Values in rehabilitation: happiness, freedom and fairness.

Health care is increasingly shaped by three values, happiness, freedom, and fairness. Rehabilitation faces special challenges from each of these values. The demand for and cost of rehabilitation, the quality of life for the patient, and the impact on family and caregivers raise questions about the balance of happiness over suffering achieved. Patient freedom may be compromised in rehabilitation due to attenuation of informed consent and confidentiality and the possibility of provider conflicts of interest. Fairness issues are raised by patient selection, termination of treatment, and the overall inequities in the American health care system.

There are many important values in health care. But there is a core value that animates the very purpose of health care: happiness. Doctors, nurses, and other health care professionals are motivated to preserve and enhance their patients' happiness, or, to put it in the more familiar converse, to prevent and alleviate their patients' suffering.

Since the middle of the nineteen-sixties, another value has moved into greater prominence in health care contexts. Freedom, often expressed as the need to defend patient autonomy, has become a prominent value. Our new legal and moral consensus on informed consent is expressive of the rise of this value.

In the last several years another value has moved to the center of ethical concern in health care: fairness. Who gets health care and who doesn't? Should we develop explicit rationing systems to expand access and limit health care costs? Is our delivery system fair and how can it be made more fair?

These three important values, happiness, freedom, and fairness, now define the main parameters for consideration of ethical issues in health care. Commitment to the first value obliges us to try to maximize happiness and minimize suffering in our actions and our policies. Observance of the second value creates a duty to respect persons' autonomy and to develop policies that do so systematically. (Dougherty, 1988)

The third value, fairness, is more difficult to define briefly but a scheme developed by philosopher John Rawls is helpful. A society is fair, on this account, when its main institutional arrangements would have been agreed to by all its members under conditions free of bias. Since bias is our natural condition, Rawls offers a hypothetical model of a "veil of ignorance" behind which each of us is denied all substantive self-knowledge-of race, gender, intelligence, religion, and so forth. Without the knowledge that makes bias possible, we must agree on institutional structures for a new society we will all enter. In this condition, each of us would support social arrangements designed to make the worst possible life the best it can be, because each of us might have the worst life. Since this is what ideally bias-free people would agree to, fairness demands that we adopt the strategy of making the worst life the best it can be when we make choices in the real world. (Rawls, 1971)

These three central values-happiness, freedom, and fairness-can be used to examine the ethical dimensions of some important features of rehabilitation.

Maximize Happiness

Embracing the value of happiness requires that we choose acts and adopt rules to bring about the greatest good for the greatest number. This greatest good is typically named happiness by philosophers, but it must be conceived in the broadest possible human terms. People seek happiness through physical pleasure, but also, and more frequently, through the whole range of psychological states of satisfaction and well-being. Enjoyment of health and of a high quality of life is a potent source of human happiness.

Seeking to create the greatest happiness by our actions and policies also involves trying to minimize pain, suffering, and frustration. Sometimes every alternative involves bringing some unhappiness about. In these cases, the value of happiness directs us to choose the path causing the least unhappiness. Often, our choices have mixed results involving both happiness and unhappiness in varying degrees for multiple others. In these situations, the right action or policy is the one with the best ratio of happiness to unhappiness, counting each person affected by the choice and calculating the degree of the impact on them.

Much of the work of rehabilitation has this commitment to happiness at its core. Rarely is curing a patient a reasonable goal. Instead, the goals of rehabilitative care are maintaining, enhancing, restoring, and compensating for disabling conditions; promoting the highest possible quality of life; and integrating the patient into his or her family, community, and job or vocation. (Haas, 1986; Melvin, 1989) These goals are particular ways of trying to achieve what the value of happiness dictates; maximizing patients' physical and psychological well-being.

But there are challenges to rehabilitation from the perspective of maximizing happiness. First, successes in emergency and acute interventions (especially in cases of trauma, stroke, and neonatal care) have saved many lives that would have been lost just years ago. Now 30 million Americans have some disability or handicapping condition; 10% of Americans under retirement age claim a disability that impairs the ability to work. Rehabilitation needs are especially great among the elderly: 50% of hospital-based rehabilitation is provided to elderly patients. And their numbers are swelling. From 1970 to 1980 the numbers of Americans over 75 years old rose from 5.5 million to 10 million, while the population over 85 years old doubled. It is estimated that there will be 100,000 Americans aged 100 or more by the year 2000. (Caplan et al., 1988; Celani, 1987; Melvin, 1988; Steinberg, 1989)

The challenge implied by these numbers can be put simply. Will it maximize happiness across American society to try to satisfy all of this projected need for rehabilitation; or could more happiness be produced by other uses of society's resources and efforts? This is a hard question, perhaps even a callous question, but it is a question forced on us if maximizing happiness is an ethical imperative. The point of the question is sharper still when some of the costs in dollars are calculated. The average cost of a permanent disabling head or spinal injury is estimated to be $100,000. There are 50,000 new cases annually, producing a total cost of $5 billion per year. Total disability care was estimated to be $6.9 billion in 1987. (Caplan et al., 1988; Celani, 1987)

There are personal costs involved as well. What does it mean to save a life that would other wise have been lost? Does it mean greater happiness and less suffering for the patient, or doesn't it often mean less happiness and greater suffering? Acute care interventions can often add years to patients' lives, but can rehabilitation, as the saying goes, "add life to their years"? (Freed, 1984; Maas, 1989)

Such quality of life issues abound in rehabilitation and some of them turn directly on the calculus of happiness and suffering involved. Rehabilitation patients are not always grateful nor always capable of gratitude. They sometimes hate their care-givers for the demands they impose and for being free of disabilities themselves. Sometimes they wish for death. (Freed, 1984; Gans, 1983)

There is happiness and suffering created for the families of rehabilitation patients as well. They are crucial partners in providing care and motivation. They share the struggles, victories, and defeats. Families live with feelings of anger, guilt, anxiety, helplessness, even hatred, directed toward the patient, providers, payers, even themselves. They frequently sacrifice opportunities for socializing and recreation- conditions for their own happiness. From the perspective of this value, care of persons with disabilities at home is a mixed blessing. On the one hand, for psychological and financial reasons home care is preferable. Families can make all the difference in whether or not there is a successful outcome. On the other hand, families are being asked to bear extraordinary care burdens just as the family as we have known it is under extraordinary social pressure. And not all patients have families or have functional families who will care and advocate for them. (Caplan, et al., 1988; Maddad, 1986; Watson, 1987)

From the rehabilitation professional's point of view, there are new challenges working with families and with other health care professionals in a team. Inevitably, there are conflicts of responsibility and authority to cope with and the added time and costs of team conferences and communication with all the key providers. Moreover, providers of care- both health care professionals and families- face the constant threat of burnout, of "demoralized altruism." In spite of the fact that there are few cures of a traditional nature in rehabilitation, health care professionals and families tend to be therapeutic optimists, hoping always that additional measures can enhance or maintain patient abilities. But then there is decline and increased disability, the buoyancy of therapeutic optimism can yield to feelings of powerlessness, apathy, lowered self-image, and even hatred of the patient. This may mean more suffering and less happiness for all involved. (Melvin, 1989; Osborn et al., 1988; Gans, 1983)

There is no simple formula for calculating the right balance of happiness and suffering in so complex an area, but these considerations raise worries about our ability to maximize happiness in rehabilitation.

Freedom

There are many times when we prefer freedom over happiness, when it is more important to be able to do something than to feel happy doing it. A large part of rehabilitation relates not to the value of happiness, but more directly to the value of freedom. Some of the key goals of rehabilitation are directly pertinent to freedom; to maintain, restore, or compensate for patient independence; to allow a patient a greater range of lifestyle and vocational choices; to enhance patient autonomy or slow its decline.

There are challenges facing rehabilitation regarding freedom as well. In the context of rehabilitation, there are frequently problems at the heart of the new consensus on patient autonomy, problems involving informed consent. The norm in most acute care contexts now is that any competent adult has the right to make decisions about his or her care, even foolish decisions, even life-threatening decisions. Generally a psychiatrist or court must determine patient incompetence; otherwise patient competence is assumed. Competent patients have a right of self-determination, a right to be fully informed about medical choices at hand and to make personal choices free of coercions. (Dougherty, 1988)

But in rehabilitation, a patient may be asked to sign a consent for a surgery or medication but not for physical therapy or vocational counseling. After trauma, or when there is disfigurement, loss of a limb, or inability to speak a patient may be depressed or in denial about his or her disability. In these cases, families and health care professionals may feel justified in imposing rehabilitation without consent or even in the face of a patient refusal. (Caplan et al., 1988)

In such circumstances, the more traditional medical norm of paternalism has strong appeal. Since the patient is unable to fully appreciate the benefit offered, like a child, he or she must be coerced to accept it for his or her own sake. Justification is prospective: "Someday you'll thank me for this." Perhaps this will be true, perhaps it won't. Even in the best case, honesty demands an admission that when informed consent is not respected, patient autonomy, a freedom so important in other medical contexts, is being overridden by other values.

Providers may be at legal risk in such situations. A patient who was legally competent and yet is not offered a choice about rehabilitation, or whose choice is coerced, may have grounds to sue for battery. A lawsuit might also arise out of a provider's good faith judgment to rely on a family member's proxy consent in the case of presumed patient incompetence if that family member is not designated by statute or a court to be the proxy decision-maker. In either case, a patient might successfully refuse to pay for rehabilitation already received on the grounds that no legally proper consent was given for it. (Banja, 1986)

Another important aspect of freedom is the ability to control information about oneself. Information, especially information about health conditions, can be it powerful means of determining employability, insurability, and many life opportunities. Therefore, a right of patient confidentiality has evolved as part of the protection of patient freedom.

But the nature of team-based and home-delivered care puts special pressures on the confidentiality of rehabilitation patients. Information about their conditions, progress, and prognosis must be shared with many others. This sharing is for the benefit of the patient, of course, but like the exception to informed consent, this blurring of the focus of patient rights means that values other than the patient's freedom are controlling health care choices. (Caplan et al., 1988)

The role of third party payers is important here. Rehabilitation professionals, especially those in private rehabilitation, must frequently write reports about a patient's physical, vocational, and motivational status for insurance companies. Such reports typically include material provided to the health care professional by the patient as well as assessments by and conversations with other members of the rehabilitation team, employers, and family members. Generally the patient is asked to sign a release allowing these disclosures, but often the form is a "blanket release" that is overly broad, confusing to patients, and does not specify by name all the individuals and entities to whom the information will be released. (Kaiser & Brown, 1988)

Reflection on the role of third party payers in private rehabilitation raises a final issue that has an impact on patient freedom. The overall justification for the unique roles and privileges of health care professionals is that patients are unable to effect their own wills in this overwhelmingly complex area. Thus they turn to experts who, through their professions have committed themselves to fiduciary agency; that is, to placing the interests of their patients ahead of their own or anyone else's interests.

But this may not always be the case among some rehabilitation professionals, especially in the private, for-profit sector. There may at times be a conflict of interests between patient and insurance company. Advocacy for the patient can take second place to concern for cost-effective care from the payer's perspective. In an increasingly competitive private rehabilitation market, third party payers may become the clients. Their interests in limiting benefits and costly services or in speedy returns to work may conflict with the desires of patients and even with their best medical interests. The demands of business may take precedence over concerns to deliver optimal human services. In the worst cases, this may mean serving the interests of financial organizations instead of persons with disabilities, effectively abandoning the principle of fiduciary responsibility to the patient. (Nadolsky, 1979, 1986)

This problem is most obvious in the private sector but public and nonprofit rehabilitation face similar challenges. As budgets tighten and demand expands, pressures mount for shifting primary accountability to financial officers and away from patients. In both cases, confused or reordered fiduciary responsibilities may have the effect of limiting patients' freedoms by denying desired or needed rehabilitation services.

Fairness

The new third value in health care is fairness, the demand that patients have equitable access to health care services. In rehabilitation, this need not and probably should not mean equal access to all with equal needs, but it should mean access to a decent array of rehabilitation services for all who need them. Fairness, as judged from the impartial view of persons placed behind a hypothetical veil of ignorance, demands that everyone who can draw reasonable benefits from rehabilitation should have a minimally decent amount of services provided. But contemporary rehabilitation faces a number of problems related to this conception of fairness.

Many questions can be raised about the fairness of patient selection. Unlike most other areas of modem health care, rehabilitation professionals, especially physiatrists, explicitly choose their patients. Typically a physician in an acute care setting makes a referral to a physiatrist who screens potential patients. Clinical factors, especially diagnosis and prognosis, properly play key roles. But so do a number of nonclinical factors. It is here that fairness issues arise. (Caplan et al., 1988; Purtilo, 1988)

Nonclinical assessments can include potential for benefit, likely burden on rehabilitation resources, age of the patient, ability to learn, geographic and emotional availability of family support, social situation, vocational background and objectives, probable disposition at discharge, degree of patient responsibility for the disability, patient attitude, and potential quality of life. The central problem with all of these considerations, as important as they may be, is the subjective character of their appraisal. When an assessment of any sort is lacking in clear, objective guidelines, there is potential for bias and therefore for unfairness. With all the best motives, physiatrists may choose patients they unconsciously favor for reasons that could not withstand public scrutiny or for no good reasons at all. (Haas, 1989)

Moreover, assessment of a potential patient's ability to pay based on his or her overall financial situation or insurance status is also a key factor in most screening. Even patients with health insurance may find that the coverage they thought was comprehensive is inadequate to cover the full range of rehabilitation services they could profit from. This means that those who are among the truly worst off-persons with disabilities who are also poor and uninsured or underinsured- are least likely to be selected for rehabilitation. But again, the standard for fairness outlined above calls for making the worst-off lives the best they can be.

Rarely are potential rehabilitation patients aware of the factors that determine a decision to accept or reject them for a rehabilitation program. Consequently, if they are rejected they will not know why and will therefore be unable to correct any errors that may have lead to the negative outcome or to appeal against any injustice in the appraisal. (Haas, 1989)

In the face of a selection process that is open to bias, a reminder of some of the obvious facts about this patient population provides a useful perspective. There are powerful stigmas attached to patients who lack capacity for cure in a society that prizes health, who cannot communicate in an information society, who are aged in a youth-oriented culture, who cannot work in a society that rewards productivity, who are dependent in a culture that glorifies independence.

There are other persistent stigmas. In spite of considerable advances in the last several decades, many patients may benefit less from rehabilitation simply by virtue of being female in a male-dominated society. Some of the very same stereotypes often applied to persons with disabilities are frequently applied to women; passive, dependent, helpless. This puts women with disabilities in an especially difficult position. Menz, et al., have shown recently that there are gender inequities in access, services, and benefits of vocational rehabilitation. Their study showed that men and women who entered rehabilitation with the same financial situations exited with remarkably different fortunes; the women making only 67% of the men's earnings at discharge. Women with disabilities are thus considerably less able to enjoy economic self-sufficiency as a result of rehabilitation. (Menz et al., 1989)

There is also reason to be concerned about the growth of the private, for-profit rehabilitation sector in terms of bias in patient selection. These agencies have a very good success rate placing their patients in the working world. But this is partly due to the fact that they select patients who have less severe disabilities and solid work records. Publicly supported programs are then left with the more difficult cases and the necessity of providing a more comprehensive array of services. (Kaiser & Brown, 1988; Nadolsky, 1979)

Fairness questions surround the termination of rehabilitation treatment as well. A unique aspect of rehabilitation is that health care professionals, not the patient or the family, typically initiate the termination of treatment. The key notion in this decision is the concept of a "plateau." Typically a patient reaches a plateau when rehabilitation goals have been met, progress toward goals has stalled, or when a patient becomes noncompliant. Most of these assessments are not based on objective criteria and are therefore subject to the same concerns about bias sketched above. A bad" patient with poor emotional support may reach a plateau earlier than other patients with similar disabilities simply because he or she has become frustrating to work with. Plainly, beyond some level of frustration and noncompliance there is little justification for the continued use of rehabilitation professionals and resources. The difficulty lies in defining that point and in applying it uniformly to all patients in similar situations. (Caplan et al., 1988; Haas, 1986)

A deeper concern here is the influence of patient ability to pay on the professional decision that a plateau has been reached. Too often financial constraints related to exhaustion of third party coverage set the stage for a termination decision. There is clear potential here for unfaimess-cutting some of the least well-off from promising services for lack of ability to pay. (Purtilo, 1988)

Finally, the fairness question has application at the systemic level. American health care is facing both a cost and access crisis. Americans spend more per capita and more of our GNP on health care than any nation, while 38 million among us have no health insurance and millions of others are underinsured. Any solution that addresses both problems of cost and access will have to face the question of rationing seriously. How do we limit the introduction and use of expensive medical technology? How do we prevent wasteful uses of death-prolonging technology? How do we rein in the proliferation of boutique medicine" and redirect our talents and resources to helping those most in need? How do we determine what is a decent minimum of health care for all Americans? Then how do we afford it?

Our recent experience with cost containment measures is not reassuring. The application of DRGs to Medicare reimbursement has at once created a boom in DRG-exempt rehabilitation hospitals and also presented rehabilitation professionals with a population of more acutely ill patients competing for rehabilitation beds and services. Even though their patients are sicker than ever before, rehabilitation hospitals are shortening their own LOS, returning patients who previously would have been hospitalized to the care of families and home health care agencies. More patients than ever before, especially elderly patients on Medicare, are being transferred back to acute care hospital after rehabilitation admission, suggesting that their original discharge was premature. (Hickey, 1987; Kane et al., 1987)

The fate of patients sent home has been poorly monitored in general. Denials of Medicare reimbursement to some home health care services continues to be a major barrier to effective delivery of care at home. Though home rehabilitation is often preferable for all involved, more research on aftercare is needed to insure that home health care is effective, humane, and fair. (Wilson & Rinke, 1988)

Conclusion

What practical conclusions can be drawn from these reflections?

First, we must come to grips with the ethical dimensions of the dramatic life-saving power of contemporary health care. This means admitting in some cases that, judged in terms of the happiness of the patient involved, life-saving interventions are not always a blessing. Sometimes they save a life only to extend that person's suffering. The realities of rehabilitation for such patients need to be conveyed by rehabilitation professionals to their peers in acute care settings and to the general public. This is not to advocate euthanasia, nor to propose a facile quality of life standard. It is simply to admit that heroic measures often provide a disservice to the patient. This admission will be increasingly forced on health care providers by the spread of living wills and other instruments for advanced directives that are empowering patients to decline such treatments and the rehabilitation efforts that follow them.

Second, there should be greater frankness in discussing informed consent in rehabilitation contexts with patients and with their families. This includes full disclosure of possible conflicts of interest. At the same time, the inherent limitations of informed consent in rehabilitation must be aired more thoroughly. Concern for a patient's own long term freedom may be justification for abridgement of some of the dimensions of informed consent by family members and rehabilitation professionals. When the benefits of rehabilitation are clear and the trauma of a recent disability leads a patient to decline rehabilitation, ways should be devised to accept the consent of family members without the need for a declaration of patient incompetence.

Third, rehabilitation professionals should take the lead in demanding a more equitable system for delivering rehabilitation. There should be no financial barriers to a decent level of care for all Americans. Health care professionals ought not to be placed in the position of making decisions about basic rehabilitation services on the grounds of patient ability to pay. And no patient should reach a plateau because of lack of insurance. Many of these realities are hidden from the general public, who only discover them in moments of private tragedy. Rehabilitation professionals can make these issues a part of the public debate on how to improve our health care delivery system.

Finally, more attention must be given to the central role of value judgments in rehabilitation both in making clinical decisions and in formulating policy. Because rehabilitation lacks the biological norms of cure-oriented health care and is instead committed to a highly individuated style of health care, values have always played a key role. Care is directed by commitment to patient happiness or reduction of suffering. In the last several decades, patient freedom has become a more central focus. In the future, fairness will be an insistent value. Rehabilitation professionals must become more sensitive to the roles of these three fundamental values, more comfortable in speaking about them explicitly, and more able to use them to make hard choices. This will give rehabilitation a better chance to enhance patient happiness and protect their freedom in a system that is fair to all.

References

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  Received:     July 1989
  Revised:      October 1989
  Accepted:     December 1989