Abstract

The concept of capacity, its ethical mandates, and a rationale for the assessment of capacity to execute a health care proxy was discussed. Special New York State regulations, relevant to the execution of a health care proxy by persons who have mental retardation, were reviewed, discussed, and compared with regulations in some other jurisdictions. Technical information about a health care proxy and the appropriate form for a simple health care proxy were described. A standard for psychologists and physicians to use in assessing the capacity of a person with cognitive impairments to execute a health care proxy is presented.

There is a presumption in American law that an individual has the prerequisite legal capacity to perform a legal act (e.g., accept or refuse medical treatment, sign a contract, get a marriage license, and create a will) once he or she reaches the age of majority (Appelbaum & Roth, 1982; Carney, Neugroshcl, Morrison, Marin, & Siu, 2001; Orel, 1998). In spite of this presumption, individuals whose capacity to give consent may be considered questionable include persons with a mental disability, minors, and those who have cognitive impairments (American Psychological Association, 2002; LaRue & Markee, 1995). Cognitive impairments can include mental retardation and other developmental disabilities, dementia, and traumatic brain injury.

Capacity assessments are likely to become increasingly important in light of research conducted by the United States Census Bureau (2000). Cea and Fisher (2003) predicted that there will be more people over the age of 65 than under the age of 15 by the year 2030. The number of people in the United States aged 65 and older increased by 12% between 1990 and 2000. The likelihood of developing severe cognitive impairments as a result of dementia increases with age (Birren, Sloane, & Cohen, 1992). In addition, some older adults experience a higher incidence of mental health concerns as well as medical illness (Cockerham, 1997; Zarit & Knight, 1996). The complex ethical issues related to informed consent and capacity will be focused increasingly on older persons (Orel, 1998).

Capacity Versus Competency

Capacity is a state and not a trait. An individual's capacity can vary over time. A person with florid psychosis may lack capacity until antipsychotic medication causes the symptoms of mental illness to go into remission. There is also a task-specific quality of capacity. A person with mental retardation may be found capable of executing a health care proxy but may not have the capacity to give informed consent for high-risk surgery to remove a brain tumor. The capacity standard for executing a simple health care proxy is less demanding than the capacity standard for giving an advanced directive or for giving consent for complex and risky elective medical treatment. Although an individual with mental retardation may be capable of giving informed consent for a simple medical procedure (e.g., taking sleep medication for insomnia), the risks and benefits of a complex medical procedure (e.g., organ transplant surgery) may be beyond that individual's understanding. Capacity is specific to the decision at hand; and it is not global (Carney et al., 2001; Howe, 2001). Capacity is a clinical concept that includes an individual's rationality, knowledge, and voluntariness.

Historically, competency has been considered to be a judicial determination by a court that a person has the ability to make a decision (Carney et al., 2001). The term competency has historically been associated with judicial determinations concerning a person's ability to make decisions with respect to his or her person and property. With the 1992 recodification of New York State Mental Hygiene Law (Article 81), the New York State legislature abandoned the term incompetency and instead adopted the term incapacity to refer to limitations in a person's functional level.

A person with cognitive impairments may be capable of making certain decisions if needed supports are present. Such supports include patient, slow, and repeated communication with familiar and trusted people (e.g., family, staff) in ways that enhance the person's understanding of the potential risks and benefits of the decision at hand as well as understanding of an alternative. Without those kinds of supports, the person may not be capable of making certain decisions.

The following vignette may clarify some of the issues raised in the prior paragraph. Barbara (a pseudonym) was a 22-year-old female with mild mental retardation who received residential services through the Center for Disability Services in the Albany, NY, area. Her father, with whom she had a good relationship, lived over 150 miles away. He arrived at her residence in the company of an attorney, with whom Barbara was unfamiliar. The father hurriedly pressured Barbara to sign a health care proxy document, even to the extent of using hand-over-hand physical guidance for the signing, despite the fact that she was crying and showing confusion. That health care proxy document was invalid on more than one count. It was not clear that Barbara understood what she was doing, and there was undue influence, which compromised the voluntariness of her act.

Little Consensus

There is little current consensus concerning the definition of capacity or about standards for its determination (Cea & Fisher, 2003; Krynski, Tymchuk, & Ouslander, 1994; Orel, 1998). The growing volume of literature concerning capacity to give informed consent for various procedures still has not resulted in a widely accepted capacity standard. However, legal and ethical codes urge professionals to respect the basic rights of people by not taking the position that a disability automatically renders them incapable (Casasanto, Simian, & Roman, 2003; Cea & Fisher, 2003). The President's Commission for the Study of Ethical Problems in Medicine and Biomedical Research (1982) advocated that professionals avoid deciding whether an individual has the capacity to make health-care decisions simply on the basis of his or her status as having a mental disability.

Importance of Capacity Assessment

A capacity assessment identifies those who can make voluntary decisions that must be accepted by others from those whose decisions are set aside and for whom someone else will function as a surrogate decision-maker (Carney et al., 2001). The principle of patient autonomy stems from the belief that every capable adult has the right to accept or refuse medical treatment (Carney et al., 2001).

Capacity assessments reduce two types of mistakes: preventing capable persons from deciding on their own treatment and not protecting incapable persons from the untoward results of making decisions beyond their ability (President's Commission, 1982). Capacity refers to a person's ability to make a specific decision at a given point in time and under specifically detailed conditions (Carney et al., 2001).

Methods for Determining Capacity

The two commonly used methods for determining capacity are a clinical assessment by a qualified health care professional (psychiatrists, psychologists, and physicians are generally recognized) or a decision through a court of law via evidence and expert opinion (Stratton et al., 1999). The clinical assessment method is less expensive, more easily available, and less time-consuming to use. It is important to note that some health care professionals, despite having the requisite experience and credentials, have often shown devaluing behavior toward certain people with disabilities. Such biased professionals should not be in the pool of potential capacity assessors.

It is important to realize that there is not always a choice about which method for determining capacity will be used. In some cases clinical assessments of capacity cannot be substituted for judicial determinations. For example, if a psychiatric facility wants to override an involuntarily confined patient's objection to psychotropic medications, there must be a judicial determination that the patient lacks capacity followed by a best interests determination. The New York State Court of Appeals in Rivers v. Katz (1986) stated that the determination of capacity is a “uniquely judicial function.”

Questionable Capacity of Those With Cognitive Impairments

Whether persons with cognitive impairments may provide informed consent depends upon their capacity (Orel, 1998). Even a ward with a legal guardian can have capacity to give informed consent for specific procedures. Consider the following case: An individual who had a legal guardian with the authority to make health care decisions was assessed by a licensed psychologist and found capable of giving informed consent for surgical insertion of an abdominal feeding tube. Although the ward's guardian wanted the procedure to be done, the ward refused. If the ward and the guardian remained at loggerheads, neither could have automatically prevailed over the other's desire. This kind of conflict may need to be resolved via a judicial proceeding (Doyle, 2002). A legal advocate for the ward could even seek to have the guardianship overturned, based on the guardian's unreasonable disregard of the ward's decision-making capacity. In New York State, a guardian should make medical decisions in accordance with the ward's wishes (New York State Codes, 1995; Mental Hygiene Law, 1992 ,New York State Surrogate's Court Procedure Act, 2004).

The Supreme Court of New Jersey in the ruling of In Re Conroy (1985) opined that even in the case of a person for whom a guardian has previously been appointed, there must be a determination as to whether the person is incompetent to make the decision at hand.

There has been increasing recognition that persons with cognitive impairments have the same constitutional rights as those without disabilities. For example, the American Association on Mental Retardation has advocated against unnecessary guardianships (Dinerstein et al., 1999).

The New York State Legislature has clearly indicated that decision-making authority by the guardian of a person with mental retardation should not infringe on the ward's right to make decisions where he or she is capable (McKinney's Session Laws of New York State 1990, chapter 516).

Beyond New York State

In its 1990 decision in Cruzan v. Missouri Department of Health, the United States Supreme Court held that a state could require clear and convincing evidence of a person's wishes to be shown in order to allow close family members to make decisions for the person with incapacity. In the years following Cruzan, every state enacted legislation that allowed their citizens to use a health care proxy (English, 2001; Mazzeo, 2002). Thus, in any jurisdiction the threshold question with respect to the utility of a health care proxy or an advance directive would be whether the person has the capacity to execute a health care proxy.

New York State's restrictions on advanced directives for a health care proxy concerning nourishment and hydration are more restrictive than is the case in most other states. Health care proxy agents have much latitude in the majority of states. In some states an appointed guardian, who is unfamiliar with the ward, has greater latitude in health care decision-making than does a health care proxy agent in New York State.

Under Pennsylvania's futile care policy, people with labels such as “persistent vegetative state” or “minimally conscious state” will only be given comfort care in an intensive care unit unless there is an advanced directive or a health care proxy that specifies otherwise. A futile care policy, such as the one adopted at the University of Pennsylvania Hospital, may in some cases prevail over both a living will and a health care proxy (Burling, 2002).

In California, there are general conservatorships of the person, which assume global incapacity, and limited conservatorships of persons with developmental disabilities. Some details of a specific situation follow. A California father served as his adult son's limited conservator of the person. The son's measured IQ was 40. The father gave written informed consent for his adult son's medical treatment. However, under California law, there are some medical decisions (e.g., psychosurgery) that cannot be made by a limited conservator without court approval.

New York Surrogate's Court Procedure Act Section 1750-b

There has been a question as to whether New York Surrogate's Court Procedure Act Section 1750-b is potentially flawed. The issue is that it contains a lower standard for guardians of people with mental retardation to withhold or withdraw life-sustaining treatment than for guardians or surrogate decision-makers for people who do not have mental retardation. The matter can be reframed as a possible violation of the equal protection or due process rights of persons with mental retardation. The statute has been subject to a constitutional challenge in Matter of Chantel R (SCPA Article 17-A, Chantel, 2004) and was determined to be constitutional. The Court in that case noted that

because mentally retarded persons are often incompetent to manage their affairs, let alone express their preferences with “clear and convincing” evidence, the case law effectively deprived them of the opportunity to refuse intrusive life-sustaining procedures even where their physicians and caregivers advocated otherwise.

In this case Chantel, the person with mental retardation, who was the subject of the proceeding did not object to the appointment of her mother as her guardian but objected to her mother as guardian having the authority to withhold or withdraw life-sustaining treatment under 1750-b. The Court found that Chantel lacked the capacity to make a knowing and informed objection and empowered the mother as guardian to make decisions with respect to life-sustaining treatment. The Court held that Chantel's objection was not a competent one. Chantel's representative argued that the objection did not have to be a “competent one” because such a test was never applied under the common law. Under the common law, the test was the validity only of a person's expressions of a wish to refuse life-sustaining treatment, not to receive it (O' Connor, 1988).

The Matter of Chantel R is on appeal in the New York State Appellate Division, First Department. The basis of the constitutional challenge on appeal is not whether the state legislature could codify a substituted judgment standard for persons who have always been incompetent. Rather, the issue as stated in appellant's brief, is

whether equal protection is violated by evaluating the validity of a mentally retarded person's expressions of a desire to be kept alive when at common law the expressed wishes to live of all others would be taken at face value.

Also briefed is a facial constitutional challenge to the “extraordinary burden” standard codified in New York State's Surrogate's Court Procedure Act Section 1750-b (2003). The argument with respect to “extraordinary burden” is that it is a constitutionally vague standard, which can be subject to various interpretations and, thus, violates due process.

An inconsistency in New York State's Surrogate's Court Procedure Act Section 1750-b concerns plenary guardianship (SCPA, Article 17-A, 2003). That law could be interpreted to indicate that a person who already has a plenary guardian may not be assessed and found capable of executing a health care proxy. According to that law, a potential ward must receive a capacity evaluation concerning ability to make health care decisions. Yet there is no allowance made for the fact that a person with mental retardation may have the capacity to make some simple health care decisions (e.g., getting a flu shot) but may lack capacity for more complex decisions (e.g., risky elective surgery for which there are conflicting expert medical opinions). The New York State application for plenary guardianship requires that a licensed psychologist or physician must complete an affidavit stating that the potential ward is incapable of managing himself or herself and/or managing his or her affairs. This flies in the face of the fact that there are wards who, despite having plenary guardians, can be shown via clinical assessment to have various capacities (e.g., for a sexual relationship, to execute a power of attorney).

The Health Care Proxy

A health care proxy is a document by which a person (a principal) names another person (an agent) to have authority to make health care decisions for him or her when he or she becomes incapable of making such decisions for himself or herself. The principal may revoke the health care proxy, or change agents, at any time. This is consistent with the principle that people with mental retardation should have the option to change their mind regarding their end-of-life wishes (Last Passages Project Resources, 2005).

In New York State, a simple health care proxy does not cover end-of-life decisions or advanced directives (e.g., to accept or refuse nourishment or hydration through tube feeding). The appropriate form for a simple health care proxy may vary from one jurisdiction to another. A valid health care proxy form for New York State can be accessed via the New York State Department of Health (see References); this form is equivalent to the health care proxy form on the New York State Department of Health website with references to advanced directives deleted.

In order to execute a health care proxy, the principal must have reached the age of majority (i.e., 18 years of age in New York State) or be married or a parent. The agent may make any and all health care decisions on the principal's behalf that the principal could make if he or she had capacity. In addition to an assessment of capacity to execute a simple health care proxy, the principal may receive an additional capacity assessment regarding decision-making ability to give specific advanced directives. An advanced directive capacity assessment is focused on the risks, benefits, and alternatives for the advanced directive being considered.

The agent's authority may be limited by specific instructions or advanced directives, if given by a principal who has been assessed and found capable of giving those instructions or specific advanced directives. Such a capable principal may have his or her wishes regarding specific health care decisions written into the health care proxy. For example, a capable principal may give an agent authority to refuse nourishment and hydration provided by a feeding tube, which is an advanced directive. However, the principal may simply appoint the agent and trust that the agent will make all health care decisions in accordance with the principal's wishes, if known, or in the principal's best interest.

Examples of other procedures in New York for which a principal may have advanced directives written in the health care proxy include cardiopulmonary resuscitation; pain medication; blood transfusions; chemotherapy; artificial respiration; and withdrawal of life support (Office of Mental Retardation and Developmental Disabilities, 2004). An agent will have authority to refuse nourishment and water provided by a feeding tube only if the principal indicated a wish to refuse nourishment and water provided by a feeding tube.

Advantages of the Health Care Proxy

The health care proxy provides assurance that if the principal becomes incapable of making health care decisions, his or her previously expressed wishes concerning health care decisions will be honored. In simpler terms, physicians will do what an incapacitated principal has requested through the health care proxy.

When there is no health care proxy, and no guardian, there may be delays in securing health care treatments. Although no informed consent is needed for emergency treatment, there are health care conditions where delay in treatment would be detrimental (e.g., aggressive but treatable cancer, respiratory difficulties for which a tracheostomy could be performed to replace an endotracheal tube). A surrogate decision-maker may need to be identified in such cases.

In the case of a person in New York State who has no guardian, the health care proxy may allow more expeditious access to health care treatment. When there is a health care proxy, there is no requirement for review of proposed health care treatment by an outside source (e.g., the judiciary).

In New York State, a guardian authorizes proposed health care treatment for a ward with mental retardation who has no health care proxy. The guardian is free to make health care decisions for the ward without seeking court approval and without giving notice to the Mental Hygiene Legal Services agency. Mental Hygiene Legal Services is a New York State agency staffed mainly with attorneys whose mission is to protect the rights of persons with mental retardation or another developmental disability or mental illness. Mental Hygiene Legal Services has the authority to object to a guardian's health care end-of-life decisions, even in the case of a corporate guardian. This is illustrated in the vignette in the next paragraph.

Cathy (a pseudonym), a 50-year-old female, was on a ventilator in the intensive care unit of a hospital in Albany, NY. She had Down syndrome and advanced dementia. Her physical status was very deteriorated; and she seemed near death. She lacked capacity to give or refuse consent for life-sustaining medical procedures. Unfortunately, she did not have a health care proxy. Her mother stated that several years earlier, Cathy indicated that she would not want to receive artificial respiration in a situation like her current one. In the past Cathy may have had the capacity to execute a health care proxy and to give some advanced directives. The medical director of the Center for Disability Services, Cathy's residential provider agency, as well as a physician on staff at the hospital, agreed that her quality of life was very poor and was not likely to improve. New York State law does not allow a hospital to remove the ventilator in a case like this because that was considered likely to result in the patient's death. If Cathy had a health care proxy, and had given an advanced directive that she did not want artificial respiration, then the ventilator would not have been used. While Cathy clung to life in the intensive care unit, the local Surrogate's Court judge used an accelerated proceeding to issue a decree of guardianship, which named Cathy's sister as her guardian. The sister, thus empowered with authority as a guardian, then instructed the hospital to remove the ventilator. Mental Hygiene Legal Services objected because the removal was considered likely to result in Cathy's death. Consequently, implementation of the ventilator removal order was delayed until after the legal issues were resolved. Eventually, the ventilator was removed. Surprisingly, Cathy did not die; and, happily, she has actually been showing steady improvements.

A plenary guardian is referred to as an Article 17-A guardian in New York State, and when there is an objection to an Article 17-A guardian's decision in the case of life-sustaining treatment, then a judicial resolution of the matter is mandatory (SPCA, § 1750-b [6]). Notice of the guardian's decision to withhold or withdraw life-sustaining treatment must be given to Mental Hygiene Legal Services when the ward is a person with mental retardation who receives residential services from an agency certified by the New York State Office of Mental Retardation and Developmental Disabilities.

Some Risks Associated With a Health Care Proxy

There is a possibility that an agent will not follow the principal's previously expressed wishes concerning health care decisions. If the agent would benefit in some way (e.g., financially) from the principal's death, the agent could be tempted to make health care decisions that hasten the principal's death. There are also cases of parents who do not want their adult child with a disability to outlive them because they believe that others will not take proper care of their adult child. An aged parent, who has guardianship authority, may become tired of the burden of caring for an adult child with a disability and that guardian may decide not to allow life-sustaining medical interventions.

Possible Consequences of Not Having a Health Care Proxy

A variation on a vignette presented earlier may help to illustrate possible consequences of not having a health care proxy. If the case of Cathy did not involve the appointment of a guardian, then the hospital may have been legally required to continue the use of a ventilator for an indeterminate period of time. This would have been contrary to Cathy's previously expressed wishes.

Creating the Health Care Proxy

The principal must sign and date the health care proxy in the presence of two adult witnesses who must also sign it. Neither witness may be the agent. The creation of a health care proxy is a personal act by the principal. A guardian may not execute a health care proxy for a ward.

In the case of a person with mental retardation who receives residential services from an agency that operates under the auspices of the New York State Office of Mental Retardation and Developmental Disabilities, there are special regulations that apply. At least one witness must not be affiliated with the agency that provides residential services to the principal (e.g., not be an employee, officer, or board member of the agency). In addition, at least one witness must be a New York State licensed physician or licensed psychologist who satisfies one of the following conditions: (a) is employed by a New York State Developmental Disabilities Service Office or has worked at least 2 years in a mental retardation or another developmental disability certified facility, (b) has specialized training and 2 year's experience serving persons with mental retardation or developmental disabilities; or (c) has at least 3 year's experience serving persons with mental retardation or another developmental disability (New York State Codes, Rules and Regulations, 1995; Office of Mental Retardation and Developmental Disabilities, 2004).

If the principal is unable to sign, he or she may ask another person to sign and date the health care proxy for him/her in the presence of the two adult witnesses. In this case the witnesses must also sign the health care proxy and state that the principal appeared to execute the proxy willingly and free from undue influence.

The health care proxy remains effective until revoked by the principal. The principal may revoke a health care proxy by notifying an agent or health care provider, or by any act indicating a desire to revoke the health care proxy, or by creating a subsequent health care proxy. If an individual with cognitive impairments wants to revoke a prior health care proxy, the previous assessment of capacity should be reviewed; and, possibly, a re-assessment may be needed. Factors that enter into determining the need for a re-assessment include the individual's current mental status, level of agitation, and medication changes (Kalachnik, 1998, 1999).

Selection of an Agent

In New York State there are special regulations that apply to persons with mental retardation who receive residential services from an agency certified by the New York State Office of Mental Retardation and Developmental Disabilities. It is important that planning for end-of-life care should begin well before a person becomes terminally ill (Last Passages Project Resources, 2005). Therefore, it is suggested that persons with mental retardation who are about to be admitted to residential services receive an evaluation of capacity to execute a health care proxy. Each person with mental retardation who is found capable should be encouraged to do so. Ideally, the agent would be a parent, a guardian, or another actively involved family member.

An impediment to executing a health care proxy exists when there is no willing relative or trusted friend who the principal could select as an agent. In such a case an advocate, or residential provider, could attempt to establish a trusting relationship between the principal and a potential agent (e.g., a family member of a housemate of the principal).

A principal with mental retardation might select as a potential agent a person with cognitive impairments (e.g., a peer in a residential facility). If the potential agent lacks capacity to give informed consent for complex medical procedures, then selection of that person would not be valid. In such a case, the principal may benefit from supportive guidance from staff in order to make a valid selection.

Activation of the Health Care Proxy

When it is ascertained that the principal lacks capacity to make health care decisions, the agent's authority begins. The attending physician reaches that conclusion. It must be in writing and must specify the cause, nature, extent, and likely duration of the principal's incapacity. If the cause is mental retardation or a developmental disability, a licensed physician or licensed psychologist who has had specialized training or experience identified earlier must be involved in the process of ascertaining the incapacity (Office of Mental Retardation and Developmental Disabilities, 2004). A tool, or standard, that physicians and psychologists can use in determining whether a person lacks capacity to make a health care decision is presented in Lyden and Peters (2004).

In a situation where a principal objects to a clinical determination that he or she lacks capacity to make health care decisions, the principal's objection prevails unless there is a judicial determination that he or she lacks capacity to make health care decisions.

Individualizing the Assessment

Psychologists and physicians should adapt or individualize the capacity assessment process with specific individuals. Appropriate adjustments need to be made for persons with traumatic brain injury (e.g., use recognition rather than recall memory tasks), impaired speech, and/or sensory or motor deficiencies. Assessors should provide relevant information in a manner consistent with the individual's reading level and level of intellectual functioning. A family member or caretaker may be skilled in presenting questions and information in ways that are understandable to the individual. Ideally, the assessment should be a collaborative effort between the primary clinical assessor and others who are well-versed in understanding the individual's method of communication (Lyden & Peters, 2004).

It may help if the assessor uses alternative methods to present information. For example, there could be modified word choices for the mental status memory task via the available communication device. Also, information should be presented in ways that accommodate visual or hearing limitations (Orel, 1998; Proctor, 1995; Storandt, 1994). The individual may need to be allowed to review the information for longer time periods. The assessor should encourage questions. An assessor may not agree with the assessed individual's choices, but the individual's wishes concerning the issue at hand would still need to be respected if he or she were found to exhibit capacity.

A Standard for Assessing Capacity to Execute a Health Care Proxy

A capacity evaluation must be a yes or no determination with regard to the decision at hand. That is, a person is either found to be capable or not capable (Lyden & Peters, 2004). In conducting a capacity assessment procedure, the examiner should consider an individual's degree of rationality about the proposed action, his or her knowledge concerning the proposed procedure, and whether the person's decision is voluntary. The law has recognized these three elements to constitute legally sufficient consent (Stavis, 1991; Sundram & Stavis, 1994).

The assessment should be based on a person's optimal cognitive functioning. The time, place, and circumstances of the assessment should be geared to minimize undue anxiety and distraction while maximizing cooperative and alert responding. This is consistent with the key point made earlier that a person with cognitive impairments may be capable of making certain decisions if needed supports are present.

Assessing Rationality

Rationality is the ability to critically evaluate, to weigh the pros and cons, and to make a knowledgeable decision. In order to assess the level of an individual's rationality, there are several factors that should be examined. Any and all diagnosed neurological, psychiatric, or medical conditions that may impair the individual's judgment, perception, or thinking (e.g., dementia, schizophrenia, medication side effects, traumatic brain injury, drug intoxication) should be considered.

If an individual's rationality is temporarily impaired, the capacity assessment should be postponed until the impairment has remitted. Some examples follow.

  1. If a person's responses to assessment items are clouded by interfering delusional statements, the assessment should be re-presented at a later time when the person can respond in a more focused and relevant manner.

  2. A person may repeatedly interrupt the assessment process with irrelevant questions (e.g., “Can I leave now?” “When will we be finished?”), suggesting that there are distracting preoccupations that are interfering with adequate attention to the items being presented. The assessment may have to be rescheduled so as to provide circumstances that tend to optimize the person's responsiveness.

This illustrates the adapting or individualizing of the capacity assessment with specific individuals.

The individual's level of intelligence is very relevant. When the IQ is above 79 (i.e., intelligence that is low average or higher), and there are no health impairments that might compromise mental status (e.g., dementia), the individual probably has capacity. However, if there are indications of a potential mental status impairment, then a mini-mental status exam, including orientation and memory items, should be administered. If significant mental status impairments are found, there should be an assessment of knowledge and voluntariness.

If an individual's IQ is below 40 (i.e., intelligence that is at or below the level of severe mental retardation), that person probably lacks capacity. However, if an individual with an IQ below 40 has sufficient communication skills to allow a mini-mental status exam, and the results show that there is adequate orientation and memory, then the assessment of knowledge and voluntariness should also be done. All persons with mental retardation should be afforded an opportunity to make decisions about their lives.

An individual whose IQ is between 39 and 80 needs a thorough capacity assessment, including a mini-mental status exam and an evaluation of the individual's relevant knowledge and voluntariness (Lyden & Peters, 2004).

There are medical conditions for which the recommended treatment, and alternatives to treatment, is very complex and difficult to weigh. Even a person who has average intelligence may become confused and indecisive in some situations. For example, a person with uncontrolled seizures whose locus is diffuse may be confronted with conflicting expert medical opinions as to the advisability of brain surgery to eliminate seizures. Another issue to be considered is whether a physician is recommending a medical intervention for self-serving reasons rather than for the patient's best interest.

Assessing Knowledge

There are three knowledge criteria the principal must satisfy:

  1. The principal must show understanding that he or she is giving another person (i.e., the agent) authority to make health care decisions on his or her behalf if he or she becomes incapable of making such decisions for himself or herself.

  2. The choice of agent must make sense and not be arbitrary (e.g., a trusted relative, a familiar person who has the capacity to make health care decisions).

  3. The principal has to demonstrate understanding that he or she has the right to revoke or change the health care proxy (Mental Hygiene Regulations, 1995).

Abstract thinking ability is required to consider future circumstances in which one is incapable of making decisions for one's self or when one may need to change agents. Some individuals may find it stressful to be asked to consider such circumstances; and they may try to avoid talking about it (e.g., “I'm not going to be sick.” “I won't have to go to the hospital.” “My mother is not going to die.”). If this were to occur, then spaced education and training that includes graduated exposure to the key concepts may be helpful prior to the next attempt at assessing capacity. This would be a way of adapting and individualizing the assessment with specific individuals.

Assessing Voluntariness

The presence of coercion, duress, or undue influence in this matter could render a person incapable of executing a health care proxy. Unwillingness, inability, or ambivalence with regard to expressing a choice would compromise voluntariness (Moye, Karel, Azar, & Gurrera, 2004).

To determine whether voluntariness exists, it can be helpful to obtain information from files or records of recent years compiled by providers of residential and day program services. Conversations with staff who currently provide services to the person as well as direct discussions with the individual are also essential. It is important to find out if any person of influence (e.g., a relative, a service provider, a physician) has spoken to the person and urged a particular course of action. If there is evidence of such influence, there must be an evaluation of the person's ability to make a free choice, even if it is opposite to what was recommended by a person of influence. If there are impairments to an individual's voluntariness, these should be carefully examined with a view toward removing the impairments and promoting the individual's self-determination and independence.

Final Determination of Capacity

Insufficiency in rationality, knowledge, or voluntariness may result in a determination of incapacity. Some deficits (e.g., advanced dementia) may not be easily remediated, but other deficits may be subject to remediation. A thought disturbance, such as paranoia or delusions, may impair rationality until antipsychotic medication improves the person's mental status. If a person with mild mental retardation was found insufficient in the domain of knowledge, appropriate training may enable that person to learn what is necessary to be deemed capable. In the case of a person whose voluntariness has been compromised by an authority figure, it may be possible to decrease or limit the undue influence sufficiently to elevate the person's decision-making from the level of incapacity to the level of capacity.

Discussion

Although there are some legal guidelines for determining capacity, there has been a paucity of clinical standards. In this article I presented a standard for evaluating capacity to execute a health care proxy. There are many individuals with cognitive impairments who have capacity to execute a health care proxy, but who lack decision-making capability regarding proposed complex medical treatments.

The use of a clinical standard for assessing capacity helps afford respect for individual dignity and autonomy in compliance with legal regulations as well as “Principle E: Respect for People's Rights and Dignity” of the American Psychological Association's (2002) Code of Ethics and Rules of Professional Conduct. Ethical and moral codes dictate that reasonable efforts should be made to include individuals in decisions affecting their lives in order to avoid possible victimization.

The Center on Human Policy at Syracuse University (n.d.) has proposed “A Statement of Common Principles on Life-Sustaining Care and Treatment of People With Disabilities.” The principles affirm the fundamental human, civil, and constitutional rights of all people, including the rights of persons with disabilities to life-sustaining treatment and to self-determination. Over 30 disability advocacy and rights organizations have formally endorsed this statement.

Biased attitudes toward people with severe intellectual disabilities are common in our society. In their decisions, health care professionals and surrogates may sometimes fail to adequately take into account the thoughts, feelings, and wishes of persons with severe intellectual disabilities. This unfortunate situation argues in favor of carefully done capacity evaluations.

References

References
American Psychological Association.
2002
.
Ethical principles of psychologists and code of conduct.
American Psychologist
57
:
1060
1073
.
Appelbaum
,
P. S.
and
L. H.
Roth
.
1982
.
Competency to consent to research: A psychiatric overview.
Archives of General Psychiatry
39
:
951
958
.
Birren
,
J. E.
,
B.
Sloane
, and
G. D.
Cohen
. (
Eds.
).
(1992
.
Handbook of mental health and aging (2nd ed).
New York: Academic Press
.
Burling
,
S.
2002, November 4
.
Penn hospital to limit its care in futile cases.
Philadelphia Inquirer, p. 3
.
Carney
,
M. T.
,
J.
Neugroschl
,
R. S.
Morrison
,
D.
Marin
, and
A. L.
Siu
.
2001
.
The development and piloting of a capacity assessment tool.
Journal of Clinical Ethics
12
:
17
23
.
Casasanto
,
M.
,
M.
Simian
, and
J.
Roman
.
n.d.
.
A model code of ethics for guardians.
Retrieved March 9, 2003, from the National Guardianship Association website: http://www.guardianship.org/whatis/index.htm
.
Cea
,
C. D.
and
C. B.
Fisher
.
2003
.
Health care decision-making by adults with mental retardation.
Mental Retardation
41
:
78
87
.
Center on Human Policy.
n.d.
.
A statement of common principles on life-sustaining care and treatment of people with disabilities.
Retrieved February 2, 2006, from http://thechp.syr.edu/ endorse/
.
Chantel R, 6 Misc 3d 693, 791 N.Y.S. 2nd 324, N.Y. Slip Op. 24533 (2004)
.
Conroy, 98 NJ 321; 486 A. 2d 1209 (1985)
.
Cruzan v. Missouri Department of Health, 497 U.S. 261 (1990)
.
Dinerstein
,
R.
,
S.
Herr
, and
J.
O'Sullivan
. (
Eds.
).
(1999
.
A guide to consent.
Washington, DC: American Association on Mental Retardation
.
Doyle
,
C.
2002, June
.
Guardianship.
Workshop presented at the Albany Law School Institute of Legal Studies Disability Law Day Conference, Albany, New York
.
English
,
D.
2001, May/June
.
The uniform health care decisions act and its progress in the states.
Probate and Property, 19, 19
.
Howe
,
E. G.
2001
.
How to determine competency.
Journal of Clinical Ethics
12
:
3
16
.
Kalachnik
,
J. E.
1999
.
Informed consent.
In J. E. Kalachnik (Ed.), Handbook of psychopharmacologic medication monitoring (pp. 128–135). Columbia, SC: Kalachnik Consulting
.
Kalachnik
,
J. E.
,
B. L.
Leventhal
,
D. H.
James
,
R.
Sovner
,
T. A.
Kastner
, and
K.
Walsh
.
et al
.
(1998
.
Guidelines for the use of medicine to treat psychiatric disorder.
In S. Reiss & M. G. Aman (Eds.), Medicine to treat psychiatric disorder and developmental disabilities: The international consensus handbook (pp. 45–72). Columbus: Ohio State University, Nisonger Center
.
Krynski
,
M.
,
A.
Tymchuk
, and
J.
Ouslander
.
1994
.
How informed can consent be? New lights on comprehension among elderly people making decisions about enteral tube feeding.
Gerontologist
34
:
36
43
.
LaRue
,
A.
and
T.
Markee
.
1995
.
Clinical assessment research with older adults.
Psychological Assessment
7
:
376
386
.
Last Passages Project Resources.
2005, November 2
.
End-of-life care for people with developmental disabilities: Philosophy and recommendations.
Journal of Religion, Disability & Health
9
:
91
95
.
Lyden
,
M.
and
M.
Peters
.
2004
.
Assessing capacity for informed consent: A rationale and protocol.
Mental Health Aspects of Developmental Disabilities
7
:
97
106
.
Mazzeo
,
K.
2002
.
The right to die versus the right to live—Who decides? The long and wandering road to a legislative solution.
Albany Law Review
263
:
1
19
.
McKinney's Session Laws of New York State, Laws of 1990
1990
.
Chapter 516. St. Paul, MN: West Publishing
.
Moye
,
J.
,
M.
Karel
,
A.
Azar
, and
J.
Gurrera
.
2004
.
Capacity to consent to treatment: Empirical comparison of three instruments in older adults with and without dementia.
The Gerontologist
2
:
166
175
.
New York State Codes, Rules and Regulations, Mental Hygiene Regulations.
1995, January 1
.
XIV, § 633. 20 Title XIV. Albany: New York State
.
New York State Department of Health.
Valid health care proxy form.
.
New York State Mental Hygiene Law, Article 81 (1992) recodification (81.22 [a][8])
.
New York State Surrogate's Court Procedure Act, Article 17–A.
February 2004
.
[SCPA] 1750-b [2][a])
.
O' Connor, 72 NY 2d 517 (1988)
.
Office of Mental Retardation and Developmental Disabilities.
February 2004
.
Health care choices: who can decide?
Albany: Author. Available from www.omr.state.ny.us
.
Orel
,
N.
1998
.
Ethical considerations in assessing the competency of older adults: A provision of informed consent.
Journal of Mental Health Counseling
20
:
189
202
.
President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research.
1982
.
Making health care decisions (Vol. 1).
Washington, DC: U.S. Government Printing Office
.
Proctor
,
A. W.
1995
.
Ethical issues in research with dementia patients: A neuroscience perspective.
International Journal of Geriatric Psychiatry
10
:
653
654
.
Rivers v. Katz, 495 N.E.2d 337, 504 N.Y.S. 2d 74, 67 N.Y.2d 485 (1986)
.
Stavis
,
P.
1991, November/December
.
Sexual activity and the law of consent.
Quality Care Newsletter, Albany: New York State Commission on Quality of Care for the Mentally Disabled
.
Storandt
,
M.
1994
.
General principles of assessment of older adults.
In M. Storandt & G. R. VandenBos (Eds.), Neuropsychological assessment of dementia and depression in older adults: A clinician's guide (pp. 7–32). Washington, DC: American Psychological Association
.
Stratton
,
J.
,
R.
Bailly
,
J.
Meyer
,
H.
Baun
,
L.
Faulkner
,
A.
Silberman
, and
B.
Sanchez
.
1999, October
.
A practical guide to making decisions for persons with developmental and age-related disabilities: The challenges of sexuality, housing and health care.
Manual presented at the Albany Law School Institute of Legal Studies Continuing Education Conference. Albany, New York
.
Sundram
,
C.
and
P.
Stavis
.
1994
.
Sexuality and intellectual disabilities.
Mental Retardation
32
:
255
264
.
United States Census Bureau.
2000
.
Statistical abstract of the United States.
Washington, DC: U.S. Government Printing Office
.
Zarit
,
S. H.
and
B. G.
Knight
. (
Eds.
).
1996
.
A guide to psychotherapy and aging: Effective clinical interventions in a life-stage context.
Washington, DC: American Psychological Association
.

The author is grateful to Sheila Shea and Stanley Segal for their valuable information and suggestions.

Author notes

Author: Martin Lyden, PhD (lyden@cftd.org), Director, Psychology Department Residential Division, Center for Disability Services, 3 Cedar St. Extension, Cohoes, NY 12047