Rehabilitation medicine encompasses medical, psychosocial, and vocational interventions provided to persons who have experienced some type of functional impairment. Individuals receiving rehabilitation services may have been born with a disabling condition, such as cerebral palsy, spina bifida, muscular dystrophy, or mental retardation; or they may have acquired disability from stroke, spinal cord injury, polio, amputation, cardiovascular disease, acquired immune deficiency syndrome (AIDS), or traumatic brain injury. They may receive rehabilitation treatments at a traditional acute-care hospital, at a hospital specializing in rehabilitation, or at a post-acute facility, sometimes called a transitional or independent living facility. Increasingly, individuals receive rehabilitation services in their homes through home health agencies or visiting nurses (DeLisa).
Consumers of rehabilitation medicine, especially if their disabilities are acquired rather than congenital, invariably experience intense feelings of anger, rage, helplessness, and worthlessness (Gunther, 1971). Ethical problems arise from the way disability disrupts one's capacity to make autonomous choices and decisions and to develop and sustain meaningful social relationships. The transformation of a self that experiences profound alienation resulting from a disability to a self that can productively engage the world is the ultimate challenge of rehabilitation and prompts many of its ethical considerations.
Certain aspects of contemporary rehabilitation medicine derive from treatment strategies, dating back to the 1920s, for managing job-related injuries. A series of developments associated with World War II, however, shaped rehabilitation medicine as it is known today. Widespread use of penicillin resulted in the survival of seriously injured soldiers. The resultant crowding of nursing homes and chronic-care facilities created an imperative to return wartime casualties either to the front or to meaningful civilian life. President Franklin Roosevelt, himself no stranger to rehabilitation, wrote to Secretary of War Henry Stimson in 1944 that "No overseas casualty [shall] be discharged from the armed forces until he [sic] has received the maximum benefit of hospitalization and convalescent facilities, which must include physical and psychological rehabilitation, vocational guidance, prevocational training and resocialization." Toward the war's end, financier Bernard Baruch and physicians who included Howard Rusk and Henry Kessler established Veterans Administration hospitals that would translate the war experience of rehabilitation into civilian life. Their vision evolved into the comprehensive multidisciplinary approach of rehabilitation that is known today (Berkowitz).
Admission to a rehabilitation facility, typically a few weeks or months after acute hospitalization, anticipates that the individual is medically stable and not at serious risk of a life-threatening episode. Most important, patients admitted to rehabilitation facilities are deemed to have sufficient capacity and "rehabilitation potential" to engage in various therapeutic programs aimed at restoring as much functional ability as possible (Purtilo, 1992). Absence of rehabilitation potential may result in the individual's admission to a long-term-care facility.
Contemporary rehabilitation interventions focus on reducing the disabling effects of physical impairments (e.g., poor motor control, loss of sensorimotor skills, muscle weakness, loss of sensation, paralysis, loss of bowel and bladder control); cognitive impairments (e.g., poor concentration, memory, attention, insight, information processing, problem solving); or behavioral impairments (e.g., emotional disorganization, poor emotional expression, inability to engage in goal-directed behavior, poor interpersonal skills). Because the patient's impairments often appear in combinations or clusters, rehabilitation medicine involves an array of specialized therapies and services to assist patients in overcoming their often multiple functional limitations (Keith).
In acute rehabilitation hospitals, treatments are typically provided by a specially designated team of professionals that, depending on the nature and extent of the patient's impairments, may include a physiatrist (a physician who specializes in physical medicine and rehabilitation), a rehabilitation nurse, a physical therapist, an occupational therapist, a specialist in communicative disorders, a recreational therapist, a psychologist, a social-service specialist, a spiritual adviser, an orthotistprosthetist, a vocational rehabilitation counselor, and perhaps a rehabilitation engineer (Lyth). Length of stay for rehabilitation patients varies according to medical need and the extent of health insurance. Stroke patients commonly spend two to six weeks in acute rehabilitation (Parfenchuck et al.); persons with serious brain injury may spend one to four months (Cope and Hall); and persons with spinal cord injury may spend three to five months (Apple).
Because the scope of rehabilitation medicine is so broad, and because other entries will focus on bioethical aspects of disability that either follow from or are independent of an individual's formal stay in an in-patient rehabilitation facility, this entry will discuss certain bioethical aspects of rehabilitation medicine as they derive from the provider-patient relationship. Examining how rehabilitation relationships form and evolve illuminates how bioethical ideals such as autonomy, nonmaleficence, beneficence, and justice occur in the context of treating persons with serious disability. The provider-patient models whose bioethical ramifications will be discussed below are the contractual, paternal, educational, and empowering models.
THE CONTRACTUAL MODEL. The contractual model usually refers to the clinician and the patient developing a mutual understanding and accord on the nature of and need for treatment, its probable benefits and risks, and so forth. Informed consent is central in such discussions; the provider of services assumes certain contractual responsibilities to inform and secure consent to treat the patient, while the patient's consent implies an agreement to the conditions of treatment, including reasonable compliance with the treatment program, remunerating the provider, and so on (Caplan et al.).
The rehabilitation patient's engagement in treatment is not passive, as it would be in an acute, surgical scenario. Active and eventually self-directed, it focuses on learning and performing a variety of functional tasks, such as walking, dressing, toileting, and bathing. Nevertheless, the contractual model in acute rehabilitation is immediately qualified by the fact that many rehabilitation patients have sustained organic impairments that substantially interfere with their cognitive ability to make autonomous decisions. Some patients may not be able to concentrate on, understand, evaluate, or process information well enough to make choices and decisions congruent with their welfare. Or the patient may be psychologically devastated by the onset of disability and unwilling to participate in therapy. Certain rehabilitation patients may experience serious cognitive disorganization accompanied by frightened, anxious feelings and regression to childlike levels of behavior, especially with respect to managing their feelings and impulses (Rosenthal).
Although rehabilitation is defined as elective treatment, many patients do not elect it at all. The onset of a disability like stroke, spinal cord injury, or brain injury can be so abrupt and severe that many rehabilitation patients begin to comprehend the nature and extent of their disability only after they have been medically stabilized and referred to the rehabilitation environment. There the patient, confronted with the functional challenges that the disability has imposed, may begin to try to make sense out of what has happened and to deal with the fact that some of his or her life expectations may have to be modified. To the extent that patients are cognitively or psychologically unable to manage these situations, their capacity to make autonomous choices is problematic (Purtilo, 1988). Furthermore, the individual who is discharged directly from an acute hospital to a rehabilitation facility, and only then begins to realize his or her circumstances, has not voluntarily assumed the promissory role that is implicit in the contractual model. To view such a patient's subsequent resistance to or noncompliance with the rehabilitation effort as a violation of a contractual agreement overlooks the fact that the patient may never have reflected on or consented to rehabilitation in the first place.
In sum, the contractual model's presumption of an autonomous self who can voluntarily and insightfully contemplate, assume, and fulfill a variety of promises and obligations is hardly congruent with the reality of the acute rehabilitation environment for many patients. From what has been implied above, a more probable model of care, at least in the early stages of recovery from a neurological event, is the one that will be examined next: the paternalistic model.
THE PATERNALISTIC MODEL. Paternalism has been defined as "the interference with a person's liberty of action justified by reasons referring exclusively to the welfare, good, happiness, needs, interests or values of the person being coerced" (Dworkin, p. 65). Once the prevailing model in provider-patient relationships, paternalism has since 1970 come under increasing fire, both from the patient-rights' movement and in the literature of bioethics. Compelling legal justifications for paternalism now condone overriding a patient's decision only when the decision would pose serious harm to the patient or to identifiable others (Jonsen et al.). In acute rehabilitation, justified paternalism is usually predicated on the patient's impaired cognition or psychological disorganization. As Arthur Caplan observed, "If it is true that time is essential in allowing patients to accommodate to the reality of severe impairment, then this would seem … at least for some patients in some settings, to allow for the presence of paternalistic medical care" (1988, p. 315).
Paternalism in acute rehabilitation frequently appears when patients resist complying with their therapeutic program. Patients may object to the time at which they must rise in the morning to begin therapy, the nature and intensity of their therapies, their diet, the kinds of medications they require, the aesthetics of their hospital room, the personalities of other patients in their room, the date of discharge, or the discharge site. Alternatively, some rehabilitation patients will insist on engaging in activities that pose harm to them, such as trying to walk unassisted despite poor balance or muscle weakness.
Paternalistic interventions in certain instances—such as refusing to comply with a clinically depressed, suicidal patient's request for privacy—are easily justified. Paternalism cannot serve as the preferred provider-patient relationship, however, for at least three reasons. First, justifying a paternalistic intervention in rehabilitation on the basis of a patient's cognitive or psychological impairment requires an objective determination of that impairment. If the rehabilitation patient exhibits profoundly impaired memory, extreme confusion, or very poor judgment, he or she has a doubtful claim to self-determination. Yet providers may disagree on which of the patient's decisions are sufficiently problematic to justify a paternalistic decision. Richard Wanlass and his colleagues showed that rehabilitation clinicians do not consistently or reliably apply the labels "mild," "moderate," and "severe" to cognitively impaired patients; Vivian Auerbach and John Banja found that considerable discrepancy exists among physicians, mental-health professionals, and lawyers in distinguishing competent from incompetent decisions made by persons with traumatic brain injury; and Bruce Caplan noted a marked disparity between patient and provider ratings of the patient's mood. In cases of considerable professional disagreement about a patient's "competence" to make decisions or the severity of a patient's cognitive impairment or mood disorder, it is not possible to justify overriding the patient's decision on those bases.
A second reason for rejecting a thoroughgoing paternalism in rehabilitation is that providers with paternalistic attitudes risk misinterpreting resistance to therapy as "noncompliant" or "unmanageable." Whatever their therapeutic value, such attitudes and behaviors may indicate the provider's need to be in control (McKnight). When patients resist the provider's ministrations, the provider may become angry or exhibit behaviors destructive to the therapeutic relationship (Gunther, 1987). What may appear to be noncompliant patient behaviors may in fact be the patient's attempt to assert himself or herself, an attempt that perhaps ought to be applauded as an expression of the patient's striving for independence rather than discouraged as inappropriate behavior.
A third reason for rejecting paternalism is that it ultimately runs counter to the rehabilitation ideal of independence. If the goal of rehabilitation is to help the person's movement toward functional independence, then patients ought to begin learning how to assume control of their lives in the rehabilitation environment. Consequently, the rehabilitationist who excludes the patient's input or interest in defining goals and making decisions is stifling the very behavior and attitude he or she is supposed to be cultivating. Indeed, because a profound change in one's bodily image and functional capacity can so seriously affect one's self-image and identity, the ultimate goal of rehabilitation may well be to bring patients to accept themselves as persons with disability and empower them with the necessary will and information to engage the world on somewhat new terms (Banja).
THE EDUCATIONAL MODEL. Empowerment depends in part on various kinds of information the patient will need to function as autonomously as possible. Newly disabled persons require information on and training in managing their activities of daily living (e.g., bathing, grooming, feeding, toileting, and so on); they may also need to learn about creative recreational opportunities, financial planning, social skills training, problem solving, accessing community resources, sexual enjoyment, using community transportation, assertiveness, and perhaps vocational planning or training. Patients should also learn about their rights as rehabilitation consumers before and after rehabilitation discharge: that they have the right to request reasonable changes in the personnel of their teams; that disclosures of otherwise confidential information may occur, for example, to family members or third-party payers; how rehabilitation termination is decided and what evidence is used to determine the nature and length of the rehabilitation; and how they are protected by legislation, such as the Americans with Disabilities Act (Caplan et al.).
Providing this information responds to the same ethical principles requiring that information be imparted to an individual about to undergo surgery. In the latter case, information is treatment-specific, while in the former, the information addresses a host of functional issues. But whereas consent to surgical procedures pertains only to the intervention at issue, consent to rehabilitation reflects a disabled person's willingness to manage his or her life. If no effort is made to stimulate the rehabilitation patient's will to use that information or to be autonomous, then the rehabilitation effort may ultimately fail. Rehabilitation providers not only must convey important information but also must seek to deepen the patient's appreciation of its value and encourage the patient to use it.
THE EMPOWERMENT MODEL. Able-bodied persons frequently confess to being uncomfortable around and having negative feelings toward individuals with disability. Persons with disability are therefore often isolated, deprived, discriminated against, and generally assigned to dependent roles. Ironically, even public programs presumed to assist persons with disability toward autonomy and independence sometimes foster dependency (McKnight). Persons who receive services from such programs frequently complain of feeling dehumanized, subservient, devalued, and ostracized. Studies of the psychodynamic aspects of relationships among program personnel and clients suggest that program staff may develop a narcissistic feeling of authority from these relationships that is threatened by their clients' acting independently (Mullins). Consequently, it is not surprising that such programs may be perceived by clients as unhealthy.
According to the empowerment model, which is moored in principles of social justice, the goal of rehabilitation is to facilitate the rehabilitation consumer's access to social goods. Necessary elements of this access involve social attitudes and measures that aim at equalizing opportunity. Because persons with disability face limitations on normal functioning, justice theorists like Norman Daniels (1985) argue that a society ought to assume certain duties to make up for the fact that an unequal distribution of disabilities among citizens unfairly handicaps the disabled person's attempts to satisfy his or her life needs. Legislation such as the Americans with Disabilities Act, which calls for reforms in hiring practices, barrier-free architecture, handicapped-accessible public transportation, and the implementation of communication devices in business operations for employees who are speech- or hearing-impaired, is highly responsive to the goal of empowerment.
The robust sense of autonomy explicit in the empowerment model transcends clinical objectives that stop at restoring functional ability. In seeking to enhance the individual's power to control his or her life, the empowerment model aims at liberating the individual's self by respecting and advocating the individual's right to his or her choices, preferences, and decisions. From a therapeutic standpoint, therefore, the provider may have to honor the patient's preferences even if they contradict the therapist's, allow the patient to take reasonable decision-making risks, and be prepared to assist when the patient fails. Most important, the therapist must provide the patient with the tools necessary to seize, maintain, and enjoy control of his or her life.
Because many rehabilitation patients are depressed and despondent over the onset of their disability, various empowering models or strategies have been formulated by mental-health professionals (O'Hara and Harrell). A key ethical challenge for the therapist is determining when patients are reasonably ready or "competent" to gainsay therapeutic recommendations, or when patients can "reasonably" assume the risks inherent in the enjoyment of their moral and constitutional liberties and freedoms (Purtilo, 1988).
Meeting this kind of challenge requires an acute sensitivity on the therapist's part in judging when certain types of paternalistic interventions are warranted versus when patients may assume control and responsibility. While the empowerment model may not object to vesting decisionmaking authority in the provider at the beginning of rehabilitation, in ideal cases that power is increasingly channeled to the consumer as rehabilitation discharge nears. The goal is for patients to realize their right to engage the world on their terms and to enjoy the self-esteem and dignity of risk that derives from doing so (O'Hara and Harrell).
Familial and Social Obligations
Families play a critical role during the rehabilitation process, not only supporting their loved ones but also learning how to accommodate their needs after rehabilitation discharge. The nature and extent of familial duty that occurs by virtue of a member's becoming disabled is nevertheless problematic. Overwhelmed by the financial and personal toll that caring for someone with serious disability poses, families may feel that the burdens imposed on them by the individual's care needs are unreasonable. If the family defaults, does an individual's misfortune in sustaining a disability impose special obligations on society? The extent to which the disabled person's family assumes the responsibilities of care depends on the family's love, sense of values, and willingness to sacrifice, rather than on legal or constitutional mandates (Callahan). If both family and society repudiate a duty to care for the person with disability, then the rehabilitation itself is jeopardized.
The future of allocating rehabilitation services requires a moral consensus about what disability within human life means and whether and to what extent society has a duty to accommodate the needs of persons with disability. Because such a consensus about disability does not yet exist in contemporary American society, rehabilitation medicine is available largely on the basis of the ability to pay (Brody). Shrinking financial resources may preclude the provision of rehabilitation resources to those who desperately need but cannot afford them. Although condoning such a situation in an egalitarian society seems ethically repugnant (Purtilo, 1992), a marked reluctance, if not downright hostility, exists toward imposing social obligations—such as increased tax revenues—to improve care for persons with disabilities. In the face of moral arguments that the burdens resulting from disability should be lightened by spreading them as widely and equitably as possible, libertarians counter that because "I am not my brother's keeper," others' disability and its rehabilitation are not their concern (Will).
To the extent, however, that able-bodied persons accept the idea of valid social roles for persons with disabilities, social stigmas that have interfered with the latter's participation in mainstream American life may diminish. The implementation of the Americans with Disabilities Act may facilitate this change in attitude because it insists that greater opportunities be made available for persons with disability to enter the economic mainstream of American life. Furthermore, demographic projections indicate an astonishing rate of growth among elderly persons in the United States, many of whom will require rehabilitation services at some point in their lives. To the extent that they can influence the political will, access to rehabilitation resources may expand rather than shrink through legislative enactments.
If moral arguments are not sufficient to justify the allocation of rehabilitation services, certain purely material considerations might compel an examination of the merits of rehabilitation medicine. Extensive research indicates that the social costs of disability without rehabilitation are staggering (Brooks; Davidoff et al.). Reimbursement for rehabilitation services might be straightforward and noncontroversial, then, simply because of its cost-effectiveness.
Appeals to self-interest may also sustain an interest in rehabilitation's merit. As medical technology and improved lifestyle choices result in increased longevity, the need for rehabilitation services will doubtless increase. To the extent that living longer increases the probability of a disabling neurological or musculoskeletal impairment, Americans might seek to protect their own access to rehabilitation services by advocating an entitlement to such access for everyone else.
In any case, rehabilitation's objective of securing independence for its consumers fits admirably into an egalitarian culture's sociopolitical aspirations. Independence for persons with disability is the same thing as independence for the able-bodied: the ability to enjoy life as a chooser of ends and to participate in a just and democratic society. Much to its credit, and perhaps more than any other medical specialty, the ethos of rehabilitation medicine embodies these cherished ideals of individual freedom and liberty.
john d. banja (1995)
SEE ALSO: Autonomy; Beneficence; Care; Chronic Illness and Chronic Care; Competence; Disability; Family and Family Medicine; Healthcare Resources, Allocation of: Microallocation; Informed Consent; Life, Quality of; Long-Term Care; Professional-Patient Relationship; Teams, Healthcare
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