Ethical Issues in Rehabilitation Medicine

Janet F. Haas

A 59-year-old man suffered a left hemispheric cerebrovascular accident. Two weeks later, he was admitted to a rehabilitation unit for treatment of deficits resulting from expressive language impairment and right-sided weakness. He did not agree with the self-care, mobility, and speech goals proposed by the rehabilitation team. Rather, he was anxious to return to his home and work. His wife of 30 years was apprehensive about caring for him in light of his level of disability, and urged the team to continue therapy.

Patients, family members, and practitioners often disagree about the goals, processes, or utility of rehabilitation therapy. Health care practitioners face difficult dilemmas as they attempt to set a course that all parties will endorse. In this patient’s case, practitioners were torn between honoring the patient’s desire for discharge and respecting the concerns and wishes of his wife. They did not want to treat a patient who failed to provide informed consent, yet they realized that the patient’s wife was not prepared to care for him at home. They knew that training would improve his functional abilities and enhance his eventual return home.

Rehabilitation practitioners confront moral quandaries often during the course of practice. A single moral principle—such as that of autonomy or beneficence—may fail to outweigh other principles, yet choices must be made. Practitioners must attempt to reconcile and assign priority to conflicting moral obligations (1). Decisions of a moral nature are distinguishable from those governed by law, technology, religion, or politics. They focus on what is proper rather than on what is possible or legally permissible. Considerations of etiquette, cost, and convenience play an insignificant role in moral decision making.

The terms moral and ethical are closely related; both stress manners, customs, and character. Cicero apparently used the Latin word moralis to translate the Greek ethikos (2). Contemporary usage reflects a divergence of meaning, however. Ethics refers to theoretical and contemplative descriptions of values. Morality describes conduct—that is, whether behaviors are right or wrong. This chapter traces the development of ethical systems in medicine and discusses their application to rehabilitation practice. It describes moral conflicts inherent to issues frequently encountered in clinical rehabilitation practice and recommends approaches to resolve these dilemmas. Policy issues including resource allocation, health system reforms and costs, and responsibilities of rehabilitation professionals are discussed.

HISTORICAL DEVELOPMENT

Religious Influences

In the 5th century b.c., Hippocrates described scientific, technological, and ethical aspects of medical care (3). The Hippocratic Oath derived from the traditions of a religious sect known as the Pythagoreans. In swearing allegiance to the Oath, a small group of physicians on the Isle of Cos vowed secrecy and loyalty to their teachers and promised to seek the virtues of purity and holiness. Compelled to help patients and forbidden from harming them, physicians alone were qualified to determine how to treat sick patients.

Religious traditions influenced the development of medical ethics through the Middle Ages, when monks dominated medical practice, and beyond (4). Thereafter, Catholics incorporated principles of medical decision making into their moral theology (3). Protestants, too, have examined specific ethical topics in detail and integrated concepts of medical ethics into a larger, systematic theology (3). Orthodox Jews have linked Talmudic and rabbinical teachings to the practice of medicine, with emphasis on the preservation and sanctity of life (3).

Secular Influences

During the Age of Enlightenment, the influence of religion on medical morality diminished as secular theories of philosophical reasoning arose. Controversy flourished as scholars studied, debated, and published a range of theories of medical care (3).

Codes of medical practice developed over time in response to medical challenges. In 1789, an epidemic of typhoid created chaos in a British hospital as staff members assumed onerous and unfamiliar responsibilities. As tension heightened and some staff resigned, a retired physician, Thomas Percival, sought to restore calm by designing a code of professional conduct. He instructed physicians to address the needs of individual patients in preference to those of the larger society and to show “tenderness with steadiness and condescension
with authority” since they were to “inspire the minds of their patients with gratitude, respect, and confidence” (5). Percival’s words were repeated in the first professional code of ethics of the American Medical Association published in 1847.

Recent Developments

Medical ethics evolved relatively little over the ensuing years. But more recently, particularly during the past 40 years, the practice of medicine has evolved dramatically. So, too, has medical ethics. Technological advances have established a scientific basis for medical treatment. Developments in health care and the biological sciences have produced complex and difficult moral dilemmas that transcend discrete professional boundaries.

Callahan describes five factors that give rise to ethical tensions in health care (6). First, technologies such as renal dialysis, organ transplantation, genetic engineering, and embryonal transplantation have expanded our ability to intervene in nature. A strong social commitment to health care coupled with a compelling tendency to apply available technology has made it difficult to restrict the use of technology.

Second, medical resources are costly. When medicine could do little to help people, care tended to be cheap. But now that improved neonatal, emergency, and acute care interventions save many lives, the chronicity and cost of disease have skyrocketed. For more than 40 years, health care costs have risen substantially faster than personal income or the overall economy (7). At $2 trillion annually, health care expenditures now exceed one sixth of the American economy (8).

Callahan cites an expanded role of the public as a third factor prompting recognition of ethical issues (6). The solitary and secretive aura of Hippocratic medicine has been supplanted by health care that is conducted in an increasingly public arena. More than 80% of Americans die in hospitals. Taxpayers fund health care entitlement programs and support medical research. Research on human subjects is regulated by federally mandated Institutional Review Boards. Legislation is in place to protect patients and assure their privacy.

The language of rights has evolved as well. Support for individual rights in American society and enhanced respect for the rights of racial minorities, women, and disabled persons have directed attention to patients’ rights. In the medical context, respect for self-determination and personal dignity requires recognition that patients have a right to make their own decisions (3).

Finally, Callahan cites increasing concern about quality of life, since many lives are now preserved and extended by medical interventions. We may wonder, however, what kind of life some survivors will lead (9). At times, the burdens of cure appear to outweigh its benefits (10).

Dramatic change has spread throughout the health care insurance industry in recent years. Mechanisms of reimbursement for health care have shifted due to the emergence of managed care and other for-profit systems. Expectations concerning the relationships and roles of payers, practitioners, and consumers have been profoundly altered.

What About Rehabilitation?

Until the recent past, little formal attention was directed to ethical aspects of rehabilitative care. A number of explanations exist (11). Still a relatively young field, rehabilitation medicine has sought to acquire recognition and acceptance by the medical community (12). Its chronic care dilemmas may seem to lack the drama of life-and-death decisions. Often patients are treated over an extended period of time by a broad range of practitioners, none of whom possesses clear responsibility for addressing ethical issues.

Recognition of moral dilemmas inherent to chronic care has increased interest in ethical aspects of rehabilitation. Questions have been raised about duties of professionals, dynamics of professional-patient relationships, roles and expectations of family members, and goals of care (11, 13, 14, 15, 16, 17, 18, 19, 20, 21, 22, 23, 24, 25, 26, 27, 28, 29). A discussion of fundamental ethical principles furnishes a conceptual framework to study issues relevant to rehabilitation medicine.

Ethical Principles: Beneficence, Autonomy, and Justice

The term beneficence connotes kindness, charity, and the doing of good; it refers to a moral obligation to help other people, refrain from harming them, and attempt to balance benefits with harms. In the health care setting, beneficence entails an obligation to promote the health and well-being of patients and to prevent disease, injury, pain, and suffering (2).

Whether beneficence can be assured is uncertain when patients’ values conflict with traditional medical values of healing and care. Differences of opinion among patients, family members, and professionals about the best interests of patients or criteria for a good quality of life are not easily resolved. Discrepant interests may be difficult to balance within a moral framework. Beauchamp and Mcullough suggest that “beneficence includes the obligation to balance benefits against harms, benefits against alternative benefits, and harms against alternative harms” (4).

The principle of autonomy is grounded in the notion of respect for the values and beliefs of other people. Americans are entitled to privacy and to make decisions about their lives. They are perceived as possessing a right to self-determination that ensures freedom to make personal choices and resist the intervention of others. Within the context of health care, autonomy underlies the medical doctrine of informed consent. There is an obligation to inform patients accurately about their diagnoses and treatment alternatives, as well as to seek their permission before instituting treatment. Decisions are respected, even if they appear to be unwise (2, 4).

Many authors describe tension between the principle of beneficence, which requires acting in a patient’s best interests, and that of autonomy, which entails respecting patient choices (4, 30). Balancing the two principles is a perpetual struggle for health care givers who consider certain decisions of patients to be harmful. It is not clear how to view patient behavior when patient choices seem at odds with information presented to them. To Englehardt, “the moral obligation to
respect persons will often constrain physicians to acquiesce in patients’ choices—choices that most likely will lead to the loss of important goods” (30). In everyday practice, health care givers may be tempted to act paternalistically by restricting patient freedom to make autonomous choices if those choices appear to compromise the patient’s best interests.

The principle of justice concerns questions of what is due to whom and how to distribute the burdens and benefits of living in a society. An egalitarian model of distribution obliges society to provide all its members with a fair share of health care resources and to treat people equitably. However, scarcity of resources or competition for them can create conflict (2). Is it fairer for people to share social goods equally, or for those who have less to be given more?

Americans have yet to define the basic medical services that will be provided for all citizens. For example, despite the fact that sexually transmitted diseases are relatively common and may present public health hazards, some people receive neither prevention nor treatment efforts. But other treatments, such as organ transplants or elective cosmetic surgery, appear to be readily available to some patients. Entitlement programs in certain states pay for procedures not funded in others. Emergency treatments may be generally available, but aftercare and rehabilitation to improve the lives saved may not be funded adequately. Millions of Americans, many of whom work, do not qualify for publicly funded insurance programs, yet cannot afford to buy private health care insurance. Even for those who have insurance, reimbursement plans may provide vastly differing levels of coverage.

Concern for individual dignity and choice has overshadowed a holistic view of society’s needs. Callahan ponders what kind of medicine is needed by a society which must address other needs, including education, housing, welfare, and culture (9). Determining how much health care to support spurs us to reflect on how we want to live within our larger society. Fundamental questions of meaning are not easy to answer. In contrast to other developed nations which may possess a strong orientation to community, Americans have lagged in developing and implementing a sound health care delivery system based on a just social policy.

CLINICAL PRACTICE ISSUES

Acute care physicians attempt to save lives, relieve symptoms, reverse the course of pathologic processes, and discharge medically stable patients. Unlike acute care medicine, rehabilitation does not center on a sick patient whom treatment is expected to cure. Rather, rehabilitation practitioners treat dysfunctions that are chronic, often irreversible, and rarely curable. Residual disability may well persist throughout a person’s life.

Medical rehabilitative care addresses impairment caused by pathologic processes that include disease, accident, and congenital abnormality. Disabled persons experience restricted ability to perform certain functions. When unable to execute activities important to role fulfillment, a person is said to be handicapped (31). Rehabilitation therapy attempts to ameliorate handicap by restoring skills and capabilities through functional retraining and environmental adaptation. Many professionals —including, but not limited to, physicians, nurses, psychologists, social workers, and educators, as well as physical, speech, occupational, recreational, and vocational therapists— contribute to this effort. They must reach beyond pathology and physiologic dysfunction to understand the unique familial, social, vocational, psychological, and financial dimensions of patients. Successful rehabilitation requires attention not only to medical but to nonmedical factors ranging from skin tolerance to household layout and availability of caregivers.

The need for a team of rehabilitation professionals and family members to engage in each patient’s treatment leads to complex relationships that may be portrayed by three points of a triangle representing patient; family, generally including several people; and health care team, including practitioners of multiple disciplines. Those at each point share concerns with others but harbor unique considerations as well. Competing rights and obligations of patients, family members, and practitioners, and blurred responsibilities and loyalties can cause confusion or conflict.

Following the seminal description of ethical issues in rehabilitation medicine in the Hastings Center Report in 1987, Kirschner studied ethical issues of greatest concern to rehabilitation clinicians (17, 32). Practicing clinicians were asked to describe ethical conflicts encountered in daily practice. A broad range of clinicians listed four primary issues: reimbursement and allocation of scarce resources; determination of rehabilitation goals; compromised decision-making capacity in patients; and concerns about confidentiality (32). They considered conflicts among the treatment team especially troubling. Practitioners expressed unease about balancing their obligations to payers with their roles as patient advocates. How to ensure justice in treatment decisions worried them.

In another study, registered nurses, many of whom held management positions, reported concern about misallocation of medical resources—including both overtreatment and suboptimal treatment of patients (33). They questioned how to assure an optimal balance of providing good and avoiding harm while respecting patient autonomy. Ethical issues identified in similar surveys (Table 20-1) are discussed in this chapter within the context of clinical and policy dilemmas inherent to rehabilitation care.

Selection of Patients

Provision of medical care in the United States does not necessarily reflect need for it; in 2007, more than 47 million Americans lacked health insurance, and over one third of the population under the age of 65 was uninsured at some point in that year or in 2006 (34). Even for patients who are insured by Medicare, studies have shown that race, income level, and geography affect the care received (35). Many patients may not be entitled to reimbursement for rehabilitation, nor is rehabilitative care guaranteed for those whose lives have been saved by acute care interventions.

TABLE 20.1 Clinical Practice to Rehabilitation Care

Clinical Practice Issues	Policy Issues
Selection of patients Goal setting for patients Patient-practitioner relationships Professional and team issues Duties and rights of family members Quality of life and termination of treatment	Allocation of resources Medical insurance and implications for rehabilitation Professional responsibilities

Rehabilitation practitioners screen potential patients before selecting those who will receive treatment. Providers recognize that not all patients will benefit from rehabilitation therapy, since some are too ill to participate in therapy or have impairments that are difficult to rehabilitate, while others have relatively insignificant functional impairment (36). Assessment of prospective patients requires practitioners to review information derived from hospital records and consult with referring and other treating professionals. They may also examine patients or interview family members.

Because treatment requires patients to solve problems by applying new approaches to their functional needs, their ability to learn and retain information is considered crucial to successful rehabilitation. A person’s age and predicted course of recovery also influence a decision to initiate care. Those patients who are anticipated to make significant progress are usually viewed as good candidates for rehabilitation despite severe dysfunction.

Practitioners explore nonmedical parameters in admission decisions. Particular attention is directed to whether family members are physically and emotionally available to help patients, because strong social support systems correlate with positive patient outcomes (37). Financial capacity is a powerful determinant of access to services, since gains made during treatment are more likely to be retained if financial resources are available for further services or equipment as needed.

Features of the rehabilitation unit itself influence selection of patients. Some units specialize in treatment of specific disorders or impairments. Others emphasize training patients for work or independent living. Fluctuating bed availability or staffing patterns may affect selection such that surplus program capacity at a given time may prompt admission of patients who might otherwise be rejected (16).

Values

Although practitioners are guided in the selection process by a patient’s potential to benefit, some professionals may neglect evidence-based information regarding rehabilitation prognosis. Ability to pay and the burden of care that staff are likely to experience also influence decisions, yet the fact that admission criteria are not publicly disclosed not only confers significant flexibility on decision makers but creates a potential for injustice as a result of bias or subjectivity. A lack of training with respect to moral dilemmas may cause practitioners to make judgments that reflect their personal belief systems and values (16). Decisions may also be influenced by perceptions that society desires to save money in its care for disabled persons, or by practitioner bias about the likelihood of good rehabilitation outcomes in older patients (17). Decisions may be made without sufficient understanding of the body of evidence-based information regarding rehabilitation prognosis.

Dilemmas in selection abound. Who should be selected: a patient with considerable need but a relatively poor prognosis, or one with lesser need and disability, but the likelihood of a better outcome? A young person who will apply his or her training throughout a lengthy life span, or an older person with few remaining years despite his contributions to society over a lifetime? How much treatment should be available to patients who bear responsibility for their disability, or for those who have been noncompliant with past treatment?

Our current approach to patient selection seems to favor those already well off. Englehardt describes the impact of lotteries: a “natural lottery” of one’s talents and abilities, diseases and illnesses; and a “social lottery” that includes educational and work status, financial and insurance profiles, and social attractiveness (38). “Winners” can navigate complicated medical systems to gain assistance coping with disease, but “losers” may be uninformed about even the availability of services and resources. Patients disadvantaged by socioeconomic factors may experience restricted access to rehabilitation, but absent an explanation for this rejection, they are unlikely to challenge selection decisions effectively.

Recommendations

Potential for injustice inheres to a system that fails to provide clear criteria or standards for those who make difficult selection determinations. Although screening is necessary to assure that patients are medically stable and to demonstrate that they have remediable functional disabilities, the screening process has significant shortcomings. Practitioners should standardize selection guidelines and formulate them in writing. Reasons for rejecting patients, and a commitment to reevaluating those patients in the future, should be assured. Otherwise, a single decision made relatively early in the course of disease may preclude rehabilitative care entirely. A mechanism for patient appeals could provide valuable checks and balances to the selection process.

Goal Setting for Individual Patients

In order to develop patient treatment plans, staff members discuss the requirements of the postdischarge environment with patients and their family members. Initial treatment goals are outlined, reviewed, and adjusted during the course of therapy to ensure the relevance and feasibility of patient goals over time.

Authors who have addressed goal setting during patient care include Trieschman, who emphasizes the importance of consulting with patients and family members to cast and refine goals (22, 24, 25, 39, 40, 41, 42). She cautions caregivers to refrain from imposing goals on patients who may reject them in the long run anyway and stresses the importance of assuring transfer of skills from the rehabilitation setting to the home environment (42). Becker et al. emphasize the need to promote close interaction among family and staff members and to assure that the full team resolves discrepancies among treatment goals (39).

Problems of Current Practice

Although rehabilitation practitioners encourage patients to participate in designing their treatment program, this may be difficult for some patients. On admission to rehabilitation, many patients are exhausted by pain, weakness, fatigue, depression, or anxiety. Few come to terms with new or exacerbated disability and the demands of their condition absent real-life and home experiences that could illuminate their postdischarge needs (25, 43

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