Chapter 1 Physicians, Patients, and Others: Autonomy, Truth Telling, and Confidentiality

1. Chapter 1 Physicians, Patients, and Others: Autonomy, Truth Telling, and Confidentiality

2. Four questions This chapter explores the relationship between patient autonomy and medical paternalism with regard to four medical ethical questions: • To what extent is it morally necessary to secure a patient’s consent for medical treatment? • Is it morally acceptable to deceive a patient if doing so is a means of protecting or improving the patient’s health? • What information can medical professionally legitimately share with others in caring for a patient? What are the moral limits of patient confidentiality? • Who has the moral right to make treatment decisions on behalf children? Parents, medical professionals, the state?

3. Definitions of autonomy and paternalism We act autonomously when our actions are the outcome of our deliberations and choices. Autonomy is violatedwhen: • we are coerced or threatened • our choices are based on misinformation supplied by others • our competence to make sound judgments is impaired. We value our autonomy so actions by others which violate it are (usually) morally objectionable. This is true where the violator tries to harm us or acts to promote his interests in disregard of ours. (For a discussion of the harm principle, see p. 903.)

4. Definitions of autonomy and paternalism • But what about instances where someone, either a person or the state, violates our autonomy “for our own good”? In these instances the violator is behaving paternalistically. • Is paternalism ever justified? Is it ever morally OK for someone else to override our autonomy to protect or promote our welfare? • Children and drunkards are examples of an obvious, yes, answer. Who would think to let a five year old to play with a loaded pistol just because the child wanted to? Who would let a friend “drink and drive?”

5. Definitions of autonomy and paternalism • Yet, where do we draw the line? A friend wants to skydive and perhaps take his ten year old son with him. It’s risky and he’s doing it just for fun. Should you try to intervene? Should there be a law against it? • These kinds of questions becomes especially acute in medical contexts where our health or life may be at stake. There can be a moral tension between autonomy and paternalism in these cases. This chapter illustrates and explores this tension, as well as the relevance of the harm principle.

6. Immunizations and autism:An example of autonomy and paternalism in conflict The tension between autonomy and paternalism is illustrated by recent controversies surrounding the suggestion that childhood vaccinations increase the likelihood of autism in children who receive them.

7. Facts about autism • Autism today is considered as part of a range of developmental disabilities called Autism spectrum disorders (ASDs). • ASDs include difficulties in language use and in communicating and interacting with others. The behavioral symptoms typically appear before three. • The Centers for Disease Control estimates that an average of 1 out of every 110 children has autism. • Males are three to four times more likely than females to be autistic, affects all races, in all parts of the world. • A sibling of someone with autism is 25 times more likely to be autistic than someone in the general population

8. Facts about autism • About 41% of children with ASD disorders have an intellectual disability (IQ of 70 or lower). • About 40% of children with ASD do not talk at all. • Autism is a lifelong disorder that cannot be “cured.” • Lifetime cost to care for an autistic person is $3.2 million. • The causes of autism are unknown but it almost certainly has a genetic component.

9. Reasons for suspecting an immunization-autism link • The incidence of autism seems to be going up. • Autistic symptoms start showing up around the time vaccinations are typically given. • Vaccines, up until around 2001 were preserved by using Thimerosal, which contains mercury a known neurotoxin. • A study by pediatrician Andrew Wakefield and others, which appeared in 1998 in the reputable medical journal The Lancet was widely interpreted as showing that childhood vaccinations could cause autism.

10. Reaction to claimed link • Many parents and groups were persuaded by these arguments and began arguing against legally mandatory immunization. • Several reputable medical bodies examined the arguments of (a) – (d) and found them without merit. They reaffirmed the standard view that childhood vaccinations are low risk and should be continued as a matter of law. • Despite these findings a number of parents continue to remain skeptical and in some cases refuse to immunize their children. • How should we think about this continuing challenge to medical authority?

11. Conflict between paternalism and autonomy • In the US and some other countries, the law requires that children be immunized against a range of diseases. This requirement represents state paternalism: parents are legally obligated to have their children immunized for the children’s own good (except in rare cases). • Because children must be immunized by law, it is not up to the parents to make the decision whether to immunize or not. This fact represents a restriction on parents’ autonomy to raise their children as they see fit.

12. Support for paternalism • In general we think that how children are to be reared should be left up to the parents but in certain cases where children’s welfare is at stake, making immunization legally mandatory seems justified. • Most parents, most of the time, support and abide by these requirements, that is, they accept that restrictions on their autonomy is reasonable.

13. Support for paternalism •  This perspective was given Supreme Court sanction in 1905, in the case of Jacobson vs. Massachusetts. • The Court addressed the issue of whether the state’s requirement that everyone be vaccinated for smallpox violated Jacobson’s “inherent right” to “care for his own body and health in such way as seems to him best.” • The Court pointed out that, in general, the state has the right to impose burdens and restraints on citizens for the good of all.

14. Support for paternalism • But, in the vaccination-autism controversy, some parents are deeply suspicious of the medical establishment’s claim that there is no link between vaccination and autism. • Some of them feel that there is a legitimate scientific perspective which supports the existence of such a link. • Why should parents have to accept the scientific views of mainstream medical organizations instead of this alternative analysis?

15. Support for paternalism • The opinion in Jacobson vs. Massachusetts addressed this issue as well. • The Court said even if some scientists questioned the efficacy of vaccination, the legislature had the right to adopt and enforce one of the competing scientific views.

16. Section 1: Consent and medical treatment • One area where autonomy and paternalism can clash concerns the conditions under which it is morally legitimate for a medical professional to treat a patient. • Of course, much of the time, patients come to doctors and request treatment but in cases such as accident or medical episodes patients may be brought to hospitals where, health care professionals, acting on their mission to save lives and improve health, treat a patient even if the patient has not consented to the treatment. • Is this morally legitimate?

17. Consent and medical treatment • In the US, prior to the 1970s, the common attitude is that paternalism is of course justified and the patient’s protests could reasonably be ignored because it was for the patient’s own good. • But that attitude has been changing partly because, in part, of high profile cases such as that of Dax Cowart (discussed in a reading in this section) • Today, consent of the patient seems essential. There is widening consensus that part of a medical professional’s responsibility includes a serious respect for the patient’s autonomy, expressed, in particular, by securing the patient’s consent for treatment.

18. Consent But true consent is a complicated notion involving at least the following: (1) Being competent to understand what they are told about their condition and capable of exercising judgment; (2) Being provided with relevant information about their illness and the proposed treatment for it in an understandable form and allowed the opportunity to ask questions;

19. Consent (3) given information about alternative treatments, including no treatment at all; (4) allowed the freedom to make a decision about their treatment without coercion. The reading in this section explore these complications among other topics.

20. Reading: Paternalism and Partial Autonomy Onora O’Neill • O’Neill focuses on the consent aspect of autonomy and argues that securing it requires more than having a patient sign a consent form, which may satisfy legal requirements but which may not express the genuine consent required by a serious respect for patient autonomy.

21. Reading: Paternalism and Partial Autonomy Onora O’Neill • O’Neill argues that traditional views of autonomy in medical ethics fail to recognize that most patients fall short in varying degrees of the ideal rationality assumed as the basis of genuinely informed consent. • To ensure true consent, physicians must go out of their way to ensure that patients understand the basics of their diagnosis and the proposed treatment, then make sure that they are secure enough to refuse the treatment or insist that it be changed.

22. Reading: Paternalism Gerald Dworkin • Gerald Dworkin attempts to show that even if we place an absolute value on individual choice, a variety of paternalistic policies can still • be justified. • In consenting to a system of representative government, we understand that it may act to safeguard our interests in certain ways. • But, Dworkin asks, what are the “kinds of conditions which make it plausible to suppose that rational men could reach agreement to limit their liberty even when other men’s interests are not affected?”

23. Reading: Paternalism Gerald Dworkin • Dworkin suggests that such conditions are satisfied in cases in which there is a “good” such as health involved—one that everybody needs to pursue other goods. • Rational people would agree that attaining such a good should be promoted by the government even when individuals don’t recognize it as a good at a particular time. • There is a sense, Dworkin argues, in which we are not really imposing such a good on people. What we are really saying is that if everyone knew the facts and assessed them properly, this is what they would choose.

24. Reading: Paternalism Gerald Dworkin • Also, we are sometimes influenced by immediate alternatives that look more attractive, or we are careless or depressed and so do not act for what we acknowledge as a good. • It is plausible, Dworkin suggests, that rational people would grant to a legislature the right to impose such restrictions on their conduct But the government has to demonstrate the exact nature of the harmful effects to be avoided. • Also, if there is an alternative way of accomplishing the end without restricting liberty, then the society should adopt it.

25. Reading: Confronting Death: Who Chooses, Who Controls? A DialogueDax Cowart and Robert Burt • Dax Cowart and Robert Burt agree that the principle of autonomy gives competent patients the right to refuse or discontinue medical treatment. • Burt suggests, however, that the physician should stop treatment only after a time during which the physician explores the patient’s reasons for refusing it and perhaps even argues with him to get him to set aside any preconceptions that may be influencing his decision. • Cowart does not reject Burt’s general views, but he is inclined to see the need for physicians to accept patients’ decisions relatively quickly.

26. Reading: Confronting Death: Who Chooses, Who Controls? A DialogueDax Cowart and Robert Burt • Mentioning his own experiences, Cowart stresses that severe pain permits little delay and that patients should not be forced to endure what they do not wish to endure. That they may later be glad to be alive does not justify violating their autonomy and forcing treatment on them. • For Cowart, respecting autonomy means recognizing that a patient is free to make wrong choices as well as right ones.

27. Section 2: Truth telling and deception • What we know or think we know can affect our attitudes and behavior. If we believe that we are poor test takers we may decide against going to college. • This link between belief and attitude and action is well-recognized by health care providers. • How a patient views his physical well-being and types of medical treatment can influence his health and his willingness to follow medical advice.

28. Section 2: Truth telling and deception • For this reason, a physician may feel that he needs to control what information a patient is or is not told about his physical condition or about the nature of treatments for the patient’s own good. This may involve outright lying or deception of one sort or another. • Adopting this paternalistic stance is a violation of the patient’s autonomy because it prevents him from making a fully informed decision about what he should do. • Is such deception ever justified?

29. Reading: On Telling Patients the TruthMack Lipkin • Mack Lipkin defends the paternalistic practice of withholding information from patients because it is practical impossible to tell them “the whole truth.” • They usually simply do not possess enough information about how their bodies work to understand the nature of their disease, and their understanding oftheterms used by a physician is likely to be quite different from the meanings intended.

30. Reading: On Telling Patients the TruthMack Lipkin • Besides, some patients do not wish to be told the truth about their illness. •  Whether it is a matter of telling the truth or of deceiving patients by giving them placebos, the crucial question, according to Lipkin, is “whether the deception was intended to benefit the patient or the doctor.”

31. Reading: The End of Therapeutic Privilege?Nicole Sirotin and Bernard Lo • The authors endorse new AMA guidelines that narrow a physician’s “therapeutic privilege” to withhold medical information from a patient to prevent potential harm. • They maintain, however, that physicians need additional guidance in specific cases and present two cases to illustrate their claim. In one case, cancer is unexpectedly discovered, and in the other, a patient’s HIV status is revealed by an mistakenly ordered test.

32. Reading: The End of Therapeutic Privilege?Nicole Sirotin and Bernard Lo • The authors suggest that in difficult cases, physicians would find it useful to organize their approach around the following questions: (a) Whether to disclose information? (b)Who should disclose it? (c) Where and when to disclose it? (d) What to say to the patient? • These practical questions should allow physicians to build on the trust and communication that are basic to the doctor-patient relationship.

33. Section 3: Confidentiality • The Hippocratic Oath famously says “Whatever I see or hear, professionally or privately, which ought not be divulged, I will keep it secret and tell no one”. The doctor must maintain patient confidentiality. • But why? Part of the answer is that physicians need to have information of an intimate and highly personal sort to make diagnoses and prescribe therapies. Patients might not be willing to confide such information if they knew physicians will not keep it confidential. Treatment might consequently suffer. • Additionally, since psychological factors play a role in medical therapy, the chances of success in medical treatment are improved when patients can place trust and confidence in their physicians.

34. Section 3: Confidentiality • But it has long been recognized that there are occasions when it is legitimate to breach confidentiality. • One recognized reason is that disclosing information about a patient might be essential to protecting others from harm (“the harm principle”). • A familiar example is of an AIDS patient who has slept with others. In that case, it becomes an obligation of the physician to have the partners of the patient contacted to inform them of their potential exposure to the disease.

35. Reading: Confidentiality in Medicine – A Decrepit ConceptMark Siegler • Mark Siegler calls attention to the impossibility of preserving the confidentiality traditionally associated with the physician–patient relationship. • In the modern hospital, a great many people have legitimate access to a patient’s chart and so to all medical, social, and financial information the patient has provided.

36. Reading: Confidentiality in Medicine – A Decrepit ConceptMark Siegler • Yet the loss of confidentiality is a threat to good medical care. Confidentiality protects a patient at a time of vulnerability and promotes the trust that is necessary for effective diagnosis and treatment. • Siegler concludes by suggesting some possible solutions for preserving confidentiality while meeting the needs of others to know certain things about the patient.

37. Reading: Supreme Court of California: Decision in the Tarasoff Case • This ruling, of particular concern to psychiatrists and psychotherapists, declared that therapists at the student health center of the University of California, Berkeley, were negligent in their duty to warn Tatiana Tarasoff that ProsenjitPoddar, one of their patients, had threatened her life. • Although the therapists reported the threat to the police, Tarasoff herself was not warned, and she was murdered by Poddar.

38. Reading: Supreme Court of California: Decision in the Tarasoff Case • The ruling and dissenting opinions in this case address the issue of balancing the state’s interest in protecting its citizens from injury against the interest of patients and therapists in preserving confidentiality.

39. Reading: Supreme Court of California: Decision in the Tarasoff Case More particularly: • Does a therapist have a duty to warn at all? • Should a patient be informed that not everything he tells his therapist will be held in confidence? • Is a therapist obliged to seek a court order committing a patient involuntarily to an institution if the patient poses a threat the therapist deems to be seriously motivated?

40. Reading: Supreme Court of California: Decision in the Tarasoff Case • The majority opinion argues that a therapist whose patient poses a serious danger to someone has a legal obligation to use “reasonable care” to protect the intended victim. This duty may include warning the possible victim, even involuntarily institutionalizing the patient. • The dissenting opinion, Justice William Clark contended that the law should not interfere with the confidentiality between therapist and because: (1) Without the guarantee of confidentiality, those needing treatment may not seek it; (2) violence may increase, because those needing treatment were deterred from getting it; (3) therapists, to protect their interest, will seek more involuntary commitments, thus violating the rights of their patients and underminingthetrust needed for effective treatment.

41. Section 4: Children and consent • As noted earlier, consenting to treatment has been recognized as a limit on what a physician can do, in particular, in cases where a patient wishes to refuse a treatment which the physician thinks is medically justified to help the patient. • But what about the case where the patient is a child? The usual assumption is that a child is not competent to make a decision about what’s needed to protect or promote its welfare, so it cannot consent to what may be necessary to for its health.

42. Section 4: Children and consent • Instead, someone else (parents, another person, the state) must serve as proxy and make that judgment for the child. In fact, depending on the specifics, the state may require that children receive standard medical treatment in certain circumstances if parents fail to act. • When it comes to care of a child, most of the time most parents or guardians will follow the recommendation of medical professionals.

43. Section 4: Children and consent • But what should be done if parents fail to do so because, for example, the recommendations are inconsistent with their religious convictions, which is the case for Christian Scientists and Jehovah Witnesses? • Here we have a conflict between state paternalism and religious freedom, one aspect of parental autonomy.

44. Reading: Parental Refusals of Medical Treatment: The Harm Principle as Threshold for State InterventionDouglas S. Diekema • The author argues that the “best interest” standard is not adequate for making decisions about the welfare of a child when state intervention is required because of parental failure to see to a child’s welfare. Nor does the best-interest standard reflect the standard used in practice. • The harm principle, Diekema claims, “provides a more appropriate standard for court intervention.” He offers a set of criteria for deciding when the state should intervene on behalf of a child and cases to illustrating the criteria.

45. Reading: Do Parents Have the Right to Refuse Standard Treatment for Their Child with Favorable-Prognosis Cancer?Jeffrey D. Hord et al. • The authors present the case of a 7-year-old boy with a form of leukemia that responds well to standard treatment and has an 85% chance of long-term survival. • The boy’s leukemia went into remission after the first round of chemotherapy, but his parents decided to discontinue the chemotherapy in favor of a holistic treatment that would not damage his immune system.

46. Reading: Do Parents Have the Right to Refuse Standard Treatment for Their Child with Favorable-Prognosis Cancer?Jeffrey D. Hord et al. • The hospital went to court seeking an order to continue the child’s chemotherapy, but the judge ruled in favor of the patents’ right to make medical decisions for their child. • The authors outline the ethical principles of autonomy, beneficence, non-maleficence, and justice as they relate to the case. • They emphasize the difficulty of finding a threshold of therapeutic success at which treatment should be given to children contrary to the wishes of their parents.

47. Reading: The Dilemma of Jehovah’s Witness Children Who Need Blood to SurviveAnita Catlin • Catlin presents the case of a child given a blood transfusion even though his parents, both Jehovah’s Witnesses, refused to consent to the procedure and tried to prevent it on the grounds that transfusions are forbidden by the Bible and if given would produce spiritual harm to the child. • Catlin believes it is unacceptable to try to convince Jehovah’s Witness parents to give up their beliefs and instead argues that alternative treatments to transfusions should be seriously considered as a way of accommodating the convictions involved.

48. Reading: Reply to Anita CatlinEugene Rosam • Rosam points out that Jehovah’s Witness parents do not believe that children should be allowed to die and are not against medical treatment for their children, just not treatment that involves blood transfusion. • The author claims that we must recognize that a transfusion has the potential to cause medical harm, not just medical benefit.

49. Reading: Reply to Anita CatlinEugene Rosam • Rosam notes that some laws and recent court decisions do not require that a child receive the “best” treatment, but only a treatment that is “adequate” or “reasonable.” • Thus, if a treatment does not involve the use of blood, even if some do not consider it the best treatment, there are no grounds for interfering with parental decision making. • Rosam thinks it is unacceptable to try to convince Jehovah’s Witness parents to give up their beliefs.