Chapter 26: Ethics

A 54-year-old married female, Charlene, has insulin-dependent diabetes and has seen you for her care for the last 7 years. In the last year, she has developed diabetic retinopathy and neuropathy. To your great frustration, Charlene continues to resist the recommended lifestyle changes required to control her diabetes.

She is a casual, friendly woman known as the "candy lady" in her neighborhood where she lives with her husband of 30 years. She loves children and volunteers at the local elementary school, where she is well known for a quick smile, a reassuring hug, and a piece of candy in her large, full pockets. In fact, she is noted during most of her appointments to be munching on M&M's—her favorite candy. She has had dietary consults and many education-oriented doctor appointments but says, "I know I shouldn't eat the way I do, but I just don't have the heart to change who I am, even if it does help my eyes and legs. Who I am is about what I eat and do."

You wonder about Charlene's capacity for decision-making, given her frank noncompliance with care, even in the setting of serious complications from her diabetes.

Question 26.1.1 All of the following variables are necessary in decision-making capacity (DMC) EXCEPT:

A) Ability to communicate a choice.

B) Voluntary choice.

C) Understanding of the variables involved in the decision.

D) Ability to appreciate the personal impact of choices.

E) Family agreement that the patient is competent.

Answer 26.1.1 The correct answer is "E." All of the other options are considered important for determining DMC. Certainly family concerns need to be addressed but family agreement has nothing to do with determining a patient's competence. One additional necessary element for DMC is the ability to reason about the options in the setting of personal values.

Question 26.1.2 What is the most relevant piece of information in Charlene's account that suggests that her capacity is intact?

A) Therapeutic alliance with you despite noncompliance with treatment recommendations.

B) Integration into community relationships, including a stable marriage and responsibilities in the elementary school.

C) Expression of placing perceived self-identity as a higher priority than control of diabetes and its complications.

D) Awareness that her dietary choices are associated with symptoms of eye disease and neuropathy.

E) Flagrant disregard for medical recommendations by eating candy while at her appointment.

Answer 26.1.2 The correct answer is "C." While several of these variables are relevant in assessing DMC, the capacity for DMC is typically thought of in a stepwise fashion, starting with (1) ability to communicate a choice, then (2) basic understanding of the variables, then (3) ability to appreciate the personal impact of choices, and finally (4) the ability to reason about the options while considering personal values. This last step is not only the most complicated but also the most strongly indicative that DMC is intact.

Question 26.1.3 Which of the following is TRUE about DMC?

A) Patients who have been found legally incompetent do not have DMC.

B) A patient's DMC may vary according to the circumstances of the situation.

C) A minor's DMC is not clinically relevant since there is a surrogate who bears the responsibility for decision-making.

D) DMC should not be evaluated in cases in which the patient makes an unconventional choice.

E) Patients with psychiatric disease, who are committed to a treatment facility, do not have DMC.

Answer 26.1.3 The correct answer is "B." DMC is not an all-or-none distinction but can vary widely from case to case or setting to setting. Even patients who have been declared legally incompetent or who have been legally and involuntarily committed may still have a measure of DMC. Moral theory typically urges clinicians to consider the wishes and reasoning of their patients as morally and clinically relevant, regardless of the placement of a legal guardian or the state as a surrogate decision maker. DMC may ultimately be overridden in certain kinds of legal circumstances, but it should not be done lightly as it suggests a fundamental denial of patient autonomy. As a result, many patients with psychiatric illness still have the right to make choices, even with diagnoses such as schizophrenia. Making unconventional choices can sometimes be a marker that DMC is not intact but does not automatically lead one to this conclusion (e.g., Jehovah Witness and blood transfusions; refusing blood is unconventional but DMC may be intact). Finally, though minors technically cannot make many healthcare choices, their wishes should be taken into consideration as they are often able to articulate a preference. In minors, this is termed "assent," rather than consent. Children may not be able to understand enough to consent on their own but they can "assent" (or protest) a particular plan of treatment.

Charlene continues to have a slow decline over time but remains in good spirits despite the complications of her uncontrolled diabetes. One day her husband brings her to the emergency department. He had found her in the bathroom, unconscious, and called an ambulance. She has had a stroke and remains unresponsive, on ventilation in the ICU. Her prognosis is poor.

Question 26.1.4 What are appropriate considerations for making a treatment decision about end-of-life care for Charlene?

A) Oral statements to her husband about her end-of-life care.

B) Her husband's wishes for her care as designated proxy healthcare decision maker.

C) Written advance directives.

D) Oral statements to her physician about her end-of-life care.

E) All of the above.

Answer 26.1.4 The correct answer is "E." Written advance directives are considered the most binding, although all of these considerations are relevant in making end-of-life decisions.

Question 26.1.5 Which of the following statements can be used to describe medical futility?

A) No worthwhile goals of care can be achieved.

B) The likelihood of success is very small.

C) The patient's quality of life is unacceptable.

D) All of the above.

Answer 26.1.5 The correct answer is "D." All of the above meanings have been explicitly or implicitly drawn into discussions about medical futility. For this reason, many theorists have objected to the use of the term "futility" as a justification for decisions and urge clinicians to be precise about the concerns that arise in a given patient's clinical situation. Another definition of "futility" is trying to make it through this book without vast quantities of caffeine.

After discussion with her husband, you decide to discontinue ventilation. Charlene dies.

Question 26.1.6 This intervention is appropriately considered:

A) Active, nonvoluntary euthanasia.

B) Physician-assisted suicide.

C) Withholding medical intervention.

D) The principle of double effect.

E) Withdrawing medical intervention.

Answer 26.1.6 The correct answer is "E." While the answer might seem intuitive to you, many persons (including physicians) do not recognize the differences between these various interventions. Active euthanasia ("A") is when the physician both supplies the means of death and is the final human agent in the events leading to the patient's death (e.g., the physician administers the lethal drug). Whether or not active euthanasia is voluntary, involuntary or nonvoluntary depends on the DMC of the patient. Assisted suicide ("B") occurs when the physician provides the means of death but the patient carries out the act, such as taking an overdose of phenobarbital. Withholding medical intervention ("C") means not initiating care for a disease state such that the disease itself results in death (e.g., not placing a gastric tube for artificial feeding in a patient with end-stage dementia). Withdrawing medical intervention ("E") means discontinuing an intervention that has already been used, although the disease state itself results in death with the intervention's discontinuation. The principle of double effect ("D") is an ethical theory that suggests that if there is an unintended bad outcome (e.g., death) while pursuing an intended purpose (e.g., pain relief), there is diminished moral responsibility for the unintended outcome. This principle is sometimes used to justify the use of high-dose opiates or sedatives in patients with intractable pain, even when the unintended effect is respiratory depression and death.

Question 26.1.7 Which of the following is TRUE about the role of law in life-sustaining interventions?

A) Courts must be involved in decisions after a patient has been declared to not have capacity.

B) Life-sustaining treatment may be withheld only if patients are terminally ill or permanently unconscious.

C) Physicians may face criminal charges for providing appropriate palliative care and not treating the underlying disease.

D) The most prudent legal advice is to continue treatment in medically futile cases.

E) The law presents few barriers to physicians withholding life-sustaining interventions.

Answer 26.1.7 The correct answer is "E." Sometimes physicians inappropriately provide treatment to patients who have made their end-of-life choices clear and have stated that they do not want prolongation of life. Respecting the patient's prior wishes will not result in legal liability for the physician, but the converse is not true; one can be legally liable for treating a patient who does not want treatment (e.g., transfusing a Jehovah Witness patient who refused transfusion). "A" is incorrect. After a patient is declared to not have capacity the courts no longer need to be involved, as a legal surrogate is appointed by the court to make decisions for the patient. "B" is also incorrect as treatment may be withheld at any time at the request of a competent patient.

Objectives: Did you learn to…

• Evaluate a patient's DMC?

• Recognize how DMC may vary based on the patient and the clinical setting?

• Identify some ethical issues in end-of-life care?

• Describe medical futility and understand its importance in making ethical decisions?

You are seeing George, a 30-year-old, HIV-positive male, for routine care and to assess his HIV status. During your conversation, he mentions that he is in a new relationship—a relationship that he hopes will become long term. They use condoms "some of the time" but have unprotected sex on a regular basis when there is no condom available. When you ask him whether or not he has disclosed his HIV status to his partner, he states that he has not done so and will not do so because of the fear his partner will leave him. He also forbids you to contact his partner to notify her of his HIV status.

Your response in this situation is to:

A) Attempt to convince George to notify his partner of his HIV status.

B) Depending on your state, contact the health department and have them follow up on the patient's sexual contacts.

C) Contact the partner directly and let him/her know of George's HIV status.

D) Maintain strict confidentiality and do not warn George's partner nor report his HIV status regardless of the situation.

E) A, B, and C.

The correct answer is "E." "A" is clearly correct. Anything we can do to convince George that it is critical he notify his partner of his HIV status (short of coercion) should be done. "B" is correct but may vary by state. As of this writing, all 50 states and most territories have confidential, name-based reporting for HIV. However, patients can still be tested anonymously which precludes reporting and can circumvent reporting laws. For this same reason, "D" is incorrect. There are mandatory reporter laws on the books. "C" is also correct. Although this is somewhat controversial and there are conflicting duties (the patient's autonomy and confidentiality vs. the duty to warn the partner), we have a duty to protect the patient's partner. In cases of a direct threat to a known individual, we have a duty to warn the individual. A more clear-cut case would be if George were threatening to shoot his partner and storms out of the office with a gun. While this is a more immediate example, the same principle holds. Clearly, we must not take the breaking of patient confidentiality lightly. And, we must inform the patient of our course of action. You may want to set a time frame for George to notify his partner with the understanding that if he does not do so, you must.

Alternatively, if all we know is that George is HIV positive and have no knowledge of his partner(s), we cannot publicize George's HIV status in the local press in order to "protect the public." But if we have a specific name of an ongoing sexual partner, we have a duty to warn that individual which competes with our duty to maintain confidentiality with George.

Robert, a 27-year-old married nurse from your hospital, is referred to your emergency department for an urgent evaluation by his supervisor. In the past 2 weeks, he has been noted to be increasingly distressed while at work, with occasional tearfulness, distractibility, and irritability.

During the initial assessment, Robert reveals that there is a specific reason that he has been so preoccupied. He indicates that 2 weeks ago he was jailed for operating a vehicle while intoxicated and that he feels ashamed. He is afraid that his coworkers have read about it in the newspaper, although no one on his floor has indicated that this is the case. This is his first legal infraction of any kind and he describes it as humiliating.

On further questioning, Robert indicates that he uses alcohol regularly. While it has not overtly affected his work as far as he can tell, it has caused significant marital strife. He reports that his pattern is to stop by the bar on the way home from work to "relax and let go of the hospital stuff that I worry about." He typically drinks three beers and then drives home, where he continues to drink beer throughout the evening. He notes that his wife and kids complain that he is emotionally absent and even irritable with them, but he says that his family simply doesn't understand the stress of the workplace and his need to "forget about it for a few hours." He and his wife have started arguing lately about his alcohol use, especially since the driving charge. He takes special exception to her stating that he is an "alcoholic."

As you take the history, Robert begins to be more guarded in his responses and more restricted in his affect. Suddenly, he blurts out, "I don't think I'm an alcoholic, but I don't want you to put anything in my record about any of this stuff! And I want you to tell my supervisor that there are some personal problems going on at home and that I'll be fine in a few days."

Question 26.2.1 Which of the following statements is TRUE about your obligation with regard to documentation in the chart?

A) You are obligated to document the visit as it occurred so far as the medical facts are concerned, including the concern about alcohol abuse.

B) You can enter incorrect information into the chart in order to protect the patient.

C) You are under no obligation to document anything said and can withhold information from the chart at the patient's request.

D) Hospital administration or legal counsel should be involved if information is going to be purposefully left out of the chart.

E) You can lie in the medical record … we're pretty sure perjury, liable, and slander don't apply to doctors.

Answer 26.2.1 The correct answer is "A." The ethical principles of beneficence, nonmaleficence, and justice drive the decision here. A patient may legitimately ask for nonactive medical problems (e.g., distant history of sexual abuse) to be withheld from current documentation of an active problem (e.g., allergic rhinitis—by the way, kudos on your detailed history-taking). However, a patient cannot legitimately ask to have information withheld from the record if that information is pertinent to an ongoing condition currently being evaluated and treated. In this case, Robert is receiving care simply by virtue of being seen in the emergency department and disclosing the chief complaint and its associated variables. It is important for you to be forthcoming in explaining why the information may not be withheld from the medical record and also in reassuring him that nonrelevant medical information will be omitted from the record if he feels that this is necessary. For example, the specifics of the argument with a wife need not be detailed beyond the comment that there is nonviolent marital conflict over the patient's alcohol use—important because it supports an alcohol abuse disorder. Furthermore, many institutions have specific policies on managing sensitive medical information and there may be a formal mechanism for increasing the security of the patient's medical record.

Question 26.2.2 Why is protection of confidentiality important in medical practice?

A) It shows respect for patient autonomy.

B) It helps prevent stigmatization and discrimination against patients based on private medical issues.

C) It helps solidify trust within the physician–patient relationship.

D) It helps establish a boundary between the physician–patient relationship and the rest of the medical system.

E) All of the above.

Answer 26.2.2 The correct answer is "E." The physician–patient relationship is a long-honored tradition in medicine that is increasingly fragile in a medical system with numerous competing obligations. Nevertheless, it is prudent to remember the aspect of the Hippocratic Oath, which states, "What I may see or hear in the course of the treatment … which on no account one must spread abroad, I will keep to myself, holding such things shameful to be spoken about." This is not only important to the tradition of medicine itself but also to the physician–patient relationship. There is no doubt that loss of confidentiality may cause harm to the patient when others are in possession of confidential medical information. Such harms may be as overt as denying medical coverage for certain genetic conditions or as subtle as devaluing a person seen waiting to see the psychiatrist.

Question 26.2.3 Which of the following are legally protected exceptions to the rule of maintaining patient confidentiality?

A) Reporting tuberculosis to public officials without patient consent.

B) Warning a third party at risk of imminent and serious bodily harm from the patient without patient consent.

C) Reporting a patient's alcohol abuse to a work supervisor without the patient's consent.

D) A and B.

E) All of the above.

Answer 26.2.3 The correct answer is "D." Under current national and state laws, physicians are mandatory reporters of some infectious diseases and of intent to harm another. In most other cases, provision of medical information without the patient's written consent is not legally protected, although there may be cases in which it is felt to be morally justifiable. Physicians need to weigh violations of patient confidentiality very carefully, even when legally sanctioned. Ethicists typically agree that if a physician is going to compromise a patient's confidentiality for an overwhelming moral obligation that, in respect for patient autonomy, the patient needs to be notified. In many situations in which a physician hopes to communicate confidential information to a third party even when the patient is unwilling, a process of education and negotiation with the patient occurs such that respect for autonomy is acknowledged while simultaneously making the patient aware of competing moral obligations.

Question 26.2.4 Which of the following interferes with protecting patient confidentiality in the medical structure?

A) Involvement of managed care organizations in patient care and medical payments.

B) Electronic records and transmissions.

C) Group practices and/or teaching hospitals with multiple care providers.

D) A and B.

E) All of the above.

Answer 26.2.4 The correct answer is "E." While individual physicians and patients continue to prize the tradition of respect for confidentiality, the multiple players in health care make it nearly impossible to restrict all information to the dyad of physician and patient. Insurance companies will not provide payment without, at least, information about the diagnosis, and notably, insurance companies are not legally bound by the same codes of conduct that apply to physicians regarding patient privacy. Electronic records and transmissions by e-mail, cellular phones, faxes, and other means are much more easily accessed by the curious or unintended recipients who have no reason to have confidential information. Open waiting rooms and multiple providers of care mean that larger and larger numbers of the community are aware that a patient is being seen in certain clinics for certain purposes. While patient records are not often considered a confidentiality issue, the reality is that once information is in written form, it is more difficult to control who might, either now or in the future, have access to the details of the report. For this reason, some physicians try to err on documenting only that which is considered absolutely necessary to patient care, although the distinction between the "absolutely necessary" and unnecessary can be a difficult line to draw in the sand, especially without the ability to appreciate how multiple variables may play out in the patient's future medical care.

Back to the patient at hand … Robert is asking you to be deliberately deceptive with the supervisor. You disagree with this.

Question 26.2.5 Which of the following is FALSE?

A) Trust in the physician–patient relationship depends on allowing the patient to make such a directive about communication with outside persons.

B) A physician who establishes a precedent for deception may be expected to practice deception in a future situation in which the harms greatly outweigh the benefits.

C) A physician who deceives may undermine general trust in the profession.

D) All of the above.

Answer 26.2.5 The correct answer is "A." Another way of phrasing the question is, "What drives a physician to be honest even when what the patient really wants is not honesty?" Will the patient trust you more if you are deceptive for him? Will this help him (aside from allowing him to keep his job)?

The physician–patient relationship is generally not considered an adequate reason to lie to a third party about the nature of a patient's illness and treatment. There has been concern that a physician who deceives a third party, even in the immediate interest of the patient's confidentiality or other concerns, establishes himself or herself as a physician who may not be trustworthy in other matters. A patient may not consider this at the time a deception is requested. These kinds of ripple effects from the decisions of an individual physician can affect the profession in general, ultimately producing fears that physicians will take the self-serving path rather than the higher moral ground.

You tell Robert that he has alcohol dependence and then provide education about the diagnosis and treatment options. You recommend outpatient treatment in Alcoholics Anonymous (AA) and a chemical dependency program. Robert agrees, more for the sake of his family stability rather than because of any true insight into the severity of his problem. You then arrange for follow-up with one of your partners (you've been selected as a contestant on the next Survivor and get to escape to a tropical island).

At the next appointment, Robert meets his new physician, Dr. Pincus. At this appointment, Robert indicates that he did attend two AA meetings but was very uncomfortable with the aspect of the 12-step program that requires acknowledging a "higher power." Robert indicates that he is an atheist and secular humanist, believing that the locus of self-control comes from within the individual human spirit. He has refused to continue in AA due to his rejection of its theistic foundation. He has had no further legal problems and reports that work is still going fine, with diminished irritability once he resolved in his mind that his coworkers were unaware of his previous driving violation. However, he continues to drink six to nine alcoholic beverages per night and admits that he occasionally needs a shot of whisky in the morning to "make sure I don't lose it with all the work stress" (this is where his self-control theory really comes together). He also works a night shift about once per week and does use approximately the same amount of alcohol before beginning the night shift, although he denies being intoxicated while on the job on these nights ("six beers just get me started"). He doesn't think this is a problem because "things are quiet at night and everyone just helps each other keep the patients comfortable." He reports that his family is satisfied with the decrease in consumption and that he considers the matter of alcohol abuse resolved.

Dr. Pincus has had her own problems with alcohol in the past. She has had a rocky course over the past many years but found AA to be very helpful. She has become very active in her Jewish synagogue and community, where she receives support and is accountable to her friends. Her own alcohol history has been marked by difficulty with alcohol bingeing, such that when she starts to drink, she drinks to intoxication. Only with aggressive honesty at a professional-group AA, as well as a substance abuse protocol through the state board of medical examiners, does she feel that she's been able to remain completely abstinent for the last 4 years.

Dr. Pincus is considering revealing to Robert some of her own struggles as a health-care professional with a substance abuse disorder. She believes that this will help him reevaluate the role of AA in sobriety and the importance of very tight control of alcohol consumption to prevent relapsing illness.

Question 26.2.6 Self-disclosure is best described as involving the ethical issues of:

A) Deception and nondisclosure.

B) Privacy and boundaries.

C) Informed consent.

D) Impaired colleagues.

E) Autonomy.

Answer 26.2.6 The correct answer is "B." There are explicit and implicit boundaries that exist between a physician's private experiences and the physician–patient relationship. One of these boundaries has to do with preventing physician needs and private matters from encroaching into the visit in a way that is not therapeutic to the patient and does not respect the physician's boundaries. While it would appear that Dr. Pincus has therapeutic reasons—for Robert, not for herself—for crossing the boundary of self-disclosure, both physician motivation for self-disclosure and the immediate and potential effects of the self-disclosure need to be weighed very seriously before private matters are revealed. If there is even a potential of harm, crossing the boundary in this way should be considered a violation of professional norms.

Question 26.2.7 How could Dr. Pincus appropriately respond to Robert's refusal to participate in AA on the basis of his religious impulse?

A) "AA is still shown the best intervention for preventing relapsing alcohol use. I hope you can go and get something out of it without acknowledging your acceptance of the 'higher power' explicitly."

B) "AA has important group support from others who understand how difficult it is to stop using alcohol. It is not meant to be religious, but rather a community of care."

C) "I have found both AA and a theistic world-view to be very helpful in understanding my own powerlessness to control some of my behaviors. Would it be helpful to you to hear more about this?"

D) "I understand how the religious aspect of AA is inconsistent with your own philosophy. Would you be willing to investigate non-religious group meetings for alcohol abusers?"

Answer 26.2.7 The correct answer is "D." AA is an example of a prescribed treatment that involves an active theological component. AA's first step involves acknowledgment of a higher power, traditionally invoking a specific monotheistic conception of the divine as a necessity to surrendering the illusion of control. In the interest of respecting a patient's religious rights in a diverse community, and of optimizing treatment options, it would be disrespectful and ineffective to have the patient participate in AA, while ignoring the first step of the program and the foundational philosophy of AA. While there are fewer studies about the efficacy of nonreligious alcohol treatment groups, it is appropriate to respect Robert's beliefs by investigating nonreligious alternatives. As to option "A," the Cochrane database concludes, "No experimental studies unequivocally demonstrated the effectiveness of AA."

Whether or not self-disclosure of one's own religious beliefs is appropriate is an important question. As mentioned in the discussion in the question above, it is very important for the physician to measure the intent of the disclosure. Also, physicians need to be exquisitely sensitive to the power differential that exists between a physician and a patient such that strong individual viewpoints might become threatening or coercive in the physician–patient relationship. In certain religious traditions, sharing one's faith is an important step, demonstrating courage and integrity; nevertheless, physicians should be strongly cautioned to pay heed to the virtue of practical wisdom and the unique circumstances of the medical relationship that makes proselytizing most often inappropriate. A better strategy, if a physician feels that a patient might be seeking additional spiritual or philosophical direction, is to ask open-ended questions and then make an appropriate referral to pastoral care or a spiritual counselor who will be sensitive to the issues the patient has raised as relevant.

Question 26.2.8 Which of the following is true about intervening with an "impaired colleague," like Robert?

A) Impairment should be reported only to a state licensing board if the colleague's patients are placed at known and documentable risk.

B) Because alcohol abuse is a confidential matter, it is inappropriate for a treating physician to report a colleague's impairment to a licensing board.

C) Removing a colleague from direct patient care and increasing supervision during patient care are reasonable first-step interventions for a colleague who is actively engaged in substance treatment (e.g., a report has already been made).

D) It is preferable to contact a state licensing board directly as opposed to discussing the matter with the patient or institutional administration. This protects both the reporter and the colleague from unnecessary negative repercussions.

Answer 26.2.8 The correct answer is "C." Legal statutes on reporting impaired colleagues vary from state to state, with some state laws making physicians mandatory reporters of impaired physician colleagues, while others simply recommend reporting. Furthermore, state laws are even less prescriptive with regard to non-physician health professionals with impairments. Any impairment should be treated seriously, preferably with support from the institution's administration. It is imperative to protect patients from harm. While reporting the impaired colleague may result in anger and disappointment from the colleague or even supervisors who are reluctant to tackle such a difficult question, physicians should consider the needs of vulnerable patients and the patients' rights to adequate care.

Confidentiality adds an additional ethical dimension when an impaired colleague reveals his or her impairment to his treating physician. In an effort to respect patient autonomy, physicians will often urge impaired colleagues to report themselves as well as voluntarily engage in treatment protocols. Many states have less-restrictive policies for treatment and monitoring for impaired colleagues who self-report. If a physician intends to report her patient's impairment without the consent of the patient, the physician is obligated to be truthful with the colleague about her intentions and rationale for reporting.

Question 26.2.9 A colleague may be impaired in her practice by all of the following EXCEPT:

A) Substance use.

B) Major depression.

C) Dementia.

D) Deficits knowledge.

E) Barely passing her board examination.

Answer 26.2.9 The correct answer is "E." Well, she "barely passed," and that's what she needs to achieve to be certified. All of the others, whether acute or chronic, may impair a health professional's ability to practice, but none of these automatically imply global impairment in medical practice. Each has its own implications for a colleague's medical practice. Special attention should be given to the colleague's actual and possible consequences in practice, given her specific job requirements and compensatory skills/supports, while assessing the presence and degree of impairment. One might say that dementia is OK in physicians working for insurance companies (or at least it seems so!).

Objectives: Did you learn to…

• Identify what items are required for inclusion in the medical record?

• Recognize the importance of patient confidentiality and understand when confidentiality might be broken in order to fulfill other ethical obligations?

• Recognize obstacles to protecting patient confidentiality?

• Describe the importance of individual and societal trust in individual physicians and the medical profession as a whole?

• Describe the ethical principles involved in self-disclosure?

• Identify an impaired colleague and determine how to best intervene?

Anne is a 19-year-old single female presenting for her first prenatal visit. She is G1P0, and roughly 10 weeks gestation by last menstrual period. She is new to your practice. Anne has had no medical care at this facility and no physician appointments since childhood. In recollecting the past medical history, Anne reveals that she has had several first-degree female relatives who have been diagnosed with breast and/or ovarian cancer: her mother, two maternal aunts, and a maternal grandmother. A great aunt also died young of unknown causes. Anne is unsure of the workup that they had, but there was significant morbidity and mortality as a result of the illnesses. It was as if God were playing with a cosmic grenade launcher when it accidently went off and blasted her family apart. "Oh, well. Genetic roulette," she says. Anne only recently became aware of this family history when her mother and aunts were diagnosed. When you ask if she has discussed genetic risks for breast cancer, Anne looks at you blankly and replies, "No."

Anne has been in a stable relationship with her boyfriend, Jordan, for 2 years. They cohabitate and are engaged, but have not set a wedding date. Anne has completed high school and works in telemarketing while applying to art schools. The pregnancy was not planned, but she and Jordan are thrilled, even if a little nervous, about having a baby.

Being an extraordinarily astute clinician, you are concerned about BRCA1 and 2 genes. In families with a high incidence of breast and ovarian cancer, mutations in BRCA1 are associated with an 85% lifetime risk of developing breast cancer and a 50% risk of ovarian cancer.

You wonder if this is the best time to bring up genetic concerns with Anne, given Anne's concurrent transition with an unplanned pregnancy.

Question 26.3.1 Which of the following is/are true about disclosure?

A) Nondisclosure is not justifiable due to fears that a patient will be distressed by the information, unless disclosure might cause death (e.g., suicide at hearing a diagnosis of cancer).

B) Regardless of the consequences, nondisclosure could be considered deception and would be morally wrong on the basis of this intrinsic feature.

C) Disclosure is important because it respects patient autonomy and optimizes a patient's ability to make an informed choice.

D) Nondisclosure may be a sign of paternalism rather than beneficence.

E) All of the above.

Answer 26.3.1 The correct answer is "E." There are a variety of moral theories which comment on whether or not deception or nondisclosure is morally appropriate. Most theorists rely on the principle of respect for patient autonomy, such that a person who has incomplete information is not able to act freely in making a choice for herself. "Consequentialism" is also a commonly used moral theory, suggesting that it is not the intrinsic nature of the act itself but the consequences that follow determine whether the act is good or evil (as in "the end justifies the means"). In virtue ethics, by comparison, the nature and motivation of the act are very important as a reflection of the physician's character and habits. In virtue ethics, deception is morally blameworthy because it is comparable to lying. In virtue ethics, motivation is also an important issue to judge the goodness of the action. Answers "B" and "C" both make reference, at least in part, to virtue theory.

Question 26.3.2 Which of the following is FALSE about testing for genetic conditions?

A) Informed consent for genetic testing should be taken more seriously and formally than other kinds of blood testing, such as obtaining a hemogram.

B) Physicians should ask patients what they would do with the different possible outcomes of the genetic test before the test is performed.

C) Physicians should make a recommendation regarding genetic testing guided by evidence-based medicine and the patient's specific narrative and values.

D) Physicians should urge patients to disclose positive results to relatives or spouses if the information is pertinent medically or emotionally to these third parties.

E) Physicians should never disclose genetic information to a third party without the consent of the patient.

Answer 26.3.2 The correct answer is "E." Genetic testing differs from other blood tests because of multiple actual and potential risks, including personal effects on the patient and her family, as well as discrimination by employers or insurers. There is a shortage of formally trained genetic counselors, and patients rely on their physicians to not only help guide their decision making about whether or not to perform the test, but what to do with the information obtained. Because such testing has profound medical and/or psychosocial effects on the patient and family, a discussion about disclosure should happen both before and after the test is obtained.

Confidentiality is important for many reasons, not only in establishing and maintaining a good physician–patient relationship and respecting patient autonomy but also because of the potential discrimination and misuses of genetic information in today's culture. However, when the risk of harm to another related person is high and the patient refuses to disclose important genetic information, there may be adequate cause to break confidentiality in order to prevent serious harm to the third party; therefore, "E" is a false statement.

You decide to disclose the possibility of genetic risk factors to Anne at the first prenatal visit and also discuss the risk of passing genes to the fetus. Anne seems overwhelmed and asks to bring Jordan to the next visit to discuss this further. When Anne returns with her fiancé, you discuss your concerns about the BRCA1 and 2 genes and why Anne's family history is suspicious. Jordan says, "I think you should be tested right away, Anne. This would totally change our future." Anne replies: "What are you saying? Will you leave me if I have the gene? I can't raise this baby by myself!"

Question 26.3.3 Which of the following statements are appropriate to consider in promoting the patient's best interests?

A) Patients are vulnerable.

B) Physicians have expertise that patient's lack.

C) Patients rely on their physicians.

D) Physicians and patients often agree on what constitutes a patient's best interests, although they may differ in the way they plan to meet those interests.

E) All of the above.

Answer 26.3.3 The correct answer is "E." The nature of a relationship between a physician and a patient may have as many permutations as there are individuals. However, it is important to appreciate the position of the patient and the need that has pushed her to seek care. Patients are vulnerable in many ways, and the vulnerability is enhanced by limited access to technological and scientific information. When external variables, such as Jordan's comment and Anne's response, come into play, physicians should pay attention to this narrative and take some responsibility for establishing and maintaining a supportive network even outside of the office. This is particularly important as physicians give patients information about difficult choices. While physicians and patients may often be able to negotiate a mutually acceptable alternative, an active dialogue is important. Supports and advocates who are familiar with the patient's values and wishes can be an important adjunct to medical decision making, as long as there is no material or psychological conflict of interests. Physicians should not adopt a completely hands-off policy in decision-making; rather, physicians should pay attention to supporting the patient with real options and evidence-based variables in a noncoercive, empowering relationship.

Anne decides not to have the test, but to have an elective abortion "just in case I passed on a gene to the baby." For the sake of argument, you are philosophically opposed to elective abortions in this scenario, but you would consider abortion an appropriate intervention if the fetus tests positive for the gene by chorionic villus sampling.

Question 26.3.4 What is the best ethical option for you at this point?

A) Explain that you are personally uncomfortable with abortion, but in deference to Anne's legal rights, you will make a referral to another physician who is willing to provide the elective abortion.

B) Refuse to perform or make a referral for the abortion.

C) Refer to a "pro-life" counseling agency.

D) Tell Anne, for reasons that you do not feel comfortable disclosing, you will no longer be able to care for her.

E) Perform the elective abortion, despite personal convictions, out of respect for the law and patient autonomy.

Answer 26.3.4 The correct answer is "A." Abortion is a fiercely contentious topic in the United States. Under the 1973 Roe v. Wade decision and in subsequent rulings such as Planned Parenthood v. Casey, the Supreme Court has affirmed a woman's legal right to abort a fetus. Physicians have responsibilities that should transcend views about a physician's own moral values, such as ensuring that informed consent is practiced and that the patient has medical care available. Informed consent requires a physician to provide the necessary information about the various medical choices available and to assess the patient's emotional needs. Coercion and failure to disclose clinically relevant information is inappropriate; for example, a referral to a pro-life group without informing the patient of the counseling center's perspective (when known) is a form of manipulation and failure to disclose. Abandoning the patient ("D") without a simple explanation is disrespectful, although the physician should be careful not to coerce her in other ways while revealing personal values/beliefs.

Physicians should note that in some states there have been rulings requiring physicians to participate in elective abortions if working in a public aid clinic or in an area with limited physician resources where transfer of care is not an option. Some physicians or institutions (such as Catholic hospitals with clear policies influenced by theological statements) have practiced conscientious objection and been subject to discipline of various forms, including legal sanction. Physicians should be mindful of competing moral values, seeking support and professional guidance in difficult moral and legal cases such that they can act with integrity and purpose in their roles as physicians and moral agents.

Three years later, Anne is seen in a new clinic. She had the abortion. Anne is now an art student and is married to Jordan. Since her last clinic visit, Anne has had a prophylactic mastectomy following a positive test for the BRCA1 gene. She has also had an elective tubal ligation. Anne wants to consider in vitro fertilization (IVF) and has a friend, Jessica, who is willing to donate ova. They put 18 embryos into cold storage, using Jessica's ova and Jordan's sperm. Anne has 6 embryos implanted, with the result of two fetuses that are carried to term. Anne decides that she does not want any more children and contacts the lab to discard the remaining embryos, eliminating storage costs. The lab agrees and sells the embryos to a private lab, where stem cell research is under way.

Question 26.3.5 What is NOT true about stored tissue samples?

A) The embryos are considered Anne's property only as long as she claims them.

B) Samples used for research purposes are potentially identifiable by third parties as belonging to Jessica and Jordan.

C) Tissue samples may be used only for their initial intended purpose, after which time they must be destroyed.

D) Third parties, such as research labs, upon discovering genetic anomalies in tissue samples, have no legal obligation to find and inform Anne, Jordan, and/or Jessica.

E) Embryos sold to a private lab may be used to establish germ lines via destruction of the embryo.

Answer 26.3.5 The correct answer is "C." At the time of publication, there is ongoing discussion about how to regulate use of tissue samples. While it might seem that this is an ethical question far removed from the purview of the family physician, patients in family practice clinics are very frequently targeted for various research protocols due to their regular follow-up and easy accessibility.

Patients donating tissue samples often give little thought to what happens to those tissues after they are obtained. In many cases, tissues are banked indefinitely after the initial research is conducted, with various identifiers linked to the tissue potentially including the donor's gender, geographic location, educational level, family history, or other private information (e.g., The Immortal Life of Henrietta Lacks). While efforts are made to respect the privacy of the donor, there are ways to track down the donor using even the limited identification information associated with the stored sample. Such means are especially facilitated by the wide availability of personal information via the Internet.

Tissue samples may be collected for one purpose, but later used for another. Tissue samples are very important in research and are often the limiting factor for studies, but should informed consent include asking donors for permission for each and every lab test run on the tissue sample? At what point, if any, does the tissue sample become the sole property of the lab? In the example of embryos, discarded embryos are sometimes sold to private labs; parents using IVF technology are often unaware that such embryos may be used to establish a stem cell line from which genetically identical embryos can be created using nuclear transfers. Such stem cell lines are highly lucrative for research purposes, and there has been discussion, for example, of whether parents should be compensated in some manner when a lab sells their discarded embryos or a research facility develops a product using the embryonic stem cells.

Question 26.3.6 All of the following are legitimate questions and concerns about the consequences of human somatic cell nuclear transfer, commonly called human cloning, EXCEPT:

A) Will cloning result in increased miscarriages and deformed fetuses, due to limitations of current technology to perform nuclear transfer?

B) Will cloning result in a culture preoccupied with "designer babies?"

C) Will cloning result in a culture that devalues persons with disabilities?

D) Will cloning increase reproductive options for same-sex couples, diminishing value of traditional settings for reproduction?

E) Will cloning result in the mass production of stormtroopers for Chancellor Palpatine's army, thus solidifying his control over the galaxy, allowing him to create the First Galactic Empire?

Answer 26.3.6 The correct answer is "E." The ethics of Star Wars, should not be applied to real, live patients. All the other choices have been raised as concerns, although there are many more arguments on both sides of the discussion about the relative risks and benefits.

Objectives: Did you learn to…

• Describe the ethical issues regarding disclosure?

• Appreciate the many competing interests involved in genetic testing?

• Identify patient and physician factors that affect the patient–physician relationship?

• Find an ethical and acceptable way to disagree with a patient and continue to assure that patient's healthcare?