Case Studies: The Transplant Baby from Outer Space

zyxwvutsr zyxwv zyxwvu zyxwvuts zyxwvuts zyxwvutsr zyxwvutsrq zyxwvut Hastings Center Report, July-August 1992 Carol M, age twenty-one, was dropped off at a community hospital by a trucker who promptly disap peared. She had about thirty motel keys fmm all overthe United States in her possession. The staff desaibed her behavior as bizarre, hostile, and noncooperative. The diagnoses of acute abdomen and schizophrenia were made. As she refused s q m y , she was referred to a hospital with better psychiatric facilities for evaluation of competency and further treatment. Upon admission to the second emergency room, Ms. M signed the routine q u e s t for treatment with a fictitiolls name. Such history as could be obtaiued was notable in its mcom sistencies. Physical findings and laboratory data supported the diagne sis of acute abdomen. Five surgical and g~necobgicalspecialipts agreed that appendicitis was the most likely diagnosis and recommended surgical exploration. Dr. S, the staff psychiatrist on duty, was called to decide whether the patient was competent to give permission for this procedure. Ms. Mwas withdrawn and noncommunicative. She sat hunched over, leaningon the examhhg table, a neat, attractive young girl with blue jeans, pea jacket, and duffel bag piled nearby. When Dr. S brought up the q d o n of surgery,Ms. M said, “If I let them take everything out there won’t be anything left in me by the end of the year.” She claimed that she had once been treated for similar symp CASE STUDIES The Transplant Baby from Outer Space tion to allow the staff to locate her scess was found and a n o d appem family by phone in another stak. Her mother confirmed the diagne sis of schizophrenia. Ms. M had aL ready had two prolonged psychiatric hospitalizations involving treatment by psychotropic a j p t s and psyche therapy. In one hospitalization,she ap pears to have been overdosed,with a resultant phobia about hospitals and doctors. She had disappeared at a point when the family were trying agaiu to obtaininpatient treatmentfor ~ the her. With two physiciansa l w a on line, Up. M’s medical condition was explained to her mother, who requested that any indicated treatment inciuding lapamtomy be carried out. Dr. S decided there was now ade quate evidence of a definable mental disorder that impaired Ms. wsjudgment sufficiently to keep her from making a rational decision about her treatment He declared her to be incompetentandcalled the countyjudge torequestpemnhiontoadmitherand proceed with surgery. During the seven hours it took to complete the workup and obtainlegal clearance Ms. M remained voluntarily m the emergencyroom. At surgery a right t u b v a r i a a a b diu removed.After surgeryMS.Mwas cheerful, responsive, and f&ndly, although her thought processes were disorganized and the content was clearly d e l u s i o d e told Dr.S she was a transplant baby from outer space with 900siblingsin the Mideast. She was started on a psychotropic agent,andDr. S w a s r e d t h a t t h e decision to declare! Ms. M incompetent had been jlrstified. When she was ready for from the GYN service Ms. M agreed to look over the psychiatry unit, 4 though she indicated she did not want further treatment. The psychiatrist who saw her there decided not to mquest involuntary commitment since she had demonstrated basic survival iostinas by getting herself dropped off at a hospital when she developed her abdominal pain. In his opinion, her plan to get m touch againwith the truckdriverandreturntoherprevious life stylewas a viable option. When last seen,Ms. Mwas headingfor the freeway with her bag on her shoulder. How competent must a patient be to refuse treatment? Should Ms.M’s refusal of surgery have been honored? zy zyxwvuts tom “withahypo,”andthatthatwas the treatmentshewantednow.Shedid k U Dr. S she could have surgery only with her father‘s permission,and p vided sufficient identifying informa- he issue of marginal capacity portrayed in this case puts society on the horns of a dilemma. Unless society allows physicians a relativelyfreehand in treating patients at the margins of competency, these patients may not receive therapies they need without delay or COMMENTARY by Larry Gostin ment The cost here is measured in terms of patient autonomy and dignity. As a civil libertarian (former head of the British Civil Liberties Union), I believe that recognition of a patient’s right to autonomy and seKdetermination is critically important to preserve her dignity. But, as former head of the National Association for Mental Health in Great Britain, I also believe it does not always serve the person’s interests to allow her to refuse treat- zyxwvutsrqpon Lmry Gastin is executivedir- American Sot@ o f h &?Mediam, Baston,Mass. encumbrance. The cost here is measured in terms of the health, perhaps life, of the patient. On the other hand, allowingphysicians such freedom shps patients of their right to refuse treat- 24 zyxwv zyxwvuts Hastings Center Report, July-August 1992 ment that is essential to her health or life. To deny a truly incompetent patient the most beneficial treatment isjust as wrong as imposing treatment againstthewillofacompetentpatient In each case the question must be put, Can the patient understand the nature, purpose, and effects of the treatment? Many of the reasons given ostensibly to justify treatment without consent are in&cient. The fact that Carol M had a diagnosis of schizophrenia, or any other major mental illness, does not in itselfjustifya finding of incompetency. Even her delusional system and need for psychotropicmedication does not render her incompetent. A person with a serious mental illness may be competent for certain purposes or during certain times, but incompetent for other purposes or at other times. A psychotic condition with delusions, while it may impair a person’s judgment about a variety of decisions she must make in life, need not deprive her of rationality in respect to medical treatment Nor does the fact that her decision Wered from the judgment of her doctors mean that she is incompetent Finally, the fact that she may have appreciatedthe intervention after the fact and thanked her physicians (Alan Stone’s “thank you” theory) does not prove that the decision to treat was the proper decision. Nevertheless, the facts of the case suggest that Carol M’s refusal of surgery was properly overridden. The relevant facts are that there were serious questions about her capacity to consent; her closest family member requested treatment; five specialists determinedthat treatmentwas important to her physical health; she was assessed to be incompetent by mental health professionalswho were not involved in her treatment; and a court concurred that she was incompetent and in need of treatment. These authorities judged that she did not truly understand the health risk she faced, and we are given no facts with which to conclude that they were incorrect It may be that a more sensitive a p proach, trying treatments more consistentwith Carol’swishes, would have been preferable-always presuming this ”less intrusive” approach would not have resulted in an irreversible deterioration in her health. It would, however, be callously insensitive to Carol’s humanity not to provide her with treatment essentialfor her health and well-being. his is a case in which the behaviorsof the patient needed interpretation as much as her symptoms needed dmgnosis and treatment First, it is evident that there was never a question of whether to perform the surgery or select an alternative treatment more in keeping with the patient’s expressed wishes. Had the patient been prepared to agree to surgery, the question of her competence to authorize itwould not have been raised. It was her refusal of surgery that initiated a search for “other” evidence of incompetence, and the discovery of previous diagne sis of schizophrenia “permitted”Dr. S to declare her incompetent and seek the court order. The confirmation of incompetence to consentfound in the patient’s delusional postoperative state is another disturbing aspect of this case. Many patients, otherwise normal in mentation, who enter a hospital for surgical treatmentexperiencewhat has earned its own name-hospital psychosis. We see no attempt to distinguish between that possible diagnosisand the diagne COMMENTARY spectingher particularway ofmaking decisionsinsteadof circumventingit. Her attempt to choose an altemative therapy, based on her past experiences, does not seem to have been seriously explored with the patient or to have been considered by the medical staff. Dr. S’s dismissalof her request to be treated medically rather than surgically,finessed through the “finding“ of incompetence, renders moot Ms. M’s own experience with her medical history, her own wishes, her own wisdom as to the events transpiring in her own body. Could not a bargain-and a useful one-have been struck by agreeing to start Ms. M on a nonsurgical course of treatment with antibiotics and ice packs, closely monitoring her symp toms and signs, provided that she would seriously consider surgery? In that way the long hours of waiting for legal clearance could have been put to good use, according this patient the dignity of treatment that she was prepared to accept and perhaps thereby strengthening her trust and confidence in the medical team. Instead,we are left with a patient whose intermittent autonomy is further undermined and whose trust in her ability ever to exercise it authoritativelyin a medical setting has once more been betrayed. zyxw zyxwvuts zyxwvut zyxw by Richard T. Hull sis of underlying, persistent schize phrenia of a degree that would render the patient wholly incapable of a valid consent Evidence obtained post hoc and used to justify a decision before skgery to deprive a patient of her autonomy smacks of a kind of opportunism. Her remark about obtaining her father’s permission cries for interpretation, yet seems to have been ignored. This remark was made before incompetence was declared, and so should have been viewed as either a request for the counsel of a trusted family member or as designating a proxy decisionmaker. Even when the history of involuntary ass* ciations with hospitals and physicians was discovered, the fact of her voluntarily seeking medical help despite a strong aversion to hospitals and physicians, together with a reasonable interpretation of her remark about her father’s permission, should have been grounds for re- 25