Chapter 2. Patient Preferences

This chapter discusses the second topic that is essential to the analysis of an ethical problem in clinical medicine, namely, the preferences of patients. By preferences of patients we mean the choices that persons make when they are faced with decisions about health and medical treatment. These choices reflect the patient's own experience, beliefs, and values as informed by the physician's recommendations. The previous chapter, “Medical Indications,” concerns the physician's clinical judgment about a patient's medical condition and about interventions that might objectively improve deficits in that condition. When there are medical indications for treatment, a physician should propose a treatment plan that a patient may accept or refuse. We will discuss the following in this chapter: (1) The ethical principle of respect for the autonomy of the patient; (2) the legal, clinical, and psychological significance of patient preferences; (3) informed consent; (4) decisional capacity; (5) truth in medical communication; (6) cultural and religious beliefs; (7) refusal of treatment; (8) advance directives; (9) surrogate decisions; (10) the challenging patient; and (11) alternative medicine.

The Principle of Respect for Autonomy

Respect for autonomy is the guiding ethical principle of the Topic of Patient Preferences. Respect for autonomy is one aspect of a larger principle, namely, respect for persons, which is a fundamental principle of all morality. Respect for persons affirms that each and every person has moral value and dignity in his or her own right. In this sense, the principle of respect applies to every encounter between persons, including those between a physician and a patient. One implication of respect for persons is a respect for personal autonomy, that is, acknowledging the moral right of every individual to choose and follow his or her own plan of life and actions.

In clinical ethics, respect for the autonomy of the patient signifies that physicians' judgments about how to benefit their patients should never ignore or override the preferences of those patients. Patients have the right to freely accept or reject physician's recommendations. Their response to the physician's recommendations should reflect their own values for their own lives. The physician must be confident that medical interventions are acceptable to the patient. As a moral principle, respect for autonomy is a “two-way street”: the autonomy of physicians to act only on their best judgment about how best to benefit a patient medically, must also be respected. Therefore, respect for patient autonomy does not imply that patients have the right to demand inappropriate treatment, or that a physician must accede to any and every request of a patient if it conflicts with the physician's best judgment.

While physicians must always respect the autonomy of their patients, in practice, many forces may obstruct and limit the ability of patients to express their preferences. In clincal ethics, respect for patient preferences takes place within a therapeutic relationship, that is, when some health problem prompts a patient to seek help from a physician and a physician responds with diagnosis, advice, and a proposed treatment. In this relationship, physicians possess a de facto power: they have knowledge and skills that the patient needs. Also, patients are often so ill that they cannot clearly formulate or express preferences: they simply want and need help. Therefore, the therapeutic relationship can be distorted by what has been called “physician paternalism”: a physician assumes that his or her medical judgment alone should determine the course of care. Modern medical ethics repudiates this sort of paternalism. Instead, both the physician and the patient must form an alliance in which medical recommendations and patient preferences together guide the course of care. This chapter discusses how the ethical principle of respect for autonomy should sustain the therapeutic relationship in general, as well as in those circumstances when preferences are compromised or confused. This chapter examines the conditions for free, informed choice by patients, the strategies that should be employed when the patient is unable to make such a choice, and situations in which a refusal of a physician's recommendation appears to be contrary to the best interests of the patient or causes harm to others. Patient preferences have clinical, legal, and psychological significance.

Clinical Significance of Patient Preferences

Attending to patient preferences is essential to good clinical care. Patients who collaborate with their physicians to reach a shared health care decision have greater trust in the doctor-patient relationship, cooperate more fully to implement the shared decision, and express greater satisfaction with their health care. Research has shown that patients with chronic diseases, such as hypertension, non-insulin-dependent diabetes mellitus, peptic ulcer disease, and rheumatoid arthritis, enjoy better health outcomes when they ask questions, express opinions, and make their preferences known.

Similarly, studies show that some physicians are more likely than others to invite the expression of patient preferences and to encourage a participatory decision-making style rather than a controlling style in the therapeutic relationship. A participatory style is associated with primary care training, skill in interviewing that facilitates empathic listening and communication, and the opportunity to spend time with patients. This approach, in which physicians and patients share authority and responsibility in order to build therapeutic alliances, is sometimes referred to as “patient-centered medicine.”

Different patients may express different but entirely reasonable preferences when faced with the same medical indications. As medicine has become more effective, a particular problem can often be treated by several medically reasonable options, and each option is associated with different risks and benefits for the patient. For example, to avoid the risk of perioperative death, some patients with lung cancer may choose radiation therapy over surgery despite there being a lower 5-year survival rate with radiation. Similarly, some women may choose prophylactic mastectomy over watchful waiting when told they have a strong genetic propensity to breast cancer; some men may choose watchful waiting over surgery for early cancer of the prostate. Respect for the autonomy of the patient implies that a physician should, after explaining his or her own preferences, honor the patient's preference among medically reasonable options.

It is increasingly common for patients to research their condition on Web sites or to learn about treatment options from the media. This information may enhance understanding and cooperation, but it can also be erroneous or inappropriate for the patient's actual condition. The physician should, to the extent possible, explain this difference to patients. Respect for the patient's autonomy does not require the physician to accede to such preferences if they are medically inappropriate.

Legal Significance of Patient Preferences: Self-Determination

American law recognizes that all persons have a fundamental right to control their own body and the right to be protected from unwanted intrusions. Two classic judicial opinions state this principle succinctly:

Every human being of adult years and of sound mind has a right to determine what shall be done with his body.

Schloendorff v Society of New York Hospital (NY 1914).

Anglo-American law starts with the premise of thoroughgoing self-determination. It follows that each man is considered to be master of his own body, and he may, if he be of sound mind, prohibit the performance of life-saving surgery or other medical treatment.

Natanson v Kline (KS 1960).

All states now have laws requiring informed consent for medical treatment, except in certain emergency situations. The legal requirement of explicit consent for specific treatment protects the legal rights of patients to control what is done to their own bodies. Bodily intrusions without consent constitute an illegal battery. Also, failure to obtain adequate informed consent may also open a physician to a charge of negligence. Finally, apart from clinical skill and carefulness, a respect for patient preferences, good communication, and a participatory style of dealing with patients are known to be the most effective protection that physicians have against malpractice lawsuits. Studies show that patients are much less inclined to bring legal action against physicians who exhibit these behaviors.

Psychological Significance of Patient Preferences: Control

Respect for patient preferences is psychologically significant because the ability to express preferences and have others respect them is crucial to a sense of personal worth. The patient, already threatened by disease, may have a vital need for some sense of control. Indeed, patients and families often struggle to control situations that are beyond human control (see Medical Futility). When patient preferences are ignored or devalued, patients are likely to distrust and perhaps disregard physicians' recommendations. When patients are overtly or covertly uncooperative, the effectiveness of therapy is threatened. Furthermore, patient preferences are important, because their expression may lead to the discovery of other factors, such as fears, fantasies, or unusual beliefs, that the physician should consider in dealing with the patient.

We ask six questions that comprise the issues that must be raised in identifying and assessing an ethical problem regarding patient preferences.

1. Has the patient been informed of benefits and risks, understood this information, and given consent?

2. Is the patient mentally capable and legally competent, and is there evidence of incapacity?

3. If mentally capable, what preferences about treatment is the patient stating?

4. If incapacitated, has the patient expressed prior preferences?

5. Who is the appropriate surrogate to make decisions for the incapacitated patient?

6. Is the patient unwilling or unable to cooperate with medical treatment? If so, why?

Informed consent is the practical application of respect for the patient's autonomy. When patients consult a physician for a suspected medical problem, they usually state the problem as they see it. They then request help, either explicitly or implicitly. Physicians make a diagnosis and recommend treatment.

Question One—Has the Patient Been Informed of Benefits and Risks, Understood This Information, and Given Consent?

In the process called “Informed Consent,” physicians explain their opinion about the nature of the patient's problem, recommend a course of treatment, give the reasons for the recommendation, propose options for alternative treatments, and explain the benefits and risks of all options. The patient, ideally, understands the information, assesses the treatment choices, and agrees (or disagrees) to accept the physician's recommendation.

Informed consent constitutes a central feature of an encounter between physicians and patients, characterized by mutual participation, good communication, mutual respect, and shared decision making. Informed consent requires a dialogue between physician and patient leading to agreement about the course of medical care. Informed consent establishes a reciprocal relationship between physician and patient. After initial consent to treatment has occurred, an ongoing dialogue between patient and physician, concerning the patient's continuing medical needs, reinforces the original consent. A properly negotiated informed consent benefits both the physician and the patient—a therapeutic alliance is forged in which the physician's work is facilitated because the patient has realistic expectations about results of the treatment, is prepared for possible complications, and is more likely to be a willing collaborator in the treatment. Despite a vast literature in law and ethics about the importance of informed consent, many studies reveal that physicians are often deficient in observing the practice and the spirit of informed consent.

Law has long required explicit consent to surgery, a serious and possible lethal invasion of the human body. However, consent for medical treatment was usually considered presumed by the very presence of the patient in need. However, the more elaborate practice of informed consent, described earlier, has become ethically and legally vital, as more of medical and surgical care involves lengthy, perhaps lifelong, modifications of personal life. Chemotherapy for many disease conditions lasts for life; organ and tissue transplantation requires continual immunosuppression and surveillance. The care of all chronic diseases necessarily requires the understanding, acceptance, and cooperation of patients. These features of modern medicine may make informed consent as much a personal acceptance of changes in one's quality of life as it is permission for a procedure.

Case I

Mr. Cure, the patient with pneumococcal meningitis, is told that he needs immediate antibiotic therapy. After he is informed of the nature of his disease, the benefits and burdens of treatment, and the possible consequences of nontreatment, he expresses his preference by consenting to the antibiotic therapy. A therapeutic alliance that is clinically, ethically, and emotionally satisfactory is formed and reinforced when the patient recovers.

Case II

Ms. Cope is a 42-year-old woman who was diagnosed as having insulin-dependent diabetes at the age of 18. Insulin was prescribed and a dietary regimen recommended. In the intervening years, she has complied with her dietary and medical regimen but has experienced repeated episodes of ketoacidosis and hypoglycemia. Her physician has regularly discussed with Ms. Cope the course of her disease and the treatment plan and has inquired about her difficulties in managing her condition. The physician proposes that Ms. Cope consider an implantable insulin pump that could improve glycemic control.

Comment

Case I exemplifies what might be called routine consent. The physician expresses clinical judgment by making recommendations to the patient regarding an appropriate course of care. The patient makes known his preference by consulting the physician for diagnosis and treatment and by accepting the physician's recommendations. Case II is also an example of routine consent, but it occurs in a chronic disease setting. Ms. Cope's doctor was assiduous in informing and educating her patient. Ms. Cope accepted the treatment regimen, and her compliance with it shows her preferences. She is now considering whether she will accept the benefits and risk of the insulin pump. Patients with chronic diseases, which often have variable courses far into the future, must consider a wider range of consequences. We shall see problems develop in both these cases in the following pages.

Definition and Standards of Disclosure

Informed consent is defined as the willing acceptance of a medical intervention by a patient after adequate disclosure by the physician of the nature of the intervention, its risks and benefits, and also its alternatives with their risks and benefits. How should the adequacy of disclosure of information by a physician be determined? One approach is to ask what a reasonable and prudent physician would tell a patient. This approach, which was the legal standard in some of the early informed consent cases, is increasingly being replaced by a new standard, namely, what information do reasonable patients need to know to make reasonable decisions. The former standard affords greater discretion to the physician; the latter “reasonable patient” is more patient centered. A third standard, sometimes called a “subjective” standard, is patient specific. Under this standard, the information provided is specifically tailored to a particular patient's need for information and understanding. Although the law usually requires that the physician meet only the reasonable-patient standard, a physician who engages in a participatory style of shared decision-making should aspire to the requirements of a subjective standard.

Scope of Disclosure

Many studies show that patients desire more information from their physicians; many practitioners are aware that their patients appreciate information. In recent years, candid disclosure has become the norm. It is widely agreed that disclosure should include (1) the patient's current medical status, including the likely course if no treatment is provided; (2) the interventions that might improve prognosis, including a description and the risks and benefits of those procedures and some estimation of probabilities and uncertainties associated with the interventions; (3) a professional opinion about alternatives open to the patient; and (4) a recommendation that is made on the basis of the physician's best clinical judgment.

In conveying this information, physicians should avoid technical terms, attempt to translate statistical data into everyday probabilities, ask whether the patient understands the information, and invite questions. Physicians are not obliged, as one court said, to give each patient “a mini-medical education.” Still, physicians should strive to educate their patients about their specific medical needs and options.

As we mentioned in Clinical Significance of Patient Preferences, physicians are not the only sources of medical information: media, Web sites, advocacy organizations, and many other sources provide information of various quality. Persons often come to the physician with files full of articles. It falls to the physician to interpret this information and, above all, to evaluate its relevance to this particular patient.

There is ethical debate about whether the scope of disclosure should include information about the experience of the physician, for example, disclosing the number of previous procedures performed with the data being physician specific rather than national, outcome data. While physicians routinely refer patients to specialists for problems and procedures in which they are not expert, they may not be comfortable telling a patient about the extent of their experience with a procedure they are about to perform. Some physicians learn a technique in a weekend course and perform it in their offices on Monday. It is our opinion that it is ethically appropriate to disclose levels of experience, and it is obligatory to do so in situations where the procedure is necessary but has significant risks or is elective. The patient is then able to make an informed choice about how to proceed.

The moral and legal obligations of disclosure vary with the situation; they become more stringent as the treatment situation moves from emergency through elective to experimental. In some emergency situations, very little information need be provided. Any attempt to inform may cost precious time. Ethically and legally, information can be curtailed in emergencies (see Implied Consent). For nonemergency or elective treatments, much more information should be provided. Finally, fully detailed and thorough information should accompany any experimental or innovative treatment.

Comprehension

Discussions of informed consent usually emphasize the amount and kind of information the doctor should provide. The patient's comprehension is equally as important as the adequacy of the information. Many studies suggest that comprehension by patients of medical information is limited and inadequate. Information is often provided in settings and at times when the patient is distressed or distracted. At the same time, studies suggest that communication is often poorly accomplished and that little effort is made to overcome barriers to comprehension. The physician has an ethical obligation to make reasonable efforts to ensure comprehension. Explanations should be given clearly and simply; questions should be asked to assess understanding. Written instructions or printed materials should be provided. Video or computer programs should be provided to guide patients who face complicated decisions, such as choosing between options for treatment of breast cancer or prostate cancer. Educational programs for patients with chronic disease should be arranged. While physicians have the primary responsibility to inform their patients, other clinicians, particularly nurses, may supplement and enhance the information provided by the physician.

Documentation of Consent

The process of informed consent is documented in a signed consent form that is entered in the patient's record. Health care institutions require signed documentation before certain medical and most surgical or invasive diagnostic procedures are initiated. The document typically names the procedure and states that the risks and benefits have been explained to the patient. It is sometimes believed—wrongly—that a signed consent form is legal proof that a patient has given consent. In fact, the signed consent form in the absence of a consent discussion does not prove that the necessary discussion leading to an informed consent has taken place. The actual process and details of the consent interview should be documented by the physician in the medical record. The signed consent form is not a substitute for this more complete documentation.

Difficulties with Informed Consent

Many studies reveal that physicians often fail to conduct ethically and legally satisfactory consent negotiations. Physicians may be trapped in technical language, troubled by the uncertainty intrinsic to all medical information, worried about alarming the patient, or hurried and pressed by multiple duties. In addition, patients may have limited understanding, may be inattentive and distracted, or overcome by fear and anxiety. Selective hearing because of denial, fear, or preoccupation with illness may account for failure to comprehend what one might otherwise understand. Patients may believe that decisions are the physician's prerogative; physicians may not appreciate the rationale for the patient's participation.

These inadequacies in the informed consent process may be due to a belief by some physicians that the informed consent requirement imposes an undesirable and perhaps impossible task: undesirable because adequately informing a patient takes too much time and might create unnecessary anxiety, and impossible because no medically uneducated and clinically inexperienced patient can truly grasp the significance of the information the physician must disclose. For these reasons, physicians sometimes dismiss the informed consent requirement as a bureaucratically necessary ritual. This is a sadly limited view of the ethical purpose of informed consent. Informed consent is not merely pushing information at a patient. It is an opportunity to initiate a dialogue between physicians and their patients in which both attempt to arrive at a mutually satisfactory course of action. Informed consent should result in shared decision making. The process, while difficult, is not impossible and is always open to improvement.

Truthful Communication

Communications between physicians and patients should be truthful; that is, statements should be in accord with facts. If the facts are uncertain, that uncertainty should be acknowledged. Deception, by stating what is untrue or by omitting what is true, should be avoided. These ethical principles should govern all human communication. However, in the communication between patients and physicians, certain ethical problems about truthfulness may emerge. Does the patient really want to know the truth? What if the truth, once known, causes harm? Might not deception help by supporting hope? Traditionally, medical ethics has given ambiguous answers to these questions: while some past authors favored truthfulness, others recommended beneficent deception. More recently, with the prominence of the doctrine of informed consent, truthfulness has been commended as the ethical course of action.

Case I

Mr. R.S., a 65-year-old man, comes to his physician with complaints of weight loss and mild abdominal discomfort. The patient, whom the physician knows well, has just retired from a busy career and has made plans for a round-the-world tour with his wife. Studies reveal mild elevation in liver function tests and a questionable mass in the tail of the pancreas. At the beginning of his interview with his physician to discuss the test results, Mr. R.S. remarks, “Doc, I hope you don't have any bad news for me. We've got big plans.” Ordinarily, a procedure to obtain tissue to confirm pancreatic cancer would be the next step. The physician wonders whether he should put this off until Mr. R.S. returns from his trip. Should the physician's opinion that Mr. R.S. may have pancreatic cancer be revealed to him at this time?

Comment

Contemporary bioethics strongly affirms the patient's right to the truth. The arguments in support of this position are:

1. General ethical arguments favor a strong moral duty to tell the truth as contributory to personal relationships and social cohesion. This general obligation is not easily overridden by speculative possible harms that might come from knowing the truth.

2. Suspicion on the part of the physician that truthful disclosure would be harmful to the patient may be founded on little or no evidence. It may arise more from the physician's own uneasiness at being a “bearer of bad news” than from the patient's inability to accept the information.

3. Patients have a need for the truth if they are to make rational decisions about actions and plans for life.

4. Concealment of the truth is likely to undermine the patient–physician relationship. In case of serious illness, it is particularly important that this relationship be strong.

5. Toleration of concealment by the physician may undermine the trust that the public should have in the profession. Widespread belief that physicians are not truthful would create an atmosphere in which persons who fear being deceived would not seek needed care.

6. Recent studies have shown that most patients with diagnoses of serious illness wish to know their diagnosis. Similarly, recent studies are unable to document harmful effects of full disclosure.

Recommendation

Mr. R.S. should be told the truth. He probably has cancer of the pancreas and should have a procedure to obtain tissue for pathological analysis. The considerations in favor of truthful disclosure, in our opinion, establish a strong ethical obligation on the physician to tell the truth to patients about their diagnosis and its treatment. The following considerations are relevant:

1. Speaking truthfully means relating the facts of the situation. This should be done in a manner measured to perceptions of the hearer's emotional resilience and intellectual comprehension. The truth may be brutal, but the telling of it should not be. A measured and sensitive disclosure is demanded by respect for the patient's autonomy. It reinforces the patient's ability to deliberate and choose; it does not overwhelm this ability. It is advisable to open such a conversation with a question about how much detail the patient wishes to know and whether the patient may wish some other person to be informed.

2. Truthful disclosure has implications for Mr. R.S.'s plans. Further diagnostic studies might be done and appropriate treatments chosen. The trip might be delayed or canceled. Estate and advance care planning might be considered. Mr. R.S. should have the opportunity to reflect on these matters and to take control of his future.

Case II

Mr. S.P., a 55-year-old teacher, has had chest pains and several fainting spells during the past 3 months. He reluctantly visits a physician at his wife's urging. He is very nervous and anxious and says to the physician at the beginning of the interview that he abhors doctors and hospitals. On physical examination, he has classic signs of tight aortic stenosis, confirmed by echocardiogram. The physician wants to recommend cardiac catheterization and probably cardiac surgery. However, given his impression of this patient, he is worried that full disclosure of the risks of catheterization would lead the patient to refuse the procedure.

Comment

In this case, the anticipated harm is much more specific and dangerous than the harm contemplated in Case I. Hesitation about revealing the risks of a diagnostic or therapeutic procedure is based on the fear the patient will make a judgment detrimental to health and life. Also, in this case there is better reason to suspect this patient will react badly to the information than will the patient in Case I.

Recommendation

The arguments in favor of truthful disclosure apply equally to this case and to Case I. Whether or not catheterization is accepted, the patient will need further medical care. In fact, the situation is urgent. This patient needs, above all, the benefits of a good and trusting relationship with a competent physician. Honesty is more likely to create that relationship than deception. Also, the physician's fears about the patient's refusal may be exaggerated. The physician might also be concerned about the family's reaction if Mr. S.P. died unexpectedly during catheterization. Although Mr. S.P. has avoided physicians in the past, now that he is seriously ill, he may become more accepting of the help that medicine can offer. The physician would be at serious fault if the patient died without having had the opportunity to consider the options for care.

Placebo Treatment

Placebo treatment is a clinical intervention intended by the physician to benefit the patient, not by any known physiological mechanism of the intervention, but because of certain psychological or psychophysical effects due to the positive expectations, beliefs, and hopes of the patient. The intervention might be, as it was often in the past, an inert substance, a sugar pill, or, as it is frequently practiced today, vitamin pills, over-the-counter analgesics, or saline injections. That such interventions do result in a placebo effect, such as relief of pain, has long been demonstrated. Recent studies reveal that almost half of American physicians utilize placebo treatments on a regular basis.

Placebo treatment raises a problem of truth telling, because it seems inevitably to involve deception. The physician knows that the intervention does not have the objective properties necessary for efficacy and the patient is kept ignorant of this fact. In some cases, the deception is an outright moral offense, motivated solely by the desire to charge the patient for a procedure or to “get the patient off my back”; in other cases, placebo deception may be motivated by the judgment that a harmless intervention may achieve a positive result. This raises a genuine ethical question: the duty not to deceive seems to conflict with the duty to benefit without doing harm.

Placebo agents are now commonly used in controlled clinical trials of therapy for non–life-threatening conditions. However, no deception is involved, because research subjects must be informed that they will be randomized and may receive either an active drug or an inert substance. This practice is certainly ethical. At present, there is a broad consensus among ethicists that clinical use of placebos is unethical.

Case I

A 73-year-old widow lives with her son. He brings her to a physician because she has become extremely lethargic and often confused. The physician determines that, after being widowed 2 years earlier, she had difficulty sleeping, had been prescribed hypnotics, and is now physically dependent on them. The physician determines the best course would be to withdraw her from her present medication by a trial on placebos.

Case II

A 62-year-old man has had a total proctocolectomy and ileostomy for colon cancer. Evidence of any remaining tumor is absent, the wound is healing well, and the ileostomy is functioning. On the eighth day after surgery, he complains of crampy abdominal pain and requests medication. The physician first prescribes antispasmodic drugs, but the patient's complaints persist. The patient requests morphine, which had relieved his postoperative pain. The physician is reluctant to prescribe opiates because repeated studies suggest that the pain is psychological, and the physician knows that opiates will cause constipation. She contemplates a trial of placebo.

Comment

Any situation in which placebo use involves deliberate deception should be viewed as ethically suspect. The strong moral obligations of truthfulness and honesty prohibit deception; the danger to the patient–physician relationship advises against it. Any exception to this strict obligation would have to fulfill the following conditions: (1) The condition to be treated should be known as one that has high response rates to placebo, for example, mild mental depression or postoperative pain; (2) the alternative to placebo is either continued illness or the use of a drug with known toxicity and addictability, for example, hypnotics as in Case I or opioids in Case II; (3) the patient wishes to be treated and cured, if possible; and (4) the patient insists on a prescription.

Recommendation

The use of a placebo in Case I is not justified. The patient is not demanding medication. The problem of addiction should be confronted directly. There will be ample opportunity to develop a good relationship with this patient. Subsequent discovery of deception might undermine this relationship. Use of placebo in Case II is tempting but not ethically justifiable. In favor of placebo use, the patient is demanding relief. Morphine has adverse side effects. A short trial of placebo may be effective in relieving pain and avoiding the harm associated with opioids. However, explanation may be as effective as placebo use. The deceptive placebo can destroy the trust that creates the important and therapeutic placebo effect and can undermine the patient's confidence in the physician. A participatory style of decision-making is based on honest communication. It may be possible, for example, to perform a “mini-experiment” with the patient's consent: explain that two forms of pills will be offered, one active, the other inert, and the patient will blindly choose which one to take. Consultation with the hospital Pain Service is recommended.

Completeness of Disclosure

Disclosure of options for treatment of a patient's condition should be complete, that is, containing all information that a thoughtful person would need to make a good decision in their own behalf. It should include the options that the physician recommends. It should also include other options that the physician may believe are less desirable but which are still medically reasonable. In so doing, physicians may make it clear why they consider these other options less desirable.

Case I

A 41-year-old woman has a breast biopsy that reveals cancer. The physician knows that this patient has a history of noncompliance and cancellation of medical appointments. In light of this, the physician believes that the best treatment approach would be a modified radical mastectomy; this treatment would require less continued care than a lumpectomy and 5 weeks of outpatient radiotherapy. Should the physician omit mention of this second option because she is concerned that after a lumpectomy, the patient may not keep her radiotherapy appointments?

Recommendation

The entire range of options should be explained with a careful delineation of the risks and benefits of each. Making a strong argument in favor of the option the physician considers best is ethically appropriate. However, the patient should be left free to choose, even if the physician believes she may choose the less effective option. Coercion and manipulation of the patient should be carefully avoided. Ultimately, the patient must make decisions about breast surgery and keeping appointments. The physician must provide the patient with information and encourage her to complete whatever form of treatment she elects to receive.

Comment

The dialogue between physicians and patients is not only inhibited by limitations of physician communication and patient comprehension, it is also limited by the failure of many physicians to listen carefully to their patients' words and the emotions underlying them. Finally, the time limits for patient visits imposed by some managed care plans and clinics, and reimbursement policies that compensate for procedures but not for education, discourage good communication. The importance of improved communication between doctors and patients should be obvious in this age of information.

Refusal of Information

Persons have a right to information about themselves. Similarly, they have the right to refuse information or to ask the physician not to inform them.

Case I

Mr. A.J. is scheduled for surgery for spinal stenosis. The neurosurgeon begins to discuss the risks and benefits of this surgery. The patient responds, “Doctor I don't want to hear anything more. I want the surgery. I realize there are risks, and I have confidence in you.” The surgeon is concerned that he has not completed an adequate disclosure.

Case II

Mrs. Care, with MS, had shown little interest during the early years of her illness in learning about the possible course of her disease. She refused frequent offers by the physician to discuss it. However, on one of her repeated admissions for treatment of urinary tract infection, she states that, had she known what life would be like, she would have refused permission for treatment of other life-threatening problems. The patient's mental status is difficult to evaluate. Her doctor thinks she is severely depressed; the intensivist believes she shows signs of early dementia. Should she have been informed of her prognosis at an earlier time even though unwilling to engage in such discussions with her physician?

Recommendation

In Case I, Mr. A.J.'s refusal of information should be respected. His surgeon has no obligation to press the matter, although he may repeat the offer of information at appropriate times. The surgeon must make a full notation in the chart that the patient has refused information. It is desirable to seek the patient's permission to discuss the detail of the procedure with an involved family member. If and when patients desire additional information, clinicians should be prepared to offer it.

Case II poses a difficult case. Here we opt for more rather than less disclosure, because the condition, though untreatable, is long lasting. The patient's long-term autonomy is respected more by providing as much information as possible to enable her to make more choices while she is physically and mentally able to learn coping mechanisms in advance. Although it might be tempting to withhold information to protect the patient, a better alternative would be to give the patient general information sufficient to indicate the seriousness of her condition as well as the uncertainty about the time, the severity, and the extent of the problems that MS can cause. This avoids the extremes of withholding too much too long or disclosing too much too soon. Considerable tact is required to find the proper balance of disclosure and reticence. Furthermore, the disclosures made as the condition worsens must be adjusted in the light of the impairments to the patient's capacity. In some cases of late-stage MS an associated dementia appears. It would be advisable to make disclosures before the patient's capacity is so severely impaired that she cannot understand.

Disclosure of Medical Error

When medical errors, as defined in Medical Error, occur, what obligation does the physician and the hospital have to disclose errors to patients? Some errors are due to negligence, but the majority are due to accident, misinformation, or organizational malfunction. Some errors do not cause harm; others effect serious harm. When medical errors occur, what obligations do physicians have to disclose them?

Case

The patient described in Completeness of Disclosure is treated by modified radical mastectomy and reconstructive breast surgery. Postoperatively, she develops persistent swelling and drainage of the breast and a fever consistent with a breast abscess. She is returned to the operating room for exploration of the operative site. The surgeon discovers that a sponge had been left in the surgical wound. It is removed, and the abscess is treated. The patient recovered and was discharged. Should the physician inform the patient that a mistake had been made?

Recommendation

Disclosure is required because harm was done to this patient by the medical error. Although the outcome was satisfactory, the patient required a second operation with attendant risks; her hospital stay, with its attendant risks, was prolonged; chemotherapy was delayed, and costs were incurred. A fundamental duty of respect for persons dictates that apology be offered the patient for harms of this sort. The surgeon should inform and apologize to the patient and report the error to the hospital, which should also apologize. Appropriate compensation should be provided.

Comment

Any inclination to hide medical mistakes must be discouraged. Secrecy is unethical and may be counterproductive. Mistakes must be reported for risk management and quality assurance purposes, and organizations should have procedures for reporting and correcting and preventing errors. Charges should be waived and appropriate compensation provided; settlement of financial claims, even without suit, may be considered. A climate of disclosure and honesty is necessary to maintain patient confidence and trust in the relationship with their physicians and with the health care institutions. Malpractice actions are certainly possible, particularly if the error is the result of negligence, but threat of legal claims is reduced in a climate of confidence and honesty. Errors that are truly harmless, without any adverse effects for the patient (e.g., an incorrect dosage of medication is prepared, but corrected before administration), must be reported within the system for control purposes. Although it is not obligatory to disclose harmless error, it is advisable to do so to sustain the climate of honesty in the relationship between the patient and physician (see Organizational Ethics).

Informed consent and truthful disclosure presuppose that the patient possesses the legal competence and mental capacity to hear and comprehend communication. There are many situations in clinical care in which patients appear to, or obviously do, lack this capacity.

Question Two—Is the Patient Mentally Capable and Legally Competent, and Is There Evidence of Incapacity?

Consent to treatment is complicated because some patients lack the mental capacity to understand information or to make choices. In the law, the terms competence and incompetence indicate whether persons have the legal authority to affect certain personal choices, such as managing their finances or making health care decisions. Judges alone have the right to rule that a person is legally incompetent and to issue a court order or appoint a guardian. In medical care, however, persons who are legally competent may have their mental capacities compromised by illness, anxiety, and/or pain. We refer to this clinical situation as decisional capacity or incapacity to distinguish it from the legal determination of competency. It is necessary to assess decisional capacity as an essential part of the informed consent process.

Definition of Decisional Capacity

In a medical setting, a patient's capacity to consent to or refuse care requires the ability to understand relevant information, to appreciate the medical situation and its possible consequences, to communicate a choice, and to engage in rational deliberation about one's own values in relation to the physician's recommendations about treatment options. Patients who obviously possess these abilities may make decisions about their care and their right to do so should be respected. Patients, who clearly lack these abilities because, for example, they are comatose, unconscious, or are disoriented and delusional, are unable to make informed, reasonable choices. For them, a surrogate decision-maker is required. However, many patients fall between these two situations: their decisional capacity may be questionable. Many ethical cases involve very sick patients whose mental status may be altered by trauma, fear, pain, physiological imbalance (e.g., hypotension, fever, mental status changes), or from drugs used to treat their medical condition. It is often unclear whether such patients are able to make informed, reasonable decisions for their own welfare.

Determining Decisional Capacity

Decisional capacity refers to the specific acts of comprehending, evaluating, and choosing among realistic options. Determining decisional capacity is a clinical judgment. The first step in making a determination of capacity is to engage the patient in conversation, to observe the patient's behavior, and to talk with third parties—family, friends, or staff. Experienced clinicians will often assess decisional capacity through a simple conversation with the patient, noting inconsistencies, incoherence, and confusion. This sort of evaluation may result in diagnoses such as dementia, delirium, or encephalopathy. However, it is often difficult to discern the signs of mental incapacity. For example, paranoid patients appear normal until certain situations trigger a delusional belief system. Often, unusual decisions may prompt suspicion about mental incapacity: for example, a patient refuses a low-risk, high-benefit treatment without which he or she faces serious injury.

Psychiatric diagnoses such as schizophrenia, depression, or dementia do not, in themselves, rule out the possibility that a patient has mental capacity to make particular decisions. Many persons with mental disease retain the ability to make reasonable decisions about particular medical choices that face them. Rather, the question is how these general psychological states and psychiatric diagnoses actually inhibit the patient's ability to understand and choose in a particular situation. When a clinician doubts a patient's decisional capacity to make particular choices, tests for cognitive functioning, psychiatric disorders, or organic conditions that may affect decisional capacity can be used. The MacArthur Competence Assessment Tool (MacCAT-T) is a commonly used clinical assessment tool. However, no single test is sufficient to capture the complex concept of decisional capacity in a clinical setting. Some conditions, such as an affective state of anxiety or depression, may be transitory or reversible with psychiatric intervention. Other conditions, such as medication-induced confusion, may be resolved by titrating medication properly. But some problems, such as inability to understand simple explanations of facts, or fixed delusions, may be impossible to remedy. The clinical techniques for making an assessment of capacity can be learned by all clinicians, and can be utilized by any trained clinician, including clinical ethicists. In some circumstances, the evidence for incapacity is more complex or obscure, particularly when psychiatric disorders may be present. In such cases, the consultation should be sought from more expert clinicians, such as psychiatrists and clinical psychologists. Also, local law and policy may require assessment by a mental health professional, particularly if guardianship proceedings are contemplated. When clinical evidence is sufficient to show that a patient is decisionally incapacitated, an appropriate surrogate decision-maker assumes authority, as explained in Surrogate Decision-Makers.

Evaluating Decisional Capacity in Relation to the Need for Intervention: The Sliding Scale Criterion

Usually a patient's capacity is not seriously questioned unless the patient decides to refuse or discontinue medically indicated treatment. When patients reject recommended treatment, clinicians may suspect that the patients' choices may be harmful to their health and welfare. They assume that persons ordinarily do not act contrary to their best interests. It has been suggested that the stringency of criteria for capacity should vary with the seriousness of the disease and urgency for treatment. For example, a patient might need to meet only a low standard of capacity to consent to a procedure with substantial, highly probable benefits and minimal, low-probability risk, such as antibiotics for bacterial meningitis. If, however, a patient refuses such an intervention, it must be quite clear that the person understands and freely accepts the risks and dangers of refusing and decides what he or she is about to do. Likewise, greater decisional capacity is necessary to consent to an intervention that poses high risks and offers little benefit. Although this sliding scale stringency test has been criticized as inadequately protecting a patient's right to refuse, it can be helpful to the clinician in deciding whether the refusal should be simply accepted or whether to take further steps to investigate and even take action to counteract the refusal by legal means.

Case I

Mrs. Cope, the 42-year-old woman with insulin-dependent diabetes, is brought by her husband to the emergency department. She is stuporous, with severe diabetic ketoacidosis and pneumonia. Physicians prescribe insulin and fluids for the ketoacidosis and antibiotics for the pneumonia. Although Mrs. Cope was generally somnolent, she awoke while the IV was being inserted and stated loudly: “Leave me alone. No needles and no hospital. I'm OK.” Her husband urged the medical team to disregard the patient's statements, saying, “She is not herself.”

Comment

We agree with Mr. Cope's assessment of the situation. Mrs. Cope has an acute crisis (ketoacidosis and pneumonia) superimposed on a chronic disease (Type I Diabetes) and she demonstrates progressive stupor during a 2-day period. At this time, she clearly lacks decisional capacity, although she could make decisions 2 days prior to the onset of her illness, and she could possibly make her own decisions again when she recovers from the ketoacidosis, probably within the next 24 hours. At this moment, it would be unethical to be guided by the demands of a stuporous individual who lacks decision-making capacity. The cause of her mental incapacity is known and is reversible. Physicians and surrogate concur on the patient's incapacity and are agreed on the course of treatment in accordance with the patient's best interest. The physicians would be correct to be guided by the wishes of the patient's surrogate, her husband, and to treat Mrs. Cope over her objections. Issues associated with surrogate decision-making are discussed in Surrogate Decision-Makers.

Case II

In the case presented at Four Typical Cases and Question One—Has the Patient been Informed of Benefits and Risks, Understood This Information, and Given Consent?, Mr. Cure has symptoms and clinical findings diagnostic of bacterial meningitis. He is informed that he needs immediate hospitalization and administration of antibiotics. Although drowsy, he appears to understand the physician's explanation. He refuses treatment and says he wants to go home. The physician explains the extreme dangers of going untreated and the minimal risks of treatment. The young man persists in his refusal.

Comment

The physician might presume altered mental status because of fever or metabolic disturbance or brain infection due to meningoencephalitis. However, the patient appears to understand his situation and the consequences of refusal of treatment. Physicians sometimes assume that anyone who refuses a physician's recommendation of necessary or useful treatment must be mentally incapacitated. Refusal of treatment should not, in and of itself, be considered a sign of incapacity. In this case, the clinician's presumption of altered mental status is reinforced by an inexplicable and unexplained refusal of care, with drastic consequences. Is it ethically permissible to treat against his will a patient who is making an irrevocable choice that will result in his death or permanent disability, who gives no reason for this decision, and for whom a clear determination of mental incapacity cannot be made?

In this case, the initial consent for diagnosis was implicit in the young man allowing himself to be brought to the emergency department. Further, he consented to diagnostic procedures, including a spinal fluid examination. The patient's refusal of treatment, however, unexpectedly introduced an incongruity between medical indications and patient preferences. It might be argued that the physician should simply permit the patient to refuse treatment and suffer the consequences, because the patient did not show clear signs of incapacitation or of serious psychiatric impairment and because competent patients have the right to make their own (sometimes risky) decisions. It might also be argued that the clinical status of the patient, a brain infection with fever, justifies a presumption of incapacitation. Certainly, in such a puzzling case, it is ethically obligatory for the physician to probe further to determine why the patient inexplicably refused treatment. Despite the physician's best efforts to explain, has the patient failed to understand and appreciate the nature of the condition or the benefits and risks of treatment and nontreatment? If the patient seems to understand the explanation, is he in denial that he is really ill? Is the patient acting on the basis of some unexpressed fear, mistaken belief, or irrational desire? Through further discussion with the patient, some of these questions might be answered.

Assume, however, that after the most thorough investigation possible under the urgent circumstances, there is no evidence that the patient fails to understand and nothing emerges to suggest denial, fear, mistake, or irrational belief. Should the patient's refusal be respected? Because the medical condition is so serious, should treatment proceed even against the patient's will? This case poses a genuine ethical conflict between the patient's personal autonomy and the physician's duty to impose paternalistic values that favor medical intervention for the patient's own good. A clinical decision to treat the patient or release him must be made quickly. Good ethical reasons can be given for either alternative.

Recommendation

This patient should be treated despite his refusal. His refusal is enigmatic, insofar as he offers no reason for refusing. Certainly, the clinician should suspect an altered mental status due to high fever and brain infection, but this patient is oriented to time and place, communicates articulately, and appears to understand the consequences of his refusal. There is no time for a thorough psychiatric examination. Given the enigmatic nature of his refusal and the urgent, serious need for treatment, the patient should be treated with antibiotics, even against his will. Should there be time, legal authorization should be sought.

This is a genuine moral dilemma: the principle of beneficence and the principle of autonomy seem to dictate contradictory courses of action. In medical care, dilemmas cannot merely be contemplated; they must be resolved. It is difficult to believe that this young man wishes to die or become permanently damaged neurologically. The conscientious physician faces two evils: to honor a refusal that might not represent the patient's true preferences, leading to the patient's serious disability or death, or to override the refusal in the hope that, subsequently, the patient will recognize the benefit or later realize that his decisional capacity was impaired.

In such situations of moral tension, clinicians may ask themselves five questions that may clarify which course is more ethically acceptable: (1) Did I explain the critical situation in a clear, understandable way? (2) Is it possible that language barriers, education level, or hearing deficits hinder the patient's understanding? (3) Might fear, pain, or lack of trust impair the patient's understanding? (4) Are there reasons to believe that there are differences in values or belief that give rise to disagreement? (5) Is the patient's decisional capacity subtly impaired by psychiatric problems (such as depression or psychosis) or by medical problems (such as encephalopathy)?

Recommendation

In this case, we accept as ethically permissible the unauthorized treatment of a patient who appears to have mental capacity. We do so on the basis of the sliding scale explained earlier. The clinician's strong suspicion that the patient's medical condition has rendered him temporarily incapacitated to make a reasonable decision in his own best interest and the urgent need for life-saving and health-preserving intervention, support the decision to intervene.

Subsequent inquiry revealed that Mr. Cure's brother had nearly died 10 years earlier from an anaphylactic reaction to penicillin. But while in the emergency department, Mr. Cure did not, and could not, recall this event and probing did not uncover it. Mention of antibiotics had triggered a psychological response of fear and denial, which manifested itself in a refusal without reason. The circumstances of his particular illness drew the physicians in the direction of rapid treatment. Even though they made an effort to uncover the source of the problem, they failed to do so, and urgent need for treatment took priority.

This case illustrates that physicians are often pressured by circumstances to make decisions before all relevant information is known. The rightness or wrongness of the clinical decision always must be assessed with respect to the clinician's knowledge at the time of the decision. One can only strive to render decisions that are as fully informed and analyzed as the circumstances permit.

Case III

Mrs. D., aged 77, is brought to the emergency department by a neighbor. Her left foot is gangrenous. She has lived alone for the last 12 years and is known by friends and by her doctor to be intelligent and independent. Her mental abilities are relatively intact, but she is becoming quite forgetful and is sometimes confused. On her last two visits to her doctor, she consistently called him by the name of her former physician, who is now dead. On being told that the best medical option for her problem is amputation of her foot, she adamantly refuses, although she insists she is aware of the consequences and accepts them. She calmly tells her doctor (whom she again calls by the wrong name) that she wants to be buried whole. He considers whether to seek judicial authority to treat her.

Comment

Mrs. D.'s mild dementia casts doubt on her ability to make an autonomous judgment. However, persons whose mental performance is somewhat abnormal should not automatically be disqualified as decision makers. Persons may not be well oriented to time and place and still understand the issue confronting them. The central test of a person's capacity is evidence that they understand the nature of an issue, and the consequences of any choice related to that issue. It is also possible to place any choice in the context of a person's own life history and values and ask whether the particular choice seems consistent with these. This is sometimes called the authenticity of the choice. Although ethicists argue over this as a criterion of mental capacity, it can often be a helpful clinical guide in evaluating the autonomy of the choice.

Recommendation

Mrs. D.'s clear assertions and the broader evidence of her life and values suggest that she has adequate decisional capacity to make an autonomous choice. Her physician does not need to seek a judicial determination of incompetence. Treatment of Mrs. D. should be limited to appropriate medical management, which, in this case, would be pain and symptom control and advance care planning.

Case III

(Continued). Mrs. D. comes to the emergency department as described previously. In this version of the case, however, she adamantly denies that she has any medical problem. Although the toes of her left foot are necrotic and gangrenous tissue extends above the ankle, she insists that she is in perfect health and has been taking her daily walk every day, even this morning. Her neighbor asserts that Mrs. D. has been housebound for at least a week.

Recommendation

In this version, Mrs. D. shows definite signs of decisional incapacity. She denies her infirmity and her need for care, and appears to be delusional. She has given no previous directions about care. In Mrs. D.'s best interests, the appointment of a guardian should be sought who would then participate in considering and authorizing surgery. If Mrs. D's condition requires immediate surgical intervention, it should be considered an emergency (see Implied Consent).

Delirium, Confusion, and Waxing and Waning Capacity

Decisional capacity is often compromised by the pathological condition called delirium, that is, a disturbance of consciousness characterized by disorientation to place and persons, distraction, disorganized thinking, inattentiveness or hypervigilance, agitation or lethargy, and sometimes by perceptual disturbance, such as hallucinations. Delirium is usually of abrupt onset and variable in manifestation. It often accompanies trauma, sudden illness, and is not uncommon in the elderly. Also, in the so-called sundowner syndrome, a patient's mental capacity waxes and wanes: early in the day the person may appear clear and oriented but later be assessed as confused.

Case

Mr. Care, with multiple sclerosis (MS), is now hospitalized. In the morning, he converses intelligibly with doctors, nurses, and family. In the afternoon, he confabulates and is disoriented to place and time. In both conditions, he expresses various preferences about care that are sometimes contradictory. In particular, when questioned in the morning about surgical placement of a tube to prevent aspiration, he refuses the placement; in the afternoon, however, he speaks confusedly and repeatedly about having the tube placed.

Recommendation

Unlike coma or dementia, delirium can be variable in presentation. Mr. Care's waxing and waning of mental status manifests the variability of delirium. In general, a delirious patient should be considered to have impaired capacity. If, however, the patient expresses consistent preferences during periods of clarity, it is not unreasonable to take them seriously. Still, supportive evidence about those preferences should be sought before they are taken as definitive.

Question Three—If Mentally Capable, What Preferences About Treatment Is the Patient Stating?

Most commonly, patients accept the recommendations of physicians. However, it is necessary to recall that it is patients who run the risks of the intervention. Even when an intervention promises a notable benefit, the patient may decide to decline the intervention. The prospective benefit may not fit into the patient's personal values and beliefs or its risks seem to great. In principle, when a patient with capacity to decide refuses recommended treatment, that refusal must be respected. In practice, the ethical problem may be complex. Thus, clinical situations arise when beliefs and values challenge the physician's recommendations.

Competent Refusal of Treatment by Persons with Capacity to Choose

Persons who are well informed and have decisional capacity sometimes refuse recommended treatment. If the recommended treatment is elective or if the consequences of refusal are minor, ethical problems are unlikely. However, if care is judged necessary to save life or to prevent serious consequences, physicians may be confronted with an ethical problem: does the physician's responsibility to help the patient ever override the patient's freedom to choose? The ethical principle of respect for autonomy, supported generally by American law, requires that refusal of care by a competent and informed adult should be respected, even if that refusal would lead to serious harm to the individual. The patient's refusal of well-founded recommendations is often difficult for the conscientious physician to accept. It is made more difficult when the patient's refusal, while competent, seems deliberately contrary to the patient's own welfare.

Case I

Elizabeth Bouvia, a 28-year-old woman, was quadriplegic due to cerebral palsy. She also had severe arthritis. She is intelligent and articulate and, despite her disabilities, earned a college degree. While hospitalized for treatment of arthritic pain, the physicians determined that she was not getting sufficient nutrition by only taking food orally. A nasogastric tube was placed contrary to her wishes. She sought a court order to have the nasogastric tube removed. Although the trial court ruled in favor of the physicians and the hospital, the California Court of Appeals upheld her right to refuse tube feeding. The court said, “The right to refuse medical treatment is basic and fundamental. It is recognized as part of the right of privacy protected by both the state and federal constitutions. Its exercise requires no one's approval. It is not merely one vote subject to being overridden by medical opinion.”

Comment

We cite Bouvia v Superior Court because it is a paradigm case of refusal of treatment by a competent person. Although a legal pronouncement, it conforms to the common interpretation of the ethical principle of autonomy.

Case II

Ms. T.O. is a 64-year-old surgical nurse who had a resection for cancer of the right breast 5 years ago. She visited her physician again after discovering a 2-cm mass in the left breast. She agrees to a treatment program that includes lumpectomy, radiation therapy, and 6 months of chemotherapy. After her first course of chemotherapy, during which she experienced considerable toxicity, she informs her physician that she no longer wants any treatment. After extensive discussions with her physician and with her two daughters, she reaffirms her refusal of adjuvant therapy.

Case III

Mr. S.P., the patient with aortic stenosis described in Truthful Communication, Case II, has cardiac symptoms that indicate the need for coronary angiography. After hearing his physician explain the urgency for this procedure and its benefits and risks, he decides he does not want it.

Comment and Recommendation

In Case I, Ms. T.O. makes a competent refusal of treatment. She is well informed and exhibits no evidence of any mental incapacitation. Even though the physician might consider the chances for prolonging disease-free survival better with chemotherapy, Ms. T.O. values her risks and chances differently. Her refusal should be respected. The physician should continue to observe Ms. T.O., particularly for the next several months during which a change of mind in favor of adjuvant therapy would still be beneficial. In Case II, Mr. S.P. is also competent. His refusal, even though it seems contrary to his interests, is an expression of his autonomy. It must be respected. That respect, however, also should encourage the physician to explore more fully the reasons for the refusal and to attempt to educate and persuade the patient. An early follow-up visit should be scheduled for both the patients to assure them that their physician remains supportive and concerned to help them deal with the consequences of their decision.

Case IV

We have seen Mrs. Cope (see Evaluating Decisional Capacity In Relation to the Need for Intervention: The Sliding Scale Criterion) admitted to the hospital for treatment of diabetic ketoacidosis with insulin, fluids, electrolytes, and antibiotics. That treatment was initiated over her objections but was authorized by her surrogate, Mr. Cope, who advised that her objections were the result of metabolic encephalopathy. After 24 hours, she awakens, talks appropriately with her family, and recognizes and greets her physician. She does not remember having been brought to the emergency department. She now complains to the nurse and physician about pain in her right foot. Examination of the foot reveals that it is cold and mottled in color, and no pulses can be felt in the right leg distal to the right femoral artery. Doppler studies confirm arterial insufficiency. A vascular surgery consultation recommends an emergency arteriogram to examine the leg arteries. The benefits and risks of the procedure are explained, as well as the risks, including impairment of renal function. Mrs. Cope declines arteriography. The surgeons explain to her that they cannot do angioplasty and stenting unless they know what vessels are involved. The surgeons warn the patient that she faces a greater risk of losing her leg than a risk of losing renal function. Mrs. Cope participates in these discussions, asking appropriate questions, and acknowledging the doctors' comments. She again declines to have the arteriography.

Comment

Although 24 hours ago, Mrs. Cope was clearly decisionally incapacitated and was properly treated for pneumonia and ketoacidosis, despite her insistence to be left alone, the current situation is entirely different. She has now regained decisional capacity, can understand the situation, can consider the risks and benefits, and make up her mind. Her physician, nurses, and the consulting vascular surgeon agree that her decision is unwise—the low risk of worsening renal function is more than compensated for by the substantial benefit of saving her leg. Mrs. Cope does not agree. Her family is divided, some siding with the doctors and some with Mrs. Cope.

Recommendation

Mrs. Cope's decision must be respected. Efforts can be made to persuade her otherwise; time can be given for reconsideration. Still, Mrs. Cope shows no signs of incapacity and has the legal and moral right to make the decision that seems to her suitable. That decision may not be the best one from the viewpoint of medical indications, but law and ethics require respect for the patient's preferences in such circumstances.

Refusals Due to Religious Beliefs and Cultural Diversity

Certain religious groups hold beliefs about health, sickness, and medical care. Sometimes such beliefs will influence the patient's preferences about care in ways that providers might consider imprudent or dangerous. Similarly, persons from cultural traditions differing from the prevailing culture may view the medical practices of the prevailing culture as strange and even repugnant. In both cases, providers will be faced with the problem of reconciling a clinical judgment that seems reasonable to them and even an ethical judgment that seems obligatory, with a patient's preference for a different course of action. We offer here some general comments about this issue.

1. Some clinicians who encounter unfamiliar beliefs may consider these beliefs “crazy” and even assume that anyone who holds them must suffer from impaired capacity. This response is wholly unjustified: it reveals bias and ignorance. The mere fact of adherence to an unusual belief is not, in and of itself, evidence of incapacity. In the absence of clinical signs of incapacity, such persons should be considered capable of choice.

2. In institutions with a high volume of patients from a particular religious or cultural tradition should foster “cultural capacity.” They should provide opportunities for providers to educate themselves about cultural beliefs. Cultural mediators, such as clergy or educated persons who can explain the beliefs and communicate with those who hold them, should be available. Competent translators should also be available for language problems. It should be noted, however, that the fact that a person speaks the same language or comes from the same country or religion as the patient does not guarantee competence as a translator or intermediary. Also, cultural stereotypes should be avoided; there are individuals from particular cultures who depart, in their values, preferences, and lifestyle, from the predominant mode of their cultures.

3. To the extent possible, a treatment course that is acceptable to the patient and provider alike should be negotiated. It is first necessary to discover the common goals that are sought by the patient and the physician, and then to settle on mutually acceptable strategies to attain those goals. The appropriate ethical response to a genuine conflict is dependent on the circumstances of the case.

Case I

A traditional Navajo man, 58 years old, is brought by his daughter to a community hospital. He is suffering severe angina. Studies show that he is a candidate for cardiac bypass surgery. The surgeon discusses the risks of surgery and says that there is a slight risk the patient may not wake up from surgery. The patient listens silently, returns home, and refuses to return to the hospital. His daughter, who is a trained nurse, explains, “The surgeon's words were very routine for him, but, for my dad, it was like a death sentence.”

Comment

This case represents a conflict between the duty of truthful disclosure and respect for the culturally diverse beliefs of the patient. In Navajo culture, language has the power to shape reality. Therefore, the explanation of possible risks is a prediction that the undesirable events are likely to occur. In Navajo culture, persons are accustomed to speak always in positive ways and to avoid speaking about evil or harmful things. The usual practice of informed consent, which requires the disclosure of risks and adverse effects, can cause distress and drive patients away from needed care. Similar reservations about the frankness of informed consent are found in other cultures. This issue will be discussed again in Chapter Four, where we cover the role of the family (see Family and Friends of the Patient).

Recommendation

Physicians who understand this feature of Navajo life would shape their discussions in accordance with the expectations of the patient. The omission of negative information, even though it would be unethical in dealing with a non-Navajo patient, is appropriate. This ethical advice rests on the fundamental value that underlies the rule of informed consent, namely, respect for persons, which requires that persons be respected, not as abstract individuals, but as formed within the values of their cultures.

Case II

Mr. G. comes to a physician for treatment of peptic ulcer. He says he is a Jehovah's Witness. He is a firm believer and knows his disease is one that may eventually require administration of blood. He shows the physician a signed card affirming his membership and denying permission for blood transfusion. He quotes the biblical passage on which he bases his belief:

I (Jehovah) said to the children of Israel, “No one among you shall eat blood, nor shall any stranger that dwells among you eat blood.”

(Leviticus 17: 12)

The physician inquires of her Episcopal clergyman about the interpretation of this passage. He reports that no Christian denomination except the Jehovah's Witnesses takes this text to prohibit transfusion. The physician considers that her patient's preferences impose an inferior standard of care. She wonders whether she should accept this patient under her care.

Comment

As a general principle, the unusual beliefs and choices of other persons should be tolerated if they pose no threat to other parties. The patient's preferences should be respected, even though they appear mistaken to others. The following general considerations apply to this case:

1. Jehovah's Witnesses cannot be considered incapacitated to make choices unless there is clinical evidence of such incapacity. On the contrary, these persons are usually quite clear about their belief and its consequences. It is a prominent part of their faith, insistently taught and discussed. While others may consider it irrational, adherence to it is not, in itself, a sign of incompetence.

2. Courts have almost unanimously upheld the legal right of adult Jehovah's Witnesses to refuse life-saving transfusions. If, however, unusual beliefs pose a threat to others, it is ethically permissible and may be obligatory to prevent harm by means commensurate with the imminence of the threat and the seriousness of the harm. Courts have consistently intervened to order blood transfusions for the minor children of Jehovah's Witnesses. Courts were once inclined to order transfusion for a parent whose death would leave children orphaned but now rarely do so because alternative care for children is usually available.

3. The refusal of transfusion includes whole blood, packed red blood cells, white blood cells, plasma, and platelets. This faith forbids autotransfusion. It may allow administration of blood fractions, such as immune globulin, clotting factors, albumin, and erythropoietin. Dialysis and circulatory bypass techniques are permitted if they do not use blood products from others. It is advisable for the physician to determine exactly the content of a particular patient's belief from the patient, particularly before a situation arises in which blood or blood products may be a recommended treatment. Accurate knowledge of the teaching should be obtained from church elders.

6. The refusal of blood transfusion by Jehovah's Witnesses differs in a significant way from refusal of all medical treatments. Jehovah's Witnesses acknowledge the reality of their illness and their desire to be cured or cared for; they simply reject one modality of care.

7. Refusal of transfusion may lead the physician to consider whether transfusion is necessary in this clinical situation. A more careful consideration of the indications for transfusion has led to more conservative use of transfusion without serious harm. Some competent surgeons have undertaken to provide surgical procedures, including coronary artery bypass, for Jehovah's Witnesses without the use of blood transfusion; bloodless surgery centers have been instituted in some places.

8. The physician's inquiry about the interpretation of the biblical passage is interesting. Presumably, she would feel more comfortable with a belief she knew was endorsed by her own religious tradition. The validity or truth of a religious belief is not relevant to the clinical decision. Instead, the sincerity of those who hold it and their ability to understand its consequences for their lives are the relevant issues in this type of case.

Recommendation

Mr. G.'s refusal should be respected for the following reasons:

1. If a Jehovah's Witness comes as a medical patient, as did Mr. G., the eventual possibility of the use of blood should be discussed and a clear agreement should be negotiated between physician and patient about an acceptable manner of treatment. Under no circumstances should the physician resort to deception. A physician who, in conscience, cannot accept being held to an inferior or dangerous standard of care should not enter into a patient–physician relationship; or, if one already exists, should terminate it in the proper manner (see Withdrawing from the Case and Abandonment of the Patient).

2. If a Jehovah's Witness, who is known to be a confirmed believer, is in need of emergency care and refuses blood transfusion, the refusal ordinarily should be considered decisive. If a patient with diminished decisional capacity is known to clinicians as a Jehovah's Witness who has previously expressed his intention to refuse blood transfusion, clinicians may omit transfusion on grounds of an implied refusal. Witnesses often carry wallet cards stating their preference. If little is known about the patient and his or her status as a believer cannot be authenticated, treatment should be provided. In the face of uncertainty about personal preferences, it is our position that response to the patient's medical need should take ethical priority.

Persons in need of medical care occasionally cannot make decisions on their own behalf. They can neither give consent to treatment nor refuse it. Their incapacity may have many causes. They may be unconscious or uncommunicative or both. They may be suffering from mental disabilities, either transitory, such as confusion or obtundation, or a chronic condition, such as dementia or a mental disease, for example, a psychotic depression that renders them mute. In such cases, alternative ways of decision making that do not rely on the direct participation of the patient, must be found. The first step in this alternative process is to inquire whether the patient has communicated any specific wishes about treatment prior to becoming mentally incapacitated. This question refers to Advance Planning and Advance Directives. The second step is to ask who should serve as the surrogate decision maker for the incapacitated patient.

Question Four—If Incapacitated, Has the Patient Expressed Prior Preferences?

The principle of autonomy requires that persons have the responsibility and the right to make decisions about how they should be treated during serious illness. Persons who are in good health rarely contemplate how serious disease or disability might affect them. However, serious illness often deprives the patient of the abilities to make decisions on their own behalf. In recent years, the concept of advance planning has been widely promoted as one solution to that problem.

Advance Planning

Advance planning encourages individuals to inform their physicians about the persons they most trust to decide on their behalf and how they would wish to be treated at a future time when they might be unable to participate in decisions about their care. The most important features of advance planning are discussion with one's family and a conference with one's doctor. The physician should document this conversation in the patient's record where it will be available in time of crisis.

In addition to these conversations, the wishes of the patient should be stated in legally acceptable documents, generally called “advance directives.” There are several forms of advance directives: (1) the “durable (or medical) power of attorney for health care”; (2) the legal instrument entitled “Directive to Physicians” in statutes enacted by various states; and (3) the less formal “living will.” Each of these forms is explained in the following paragraphs. Another form, called POLST (Physician Orders for Life-Sustaining Treatment), has been described in POLST Orders (Physicians Orders for Life-Sustaining Treatment).

The idea of advance directives has become both familiar and accepted in ethics and in law. Medicare regulations require hospitals to provide patients with information about their rights under state law to accept or refuse recommended care and to formulate advance directives. In 1990, Congress passed the Patient Self-Determination Act requiring that all hospitals and other health care facilities receiving federal funds, such as Medicare and Medicaid payments, must ask patients at the time of admission whether they have advance directives. If they do, patients are asked to submit copies for their records; if they do not, they are to be informed that they have the right to prepare such a document. If the patient wishes to do so, most hospitals will provide a copy of a standard document and a packet of information. Physicians should encourage their patients to prepare advance directives; they should become familiar with the provisions of advance directives that are legally valid in their locale.

Although the legality of advance planning has been formalized by legislation and upheld by courts, physicians may still neglect to incorporate these methods of planning into their dealings with patients. Medical practice has been slow to respond to the preferences of terminally ill patients for less aggressive end-of-life care. Several empirical studies document that physicians are reluctant to discuss end-of-life issues with patients. In one large study (SUPPORT), systematic attempts to improve communication, information, and conversation between patients and physicians met with little success. Nor did the use of outcome data or patient preferences influence physician practices. End-of-life care, at least in the intensive care setting, is currently driven more by traditional hospital and physician practices to prolong life than by patient preferences, which are often difficult to discern when the patient is critically ill.

The Durable Power of Attorney for Health Care

The most important element of advance planning is the authorization by the patient of a person who will make decisions on his or her behalf in case of mental incapacity. Such a person is commonly called a “designated decision-maker.” There are several ways in which the designation of a decision maker can be given legal force.

State legislatures may pass a statute authorizing what is called “a durable power of attorney for health care.” These statutes authorize individuals to appoint another person to act as their agent to make all health care decisions after they have become incapacitated. This person may be a relative or a friend. Most statutes require that this appointment be made in writing, although at least some states permit oral designation to be documented in the medical record of a surrogate decision-maker. These statutes give legal priority to the designated agent over all other parties, including next of kin. This clarifies the confusion that often exists about who in the family is the appropriate decision maker for an incapacitated relative. It also avoids the bureaucratic burdens and costs of a legal proceeding to appoint a guardian or conservator. A more complete discussion of the duties of these designated decision-makers appears in Surrogate Decision-Makers.

Documentation of Advance Planning: Advance Directives

The appointment of a designated decision-maker may be accompanied by a document that states, in more or less explicit terms, the forms of treatment that the patient wishes to have in the event of serious illness. Such a document is called an Advance Directive or a Directive to Physicians. Several different types of advance directives are presently in use. Although different in form and legal implications, all may be taken as evidence of a patient's preferences. These various types are:

1. Directive to Physicians in State Legislation. These are statutes passed by state legislatures. These statutes affirm a person's right to make decisions regarding terminal care and provide directions about how that right can be effected after the loss of decision-making capacity. Typically, they contain a model (or sometimes mandatory) document called Directive to Physicians. These directives, which a patient can sign and give to the physician, are typically worded in this fashion: “If at any time I should have an incurable injury, disease, or illness certified to be a terminal condition by two physicians, and where the application of life-sustaining procedures would serve only to artificially prolong the moment of my death, and where my physician determines that my death is imminent whether or not life-sustaining procedures are used, I direct that such procedures be withheld or withdrawn, and that I be permitted to die naturally.” Most such documents also contain a provision for the appointment of a designated decision-maker. Clinicians should know the specific features of the natural death acts of their states.

2. Living Wills. Advance directives may be communicated by a person to physicians, family, and friends in less formal, less legalistic fashion than the statutory document described above. These less formal documents are generally called “living wills,” (although this term is often applied to all advance care documents, including the statutory ones). One widely used document in earlier years contains the following words:

   If I become unable, by reason of physical or mental incapacity, to make decisions about my medical care, let this document provide the guidance and authority needed to make any and all such decisions. If I am permanently unconscious or there is no reasonable expectation of my recovery from a seriously incapacitating or lethal illness or condition, I do not wish to be kept alive by artificial means.

Some religious groups suggest particular forms of Living Wills for their adherents. Roman Catholics and Conservative Jews, for example, have forms that reflect their own doctrines on forgoing life support. Christian Science offers its members a document that supports their reluctance to accept medical interventions. Other forms of advance directives contain rather specific lists of particular procedures or conditions that the patient may wish to avoid or desire to have. A form called Five Wishes provides a document that allows persons to state their wishes about who will be the one to make decisions for them, the kind of medical treatment they want, how comfortable they want to be, how they want people to treat them, and what they wish their loved ones to know.

4. Finally, advance directives may be expressed in a personal note or letter that does not follow the forms described above. Such informal documentation allows a person to express in a more personal, and sometimes in a more precise way, their wishes. However, they may also be written very vaguely and, because of their unique nature, confuse those who must interpret them. Such documents, however, do have legal standing as evidence of a person's wishes in some jurisdictions. Even if there is no explicit legal recognition of personal documents, physicians should take account of them as expressions of their patient's preferences.

5. Advance directive documents should be placed in a patient's hospital chart. Physicians caring for the patient should, if possible, discuss it with the patient or surrogate.

Case I

Mr. Care, with MS, is now hospitalized because of aspiration pneumonia. He is alternatively obtunded and severely confused. He had given his physician a copy of the Directive to Physicians 4 years earlier. Now, in reviewing the directive, the physician notices the words (common in these documents), “the patient's death must be imminent, that is, death should be expected whether or not treatment is provided.” Should the physician consider that if intubation is medically indicated, it should be withheld in accord with the patient's prior preferences?

Case II

Mrs. A.T., a 70-year-old woman, very active and in good health, suffers a stroke after finishing a game of golf. She is admitted to the hospital unconscious and in respiratory distress. Studies show a brainstem and cerebellar infarct with significant edema involving the brainstem. She is provided ventilatory support. Her sister brings to the hospital a recently signed and witnessed Living Will. It contains the words, “I fear death less than the indignity of dependence and deterioration.” The patient is currently unable to communicate. She is intubated and has cardiac arrhythmias. The neurologist believes that this patient has a reasonably good chance of recovery with uncertain functional deficit which could include gait disturbance. When he mentions to Mrs. A.T.'s sister that A.T. might have some gait disturbance, the sister responds, “I know A. wouldn't want to live like that.” Should her physician, on becoming aware of the living will, extubate her? Should no-code orders be written?

Case III

Mr W.W., a brilliant academic, appointed his wife as his designated agent for medical decisions and instructed her to decline artificial nutrition or hydration if he became severely demented. Mr. W.W. is now demented but maintains a pleasant affect, though he cannot converse and no longer recognizes family. He is now unable to feed himself or take food by mouth. The nursing home proposes to place a percutaneous endoscopic gastrostomy (PEG) tube to provide nutrition and hydration. His wife refuses to allow this; the nursing home administrator argues that Mr. W.W. is no longer the person who executed the advance directive but a “pleasantly demented individual” who may be enjoying his life.

Recommendation

In Case I, the physician may withhold intubation on the basis of the patient's advance directive. The words “whether or not treatment is provided” are a clumsy attempt to define the imminence of death. In this case, those words should not obstruct the fulfillment of Mr. Care's preferences, which seem quite clear. In Case II, withdrawing ventilatory support is premature given the facts of the case. It is as yet unclear whether Mrs. A.T. will suffer “the indignity of dependence and deterioration.” However, if the patient's condition deteriorates, it may be appropriate to reconsider this option. If she recovers her ability to communicate and is competent, the exact meaning of her Living Will should be explored with her. In Case III, we believe Mr. W.W.'s instructions, and his wife's determination to follow his prior wishes should be respected even in his present state, because when he had the capacity, he obviously considered scenarios just such as his present situation. We believe that choices made on the basis of stable values should be honored.

Comment

Written advance directives are an important innovation in the expression of patient preferences. They allow persons to project their preferences into the future for consideration by those responsible for their care when they themselves are no longer capable of expressing preferences. However, advance directives may present some problems to those who must interpret them. They necessarily employ general expressions, such as “if there is no reasonable expectation of recovery” or the direction to forgo “artificial means and heroic measures.” Such language requires interpretation in the setting of the case. Further, persons may have prepared these documents without much discussion or reflection, as they go through estate planning. In addition, they usually do not specifically indicate which of the various means of life-sustaining treatments the patient desires to forgo. Finally, some commentators raise the question, whether preferences expressed while a person enjoys decisional capacity should be honored after the patient has permanently lost such capacity. Although these documents are helpful as evidence about the patient's prior preferences and should be taken seriously, they do not replace timely discussion with patients and surrogates, as well as thoughtful and responsible interpretation in the particular case. Ethics consultation may also be helpful in interpreting advance directives.

Crucial clinical decisions must often be made when a patient is very sick and unable to communicate his or her desires about care. Other persons speak on their behalf. Such persons are called surrogates. Traditionally, next of kin have been considered the natural surrogates, and clinicians have turned to family members for their permission to treat the patient. This practice has been tacitly accepted in Anglo-American law, but was rarely expressed in statutes.

Question Five—Who Is the Appropriate Surrogate to Make Decisions for the Incapacitated Patient?

In recent years, efforts have been made to clarify the determination of surrogates for medical decision making. Statutes authorize persons to appoint their own surrogates, or holders of durable powers of attorney (see The Durable Power of Attorney for Health Care). These appointed surrogates supercede any other party, including immediate family members. In addition, many states have enacted legislation that gives specific authority to certain family members, ranking them in priority (for example, first spouse, then parents, then children, then siblings, etc). These statutes avoid the need to seek judicial recourse, except in cases of conflict or doubt about legitimate decision-makers. Statutes of this sort are helpful in avoiding conflicting claims to authority. On the other hand, they may automatically appoint some party who is inappropriate. Finally, all states have provisions for the judicial appointment of guardians or conservators for those declared incompetent by a judge.

The Standards for Surrogate Decisions

The decisions of surrogates are guided by definite standards. There are two sorts of standard. The first is called “substituted judgment”: when the patient's preferences are known, the surrogate must use knowledge of these preferences in making medical decisions. The second is called “the best interest standard”: when the patient's preferences are not known, the surrogate's judgment must promote the best interests of the patient.

1. Substituted Judgment. “Substituted judgment” is when a surrogate relies on known preferences of the patient to reach a conclusion about medical treatment. This is used in two situations: (1) where the patient has previously expressed her preferences explicitly, and (2) where the surrogate can reasonably infer the patient's preferences from past statements or actions.

The first situation is the most straightforward and occurs when the patient has previously expressed preferences concerning the course of action she would desire in the present circumstances. Whether the patient recorded these preferences in writing or merely informed another person of the preferences orally, the surrogate should follow the patient's preferences as closely as possible. In effect, the surrogate is not making medical decisions for the patient, but is merely giving effect to decisions the patient would have made for herself. Courts typically apply this standard in situations where the patient's preferences are known. In a landmark legal case, In the Matter of Karen Quinlan (1976), the New Jersey Supreme Court was faced with the difficult decision of whether to permit the withdrawal of a respirator from a young woman in a persistent vegetative state with no chance for recovery. Before the incident that led to her impaired condition, the patient had made statements indicating that she would not want to be kept alive by extraordinary means if there was little chance for recovery. The court relied on these statements in applying the substituted judgment standard to permit her legal guardian to order the removal of the respirator.

When the patient has not specifically stated what she would want, a surrogate should base his decision on familiarity with the patient's values and beliefs. Obviously, only individuals with a close association to the patient are suitable as surrogates when this sort of judgment is called for. Surrogates must be careful to avoid the common pitfall of injecting their own values and beliefs into the decision-making process. Only the patient's values and beliefs are relevant to the substituted judgment decision.

Two important legal cases illustrate the importance of surrogate decision-makers and substituted judgment. In the case of Nancy Cruzan (1990), the United States Supreme Court was confronted with a request by her father, who was her legal guardian to remove artificial nutrition and hydration tubes from a young woman in a chronic vegetative state. The patient had previously made statements to her roommate that she would not want to continue her life if she could not live “halfway normally.” The Court, while endorsing the substituted judgment standard, declined to order the removal of the tubes, because the evidence about the patient's preferences failed to meet Missouri's evidentiary standards. The Court ruled that each state can adopt its own evidentiary standards in such cases. When the case was sent back to the trial court, the judge ruled that her roommate's testimony along with additional testimony from her friends constituted clear and convincing evidence of Nancy's preferences. Artificial nutrition and hydration were terminated at the request of her father and she died in 2 weeks.

In the widely publicized case of Terri Schiavo (2005), Ms. Schiavo had been in a chronic vegetative state for 15 years, fed by a feeding tube. Her husband, who had been judicially appointed as her legal guardian, was authorized to make a substituted judgment on her behalf. Mr. Schiavo asserted that his wife had expressed her preference not “to be kept alive on a machine.” Her brother-in-law and sister-in-law corroborated this testimony, which was accepted as clear and convincing evidence by all of the courts that adjudicated the case. Life support was discontinued despite numerous objections raised by her parents, her siblings, and many political figures. These two cases are described more fully in Judicial Decisions About Forgoing Life-Sustaining Treatment.

It must be acknowledged that many studies have shown that surrogates often mistakenly believe that they know what their family member would have wanted. One study, for example, showed that surrogates predicted the patient's preferences with 68% accuracy. Even then, the surrogates were more accurate than physicians. A substituted judgment standard, then, cannot always be taken at face value. The surrogates' information should be discussed, probed, and checked against other sources of information. At best, information derived from surrogates can help to formulate a picture of the values and beliefs of the patient. Still, legitimate surrogates must be permitted to make these decisions as long as clinicians believe they are acting in good faith.

2. Best Interests. If the patient's own preferences are unknown or are unclear, the surrogate must consider the best interests of the patient. This requires that the surrogate's decision must promote the individual's welfare, which is defined as making those choices, namely, about relief of suffering, preservation or restoration of function, and the extent and sustained quality of life, that reasonable persons in similar circumstances would be likely to choose. The concept of best interest is discussed in connection with quality of life, in Best Interest Standard for Children.

Implied Consent

In life-threatening emergencies, patients may be unable to express their preferences or give their consent because they are unconscious or in shock. No surrogate may be available. In such situations, it has become customary for physicians to presume that the patient would give consent if able to do so, because the alternative would be death or severe disability. This is sometimes called implied consent. The patient is not, of course, giving consent; the physician is presuming that the patient would consent, if they could. From the ethical point of view, the principle of beneficence, which prescribes that a person has a duty to assist someone in serious need of help, is the ethical justification for emergency treatment of the incapacitated person. It is a reasonable presumption that a person would, if they could, accept help in a critical situation. Implied consent also provides the physician with a legal defense against a subsequent charge of battery, although it may not defend against charges of negligence if the emergency treatment falls below acceptable standards of care; for example, a physician incorrectly performs a Heimlich maneuver, thereby breaking ribs and puncturing a lung.

Decisions for Patients Who Lack Surrogates

A patient who has lost decisional capacity may have no person who can be identified as a surrogate. The term “unbefriended or unrepresented patient” is sometimes used.

Case

An elderly woman collapses in a bus station. She is carrying no identity. She is taken to the emergency department. She is badly malnourished with end-stage liver disease. She also has pneumonia. She is intubated, on grounds of an emergency implied consent. She remains stuporous. After 3 days in the ICU, she develops hepatorenal syndrome and renal failure. Emergency dialysis is initiated on grounds of implied consent. However, after a week, question arises about terminating respiratory support and dialysis, since her underlying disease is liver failure and, due to age and comorbidities, she is not a candidate for transplantation.

Comment

A legal proceeding to appoint a guardian for this patient can be instigated. The Hospital Social Work Department is adept at this task. However, often it takes considerable time and, as in this case, the critical need for a surrogate emerged slowly. There is no agreed approach to a problem of this sort. If legal recourse is not feasible, ethics committees may review the case and, on the basis of principles of beneficence and nonmaleficence, advise clinicians regarding treatment. However, ethics committees are hospital entities, and as such, open to allegations of conflict of interest. It is important that hospitals formulate a policy that would provide for a decision-making process in which conflict is reduced, for example, by having an outside consultant or by submitting the case to another ethics committee.

Statutory Authority to Treat

In all jurisdictions, statutes exist that authorize psychiatrists to restrain mentally ill persons who are dangerous to themselves or others for psychiatric treatment against their will. These statutes pertain to persons who are suffering from mental disease, and the treatment authorized is treatment only for mental disease. In some situations, both mental disease and medical problems may be present. These situations of dual diagnoses deserve special consideration.

Case

A 75-year-old veteran of the Vietnam War is brought to the hospital by a friend. He has a long history of mental disease and alcohol addiction. He has been drinking and is hallucinating that Viet Cong are attacking him. He is breathless, has fainted twice in the last hour, and is incontinent of urine. He says his heart is breaking through his chest. Still, he says he must leave the hospital because it is being bombed. The admitting resident writes in the chart, “I noted hallucinations and psychotic ideation; I am putting the patient on a medical hold and keeping him in the hospital for observation. Diagnosis: paroxysmal supraventricular tachycardia. Medications: haloperidol, digitalis. Further evaluation: assess electrolytes.”

Comment

The question is whether the statutory authorization for involuntary hospitalization allows medical treatment as well as treatment for mental illness. The answer is, it does not. The statutes refer to the treatment of mental illness alone as the justification for involuntary commitment. If medical treatment is needed, the patient must consent or, if unable to do so, a legally authorized decision-maker must be appointed. If medical treatment is needed for a life-saving emergency, implied consent suffices.

Recommendation

The emergency department resident should immediately request psychiatric consultation. The consulting psychiatrist will examine the patient and, having made a diagnosis of paranoid schizophrenia, may authorize involuntary commitment for treatment of this mental disorder. The emergency department resident does not have this authority. The term medical hold is sometimes used to describe this procedure but it is misleading for two reasons: physicians, other than psychiatrists, cannot “hold” patients, and only psychiatric treatments may be administered.

A therapeutic relationship is constituted by two parties cooperating in the effort to achieve the goals of medicine, that is, curing and caring. Both parties can withdraw, partially or totally, willingly or unwillingly, from this cooperative effort. Patients may give consent to a treatment recommendation but fail to follow the recommended treatment. At the same time, they express a desire to continue the therapeutic relationship. This situation was once commonly called “noncompliance,” although that term is seldom used today because of its paternalistic overtones. The problem, whatever it is called, can create persistent ethical dilemmas for all involved. Also, there are occasions on which physicians and other health professionals are unwilling to provide some forms of care. This raises the ethical problem of conscientious objection.

Question Six—Is the Patient Unwilling or Unable to Cooperate with Medical Treatment? If So, Why?

Physicians have the responsibility to recommend to patients a course of treatment or behavior that would, in the physician's best judgment, help the patient. Patients have the right to be informed of the benefits and risks associated with these recommendations and to accept them or refuse them. These rights and responsibilities are in principle quite clear. However, patients may fail to act on their physician's recommendations, yet continue to seek the care of the physician. In place of the terms “noncompliance” or “nonadherence,” we use the expression “failure to cooperate with medical recommendations.” The problem posed to physicians is how they should perform their ethical responsibilities to patients who ask for help but for some reason do not, or cannot, follow the course of treatment that is offered.

Failure to Cooperate with Medical Recommendations

A patient may not cooperate with recommended treatment for many reasons. The following cases represent two examples of this very complex problem.

Case I

Ms. Cope is a 42-year-old woman with insulin-dependent diabetes who, despite good compliance with an insulin and dietary regimen, experienced frequent episodes of ketoacidosis and hypoglycemia that necessitated repeated hospitalizations and emergency room visits. For the past few years, her diabetes has been better controlled. She has been actively involved in her diabetic program, has been scrupulous about her eating habits, and has maintained ideal body weight. Twenty-one years after the onset of diabetes, she appears to have no functional impairment from her disease.

Three years ago, Ms. Cope went through a stormy divorce and lost an executive position. She has gained 60 lb and has become negligent about her insulin medication. She has also started to drink alcohol excessively. During these years, she has required frequent admissions to the hospital for diabetic complications, including (1) ketoacidosis, (2) traumatic and poorly healing foot ulcers, and (3) alcohol-related problems. While in the hospital, her diabetes is easier to manage but even in the hospital, she is frequently found in the cafeteria eating excessively. On two admissions, blood alcohol levels in excess of 200 mg/dL were detected. Soon after discharge from the hospital, her diabetic control lapses.

Her physician is frustrated. He blames the recurring medical problems on the patient's unwillingness to participate actively in her own care by losing weight, taking insulin regularly, and giving up alcohol. The patient promises to change her lifestyle, but on discharge from the hospital, she relapses almost immediately. The physician urges her to seek psychiatric consultation. She agrees. The psychiatrist suggests a behavior modification program, which proves unsuccessful.

After 10 years of working closely with this patient, the physician considers withdrawing from the therapeutic relationship, because he senses he is no longer able to help the patient. “Why keep this up?” he says to the patient. “It's useless. Whatever I do, you undo.” The patient resists this suggestion. She complains that the physician is abandoning her. Does persistent failure to comply with medical advice justify an ethical decision to withdraw from a case?

Comment

The following comments are relevant to this question:

1. Patients such as Ms. Cope are very frustrating to those who attempt to care for them. Occasionally, the physician will accuse the patient (in words or in attitude) of being irresponsible. The patient engages constantly and, apparently, willfully in behavior that poses a serious risk to health and even to life. Such patients place great strain on the doctor–patient relationship; often the accommodation between doctor and patient founders because of the strain.

2. The accusation of irresponsibility can be an example of the ethical fallacy of “blaming the victim”; the actual fault may lie with a more powerful party who finds a way to place the blame for his own failure on the ones who suffer its effects. The apparent irresponsibility of patients may result from the failure of a physician to educate, support, and convey a personal concern and interest in the patient. Even more, persons may be rendered incapable of caring responsibly for themselves by the way their physician deals with them. An excessive paternalism may stifle responsibility. Although Ms. Cope's physician did not have these faults and had made solicitous efforts to support Ms. Cope, this problem may lie behind many cases of a patient's failure to cooperate.

Recommendations

1. It is important to determine whether and to what extent the patient is acting voluntarily or involuntarily. Much uncooperative behavior is voluntary. Patients either choose to ignore the regimen in favor of other behaviors they value more than health (a goal that, in an asymptomatic disease, may not seem very urgent or immediate), or fail to cooperate because of such factors as irregular routine, complicated regimen, habitual forgetfulness, or poor explanation by the physician. Some noncompliance is nonvoluntary, arising from profound emotional disturbance or psychological disabilities and ambivalence.

2. If the physician judges that noncooperation is voluntary, a result of the patient's persistence in voluntary health risks, then reasonable efforts at rational persuasion should be undertaken. If these fail, it is ethically permissible for the physician to adjust therapeutic goals and do the best in the circumstances. It is also ethically permissible to withdraw from the case, after advising the patient how to obtain care from other sources. This should be done in accord with the ethical and legal standards noted in Withdrawing from the Case and Abandonment of the Patient.

3. If noncooperation is the result of a psychological disorder, the physician has a strong ethical obligation to remain with the patient, adjusting treatment plans to the undesirable situation. Professional assistance in treating the disorder should be sought. The physician may experience great frustration, but the frustration is not, in itself, sufficient to justify leaving the patient.

Case II

Ms. Cope is admitted for inpatient treatment of obesity with a protein-sparing modified fasting regimen. She was found repeatedly in the cafeteria cheating on the diet. Clinicians made reasonable efforts to persuade her to change her behavior. A decision was made to discharge her. She protested vigorously.

Recommendation

It is ethically permissible for the physician to terminate therapeutic efforts and to discharge the patient from the hospital. The goals of therapy are unachievable because of the patient's failure to participate in the program. This decision may be the culmination of a long history of failure to cooperate leading to the physician's decision to withdraw from the care of Ms. Cope. Also, a return to prior lifestyle, while inadvisable and potentially harmful, is not the direct cause of harm to the patient.

Failure to cooperate in a medical regimen is a most complex problem that may be rooted in psychological, social, or economic features of the patient's life, as well as in the difficulties of understanding and navigating the medical system. It is incumbent on physicians to understand the deep roots of this problem.

The Disruptive Patient

On occasion, persons who are under care in a health care facility may cause serious disruption and even endanger other patients. At the same time, they may desire to continue in treatment. Physicians who encounter such challenging patients may be concerned that discharging them because of the danger posed to others or the disruptions caused may induce serious harm, even death, for the patient.

Case

Mr. R.A., an intravenous drug addict, is admitted for the third time in 3 years with a diagnosis of infective endocarditis. Three years ago, he required mitral valve replacement for Pseudomonas endocarditis, and 1 year ago, he required replacement of the prosthetic valve after he developed Staphylococcus aureus endocarditis. He now is admitted again with S. aureus endocarditis of the prosthetic valve.

After 1 week of antibiotic therapy, he continues to have positive blood culture results. One cardiac surgeon refuses to operate, saying that the patient is a recidivist and that correcting his drug addiction is futile. Another surgeon agrees to operate on him. Mr. R.A. consents to open heart surgery to replace again the infected prosthetic mitral valve. Postoperatively, for 10 days he is cooperative with his management and antibiotic treatment. While on this treatment, he becomes afebrile and blood culture data are negative. Plans are in place for his discharge, with venous access for antibiotics.

He then begins to behave erratically. He leaves his room and stays away for hours, often missing his medications. On several occasions, a urine screening test demonstrates the presence of opiates and quinine, revealing that he is using illicit narcotics even while being treated for infective endocarditis. Two repeat blood culture tests now grow S. aureus. On two separate occasions, he verbally abuses two nurses who reprimand him for being away from his room. Several patients on the unit complain that he threatened them. Nurses suspect that he is also dealing drugs within the hospital. This information becomes known to the patient's physician; despite the fact that the patient's infective endocarditis has not been treated optimally, the physician asks him to leave the hospital immediately.

Comment

Considerations leading to an ethical justification of this decision are as follows:

1. The patient's use of intravenous street drugs at the same time that his physicians were attempting to eradicate his infective endocarditis indicated that the likelihood of medical success in this case, both short-term and long-term, was not great. Physicians are not obliged to treat people who persist in actions that run counter to the goals of treatment.

2. The patient wanted to be treated and, at the same time, continued his abusive behavior. The physicians are obliged to determine that the patient has the mental capacity to make such choices and that he was not suffering from a metabolic encephalopathy (see Determining Decisional Capacity).

3. Providers should try to understand the complex causes of his behavior and motivations. They should avoid “blaming the victim.” Serious efforts should be made to counsel, to negotiate, and to develop “contracts” that make clear to him the consequences of his behavior. Early and repeated warnings should be issued. One identified provider should be responsible for dealing with this patient.

4. In addition to his uncooperative behavior, which is harmful to himself, he disrupts the functioning of the hospital and impedes the care of other patients. This additional contextual feature provides an additional argument in favor of his discharge. The ethical basis of this argument is fairness: his behavior deprives other patients of rightful attention (see Allocation of Scarce Health Resources).

Recommendation

Clinicians should recognize that this patient's primary medical problem is not endocarditis, serious though that condition is. As the first surgeon noted, it is drug addiction. The focus of his treatment should shift to treatment for that problem. The management of addiction requires long-term outpatient care and support. Nevertheless, he is at risk of dying in the short term from another episode of infective endocarditis. In our opinion, he should be discharged with an indwelling venous line and with home nursing service to administer antibiotics. This is not optimal care, but it would provide reasonable care to this patient while protecting the interests of others. If he proves intractable, then it can be argued that efforts to manage his endocarditis by surgical means will not be effective and the patient may be discharged.

Signing Out Against Medical Advice

Mr. R.A. might simply walk out of the hospital, leaving even before physicians judge his treatment adequate. When patients choose to discharge themselves in this manner, most hospitals request them to sign a statement confirming that they are leaving against medical advice (AMA). The patients, however, cannot be forced to sign the statements; they have the right to leave at will. The document merely provides legal evidence that the patient's departure was voluntary, and that the patient was warned by the physician about the risks of leaving.

Conscientious Objection

The preferences of patients have significant moral authority and must be considered in every treatment decision. Even the preferences of decisionally incapacitated patients are relevant to the decisions of those who must act on their behalf. However, the authority of patients' preferences is not unlimited. The ethical obligations of physicians are defined not only by the wishes of their patients but also by the goals of medicine. Physicians have no obligation to perform actions beyond or contradictory to the goals of medicine, even when requested to do so by patients. Patients have no right to demand that physicians provide medical care that is contraindicated, such as unnecessary surgery or medically inappropriate drug regimens. Patients may not demand that physicians do anything illegal. For example, physicians must not provide certification of a disability that the patient does not have or fail to report at a patient's request a legally reportable communicable disease. Finally, physicians may refuse to accede to a patient's wishes when they believe that doing so will make them complicit in something they believe is immoral.

Traditionally, medical ethics has required physicians to abstain from moral judgments about their patients in regard to medical care. For example: (1) an emergency department physician is expected to provide competent care to both the wounded assailant of an elderly person and to the assaulted party; and (2) a physician should treat, without censure, venereal disease contracted in what the physician considers an immoral liaison. However, despite this professional neutrality, physicians and nurses have their own personal moral values. On occasion, they may be asked not merely to tolerate what they consider immorality but to participate in effecting what they consider an immoral action desired by the patient. For example: (1) a male patient requests a physician who considers transsexualism morally wrong to prescribe female estrogens to promote secondary female characteristics; and (2) a Catholic nurse is asked to participate in an abortion. This is described as conscientious objection, which means a judgment formed on the basis of sincerely held moral values that participation in some particular action would be violating one's own moral standards. A person should be able to articulate a reason for this judgment that refers to the underlying moral values. Traditionally, laws permitting abortion and laws permitting physician-assisted dying contain explicit exemptions for conscientious objection. However, providers may invoke conscientious objection in other situations that may be not only controversial but also not legally justified. For example, a pharmacist refuses to fill a valid prescription for a “morning after pill.” A physician may conscientiously judge that a particular law is unethical. For example, a physician who is treating patients with AIDS is convinced that smoking marijuana relieves the pain and nausea of advanced illness, but state law prohibits prescription of medical marijuana.

Physicians and nurses may refuse to cooperate in actions they judge immoral on grounds of conscience. It is important, in forming one's conscience, to separate the moral values to which one is committed from personal distaste or prejudice. For example, a physician refuses to undertake the care of a Jehovah's Witness with a hemorrhagic diathesis on moral grounds, although, in fact, the physician does not want to take the risk that the patient may die from blood loss. Institutions and programs should establish policies about conscientious objection and make the policies as well as the state laws clear to those who work in that institution or program. The traditional ethics of conscientious objection require the objector to make clear his or her position in a public way and to accept the consequences of objection, such as legal liability for violation of a law.

Withdrawing from the Case and Abandonment of the Patient

At times, such as the case of Ms. Cope (see Failure to Cooperate with Medical Recommendations), the physician may serve the patient best by deciding to dissolve the physician–patient relationship. The physician's principal goal is to help patients in the care of their health. If this proves impossible, the physician may best demonstrate ethical responsibility by withdrawing from the case.

Physicians who terminate a relationship with a patient sometimes wonder whether they can be charged with abandonment. Abandonment, in the legal sense, means that a physician, without giving timely notice, ceases to provide care for a patient who is still in need of medical attention or when the physician is dilatory and careless (e.g., failure to see the patient at a time of urgent need or failure to judge the patient's condition serious enough to warrant attention). A charge of abandonment can usually be countered by showing that the patient did receive warning in sufficient time to arrange for medical care. The physician is not legally obliged to arrange for further care from another physician, although there is a legal obligation to provide full medical records to the new attending physician. If the physician does intend to maintain the relationship with the patient but will be unavailable for a time, there is a legal obligation to arrange for coverage by another physician. Failure to do so can be construed as abandonment.

A physician may withdraw from the care of a patient without legal risk. The decision to do so should meet ethical as well as legal standards. Physicians inherit an ethical tradition that requires them to undertake difficult tasks and even risks for the care of persons in need of medical attention. Inconvenience, provocation, or dislike are not sufficient reasons to exempt a physician from that duty. That obligation is, of course, limited by several conditions—if the patient absorbs excessive time and energy, drawing the physician away from other patients; if the patient is acting in ways to frustrate the attainable medical goals; or if the patient is endangering others by overt action—the ethical obligation to continue to care would be diminished. These conditions appear to be verified in the case of Mr. R.A. Finally, a physician may decline to provide nonbeneficial treatments or treatments contrary to conscience, as noted in The Disruptive Patient.

Complementary/Alternative Medicine

Some persons seek health care from alternative providers outside or in addition to conventional scientific medicine. It is estimated that 1 out of 3 adult Americans make a total of 425 million visits to alternative providers—more than are made to primary care practitioners. These providers include naturopaths, homeopaths, chiropractors, acupuncturists, and practitioners of traditional Chinese, Indian, and Native American medicine. In several states, homeopathic and naturopathic doctors are licensed as medical practitioners. Methods include spiritual healing, physical manipulation, special diets, imaging, relaxation techniques, massage, and vitamin therapy, and attention is paid to nutrition, exercise, and stress reduction. These methods are described as alternative or complementary medicine (CAM). Integrative medicine designates programs that attempt to find and utilize the benefits of both alternative and orthodox medicine. Some prominent medical institutions have established programs in integrative medicine.

Case

A 64-year-old man has been under the care of a family physician for increasingly severe osteoarthritis. On one visit, he complains of dizzy spells. A workup reveals no specific cause for his dizziness. In discussing his arthritis, he tells his doctor that he gets some relief from mushroom tea. The physician has seen reports of illness caused by “kombucha tea,” which, although called “mushroom tea,” is actually a colony of bacteria and yeast fermented in sweetened tea. The physician questions the patient, and the patient reluctantly admits that he has been seeing a “natural healer” who sold him the concoction.

Comment

Many persons who visit alternative practitioners are also under the care of regular practitioners, using unconventional therapies as adjuncts rather than replacements of conventional therapy. Many of these patients do not inform their regular physician about their use of alternative treatment. Persons are often motivated to seek alternative treatments because they are less arduous and less costly than conventional treatments, or because patients are frustrated with the failure of conventional treatment to assuage problems such as chronic back pain, headache, insomnia, anxiety, and depression. Most conventional practitioners know little about alternative medicine, and many commonly disdain it and disparage its claims.

Recommendation

1. Conventional physicians should encourage their patients to reveal their use of alternative medications. They should refrain from disparaging remarks that can inhibit patients from speaking about what they fear will lead to anger or ridicule on the physician's part.

2. Conventional physicians should try to attain a better understanding of the healing systems to which patients have recourse and to appreciate their beneficial features. Persons often take substances that are advertised or promoted on Web sites, without supervision of either alternative or regular physicians. This unsupervised medication regime may have adverse effects. For example, licorice, an herb used in many supplements promoted for relief of fatigue can lower serum potassium significantly; many supplements, such as fish oils, may affect coagulation. When regular practitioners see these effects, they may neither know that their patients are using these substances, nor understand their nature and risks. Patients should be asked whether they are using alternative medications. Consultation with an established CAM practitioner or program may be advisable. Reliable information about herbal medications can be found in the Botanical Safety Handbook (CRC Press) or at HerbMed www.herbmed.org.

3. When patients are using alternative therapies for serious conditions to the neglect of demonstrated efficacious therapies or when they are using therapies that have toxic effects, physicians should carefully explain the consequences of such a course. A clumsy or uninformed approach may confirm patients in the use of inadvisable therapy rather than convert them to more appropriate ones.

4. In serious conditions, where the use of alternative medicine may impede cure or be dangerous, the physician should ask the patient's permission to contact the alternative provider, explain the situation, and negotiate a program that will be acceptable to the patient as well as conformable to the ethics of the providers.

5. Hospitals should develop policies that acknowledge the prevalence of alternative therapies and establish guidelines for acceptable collaboration between regular physicians and providers of alternative treatments.

Authority of Parents and Consent of Minors

Children are considered incompetent under the law. The medical care of infants and children is authorized by the usual surrogates, namely, the parents of the child, or in unusual circumstances, by other parties authorized by law. In addition, the law designates the age at which young persons are deemed competent to consent. Two ethical issues about surrogacy for children may occur. First, it is sometimes necessary to determine the relevance and weight of parental preferences when these preferences conflict with the recommendations of providers. Second, children become capable of expressing their preferences at various ages. When they do express preferences, it is necessary to determine how reasonable and relevant these preferences are in matters of medical care. Finally, certain general exceptions to parental authority exist: special statutes give certain authority to minors to decide health care on their own.

Parental responsibility is a moral, social, and legal matter. It is commonly agreed that parents have the responsibility for the well-being of their children and that they have a wide range of discretion to determine the particular circumstances that this well-being will encompass. At the same time, parental discretion is not absolute. Infants and children are, in American law, considered persons, with certain interests and rights that must be acknowledged regardless of their parents' preferences. It is usually said that the best interests of the child set limits on the discretion of parents about the medical treatment of their offspring. Also, American society accepts, as an obligation, the protection of children from harm, even at the hands of their parents. Further, the welfare of children is taken as a serious social obligation.

As children become mature enough to articulate their preferences and reasons for them, they are entitled to increasing respect for these preferences. They are led toward responsible maturity by this respect and by education. However, it is sometimes difficult to decide how much respect to afford a child's preferences. It is difficult to discern how rational these preferences are because consequences, alternatives, and relative values are often not perceived clearly by children. Certain sorts of decisions made by nonadults have been codified in the law. Persons who are younger than the statutory age of consent (18 years in all states), may come to a physician on their own initiative. When their medical problem is not an emergency, such persons can be treated only with the consent of their parents or legal guardian, however, there are several exceptions to this rule.

1. Almost all jurisdictions now have special provisions for the treatment of certain conditions without the consent of the minor's parents. These conditions usually include drug abuse and venereal disease (contraception, abortion, and mental illness are sometimes included, and at other times, specifically excluded). Most states permit minors to make decisions about contraception and abuse treatment, without parental permission.

2. The emancipated minor is a young person who lives independently of parents, physically, financially, or otherwise. Married minors, those in the armed forces, or those living away at college are considered emancipated. They may request treatment and be treated without parental consent.

3. “Mature minor” designates a person who is below statutory age and who is still dependent upon parents but who appears to make reasoned judgments. These young persons pose something of a quandary to the physician from whom they seek care. On the one hand, they appear able to decide for themselves; on the other hand, their parents remain legally responsible for them. Legal authorities conclude that the physician may respond to their requests under the following conditions: (1) The patient is at the age of discretion (15 years or older) and appears able to understand the procedure and its risks sufficiently to be able to give a genuinely informed consent; (2) the medical measures are taken for the patient's own benefit (i.e., not as a transplant donor or research subject); (3) the measures can be justified as necessary by medical opinion; and (4) there is some good reason, including simple refusal by the minor to request it, why parental consent cannot be obtained. It is also advisable for the physician to clarify with the minor any billing arrangements, since medical bills sent to parents may breach the confidentiality of the patient.

Parental Incapacity

Pediatricians and other providers may occasionally suspect parents of serious incompetence in the care of their child. This suspicion must be carefully evaluated. In some cases, a parent or parents may manifest the signs of a psychiatric disorder that might render them incapacitated for rational consideration of matters concerning their child. For example, Munchausen syndrome by proxy is sometimes encountered when parents covertly make their children ill. A psychiatrically disabled parent may constitute a danger to the child. The existence and extent of psychiatric disease should be evaluated and, if indicated, Child Protective Services should be notified. Another sort of incompetence is manifested by parents who seem unable to comprehend the needs and interests of a child. Failure to provide for the ordinary needs of a child may represent incompetence caused by ignorance, moral turpitude, or substance addiction. In other cases, failure may be due to parental inexperience or to social conditions. Suspicion of incompetence should be evaluated for its degree, causes, remediability, and so forth. Most important, the alleged incompetence should be relevant to the problem at hand. Social workers and others expert at evaluation of social and environmental conditions are invaluable contributors. If suspicions are verified, legal remedies may be sought depending on the seriousness and urgency of the situation.

Standard for Parental Preferences

When parents are properly identified and appear competent as decision makers, they are morally and legally required to observe certain standards in their decision for their child. In general, they must promote the best interests of the child. In pediatric care, the appropriate course of treatment will usually represent the pursuit of the child's interests: restoration of health, relief of pain, support of growth, etc. However, in some situations, the best interest of the child may be unclear. This happens when a decision about forgoing life-supporting or life-saving interventions must be made. What standards, then, must guide parental choice in this difficult matter? We offer the following considerations:

1. A well-founded judgment of medical inefficacy or futility justifies a parental decision to discontinue treatment that is supporting the life of a child. However, physicians and parents may disagree about this judgment. Parents may too quickly reach a judgment of inefficacy when treatment does not produce an immediate result or, overcome by the frustration of a long illness, conclude that treatment is futile. More commonly, parents may be emotionally unable to acknowledge the failure of treatment to save their child. They may demand that “everything be done” to maintain the biological viability of the child even in circumstances where the physician regards further treatment as inefficacious or futile. The physician has the duty to educate the parents, to explain the medical situation, and to strive to achieve a common understanding. Naturally, every effort must be made to reach an amicable understanding. However, it must be clear that the physicians and the institution have no ethical obligation to continue to provide treatment that, in their best professional judgment, is inefficacious or futile (see Medical Futility).

2. If intervention is not clearly ineffective or futile, decisions should be made in view of the best interests of the infant or child. The phrase “best interests” is explained in Surrogate Decision-Makers and Best Interest Standard Quality of Live. Here the interests of the decision makers, namely, the parents and the physicians, or the interests of society at large are not the central focus: The interests of the patient constitute the standard for decisions made by others on behalf of that patient.

3. In cases where differences of opinion exist between parents and physicians or between parents themselves, a review by an ethics committee or an ethics consultation may be helpful. If differences are irreconcilable, it may be necessary in rare cases to have recourse to the legal system that has been established to protect the welfare of those incapable of protecting themselves. Such recourse is often extremely traumatic for all concerned, but it acknowledges that the infant or child, despite its inability to speak for itself, has a valued place in our society.

Refusal of Treatment by Minor Children on Grounds of Religious Belief

Children may sometimes refuse medical treatment because they belong to religious groups that repudiate medical care. This poses a difficult problem for physicians.

Freedom of religion is highly valued and is protected by the Constitution of the United States. However, it is the freedom of the believer, capable of free and informed adherence to a faith, that is valued. In the words of a Supreme Court decision about the authority of a Jehovah's Witness parent, “Parents may be free to become martyrs themselves, but it does not follow that they are free… to make martyrs of their children” (Prince v Massachusetts, 1944).

Even so, parents are given some latitude in determining appropriate treatments for their children. In a 1991 case, the Delaware Supreme Court permitted the Christian Scientist parents of a 3-year-old child suffering from Burkitt's lymphoma to refuse chemotherapy that had a 40% chance of success. The court reasoned that the probability of success, when weighed against the parents' interests in directing the child's care and the possible harmful effects of the chemotherapy, was too low to justify forcing the child to undergo the medical treatment (Newmark v Williams, Delaware, 1991).

Even in states with religious exemptions, physicians and hospitals should be prepared to bring before the Child Protective Agency and to the courts any case involving “medical interventions of clear efficacy that can prevent, ameliorate, or cure serious disease, incapacity, or loss of life and interventions that will clearly result in prevention of future handicaps or disability for the child” (Child Abuse Prevention and Treatment Act, 1985, “Baby Doe Regulations”).