Autonomy-based informed consent: ethical implications for patient noncompliance.

Autonomy-Based Informed Consent: Ethical Implications for Patient Noncompliance 

The problems presented by the noncompliant patient are not new to health care professionals, including physical therapists. Although many of the factors that influence the incidence of noncompliance have been studied, important ethical concerns are often overlooked. This fact has led many health care professionals to make the following assumptions: 1) All cases of noncompliance are problems in need of a solution, 2) the solution to the problem of noncompliance is compliance, 3) all instances of compliance are nonproblematical, and 4) the locus of the problem of noncompliance is the patient. In this article, the issue of patient noncompliance is examined based on an analysis of the moral foundations of informed consent. The above assumptions are shown to be problematic from the moral point of view. Three patient cases are presented to highlight some of the implications for physical therapists who encounter noncompliant patients. Understanding the moral foundation of informed consent can help guide therapists in their communication with all patients, and especially in their interactions with noncompliant patients. [Coy JA: Autonomy-based informed consent: Ethical implications for patient noncompliance. Phys Ther 69:826-833, 1989]

Key Words: Ethics; Informed consent; Patient compliance; Physical therapy profession, professional issues.

The problem of noncompliance in medical treatment is a major concern of many health care professionals, and it arises in a range of situations. Patients refuse roentgenograms and blood tests. They do not take prescription drugs as prescribed, fail to follow a physician's recommendation to stop smoking, or ignore a nutritionist's recommendation of a low-salt diet. They refuse lifesaving surgery or blood transfusions. The list goes on. The problems presented by the noncompliant patient are also not new to the physical therapist. These problems arise in institutional settings, where patients frequently refuse to participate in physical therapy, and in home care and private practice settings, where patients often do not follow through with home exercise programs.

Presumably, the most troubling aspect of noncompliance is that noncompliance generally leads to a less-than-optimal medical outcome. Because optimizing a patient's health is usually perceived to be the primary goal of the health care professional, it is not surprising that noncompliance is viewed as being a significant problem in need of a solution. (There is evidence, however, to suggest that the issue is not quite this simple. Even when patient compliance leads to a better medical outcome than would have been achieved through compliance, health care professionals still tend to believe that the act of noncompliance is a problem.[1] Other issues such as power and control, therefore, may be involved.) In an attempt to more fully understand the problem of noncompliance and to find solutions, investigators have studied many of the pragmatic aspects of noncompliance, such as the incidence of noncompliance,[2,3] factors that influence compliance,[4-6] and methods for motivating patients.[3,5,7-9] However, the issue of noncompliance--whether one is considering prescription drugs, surgery, routine hospital care, or physical therapy services--involves not only such practical problems but important ethical concerns as well,[10] concerns that are often overlooked or even actively ignored. In casting the issue as the "problem of noncompliance," the tendency to ignore the ethical aspects of the issue is exacerbated, which leads many health care providers, including physical therapists, to make the following assumptions: 1. All instances of noncompliance are

problems in need of a solution. 2. The solution to the problem of

noncompliance is compliance. 3. All instances of compliance are

morally nonproblematical. 4. The locus of the problem of

noncompliance is the patient. From a moral point of view, however, such assumptions are objectionable. By examining the ethical principles that serve as the moral foundation for the doctrine of informed consent, these objections can be clarified. I will argue that two different, and often conflicting, principles have served as that moral foundation: 1) the Principle of Beneficence (producing benefits, or good outcomes, for a patient) and 2) the Principle of Autonomy (respecting a patient's right to self-determination). Furthermore, it is the emphasis on producing good outcomes that has led many health care providers to make these assumptions about patient noncompliance. Based on the ethical concerns raised by the Principle of Autonomy, physical therapists may need to alter some of their beliefs about patient noncompliance. Approaching the issue of noncompliance from an autonomy-enhancing perspective highlights important ethical concerns for the conduct and responsibilities of physical therapists and other health care professionals, and for patients as well.

Moral Foundations of Informed Consent

Informed consent, in a health care setting, is the procedure whereby patients consent to--or refuse--a medical intervention based on information provided by a health care professional regarding the nature and potential consequences of the proposed medical intervention. Although many health care professionals and patients perceive informed consent as merely a legal formality designed to protect the professional from malpractice litigation,[11] one goal of informed consent--from both legal and moral perspectives--is for the patient to make important decisions regarding his or her medical care. Such decision making helps ensure that the medical intervention will serve the patient's best interests. Functionally, two different ethical principles have served as the moral foundation of the doctrine of informed consent: 1) the Principle of Autonomy and 2) the Principle of Beneficence. In Doctors' Dilemmas: Moral Conflict and Medical Care, Samuel Gorovitz describes these two principles:

Because we care about the well-being

of individual persons, we ... grant a

prominent place in the structure of our

moral outlook to ... the Principle of

Beneficence. That principle, simply

stated, holds that one ought to do

good. Doing good means benefiting

people, helping them, acting--out of

respect for their interests--in a way

that serves their interests.[12]

Because we respect individuals, we

[also] subscribe to what has been

called the Principle of Autonomy, the

view that individuals are entitled to be

and do as they see fit, so long as they

do not violate the comparable rights of

others. No person is to be merely the

instrument of another person's plans;

no person is to be treated in a manner

that is blind to the plans, desires, and

values that are the fabric of his or her

life and identity. Roughly speaking, we

believe that it is obligatory to leave

people alone, unless we have powerful

reasons for not doing so.[12]

These two principles, however, lead to different, and often conflicting, conceptions of informed consent. The Principle of Beneficence emphasizes the importance of producing good outcomes. When that principle serves as the moral foundation of informed consent, a patient's consent is obtained to protect his or her interests by helping to ensure that good outcomes are produced for the patient. A good outcome is usually understood by health care providers to be the best possible medical outcome. So long as a medical intervention does not have a significant potential for harmful outcomes, informed consent is not perceived to be necessary (because such an intervention produces only good outcomes or, at least, will not harm the patient). However, when a medical procedure has a significant potential to produce harmful outcomes as well as benefits for the patient (eg, surgery, chemotherapy, transfusions), there is general agreement that it is necessary to obtain the patient's informed consent before administering the treatment. Under such circumstances, it is believed that only the patient can decide how much risk is consistent with his or her interests. Although there is a recognition that patients have a right to make certain decisions, that right is acknowledged only when those decisions involve treatment that includes a potential to harm the patient.

Alternatively, the Principle of Autonomy emphasizes that, other things being equal, competent adult patients always have the right to decide what ought or ought not be done to them (providing that the exercising of that right does not infringe on the comparable rights of others). The patient's right to self-determination is of primary importance. When the Principle of Autonomy serves as the moral foundation of informed consent, consent is required "simply" because it helps protect and enhance a patient's right to self-determination.

These same two principles also serve as guides for a broad range of other professional behaviors, not just in situations that have traditionally involved informed consent. Most health care professionals, including physical therapists, have generally understood the Principle of Beneficence to be their primary duty: It is their duty to bring about the best possible medical outcome for the patient, thereby benefiting the patient. Producing the best possible medical outcome also includes the duty to avoid harming a patient, a duty readily acknowledged by health care professionals. This duty is often referred to as the Principle of Nonmaleficence. (Although some philosophers argue that the duty of nonmaleficence follows from the duty of beneficence, others argue that the duty of nonmaleficence is a distinct, more stringent duty than the duty to produce benefits. The Hippocratic oath is often cited as an example.[13] The formulation of this principle, primum non nocere, however, is not Hippocratic.[14] Although an interesting philosophical issue, whether beneficence includes nonmaleficence or whether they are two separate duties is not crucial in this discussion.) Thus, a physical therapist has a moral obligation to produce benefits for and prevent harm to a patient. Health care professionals, however, also generally acknowledge that they have a duty to respect a patient's right to self-determination, and they often encourage patients to make choices regarding their own health care. A moral dilemma arises when the health care professional confronts a situation in which it is not possible to fulfill both sets of duties. What should the health care provider do when, by complying with a patient's autonomous decision, harm will come to the patient? That is, what should the health care provider do when, by respecting the patient's autonomy, he or she has not fulfilled the duty to produce benefits for and avoid harm to the patient? One alternative many health care providers choose is to override the patient's autonomous decision in order to produce a good medical outcome for the patient. Such an action is an instance of medical paternalism. According to Jane Zembaty, "Paternalism is the interference with a person's autonomy justified by reasons referring exclusively to the welfare, good, happiness, needs, interests, or values of the person being constrained."[15] Thus, physical therapists who believe that it is their primary duty to benefit patients and protect them from harm--including harm from patients' own choices--feel justified in acting paternalistically.

Paternalism presents a number of moral problems, however, and most of the philosophical literature concludes that medical paternalism cannot be morally justified in cases involving competent adults. Even in the area of rehabilitation, where it has been argued that some paternalism may be justified because of the time most patients require to adjust to a new disability,[16] the arguments do not justify all treatment that will medically benefit the patient. Although it is beyond the scope of this article to review all of the "anti-paternalism" arguments, a brief sketch of a few of them will be sufficient to show the extent to which medical paternalism is morally objectionable.

The first argument is based on the fact that although medical practitioners, because of their specialized knowledge, are generally in the best position to know what is the best medical option for a patient, it does not follow that the health care professional knows, or can know, what is in the best interest of the patient, all things considered. (As a separate concern, the issue of "medical uncertainty" is also relevant. Medical practitioners do not always know which medical option is the best, although this uncertainty is rarely acknowledged or communicated to patients. For a more thorough discussion of the issue of uncertainty and its implications for informed consent, see Katz's book entitled The Silent World of Doctor and Patient.[17]) Although most patients consult a health care professional because they are seeking better health, patients have their own individual sets of values, beliefs, goals, and interests. Although a health care professional may be uniquely qualified to render advice concerning what options will optimize a patient's health, optimizing health may or may not be the only goal, or even the primary goal, of any given patient. In today's health care system, where health care providers generally do not have in-depth, long-term professional relationships with their patients, and given today's pluralistic society in which individuals have extremely diverse value systems, it is unlikely that the health care professional has a sufficient understanding of the patient as an individual to know, and appropriately weigh, all the factors involved in making such decisions. Furthermore, even though physical therapists (and other health care professionals) engaged in long-term rehabilitation, chronic care, and home health care frequently come to know their patients extremely well, their training does not and cannot qualify them to fully judge what is or is not in a patient's overall interest.

Second, and more important from the moral point of view, even if a health care professional has the appropriate knowledge to be able to judge what is in a patient's best overall interest, it does not follow that a health care professional ought to make such decisions. Two types of arguments can be made to support this point. Arguments of the first type are based on the long-term consequences that result when health care professionals make such decisions (consequentialist arguments); arguments of the second type are based on the belief that as rational beings, humans have certain moral duties that they are obligated to fulfill (deontological arguments).

Consequentialist arguments against paternalism conclude that, overall, paternalism produces more harm than good. One such argument is that it is only through the use and development of an individual's rational abilities (ie, by making decisions concerning the individual's own life) that the individual fully develops his or her own potential.[18] By making decisions for another person, even when based on a belief that one knows better than the other person, one treats the other as a child and the development of the other person is inhibited. When people are treated like children, there is a greater likelihood that they will become increasingly childlike, taking less and less responsibility for themselves and their decisions. (Indeed, some would argue that this condition currently exists, at least to a limited extent, in our health care system. Many patients expect to have decisions made for them and do not accept responsibility for their own decisions.) Thus, medical paternalism hinders the fuller development of the patient as a rational being, thereby creating more harm than good.

A second consequentialist argument is that by allowing paternalism in some medical situations, patients will come to know that they have little assurance that their autonomous choices and decisions will be respected. Over time patients will become less trusting of health care professionals and the health care system. Consequently, they may avoid seeking treatment, leading to worse medical consequences and again creating more harm than good overall.

Rather than examining the consequences of such actions, the deontologist believes that every individual has specific duties that he or she is morally required to fulfill. Among these duties is the duty to always respect other individuals as beings with dignity.[19] This duty means that a person should respect another person's decisions and not override those decisions, unless such decisions interfere with the rights of others. It means that no person should ever use another person as merely a means to achieve some result, even if that result will benefit the other person. When health care professionals act paternalistically, the patient is used as a means to achieve an end (ie, a good medical outcome) by overriding the patient's decisions, rather than respecting the patient as an individual with dignity.

Finally, those who argue against medical paternalism point out that all adults make decisions--indeed, very important decisions--under stress, even severe stress, throughout their lives.[12] The simple fact that patients are ill does not mean that their right to make decisions is diminished. Illness does not necessarily lessen a person's mental competence. An individual's right to make a medical decision is also not diminished because he or she is not as knowledgeable as the health care provider.[12] Few of us are as knowledgeable about investments as the financial professionals we consult. Yet, few--if any--of us would claim that we ought not be allowed to make such decisions, that the consultant's advice must be followed "for our own good."

Of course, some might object that financial decisions are not comparable to decisions regarding an individual's health, that the risks involved are not equivalent. It should be noted, however, that in our society, individuals are permitted to take substantial risks with their health. They are allowed to participate in dangerous hobbies, life styles, and occupations that pose significant risks to their health (eg, mountain climbing, smoking, fighting oil-well fires).[12] Few would claim that individuals should be prevented from carrying out such choices. In sharp contrast, when a patient chooses a "risky" alternative, health care professionals often conclude that the patient has made the "wrong" choice and that they, the professionals, are justified in overriding that choice[20]; however, it is inconsistent to respect some autonomous choices that pose significant health risks while overriding others (eg, autonomous health care choices). As Gorovitz states, "The right to choose is not limited to the right to choose rightly."[12] Even when a patient's judgment fails to achieve his or her own goals, or a patient later regrets the decision he or she made, it does not follow that the patient should not have been allowed to make such a choice. Furthermore, especially in health care, there is no guarantee as to what is the "right" choice in any given situation. Even if a health care professional's choice were carried out, it does not follow that his or her choice would necessarily lead to "better" outcomes than the patient's choice (ie, that the professional's choice was more correct than the patient's choice). Nor does it follow that the patient would be better off if coerced into compliance with the health care professional's opinion of what is best for the patient. Coerced compliance can lead to worse consequences.[21]

In summary, the philosophical foundation of informed consent is the Principle of Autonomy; the primary goal is the protection and enhancement of autonomy. Because health care professionals have been strongly influeced in their perceptions about informed consent by the Principle of Beneficence, however, many implications of an "autonomy-enhancing" conception of informed consent often have not been fully considered. When the Principle of Autonomy is acknowledged as the moral foundation, a dramatic shift in perceptions is required--a gestalt shift from focusing on preventing harms and producing benefits to focusing on protecting and enhancing patient autonomy.

General Implications of Autonomy-Enhancing Informed Consent

Perhaps the most striking implication of autonomy-enhancing informed consent is the dramatic expansion of the set of situations in which informed consent is morally required. Informed consent is required not only for interventions that have potentially harmful consequences (eg, surgery, chemotherapy, blood transfusions) but also for many other types of procedures or treatments, including physical therapy, that are generally perceived to be "harmless," or low-harm and low-risk procedures. Informed consent is no less important, from the moral point of view, in these types of situations than when there is a significant risk of harm. When informed consent is based on the importance of protecting or enhancing autonomy, it is required because of the potential infringement on autonomy, regardless of whether a potential for harm exists. Failure to obtain informed consent in any situation in which options for the patient are available constitutes a failure to respect the autonomy of the patient. Even when only one type of medical treatment exists for a given problem, at least two options are available to the patient: treatment or nontreatment.

It is of particular interest that treatment refusals most often occur over "routine" tests and care and not over the more risky invasive procedures such as surgery,[11] even though it is the latter that receive the most attention, particularly in the medical and philosophical literature. Yet, informed consent traditionally is not even considered to be appropriate, let alone necessary, for these routine procedures. Whether rehabilitation services are considered to be part of routine care depends on the individual's perspective. I argue, however, that rehabilitation services (eg, physical therapy, occupational therapy, speech therapy, audiology) have traditionally been considered more closely related to "routine care" than to invasive procedures (eg, surgery, blood transfusions) because rehabilitation services are not considered to be invasive or to have much potential for significant harm. A persuasive argument could be constructed that rehabilitation services are extremely invasive, given their "prolonged" nature (usually weeks to months or even years) and the tremendous impact of such services on a patient's daily life, both during and after treatment. But even if one is unpersuaded that services such as physical therapy are invasive and thus do not require informed consent, if autonomy enhancement is acknowledged as the moral foundation of informed consent, the necessity for obtaining consent for such services becomes apparent. From an autonomy perspective, informed consent is perceived to be important not only for invasive, potentially harmful procedures, but for all treatment. Thus, a physical therapist has a moral duty to obtain a patient's informed consent before initiating treatment. This duty does not arise because there may be a risk of harm to patients when receiving physical therapy services[22] nor merely because the therapist is in private practice or works in a state that permits practice independent of physician referral[23]; this duty arises from the therapist's moral obligation to enhance patient autonomy.

Under autonomy enhancement, informed consent includes much more than just the legal duty to warn a patient about potential risks and to obtain a patient's signature. It is more than just a formal procedure for ensuring that the "conditions of the understanding between the clinician and patient [are] placed in writing."[23] Informed consent becomes a process that underlies the patient-health care professional relationship--an ongoing "dialogue"[24] between the patient and the health care provider, not merely a single, dateable event that occurs whenever a decision must be made because of potentially harmful consequences. Autonomy-enhancing informed consent sets a different tone to the interaction between the patient and the health care professional, a tone of respect and equality. As Purtilo states, "The mechanism of informed consent is designed to foster a type of interaction on which trust can be solidly built."[23] Informed consent becomes an ongoing conversation in which the risks and benefits of all treatment alternatives (including the alternative of no treatment) are examined; an ongoing conversation in which informational needs that are idiosyncratic to the individual patient are explored[25]; an ongoing conversation in which the patient's multiple values, interests, and goals are respected.

With patients in the role of active moral agents, as "ultimate directors"[24] of their own care, autonomy-enhancing informed consent also entails important responsibilities, as well as rights, for patients. Above all, autonomy-enhancing informed consent implies that patients must accept responsibility for their own decisions. Provided that a patient was not deceived, manipulated, or coerced (and assuming that there was no negligence on the part of the health care professional), once an autonomous decision is made by the patient, then the responsibility for the consequences lies with the patient. The patient has this responsibility even if his or her decision turns out to be medically "incorrect" or fails to coincide with his or her overall goals and plans. Additionally, when a patient autonomously chooses to have a health care professional make a decision regarding the patient's health care--provided the professional conforms to any limitations placed on the decision (agreed upon by the patient and the professional) and does not act negligently--the patient cannot, from the moral point of view, later blame the health care provider for the decision. Furthermore, the patient also has a moral responsibility to "contribute freely and truthfully to the ongoing medical dialogue"[24] that occurs between the patient and the health care team. Fully embracing autonomy-enhancing informed consent requires attitudinal changes and perceptual shifts, not only among those who provide health care but also among those who receive it.

Specific Implications for the Issue of Noncompliance

Having considered some of the general implications of the Principle of Autonomy as the moral foundation of informed consent, a closer examination of the assumptions that are often made about patient noncompliance is possible. The current tendency among many health care professionals, including physical therapists, is to label a patient "noncompliant" whenever that patient does not follow through with a recommended treatment regimen, regardless of whether the regimen is a special diet, a medication schedule, or an exercise program. In so doing, the health care professional assumes that any instance of noncompliance is a problem and that the problem is the noncompliance. Such assumptions ignore the patient's right to decide not to comply with the advice of a health care professional, whether that professional is a dietician, a physician, or a physical therapist. The health care professional can and should give advice as to which alternative is likely to achieve the best medical outcome--after all, such expertise is the reason health care professionals are consulted in the first place. Simply because a patient decides not to comply with medical advice, however, does not mean that a "problem" exists.

If a patient does not comply with the treatment regimen, the health care professional should attempt to engage the patient in a dialogue to determine the patient's reasons for not complying. Under the Principle of Autonomy, the health care professional has a duty to try to ascertain these reasons, to ensure that the patient is acting autonomously and not, for example, on the basis of delusions or demonstrably false beliefs. (These considerations, of course, raise the issue of competence, but autonomy-enhancing informed consent has important implications for this issue as well. Although a discussion of those implications is beyond the scope of this article, autonomy-enhancing informed consent entails a general presumption of competence. Just as a person accused of a criminal offense is presumed not guilty until proven otherwise, patients are presumed to be competent unless clear evidence exists to question their competency.) Such a discussion might result in the patient being persuaded to comply, or it might result in a mutually agreeable compromise, or it might not. Regardless of the result, engaging the patient in a discussion in which the goal is to understand the patient's reasons for not complying protects and enhances autonomy. Above all, what is not assumed is that noncompliance automatically means there is a problem. Noncompliance is viewed as a possible result of a patient's legitimate autonomous decision.

A second assumption often made about noncompliance is that the solution to the problem is compliance. When the health care professional is focused on compliance as the solution, it becomes quite natural to try to gain compliance at any reasonable price. What the health care professional considers reasonable, however, is very much influenced by his or her perspective. As long as the health care professional is focused on producing benefits for and avoiding harm to patients, rather than on enhancing autonomy, "reasonable" tends to mean virtually anything that will lead to the best medical outcome, so long as it does not physically harm the patient. Given this focus on compliance and on producing benefits and avoiding harm, autonomy infringements are virtually inevitable and inevitably overlooked.

What sorts of autonomy infringements can occur in such situations? There are two primary paths by which one individual can interfere with another individual's autonomy: 1) by "interfering with the individual's freedom to exercise choices"[15] (eg, by using force, threats, or coercion to constrain the individual from making and carrying out certain decisions) or 2) by "interfering with the choice-making process"[15] (eg, withholding or distorting information that is relevant to making a particular decision). The first path renders a patient's decision nonvoluntary, and the second path renders it uninformed. Because the goal of informed consent is to protect patient autonomy (ie, to ensure that patients make voluntary decisions regarding their care, based on full and appropriate information), it is clear that neither type of interference is morally permissible under autonomy-enhancing informed consent. The following cases illustrate how these different types of interference can occur in physical therapy.

Case 1. Mrs "S" is a 54-year-old

woman who suffered a right

cerebrovascular accident three weeks

ago. She has been receiving physical

therapy for two and a half weeks. High

muscle tone is beginning to develop in

her left upper extremity and

passive-range-of-motion exercises are

becoming painful. She is getting excellent

neurological return in her lower trunk

and left lower extremity, however, and

she is already able to ambulate 100 ft(*)

with only contact guarding. One day

when she comes to therapy, she

refuses all treatment to her left upper

extremity "because it hurts too much

and it isn't worth it." She states, "At

least I can walk. Besides, it's only my

left arm. I'm probably not going to get

much use out of it anyway. I know. My

mother had a stroke, and her arm

never got better. I can get by without

being able to use it. Let's just

concentrate on improving my balance so I can

go home." The therapist explains the

importance of treatment, not only for

facilitating improved function of the

patient's arm but also for maintaining

her ROM to prevent severe

contractures. The therapist even points out

other patients with such deformities.

Mrs S continues to refuse. The

therapist believes that Mrs S cannot really

appreciate the long-term implications

of her refusal. Thus, telling Mrs S, "It's

for your own good," and "In the long

run, you'll understand why I have to

do this," the therapist performs the

ROM exercises against Mrs S's wishes.

Meanwhile, Mrs S cries throughout the

treatment session and at one point

tries to gently push the therapist's hand

away.

Case 2. Mr "J" is a 38-year-old man

who suffered third-degree burns over

his face, upper extremities, and

anterior trunk when his car engine

exploded while he was repairing it. He

has been receiving physical therapy for

three months, and his skin grafts are

healing well. He is very cooperative

with his exercise and stretching

program, but is becoming increasingly

unwilling to wear his counterpressure

garments, complaining that they are

"hot, uncomfortable, and a nuisance."

The therapist explains the importance

of the garments for his long-term

appearance. Mr J replies that he really

does not care that much about his

appearance because "it's what's on the

inside that counts." The therapist is

convinced that eventually Mr J will

regret his decision, but that by the

time he does, it will be too late to

reverse the damage to his appearance.

She decides to distort and exaggerate

"the facts" and tells Mr J that if he does

not wear the garments, he will not

regain adequate function in his arms to

be able to return to his work as a

mechanic and that he will eventually

be unable to open and close his

mouth and eyes adequately.

Furthermore, by not cooperating fully with the

rehabilitation process, he is

jeopardizing his insurance coverage. (The

therapist knows these statements are not

true because Mr J is cooperative with

all other aspects of his rehabilitation

program.) Because Mr J is highly

motivated to return to his former

occupation and is unable to afford

rehabilitation services without his insurance, he

complies and allows the therapist to

put the counterpressure garments on

him.

Case 3. Mr "B" is a 68-year-old

widower with mid- to end-stage chronic

obstructive pulmonary disease (COPD).

He has been admitted to a skilled

nursing facility for long-term placement

because he is no longer able to care

for himself in his own home. His

COPD was diagnosed 10 years ago, and

he now requires oxygen 24 hours a

day. His physician has referred him to

physical therapy for an evaluation,

which the therapist scheduled for 11

AM the day after his admission to the

facility. A nurse's aide brings Mr B to

the physical therapy department, via

wheelchair, with portable oxygen. Mr B

appears agitated, and as the nurse's

aide leaves, she tells the therapist, "Mr

B didn't want to come, but I brought

him anyway." After introducing herself

to Mr B, the therapist explains that his

physician has asked her to evaluate him

to determine whether physical therapy

would be beneficial to him. Mr B

replies, "I've been through physical

therapy many times before, and I don't

want any more. I know there is

nothing that can cure my disease. I've lived

with it for 10 years, and I don't care 

what the doctor ordered." Because the

therapist believes she can help Mr B

function more comfortably, she tries to

convince him to at least participate in

an evaluation. She offers explanations

about physical therapy such as the

importance of obtaining baseline

information regarding his current status to

better meet his future needs and the

importance of preventing or retarding

secondary complications. When Mr B

continues to refuse, the therapist

begins to discuss her "genuine desire"

to help him be more comfortable, the

importance of following a physician's

order, and the "terrible" consequences

of not participating in physical therapy

and of not being as active as possible.

After 20 minutes of "discussion,"

during which both Mr B and the therapist

become increasingly agitated, Mr B

finally says, "OK, I give up. If I let you

do the evaluation, will you leave me

alone?" The therapist agrees and

performs the evaluation. In the first case, treatment is actually forced on the patient; in the second case, information is manipulated to bring about a specific decision by the patient; in the third case, elements of information manipulation and coercion (in the form of badgering) are involved. In all of the cases, the physical therapists act paternalistically, hoping to prevent harm to the patients and genuinely believing that they are doing the right thing by protecting the patients from the consequences of their choices.

The last two cases bring to light the subtle but powerful means that health care professionals have at their disposal for manipulating and coercing patients. Precisely how the health care professional communicates information to a patient can have a significant impact on a patient's decisions.

According to the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research,

It is well known that the way

information is presented can powerfully affect

the recipient's response to it. The tone

of voice and other aspects of the

practitioner's manner of presentation can

indicate whether a risk of a particular

kind with a particular incidence should

be considered serious. Information can

be emphasized or played down

without altering its content. And it can be

framed in a way that affects the

listener--for example, "this procedure

succeeds most of the time" versus "this

procedure has a 40 percent failure

rate.").[11(p67)] Under autonomy-enhancing informed consent, health care professionals have a duty to become aware of, and sensitive to, the many ways in which their behavior and communication can have an impact on a patient. They have a duty to respect patients as autonomous agents, acting so as to protect, and even enhance, the autonomy of patients. Persuasion through rational discourse is not only allowed, but encouraged. Communication that is even mildly or vaguely threatening, that contains exaggerations of deleterious consequences, or that is aimed at "wearing down" the patient, however, is impermissible. Furthermore, in long-term care facilities extra caution must be exercised to protect and enhance patient autonomy. Because opportunities for control over and manipulation of patients abound in rehabilitation and chronic-care institutions where residents are often extremely dependent on health care providers for numerous aspects of their care, even greater sensitivity is required to avoid autonomy infringements.

A third assumption often made about noncompliance is that all cases of compliance are morally nonproblematical. Thus, the ethical aspects of unquestioned compliance are overlooked. Consider the classic "good patient," that is, the patient who complies with every request of the health care professional, asks for very little, never complains, and is thankful for all that is done to him or her. Such patients do whatever the practitioner wants them to do. Unfortunately, fear is often the motivation for such behavior, whether it is "fear of a bad medical outcome...[or] fear of the consequences of defying the wishes [of the health care provider], however subtly they are expressed."[12(p53)] It is unlikely that such compliance arises from autonomous decision making, but such behavior will usually go unnoticed, even by therapists and other health care professionals who are sensitive to not contravening a patient's expressed choices. Guccione has also pointed out that patients "who refuse to accept professional recommendations will often have their mental competency challenged,"[10(p72)] whereas those who comply will not, even though the rational capabilities of compliant patients are often greatly diminished. Unquestioned compliance goes unnoticed or unchallenged because focusing on producing good medical outcomes is pervasive in the health care system and compliance facilitates the achievement of those outcomes. Under an autonomy-enhancing model of informed consent, however, instances of unquestioned compliance are just as troublesome, from the moral point of view, as instances of noncompliance. Special attention and further dialogue should be encouraged to ensure that such patients are acting on the basis of autonomous decisions and not, for example, out of fear of upsetting the nurses or the therapist.

Finally, by labeling the problem as "noncompliance," an assumption is made that the locus of the problem of noncompliance is the patient. Health care professionals thus frequently avoid examining the role their own behavior, or the health care setting itself may influence a patient's decision not to comply. Health care professionals often unthinkingly ignore the many varied factors that may have led to a patient's noncompliance in the first place, factors such as not fully explaining the "routine care" that practitioners tend to take for granted, not heeding the patient's fears, or setting goals that are not shared by the patient. Often, noncompliance is the only method left to patients for asserting any control over their own lives, especially in rehabilitation and long-term care facilities. So long as a health care professional believes that the locus of the problem is the patient, what is or is not done to enhance the autonomy of the patient is frequently overlooked. Often, health care professionals can enhance patient compliance simply by taking time to explain procedures and routine care, to encourage patients to express their feelings, and to involve them in the goal-setting process.[9,26] By focusing on the health care professional (ie, switching the focus from the patient's behavior to the professional's behavior), compliance is increased. From the autonomy-enhancing perspective, however, the reason for changing professional behavior is not that it leads to increased patient compliance, but that such changes enhance patient autonomy.

Conclusion

By fully acknowledging the Principle of Autonomy as the moral foundation of informed consent, many ethical aspects of the therapist-patient relationship are brought to light. In particular, the issue of patient noncompliance is recast to incorporate an array of ethical concerns, based on the importance of protecting and enhancing autonomy. The role of a health care professional's behavior in both patient noncompliance and unquestioning compliance is acknowledged. Full recognition and respect is given to a patient's right to decide not to comply with the advice of health care practitioners, regardless of whether they are physicians, physical therapists, or other health care professionals. Functioning from an autonomy-enhancing perspective does not necessarily mean changing all of one's professional behavior with patients. For many health care professionals, including physical therapists, however, it may require a significant shift in their basic approach to patients, particularly patients who choose not to comply with the advice of the health care professional.

(*)1 ft = 0.3048 m.

References

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J Coy, MA, PT, is Assistant Professor, Program in Physical Therapy, State University of New York Health Science Center at Syracuse, 750 E Adams St, Syracuse, NY 13210 (USA). She was Assistant Professor, Department of Physical Therapy, Ithaca College, Ithaca, NY 14850, when this article was written.