A conceptual framework for utilizing a functional assessment approach for determining mental capacity: a new look at informed consent in rehabilitation.
The development of functional assessment instruments to evaluate a person's decision making capacity represents the most recent approach for addressing issues concerning informed consent for persons with disabilities (Marlett, 1984; Tor & Sales, 1994). The functional assessment approach is, in part, a result of legislative changes requiring more stringent measures for the courts to determine the need for persons with disabilities to be appointed a substitute or surrogate decision maker, such as a guardian of the person. Although no single evaluation instrument can determine a person's mental or psychological capacity for decision making, the functional assessment approach advocates that courts look more objectively at behavioral evidence of functional abilities in the person's daily activities when determining the individual's need for a substitute decision maker (Nolan, 1984).
This article will provide rehabilitation professionals with useful guidelines for determining when and if a referral for a substitute decision maker needs to be made, and how much assistance is needed in obtaining an informed consent for rehabilitation services, without imposing unnecessary restrictions on the person's autonomy. A conceptual framework for developing functional assessments will be presented that will provide an approach to assist rehabilitation professionals in evaluating information that many state laws now require in court hearings to establish decision making capacities among persons with disabilities. By operationalizing such legal concepts as "unable to care for self or property" and "unable to make or communicate decisions", this article supports functional assessments that will ultimately provide a more informed, specific, and individualized recommendation to the court regarding a person's decision making capacity.
Determining Capacity and Incapacity
In Search of a Uniform Definition
Although the term "mental incapacity" and "mental incompetency" are used interchangeably, there is a movement in the literature as well as the revised state probate codes to use the term "mental incapacity" so as to avoid the stigma of the person being referred to as "mentally incompetent". Probate codes in general hive been criticized as being vague, ambiguous, and inconsistent in its application (Scogin & Perry, 1986; Tor & Sales, 1994; Veatch, 1986). Presently, the concept of incapacity can (a) vary by jurisdiction, (b) differ legally and clinically, and (c) depend on the type of informed consent decisions confronting the person with a disability (Gutheil & Appelbaum, 1982 Parry, 1990). Also, when probates use different values and assessment measures, the definition of capacity fails to appreciate that a person may have the capability to make an informed decision in one area of their life, but may in fact lack substantial capacity in other areas (Apolloni & Cooke, 1984; Tor & Sales, 1994). As a growing number of states have adopted the functional assessment approach to assist the courts in determining the need for a substitute decision maker (for & Sales, 1994), it becomes critical for clinicians and professionals who perform assessments to have a uniform definition of incapacity that is clear and consistent.
The Court's Role
A finding of incapacity is a legal decision made by the courts, as opposed to a medical decision which is made by a physician, psychiatrist or other medical specialists. Incapacity is measured by the degree with which a person can provide for, manage, and communicate decisions regarding their personal needs for health care, shelter, and/or property (Apolloni & Cooke, 1984; Mozer & Chamberlin, 1985). There are typically five viewpoints commonly represented in the legal system when deciding whether a person possesses the mental decision making capacity or ability to give an informed consent regarding their treatment and care (Casasanto, Simon, & Roman, 1991; Marlett, 1984; Stebuicki, 1994). These include the: (a) petitioner and their attorney, (b) probate judge, (c) physician or psychiatrist hired by the petitioner, (d) person who allegedly lacks the mental capacity for decision making (respondent), and (e) family member(s) of the respondent. There can be quite a difference of definition among these groups as to what constitutes decision making capacity.
Generally at a competency hearing, the court is required to inquire about the following areas to determine decision making capacity of the individual: (a) nature and extent of the respondent's general intellectual and physical functioning, (b) extent of the impairment of the respondent's adaptive behavior or the nature and severity of their mental capacity, (c) understanding and capacity of the respondent to make and communicate responsible decisions concerning his/her person, (d) capacity of the respondent to manage his/her estate and financial affairs, (e) appropriateness of the proposed or alternative living arrangements, (f) impact of the disability upon the respondent's functioning in the basic activities of daily living and the important decisions faced by the respondent, and (g) any other area of inquiry deemed appropriate by the court. Although this may appear to be a thorough and comprehensive inquiry, the functional assessment information that could assist attorneys and judges in evaluating the respondent's capacity for making decisions regarding these medical, mental health, and other rehabilitation needs is often lacking.
If a finding of incapacity is made by the probate, a substitute decision maker is usually appointed by the court (i.e., guardian of the person) to assist the person with a disability in making decisions in one or more major life-areas. The legal mechanism of adult guardianship may be utilized by the probate to appoint a person to serve as either plenary (full), limited, or temporary guardian of the person, and/or their estate, or both. Guardianship hearings are frequently rubber-stamp court procedures where the person with the disability is superficially represented by a guardian ad litem (GAL), which is typically an attorney (Stebuicki, 1994; Topoluicki, 1989). In fact, most guardianship cases are uncontested hearings where judges rarely appoint a GAL to represent the person who is allegedly incapacitated (Topoluicki, 1989). In reality, if there is no opposition to the petition for guardianship by the GAL or respondent, the court routinely appoints a guardian in accordance with the recommendation of the physician who prepared the report of disability. In uncontested cases, it is reported that court hearings typically take place within a few minutes (Stebuicki, 1994; Topoluicki, 1989; Wilber, 1991) and approximately 95% of all guardianship hearings result in the appointment of plenary guardian of the person (Bulcroft, Kielkopf, & Trippik, 1991). Thus, adult guardianship for persons with disabilities has serious legal and ethical implications and should only be utilized as a measure of last resort (Iris, 1990; Stebuicki, 1994; Topoluicki, 1989).
The importance of due process rights cannot be over-emphasized in guardianship proceedings. The appointment of a guardian intrudes on the fundamental liberty and privacy rights of the person who allegedly lacks decision making capacity, and may compromise autonomous decision making in many areas of the person's life (Herr & Hopkins, 1994; Scogin & Perry, 1986). The courts place a significant amount of confidence in the physician's written opinion, and many times persons are perceived to be mentally incapacitated even before the guardianship hearing begins (for & Sales, 1994). Overall, when the court system measures a person's capacity by using vague standards and limited assessment measures (e.g., Mini Mental Status Exam) they may fail to appreciate the person's ability to possess decision making capacity across different life-areas. Functional assessment provides a mechanism for improving this process of deciding mental capacity.
Assessing Mental Capacity
The courts and clinicians agree that assessing a person's mental status should be the first step prior to completing a functional assessment. Functional assessments provide additional measures of an individual's decision making capacity. Thus, the use of two or more measures are helpful in looking at different aspects of the person's level of functioning. For example, the examination of a person's mental state is essential in evaluating such individuals who have been diagnosed with traumatic brain injury, psychiatric and developmental disabilities, as well as persons with irreversible neurological impairments. Several instruments are available Mini-Mental State (MMS) exam, as described by Folstein, Folstein, and McHugh (1975). It is essential that a well trained psychologist or psychiatrist assess the pathological symptoms and conditions that may impinge upon the person's mental reasoning process.
There are a variety of conceptual models available for evaluating the quality of a person's mental capacity or mental status in regards to the person's decision making ability (Appelbaum & Grisso, 1988; Buchanon & Brock, 1989; Gutheil & Appelbaum, 1982; Wear & Brahams, 1991). The majority of these models suggest that the following factors be assessed: (a) person's knowledge that he/she has a choice to make; (b) person's ability to understand and communicate the available options and their advantages and disavantages; (c) person's cognitive capacity to reason, deliberate, consider relevant information and draw inferences about certain choices; (d) absence of any interfering pathological perception or belief, such as a delusional system surrounding the decision; (e) absence of any interfering emotional state, such as severe depression or euphoria; (f) absence of any interfering motivational pressure such as pathological rage; (g) absence of any interfering pathological relationship such as the conviction of helpless dependency on another person; (h) awareness of how others' view the decision and the general societal attitude towards the choices, and an understanding of his/her reasons for deviating from that attitude; and (i) set of values that has been stable over time.
Anderer's (1990) model is less stringent, and looks at the person's ability to receive and evaluate information, and to make or communicate decisions in three major areas. These include the: (a) awareness of needs and alternatives, (b) ability in expressing a preference, and (c) understanding of the consequences and appreciation of the choice, using the process of reasoning. As evidenced by case studies (Anderer, 1990; Folstein, et al., 1975; Tor & Sales, 1994; Wear & Brahams, 1991) a deficit in any of these above areas may lead to a determination of incapacity. Thus, it is recommended that the examination of the person's mental decision making capacity should focus on decisions that the person needs to make in functional situations, rather than on the individual's overall, general decision making capacity. This is a strength of functional assessment measures; focusing on activities that are necessary and critical for independent decision making across the major life-areas (e.g., medical, residential, financial).
The Continuum Model of Mental Capacity
The court system sometimes oversimplifies the assessment of persons with disabilities and their mental capabilities by creating a false dichotomy between total capacity and total incapacity. This approach fails to appreciate all levels of abilities and individual differences among persons who possess decision making difficulties. Thus, the Continuum Model of Mental Capacity (CMMC) that is proposed here (see Figure 1), should assist rehabilitation professionals in analyzing the individual's decision making capabilities along a continuum, rather than approaching rehabilitation services from the stigma of the older competent-incompetent paradigm.
[Figure 1 ILLUSTRATION OMITTED]
As shown in Figure 1, one end of this continuum is a person who possesses full mental capacity while at the other end is someone who is totally incapacitated to make decisions concerning their well-being. Such a continuum does not imply progression, unless of course a progressive neurological condition is present (e.g., AIDS dementia, alzheimer disease) within the individual. Rather, given the range of individual differences that exist in decision making abilities, it is an oversimplification to approach the issue of mental capacity by labeling persons as having either full mental capacity or as being totally incapacitated. Instead of conceptualizing mental capacity for decision making as a condition that is either present or absent, we need to view capacity along a continuum of differing levels of decision making abilities within the person's major life-areas. Thus, a person may be at different points along this continuum depending on the level of adjustment to their disability (e.g, persons with TBI four weeks post-injury vs. four months post-injury). Others may be more stable for an undetermined length of time (e.g., life-threatening disability in remission), or may move back and forth along both ends of the continuum (e.g, persons with alzheimer's disease).
The stigma of "incompetent" and the adjudication of persons with disabilities as "incapacitated", may also interfere with the individual's rehabilitation plan in that the person's legal status may significantly complicate how and what services they receive. A person's legal status may compromise his/her autonomous choices for decision making which may result in dependence on family members as substitute decision makers or professional service providers that may be overprotective. Thus, a person's judgement, reasoning, and insight can vary in different life-areas depending upon the: (a) types of decisions that need to be made; (b) type of disability; (c) past life experiences of the individual in dealing with specific issues; (d) patterns of the person's rational/irrational behavior and thinking; (e) culture differences; and (f) other relevant factors related to decisions regarding the person's overall well-being. Conceptualizing capacity along this model should assist rehabilitation professionals to: (a) explore more in-depth, the person's decision making capacity in relevant life-areas; (b) develop rehabilitation plans that fit the nature and seriousness of the person's disability; and (c) assess decision making capabilities in terms of the person's strengths and limitations.
Generally, functional assessment is a process of gathering information to help service providers understand how the individual with a disability is currently functioning in a decision making capacity on a day to day basis within the various environmental settings they encounter (Anderer, 1990; Tor & Sales, 1994). Primarily, functional assessments attempt to identify the individual's: (a) overall level of adaptive functioning (e.g., ADLs); (b) strengths and limitations in specific adaptive behaviors (e.g. social/interpersonal behaviors); (c) level and type of environmental demands where decisions must be made; and (d) resources to assist them in their abilities for decision making. Thus, functional assessments are not intended to exam the person's overall, global decision making capacity, rather, they focus on relevant functional decisions the person needs to make in specifically defined life-areas.
Because a person's decision making capability may fluctuate with changes in their underlying medical, physical, psychological condition, the functional assessment approach measures a' person's decision making capabilities across different environmental settings, and within different life situations. The functional assessment approach also requires information from one or more reliable, independent sources (e.g., nurses, rehabilitation professionals, social workers), and is an excellent tool for documenting change in a person's psychological, neurological, and physiological status over time.
Each disability has unique and specific characteristics that limit the individual's functioning. A thorough assessment requires information regarding the person's mental/emotional status, medical/physical condition, and adaptive level of functioning, prior to administering a particular functional assessment instrument. Prior to choosing any functional assessment instrument a profile of the individual's disability, functional mental capacity, and ability to communicate decisions across different life-areas is a primary consideration (Anderer, 1990). Parry (1990) advocates that functional assessments must examine the individual's unique set of abilities to perform daily life-skills with a special emphasis placed on the types and quality of decisions made by the person.
Prior to administering a functional assessment on persons who allegedly lack decision making capacity, the present author suggests the following guidelines to address: (a) Is the person's behavior potentially dangerous to self or other in his/her present environment? (b) Does the person's refusal to consent to treatment interfere with his/her medical and/or mental health or their overall care and well-being? (c) Does the person's refusal for treatment, diminish the potential for independent functioning within his/her community? (d) Does the treatment that is refused result in increased dependence on family members or other care-givers? (e) Do the refusal actions of the person, create a perceived need by the medical community for medications to manage inappropriate behavior or are other restrictive measures recommended? and (f) Does the person's family, care-givers, or other significant people agree that the person's refusal is a problem? Answering any of these questions in the affirmative may not be justification alone for the appointment of a substitute decision maker. The person who is allegedly mentally incapacitated may lack the certain necessary experiences in dealing with a particular procedure or intervention that is recommended to them.
Because a person's refusal of certain treatment interventions can prompt a mental capacity evaluation by a medical professional (e.g., Mini Mental Status Exam), it is critical that the above questions be investigated prior to administering any type of evaluation. The appointment of a substitute decision maker by the Probate is certainly the most restrictive intervention that could occur as a result of an overreaction by both medical and rehabilitation professionals. Thus, caution should be exercised so the person's legal rights to make his/her own personal-choice decisions are not compromised.
Existing Functional Assessment Measures
Currently, no widely accepted psychometric assessment exists that could measure decision making capacity for all groups of disabilities in all life-areas (Banja & Auerbach, 1989). Depending upon the person's specific disability and functional limitations, there are a number of appropriate functional assessment instruments. One such measure is the Individual Functional Assessment (IFA) (Saunders & Simon, 1987). This instrument was developed in response to New Hampshire's stringent requirements for assisting long-term care facilities in determining a resident's need for guardianship or other protective services. The IFA is completed by facility staff on those persons who exhibit significant difficulties in decision making. This assessment calls for an evaluation of the person's functional skills in eight behavioral areas (e.g., residential alternatives, legal matters, consenting to medical care, and so forth). If used correctly, the IFA can help to identify specific functional limitations and to ascertain whether these limitations interfere with the person's ability to make an informed consent regarding their care, treatment, placement, and financial affairs.
One other functional assessment instrument which appears to have application with a wide variety of mental, cognitive, or neurological disabilities is an assessment used in Alberta, Canada (Christie, 1984). This instrument was developed in response to the Dependent Adults Act of 1978, an innovative approach to provide support and protection for those adults whose disabilities are such that they cannot care for themselves and make reasonable judgments on their own behalf. This instrument, known as the Functional Assessment for Guardianship, consists of two parts. The first part has approximately 17 areas of information to be completed by a professional care-giver that encompasses a wide range of cognitive and functional activities (e.g., awareness, living skills, orientation). The second part is a form that is sent to family members requesting information regarding the person's financial status, names, addresses, and frequency of visits of family members, family problems that should be addressed, and suggested family members who would make the most suitable guardian. This assessment appears to be quite comprehensive in nature and involves the input of other professionals, a fact which may add to its credibility in court.
Many more functional assessment instruments exist that have been developed over the last 12 years or so. However, current functional assessment instruments must consider the wide range of life-areas in which to measure a person's decision making ability, with a special emphasis on the person's capabilities rather than their deficits. Further, instrument developers must be familiar with current probate laws so that the utility of such measures can be of value to judges who need to make important decisions regarding the person's rights to chose their own care and treatment.
A person's decision making capacity can vary across several dimensions which include the: (a) complexity of the decision to be made by the individual; (b) abstractness and nature of the information presented to the person; (c) recency in terms of the acquired knowledge needed to make an informed consent; and (d) motivation for choosing a course of action. Because mental capacity is generally not a fixed attribute that remains with the individual, regardless of environmental setting, decision making capability will fluctuate for some individuals. For example, a person who has a mild form of dementia may function quite well in the familiar surroundings of his/her nursing home, but may become confused and disoriented to other environments outside the home.
The following guidelines would be beneficial to address in the functional assessment of those individuals living in institutional settings and may give a more accurate picture of decision making capability within the person's specific institutional environment: (a) How does the facility assist the person in making decisions regarding their treatment? (b) How does the facility determine if a person can or cannot understand his/her rights to refuse any portion or all of their treatment? (c) Are alternative programs or services made available for those persons who refuse treatment? (d) Is there evidence that the person has been fully informed of the risks and benefits of specific treatment? (e) On what basis does the facility accept or not accept the person's informed choice? (f) Are there similar complaints or refusals of similar treatment procedures by other individuals in the facility? Overall, functional assessments should be an ongoing evaluation that involves a multidisciplinary treatment team approach utilizing other professionals outside the institutional setting that may be more familiar with the individual's past relevant decision making experiences and capabilities.
A psychiatric, neurological, or mental disability alone is not evidence to support a legal finding of mental incapacity (Brock & Wartman, 1990). As the population of individuals grow older, it becomes increasingly apparent that this group may be at risk for deficits in their mental decision making capacity. While a variety of legal definitions of capacity/incapacity exist, the current legal system for the most part appears to only recognize that the person is either totally "competent or incompetent". To protect persons with disabilities from being adjudicated totally incapacitated, some states have already passed laws that either mandate or encourage courts to order a pre-hearing functional assessment evaluation of the alleged incapacitated person (for & Sales, 1994). Functional assessment measures must evaluate the individual's unique set of abilities to perform daily life-skills. The focus should be placed on the types and quality of decisions made by the person on a day-to-day basis.
Despite compelling arguments for utilizing functional assessment approaches to determine a person's decision making capacity, the question remains-how will the courts use the information gathered by medical, mental health, and rehabilitation professionals to determine the degree of incapacity? Rehabilitation professionals may be in the best position to assess the more complex issues regarding functional mental capabilities because they are trained to provide the mental health and rehabilitative needs of persons with disabilities in many functional life-areas. Thus, rehabilitation professionals can play a major role in making recommendations to the courts concerning the individual's decision making capabilities to give informed consents.
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Mark A. Stebuicki, Rh.D., CRC, LPC, CCM, Assistant Professor, Department of Psychology and Counseling, MRC Program, PO Box 1560, Arkansas State University, State University AR 72467
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|Author:||Stebnicki, Mark A.|
|Publication:||The Journal of Rehabilitation|
|Date:||Oct 1, 1997|
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