her determination not to haveher life
\nprolonged by artificial means. Exactly the oppositeof what she had
\nwished had occurred; the living will had becomeinvisible just when
\nit was needed most. My mother’s physician,it turned out, had not
\nnotified the medical team of her advancedirective, and the hospital,
\ndespite a 1990 federal law thatmandates such inquiries, did not ask
\nmy mother whether she hadsuch a document. And I, in turn, had
\nneglected to check thatthe physicians and nurses knew about her
\ndesire not to haveheroic measures used to prolong her life.
\n<\/sup>
\n<\/span><\/span><\/p>\nOver the ensuing 5 days, I came to understand how serious the
\n<\/sup>results of these omissions were. I found that I was dealing
\n<\/sup>with a bewildering array of medical specialists trained to prolong
\n<\/sup>lives, not to let patients die. During the first day that my
\n<\/sup>mother was in the intensive care unit, I asked her physicianto
\nmake it clear to the attending medical personnel that shehad given
\nme durable power of attorney for health care. He readilycomplied. I
\nwas told that my mother had had a stroke and thatshe would not
\nrecover from her hemiparalysis. The physicianshoped to fit her with
\na tracheostomy tube and send her to anursing home. From my many
\nconversations with my mother aboutquality of life and medical care,
\nI knew that she did not wantsuch a life. Yet my mother’s wishes, as
\nthey were understoodby her family physician and her daughter, were
\nnow subject tothe approval of strangers: the cadre of cardiologists,
\nneurologists,and pulmonologists who attended her.
\n<\/span><\/span><\/p>\nNone of these specialists knew my mother, and they all had their
\n<\/sup>convictions about how to do best by her. Most notably, they
\n<\/sup>varied in the latitude with which they were willing to interpret
\n<\/sup>her wishes (I had become her spokesperson; my only sibling,an
\nolder brother, was out of the country). The variance waswidest
\nbetween my mother’s wishes and those of the attendingpulmonologist:
\nHe made it clear that his approach was conservativein such matters.
\nHe found it nearly impossible to accept thatmy mother would prefer
\ndeath to living with hemiparalysis anda tracheotomy. Over the next
\nseveral days, our conversationsbecame terser and tenser as he raised
\nsuch questions as whetherperhaps I was an ageist, or an ideologue
\ninterested only inabstract principles. I asked the family physician
\nwhether anotherpulmonologist could attend the case, only to be told
\nthat allof the pulmonologists accredited to the hospital shared
\nsimilarbeliefs.
\n<\/span><\/span><\/p>\nMy stress built over the ensuing 5 days as my mother’s distress
\n<\/sup>was palpable. She successfully tore out her feeding tube only
\n<\/sup>to have it reinserted and her restraints tightened. An attempt
\n<\/sup>to remove my mother from the ventilator failed; her swollen
\n<\/sup>larynx prevented her from breathing on her own. I had agreedto
\nthe removal on the condition that I be allowed to stay withher
\nduring the attempt. Afterward, the pulmonologist declaredhimself
\npleased that he had been able to reinsert her breathingtube, barely
\nin time. He seemed, however, unaware of how agitatedthis process had
\nleft her. I asked that she be sedated, andan obliging nurse obtained
\npermission for this.
\n<\/span><\/span><\/p>\nThe hospital increasingly came to feel like alien territory,full
\nof medical strangers intent on maintaining my mother’svital signs at
\nall costs. During her ordeal, my mother becameincreasingly frantic.
\nShe continually leaned against her restraints,trying to get her hand
\nclose enough to her feeding tube to tearit out again. My sense of
\nbeing trapped in a nightmare intensified.
\n<\/span><\/span><\/p>\nIn the long days that I spent with her, I learned to read her
\n<\/sup>increasing anguish through her refusals to have her mouth swabbed
\n<\/sup>or to have the secretions in it suctioned dry. One afternoon,
\n<\/sup>she rapped her cuffed hand angrily against the bed bars to get
\n<\/sup>my attention, then motioned toward the tubes that she clearly
\n<\/sup>wished to have removed. The next day, when I was holding her
\n<\/sup>hand, she squeezed mine so hard that I winced in pain, and after
\n<\/sup>that a breakthrough came: We were able to devise a mode of talking
\n<\/sup>to each other.
\n<\/span><\/span><\/p>\nIn response to a yes or no question, my mother nodded or shookher
\nhead. Once this mode of communication was clearly established,I was
\nable to ask my mother twice–with her nurse as a witness,and with 4
\nhours between each question–whether she wished todie. My very
\nclearheaded and determined mother thus was able,finally, to assert
\nherself for the necessary last time. Thenurse informed the
\nphysicians of what she had seen. Then thewait began. The hours
\ndragged by as the specialists were persuaded,one by one, to give
\ntheir consent. Finally, a technician wasallowed to pull the tube
\nfrom my mother’s throat. None of thephysicians who had attended her
\nwas present.
\n<\/span><\/span><\/p>\nIn retrospect, as I review the events of those painful 5 days,
\n<\/sup>there seems to be no simple explanation for what happened. Physicians
\n<\/sup>are trained to save lives, and most of us would not have it
\n<\/sup>otherwise. In their conversations with me, my mother’s physicians
\n<\/sup>related success stories: A paralyzed man with his faculties
\n<\/sup>intact had lived a full decade longer with a tracheostomy; a
\n<\/sup>woman (the mother-in-law of one of the physicians) with a condition
\n<\/sup>similar to my mother’s was still alive to that day, semiparalyzed,
\n<\/sup>in a nursing home. I asked this physician whether he thought
\n<\/sup>his mother-in-law was satisfied with this outcome. He responded,
\n<\/sup>honestly enough, that he did not know.
\n<\/span><\/span><\/p>\nThese stories were intended to be helpful, to open up for me
\n<\/sup>possibilities beyond the intensive care unit. But in the end
\n<\/sup>they turned into so many cautionary tales. Most of the stories
\n<\/sup>seemed to define success as survival and ended with the patient’s
\n<\/sup>departure from the hospital. The quality of life after that
\n<\/sup>departure was, at best, moot. Everything I knew about my mother
\n<\/sup>made me certain that she did not desire to continue her lifein
\na semiparalyzed condition.
\n<\/span><\/span><\/p>\nSubsequently, I wondered if the fact that so many physicians
\n<\/sup>attended my mother may have restrained any one of them from
\n<\/sup>helping me Figure outhow to be effective on her behalf. After
\n<\/sup>all, critical care physicians must work with each other dayin
\nand day out. The cost of challenging the judgment or sensibilitiesof
\nany member of the medical team must be high indeed. Any singlecase,
\nby contrast, is a brief bird of passage.
\n<\/span><\/span><\/p>\nIn the weeks that followed my mother’s ordeal, I listened, with
\n<\/sup>the rest of the United States, to accounts of the deaths of
\n<\/sup>Richard Nixon and Jacqueline Onassis. Because both of them had
\n<\/sup>living wills, the commentators explained, their lives wouldnot
\nbe prolonged by mechanical means. Angry and frustrated atthe way my
\nmother had died, I wondered: Do you have to be notableto be heard in
\nour society?
\n<\/span><\/span><\/p>\nAll told, I think that my mother was fortunate. In the longrun,
\nher wishes were followed; 5 days in the intensive careunit compares
\nfavorably with the experiences of many other elderlypersons. But the
\nexperience was harrowing, for her and for me.What is routine for
\nhospital staff is all too often the firstexperience of its kind for
\ncritically ill patients and theirfamilies. I had a very steep and
\npainful learning curve. Thisessay is written in the hope that
\nhospitals will devise proceduresso that patients and their families
\ncan, with less pain andperplexity than I experienced, decide when
\nand how death arrives.
\n<\/span><\/span><\/p>\nRequests for Reprints: Thomas A. Raffin, MD, Division of Pulmonary
\n<\/sup>and Clinical Care Medicine, Stanford University Medical Center,
\n<\/sup>MC 5236, 300 Pasteur Drive, Room H3151, Stanford, CA 94305-5236.
\n<\/sup>
\n<\/span><\/span><\/p>\nCurrent Author Address: Dr. Hanbsot: Department of Political
\n<\/sup>Science, Stanford University, Stanford, CA 94305-2044.
\n<\/span><\/span><\/p>\n<\/a><\/span><\/p>\n\n\n\nAuthor and Article
\nInformation <\/span><\/p>\n |
![\"Annals\"](\"file:\/\/\/C:\/Documents%20and%20Settings\/LauraKoo\/Desktop\/www\/intern%20ambulatory%20block\/spring\/Ann%20Intern%20Med%20--%20A%20letter%20from%20a%20Patient%27s%20Daughter_files\/title.gif\")
<\/a><\/td>\n<\/tr>\n![\"Established](\"file:\/\/\/C:\/Documents%20and%20Settings\/LauraKoo\/Desktop\/www\/intern%20ambulatory%20block\/spring\/Ann%20Intern%20Med%20--%20A%20letter%20from%20a%20Patient%27s%20Daughter_files\/established2.gif\")
<\/td>\n<\/tr>\n<\/tbody>\n<\/table>\n<\/td>\n