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.
2.2.1 Question Two—Is the Patient Mentally Capable and Legally Competent or Is There Evidence of Incapacity?
Consent to treatment is compromised 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 effect 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.
JF. Capacity for autonomous choice. Principles of Biomedical Ethics. 7th ed. New York, NY: Oxford University Press; 2012.
J. Capacity. In: Singer
AM, eds. The Cambridge Textbook of Bioethics. New York, NY: Cambridge University Press; 2008: chap 3.
P. Assessing Competence to Consent to Treatment. New York, NY: Oxford University Press; 1998.
B. Decision-making capacity. Resolving Ethical Dilemmas: A Guide for Clinicians. 5th ed. Philadelphia, PA: Lippincott Williams & Wilkins; 2013: chap 10.
2.2.2 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 they are comatose, unconscious, or seriously demented are unable to make informed, reasonable choices. For them, a surrogate decision maker is required. However, many patients fall between these two situations. Many ethical cases involve very sick patients whose mental status may be altered by trauma, fear, pain, physiologic imbalance (eg, 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. When decisional capacity is uncertain and the medical situation is serious, physicians are in a difficult position: the autonomy principle permits decisionally competent persons to make any choice, including bad choices, but what should be done if it is unclear whether the patient is or is not incapacitated? In presence of such doubt, a physician may intervene in a life-threatening situation on grounds of “implied consent.” However, in a nonemergency, non–life-threatening situation, legal procedures for substitute decision making should be followed, as explained in Section 2.4.
2.2.3 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, or 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 they face serious injury.
Certain 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 Test (MacCAT-T) is a commonly used clinical assessment tool. Also Aid to Capacity Evaluation (ACE), developed by the Joint Centre for Bioethics, University of Toronto, is being adopted in many hospitals. 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, neuropsychologists, 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 Section 2.4.
T. Assessing patient’s capacities to consent to treatment. New Engl J Med
P. MacArthur Competence Assessment Tool for Treatment. Sarasota, FL: Professional Resource Press; 2001.
2.2.4 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 patient’s choice 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. 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.
J. Competency to give an informed consent. A model for making clinical assessments. JAMA 1984; 252: 925–927.CrossRef
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 II diabetes), and she develops progressive stupor during a 2-day period. At this time, she clearly lacks decisional capacity, although she could make decisions two days earlier before 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 Section 2.4.
CASE II. In the case presented in Sections 1.0.8 and 2.1.1, 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. Still, the usual clinical signs of altered mental status are absent: 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 through 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 case presents 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 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, educational level, or hearing deficits hinder the patient’s understanding? (3) Might fear, pain, lack of trust impair the patient’s understanding? (4) Are there reasons to believe (as there are with a Jehovah’s Witness patient [see Section 2.2.8] but not with this student) 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 above (see Section 2.2.4). 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.
After his recovery, Mr. Cure revealed that his brother had nearly died 10 years earlier from an anaphylactic reaction to penicillin. 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., age 81, 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, is able to describe them, and says that she 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.
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 might 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 he or she understands the nature of an issue and the consequences of any choice relating 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 should not 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 two weeks.
RECOMMENDATION. In this version, Mrs. D. shows definite signs of decisionally 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 in which implied consent suffices (see Section 2.4.3).
2.2.5 Denial, Delirium, Confusion, Waxing, and Waning Capacity
Psychological denial may appear in clinical cases: as in the above cases, patients may deny that they are ill or that they need medical care. Denial may mean many things: it may manifest a common defense mechanism in face of a threat or it may be a genuine manifestation of a psychological disorder. In the case of Mrs. D, denial of her gangrenous foot is manifested in two ways: her claim that she has been walking when she has been bedbound and her insistence that there is nothing wrong with her foot. Psychological denial, which may sometimes be quite subtle, is blatant in this case. It appears that Mrs. D is sincerely unaware of her false and irrational beliefs. Her cognitive inability to grasp the situation is evidence of her decisional incapacity to make an autonomous decision. Caregivers sometime interpret denial as malingering and fail to recognize genuine psychiatric causes of denial.
Delirium is a pathological disturbance of consciousness characterized by disorientation to place and persons, distraction, disorganized thinking, inattentiveness or hypervigilance, agitation or lethargy, and sometimes by perceptual disturbances, such as hallucinations. Delirium is usually of abrupt onset and variable in manifestation. It often accompanies trauma or 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 he may appear clear and oriented but later in the day he may be assessed as confused.
CASE. Mr. Care, with multiple sclerosis (MS), is now hospitalized. In the morning, he can converse 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 nasogastric tube, 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 and act upon them. Still, if time permits, supportive evidence about those preferences should be sought before they are taken as definitive.
2.2.6 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 a recommended intervention, based on a personal evaluation that the risks and burdens of the intervention are unacceptable. The prospective benefit may not fit into the patient’s personal values and beliefs. 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 a patient’s beliefs and values challenge the physician’s recommendations.
2.2.7 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 a 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. Genuine commitment by physicians and family to the autonomy of the patient must tolerate an outcome that they see as extremely unwise.
B. Refusal of treatment by persons competent, informed patients. Resolving Ethical Dilemmas: A Guide for Clinicians. 5th ed. Philadelphia, PA: Lippincott Williams & Wilkins, 2013: chap 11.
CASE I. Elizabeth Bouvia, a 28-year-old woman, is quadriplegic due to cerebral palsy. She also has 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.” Bouvia v. Superior Court, California Court of Appeals, 1986.
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 five 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 six 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 Section 2.1.7, Case II, has cardiac symptoms that indicate the need for coronary angiography and probably surgical repair. 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. Ms. T.O. makes a competent decision to refuse 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 III, 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. An early follow-up visit should be scheduled for both 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 Section 2.2.4, Case I) 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 was advised that her objections were influenced by metabolic encephalopathy. After 24 hours, she awakens, talks appropriately with her family, 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 doctor’s comments. She declines again 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; 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.
2.2.8 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, and even obligatory, to them, with a patient’s preference for a different course of action. We here offer some general comments about this issue.
Some clinicians who encounter unfamiliar beliefs may assume that anyone who holds them must suffer from impaired capacity. No reasonable person, they believe, could refuse needed care for reasons such as the patient offers. 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.
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.
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 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 die during 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 routine for him, but, for my Dad, it was like a death sentence.”
AM. Religious and cultural perspectives in bioethics. The Cambridge Textbook of Bioethics. Cambridge: Cambridge University Press; 2008: sec IX: 379–444.
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 going to occur. In Navajo culture, persons are accustomed to speak always in positive terms 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 Topic Four, where we treat the role of the family (see Section 4.2.2).
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 devout 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 those not sharing their belief may consider it irrational, adherence to a religious belief is not evidence of decisional incapacity.
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. Witnesses’ refusal of transfusion includes whole blood, packed red blood cells, white blood cells, plasma, and platelets. Beliefs diverge about other aspects of blood use. This faith may forbid autotransfusion. It may allow administration of blood fractions, such as immune globulin, clotting factors, albumin, and erythropoietin. Some Witnesses may accept dialysis, and circulatory bypass techniques are permitted if these procedures do not use blood products from others. It is advisable for the physician to determine from the patient exactly the content of his or her beliefs, 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.
D. Jehovah’s Witness bioethics. In: Singer
AM, eds. The Cambridge Textbook of Bioethics. 1st ed. New York, NY: Cambridge University Press; 2008: chap 51.
4. Jehovah’s Witnesses refusal of blood transfusion differs in a significant way from refusal of all medical treatments. The Jehovah’s Witnesses acknowledge the reality of their illness and desire to be cured or cared for; they simply reject one modality of care.
5. 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.
6. 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:
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 Section 2.5.6).
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 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.