~°7Regarding outstanding issues about legal implications, see NATIONAL HEALTH LAWYERS ASSOCIA-. TION, COLLOQUIUM REPORT ON LEGAL ISSUES ...
Psychology,PublicPolicy,and Law 1996,Vol.2, No. 1,73-95
Copyright1996bythe AmericanPsychologicalAssociation,lnc. 1076-8971/96/$3.00
M E A S U R I N G D E C I S I O N A L CAPACITY: Cautions on the Construction of a "Capacimeter" Marshall B. Kapp and Douglas Mossman Wright State University School of Medicine and University of Dayton School of Law In their work on the M a c A r t h u r T r e a t m e n t C o m p e t e n c e Study, Paul Appelbaum, Thomas Grisso, and their colleagues warn that their "experimental measures" of decisional capacity "should not be interpreted as though they provide determinations of legal incompetence to consent to treatment." The authors of this article do not believe that A p p e l b a u m et al.'s admonition is strong enough, and they identify and analyze the serious generic, inherent problems connected with any attempt to construct a universally acceptable version of a capacimeter. They suggest that the continuing search for the elusive " H o l y Grail" test of capacity proceed with great caution (if at all), and they conclude by urging that investigators and scholars devote their energies toward the development and dissemination of appropriate clinical practice parameters.
In the United States I at the end of the 20th century, medical decision making is predicated on the legal doctrine, 2 as well as the ethical principle, 3 of informed consent. The informed consent doctrine, in turn, is based on the assumption of a decision-making process that is voluntary, that is informed by an adequate disclosure of information to the patient or surrogate decision maker, and that involves an ultimate decision maker who has adequate cognitive and emotional capacity4 to Marshall B. Kapp, Department of Community Health and Department of Psychiatry, Wright State University School of Medicine and University of Dayton School of Law; Douglas Mossman, Department of Psychiatry, Wright State University School of Medicine and University of Dayton School of Law. Correspondence concerning this article should be addressed to Marshall B. Kapp, Department of Community Health, Wright State University School of Medicine, Dayton, Ohio 45435. 1For a comparative law perspective, see, e.g., DECISION-MAKINGAND PROBLEMSOF INCOMPETENCE (Andrew Grubbed., 1994); Michael Gunn, The Meaning of Incapacity, 2 MED. L. REV. 8 (1994) (both presenting a British perspective). 2See generally RUTH R. FADEN & TOM L. BEAUCHAMP,A HISTORY AND THEORY OF INFORMED CONSENT(1986); PAUL S. APFELBAUM,CHARLESW. LIDZ, & ALAN MEISEL, INFORMEDCONSENT:LEGAL THEORY AND CLINICALPRACTICE (1987); FAY A. ROZOVSKY,CONSENTTO TREATMENT:A PRACTICAL GUIDE (2d ed. 1990). 3On the ethical underpinnings of the informed consent doctrine, see generally PRESIDENT'S COMMISSIONFOR THE STUDY OF ETHICALPROBLEMSIN MEDICINEAND BIOMEDICALAND BEHAVIORAL RESEARCH,MAKINGHEALTHCARE DECISIONS:m REPORT ON THE ETHICALAND LEGALIMPLICATIONSOF INFORMEDCONSENTIN THE PATIENT--PRACTITIONERRELATIONSHIP(1982). 4The term capacity is used throughout this article. In everyday practice, this term usually is used interchangeably with competence, although technically competence traditionally has referred to a formal adjudication by a court regarding an individual's legal status, whereas capacity has been used to refer more broadly to working assessments by clinicians regarding an individual's ability to make specific kinds of decisions. See, e.g., John Mahler & Samuel Perry, Assessing Competency in the Physical(y Ill: Guidelines for Psychiatric Consultants, 39 HosP. & COMMUNITYPSYCHIATRY856 (1988). Complicating the language further is the recent trend in some jurisdictions for guardianship legislation to use the capacity terminology language to refer to judicial adjudications of legal status. See, e.g., Charles P. Sabatino, Competency: Refining Our Legal Fictions, in OLDER ADULTS' DECISION-MAKINGAND THE LAW 1-28 (Michael A. Stayer et al. eds., 1996).
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m a k e t h e p a r t i c u l a r d e c i s i o n at h a n d . T h e e t h i c a l p r i n c i p l e o f a u t o n o m y s o r s e l f - d e t e r m i n a t i o n t h a t lies at t h e h e a r t o f i n f o r m e d c o n s e n t is p r e d i c a t e d o n t h e n o t i o n t h a t c o n s e n t is g i v e n b y a n a u t o n o m o u s d e c i s i o n m a k e r . 6 I n this article, we e x a m i n e t h e p o t e n t i a l pitfalls a s s o c i a t e d w i t h a t t e m p t s to d e v e l o p a capacimeter, a n i n s t r u m e n t for g a u g i n g a p e r s o n ' s d e c i s i o n a l c a p a c i t y r e g a r d i n g m e d i c a l choices. 7 W e f o c u s p r i m a r i l y o n m a t t e r s r e l a t e d to a s s e s s i n g a n i n d i v i d u a l ' s c a p a c i t y to m a k e p a r t i c u l a r d e c i s i o n s a n d l e a v e a s i d e t h e m a n y t h o r n y issues s u r r o u n d i n g t h e a b i l i t y o r i n a b i l i t y o f c e r t a i n p e r s o n s to execute o r i m p l e m e n t s their decisions with or without external assistance. I m p a i r m e n t s in d e c i s i o n - m a k i n g c a p a c i t y m a y arise f r o m s e v e r a l etiologies. T o s i m p l i f y e x p o s i t i o n , we c o n c e n t r a t e p r i m a r i l y o n d e m e n t i a - i n d u c e d c o g n i t i v e i m p a i r m e n t s , w h i c h a p p e a r m o s t o f t e n in e l d e r l y p a t i e n t s . H o w e v e r , w e posit t h a t m o s t o f o u r a n a l y s i s will p e r t a i n , mutatis mutandem, to s i t u a t i o n s i n v o l v i n g p s y c h o s i s - i n d u c e d decision-making impairment. I n t h e m e d i c a l d e c i s i o n - m a k i n g a r e n a , " [ a ] l t h o u g h t h e r e is a c l e a r c o n s e n s u s t h a t it is e s s e n t i a l to assess d e c i s i o n - m a k i n g c a p a c i t y . . . . t h e r e is also a g r e e m e n t as to t h e 5On the principle of autonomy, see, e.g., GEORGEJ. AGICH, AUTONOMYAND LONG-TERMCARE (1993); Brian F. Hofland, Autonomy in Long Term Care:Background Issues and a ProgrammaticResponse, 28 GERONTOLOGIST3 (Supp. 1988). On the contrasting principle of beneficence, or doing good to others in terms of our perceptions of their best interests, see, e.g., EDMUNDD. PELLEGRINOt~ DAVID C. THOMASMA, FOR THE PATIENT'SGOOD: RESTORATIONOF BENEFICENCEIN HEALTHCARE(1988). 6Seegenerally William M. Altman et al.,Autonomy, Competence and Informed Consent in Long Term Care: Legal and PsychologicalPerspectives, 37 VILLadqOVAL. REV. 1671 (1992). 7Questions concerning the evaluation of a person's capacity to engage in other sorts of decisionmaking activities are not addressed here. Competence is no longer an all-or-nothing, monolithic concept. Instead, it entails a decision- or task-specific functional inquiry. Among the other sorts of decisional capacities or competencies that may require assessment are those pertaining to financial management, executing a will, and standing trial as a criminal defendant. For a state-by-state summary of case law regarding capacity to engage in specific legal transactions, see ARTHUR C. WALSH, BAIRD B. BROWN, KATHRYNKAYE,& JIM GRIGSBY,MENTALCAPACITY:LEGALANDMEDICALASPECTSOF ASSESSMENTAND TREATMENTApp. A-l-App. E-21 (2d ed. 1994). See also the attempt of these authors to construct a "Legal Capacity Questionnaire," at 5-1-5-42. For a discussion of the ethical issues raised in assessing competence for execution after criminal conviction, see Douglas Mossman, The Psychiatristand Execution Competence: Fording Murky Ethieal Waters, 43 CASEW. RES. L. REV. I (1992). 8philosopher Dart Coilopy has drawn a helpful distinction between decisional autonomy, on one hand, and executional autonomy (i.e., the ability to actually carry out one's decisions), on the other. See Dart J. Collopy, Autonomy in Long-Term Care: Some Conceptual Distinctions, 28 GERONTOLOGIST10 (Supp. 1988). An extensive literature has been developed in gerontology regarding evaluation of older persons' "everyday competence." See Sherry L. Willis, Assessing Everyday Competence in the Cognitively Challenged Elderly, in OLDERADULTS'DEClSION-M,~a~INGANDTHE LAW 87-127 (Michael A. Smyer et al. eds., 1996); Sherry L. Willis, Cognition and Everyday Competence, in ANNUAL REVIEW OF GERONTOLOGYAND GERIATRICS,80--109 (K. Warner Schaie & M. Powell Lawton eds. 1991). Everyday competence refers largely to specific persons' ability to perform successfully activities of daily living (ADLs; e.g., eating, bathing, grooming, toileting, dressing, and ambulation) and instrumental activities of daily living (IADLs; e.g., managing finances, driving, preparing meals, taking medication, shopping, housework, and ability to use the telephone). Assessment of ADLs and IADLs is essential for the planning and delivery of service plans and for determining eligibility for particular services. See generally M. Powell Lawton & Elaine M. Brody, Assessment of Older People: Self-Maintaining and Instrumental Activities of Daily Living, 9 GERONTOLOGIST179 (1969); DUKE UNIVERSITYCENTERFOR THE STUDYOF AGING, MULTIDIMENSIONAL FUNCTIONALASSESSMENT:THE OARSMETHODOLOGY(2nd ed. 1978); Gerda G. Fillenbaum, Screeningthe Elderly: A BrieflnstrumentalActivities of Daily Living Measure, 33 J. AM. GERIATRICSSOC'Y698 (1985); J. Kuriansky et al., The Assessment of Self-Care Capacity in Geriatric Psychiatric Patients by Objective and Subjective Methods, 32 J. CLINICALPSYCHOL.95 (1976).
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lack of generally accepted, reliable, valid, and simple assessment techniques. ''9 A path-breaking article in the American Journal of Psychiatry almost two decades ago referred to the quest for an objective, uniformly dependable, consistently accurate, and easily administered tool for measuring the mental decision-making capacity of individuals regarding medical choices as a search for "the Holy Grail. ''1° Despite this perceptive admonition, some social scientists and mental health professionals have vigorously pursued, and continue to pursue, this project. Through their work on the MacArthur Network on Mental Health and the Law's Treatment Competence Study, psychiatrist Paul Appelbaum and psychologist Thomas Grisso, in collaboration with several of their colleagues, recently have made important contributions in this endeavor. 11 In significant ways, the Competence Study has been fruitful. Most importantly, the MacArthur group's findings may help clinicians to better evaluate and characterize different types of decision-making impairments. 12This improvement should assist clinicians both to devise more effective therapeutic strategies and to explain to courts how psychiatric and psychological findings and opinions bear on the resolution of legal issues. 13 Grisso and Appelbaum warn that the MacArthur group's "experimental measures" of decisional capacity "should not be interpreted as though they provide determinations of legal incompetence to consent to treatment. ''14They argue that (a) because legal standards of capacity vary across jurisdictions, a single national capacimeter "would lack meaning"; ~5 and (b) the numerical scores that they used to define "impaired" performance would not be appropriate for many situations because they would not reflect an individual case's "contextual factors," such as the complexity and consequences of a disorder or proposed treatment, that might favor a stricter or more lenient criterion for competence. ~6
9Rachel A. Pruchno et ai., Competence of Long-Term Care Residents to Participate in Decisions About Their Medical Care:A Brief,, Objective Assessment, 35 GEROICrOLOGlST 622, 624 (1995). l°l-oren H. Roth et al., Tests of Competency to Consent to Treatment, 134 AM. J. PSVOnATRY279 (1977). 11Paul S. Appelbaum & Thomas Grisso, The MacArthur Treatment Competence Study. I: Mental Illness and Competence to Consent to Treatment, 19 LAW & HUMA~ BEHAV. 105 (1995) (hereinafter "MTCS-I"); Thomas Grisso et al., The MacArthur Treatment Competence Study. II: Measures of Abilities Related to Competence to Consent to Treatment, 19 LAW & HUMAN BErtAV. 127 (1995) (hereinafter "MTCS-II"); Thomas Grisso & Paul S. Appelbaum, The MacArthur Treatment Competence Study. 1II: Abilities of Patients to Consent to Psychiatric and Medical Treatments, 19 LAW & HUMA~ BEHAV. 149 (1995) (hereinafter "MTCS-III"); Thomas Grisso & Paul S. Appelbaum, A Comparison of Standards for Assessing Patients' Capacities to Make Treatment Decisions, 152 AM. J. PSYCHIATRY 1033 (1995) (hereinafter "MTCS-IV"). In the remainder of this article we refer to the research team involved in the Competency Study as the "MacArthur group." lZRecognizing that jurisdictions differ in their definitions of decisional capacity, MTCS-I, supra note 11, at 108, the MacArthur group developed three instruments "to assess the abilities associated with Jail] four legal standards for competence to consent to treatment." MTCS-IV, supra note 11, at 1034. The instruments assess understanding of treatment disclosure (score range = 0-10), reasoning about treatment (score range -- 0-14), and appreciation or perception of one's disorder (subtest score range = 0-6). The reasoning instrument contains an item for assessing ability to express a choice (score range = 0-2). ld. 13In addition, because definitions of decisional capacity vary across jurisdictions, these instruments might help mental health professionals articulate findings related to a jurisdiction's specific definition of decisional capacity. 14MTCS-III, supra note 11, at 170. 15Id. 16Id. We discuss this problem in more detail infra, at notes 90-93 and accompanying text.
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Although we ultimately agree with the MacArthur group's warnings against treating their measures as a capacimeter, we do not feel their arguments fully address the issue. Concerning their first point, legal decision makers might simply use results from the MacArthur subscale 17 that fit their jurisdiction's definition of capacity. In response to the second, legal decision makers might adopt a narrow range of subscale scores within which an individualized decision about capacity could be made taking into account relevant contextual issues. Alternatively, they might regard the MacArthur group's statistical definition of decisional impairment as a scientifically supported basis for capacity judgments that is preferable to relying on arbitrary human inclinations. 18 If the MacArthur group's claim is correct--that it has developed capacity measures that "provide meaningful representations of the decisional abilities that courts have considered when making competence determinations"~9--it seems reasonable to consider the potential usefulness of their measures in making clinical and legal decisions. We devote this article to a detailed explanation of why the MacArthur group's product has limited practical value as a tool for measuring or ranking 2° decisional capacity. Besides legitimate criticisms that might be directed toward specific measurement instruments or processes, there are serious generic, inherent problems connected with any attempt to construct a universally acceptable version of what we have called a capacimeter. In this article, we identify and analyze these problems and suggest that the continuing search for the elusive "Holy Grail" test of capacity proceed only with great caution, if at all. We conclude by urging that, instead of making more attempts to develop, perfect, or seek acceptance of an ultimate assessment instrument, investigators and scholars should devote their finite energies toward the development and dissemination of appropriate clinical practice parameters in this area. Quest for the " H o l y Grail"
Evolution of Substantive Statutory Standards Assessments of medical decision-making capacity usually are guided by legal standards that have evolved slowly on a state-by-state, case-by-case basis and which today ordinarily are codified in a jurisdiction's guardianship statutes. 2t During the 17See supra note 12. lSThis specific idea is discussed infra, notes 95-96 and accompanying text. 19MTCS-III, supra note 11, at 170. 2°At various points in this article, we refer to instruments that "measure" decisional capacity, as do the MacArthur group. See MTCS-IV, supra note 11, at 1034. Defined as "to compute or ascertain the extent, quantity, dimensions or capacity of, by a certain rule or standard," WEBSTER'S NEW TWENTIETH CENTURY DICTIONARY OF THE ENGLISH LANGUAGE UNABRIDGED 1047 (1951), the verb "to measure" often connotes assessments of interval variables (e.g., temperature) or ratio variables (e.g., length or weight). However, a person who achieves a score of 8 on one of the MacArthur capacity subscales does not have "more" or "twice as much" capacity as does someone who scores 4; the scores merely suggest that the former person ranks higher than the latter. In the present context, the term capacity--although it suggests quantity--is an ordinal variable, that is, a property that simply allows for ordered ranking of members of a group. Many psychologically relevant variables (e.g., I.Q. scores) are ordinal. Like the MacArthur instruments, a capacimeter, as we envision it, would not quantify some property of individuals, but would merely rank members' relative abilities. For a useful discussion of variables and their classification, see GEORGE F. FERGUSON, STATISTICALANALYSISIN PSYCHOLOGYAND EDUCATION 11-14 (5th ed. 1981). 21This evolution is carefully traced in Sabatino, supra note 4. See also Marshall B. Kapp, Evaluating
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past quarter century, virtually every state legislature has substantially amended its guardianship statutes. 22 The changes enacted provide a more extensive array of procedural protections for potential wards than earlier laws required. They also provide a more explicit and precise set of substantive standards for deciding when the state'sparens patriae authority should be invoked to impose a surrogate decision maker on a person who cannot make autonomous choices personally. In addition, these legislative standards reflect a clear movement away from equating incapacity with a particular diagnostic or categorical label that might be attached to an individual (e.g., old age, mental illness). Instead, the standards direct attention toward discerning the extent, if any, to which one's diagnosis or condition impairs one's ability to deal rationally with the specific decision confronting him. This statutory trend toward setting out explicit, function-centered, substantive standards for use in capacity assessments is well exemplified in the recently enacted California Due Process in Competence Determination Act. 23 Practically speaking, courts only rarely become involved in formal adjudications of decisional competence. The vast majority of working assessments of capacity to engage in medical decision making are conducted informally by health professionals, and these assessments have enormous practical consequences for the treatment of the individual patients who are evaluated. 24 Statutory definitions of decision-making capacity form the intellectual framework within which most informal clinical assessments occur, 25 even though court supervision is an infrequent event. Statutory standards for determining capacity must recognize (at least implicitly) the potential risks of categorizing too few or too many persons as decisionally incompetent. In general, current standards tend to favor individual autonomy and to limit state intervention to the least restrictive or intrusive alternatives feasible, 26 reflecting Americans' traditional reluctance to let the state cast a benevolent helping net so widely that it prematurely or unnecessarily interferes with decision-making
Decisionmaking Capacity in the Elderly: A Review of Recent Literature, in PROTECTINGJUDGMENT-IMPAIRED ADULTS: ISSUES, INTERVENTIONSAND POLICIES 15-29 (Edward F. Dejowski ed., 1990). For the sake of simplicity, in this article the term guardianship is used to describe "a legal relationship, authorized by a state court (usually in the probate division), between a ward (the person whom a court has declared to be incompetent or incapacitated to make particular decisions) and a guardian (whom the court appoints as the surrogate decisionmaker for the ward)." MARSHALLB. KAPP, KEY WORDS IN ETHICS, LAW, & AGING: A GUIDE TO CONTEMPORARY USAGE 34--35 (1995). Terminology regarding this relationship varies among jurisdictions. See generally STEVEN J. Ar~DERER, DETERMINING COMPETENCY IN GUARDIANSHIPPROCEEDINGS (1990). 22See Penelope A. Hommel, Guardianship Reform in the 1980s: A Decade of Substantive and Procedural Change, in OLDER ADULTS' DECISION-MAKINGAND THE LAW 225-253 (Michael A. Smyer et al. eds., 1996). 23Act of October 13, 1995, ch. 842, 1995 Cal. Laws, effective January 1, 1996. This legislative tightening of substantive and procedural standards for the appointment of a decision-making surrogate (termed a conservator in California) was cosponsored by the California Medical Association and the California Bar Association and was supported by the California Judges Association. 24See MICHEL SILBERFELD & ARTHUR FISH, WHEN THE MIND FAILS: A GUIDE TO DEALING WITH INCOMPETENCY53-74 (1994). See generally, Marshall B. Kapp, EthicalAspects of Guardianship, 10 CLINICS GERIATRIC MED. 501 (1994). 25Cf. Marshall B. Kapp, Liability Issues and Assessment of Decisionmaking Capability in Nursing Home Patients, 89 AM. J. MED. 639 (1990). 26See, e.g., George J. Annas & Joan E. Densberger, Competence to Refuse Medical Treatment: Autonomy Versus Paternalism, 15 U. TOE. L. REV. 561 (1984).
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prerogatives of c o m p e t e n t adults. At the same time, few Americans today would wish to nihilistically abandon seriously impaired individuals to a meaningless theoretical autonomy and to the potential harm they may suffer because of neglect. 27 The tension between overinclusion and underinclusion in the assessment of decisionmaking capacity, and the professional frustration that such tension fosters, 28 help to explain the potential attractiveness of a statistically validated assessment instrument as a substitute for fallible h u m a n judgment. Appeal of a Capacimeter
The fear of overinclusion and underinclusion of individuals undergoing evaluation in actual practice also helps to explain the widespread dissatisfaction with the status quo of medical decision-making capacity assessment. To understand this dissatisfaction, it is helpful to keep in mind the reasons that formal capacity assessments are initiated and conducted in the first place. Formal assessments almost invariably take place only when a patient refuses to accede to a medical recommendation. 29 The treating clinician may have a sincere feeling of uncertainty and discomfort about the patient's pertinent cognitive and emotional abilities and requests the opinion of other professionals who are presumed to have particular expertise and experience in capacity assessment. Much of the time, though, concern about (or at least awareness of) potential legal implications lies behind the request for a capacity assessment. 3° The clinician may wish to respect the patient's seemingly valid decision to refuse a particular form of treatment but is worried that a family m e m b e r or other patient advocate might later fault the clinician for withholding or withdrawing that intervention. In such a case, a consultation may bolster documentation in support of respecting the patient's choice. Conversely, the clinician who demurs to a patient's refusal of r e c o m m e n d e d treatment may call in consultants to try to convince the patient to reconsider and consent, or failing that, to support a request for judicial appointment of a surrogate decision maker. 31 Subjectivity, idiosyncracy, and lack of sufficient reliability among capacity evaluators all combine to limit the accuracy and fairness of capacity assessments, 27But see Steven J. Schwartz, Abolishing Competency as a Construction of Difference: A Radical Proposal to Promote the Equality of Persons With Disabilities, 47 U. MIAMIL. REV.867 (1993) (suggesting
that the legal system abandon its preoccupation with the rational person as the sole model of legal decision making and substitute instead a more flexible appreciation of personhood that accommodates degrees of cognitive impairments and incapacities. Intellectual capacitywould be relevant only where the individual's own physical expression of choice or action is not possible and where the activityinvolvesan action initiated by a third party against the individual with a disability in a manner that invades or impairs fundamental interests). 28See, e.g., Daniel C. Marson et al., Assessing the Competency of Patients With Alzheimer's Disease Under DifferentLegal Standards, 52 ARCH.NEUROL.949, 951 (1995) ("While concerned about maintaining the autonomy and well-being of its aging citizens, society is equally interested in protecting them (and others) from risks and dangers caused by their declining capacities.") 29GEORGE B. MELTON ET AL., PSYCHOLOGICALEVALUATIONSFOR THE COURTS: m HANDBOOKFOR
MENTALHEALTHPROFESSIONALSAND LAWYERS(1987). See also Evelyn M. Howanitz & Jeffrey B. Freedman, Reasonsfor Refusal of Medical Treatment by Patients Seen by a Consultation-Liaison Service, 43 HOSP. & COMMUNITYPSYCHIATRY278
(1992).
3°See Marshall B. Kapp, supra note 25. 31See Marshall B. Kapp, Assessment of Competence, in THE PRACTICALHANDBOOgOF CLINICAL GERONTOLOGY(Laura L Carstensen et al. eds., forthcoming 1996).
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both in the process of conducting t h e m and in gauging their results. 32 Many current assessment tools 33 are inefficient and cumbersome to administer. However, the frequently demonstrated superiority of simple assessment scales ("actuarial judgm e n t " ) over supposedly more sophisticated clinical judgments 34 is a strong prima facie reason for hoping that a standardized capacity instrument would improve professional and judicial decision making. The idea of a capacimeter therefore resonates powerfully with relevant scientific findings and with m o d e r n society's sometimes uncritical faith that h u m a n problems can be mastered through quantification. A measure that produced a definitive, objective, numerical readout addressing the ultimate capacity question in any treatment setting would carry understandable (even if ultimately illusory) appeal. Nursing h o m e providers routinely deal with a significant rate of dementia in their patient 35 populations 36 and a regulatory climate that strongly emphasizes patient autonomy and clear delineation of decision-making authority. 37 They therefore may be especially t e m p t e d to imbue "objective," number-producing capacity instruments with the power to resolve nettlesome policy problems. According to one set of authors: From a policy perspective, what is needed to enable nursing homes to fulfill the requirements of OBRA 87 [the Nursing Home Quality Reform Act] and OBRA 90 [amendments to the Nursing Home Quality Reform Act] is a simple, reliable, and valid method of assessing the competence of older adults to be involved in medical decision-making.38 Perceived Necessity as the Mother of Invention: Specific Instruments
The MacArthur group's assessment instrument is hardly the first effort at developing a method for numerically scaling capacity. In response to the desire for "a simple, reliable, and valid" assessment method, previous investigators have sought the Holy-Grail-as-universally-accepted-capacimeter envisioned in a series of wellintentioned efforts. The following are among the better known capacity assessment 32See Daniel C. Marson et al., Determining the Competency of Alzheimer Patients to Consent to Treatment and Research, 8 (Supp. 4) ALZHEIMERDISEASE& ASSOC.DISORDERS5, 6 (1994); Lawrence J. Markson et HI.,PhysicianAssessment of Patient Competence, 42 J. AM. GERIATRICSSOC'Y1074 (1994). 33Seeinfra, notes 39-57 and accompanyingtext. 34See, e.g., Robyn M. Dawes, Clinical Versus Actuarial Judgment, 243 SCIENCE1668 (1989) (simple
formulae generally outperform clinicians'judgments in a variety of assessments). 35Because this article focuses on medical decision making, the term patient is used here even though many prefer to refer to nursing home consumers as residents. Our use of patient in this context does not necessarily imply endorsement of the medical model in nursing homes. For a solid critique of the medical model in the nursing home environment, see (Laurence B. McCullough & Nancy L. Wilson eds., 1995). LONG-TERM CARE DECISIONS: ETHICAL AND CONCEPTUALDIMENSIONS.
36See Paige E. Goodwin et al., Decision-Making Incapacity Among Nursing Home Residents: Results from the 1987NMES Survey, 13 BEHAV.ScI.& L. 405 (1995); TAMARAI. LAIR& D. LEFKOWlTZ,MENTAL HEALTH AND FUNCTIONALSTATUS OF RESIDENTS OF NURSING AND PERSONAL CARE HOMES ( D H H S Pub.
No. PHS 90-3470, 1990). 37Cf. Marshall B. Kapp, Medical Decisionmaking for Older Adults in Institutional Settings: Is Beneficence Dead in an Age of Risk Management? 11 ISSUESL. & MED. 29 (1995) (regulatory emphasis on patient autonomy and clear delineation of legal decision-makingauthority may have the paradoxicaleffect of limiting autonomy by, for example, encouraging nursing homes to initiate more formal guardianship proceedings for their patients). 38Pruchno et al., supra note 9, at 624.
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instruments that are currently available: • the Mini-Mental State Examination (MMSE); 39 • the MacArthur group's own previous forays into this wilderness, namely, the Understanding of Treatment Disclosure 4° and Thinking Rationally About Treatment 41 measures; • Edelstein's Hopemont Capacity Assessment Inventory; 42 • the Neurobehavioral Cognitive Status Examination; 43 • the Dementia Rating Scale; 44 the Wechsler Memory Scale--Revised Logical Memory test; 45 • the Wechsler Adult Intelligence Scale--Revised Comprehension and Similarities t e s t ; 46
• • • •
the the the the
Geriatric Depression Scale; 47 Center for Epidemiological Studies Depression Scale; 48 Short Psychiatric Evaluation Schedule; 49 Global Deterioration Scale; 5°
39Tom N. Tombaugh & Nancy J. Mclntyre, The Mini-Mental State Examination: A Comprehensive Review, 40 J. AM. GERIATRICS SOC'Y 922 (1992); J. Robert Cockrell & Marshal F. Folstein, Mini-Mental State Examination (MMSE), 24 PSYCHOPHARMACOL. BULL. 689 (1988); Marshal F. Folstein et al., Mini-Mental State: A Practical Method for Grading the Cognitive State of Patients for the Clinician, 12 J. PSYCHIATRIC RES. 189 (1975) (presenting a brief cognitive screening battery that assesses global cognitive ability within the domains of orientation, immediate and delayed recall for words, attention and concentration, language, and praxis). 40THOMAS GRISSO & PAUL S. APPELBAUM, MANUALFOR UNDERSTANDINGOF TREATMENT DISCLOSURE (1992); Thomas Grisso & Paul S. Appelbaum, Mentally I11 and Non-Mentally Ill Patients' Ability to Understand Informed Consent Disclosures for Medication, 15 LAW & HUMAN BEHAV. 377 (1991) (regarding a measure for an individual's understanding of information for which disclosure to the patient is required in order to obtain informed consent for treatments involving medications). 41THOMASGRISSO (~ PAUL S. APPELBAUM,MANUALFOR THINKING RATIONALLYABOUTTREATMENT (1993). 42Barry A. Edelstein et al., Assessment of Capacity to Make Financial and Medical Decisions (unpublished paper presented at the 101st Annual Meeting of the American Psychological Association, Toronto, Canada, August 1993) (copy on file with authors) (examining an individual's understanding of the concepts of benefit, risk, and choice). 43Freedman et al., Assessment of Competency: The Role of Neurobehavioral Deficits, 115 ANNALS INTERN. MED. 203 (1991); Ralph J. Kiernan et al., The Neurobehavioral Cognitive Status Examination: A Brief But Quantitative Approach to Cognitive Assessment, 107 ANNALS INTERN. MED. 481 (1987); Lee H. Schwamm et al., The Neurobehavioral Cognitive Status Examination: Comparison With the Cognitive Capacity Screening Examination and the Mini-Mental State Examination in a Neurosurgical Population, 107 ANNALS INTERN. MED. 486 (1987). 44Steven Mattis, Mental Status Examination for Organic Mental Syndrome in the Elderly Patient, in GERIATRIC PSYCHIATRY79 (Leopold Bellak & Toksoz B. Karasu eds., 1976). 4SDavid Wechsler, WECHSLER MEMORY SCALE--REVISED (1987). 46David Wechsler, WECHSLERADULTINTELLIGENCESCALE--REVISED (1981); Spruill, WechslerAdult Intelligence Scale--Revised, in TEST CRITIQUES (Daniel J. Keyser & Richard C. Sweetland eds., 1984). 47Brink et al., Screening Tests for Geriatric Depression, 1 CLINICAL GERONTOLOGIST 37 (1982); Yesavage, The Use of Self-Rating Depression Scales in the Elderly, in HANDBOOK FOR CLINICAL MEMORY ASSESSMENTOF OLDER ADULTS213 (Leonard W. Poon et al. eds., 1986). 4SRadloff & Teri, Use of the Center for Epidemiological Studies Depression Scale With Older Adults, 5 CLINICAL GERONTOLOGIST 119 (1986). 49Eric Pfeiffer, A Short Psychiatric Evaluation Scale: A New 15-Item Monotonic Scale Indicative of Functional Psychiatric Disorder, in BRA1N FUNCTION IN OLD AGE 228 (F. Hoffmeister & C. Muller eds., 1979). S°Barry Reisberg, The Brief Cognitive Rating Scale and Global Deterioration Scale, in ASSESSMENTIN
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the Alzheimer's Disease Assessment Scale; 51 the Brief Cognitive Rating Score; 52 the Cambridge Mental Disorders of the Elderly Examination; 53 the Dementia of the Alzheimer Type Inventory; 54 the Dementia Diagnostic Screening Questionnaire; 55 the Mental Status Questionnaire; 56 and the American Association of Retired Persons' recently devised Executive Cognitive Function measure (ECF). 57
In their competence study, the MacArthur group noted that these currently available decisional capacity assessment instruments vary greatly, and they suggested that their assessment tool may help to eliminate that variability. 58 An extensive analysis of each of the many instruments developed over more than the past 20 years is beyond the scope of this article. 59 However, the preceding paragraph's partial enumeration of these instruments strikingly illustrates the prodigious amount of effort and resources that have been expended to date by crusaders for the Holy Grail. Problems in the Quest for the Holy Grail The capacity assessment instruments already available would appear to comprise a rich methodological cornucopia for those who conduct evaluations and for the clinical and legal consumers of those evaluations. 6° It is paradoxical indeed, therefore, that these capacimeter candidates offer both too much and too little to satisfactorily accomplish their intended task. GERIATRIC PSYCHOPHARMACOLOGY 19 (Thomas Crook et al. eds., 1983); Barry Reisberg et al., The Global Deterioration Scalefor Assessment of Primary Degenerative Dementia, 139 AM. J. PSYCHIATRY 1136 (1982) (a clinician rating scale indexing the degree of cognitive decline of persons with dementia). 51Richard C. Mohs, ADMINISTRATIVE AND SCORING MANUAL FOR THE ALZHEIMER'S DISEASE ASSESSMENT SCALE (1994) (presenting a brief cognitive screening battery developed at Mount Sinai School of Medicine assessing the domains of word list immediate and delayed recall, word list recognition, verbal comprehension, confrontation naming, constructional praxis, ideational praxis, and incidental memory). SZBarry Reisberg et al., The Brief Cognitive Rating Scale (BCRS): Findings in Primary Degenerative Dementia (PDD), 19 PSYCHOPHARMACOL.BULL. 47 (1983). S3M. Ruth et al., CAMDEX: A Standardized Instrumentfor the Diagnosis of Mental Disorders in the Elderly With SpecialReference to the Early Detection of Dementia, 149 BRIT. J. PSYCHIATRY698 (1986). S4Jeffrey L. Cummings & D. Frank Benson, Dementia of theAlzheimer Type:An Inventory of Diagnostic ClinicalFeatures, 34 J. AMER. GERIATRICSSOC'Y 12 (1986). SSRobert L. Rogers & John S. Meyer, Computerized History and Self-Assessment Questionnairefor Diagnostic ScreeningAmong Patients With Dementia, 36 J. AM. GERIATRICSSOC'Y 13 (1988). 56Kahn et al., Brief Objective Measuresfor the Determination of Mental Status in the Aged, 117 AM. J. PSYCHIATRY326 (1960). 57Barry S. Fogel et al., COGNITIVE DYSFUNCTION AND THE NEED FOR LONG-TERM CARE: IMPLICATIONS FOR PUBLIC POLICY (1994) (defining ECF as "the cognitive requirement for goal-directed activity," at 4. Its creators believe it can be used to predict an individual's need for formal long term care services). 5SMTCS-I, supra note 11, at 112. 59For an excellent overview of the state of the art circa the mid-1980s, see Thomas Grisso, EVALUATINGCOMPETENCIES:FORENSICASSESSMENTSAND INSTRUMENTS(1986). 6°For an enthusiastic endorsement of the value of neuropsychological studies of functional capacity and the confidence that they should engender within the legal system, see, e.g., Daniel C. Marson et al.,
Neuropsychologic Predictorsof Competency in Alzheimer's Disease Usinga Rational Reasons Legal Standard, 52 ARCH. NEUROL. 955 (1995).
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A variety of criticisms have been directed toward specific proposed tests of capacity. The widely used MMSE, for instance, has been found in several studies to be less than a sensitive indicator of cognitive abilities relating to decision making.61 Slobogin attacks the scale proposed by the MacArthur group as too readily allowing the examiner's personal values to be imposed on the patient, with consequent loss of test validity in terms of the competency evaluation.62 Beyond test-specific problems are the broader questions and objections based on inherent weaknesses in the capacimeter development enterprise. 63These objections could be applied in large part to the capacity assessment technique described by the MacArthur group. 64
Inevitability of Clinical Judgment Even if a single assessment instrument were to gain universal acceptance, expert clinical judgment exercised by individual (i.e., different) professionals would control the selection of patients to undergo formal assessment. Conducting a formal capacity assessment for every person at every juncture when there is a requirement for informed consent or refusal is neither a realistic nor a desirable alternative. Hence, broad dissemination of a capacimeter would make identification and targeting of appropriate candidates, if anything, a more important first step in the capacity assessment process than it is already. Fallible clinical judgment--along with personal variations, biases, and idiosyncrasies--would continue to play a key role in the choosing of patients to be evaluated, even if evaluators used actuarial capacimeters in their formal assessment process.
Varying Definitions of Capacity Any measurement tool at best produces results only as accurate and reliable as is the delineation of the phenomenon that it is supposed to measure. 65 Put differently, it is impossible to properly measure X without clearly defining X. This logical limitation has several pertinent ramifications. One is that precise legal definitions of mental competence--the thing to be evaluated--remain a matter of state statutory and common law, and these definitions and their interpretations still vary considerably among jurisdictions.66 As long as this situation persists, a nationally applicable capacimeter would require some degree (perhaps a lot) of modification by particular evaluators within each respective state. 67 61Edelstein et al., supra note 43; L. Jaime Fitten & Martha S. Waite, Impact of Medical Hospitalization on Treatment Decision-Making Capacity in the Elderly, 150 ARCH. INTERN. MED. 1717 (1990) (MMSE scores miss up to one-third of cognitive impairments presented by persons being evaluated); Richard I. Naugle & Katherine Kawczak, Limitations of the Mini-Mental State Examination, 56 CLEVELANDCLINIC J. MED. 277 (1989). 62Christopher Slobogin, "'Appreciation" as a Measure of Competency: Some Thoughts About the MacArthur Group's Approach, 2 PSYCHOL. PUB. POL'Y, & L. 18-30 (1996). 63See generally ROSALIE A. KANE & CHERYL D. KING, DECIDING WHETHER THE CLIENT CAN DECIDE: ASSESSMENTOF DECISION-MAKINGCAPABILITY 17-18 (1990). 64MTCS-II, supra note 11. 65See, e.g., BECKY C. WHITE, COMPETENCE TO CONSENT 186 (1994) (urging that development of a valid, reliable test for capacity is critical, but recognizing that first there must be consensus on what it is that is being evaluated, i.e., on how we precisely define capacity). 66See Sabatino, supra note 4. 67The instruments used by the MacArthur group are at least partially immune to this criticism,
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Need for Decision-Specific Assessment Another implication of the limiting relationship between definitions of capacity and the construction of measuring instruments is the national legal movement to recognize varying complexities among different kinds of medical choices and to require that capacity be determined on a decision-specific basis. This paradigm shift is reflected in the proliferation of state statutes authorizing courts to appoint guardians with strictly limited or partial, rather than total or plenary, powers to supplant the ward's decision-making prerogatives. 68A single, all-purpose assessment instrument---even one constructed with a jurisdiction's specific competence standard in mind----cannot conceivably measure capacity to make the myriad types of medical decisions that might confront a person in the future.
Choosing the Assessment Instrument A related issue involves the choice of assessment instruments. The instrument used in a particular clinical situation ought to reflect the specific aspects of mentation required for making a particular decision: orientation, memory, cognitive processing, self-awareness, reality testing, or neurologic functioning. 69 Were multiple minicapacimeters to become part of widespread practice, professional judgment--and, again, its unavoidable individuality and even idiosyncracies--would still be needed to select the particular instrument or combination of instruments used to evaluate a specific patient at a discrete point in time. An analogy between decision-making capacity assessment and the process of general health assessment may help clarify our point here. In ordinary clinical care, physicians do not apply a single "health-o-meter" that assigns a numerical "health score" to all patients. Instead, physicians ask questions, conduct focused physical examinations, and order a limited number of laboratory tests on the basis of their differential diagnosis of what is wrong with that particular patient. A similarly informed process should characterize capacity assessments. Evaluators cannot avoid making choices among potential areas of exploration based on their understanding of individual evaluees' potentially incapacitating conditions.
Changes Over Time For many patients, decisional capacity is an attribute that may wax and wane considerably over the course of time. Any capacity assessment instrument must be administered to the patient at a discrete moment. How can the static nature of the assessment process be reconciled with the dynamic, fluctuating nature of decisional capacity experienced by a substantial number of people? Must the instrument be repeated, and if so, how often, when, and under what circumstances? What interpretation should be reached if the capacimeter results differ from one
because they contain subscales that address the different extant standards for decisional capacity. See supra note 12. 68See Hommel, supra note 22; Penelope A. Hommel et al., Trends in Guardianship Reform: Implications for the Medical and Legal Professions, 18 LAW, MED. & HEALTH CARE 213 (1990). See also Winsor C. Schmidt, Assessing the Guardianship Reform of Limited Guardianship: Tailoring Guardianship, or Expandinglnappropriate Guardianships? 2 J. ETHICS, L., & AGISG (forthcoming 1996). 69F. M. Baker, Screening Tests for Cognitive Impairment, 40 HosP. & COMMUNITY PSYCHIATRY 339 (1989).
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administration to the next? Are the scores to be averaged, or should only the last score or highest score be counted? Should an additional evaluation be conducted as a "tie-breaker"?
Evaluator Effects At present, variation in personalities, training, and interpersonal styles and skills among the professionals conducting a capacity evaluation may affect the results for particular patients. The testing dynamics may cause persons being evaluated to feel more or less at ease versus tense in responding to questions, a factor that might exert an impact on current measures of cognitive performance. Proponents of developing a standard assessment suggest that adherence to strict protocols during testing can reduce or eliminate examiner-introduced biases and improve test accuracy.7° Whereas the possible validity of this argument must be acknowledged, there are no data today that support that speculation with regard to the specific context discussed here. For example, the MacArthur group's studies do not indicate whether their capacity instruments are more or less accurate than broad-based clinical evaluations or other tools that generate numerical ratings.
Evaluee Effects Persons being evaluated vary tremendously also, in terms of characteristics such as education, language, cultural background, and ethnicity. Performance on standardized tests of capacity may be affected by such factors in a way that reveals little or nothing about an individual's cognitive and emotional abilities to engage in a rational decision-making process once information is explained and choices are presented in a manner that is understandable and relevant to that person. At the same time, personalizing and individualizing the circumstances of capacity evaluation necessarily reintroduces elements of subjectivity that the standardized instrument would purport to eliminate.
Overvaluation by Decision Makers Ironically, a major--and quite legitimate--apprehension concerning development and dissemination of a seemingly objective, reliable, easy-to-administer, efficient, standardized capacity assessment instrument is that clinical and legal consumers of that product would be greatly tempted to latch onto and uniformly use the instrument much too quickly, automatically, and unreflectively. As noted earlier, the potential market for a capacimeter is huge. In contemplating the satisfaction of that market, including attorneys and the courts, one is (or ought to be) reminded of the colorful old adage about being careful what one wishes for because the wish might come true. There is a significant danger that a popularized capacimeter could easily result in clinicians' and legal officers' too readily elevating form over substance, attaching inordinate weight to tests, documents, and numbers while ignoring the wholeness of the persons about whom autonomy-dependent decisions must be made. A reasonable analogy might be drawn in this respect between the potential misuse of a capacimeter and the propensity of many courts in mental health-related litigation to rely reflexively on statements in the American Psychiatric Association's 7°Seegenerally Dawes et al., supra note 34, and Danny Wedding & David Faust, ClinicalJudgment and Decision Makingin Neuropsychology, 4 ARCmVESOF CLINICALNEUaOPSYCHOLOGY233 (1989).
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4th e d i t i o n of the Diagnostic and Statistical Manual o f Mental Disorders ( D S M - I V ) as v i r t u a l " b l a c k l e t t e r " law. This legal u s u r p a t i o n occurs despite the clear i n t e n t of the psychiatric p r o f e s s i o n t h a t the D S M s b e u s e d to guide clinicians in providing diagnostic a n d t r e a t m e n t services to patients. 71 Similarly, school systems f r e q u e n t l y e q u a t e a s t u d e n t ' s n u m e r i c a l score o n s t a n d a r d i z e d w r i t t e n tests with that s t u d e n t ' s intelligence, I m p o r t a n t e d u c a t i o n a l decisions are b a s e d arbitrarily o n that e q u a t i o n , in c o n t r a d i c t i o n to the i n t e n t of the test creators. 72
L e s s o n s F r o m the I n f o r m e d C o n s e n t Process T h e way in which the i n f o r m a t i o n a l facet of i n f o r m e d c o n s e n t is c o n d u c t e d by m a n y m e d i c a l p r a c t i t i o n e r s now, with s i g n a t u r e s o n w r i t t e n forms exalted over actual discussion with patients, 73 r e p r e s e n t s a good e x a m p l e of b a d practice that should n o t b e e m u l a t e d in the capacity a s s e s s m e n t context. Patients, clinicians, legal particip a n t s , a n d society b e n e f i t little if the q u e s t for the H o l y - G r a i l - a s - c a p a c i m e t e r results in clinical b e h a v i o r w h e r e the r e c o r d i n g of n u m b e r s o n a w r i t t e n form b e c o m e s a s u b s t i t u t e for careful o b s e r v a t i o n of, a n d m e a n i n g f u l discussion with, patients.
Questions A b o u t C o n s e q u e n c e s G e n e r a l anxiety a b o u t p r o b a b l e misuses of c a p a c i m e t e r r e a d o u t s overlies a series of m o r e d e t a i l e d q u e s t i o n s a b o u t c o n s e q u e n c e s : • W h a t are the p o t e n t i a l practice implications of having easily available capacity "scores" for individuals o b t a i n e d t h r o u g h the a d m i n i s t r a t i o n of p o r t a b l e capacimeter instruments?
71The purpose of DSM-III is to provide clear descriptions of diagnostic categories in order to enable clinicians and investigators to diagnose, communicate about, study, and treat various mental disorders. The use of this manual for non-clinical purposes, such as determination of legal responsibility, competency or insanity, or justification for third-party payment, must be critically examined in each instance within the appropriate institutional context. American Psychiatric Association, DIAGNOSTICAND STATISTICALMANUALOF MENTAL DISORDERS (DSM-III) 12 (3d ed., 1980). Subsequent DSM editions contain a "Cautionary Statement" printed on a separate page restating the clinical purpose outlined above; the statement also mentions that inclusion in the manual does not imply that a condition meets legal criteria for a mental disorder and that "clinical and scientific considerations involved in categorization of these conditions as mental disorders may not be wholly relevant to legal judgments." American Psychiatric Association, DIAGNOSTICAND STATISTICAL MANUALOF MENTALDISORDERSxxix (3d ed. revised, DSM-III-R 1987); American Psychiatric Association, DIAGNOSTICANDSTATISTICALMANUALOFMENTALDISORDERS(4th ed., DSM-IE, 1994). An attorney working in our locale has reported to us another example of misuse of the DSMs. Dayton-area administrative law judges appear to apply great weight to DSM-IV's Global Assessment of Functioning(GAF) Scale, id. at 32, when they review Social Security disabilityclaims. If the GAF is above 50--implying moderate, but not severe, psychologicalimpairment--thejudges "in many cases seem t o . . . take this to mean.., that this person can work" and deny benefits, despite other nonquantitative evidence of disability (Gary Blumenthal, personal communication, March 7, 1996). For additional discussion of courts' misapplication of the DSMs, see Daniel W. Shuman, The Diagnostic and StatisticalManual of Mental Disordersin the Courts, 17 BULL.AM. ACAD.PSYCHIATRYL. 25 (1989). 72Vi/e recognize that these examples are only anecdotal and that we and others could adduce counterexamples in which numerical data are not misused by courts. Also, the potential for misuse or abuse is not a reason to keep information awayfrom legal decision makers. Our point, however, is that the allure of simple tests with clear numerical outcomes can be false. Numerical measures can improve decision making, but they can just as easily become vehicles for poor decision making. 73SeeJAY KATZ,THE SILENTWORLDOFDOCTORANDPATIENT(1984).
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• W i l l t h e availability o f s e e m i n g l y objective scores e n c o u r a g e h e a l t h c a r e p r o f e s s i o n als to u s e legal p r o c e d u r e s - - f o r e x a m p l e , initiating o r instigating g u a r d i a n s h i p p e t i t i o n s - - m o r e o r less o f t e n t h a n t h e y d o c u r r e n t l y ? Specifically, will t h e r e b e a rise in " d e f e n s i v e " g u a r d i a n s h i p a p p l i c a t i o n s , i n i t i a t e d a f t e r p a t i e n t s score b e l o w s o m e a r b i t r a r y cutoff m a r k b u t arising o u t o f f e a r t h a t liability m a y a t t a c h for t r e a t i n g such p a t i e n t s w i t h o u t p r i o r j u d i c i a l i m p r i m a t u r ? TM • I n t h e c o n d u c t o f g u a r d i a n s h i p p r o c e e d i n g s , w h a t e v i d e n t i a r y weight will o r s h o u l d c o u r t s assign to c a p a c i m e t e r r e s u l t s - - c o n c l u s i v e , p r e s u m p t i v e , o r s o m e l o w e r degree of proof? • I n c i r c u m s t a n c e s in w h i c h g u a r d i a n s h i p is n o t sought, will h e a l t h p r o f e s s i o n a l s b e m o r e likely to t u r n quickly to f o r m a l 75 o r i n f o r m a l 76 p r o x i e s as d e c i s i o n m a k e r s b a s e d solely o r p r i m a r i l y o n low p a t i e n t c a p a c i m e t e r s c o r e s ? I n such cases, will t h e p a t i e n t ' s o w n e x p r e s s e d wishes b e d e e m e d i r r e l e v a n t a n d s u m m a r i l y i g n o r e d ? • W h a t will o c c u r w h e n a p a t i e n t " f a i l s " a c a p a c i m e t e r test b u t has no family o r f r i e n d s w h o a r e willing a n d a b l e to act as d e c i s i o n - m a k i n g p r o x i e s o n his b e h a l f ? 77 • W h a t a r e t h e p o s s i b l e p r a c t i c a l i m p l i c a t i o n s o f c a p a c i m e t e r scores on t h e f u n c t i o n i n g o f i n t e r d i s c i p l i n a r y h e a l t h c a r e t e a m s ? W o u l d all m e m b e r s o f t h e t e a m b e b o u n d b y t h e q u a n t i t a t i v e r e a d i n g ? I f not, w h o c o u l d d i s p u t e t h e results, a n d w h a t p r o c e s s a n d s t a n d a r d s w o u l d b e u s e d to resolve d i s p u t e s a m o n g t e a m m e m b e r s ? H o w w o u l d this p a r t o f t h e d e c i s i o n - m a k i n g p r o c e s s b e d o c u m e n t e d in the patient's chart or elsewhere? Role of the Capacimeter Score Even the strongest proponents of a standardized capacimeterlike instrument r e a d i l y c o n c e d e t h a t clinical j u d g m e n t m u s t r e m a i n a vital p a r t o f t h e f u n c t i o n a l e v a l u a t i o n p r o c e s s a n d t h a t t h e s t a n d a r d i z e d i n s t r u m e n t s h o u l d not, in a n d o f itself, b e t r e a t e d as " t h e " s t a n d a r d o f p r a c t i c e in c a p a c i t y assessment. N e u r o p s y c h o l o g y r e s e a r c h e r s D a n i e l M a r s o n a n d colleagues, for e x a m p l e , state: We wish to emphasize, however, that our prototype instrument is intended to assist, but certainly not displace, the clinician. A single instrument and score can never take
74Cf. Zinermon v. Burch, 494 U.S. 113 (1990) (finding the state liable for allowing an incompetent patient to "voluntarily" admit himself to state mental institution); Marshall B. Kapp, supra note 37, at 32-34 (nursing home legislation emphasizing patient autonomy and clear legal authorization for decision-making leading to more guardianship petitions filed). 75Formalproxy decision makers refers to persons named as agents or attorneys-in-fact in a durable power of attorney executed previously by the patient; see LAWRENCEA. FROLIK& MELISSAC. BROWN, ADVISINGTHE ELDERLY OR DISABLEDCLIENT 16-16--16-20 (1992), or to persons authorized by state "Family Consent" statutes to make decisions on behalf of an incapacitated patient in the absence of a durable power of attorney or guardianship order; see Jerry A. Menikoff et al., Beyond Advance Directives: Health Care Surrogate Laws, 327 NEW ENGLANDJOURNALOF MEDICINE1165 (1992). 76Byinforrnalproxies, we refer to the longstanding custom of health professionals turning to family members for treatment decisions about decisionally incapacitated patients, even when the relatives lack explicit legal authority conferred by a statute or specific judicial order. See, e.g., Elaine Krasik, The Role of the Family in Medical Decisionmaking for Incompetent Adult Patients, 48 U. PITt. L. REV. 539 (1987); Alexander M. Capron, Informed Consent to Catastrophic Disease and Research Treatment, 123 U. PA. L. REV. 340 (1974) (stating that the tradition of seeking consent and advice from family members is "so well known in society at large that any individual who finds the prospect particularly odious has ample warning to make other arrangements better suited to protecting his own ends or interests," at 425.) 77Cf. Marshall B. Kapp, Surrogate Decision Making for the Unbefriended: Social and Ethical Problem, Legal Solution? 1 J. ETHICS,L., & AGING83 (1995).
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account of the variety of medical, legal, ethical, and other factors that inform a competency decision. TM Pruchno and colleagues echo a similar caveat: . . . in cases where a [nursing home] resident falls in the gray area of competence according to the objective tests, the capacity to participate in decisions about medical care is more difficult to determine. This is when the expertise of a clinical psychologist is needed. 79 The developers of assessment instruments uniformly acknowledge that these tests work, at best, as screens that indicate the need for further inquiry, especially when they have b e e n designed for patient m a n a g e m e n t purposes rather than for use in resolving forensic questions that turn on the patient's functional abilities, a° As the designers of one recent quantitative screening test for competence have expressed it, "This test does not determine legal competency but rather is an aid to the clinician in forming an opinion about clinical competency. ''al Mistaken Background Assumptions Perhaps the most important inherent shortcoming of any particular instrument or combination of instruments purporting to rate or measure individuals' medical decision-making capacity is the assumption that such instruments detect a property that is either present or absent and that they yield binary (i.e., yes-no) answers about the presence of that property, a2 The psychological appeal of the capacimeter concept (similar to the appeal of submitting ambiguous or controversial matters to a court for formal adjudication) is that it promises to provide medical and legal users with definitive information: According to how one scores on the test, a patient either is or is not considered capable of making decisions. The capacimeter concept also suggests that assessing capacity is the critical function of persons who may be working with a cognitively impaired individual. T h e r e are three major problems with this way of thinking. Misconception o f the N a t u r e o f Capacity Capacity is not an all-or-nothing property of persons, even though courts often must make yes-no judgments about whether cognitively impaired individuals shall be allowed to exercise decisional capacity. The word capacity c a p t u r e s - - i n the way that competence does n o t - - t h e notion that individuals display levels of decision-making ability. Recently, logicians have coined the term fuzzy concepts to refer to features or properties that are not readily amenable to Aristotelian, e i t h e r - o r specifications, a3 For example, when grouping adults, we refer to some as "young" and others as not being 78Marson et al., supra note 28, at 953. 79pruchno et al., supra note 9, at 628. S°See, e.g., BeverlyN. Jones et al.,A New Bedside Testof Cognitionfor Patients With H1VInfection, 119 ANNALSINTERN.MED. 1001 (1993). SlJeffrey S. Janofsky et. al., The Hopkins CompetencyAssessment Test:A Brief Method for Evaluating Patients' Capacityto Give Informed Consent, 43 HosP. & COMMUNITYPSYCHIATRY132 (1992). S2We do not think the MacArthur group members are guilty of this error. Although they selected cutoff scores to dichotomouslycategorize individuals' decision making as "adequate" or "impaired," they appear to have done this for purposes of statistical analysisonly. S3Seegeneral~ BARTKOSKO,FUZZYTHINKING"THE NEWSCIENCEOFFUZZYLOGIC(1993).
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young and regard many individuals (perhaps those between ages 25 and 45) as being young in some respects or in some contexts, but not young in others. 84Similarly, many individuals with Alzheimer's dementia retain decisional capacity at the onset of their illness; after many years, they may lose it. In between, it might be most accurate to describe them as having decisional capacity in some respects and lacking capacity in others. Their functional abilities are not characterized appropriately by unambiguous, discrete, either-or categories. Assuming that cognitively impaired persons must fall into this or that bin may be the wrong way to conceptualize their limitations.
Misunderstanding of the Nature of Diagnostic Test Results Even were decisional capacity a binary, present-absent property of individuals, a capacimeter probably would not produce a yes-no answer about whether an individual had that property. A capacimeter would more likely function like a typical diagnostic test in medicine--for example, a blood glucose level for detecting diabetes--in which the results of affected and nonaffected individuals form overlapping distributions. To translate the blood glucose level into a clinically useful piece of information, the investigator must choose a particular cutoff---for example, fasting blood glucose above 140 mg/dlSS--that will serve as a demarcation point between those individuals who are deemed "test positive" and are treated as though they have diabetes and those who are deemed "test negative" and are treated as nondiabetic. The choice of a cutoff reflects the investigator's knowledge of how diabetic and nondiabetic populations' test results are distributed and the relative risks and benefits associated with detecting or not detecting patients with diabetes. How these considerations apply to a potential capacimeter is best explained through concrete numerical illustrations.86 Suppose we had a capacimeter that ranks patients' capacity on a scale of 0 (lowest) to 100 (highest). 87 To simplify discussion, we assume that what constitutes "capacity" is crisply defined and that individuals' true status can be ascertained reliably, so that our knowledge of the "truth" about i n d i v i d u a l s i t h a t is, whether they have decisional capacity--is beyond
S4Id., at 34-38 (discussing the concepts "adult," "young," "old,") and at 242-50 (discussing when life begins during pregnancy). 8SMANUALOF MEDICAL THERAPEUTICS, 26TH EDITION ("THE WASHINGTONMANUAL") (William C. Dunagan & Michael L. Ridner eds., 26th ed. 1989). S6This section summarizes several more extensive expositions, which for readers' sakes we shall not cite repeatedly. For more detailed discussions and explanations, see Eugene Somoza et al., Evaluation and Optimization of Diagnostic Tests Using Receiver Operating CharacteristicAnalysis and Information Theory, 24 INT. J. BIOMED. COMPUTING 153 (1989); Douglas Mossman, Assessing Predictions of IPtolence: Being Accurate About Accuracy, J. CONSULTING CLIN. PSYCHOL. 783 (1994) (hereinafter "Accurate Accuracy"); Douglas Mossman, Dangerous Decisions: An Essay on the Mathematics of Clinical Violence Prediction and Involuntary Hospitalization, 2 U. CHI. L. SCHOOL ROUNDTABLE95, 102-118 (1995); Douglas Mossman & Kathleen J. Hart, How Bad Is Civil Commitment? A Study of Attitudes, 21 BULL. AM. ACAD. PSYCHIATRY LAW 181, 183--85 (1993). 87The MacArthur group's instruments have fewer gradations. See supra note 12. The use of a more refined scale helps us discuss several mathematical considerations easily. However, the general points made here should apply fully to "coarser" decision scales. To simplify analysis, the 100-point scale is reduced to just eight points in Table 1 (discussed infra note 94 and accompanying text), resulting in a device that is comparable to that of the MacArthur group. For additional consideration of this issue, see Eugene Somoza & Douglas Mossman, Comparing and Optimizing Diagnostic Tests: An InformationTheoreticalApproach, 12 MEn. DEOS. MAKING179, 180 (1992) (discussing issues permitting the assumption of a continuous decision scale in instances where only a limited number of ratings have been rendered).
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r e a s o n a b l e d o u b t . T o find o u t how a c c u r a t e the c a p a c i m e t e r was, we first w o u l d apply it to two large g r o u p s of individuals similar to the p o p u l a t i o n o n w h o m the c a p a c i m e t e r u l t i m a t e l y w o u l d b e used to m a k e c o m p e t e n c e d e t e r m i n a t i o n s , o n e g r o u p c o m p r i s e d of p e r s o n s k n o w n to have capacity, the o t h e r c o m p r i s e d of p e r s o n s lacking it. T h e n the scores of the individuals in each g r o u p w o u l d b e c o m p a r e d . If the c a p a c i m e t e r h a d s o m e diagnostic value, the i n c o m p e t e n t individuals' scores w o u l d be lower t h a n the c o m p e t e n t individuals'. However, u n l e s s the c a p a c i m e t e r were a perfect i n s t r u m e n t , the g r o u p s ' scores w o u l d form o v e r l a p p i n g distributions. Let us i m a g i n e that the c a p a c i m e t e r was a p p l i e d to 2,000 persons, 1,000 of w h o m h a d a n d 1,000 of w h o m lacked capacity. 88 T h e i r scores t u r n o u t to be d i s t r i b u t e d as s h o w n in F i g u r e 1. T h e c a p a c i m e t e r t u r n s o u t to have an "effect size ''89 of 1.5; in o t h e r words, it is able to s e p a r a t e the d i s t r i b u t i o n s of the two groups by 1.5 s t a n d a r d deviations. This m a k e s it a fairly a c c u r a t e diagnostic test, with a d i s c r i m i n a t o r y p e r f o r m a n c e c o m p a r a b l e to radiologists' ability to detect 1-cm n o d u l e s o n a c o n v e n t i o n a l chest x-ray. 9° I n looking at F i g u r e 1, o n e sees that the c o m p e t e n t persons, whose d i s t r i b u t i o n peaks at 55, generally scored higher t h a n the i n c o m p e t e n t p e r s o n s whose d i s t r i b u t i o n peaks at 40. T h e c a p a c i m e t e r thus provides i n f o r m a t i o n helpful in distinguishing c o m p e t e n t from i n c o m p e t e n t patients, albeit i m p e r f e c t i n f o r m a t i o n b e c a u s e the scores of the c o m p e t e n t a n d i n c o m p e t e n t p a t i e n t s overlap.
SSOur discussion, supra notes 83-84 and accompanying text, has pointed out that capacity is a fuzzy concept. The notion that one could find and categorize 2,000 individuals this way---even if one were silly enough to want to---is highly artificial. We use the notion to simplify and illustrate some general points about the nature of diagnostic performance when the conditions to be distinguished are sharply delineated. The problems with weighting outcomes that we describe infra notes 91-95 and accompanying text are only heightened when the conditions are ambiguous. 89For a brief discussion of the meaning of effect size, see Throstur Bjorgvinsson& Paula Kerr, Use of a Common Language Effect Size Statistic, 152 AM. J. PSYCHIATRY151 (1995). Actually, the accuracy of the capacimeter should be characterized using the concepts associated with receiver operating characteristic (ROC) analysis,which is well established as the technique for describing detection systemswith nonbinary outcomes. John A. Swets, The Science of Choosing the Right Threshold in High-Stakes Diagnostics, 47 AM. PSYCH.522 (1992); Mark H. Zweig & Gregory Campbell, Receiver-Operating Characteristic (ROC) Plots: A Fundamental Evaluation Tool in ClinicalMedicine, 39 CLIrq.CHEMISTRY561 (1993). A proper introduction to ROC methods would involve a large digression and is not necessary for the present exposition. For readers familiar with ROC methods, however, we wish to point out an important connection between one indicator of effect size, Cohen's d, and the area under the ROC curve (AUC), a comprehensive ROC index of accuracy. Under the binormal assumption of ROC analysis (discussed in Mossman, "Accurate Accuracy," supra note 86, at 785), a detection system's accuracy can be characterized by two indices:A, the distance between the two populations measured in units of the standard deviation of the affected population; and B, the ratio of the standard deviations of the populations. AUC is then calculated from the relationship
AUC = qb
where qb (.) is the cumulative standard normal distribution function. One can show that if one assumes that B = 1, Cohen's d is equivalent to the ROC indexA. That is, d = A = ~ qb-1 (AUC). 9°See Cornelia M. Schaefer et al., Impact of Hard-Copy Size on Observer Performance in Digital Chest Radiography, 184 RADIOLOGY77, 79 (Figure 4) (1992) (accuracy of radiologists in detecting 0.7-1.5 cm paraffin nodules is characterized by AUC = 0.86). From the discussionsupra in note 89, we can show that this is equivalent to a detection method where d = 1.53.
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Figure 1. Frequency distributions of results from assessing 2,000 individuals with a capacimeter, half of whom had and half of whom lacked decisional competence. Both groups' distributions are normal (i.e., Gaussian), with standard deviations of 10 units. The mean of the incompetent group lies at 40 units, and the mean of the competent group at 55 units. The solid line describes the probability (measured along the left ordinate) that an individual is competent, given a particular capacimeter score.
Each capacimeter score is associated with a probability that the individual has capacity. This probability is represented by the solid line in Figure 1 and can be read off the right ordinate. Notice that between 40 and 55--the portion of the scale where many of the patients' scores lie---clinicians using the capacimeter would obtain probabilities that were far from certainty. To use the capacimeter as a decision-making instrument, clinicians would have to choose some threshold value along the scale on which to base decisions about who is deemed to have or lack capacity. Consider three possible cutoffs 49, 50, and 60---for the capacimeter. In each case, persons with scores falling above the threshold are test positive, and those falling below are test negative. As one moves the threshold higher (from 40 to 50 to 60), the kinds of correct identifications change: The fraction of actually competent persons correctly identified by the scale (the instrument's sensitivity or true positive rate) decreases, but the probability of correctly identifying an incompetent person (the instrument's specificity or true negative rate) increases. Similarly, the kinds of misidentifications change, too; as the threshold is moved higher, fewer actually incompetent patients are wrongly deemed to have capacity (false positives), but more actually competent patients are deemed incompetent (false negatives). Figure 1 summarizes the capacimeter's diagnostic performance at each potential
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threshold but does not tell us which score to choose. 91 To properly operationalize the capacimeter, one should try to balance sensitivity and specificity by choosing a threshold that reflects the risks and benefits of test outcomes. To do this, however, one would have to assign numerical values or utilities to false negatives, false positives, true negatives, and true positives. In theory, one could then find the capacimeter score that optimally balances the likelihoods and the values of test outcomes. 92 The problem here is that in most cases, it would be difficult even to enumerate the myriad consequences of an outcome, let alone assign probabilities and values to those consequences. Moreover, one would have to calculate a new cutoff for every instance in which the capacimeter was used, because each individual's circumstances--and therefore, the utility or value associated with deeming or not deeming someone to have capacity--would be different. Thus, the intrinsic features of the capacimeter--features it shares with any diagnostic instrument in which a decision threshold or cutoff must be chosen--prevent it from becoming a simple shortcut to a judgment about capacity. 93 One way to try to get around this would be to use the capacimeter as an ambiguity reducer. Suppose that the capacimeter's results are controlling only when the instrument indicates clearly and convincingly that a person either has or lacks capacity. To be more specific, suppose that the base rate of incapacity in the tested population was 50% (as is the case for the patients whose results are shown in Figure 1) and that the capacimeter determines a decision only when it indicates that the posttest probability of having capacity is above 80% or below 20%. How useful would the capacimeter be in this role? Not very. Table 1 shows what would happen were the capacimeter described by Figure 1 applied to 200 individuals, half of whom lacked capacity. 94 Fewer than half 91For a more complete discussion of this issue, see Eugene Somoza & Douglas Mossman, "Biological Markers" and PsychiatricDiagnosis: Risk-Benefit Balancing Using ROC Analysis, 29 BIOL. PSYCHIATRY811, 812-818 (1991). 92Instead of attempting to maximize utility, one might choose a decision threshold that maximizes information obtained from the detection instrument. See Douglas Mossman & Eugene Somoza,
Maximizing Diagnostic Information from the Dexamethasone Suppression Test: An Approach to Criterion Selection UsingReceiver Operating CharacteristicAnalysis, 46 ARCH. GEN. PSYCHIATRY653 (1989); Eugene Somoza & Douglas Mossman, Comparing and Optimizing Diagnostic Tests: An Information-Theoretical Approach, 12 MED. DEOS. MAKING179 (1992). If one prefers all outcomes equally, or is indifferent about the values and costs associated with various outcomes, information maximization would get around the problem discussed in the text. It is by no means clear, however, that one should be indifferent about outcomes. American law is heavily weighted toward maximizing autonomy even if this results in loss of one's bodily integrity. 93Grisso and Appelbaum recognize this limitation: Where to fix the threshold of competence or incompetence on each of these standards [i.e., on instruments measuring understanding, reasoning, and appreciation of disorder], however, is a question that is not answered by the data in this s t u d y . . . [t]here may be no single answer to the question of the degree of capacity that should be required for legal competence. The correct threshold may vary from case to case, depending on the clinical consequences of acceptance or refusal of treatment, as well as the risks and benefits of treatment alternatives, in individual cases. MTCS-IV, supra note 11, at 1037 (citation omitted). 94The values in Table 1 were calculated using the notion of the "stratum-specific likelihood ratio" (SSLR). The SSLR uses the Bayesian principle that the posttest likelihood of a condition is a function of the pretest probability of the condition and the properties of the test itself. Put another way, each capacimeter score alters the pretest or prior odds that a person has capacity; the posttest or posterior odds reflect the prior odds times the SSLR associated with the score that a person receives. For additional
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Table 1
Results o f Capacimeter Tests in a Group o f 200 Individuals (Base Rate o f Incapacity = 50%)
Score (range) __57
Posttest likelihood of being competent with these scores
N of actually incompetent individuals with these scores
N of actually competent individuals with these scores
Total N with these scores
< .20 .22-.27 .30-.37 .41-.48 .52-.59 .63-.66 .70-.78 > .80
44 12 12 10 8 4 5 5
5 3 6 8 10 8 16 44
49 15 18 18 18 12 21 49
of the individuals would get scores > 57 (implying a > 80% chance that they had capacity) or < 3 8 (implying a > 8 0 % chance that they lacked capacity): 102 individuals would fall in the still-ambiguous range, without the hoped-for definitive j u d g m e n t about their status. A s e c o n d way to deal with the t h r e s h o l d p r o b l e m is to define incapacity o n the basis of a level of deviation from average p e r f o r m a n c e . F o r example, in o n e of the M a c A r t h u r g r o u p ' s reports, p e r s o n s whose scores fell two s t a n d a r d deviations below the total g r o u p m e a n o n m e a s u r e m e n t s of u n d e r s t a n d i n g a n d r e a s o n i n g were classified as " i m p a i r e d " for p u r p o s e s of analysis. 95 T h e p r o b l e m with using a n a r b i t r a r y level of d e v i a t i o n from a g r o u p m e a n is that it is just t h a t - - a r b i t r a r y . T h e r e simply is n o r e a s o n to a s s u m e that a set fraction of the p o p u l a t i o n lacks capacity to m a k e all the decisions that might be posed b e f o r e them, even t h o u g h their t h i n k i n g might b e p o o r e r t h a n o t h e r persons. 96
Misdirecting Clinical a n d Judicial Decision M a k e r s ' A t t e n t i o n A w a y F r o m W h a t Patients Really N e e d By focusing clinical efforts a n d a t t e n t i o n o n q u a n t i t a t i v e a s s e s s m e n t of a putative y e s - n o a t t r i b u t e , a c a p a c i m e t e r m a y direct a t t e n t i o n away from what clinicians can discussion, see Douglas Mossman, FurtherComments on Portrayingthe Accuracy of ViolencePredictions, 18 LAW& HUMANBEHAV.587, 593 (1994); John C. Pierce & Richard G. Cornell, IntegratingStratum-specific Likelihood Ratios with theAnalysis of ROC Curves, 13 MEI~.DEClSIONMAIONG141 (1993). 95MTCS--IV, supra note 11, at 1034-35. This approach is similar to that commonly used to set "reference values" for laboratory tests in medicine. With normally distributed test results, one expects that about 2.5% of individuals fall more than two standard deviations below the mean. Curiously, however, 38 of 498, or 7.6%, of the MacArthur study participants were classified as having impaired understanding, and 30 of 498, or 6.0%, were classified as having impaired reasoning. Id. at 1035, Table 1. We remind readers that the MacArthur group did not equate scores in the "impaired" range with decisional incapacity, as the passage quoted supra note 93 shows. 96In this regard, it is important to note that at least 20% of scores from the MacArthur group's hospitalized schizophrenic patients indicated impairment, and 52% of these patients had impairment on at least one of the three measures used. Almost a fourth of the hospitalized depressed patients registered impairment in one or more area. Id. at 1035-36. Although such arbitrarily defined impairment is not equivalent to decisional incompetence, it does lend support to the Supreme Court's view that lack of ability to exercise informed consent is a foreseeable accompaniment to the need for psychiatric hospitalization. Zinermon v. Burch, 494 U.S. at 138-39. For some thoughtful comments on this issue and its implication, see MTCS-III, supra note 11, at 171-72.
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and should do in working with patients whose thinking is impaired. For a large number of individuals in the middle stages of a dementing process (and for many other individuals who have other kinds of mental impairments that affect decisionmaking capacity), a forced, binding, either--or categorization about capacity is not necessary or helpful. For these patients, there may still be things that professional caregivers can do to enhance and assist autonomy. 97 What many mentally impaired individuals need is assisted consent or assistance in the consent process, a subtle and nuanced approach to thinking about making medical decisions (and hence a concept that the legal system is poorly equipped to accommodate). 98 Such an approach respectfully considers their expressed preferences, maximizes their mental abilities, and empowers them despite their cognitive impairments. 99It is an approach that is in jeopardy of quickly becoming ignored if there is too enthusiastic a rush to quantify and categorize decisional capacity according to standardized test scores. Clinical Practice Parameters: A Preferred Alternative Many of the criticisms lodged against the currently prevalent, subjective, ad hoc, inconsistent methods of assessing decisional capacity for medical patients are substantially correct. However, the hope that a universal capacimeter could accomplish this task more efficiently, reliably, accurately, and objectively seems to us doomed to produce less than satisfactory outcomes--even when the assessment instrument has been designed and evaluated by researchers as perspicacious, skilled, respected, and sensitive as Appelbaum, Grisso, and their colleagues. As a superior alternative to experimentation with major and minor permutations of specific measurement instruments, we propose instead that time and resources be invested in the development and dissemination of relevant clinical practice parameters (CPPs). CPPs (also labelled clinical guidelines or clinical standards, among other designations) have been defined by the Institute of Medicine of the National Academy of Sciences as "systematically developed statements to assist practitioner and patient decisions about appropriate health care for specific clinical circumstances. ''1°° Over the last decade, various professional societies, 1°1 individual health 97Brian F. Hofland, When Capacity Fades and Autonomy is Constricted: A Client-Centered Approach to Residential Care, GENERATIONS,Winter 1994, at 31. 98See Jan E. Rein, Clients W~thDestructive and Socially Harmful Choices--What's An Attorney to Do? 62 FORDHAM L. REV. 1101 (1994) (criticizing the legal system's exclusive reliance on the competency construct to determine how and when to interfere with individual choice. The author argues that this exclusive focus has produced an overreliance on dehumanizing guardianship proceedings and has retarded the development of more discriminating, less intrusive, and more helpful mechanisms for dealing with problematic choices.). 99See Duncan S. MacLean, Letter: Physician Assessment of Patient Competence, 43 J. AM. GERIATRICS SOC'Y 725 (1995) ("Just as we provide walkers to persons with mild ambulation dysfunctions, let us provide counsel and support to persons with mild decision-making dysfunctions"); Marshall B. Kapp, Health Care Decision Making by the Elderly: I Get by with a Little Help from My Family, 31 GERONTOLOGIST 619 (1991); Marshall B. Kapp, Informed, Assisted, Delegated Consent for Elderly Patients, 52 ASS'N. OPERATING RM. NURSES (AORN) JOURNAL857, 858--60 (1990). 100CLINICAL PRACTICE GUIDELINES: DIRECTIONS FOR A NEW PROGRAM 2 (Marilyn J. Field & Kathleen N. Lohr eds. 1990). See also David M. Eddy, Practice Policies--WhatAre They? 263 JAMA 877 (1990). I°IU.S. GENERAL ACCOUNTING OFFICE, GAO/PEMD-9-11, PRACTICE GUIDELINES: THE EXPERIENCE OF MEDICAL SPECIALTY SOCIETIES (1991); Kelly & Toepp, Practice Parameters: Development, Evaluation, Dissemination, and Implementation, 18 QUAL. REV. BULL. 405 (1992).
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care providers, 1°2 insurers and managed care plans, and the federal Agency for Health Care Policy and Research 1°3 have promulgated numerous practice parameters, 1°4 including several of direct relevance to mental illness diagnosis and treatment. 105 Ideally, practice parameters are developed by experts in the field on the basis of a careful review of the best scientific evidence available, as reported in the medical literature and at professional meetings. Properly drafted, they provide information and guidance that encourages physicians to practice within certain wide boundaries, but without imposing limitations that are so restrictive that they are interpreted by practitioners as an imposed recipe for "cookbook" medicine) °6 Credible CPPs establish a range of professionally acceptable alternatives, rather than a rigid edict from which a practitioner deviates only at great peril. The motivations propelling the CPP movement forward are at least threefold: (a) improving the quality of care provided to patients by reducing the use of treatments or other clinical modalities for which no supporting outcome data presently exist; (b) containing health care expenditures by promoting more costeffective medical interventions; and (c) protecting health care professionals against unfounded medical malpractice liability claims based on a professional's deviation from practices that may have become customary but without supporting scientific evidence proving safety and effectiveness. Admittedly, many practical questions remain about the ramifications of CPP promulgation, and it is not clear yet how successfully the intended objectives will be achieved) °7 Nonetheless, clinicians who conduct decisional capacity evaluations would be aided by having substantive guidelines available. CPPs thus should satisfy l°2See Ron Winslow, Thirteen Cancer Hospitals Are Forging Network in Bid to Compete for Patients, WALL ST. J., Feb. 1, 1995, at B4 ("A major goal of the network is to develop uniform standards and guidelines for treatment of a variety of cancers in an effort to improve both quality and cost-effectiveness of care."). 103AGENCY FOR HEALTH CARE POLICY AND RESEARCH, U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES, A H C P R Pub. No. 95-0045, USING CLINICAL PRACTICE GUIDELINES TO EVALUATE QUALITY OF CARE, Volume 1: ISSUES (1995). l°4In 1995, the American Medical Association identified approximately 1,800 formal practice parameters. AMERICANMEDICAL ASSOCIATION,DIRECTORY OF PRACTICE PARAMETERS(1995). l°5Mental health-related topics already included in the Agency for Health Care Policy and Research Guideline Series are Depression and Screening for Alzheimer's disease. See Steven H. Woolf, Practice Guidelines: What the Family Physician Should Know, 51 AM. FAM. PHYSICIAN 1455 (1995). Cf. American Psychiatric Association, Practice Guidelines for the Treatment of Patients With Substance Abuse Disorders: Alcohol Cocaine, Opioids, 152 AM. J. PSYCHIATRY3 (Nov. 1995 Supp.); American Psychiatric Association, Practice Guidelines for Psychiatric Evaluation of Adults, 152 AM. J. PSYCHIATRY65 (Nov. 1995 Supp.). 106AGENCY FOR HEALTH CARE POLICY AND RESEARCH, U.S. DEPARTMENT OF HEALTH AND HUMAN SERVICES, A H C P R Pub. No. 95-0046, USING CLINICAL PRACTICE GUIDELINES TO EVALUATEQUALITY OF CARE, Volume 2: METHODS (1995). ~°7Regarding outstanding issues about legal implications, see NATIONAL HEALTH LAWYERSASSOCIATION, COLLOQUIUM REPORT ON LEGAL ISSUES RELATED TO CLINICAL PRACTICE GUIDELINES (1995). Regarding questions about the actual impact of practice parameters on clinical practice, see, e.g., David M. Cline et al., Physician Compliance With Advanced Cardiac Life Support Guidelines, 25 ANNALS EMERG. MED. 52 (1995); A. Gray Ellrodt et al., Measuring and Improving Physician Compliance With Clinical Practice Guidelines, 122 ANNALS INTERN. MED. 277 (1995); T. Ann Gorton et al., Primary Care Physicians' Response to Dissemination of Practice Guidelines, 4 ARCH. FAM. MED. 135 (1995); Lawrence M. Lewis et al., Failure of a Chest Pain Clinical Policy to Modify Physician Evaluation and Management, 25 ANNALSEMERG. MED. 9 (1995); Laura-Mae Baldwin et al., Do Providers Adhere to ACOG Standards? The Case of Prenatal Care, 84 OBSTET. & GYNECOL. 549 (1994).
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clinicians' needs and could make a valuable contribution to the care of evaluees. The Agency for Health Care Policy and Research, American Psychiatric Association, American Psychological Association, and other interested professional organizations, working singly or (preferably) through a coordinated effort, should undertake this ambitious project. These organizations should sponsor and draw together the most knowledgeable and respected mental health, gerontological, and legal scholars to engage in the exercise of reaching consensus on a set of parameters based on a comprehensive analysis of the scientific and legal literature and of case and statutory law. This review and its resulting product additionally should be informed by extensive identification and consideration of ethical and social policy values undergirding the entire capacity evaluation enterprise. CPPs developed in this arena should direct clinicians' attention beyond mere assessment to the construction of sensible, nonlegalistic, nuanced responses to their patients' mental impairments. They also should attend to a number of specific questions related to capacity assessments. Examples of such questions include: • Who should conduct capacity evaluations? • Under what conditions should evaluations be conducted on multiple occasions, over extended periods of time, or in various settings? • What events should trigger a formal evaluation? • What specific assessment instruments ought to be used in which types of circumstances, and for which purposes? • What kinds of considerations should enter into the selection of instruments? • How accurate are particular assessment instruments? • For what populations are they applicable? • What conditions and circumstances reduce their accuracy? • How should particular test results be interpreted and applied? • When should legal intervention be sought, and by whom? • How can clinicians present their findings to courts in ways that optimize informed legal decision making? • How can clinicians and legal decision makers translate findings into workable solutions that provide needed assistance to patients and that maximize autonomy while protecting them from the consequences of cognitive impairments? These questions are not new. Indeed, the research findings and scholarly commentary addressing many of them are already voluminous. What is needed, however, is a credible process for collecting, critically examining, and drawing up usable guidelines from our extensive research and practice experience. Such an endeavor is more likely than the quest for the Holy-Grail-as-capacimeter to influence both medical and legal practice in ways that improve society's ability to fully respect patient autonomy while protecting nonautonomous persons from the ravages of social abandonment and neglect. Received December 20, 1996 Revision received January 26, 1996 Accepted February 5, 1996 u
