NeuroRehabilitation An Interdisciplinary JDurnal

ELSEVIER

NeuroRehabilitation 6 (1996) 133-143

The role of an ethics committee in a rehabilitation setting Robert T. Guenther *a, Leonard 1. Weber b Psychology and Neuropsychology, Rehabilitation Institute of Michigan, 261 Mack Boulevard, Detroit, MI 48201-2417 USA h The Ethics Institute, University of Detroit Mercy, 8200 West Outer Drive, P.O. Box 19900, Detroit, MI 48219-3599 USA

a Depanment of Rehabilitation

Abstract The ethics committee, initially developed in the acute care setting, can serve to address the particular issues and difficult dilemmas that characterize rehabilitation. The same mechanisms of educational programs, policy development, and case consultation serve to address ethical issues in rehabilitation as well as acute care settings. However, ethical issues in rehabilitation differ greatly from those common in acute care settings. Rehabilitation ethics committees must be prepared to consider issues that include the following: procurement of informed consent for services that are rarely discrete, variable levels of program participation, complex cost-benefit analyses that are subject to less relevant values and biases, unequal access to services, limits of confidentiality, and family/caregiver issues. These difficult issues, peculiar to rehabilitation and made much more complex when patients exhibit cognitive deficits, provide an opportunity for rigorously testing the utility of ethical theory in a complex medical arena.

Keywords: Ethics committees; Rehabilitation; Informed consent; Participation; Injustice; Confidentiality; Caregiver issues

1. Introduction

There has been a growing recognition in recent years of the importance of giving systematic and sustained attention to ethical issues in health care. Ethics is often a topic in the graduate education and continuing education of health care professionals, and articles on ethical issues are common in the health care literature. Also, ethics committees have been introduced in many health care institutions and organizations. There are over

* Corresponding author.

4000 health care ethics committees in the U.S. today [1]. Accrediting agencies now require health care facilities to incorporate ethical considerations into their practices and procedures. The Commission for Accreditation of Rehabilitation Facilities (CARF) requires that clinical practice meet established ethical as well as medical standards [2]. The Joint Commission on Accreditation of Healthcare Organizations (JCAHO) expects health care organizations to formally address ethical issues that arise in the delivery of care. The ethics committee is identified as a preferred mechanism [3]. Ethics committees are popular, but their role is

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not always well understood, sometimes even by committee members themselves. This may be particularly true in non-acute care settings. Though ethics committees arc now becoming more common in rehabilitation, long-term, and in-home care settings, most of the early development of ethics committees took place in acute care settings. Ethics committees can make an important contribution to the provision of high quality professional care in a rehabilitation setting. In order to be most effective, however, ethics committees in such settings need a model that is different from the acute care model. 2. Ethical issues in the acute care setting There are two different dimensions of the acute care ethics committee model that are worth noting here. One is the understanding of its general role and function. The other is the understanding of the kind of issues that are appropriate for its agenda. It is our recommendation that ethics committees in rehabilitation adopt a general role and function similar to that which has become common in acute care. We suggest, however, that rehabilitation ethics committees adopt an agenda based upon the types of issues that result from the rehabilitation enterprise. Most institutions have defined the ethics committee's role as an advisory one. That is, the committee does not make final decisions in regard to institutional policy or the treatment of individual patients. It may draft policies and make recommendations in regard to individual cases, but it is not the decision maker. As an advisory body, its responsibility is to clarify and highlight ethical concerns and recommend the best ways of responding to those concerns. Furthermore, ethics committees do not function as investigatory or sanctioning bodies. It is not their role to investigate reports of unethical or unprofessional behaviour and determine whether someone has violated standards or policy. Such investigations are better referred to the ethical and professional standards committee of the relevant profession. Hospital ethics committees do not attempt to 'enforce' ethical standards with disinterested staff. Rather, they assist

concerned staff in wrestling with and resolving difficult ethical questions. A common understanding is that it is the role of ethics committees to address the hard ethical questions where the 'right thing' to do may not be evident. In carrying out their work, most ethics committees have identified their functions as: (1) education; (2) policy review and development; and (3) case consultation. Committees sponsor ethics educational programs for physicians, staff, and sometimes for the public. They are often asked to assist in drafting or revising policies and procedures related to the ethical issues that have been identified within the institution. Most ethics committees have adopted the optional-optional model of case consultation: it is optional for someone to bring a case before the committee and it is optional for caregivers and patients/families to adopt the recommendation of the committee [4]. The biggest difference between the acute care ethics committee and the rehabilitation ethics committee is not in their basic role and function. It makes good sense for rehabilitation ethics committees to be advisory and the three-fold function is as appropriate in a rehabilitation setting as in an acute care setting. The biggest difference is the nature and range of the ethical issues to be addressed. Acute care ethics committees have been largely devoted to issues of clinical ethics. That is, their focus has been on the ethical issues related to decisions about the care of individual patients. This is largely the result of the fact that the 'hard cases' that have led to the development of ethics committees have usually been cases related to the limiting of life-sustaining treatment efforts. Most of the case consultations done by ethics committees continue to be cases involving treatment decisions near the end of life. The result of this focus has been that ethics committees have been populated primarily by people with clinical expertise. The context is, frequently, the doctor and family at the bedside. Even when the literature in health care ethics has begun to expand, acute care ethics committees remain primarily focused on individual patient care issues. Ethics committees organized to respond to the ethical

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issues in rehabilitation have to identify their own agenda, an agenda built around the important ethical issues encountered in that setting. 3. Ethical issues in rehabilitation Rehabilitation presents its own difficult ethical issues and dilemmas [5,6]. They include: (1) issues regarding informed consent to rehabilitation and ongoing participation in rehabilitation; (2) issues related to the various costs of services relative to the ability of individuals to benefit from rehabilitation services; (3) issues that result from unequal access to resources; (4) confidentiality issues; and (5) caregiver issues. While some issues will not fall neatly into these categories, we suggest these as a way of beginning to organize the many complex ethical issues encountered in the rehabilitation setting. 3.1. Issues of informed consent

Informed consent is an essential prerequisite for the delivery of most non-emergency acute health care services. It is acquired by explaining the recommended procedure, its benefits and potential risks, alternatives to the recommended procedure and their potential benefits and risks, and the reasons why the health care provider is making this particular recommendation, all from the perspective and standard of the patient's desire to have an adequate understanding of this information for the purpose of accepting or rejecting a proposed treatment [7]. When the patient has demonstrated an understanding of the above and agrees to undergo the recommended procedure, a consent form is signed and the procedure is initiated by the health care provider while the patient passively undergoes the procedure. The rehabilitation candidate is usually confronted with a dramatically different experience. She or he has often suffered an unexpected devastating injury or illness and is confronted with the specter of life with a disability. The patient just begins to experience medical stability when he or she is asked to give consent to rehabilitation to make the most of living with chronic limitations. Integration of this information is ex-

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tremely difficult. Prejudices regarding the meaning of being disabled may limit the individual's ability to make informed decisions [8]. Refusal of rehabilitation services may be based upon inaccurate biases and firmly held misconceptions. Acute care often consists of a sequence of discrete procedures. Consent for each procedure can be procured. In contrast, rehabilitation consists of a long continuum of non-discrete therapies and classes designed to facilitate the acquisition of new skills and techniques, often involving the use of adaptive equipment [9]. The patient's relative level of independence evolves as a result. Since acute care and rehabilitation differ so markedly, it is argued by some [10] that respect for patient autonomy in rehabilitation must be exercised in a different manner from that exercised in the acute care setting. In rehabilitation, they argue, there is ample justification for initially overriding the individual's reluctance to undergo rehabilitation until the individual is better informed about the nature of disability and rehabilitation. Then, autonomy can be restored. Patients are best served by preserving their potential to re-acquire full autonomy by first paternalistically overriding impaired autonomy [Ill An educational model of informed consent in rehabilitation is offered in contrast to the contractual model in acute health care delivery. The educational model suggests that paternalism is more acceptable during the initial stages of rehabilitation and less so as the patient becomes increasingly educated about her or his condition and needs. As rehabilitation progresses, there is increasing emphasis upon patient direction of her or his rehabilitation program and care. There is thus a power shift from rehabilitation care provider to patient-student [10]. The need to think differently about informed consent in rehabilitation may be somewhat overstated. A central aspect of rehabilitation is the requirement that patients participate actively. Patients are, in most cases, required to gain some amount of insight into their condition, they must behave adaptively so as to reduce or prevent complications, and they must utilize techniques and equipment appropriately so as to maximize independent functioning. It can be extremely

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difficult to force, paternalistically, active learning and participation in a demanding rehabilitation program. Rehabilitation can be entirely sabotaged by a patient's consistent refusal to participate regardless of the team's best efforts. Rehabilitation cannot usually be conducted with a passive patient, and it rarely proceeds with an actively resistant or defiant patient, beyond family education and training. There is rarely a real option of paternalistically inducing the patient to participate in the program, learn about health care needs, and direct her or his care when she or he is refusing to participate. A rehabilitation facility ethics committee may be asked to consult in cases where an individual with good potential for benefit from rehabilitation is refusing to participate or is requesting premature discharge from the program. The committee often serves the purposes of ascertaining the nature of the individual's refusal to participate, clarifying the patient's right to terminate rehabilitation, and recommending action compatible with that right [12]. In these cases, the ethics committee safeguards the individual's right to refuse or discontinue inpatient rehabilitation when it is not desired by a relatively informed and competent patient. The issue of competence and decision-making capacity is an aspect of the issue of informed consent. Respect for patient rights means respecting consent or refusal decisions when patients are capable of making decisions that reflect their personal preferences, values and beliefs. As others have noted, this is generally not an issue until one disagrees with the health care professional [13]. It is a relatively common problem within rehabilitation settings. Many rehabilitation patients suffer from losses of cognitive abilities. When such patients disregard the team's recommendations, they may then be mistakenly presumed to lack decision-making capacity, despite a well-documented long-standing history of consistently making similar 'unwise' decisions. Disagreement with even the best medical recommendations does not prove decisionmaking incapacity. Even patients with some degree of documented decision-making incapacity do not automatically lose all autonomy. The ethics

committee may be asked to assist the team with clarification of the relevant issues and evidence regarding decision-making capacity vis-a-vis treatment refusal.

3.2. Potential to benefit from rehabilitation Candidates for rehabilitation services may not be selected for admission due to a variety of factors that will likely limit the potential to benefit from those services. Some candidates will be medically unstable such that continued acute care is indicated. Patients with severe traumatic brain injuries and cerebrovascular accidents may continue to be unable to meaningfully process stimuli. Other candidates lack sufficient caregiver support necessary for living outside an institution. These situations are relatively non-controversial, as long as improvements in the status of these factors results in reconsideration for inpatient rehabilitation [14]. More controversial are those individuals who may have other conditions which limit their ability to benefit from rehabilitation. Particularly problematic are psychiatric conditions or personality disorders that preclude an individual from engaging in health-promoting behaviour or which directly cause self-injurious behaviour. Some individuals may be insufficiently stable psychologically to benefit from rehabilitation. Such instability often emerges only after there are increasing expectations for independent self-care. Judgments regarding likely benefit from rehabilitation are sometimes influenced by the values of rehabilitation service providers. Patients may refuse to embrace 'independence', they may reject 'viable' vocational options, and they may insist upon receiving 'unnecessary' care from caregivers. Differences of value may be experienced by rehabilitation service providers as affronts to the values of the team members and contrary to the traditional goals of rehabilitation [15]. Individuals who do not value independence, employment or functional autonomy may be mistakenly viewed as entirely unable to benefit from rehabilitation. These persons may be discharged more rapidly as they more quickly reach their limited goals. They may also be prematurely dis-

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charged even more rapidly when the team inadvertently allows covert hostility to be expressed in the form of a punitive early discharge, rationalized in terms of limited ability to benefit from continued services. The judgment that someone has little or no potential to benefit from continued rehabilitation is a judgment that can sometimes be influenced by considerations other than sound evidence [16]. Having high ethical standards in the making of these judgments means being clear on the basis of the judgment and reducing as much as possible the impact of irrelevant or inappropriate considerations. 3.3. Issues of justice

It is a reality that some individuals have access to extensive health care resources while others have access to very little. The basis for these differences may appear to be quite arbitrary. For example, Michigan auto no-fault insurance regulations mandate that all medically indicated services and equipment be reimbursed for the life of patients injured in auto accidents. Some health insurance plans, on the other hand, will not reimburse for more than cursory rehabilitation and may not reimburse at all for durable medical equipment such as a wheelchair. Individuals with minimal insurance may have to confront a bleak discharge plan lacking follow-up services. Rehabilitation service providers who must design programs and deliver services within a system that allows these differences may find themselves frustrated by such injustice [17]. While there is little that individuals can do to remedy these situations, rehabilitation service providers may find themselves resentful of the 'leisurely pace' of rehabilitation sometimes provided to those with better insurance. While an ethics committee is not expected to change the coverage of any particular patient, these issues provide the opportunity to engage in an educational effort designed to promote careful and systematic thinking about the implications of attempting to provide consistent services in an unjust system [7]. Health care professionals have a responsibility not just to the individuals they serve;

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they should be informed advocates of a more equitable and adequate system [18]. 3.4. Confidentiality issues

There are situations in which issues of privacy of information produce difficult dilemmas. The medical record may contain entries and information that patients insist be kept confidential. Such information may include positive drug and alcohol screens at admission, HIV status, information regarding behavioral health liabilities such as drug dependence or high-risk sexual behaviour, and information regarding prior history of mental illness. Rehabilitation candidates are rarely aware of the extent to which information will be shared with their entire rehabilitation team. Even more disturbing to many patients is the extent to which the team desires to share information with caregivers. Disability is often accompanied by increased dependence upon family or other caregivers. As rehabilitation service providers attempt to train patients in directing the care that caregivers will provide, a variety of issues may emerge. A patient may reveal that a caregiver has previously been abusive or neglectful. While the team is inclined to deal directly with these issues, the patient may refuse consent to discuss the issue with the caregiver in fear of jeopardizing that caregiver's support. Such refusal by a patient with cognitive deficits may be extremely difficult to respect, since the cognitive deficits would seem to exacerbate the patient's vulnerability to neglect and abuse. These issues are further complicated when the cognitively impaired patient cannot fully understand how state-mandated requirements to report neglect and abuse strictly limit confidentiality. It is unfortunate that abuse and neglect are as common as they are in contemporary family life. The rehabilitation patient is usually regarded as the one at risk, but it is not uncommon for a caregiver to confide that she or he is fearful of continued physical abuse at the hands of the patient. Caregivers often refuse to allow the issue to be discussed, fearing that this will only escalate the patient'"s anger and produce more severe abuse after discharge. Requests that such issues

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not be addressed create extremely difficult dilemmas for team members, since such patients may be less able to control aggressive impulses following neurologic insult. Members of the rehabilitation team may unintentionally become keepers of secrets. An identified caregiver may tell a therapist of a decision to refuse involvement with the patient's care, but may also insist that only he or she, the supposed caregiver, has the right to tell the patient of this decision. Meanwhile, a more workable discharge plan is not developed. A patient may insist that caregivers not be informed of her or his level of independence, since this may reduce the amount of care the patient can demand. Aspects of care may be dealt with as if they are confidential information. A patient may refuse to have family trained in how to give invasive care (e.g. catheterize), with the consequence that no caregiver can give this life-sustaining assistance when the patient is too ill to self-catheterize. Caregiver training can be excessively limited by invoking the patient's 'right to privacy' with increased risk of complications resulting. In all of these situations, the boundaries of confidentiality must be clarified if the rehabilitation team is to effectively manage these complex and often dysfunctional relationships toward the goal of a safe discharge. Fortunately, there have been discussions of the nature and limits of confidentiality in health care that the ethics committee can draw upon to assist the rehabilitation team such that the 'unit of treatment' may legitimately be defined to include essential caregivers [19].

3.5. Caregiver issues The issues of confidentiality point to the frequency with which caregiver issues present rehabilitation service providers with very difficult ethical dilemmas [20]. A caregiver may demonstrate an inability to safely provide supervision or give required care. This apparent inability may result from lack of motivation, it may reveal the caregiver's cognitive or physical limitations, or it may belie a substance abuse pattern. It is tragic

that individuals with new-onset disabilities can complete a rehabilitation program in exemplary fashion only to suffer severe complications when caregivers fail to give the quantity and quality of supervision or care necessary to maintain health and functioning. Patients with cognitive limitations may be tragically tolerant of neglect and abuse. At the other end of this continuum are those caregivers who insist upon giving unnecessary care, pushing the chair of a patient who desperately needs that endurance-building exercise. In these situations, some patients may fear causing resentment among caregivers if they reject the offered care. Other patients may welcome the excessive care, allowing their independence to be sapped away into 'dysfunctional unnecessary dependence.' Cognitively impaired patients may be vulnerable to adopting a 'disabled role' as limiting as their neurologic insult. Rehabilitation service providers who observe these patterns may feel that the patient's entire program is being undermined, and serious conflicts between caregivers and team members may result. These conflicts may pose serious threats to the continuation of a successful program. There are family members who present to the rehabilitation team with profound hostility. They are understandably angry about the injury to their loved one. They may be grievously wounded by that loved one's losses. In addition, they may have severe limitations in their ability to cope with the demands of shifting from recipients of care within the family to caregivers without harbouring intense resentment compounded by guilt. Their influence upon the rehabilitation program may then be highly disruptive. In a similar fashion, patients who view themselves as the primary caregivers within their families may be opposed to receiving care from family members. They may seem to sabotage attempts to train family members to give necessary care. In any of these cases, rehabilitation service providers may request the assistance of the ethics committee to clarify the responsibilities of the team and the limitations within which the team may ethically challenge family-caregiver systems.

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4. Rehabilitation ethics committee case consultation As previously noted, the ethics committee usually has a three-fold function. The ethical issues identified above are addressed in educational programs, in policies and procedures, and in individual case consultations. Cases are brought to the committee as prospective cases at times: team members are seeking some additional reflection on how to proceed. At other times, the cases are retrospective: team members want to think through a particular case with the assistance of an ethics committee in order to prepare to more effectively address similar situations in the future. It may be useful to consider three hypothetical cases that might be brought before an ethics committee, in order to provide some additional insight into the role of such a committee. We have based these cases on actual ones, with essential elements altered to protect confidentiality. 4.1. Case 1

A 20-year-old patient with C-7 tetraplegia was admitted to the spinal cord injury rehabilitation service after being injured in a motor vehicle accident while intoxicated. When admitted to a rehabilitation facility, he displayed a very poor understanding of the nature of inpatient rehabilitation. He was extremely reluctant to allow the medical examination. He also appeared surprised that he was being scheduled for therapies. Despite many attempts to educate him about the nature of rehabilitation and the consequences of refusing rehabilitation, he continued to state that he had been admitted believing that he was going to a nursing home, that he was opposed to receiving rehabilitation services, and he was fairly consistent in refusing most, if not all, of his therapies. A variety of strategies were tried in the hope of encouraging participation. More senior and experienced therapists were assigned to work with him in the hope that they would be more successful engaging him. He displayed a seeming openness to the team's nurturing and caring, but he continued to refuse nearly all therapies, and he became gradually more insistent that he be discharged to

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a nursing home where he would be 'left alone and not bothered all the time.' There was no evidence of a head injury or of cognitive deficits. Cursory examination suggested mild dysphoria insufficient for a diagnosis of depression. He appeared to have an understanding of his condition, and he understood the predictions regarding his likely deterioration if he simply went to a nursing home where he would be a passive recipient of whatever care happened to be given to him. He also disagreed with those predictions. The team informed the patient that he would have to wait for a 'proper wheelchair' before being transferred to the nursing home, and he was told that he was not sufficiently stable medically for the nursing home to accept him. This information was incorrect in that the nursing home had wheelchairs, and he was sufficiently medically stable. A member of the team requested an ethics consultation to help clarify the team's responsibilities under these circumstances. The ethics committee identified the primary issue in this case as the issue of admission and treatment without informed consent. The patient had been admitted without full consent based on the expectation that he would 'come around' and that, in the long run, getting him into rehabilitation would be very much to his benefit. The failure to honour his informed refusal of treatment continued while he was an inpatient, with deception being employed. The hope for greater subsequent benefit by· overriding this patient's autonomy was being revealed to be a false hope, but there would be a serious ethical issue even if the patient had, after being involuntarily admitted, later agreed to participate in rehabilitation. After some deliberation, the ethics committee reached a consensus. This case makes it clear that some patients may be refusing treatment on the basis of their values and beliefs such that education has no effect on their resolve to refuse that treatment. Their values and beliefs should generally be respected and honoured. Informed patients with decision-making capacity do have a right to refuse treatment, even if they would benefit from such treatment. It is appropriate, of course, to try to persuade them to change their minds, but to

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admit without consent and to use deception to try to gain more time are not within the bounds of legitimate persuasion. The ethics committee expressed the opinion that patients with apparently intact decision-making capacity who are consistently refusing rehabilitation should not be admitted unless there is an agreement that the patient will attempt a very brief rehabilitation stay, after which her or his refusal can be re-assessed. The committee also suggested that the facility would likely benefit from an improved and more consistent method of assessing the extent to which informed consent for inpatient rehabilitation is procured. 4.2. Case 2

A 25-year-old who had suffered a mild brain injury on the job was receiving ongoing occupational therapy as an outpatient. The patient confided to her therapist that she had recently procured a part-time job for which she was paid in cash. Those wages were not being reported as taxable income, and thus, the patient continued to collect her disability income while also being paid for gainful employment. The patient admitted that she had been exaggerating many of her supposed cognitive difficulties to remain on disability a little while longer. The therapist also expressed her concern about the patient's dishonest behaviour and consumption of resources that might better serve others. The patient responded that the therapist could not reveal any of this information to anyone since that would constitute a violation of confidentiality. The therapist requested an ethics committee consultation to assist her with determining her responsibilities to the patient, her responsibilities to the insurer who was paying the patient's disability benefits and her therapy charges, and her responsibilities to the rehabilitation facility. The therapist had previously been a very vocal advocate for this patient but was now feeling somewhat conflicted about her complicity in the 'scam.' She also wondered whether she would be betraying the patient's trust if she reported the patient's behaviour. The ethics committee, in reviewing this case,

noted that the principle of confidentiality is based upon the premise of reducing harm and maximizing benefit to those persons served. The principle of confidentiality serves to protect those persons served from unnecessary, unwarranted and harmful revelations of personal information to others who have no justifiable need to know this information. The principle of confidentiality was not thought to be applicable in this case because other parties did have a clear and reasonable right to receive this information. The therapist, like many health care providers, found herself tom between the roles of patient advocate and resource gatekeeper. Health care providers will increasingly find themselves in these seemingly conflicted roles. Changes in the health care delivery system will continue to make health care providers appropriately responsible for resource allocation decisions, and the therapist was encouraged to embrace this challenging aspect of her position. By accepting reimbursement for services from the Worker's Compensation Insurance fund, the therapist and her organization were agreeing to abide by appropriate professional standards and provide only those services appropriate to meet the patient's needs and assist her with a timely return to employment and independent functioning. The ethics committee suggested that the therapist, through appropriate mechanisms and with the patient's knowledge, inform the appropriate parties of the situation, but only after the patient had been given every opportunity and encouragement to correct the situation independently. 4.3. Case 3

A woman in her mid-20s was admitted from a skilled nursing facility for inpatient rehabilitation several years after suffering a devastating head injury. Her family, very involved in her care, had lobbied for her rehabilitation, believing that she could benefit. The patient was admitted when she answered yes/no questions reliably. Shortly after admission, the patient's former boyfriend, a chronically unemployed man twice her age, began to visit. On one occasion, the nursing staff intervened when they found the

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boyfriend attempting to have intercourse with the patient. The family insisted that his visitation rights be terminated, but the patient indicated that she wanted him to visit her. The family was outraged and threatened to remove the patient, but the patient declined this option. The family then threatened legal action if the patient was 'raped.' In addition, the team was becoming increasingly hostile to the boyfriend. The boyfriend and the patient had lived together for several years prior to her automobile accident. He had attempted to visit her at the skilled nursing facility, but the family had successfully prevented him from being allowed to visit her at that facility. No one had attempted to solicit the patient's preference regarding this situation until after her admission to the rehabilitation facility. Additionally, the family stated that they would not be taking the patient to one of their homes as previously promised. The boyfriend then stated that he would take the patient to his home and care for her, a plan with which the patient indicated vigorous and consistent agreement. The team was alarmed by this change in plans as they thought the boyfriend smelled of alcohol at times, and they feared that he might be sexually exploitative. The family and rehabilitation team agreed that the patient needed protection from the boyfriend. At this point, the ethics committee was asked to clarify the relevant ethical issues and suggest a course of action. The patient appeared to be profoundly impaired with little awareness of her environment, but this appearance was deceiving. The neuropsychological evaluation revealed significant cognitive deficits in multiple areas, but her functioning was vastly superior to how she appeared. To everyone's surprise, she was able to communicate very slowly in a barely audible whisper. In this manner, she indicated that she questioned her family's commitment to taking her to one of their homes, she refused to consider returning to the nursing facility, and she stated that she would gladly go to her boyfriend's apartment. She stated that she desired sex with her boyfriend and although she knew that he consumed too much alcohol, she denied ever being abused by him.

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She did not believe that he would ever abuse or neglect her if he took her home. The ethics committee noted that the patient appeared to possess sufficient cognitive ability to know and express her preferences and values. Thus, the team, the patient's family, and the boyfriend were encouraged to solicit and respect the patient's wishes. As a consequence, all parties involved increased their focus on the patient as primary decision-maker. The team trained the boyfriend in her care, and he completed the training sessions without being intoxicated. The boyfriend angrily insisted that his rights as well as the patient's rights had been violated previously when his visitation was prohibited. Using this as a premise, the team argued that he should encourage the family to visit the patient in his home. He reluctantly agreed when the patient indicated her preference that her family remain involved. The patient agreed with a number of other recommendations made by various parties involved. The boyfriend reluctantly agreed to the assignment of a community social worker to perform unannounced visits that would not be excessively invasive, that would allow an assessment of the quality of care she was receiving, and that would provide her with an opportunity to report abuse or neglect to a third party. Everyone involved was in agreement that birth control issues would have to be addressed. The family acknowledged that they had bitterly opposed the patient's choices prior to her brain injury. In fact, the patient had previously cut all ties with them. As is so often the case among young persons who acquire new disabilities, an old scenario of family conflict was at risk of being re-enacted. The family reluctantly agreed to participate in family therapy to assist them with these issues. 5. Conclusion The nature of rehabilitation and the population there served tend to produce very difficult ethical issues. Rehabilitation demands a certain level of patient and caregiver involvement including involvement in the delineation of goals, acquisition

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of information about altered health care needs, and techniques for safely providing appropriate assistance. The patient's level of independence has almost always been dramatically reduced, threatening her or his ability to fulfil social roles. Issues surrounding cognitive status, decision-making capacity, and pre-existing lifestyle choices and personal values often become extremely complex. Interpersonal boundaries within families that have evolved over many years are suddenly challenged and may have to be adjusted. Some level of the patient's independence can usually be re-acquired, through apparent dependence upon the rehabilitation team. A form of dependency may thus be initially encouraged, followed by encouragement to embrace autonomy and emancipation. A temporary (or sometimes semi-permanent) meta-family may result, wherein the rehabilitation service provider encourages initial cooperation and adherence to recommendations, toward the eventual goal of emancipation from that same rehabilitation service provider. Issues similar to those that accompany parenting can develop. Ethics committees stand at the intersection between the hard ethical issues and ethical theory or principles. They try to apply principles to practical situations as a way of assisting persons who are trying to determine what to do. In the process, they are, not surprisingly, providing an opportunity for on-going reflection regarding how to better understand the principles. Ethics committees raise the level of awareness of ethics within the institution or organization. At the same time, they give the 'experts' who are writing and teaching in health care ethics a real world'framework for the rigorous testing and further development of ethical theory. As more ethics committees in rehabilitation settings wrestle with the difficult ethical issues facing rehabilitation service providers, they will be able to present the field of theoretical ethics with principles that have been thoroughly tried in the most demanding medical settings. Those principles will likely provide guidance for future medical practice well beyond the scope of the formal rehabilitation enterprise.

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[18) Callahan D. Allocating health care resources: The vexing case of rehabilitation. Am J Phys Med Rehabil 1995;740 Suppl):S3-S6. [19) Wear S. Commentary on the case of Tony. In: Haas J, Caplan AL and Callahan D, eds. Case studies in ethics

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and medical rehabilitation. Briarcliff Manor, NY: The Hastings Center, 1988;3-6. [20) Callahan D. Families as caregivers: The limits of morality. Arch Phys Med Rehabil 1988;69:323-328.

The role of an ethics committee in a rehabilitation setting.

The ethics committee, initially developed in the acute care setting, can serve to address the particular issues and difficult dilemmas that characteri...
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