TEXTOS DE ENARM 2007-2

8/9/2019 TEXTOS DE ENARM 2007-2

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Attending Death With DignityA nurse finds herself the center of controversy after effectively managing pain for

a dying patient.

b y S h a r o n L a D u k e

He r n a m e w a s w i l l i e d o b i s k y . Thewidowed matriarch of a community-oriented family, she had been a wife,

mother, Sunday school teacher, volunteer, andneighbor. For many years she and her husbandhad owned and operated The Surprise, a depart-

ment store in our small rural town. As a child, Ihad been fascinated by the pneumatic tubes thatwhisked messages from one part of the largestore to the other.

Willie once had been beautiful. Now in hereighties, her face reshaped by years of steroid useto control her emphysema, she was dying byinches, as her son put it, and had been formonths before landing in our hospital for the lasttime. In the emergency department (ED), lungfailure had raised the carbon dioxide level in her

blood so high that she did not have the mentalcapacity to make her own health care decisions.Anticipating this day, she had named her friendMary, a retired nurse, as her health care agent.She had discussed her wishes with Mary, filledout an advance directive, and provided a copy tothe hospital. But when Mary told the ED staffthat Willie did not want to go on a ventilator andhad completed paperwork to that end, the hos-pital could not locate the document. And Williehad neglected to give Mary a copy. Willie ended

up on the ventilator.Often when patients go on the ventilator, they

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N a r r a t i v e M a t t e r s

DOI 10.1377/hlthaff.23.3.222 2004 Project HOPEThe People-to-People Health Foundation, Inc.

Sharon LaDuke( [email protected]) has beena registered nurse formorethan twenty years,workinginacute care, education, human resources, and information management.She is themanagerof a medical-surgicalunit in a rural communityhospitaland writes about nursesexperiences with thelegalsystem.

PREFACE: At the end of an illness orin old age, dying without pain at a timeof our choosing seems like an entitle-ment to many of us, especially babyboomers used to controlling key aspectsof our lives. Health directives, livingwills, and medical ethiciststo help medi-

ate between patients needs and institu-tional exigencies are mechanisms at ourdisposal to help ensure that we die agood death when the time comes. Yetsuch deaths are by no means guaranteed.It is not unusual for institutions and

providers to lack theskills, systemic sup-port, and comfort leveleven when le-gal backup existsneeded to deliver thekindofend-of-lifecaremanyofussaywewill want. Sharon LaDuke, a nurse whoin the 1990s administered pain relief

conforming to a patients and familyswishes, recounts the trauma of facingcriminal charges for what she believeswas appropriatecare delivery. PhysicianNeil Calman encountered what he foundto be a moral dilemma: wanting to re-spond to an elderly woman requestingthathe help herdie but being legally con-strained from acceding to her wishes.Despite the increase in pain manage-ment and end-of-life training in nursingand medical schools, these two storiesshow the difficulty providers and pa-

tients can still find when dealing withterminal events.


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can come off again and survive after the reversible elements of their illness aretreated. But after a week it became clear that Willies ailments were not reversible.Willie was a strong and proud woman whose quality of life had been poor forsome time. She had always said that she did not want to live on a machine, and herloved ones supported her wishes. After multiple discussions among her healthcare agent, her family, and the physician and nurses, the decision was made to haveher breathing tube removed.

Her family probably thought she would dieright away, but she did not. Her relief at beingoff the breathing machine, which was replacedby an oxygen mask, was soon followed by in-creasing dyspneaa relentness, suffocatingshortness of breath. Not like the kind you getfrom running up f lights of stairs, more like the

panic you felt as a kid when your big brotherheld you underwater and you struggled to break free. Oxygen was being pipedinto Willie through a mask, but her lungs had failed and she could not use the air.Twenty-plus years of nursing experience has taught me that dyspnea at the end oflife is far more likely than pain.

Easing Suffering

Bo t h w i l l i e s f a m i l y a n d h e a l t h c a r e t e a m had anticipated thisproblem, so the physician had written orders for analgesia and sedation.These drugs reduce breathing difficulties as well as the patients awareness

of them. Willie was to receive a continuous, pump-controlled intravenous drip ofa morphine-like drug called Fentanyl and intermittent doses of Versed, a sedativedrug. At first these orders were adequate. But as the hours passed and Willie be-gan to tire from the effort of breathing, her dyspnea worsened. Despite the physi-cians promise to her three children that their mother would be kept comfortable,she was not.

By the time I took over Willies care, she had been off the ventilator for a day. Ev-ery breath was now a struggle, and her gray face was contorted in a grimace. Herexhaustion and anxiety were preventing her and her frantic family from using thetime left to prepare for their final parting. When I informed the physician that thepresent orders for Fentanyl and Versed were not controlling Willies dyspnea, he

increased the rate of the continuous infusion and wrote other orders that wouldgive me the tools I needed to keep her comfortable. The new doses, however, werescary to me. Even though I knew that the only thing we could now do for Williewas to make her comfortable, I had never given anyone such big doses at suchshort intervals. I was, after all, a critical care nurseskilled in preventing deterio-ration and restoring normal functioning in a clinical setting focused on life-


H E A LT H A F FA I R S ~ Vo l u m e 2 3 , N u m b e r 3 2 2 3

Every breath was now a

struggle, and her gray face

was contorted in a

grimace.


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sustaining therapy. I was trained for something entirely different from what wasnow needed.

However, I had recently been studying the care of the dying, particularly pa-tients removed from the ventilator, so I knew that the new orders and plan of carewere medically appropriate. I administered the medications as ordered. Williestopped trying to push the oxygen mask away, sank back into the bed, relaxed herfurrowed brow, and stopped gasping for breath. Family members then took turnsholding her hand, telling her how much she meant to them, and saying goodbye.They recalled old memories and recited prayers. Since I was a longtime lead so-prano in my church choirthe same church as Willies, although I hadnt knownher personallythe family asked me to sing Amazing Grace at her bedside,which I did. Within a few hours Willie died peacefully, her family full of gratitude.

Willie might have been at peace, but I wasnt. Despite my belief that the carethat had been provided was appropriate, I had stepped outside my moral comfort

zone into unknown territory. I had been driven by Willies and her familys needsbut had given no thought to how I might feel about being the last person to medi-cate a dying patient. When Willies suffering was over, the family home, and thedocumentation completed, I was alone with my thoughts and began to questionmyself. It is widely known and well documented that nurses and physicians canfeel guilt after ordering or administering analgesics and sedatives to people whoare dying. Thats because these medications have a double effect: As they ease orend the symptoms associated with dying, they also can potentially cause vitalsigns to deterioratein essence, hastening death. Many clinicians have trouble ona moral level distinguishing between administering medications that might has-ten deathan act that is required if the dying are to receive appropriate careand

giving drugs in order to hasten death, which is euthanasia.So I was uncomfortable, and Im not the kind of person who keeps things to my-self. Over several days I told a few key people how I felt about this event, using thewordeuthanasia each time. My nurse colleague nodded sympathetically. My minis-ter figured I was just grieving. A physician colleague (not the patients doctor)said, Thats what we do. Forget about it. The nurse administrator, on the otherhand, replied, Euthanasia is against the law in this state.

Facing A Backlash

Yo u d t h i n k t h a t l a s t c o m m e n t w o u l d h a v e t o l d m e right then

and there that I had to explain that my using the E word was emotionalhyperbole. But I had a good working relationship with this administrator,

and she had always been very supportive. I thought she would mull it over and thatwe would have more discussions about not only this patient, but the hospitalsend-of-life care generally. But she did not understand. She felt obligated to conveythe discussion to the risk manager, and an investigation was launched. When I re-

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quested that the case be brought before the hospitals ethics committee, an admin-istrator informed me that euthanasia is not an ethical issue. Shocked into silence,I didnt have the wits about me to point out that the committee would help clarifythat what had happened was not euthanasia.

One could argue that if I had kept my mouth shut in the first place, nothingwould have happened. But ill-advised words cannot justify the subsequent ac-tions of hospital officials. Although neither the internal nor external peer reviewsubsequently performed found fault with my care, the hospital reported the inci-dent to the state department of health. The investigation then conducted by thatdepartment resulted in multiple citations against the hospital for failure to ad-dress the needs of the terminally ill and one against the physician, but noneagainst me. Nevertheless, the hospital referred the matter to the state board ofnursing and the county district attorney.

A fewdays after I met with the risk manager, the hospital placed me on adminis-

trative leave. I was paralyzed by fear and depression. I did my grocery shopping at3 a.m. so that I wouldnt have to face anyone. But I also began to read everything Icould get my hands on about end-of-life care.The more I read, the more I realized that I haddone nothing wrong. In fact, I had done nearlyeverything right. My fighting spirit returned,assisted by a well-placed kick in the rear frommy husband and the Dobiskys outrage at thehospitals actions. I hired two very competentattorneys to represent me in the two differentaspects of the casecriminal and professional

(license-related). Not many nurses have the financial resources to do that; I waslucky.After some six months of leave, the hospital offered me the opportunity to re-

sign. Against my attorneys advice, I declined and was fired, as expected. What Ididnt expect was that the hospitals lawyer would state in writing that I was firedfor committing euthanasia, or that the hospitals CEO would allegedly refer to meas Nurse Kevorkian at a public gathering. The disrespect and arrogance of theseofficials was galvanizing. After hiring a third lawyer, I filed two lawsuits againsthospital leaders: one related to the termination of employment on a false premise,the other for slander and other alleged wrongdoings. The Dobisky family also filedsuit, including among the defendants a nurse who had allegedly failed to provide

adequate relief of discomfort for their mother. Now the hospital had one nurse fac-ing criminal charges because she medicated a patient, and one facing a malpracticesuit because he didnt.



Now the hospital had one

nurse facing criminal

charges because she

medicated a patient, and

one facing a malpractice

suit because he didnt.


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Exoneration

Wi t h t h e f i l i n g o f t h e c i v i l s u i t s , the story broke in the local

papers. Shortly after that, the district attorney closed the investigationinto Willies death for lack of evidence. The threat of state troopersshowing up at my house with handcuffs was over. Now I had to deal only withthe professional disciplinary and civil aspects of this three-horned dilemma. I livein an at-will employment state, and in due time the courts found that without anemployment contract I could be fired for any reason, even if the reason was false.That left me with the lawsuit for slander. As you might expect, this suit was notquickly resolved. The three years between the public disclosure of the accusationand the settlement of the lawsuit were not easy for me and my family, the Dobiskyfamily, or the hospital and its employees. But I found support everywhere I went,from the administrative nurse at the nearby hospital that hired me as a supervisor

in spite of everything, to nurse colleagues who lobbied elected representatives andother authorities on my behalf, to the state nurses association, which saw in mycase the practice implications for all nurses who are caring for the dying. Mychurch, the community, the local media, and even some independent-minded hos-pital board members also supported me.

The hospital did not fare as well. Headlines related to the case appeared witheach new legal development. For two years it seemed that not a Sunday went bywithout at least one letter to the editor disparaging hospital leadership and itschoice of big city legal representation. Board members confided that the hospitalwas losing its donor base. Pressure mounted to settle the case. Several develop-ments finally made that possible. First, the state board of nursing did not find me

guilty of professional misconduct. Second, two of the three administrators in-volved in my case had left the hospital, and the third had been reassigned. Third, atthe suggestion of an influential attorney who came to my aid pro bono, I directlycontacted the president of the hospitals board and suggested that we bypass ourlawyers and see if we could negotiate a settlement. I had never been looking foranything more than re-employment and reimbursement of legal fees and lostwages, and the Dobisky family had pledged to drop their own lawsuit if mine wassettled. So we were able to come to an agreement in short order.

Ive been back at the hospital for almost six years now. It was a pleasure to heara key physician refer to what happened as the darkest chapter in the hospitals his-tory and to say that the only thing I did wrong was to be ten years ahead of every-

body else. It was a long battle, one that most nurses would not have had the re-sources to fight. It was a battle I should not have had to engage in.

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The War Continues

Un f o r t u n a t e ly, t h e e n d - o f - l i f e c a r e w a r i s f a r f r o m o v e r .

Much more has been done to educate providers in pain management sinceWillies death in 1995. For instance, many nursing and medical collegeshave integrated end-of-life care into their curricula. But despite a national push forsuch training, not all clinicians are competent in the management of the dying,know how to switch their focus from quantity to quality of life, or have the inter-personal skills to discuss such matters with patients and their families. Physiciansunderprescribe and nurses underadminister an-algesics and sedatives, giving doses that makethemselves, not the patient, comfortable. Evi-dence abounds in the health care literature thatlots of doctors and nurses feel the same ambiva-

lence I did. Yet end-of-life experts often are notbrought in to assist with care until hours beforedeath occurs, if at all. The dying are kept in theintensive care unit despite research-based evi-dence that even well-endowed university hospitals have been unable to ensurethat patients in intensive care die comfortably. If I hadnt asserted myself aboutWillies need for more aggressive pain management, and been willing to personallyprovide it, she would have died exactly the kind of death that she and her familyhad sought to avoid, the kind that still takes place every day in hospitals across thecountry.

Government and hospital policies create risk for anyone prescribing and ad-

ministering controlled substances. Legal systems tend to favor parties with levelsof economic resources and expert legal representation typically not available tonurses. Ironically, while professional boards focus resources on the criminality ofoverprescribing, civil courts award damages to survivors for inadequately treatedpain. Angels of deathnurses who have taken upon themselves to decide whenpatients should diemake headline news every few years, while angels of mercystruggle to carry out what the U.S. Supreme Court declared in 1997 to be the right ofevery citizen: effective palliative care, regardless of whether that carehastens death.

As Frank Dobisky, Willies surviving son, told me, Nurses should never have tobe put in the position where they feel guilty for doing their job. Clearer, more con-sistent rules and regulations at state and institutional levels, together with stron-

ger protections and support for physicians who order and nurses who administerend-of-life pain management, would help ensure that clinicians dont have tosecond-guess themselves when a patient like Willie asks for effective pain allevia-tion. Someday each and every one of us could be in Willies position. As patientswe will want our bedside nurses and physicians to have the support they need tobest meet our needs for a comfortable and dignified death.



Physicians underprescribe

and nurses underadminister

analgesics and sedatives,

giving doses that make

themselves, not the patient,

comfortable.

TEXTOS DE ENARM 2007-2

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