Evaluating Decision-making Capacity in the Elderly: A Review of Recent Literature
Marshall B. Kapp, JD, MPH
SUMMARY. This article critically reviews and analyzes recent contributions to the medical and legal literature dealing with the subject of defining and assessing decision-making capacity in older patients/clients. The themes and issues set forth in this burgeoning literature are described and guidelines are commented upon in terms of their usefulness to practitioners and the ethical and social policy implications they raise.
Before a proxy decision-maker in the form of a guardian or conservator may be appointed by a court to act on behalf of an individual, the court must make a determination that the individual in question (the ward) presently lacks the mental capacity to make decisions on his own behalf. There is widespread acceptance of the concept that, because of primary mental illness or physical maladies with medical or psychological consequences, some people are not able to understand and appreciate the quality of their decisions and to engage in an autonomous, authentic decision-making process (Tremblay, 1987). However, the attempt to achieve a precise, easily measurable and applied legal definition of decisional incapacity was likened over a decade ago to a “search for the Holy Grail” (Roth, Meisel & Lidz, 1977). Little has happened in the realm of statutory or case law development in the recent past to change that assessment. Although standards differ slightly among the jurisdictions, legislatures and courts continue to define decisional capacity, if at all, only broadly and vaguely. To the consternation of health care, human service, and legal professionals who work with older persons of questionable capacity, the mechanical “competency meter” to which an individual might be connected and a numerical “readout” produced has not yet been invented.
Nonetheless, voluminous literature in the health, human service, and (to a much lesser extent) in legal journals has arisen in the subject area of defining and assessing decisional capacity, particularly for the elderly for whom memory, intelligence, and problem-solving ability may be compromised. Especially in the absence of precise guidelines provided by legal authorities, this literature is significant, for it informs actions by those professionals whose judgments about patient decisional capacity (as will be discussed further below) generally de facto determine whether the individual’s spoken choice will be followed or formal or informal proxy decision-making will occur. This article identifies some common threads or issues discussed in a few recent selections from this burgeoning literature.
Criteria or Tests of Capacity
There is widespread acceptance by now of the concept that decisional capacity is a matter of the patient’s functional ability to make decisions, rather than one that is automatically determined by agreement or disagreement with an outcome (that is, whether or not the decision itself is one that a ‘reasonable’ person would have reached) or the patient’s status or membership in a particular ‘vulnerable’ class based on age or medical diagnosis. “The most important task for the legal standard of competency is to distinguish effectively between foolish, socially deviant, risky, or simply ‘crazy’ choices made competently, and comparable choices made incompetently. Although incompetent behavior may be restrained, identical competent behavior may not” (Tremblay, 1987).
Under the heading of functional assessment for decision-making purposes, four distinct but related standards are mentioned repeatedly (Appelbaum & Grisso, 1988; Stanley, Stanley, Guido & Garvin, 1988). First, is the patient able to evidence and communicate a choice, and one that is stable enough over time to permit its effectuation? Second, can the patient understand relevant information, both in terms of specific facts and the patient’s own role in the decision-making process? This standard has the virtue of relatively easy testability, but depends heavily on the patient’s verbal (rather than reasoning) skills. Third, what is the quality of the patient’s thinking process; can the patient manipulate information logically? Is the patient able to weigh the decisional factors according to the values that the patient himself has assigned those factors? Is the outcome of the patient’s decision-making exercise consistent with his starting premises? Fourth, does the patient appreciate the nature of his own situation (e.g., rather than denying a serious medical problem or risk) and the consequences of the decision for himself?
In a pragmatic roadmap to capacity assessment in the context of refusal of antipsychotic medications by a mentally disordered patient, one psychiatrist (Beck, 1987) has broken these criteria down into two elements: (1) capacity to assimilate relevant facts and (2) appreciation or rational understanding of the patient’s situation as it relates to the facts. Beck’s clinical definition that combines these two elements states that a mentally disordered person has capacity to refuse treatment if he is aware of having a mental disorder, has sufficient factual knowledge about medication and mental disorder, and does not base refusal on delusional beliefs.
Broken down further, Beck’s criterion of capacity for assimilating relevant facts requires that the patient be educated about, and aware of, pertinent facts but not that the patient agree with the clinician’s interpretation of those facts. Put differently, the patient who says in effect, “I know what you say, but I do not agree,” possesses decisional capacity.
Beck reduces the rational understanding criterion to two parts. Under the heading “Acknowledgement versus Denial of Illness,” he states that a patient may deny his illness either correctly, because in fact there is no illness, or incorrectly because the patient does not understand his own situation. Only denial of a real illness signals decisional incapacity; consequently, the clinician’s first task in this formulation is to verify the existence of an actual illness that the patient is denying. Under the heading “Delusional Basis for Refusal,” Beck declares that delusions only produce decisional incapacity if they relate to the treatment refusal. The clinician should probe whether even the delusional patient’s choice rests on some other, realistic foundation.
The distinction between comprehension of facts, on one hand, and the quality of reasoning using those facts, on the other, as separate elements of decisional capacity is illustrated in recent research by Stanley et al., (1988). In their study, this team compared the capacity of patients with mild or moderate Alzheimer’s disease to that of older persons with major depression, to determine whether these groups encounter special problems with the informed consent process beyond those difficulties that have been identified previously in the general elderly population. Based on individual interviews with the subjects during which quantitative measurements were assigned, these researchers found no differences with respect to quality of reasoning between the cognitively impaired, the depressed, and a control group. Even the cognitively impaired could weigh risks and benefits, at least globally. However, this study found significant differences in the comprehension of consent information, with the Alzheimer’s patients experiencing the most difficulty. Stanley et al., posit even greater problems for the more severely cognitively impaired.
Psychiatrists Gutheil and Bursztajn (1986) emphasize that decisional capacity depends not just on cognitive factors, but can also be influenced by psychotic states and affective disorders. They submit that many physicians, attorneys, judges, and guardians ad litem are ‘taken in’ by incapacitated individuals who successfully feign decisional ability through their talent for remembering and reciting information without understanding or appreciating its meaning for them. Typical patient types in this category are the ‘glib paranoid,’ the pessimistic and severely depressed patient, the denying manic or hypomanic person, or the patient with anorexia nervosa.
Lawrence Hipshman (1987) proposes a new model for assessing decisional capacity: the patient’s ability to form a workable ‘therapeutic alliance’ with the clinician. Under what he calls the ‘legal’ component of his model, he would inquire whether the patient is able to consult effectively with the clinician regarding treatment (an inquiry intentionally analogous to the Supreme Court’s Dusky (1960) standard of ability to consult with and assist legal counsel as the determinant of a criminal defendant’s competency to stand trial). Taken by itself, Hipshman’s therapeutic alliance definition of capacity seems to beg the question; it is precisely the issue of the patient’s ability to work ‘effectively’ with the clinician that is at stake. However, Hipshman’s so-called ‘ethical’ or autonomy component defines ‘effective’ decision-making in a manner that makes his model potentially quite useful: Does the patient, collaborating with the clinician, have the capacity to express his own beliefs and preferences and to make decisions consistent with those personal values? In other words, are the patient’s choices authentic for him? Importantly, if the impediment to the formation of an effective therapeutic alliance stems from some factor other than the patient’s cognitive or psychological deficits (such as a personality rift between patient and clinician), decisional incapacity should not be inferred.
Limits of Standardized Tests
A number of standardized tests for measuring mental functioning in the elderly have been developed (Grisso, 1986). Silver (1987) and Baker (1989) are among recent authors who have reviewed screening tests of cognitive ability frequently used with the elderly in clinical practice. The former described the Alzheimer’s Disease Assessment Scale, Weschler Adult Intelligence Scale, and the Weschler Memory Scale. Psychiatrist Baker compares the Folstein Mini-Mental State Examination, Kahn Mental Status Questionnaire, Cognitive Capacity Screening Examination, Mattis Dementia Rating Scale, and Kokmen Short Test of Mental Status. While Dr. Baker cites standardization and quick administer ability by nurses as benefits of these tests, it is admitted that they are preliminary screening instruments only (i.e., first steps), rather than the final word on a patient’s capacity, and that the choice of instrument ought to vary depending on what aspect of the patient’s mentation is being measured: orientation, memory, cognitive processing, or neurologic functioning.
Other current literature highlights the limitations of bedside mental status examinations and standardized screening devices by themselves to assess decisional capacity (Farnsworth, 1989; Hipshman, 1987). Naugle and Kawczak (1989) note that one of the most commonly employed screening devices, the Mini-Mental State Examination, is intended for use for diagnostic—hence, treatment—purposes. Even so restricted, problems with false positives and false negatives in identifying cognitive impairment abound. Although this instrument was in no way devised for use in assessing decisional capacity, it is frequently misused by clinicians for that purpose.
On the other hand, physician Gerald Goodenough (1988) argues the virtues, in terms of improved objectivity of physician evaluations of mental capacity, of using a standardized functional testing instrument and recording findings on a uniform form. He decries the fact that, in assessing mental capacity in a guardianship context, there are no objective criteria as there are for most other phenomena (such as the existence of a physical disability in the Workers’ Compensation context) that the physician is asked to evaluate. He criticizes most physician reports on decisional capacity as conclusory, based on diagnosis (i.e., the patient’s status) rather than a determination of how, if at all, that diagnosis affects the patient’s ability to function. Among the problems Goodenough refers to in physician evaluations are medical bias against the elderly and toward the family seeking control, a failure to realize that capacity may be a transient state, undue influence of communication problems in the older patient, and a general misunderstanding of the reason for a capacity evaluation.
While favoring the spread of standard functional testing instruments and recording forms to improve objectivity, Goodenough expresses pessimism that the average practicing physician has the financial or professional incentive to learn better techniques for such medicolegal assessments. In addition, he ignores the probability that widespread use of standard devices for assessing decisional capacity would encourage physician overreliance, resulting in a mechanical filling-in-the-blanks thinking process deemphasizing appropriate professional judgment and flexibility.
Decision-Specific Nature of Capacity: Sliding Scale Standard
It is by now uniformly accepted in the literature (even if not yet universally applied in medical or legal practice) that capacity to make personal choices must be judged on a decision-specific, as opposed to a global or all-or-nothing, basis. A patient’s capacity must be judged according to the particular decision with which that patient is confronted, whether medical, legal (e.g., conducting a certain business transaction) (Smith, 1988), or other in nature. A patient may be generally capable of making most decisions but unable emotionally (Gutheil, Bursztajn, Kaplan & Brodsky, 1987) to weigh risks and benefits concerning a specific question, or not able to comprehend information or engage in a rational thought process on most matters but capable of focusing sufficiently on a specific matter of importance to him (Farnsworth, 1989; Mahler & Perry, 1988). In a similar vein, there is broad consensus in the literature that capacity may be partial or compromised rather than entirely absent. Capacity thus may fall or fluctuate along points of a continuum, instead of resting at either end (Kloezen, Fitten & Steinberg, 1988). Likewise, there is little dispute that decisional capacity refers only to a minimal or baseline functional level, rather than an ideal of perfect comprehension and rational thought (Appelbaum & Grisso, 1988).
Since mental capacity is decision-specific and fluctuates along a continuum, some have proposed that it be evaluated according to a sliding scale, where less capacity is required for questions that are simpler or carry less serious consequences than for more complex or consequential decisions (Drane, 1984; Diane, 1985; President’s Commission, 1982). Although courts have not explicitly adopted this concept, Appelbaum and Grisso (1988) surmise that judicial findings may be affected implicitly by the potential consequences of the decision facing the patient at the time of inquiry.
Many commentators reject the notion of a sliding scale, arguing that the assessor should not adjust the standard of capacity required but instead ought to apply an unchanging standard of capacity to the particular decision in question. Thus, the standard of capacity remains constant but its application depends on the specific case— both in terms of the unique patient and the unique choice encountered. For example, Kloezen et al, (1988) would replace a sliding scale of decisional capacity approach with the use of a combination of increasingly complex hypothetical clinical vignettes, where the patient’s answers are scored against ‘normal’ responses, and a uniform mental status examination. Mahler and Perry (1988) reject the sliding scale idea in favor of a three-step process: (1) focusing on the capacity to make specific decisions and placing the patient’s ability on a spectrum of impairment; (2) using the Hundert (1987) method of identifying and weighing all conflicting values in the case, while recognizing the law’s presumption of patient autonomy; and (3) working with the patient and staff to reach a mutual decision, while keeping open the possibility of judicial involvement.
Assisted Decisional Capacity: Information, Treatment, Manipulating the Environment
Consistent with the concept of decisional capacity being of a choice-specific, spectrum nature rather than falling in an all-or-nothing category, commentators universally endorse the notion of ‘assisted capacity.’ This doctrine holds that many older persons, although perhaps not capable of making entirely autonomous, authentic decisions completely on their own, are nonetheless able to muster ‘enough’ powers of comprehension and rational thinking when given the proper degree of assistance, encouragement, and support by others. This assistance to render the older person sufficiently able to function as decisionmaker may take the form of providing adequate information, treating underlying medical problems, and manipulating environmental factors.
Family physician Farnsworth (1989) underscores that what appears as incompetent treatment refusal by an elderly patient often is a matter of the patient being inadequately informed about the nature, rationale, and projected benefits of the proposed medical intervention. Appelbaum and Grisso (1988) caution that the capacity evaluator cannot assume that the patient has been informed adequately. Farnsworth suggests that third party mediation occasionally may be worthwhile in this regard. A study by Beck of state mental hospital inpatients and antipsychotic medications (Beck, 1988) concluded that apparent decisional incapacity can be corrected for many patients by providing them with more pertinent information (i.e., improving their factual knowledge), to go along with their rational understanding. Continual education of the patient concerning benefits and risks of treatment, according to Beck, not only improves decisional capacity, but makes rational consent and compliance more likely.
Tymchuk et al., (1988) discovered that the manner in which information is presented to elderly persons substantially affects comprehension. In their study, consent information given to older nursing home patients (all of whom were pre-judged by facility staff to be mentally capable) in simplified and storybook formats was understood better than information presented in a standard format. The study also found that older persons faced with important decisions want, and are able to handle, substantial amounts of information. Results provide some support for the hypothesis that a simplified or storybook presentation of information format improves quality of reasoning as well as factual comprehension. Tymchuk et al., recommend, in addition to simplification of the subject matter for the patient, that the information so simplified ought to be presented in repeated immediate (massed practice) or repeated delayed (distributed practice) fashion to reinforce the message.
Evaluation of decisional incapacity may also be confounded by the presence of a treatable underlying medical pathology. The primary precept of Gutheil and Bursztajn’s credo (1986) is to intervene clinically first. Appelbaum and Grisso (1988) urge that the patient be given a chance to exhibit his highest level of mental functioning and that treating medically treatable conditions initially may often improve that functional level and thereby enhance the patient’s autonomy. Mahler and Perry (1988) also stress the clinician’s early duty to recognize and minister to non-cognitive problems like interpersonal patient/staff barriers, depression, delirium, or denial that may interfere with the patient’s capacity and undergird his treatment refusal. For all of these authors, the clinician’s duty to explore, rule out, or intervene regarding underlying medical problems precedes any resort to the courts for the involuntary imposition of a substitute decisionmaker. To illustrate the clinician’s role in investigating the possible physical basis for a patient’s seemingly irrational decision, Kloezen et al., (1988) describe a case where, once the patient’s family convinced him to take his blood pressure medicine, the patient’s capacity improved markedly.
Besides admonishing clinicians to make certain that the patient has been properly informed and that treatable physical conditions have been addressed, the literature is also clear that clinicians should account for environmental factors in assessing capacity and should manipulate those factors where appropriate. Since capacity often varies over time and according to physical surroundings (Farnsworth, 1989), clinicians are advised to rely on multiple examinations conducted over a period of time and, ideally, in a variety of settings (Appelbaum & Grisso, 1988). An attempt to rehabilitate a seemingly cognitively compromised patient to make the best use of his existing capacity (Kloezen et al., 1988) also entails taking into account, and responding to through education of both patient and evaluator, special ethnic, cultural, and educational factors manifesting themselves as barriers to decisional capacity (Appelbaum & Grisso, 1988).
The value of family, friends, and professional caregivers in assisting the patient to deal more competently with difficult decisions through general support and encouragement is a constant thread in the literature. As Gutheil et al., (1987) explain, a person who is bolstered by supportive relationships (including the therapeutic alliance with a medical professional) may be better able to cope with tough choices than one who feels all alone and consequently is overwhelmed by anxiety. Evaluation of capacity is an ongoing process influenced integrally by patient interactions with others (Mahler & Perry, 1988).
Capacity versus Competence: Clinical Assessment versus Judicial Intervention
The literature in both medicine and law today draws a sharp distinction between the concepts of decisional capacity, on one hand, and competency, on the other. The former term relates to the opinion of a clinical evaluator concerning an individual’s functional ability to make autonomous, authentic decisions about his own life. The latter term refers to the judgment of a court of law about the same issue, which generally is the prelude to appointment of a proxy decisionmaker over the objection, or at least without the voluntary consent, of the person deemed to be incompetent. The clinician only opines whether the patient ‘appears’ to have capacity to make a particular decision within a specific social/medical context, but does not possess the authority to ultimately decide if the patient is legally competent (Mahler & Perry, 1988).
There is strong support for the “least restrictive alternative” position (Kloezen et al., 1988) that most cases involving decisionmaking for persons of questionable functional status are better dealt with through evaluation of capacity rather than competence. That is, resort to the courts to resolve the issue, with the resultant creation of a guardianship or conservatorship, should be avoided wherever possible (Annas & Densberger, 1984).
Commentators agree that it is the treating clinician’s role in the first instance to gather data and to decide whether the particular circumstances trigger the need to seek (1) further clinical consultation regarding the patient’s capacity and/or (2) a judicial adjudication of incompetence and formal appointment of a surrogate (Appelbaum & Grisso, 1988). There are no clear guidelines on this largely ethical question of when the presumption of competence has been sufficiently rebutted and the circumstances as a whole compel resort to the courts (Hipshman, 1987).
One geriatrician (Stollerman, 1989) asserts that an appraisal of mental capacity should occur at the outset of every encounter with an older patient (or any age patient, for that matter), at least implicitly. Stollerman laments that usually such appraisal is completely omitted from the medical record. His own appraisal guidelines are described by the acronym ROAMS: Reaction, Orientation, Affect, Memory, and Speech.
When the treating clinician is an attorney – that is, when the issue of mental capacity arises in the context of a client of questionable mental capacity relating to an attorney for the purpose of obtaining legal services – that clinician too must make an initial assessment of the patient/client’s ability to make autonomous, authentic decisions, in this case regarding the exercise of legal (rather than medical) options. The American Bar Association’s 1969 Model Code of Professional Responsibility and 1983 Model Rules of Professional Conduct fail to provide any guidance to the attorney for assessing a person’s functional capacity, beyond a permission (not a mandate) to consult an unspecified ‘diagnostician.’
Attorney Linda Smith (1988) suggests that consultation with medical diagnosticians may be useful to the attorney in documenting the patient’s capacity in case the issue is raised later and in facilitating the attorney’s attempt to assist (Smith calls it ‘gradual counseling’) the somewhat compromised patient in a decisionmaking process that obviates the need for court intervention. At the same time, she suggests caution because invoking a medical diagnostician may upset the patient/client and because many clinicians return assessments concentrating on medical diagnosis rather than functional evaluation and on global rather than decision-specific capacity. For Smith, the attorney’s key threshold concern is determining when, based upon the attorney’s own preliminary assessment, further clinical or judicial involvement is unavoidable, as opposed to relying on ‘gradual counseling’ and collaboration with informal proxy decisionmakers to achieve the patient/client’s best interests or substituted judgment.
When cases are brought into the judicial arena, there is consensus that judges’ determinations of legal competence are very heavily influenced by clinical opinions concerning capacity (Mahler & Perry, 1988), to the point where courts in large measure have ‘turfed’ the problem of mental capacity to the clinicians (where the majority of commentators argue that the issue properly belongs) (Hipshman, 1987). Vital in this aspect of forensic medicine – the application of medical expertise and experience to help resolve legal issues—are the clinician’s notes in the patient’s record (Farnsworth, 1989). Gutheil and Bursztajn (1986) counsel their psychiatric colleagues to anticipate the possibility that a patient’s mental capacity may become an issue, and to document thoroughly the clinical determinants (i.e., the facts) supporting the clinician’s view regarding capacity or incapacity. Consultations concerning the patient’s capacity with family, treatment and forensic specialists, and other professional staff who have contact with the patient also should be documented in the patient’s chart.
Leading forensic psychiatrists and psychologists emphasize the value of clinician (especially psychiatrist/attorney collaboration on difficult capacity assessment cases (Appelbaum & Grisso, 1988). For Gutheil et al., (1987), the attorney as an advocate focusing on short-term rights and the clinician as an expert investigator and therapist concentrating on long-term benefits make a powerful and constructive team. Moreover, the clinician has an essential role in educating institutional attorneys and the courts about clinical issues and in employing attorneys in the presentation of clinically probative evidence (Gutheil & Bursztajn, 1986).
A legally and clinically usable definition of decisional competence that is both sufficiently specific to avoid false positives and broad enough to avoid false negatives is probably impossible; some clinical and judicial leeway is both inevitable and desirable (Mahler & Perry, 1988). Moreover, a determination of clinical capacity or legal competence does answer the more important question of what particular choice ought to be made by or for the patient. Nonetheless, the assessment of capacity is a vital threshold issue for those concerned about decisionmaking by and for older persons, the extent of individual autonomy versus protectionism, and the implications of substitute decisionmaker involvement. The type of medical and legal literature reviewed in this article will continue to grow, based on clinical experience, empirical investigation, and philosophical and legal analysis, as commentators continue to identify and flesh out the common threads discussed above.