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Ethical dilemmas in adult guardianship and substitute decision-making: consideration for rehabilitation professionals.

Guardianship for adults with disabilities is a relatively new issue for rehabilitation and related human service professionals. A review of the literature in rehabilitation suggests there is very little written in the area of guardianship. The literature on guardianship has tended to consist primarily of descriptive studies in the medical and law review journals.

During the late 1970's, many states enacted or re-wrote legislation establishing laws governing a person's competency and the appointment of a substitute or surrogate decision-maker (Casasanto, Simon, & Roman, 1991). While the court appointed guardian can act as a protective mechanism for the person with a psychiatric, neurological or other mental disability, they may act in ways which restrict the person's right to choose where they want to live, work, the type of medical treatment they will receive, and how their money shall be managed. Depending on the type of guardianship, some individuals may relinquish most, if not all of their autonomy in making their own decisions. Hence, the imposition of guardianship constitutes a major infringement of a person's civil rights (Scogin & Perry, 1986).

It is critical to understand the legal and ethical principles that occur during substitute decision-making, or the ward-guardian relationship. Unavoidably, ethical dilemmas can occur when the guardian uses their own set of philosophical and moral beliefs to make a substitute decision (Veatch, 1986). As a result, one or more ethical principles may be compromised.

To examine more fully the ethical issues involved in the process of adult guardianship, this article will define more clearly the concepts of guardianship, competency, informed consent, and substitute decision-making. Further, it is critical that the human service professional, as well as the legally appointed substitute decision-maker, recognize when an ethical dilemma can occur and how the ethical principles of beneficence, autonomy, and nonmaleficence can guide the behavior of the court-appointed guardian. Generally, rehabilitation counselors have a strong tendency to favor behaviors that are beneficent and nonmaleficent over those that foster autonomy (Howie, Gatens-Robinson, & Rubin, 1992). However, when a person's autonomy becomes compromised, the services being provided to them are at risk of becoming overprotective services. The rehabilitation counselor or guardian may act in ways to promote their own personal agenda rather than furthering the interests of their client's welfare.

Building a Conceptual Framework

There are five basic assumptions about guardianship which are commonly recognized in the literature (Apolloni & Cooke, 1984; Casasanto, et al., 1991; Christie, 1984; Veatch, 1986).

The first assumption is that persons with severe and chronic cognitive/mental disabilities who allegedly are not competent to make their own treatment choices, can benefit from a legally appointed substitute decision-maker to make appropriate choices for them. The court-appointed guardian can, in reality, serve to protect the ward from situations of alleged abuse, neglect, and exploitation.

The second assumption is that a responsible guardian will act in ways that promote the ward's welfare through beneficent actions, as substitute decisions are made. Also, by adhering to the ethical principles of autonomy, beneficence, and nonmaleficence, the guardian will not harm or impose risk of harm in decision-making situations which are perceived to be in the ward's best interest. Further, the legally appointed guardian will allow the ward to act autonomously in those areas not covered by the guardianship court order.

Thirdly, it is found that parents and family members who are appointed as guardians are held to the same standards of ethical behavior as non-family guardians, such as state and county guardianship programs. In reality, parents and family members are often given more latitude by society in general (Scogin & Perry, 1986; Veatch, 1986) in situations of substitute decision-making.

The fourth assumption is that as legal and ethical dilemmas arise in the ward-guardian relationship the National Guardianship Association's Model Code of Ethics (Casasanto, et al., 1991), as well as the ethical principles stated previously, will assist in the development of resolutions to those dilemmas. Finally, some of the literature reports less restrictive alternatives to guardianship such as: power of attorney, trust fund accounts, representative payee, or independent protective services (Saunders & Simon, 1987; Schmidt, 1984; and Wilker, 1991).

The Guardianship Process

Guardianship is a legal mechanism whereby a substitute decision-maker, (a person, institution, or agency) is appointed by the Probate Court to serve and act in the best interest of a person who lacks the capacity to manage their person, estate, or both (Apolloni & Cooke, 1984). Although the statutes of legal guardianship differ among states, the princess tends to follow a similar course and outcome (Bulcroft, Kielkopf, & Tripp, 1991).

Generally, the guardianship process begins with an interested family member filing a petition for guardianship. The court may then appoint a guardian in cases where a person is disabled because of (a) mental deterioration, (b) medical/physical incapacity, (c) mental illness, or (d) developmental disability (Apolloni & Cooke, 1984). The court must find the person who is allegedly incompetent lacks sufficient understanding or capacity to make or communicate responsible decisions concerning their care or financial affairs (Mozer & Chamberlin, 1985).

A guardian may be appointed by the probate to serve as either plenary, limited, or temporary guardian of the person, estate, or both. Under plenary guardianship, the guardian has full authority to make informed decisions for the ward. This type of guardianship should only be used when the person with a disability is so incapacitated that they truly cannot make any decisions on their own. In the past, the courts have primarily granted plenary (as opposed to limited) authority to guardians (Iris, 1990).

A less restrictive guardianship arrangement, grounded in the doctrine of "least restrictive alternative" (Iris, 1986), is limited guardianship. In this type of guardianship the guardian's decision-making authority is restricted as specified by the guardianship petition and court order. For example, the guardian may have decision-making authority for residential placement and medical treatment only. Hence, the ward retains their rights to make decisions in all other areas of their life, not cited in the petition and order. Despite general agreement with the concept of least restrictive alternative, limited guardianships are used very infrequently (Iris, 1986, Iris, 1990). Much of the bias against limited guardianships arise from misconceptions of their cost-benefit, lack of knowledge about the effect of cognitive incapacity on decision-making ability, and negative attitudes about the aging process and persons with cognitive or mental disabilities.

Temporary or emergency guardianships are time-limited and sometimes used when a specific emergency medical intervention, or emergency residential placement issue exists. Temporary guardianship should not be used to circumvent the wishes of the person who is allegedly disabled who may be perceived as noncompliant (Iris, 1990).

The person who is allegedly incompetent rarely plays a significant role in the guardianship process. These individuals generally do not attend hearings, nor are their voices often heard via legal representation (Bulcroft et al., 1991; Iris, 1990; Schmidt, 1984). Guardianship hearings are reported to be frequently one-sided, superficial, and typically take place in a relatively short period of time (Topolnicki, 1984; Wilker, 1991). It is not at all uncommon for a hearing to be completed within a few minutes. It is also reported that approximately 95% of all guardianship hearings result in the appointment of a guardian and usually as plenary guardian of the person (Bulcroft, et al., 1991).

Determining Competency

The lack of competency or capacity to make decisions for oneself must be legally determined by the courts before a person's autonomy or right to choose may be restricted or removed. In most states, a physician's report addressing a person's mental capacity is used during the guardianship proceeding to determine competency (Iris, 1990). The research suggests that guidelines for determining competency or the lack of competency are far from clear (Kutner, Ruark, & Raffin, 1991; Mebane & Rauch, 1990; Rabins & Mace, 1986). Although there are no widely accepted formal assessment instruments used for determining competency (Banja & Auerbach, 1989), the mental status examination typically utilized by physicians and psychiatrists is reported as being a useful framework for evaluating the cognitive dimensions that underlie competence (Searight, 1992). Although the standard mental status examination is commonly utilized in practice, this test by itself does not constitute a valid instrument for determining competency.

Difficulties do exist with the use of any type of formal or informal competency assessment (Appelbaum & Grisso, 1988). This is especially true when a person is being evaluated under crisis or emergency situation or in unfamiliar areas where the person has not had previous experience in exercising their judgement or reasoning skills. In addition, a person's competency may fluctuate with changes in their underlying medical, physical, psychological condition, or while they may be taking certain medications. It is important to consider that a person thought to be mentally or cognitively impaired may be competent in one or more life areas, but may lack substantial capacity in other areas (Apolloni & Cooke, 1984).

Oftentimes, a person's mental competency is questioned when they refuse medical treatment (Adams, Arnold, Siminoff, & Wolfson, 1992; Kutner, Ruark, & Raffin, 1992; Searight, 1992). Patients are more likely to be found incompetent in emergency situations where the patient refuses treatment or threatens to leave against medical advice (Jourdan & Glickman, 1991; Mebane & Rauch, 1990). Those patients who concur with physician's orders and recommendations are almost always presumed competent and evaluation of the patient's decision-making abilities are rarely sought (Farnsworth, 1990).

It is clear from the literature, that a psychiatric, neurological, or mental disability alone, is not evidence to support a finding of incompetence, just as a patient's irrational choices alone, cannot determine competence (Brock & Wartman, 1990). Appelbaum and Grisso (1988) suggest that competency assessment is an ongoing process in the physician-patient relationship and that the physician must continually educate their patients to assure competent understanding of the selected treatment.

During the last several years, the literature on the right to refuse generally accepted medical and mental health treatment has received growing attention. The research suggests some common areas to specifically address during a competency assessment (Appelbaum & Grisso, 1988; Roth, Meisel, & Lidz, 1977; Wear & Brahams, 1991). They are the person's: (a) knowledge that they have a choice to make, (b) ability to understand the available options and their advantages and disadvantages, (c) ability in communicating their choices, (d) ability to understand relevant information, with the absence of any interfering pathological perception or belief, such as a delusional system surrounding the decision, (e) absence of any interfering acute, crisis emotional state, (f) ability in manipulating information rationally, appreciating the situation and its consequences, and (g) awareness of how others in society view the decision made, and an understanding of the person's reasons for deviating from the recommended treatment.

Another approach to competency assessment includes evaluating the past history, and functional decision-making abilities of the person in all life areas, such as residential, vocational, and medical or mental health treatment choices (Christie, 1984; Saunders & Simon, 1987). Functional assessments provide for a more behavioral, observable approach in determining the level of competency the individual exhibits.

Although there are several conceptual frameworks available for evaluating the quality of a person's decision-making capacity, the following considerations are important in competency assessments and should include the following: (a) involvement of the person who is allegedly disabled, their family, and other professionals, (b) comprehensiveness in all life areas with emphasis on the person's decision-making strengths, and (c) ongoing assessment to determine the least restrictive type of guardianship, or if guardianship is appropriate at all.

Ethical Dilemmas Confronting Guardians and Rehabilitation Professionals

Many of the ethical dilemmas confronting the ward-guardian relationship are similar to the conflicts which arise during the client-rehabilitation professional relationship. There is a common ground by which decisions are made because each individual is influenced by their own personal moral values which ultimately affects the decision-making process. The ability for guardians and rehabilitation professionals to recognize and resolve ethical dilemmas during decision-making, is paramount to providing the maximum benefits in services and securing the client's best interest.

The ethical principles of beneficence, autonomy, and nonmaleficence can guide the behavior of both the guardian and the rehabilitation professional. Ethical dilemmas arise when a choice must be made between two mutually exclusive, competing courses of action, each of which is associated with significant consequences and supported by one or more of the ethical principles (Wilson, Rubin, & Millard, 1991). For example, an ethical dilemma may occur between action A, supporting and respecting a client's vocational choice to earn excellent wages working at a chemical plant (autonomy), and the competing course of action B, trying to deter the client from further exacerbating their medical condition by convincing the client of the negative long term effects of exposure to hazardous chemicals (beneficence). In action A, the principle of autonomy is chosen and the rehabilitation counselor may be acting in a manner that respects the client's freedom of vocational choice. However, when beneficence is chosen such as in action B, this requires that the counselor act in a manner that promotes the well being of the client, promoting the perceived health concerns of their client. In this scenario, a choice must be made between two competing courses of action and a compromise will have to be reached between the client and counselor.

The ethical principle of beneficence, the desire to do what is considered best for clients and promoting their growth and well being, is central to the practice of rehabilitation counseling (Howie, Gatens-Robinson, & Rubin, 1992). Beneficence is also the driving force behind protective services for adults with disabilities. Beneficent actions can be in conflict with other ethical principles such as nonmaleficence or autonomy (Beauchamp & Childress, 1989). While beneficence requires one to do something actively for another, nonmaleficence requires that one refrain from certain actions that can inflict harm or impose the risk of harm upon another person (Howie, et al., 1992).

One area in which both the guardian and rehabilitation practitioner may be at risk of harming the person under guardianship is by not being aware of the constraints imposed by the guardianship order. The guardian and rehabilitation professional must not make decisions that go beyond the scope of authority granted by the court. The guardian especially has an obligation to assist the person under guardianship in making decisions by ensuring that they are free from undue influence and that the ward has access to as much information as possible concerning alternatives to the proposed rehabilitation plan.

The extent to which the guardian or rehabilitation professional is obligated to actively promote the welfare and protect the rights of the person under guardianship is often difficult to define. The National Guardianship Association's model code of ethics can provide guidance for those persons empowered to make such substitute decisions (Casasanto, et al., 1991). Although the Code cannot address all possible situations confronting guardians as well as service providers, it provides a fundamental structure of the guardian's responsibilities during the decision-making process, and may reduce ethical conflicts which are inherent in the ward-guardian relationship. Both the guardian and rehabilitation professional are vested with enormous responsibility for protecting their client's rights. Beneficent actions need to be balanced with the goal of protection by respecting and encouraging the ward's independence.

Ethical Boundaries in Informed Consent and Substitute Decision-making

Adjudicating a person incompetent, and appointing a guardian, is an intervention which has serious legal and ethical implications and should only be utilized as a measure of last resort (Casasanto, et al., 1991; Iris, 1990; Topolnicki, 1989). Both the guardian and rehabilitation professional must respect the client's freedom to make choices and decisions in areas they are legally competent to do so. Even under cases of plenary guardianship, case law has established that guardians may not restrict their ward's choices in such areas as sexual activity, birth control, sterilization/abortion, marriage, or divorce (Harnish v. Children's Hospital Medical Center, 1982; Rogers, 1984). Pursuant to 14th Amendment rights, the courts have decided that these arenas of a person's life are far too sensitive to restrict by appointing a substitute decision-maker.

Historically, physicians and the courts have relied on family members to give informed consent to persons allegedly incompetent (Emanuel & Emanuel, 1991). However, issues of medical liability as well as precedent setting court-rulings have made it clear that family members and physicians cannot decide unilaterally what types of treatment the person shall receive or not receive until the court appoints a substitute decision-maker.

In the area of substitute decision-making for life-sustaining interventions, the Quinlan ruling (In re Quinlan, 1976) established the legal precedent endorsing a family member as the substitute decision-maker for the termination of life-sustaining treatments. What made this case unique was that the court granted Karen Quinlan's father authority to exercise her right to refuse medical care without any evidence that she would have selected him. Soon after Quinlan, attempts were made by other states to recognize written living wills

and incorporate this into a durable power of attorney arrangement. In 1983, California became the first state to enact such legislation specifically for decisions in a person's health care.

The ethical principle of autonomy is a powerful and relevant concept that is at the foundation of the guardianship process, especially in situations involving informed consent. Autonomy has been used to refer to a set of diverse actions which include self-govern, privacy, and individual choice (Howie, et al., 1992). In order for a person's autonomy to be fulfilled, there must be the presence of all three of the following conditions: (a) voluntariness, (b) competence, and (c) knowledge (Beauchamp & Childress, 1989; Gillett, 1989; Wear & Brahams, 1991). When we analyze autonomous actions we see persons who act (a) intentionally, (b) with understanding, and (c) without controlling influences that determine the action.

To respect a person's autonomy to give informed consent, it is important to first recognize the person's capacities and perspectives, including their right to personal views, to make choices, and to take actions based on personal values and beliefs (Beauchamp & Childress, 1989). Ideally, under the principle of "substituted judgement" (Casasanto, et al., 1991; Christie, 1984; In re Quinlan, 1976; In re Roe, 1982) the guardian must attempt to reach the decision the incompetent person would make if that person were legally able to choose.

Because the boundary between competence and incompetence is often difficult to determine, informed consent substitute decision-making becomes even more critical for those clients whose competency may be questionable. The rehabilitation professional and guardian must ascertain their clients preferences before a substituted decision can be made. The rehabilitation counselor must not make generalizations about the person's past choices, without sufficient supporting data (Howie, et al., 1992). A thorough investigation of the historical preferences and past choices of the person whose competency is questionable must be considered. This will assist in minimizing ethical conflicts and will reflect more accurately the values and lifestyle of both the person under guardianship and the client whose competency may be in question.

In most all cases, the guardianship court order does not give "blanket authority" for the guardian to make substitute decisions for all aspects of the ward's life. It would be wise, if not ethical, for the rehabilitation-practitioner to review their client's court order to determine which area(s) of the person's life the guardian is legally able to make an informed decision about and give consent for their individualized written rehabilitation plan (IWRP).

Conclusion

A major challenge for rehabilitation professionals and those providing guardianship and protective services to adults with disabilities are the legal and ethical issues surrounding a person's competency. The client's ability to give informed consent on their IWRP is oftentimes related to their ability to understand the available options presented to them along with weighing the advantages and disadvantages and communicating their choices to their rehabilitation counselor. Also, it is important for the counselor to be aware of those persons who may lack the capacity to make a good informed decision. Although a client's irrational choices alone, cannot determine competence, the rehabilitation counselor should allow client autonomy during decision-maker.

For those clients whose competency may be questionable, the counselor may want to request an advocate (J. Goldstein, Personal Communication, May 11, 1993) to act as an objective third party to assist in initiating the client's choices. However, rehabilitation professionals should not overreact to a client's alleged difficulty in understanding the components of their IWRP. A referral for guardianship could be inappropriate and undermine the person's right to make their own personal choices.

The appointment of a legal guardian is a major imposition on a person's autonomy. Most states place very little restrictions on the qualifications as to who can actually serve as a guardian. The ethical guidelines used by substitute decision-makers is often questionable and the courts lack the resources as well as the interest in monitoring such activities. About half of the states do not require guardians to report to the courts on their wards' health and living conditions (Topolnicki, 1989). Considering the limited role the person who is allegedly incompetent has in the guardianship process, it is not at all surprising that ethical dilemmas occur creating conflict during the initial stages of this process and beyond. It is critical that guardians as well as rehabilitation counselors balance the goal of court-ordered protection with the goal of minimizing restriction in the person's life.

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Mark A. Stebnicki, MS, CRC, CCM, Doctoral Candidate, Rehabilitation Institute, Southern Illinois University, Carbondale, IL 62901.
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Author:Stebnicki, Mark A.
Publication:The Journal of Rehabilitation
Date:Apr 1, 1994
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