Say What You Mean and Mean What You Say: A Patient's Conflicting Preferences for Care

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<ul><li><p>14 H A S T I N G S C E N T E R R E P O R T January-February 2006</p><p>LW, a sixty-seven-year-old womansuffering from ovarian cancer,has been sent from the rehabilita-tion facility where she lives to the emer-gency room for treatment of a smallbowel obstruction. In the emergencyroom, LW directs that her husband offorty-two years make all medical deci-sions if she becomes incapacitated. Shetells her admitting physician that shehas no formal advance care directiveand does not wish to limit any medicaltherapies, including cardiopulmonaryresuscitation (CPR).</p><p>During her hospitalization, LWscancer advances, causing recurrentbowel obstruction. Doctors perform</p><p>palliative surgery, and afterward, LWcannot be weaned from mechanicalventilation. She soon develops kidneyfailure and needs regular dialysis. Shealso depends on intravenous medicationto maintain her blood pressure. Re-markably, she remains alert and com-municative.</p><p>More than two months into her hos-pital stay, LWs attending physician re-views each treatment with her, as well asher general condition (guarded) and herprognosis to survive (poor). LW wishesto continue all treatments since theyallow her to enjoy daily visits with herfamily. Her doctor supports this wish,but he informs her that she is at risk for</p><p>cardiac arrest and, should she suffer it,her chances of surviving are remote. Hefears CPR would cause needless suffer-ing during her last moments of life.</p><p>LW accepts her physicians assess-ment and agrees that she doesnt wantCPR. However, she seems reluctant toagree to a formal do-not-resuscitate(DNR) order, so two days later, he asksher again. She again states that she doesnot want to be resuscitated. Her doctorthen asks her husband to discuss herpreference with her, but when he doesso, she denies ever saying that she does-nt want to be resuscitated.</p><p>The next day, LW tells her puzzleddoctor that she lied to her husband toease his painshe believed he wouldobject to a DNR order and so assumeda request for one would only magnifyhis anguish. Her doctor tells LWs hus-band this privately, hoping he will drophis objection to a DNR order, but hestill wants CPR attempted even know-ing she doesnt. He says he cant let hergo and is willing to take any chance toprolong her life, even briefly.</p><p>Several days later, LW develops car-diac arrest. Should her physician at-tempt CPR?</p><p>by Jeffrey T. Berger</p><p>Normative practice calls for physi-cians to treat patients according totheir wishes. Since it appears that LWsmost rational preference was to avoidthe trauma of CPR, her physicianswould violate this norm by attemptingresuscitation. However, it is not clearwhether LWs most authentic preferencewas to avoid CPR or to tend to her hus-bands needs.</p><p>Patients, when developing their pref-erences for treatment, often consider aseries of complex social, emotional, and</p><p>existential concerns. To downscale thiscomplexity, clinicians often solicit fromtheir patients narrow, simplified, med-icalized treatment preferences, viewingpatients decisions as less legitimate ifthey take into account broader concernssuch as family needs. But are ones wish-es less authentic or more authenticwhen considerations of family interestsare subtracted from the discussion? Formany patients, their family interests areself-interests.</p><p>What the patient wants is oftenunderstood as what the patient wantsfor him or herself, assuming he or shehas no concerns regarding the effects ofthe decision on people near and dear.</p><p>Yet while it is tidier for clinicians toview patients as socially unencumberedindividuals, many patients define them-selves significantlyeven primarilyinterms of family. The distinction be-tween patients self interests and pa-tients family interests is largely artifi-cialmost of us live within some formof intimate social structure. Our livesare filled with compromises and sacri-fices for people for whom we caredeeply. We sacrifice financially for ourchildren, we dedicate time to our elder-ly parents and friends in need, and weforego opportunities for individual en-joyment and benefit for our familiesgood. We do these things willingly and</p><p>commentary</p><p>Say What You Mean and MeanWhat You Say: A Patients</p><p>Conflicting Preferences for Care</p><p>case study</p></li><li><p>H A S T I N G S C E N T E R R E P O R T 15January-February 2006</p><p>often quite lovingly. Our choices notonly help people we love, but help us tolive according to personal requirementsof morality, virtuosity, religiosity, andculture.</p><p>LWs concerns for family may reflectself-interest as well. For example, shemay deeply identify with her spousalrole as keeper of the household andfamily, and therefore sacrificing for herhusband would be consistent with herrole-related, and perhaps culturally me-diated, obligations. Or perhaps her reli-</p><p>gious beliefs encourage her to view sac-rifice and suffering as redeeming. It ischallenging to try to assess whetherthese sorts of deliberations are function-al or dysfunctional; yet supporting LWemotionally and pastorally may allowher to deliberate from a position ofgreater empowerment. </p><p>Still, health professionals are right-fully disconcerted by patient decisionsthat appear principally to reflect familymembers interests or benefit. Criticalassessment of patients preferences is es-</p><p>sential to protect the most vulnerablefrom falling under the influence of, orbeing exploited by, family memberswho are overly concerned with theirown interests. Presumably, most familymembers act with sincere motives. </p><p>If CPR is a medically viable option, Ibelieve LWs ambivalence should leadthe physicians to err on the side of at-tempting it, as her concern for her fam-ily may in fact be her most authentic in-terest.</p><p>by Martin Gunderson</p><p>When LW first entered the emer-gency room, she made a decisionnot to limit medical treatment. She waswilling to share this decision with herhusband and other family memberswhom she had admitted into the circleof medical confidentiality. There weregood reasons for her decision. She valuesher family relationships and knows itwould add to her husbands anguish forher to sign a DNR order. He wants herto do whatever is necessary to extend herlife, even for a short time. Without clearevidence to the contrary, I think weshould assume that her values and de-sires are genuine and not controlled ormanipulated by her husband. </p><p>For two months these desires guidedher treatment. Information from herphysician then persuaded her that CPRwould likely cause her needless suffer-ing, and she told him she did not wantCPR. But, in spite of the physicians re-quest, she did not sign a DNR orderthat would translate her desire into ac-tion. Nor did she tell her husband of herdesirein fact, she lied to him about</p><p>what she wants. In short, she expressedher desire without making a formal de-cision that could be shared with her hus-band. </p><p>She may seem to have acted irra-tionally, but I do not believe this is true.She has genuinely conflicting desiresand values. Her desire to keep her rela-tionship with her husband intact and tomitigate his anguish conflicts with herdesire to avoid suffering. She seems tobe trying to reconcile these conflictingvalues by telling her physician what shewants regarding CPR without making aformal decision that can be shared withher husband. It is not irrational for LWto have conflicting desires; nor is it irra-tional for her to express her desires, yetnot want a formal declaration that willbe shared with her husband. </p><p>In the end what she really seems towant is for the physician to allow her todie, without CPR and without tellingher husband. The physician cannot eth-ically do this, however. He needs to behonest with those LW has admitted toher circle of confidentiality. Of course,he could simply refuse to discuss LWsmedical care with her husband, but wecan reasonably assume that LW wouldnot want that, either. Moreover, herhusband would simply infer that LW</p><p>had opted not to have CPR. Alternative-ly, the physician could allow her diewithout attempting CPR and then tellher husband what happened. Thatwould preserve the physicians integrity,but it would be contrary to LWs desires.</p><p>I believe the physician should per-form CPR. While this would be con-trary to LWs desire to avoid unneces-sary suffering, it would be in accordwith her desire not to cause her husbandadditional anguish. It would also be inaccord with the decision she made whenshe entered the emergency room. Theoriginal decision to use CPR expressesone of LWs important values, and herrefusal to sign a DNR order leaves thatdecision standing. It is not clear whetherLWs recently expressed desire to avoidCPR counts as a decision or is merely anexpression of desire. It does not, howev-er, seem to be a decision on which thephysician can act without sacrificing in-tegrity or undercutting other values LWholds. Nor can it be assumed, now thatit is not possible to deceive her husband,that LWs desire to avoid CPR would bethe dominant one. In light of her con-flicting desires the physician should de-cide on the basis of the clear decisionLW made and shared with her medicalconfidants upon entering the hospital.</p><p>commentary</p></li></ul>