Clinical Ethics 101: Practical Ethical Principles for Oncology Fellows

Fiduciary Responsibility

Education in medical ethics is required in medical school and residency programs, yet there is so much variability in the timing and delivery of this education and many house staff report inadequacies and gaps in their ethical training. Although physicians traditionally think of ethics during times of crises when a difficult case results in moral distress, it is actually important to consider ethical issues as part of our daily responsibilities as a physician. This is true whether we are engaging in research or direct patient care. Numerous studies have shown that physicians who are knowledgeable about ethical issues are more likely to recognize ethical dilemmas in clinical practice and feel more confident addressing these issues. Rather than using a tragic case to teach ethics, I will provide a few key principles that are essential for clinical practice.A special relationship exists between patient and physician that extends beyond ordinary professional obligations. The relationship with a physician is different from most other professional relationships, since a physician is provided information on confidential lifestyle choices, is allowed to examine our body, and may perform invasive procedures. This relationship is based on presumptions of confidentiality, safety, and loyalty. Fiduciary responsibility is the ethical obligation of a physician to honor a patient’s trust and act in ways that honor the patient’s interests above the competing interests presented by the demand of families, the institution, or even our own lives. It includes the obligation to promote the best interests of the patient (beneficence) while minimizing any potential harm (non-maleficence).

Decision Making & Consent for Treatment

For example, your patient is anxiously waiting for you to deliver the results of her disease evaluation, but the news is not good and her son has already demanded that you not disclose any negative information to his mother. You are anxious about giving the bad news, not sure how to handle the son’s requests, and your co-fellows have invited you to lunch off campus that would allow you to avoid this difficult encounter a little longer. The principle of fiduciary responsibility reminds you it is your duty to honor the interests of your patient over the competing issues in this encounter. It would be your duty to see the patient before lunch and disclose to her son when he made his request that it is your professional obligation to honor his mother’s wishes to receive her test results. A small minority of patients will prefer “not to know,” but this can be easily clarified by asking patients their preference for delivery of important medical information in advance of testing. When there is an overbearing family member, it is helpful to ask this question of patients when they are alone. Knowing you might have to deliver bad news after a disease evaluation, it is often helpful to set a time frame to return results to the patient and ask them to consider inviting family to help them process the information.The ethical principles of autonomy and respect for persons recognize an individual’s right to self-determination and allow patients to agree to or refuse a medical treatment. We often do not question a patient’s decision-making skills unless they are clearly very confused or refuse a recommended medical therapy. Patients who lack the global ability to make decisions may be labeled “incompetent” by the courts, but this is a legal decision and physicians do not make competency decisions. As a physician, it is important to assess your patients’ decision-making capacity (DMC), whether it is in discussions of a medical intervention or prior to consent for research. DMC is the task-specific ability to make an individual medical decision, does not require a consult from a psychiatrist, and can be assessed by any physician. In order to have decisional capacity, the patient must be able to understand the diagnosis, prognosis, and treatment alternatives, as well as the risks and benefits of each. It is not enough that the patient can simply repeat the factual information. DMC requires that a patient be able to appreciate how it applies to the situation and express how the decision falls within his or her life plan and value system.

Patients may have DMC for one medical decision, but lack DMC for another decision. DMC can fluctuate over time and attempts should be made to maximize a patient’s ability to understand and appreciate a treatment decision. For example, time discussions to coincide with the patient’s “best” time, and minimize the effects of other interventions (drugs, dialysis) and environmental distractions (noise, television). The patient’s family, friends, and primary physicians can provide valuable insight into the patient’s capacity (“he’s not acting like himself”) and may help facilitate communication with the patient.

Assessing DMC balances 2 risks: failing to respect a patient’s right to self-determination versus failing to protect well-being and best interests if a patient lacks decisional capacity. Consultation from psychiatry or the ethicist can be useful in cases that are unclear or when conflicts exist over the capacity assessment. Decisions that are riskier and more complex (enrollment in a phase I or II clinical trial) require the patient to have more DMC to make the decision at hand than do more simple medical decisions.

It is often morally distressing to accept patients who seem to be making the so-called “wrong choice,” however this is not automatically a reason to override patient autonomy. Fiduciary responsibility reminds us of our obligation not to abandon patients who make “poor” or “wrong” decisions. In patients who make unorthodox requests, have religious refusals of care, or are making the wrong choice, the assessment of DMC provides an opportunity for communication and discussion with the patient. Careful listening with open-ended questioning to clarify unclear points in the patient’s decision making may resolve a misunderstanding or reveal common ground to negotiate a mutually agreeable treatment plan. Often involvement of pastoral care (institutional or from the patient’s primary community) can be helpful in fostering communication surrounding religious issues in care decisions.

Surrogate Decision Making and Advance Care Planning

One exception to religious freedoms involves religious refusals related to pediatric patients. In Prince v Williams, the US Supreme Court stated, “Parents may be free to become martyrs themselves. But it does not follow they are free, in identical circumstances, to make martyrs of their children before they have reached the age of full and legal discretions when they can make that choice for themselves.” The fiduciary responsibility is to protect the interests of the child; however, attempting to override parental decision making is not appropriate when the prognosis is grave even with accepted treatment or if the treatment being refused is not of clear benefit or efficacy.If the patient is found to lack capacity then a surrogate/proxy decision maker (SDM) should be appointed to make decisions on behalf of the patient. The role of the SDM is to make decisions consistent with the patient’s previously expressed wishes (at time of capacity) if these wishes are known. When the patient’s wishes are unknown, the SDM should make decisions in the patient’s best interests based upon what they believe that patient would have wanted. As a physician, your fiduciary responsibility remains with your patient, and it is important to also evaluate the DMC of the SDM. It may be necessary to hold a family or team meeting or request an ethics consultation if the SDM makes choices that are known to be contrary to the patient’s wishes.

In any patient with a chronic illness, such as cancer, it is impossible to predict events that may result in the future loss of capacity; for example your patient could develop neutropenic sepsis and be intubated in the ICU. Therefore, it is important to ask patients early in the care course who they would like to make decisions on their behalf in the event they are unable to do so. Although there are default SDM precedents based upon local legal jurisdictions, patients with capacity can appoint whomever they wish to act as their health care proxy. Documenting this information in the medical record, per institutional guidelines, allows clinicians to identify the appropriate SDM, which is particularly helpful when there are disagreements among potential surrogates (example: a conflict among adult children over a decision involving their parent).

Resolving Ethical Dilemmas

Proxy decision-making discussions are excellent opportunities to begin clarifying patient preferences surrounding life-sustaining treatments. Using open-ended questions it is possible to ask the patient if they have previously had discussions with the designated surrogate about end-of-life issues and ask t he patient to tell you more about the discussion. You can ask the patient what they would want the surrogate to consider in the event he or she was having difficulties making a decision. When appropriate, offer to facilitate a discussion between the patient and surrogate about the responsibilities of a surrogate and the types of decisions that proxies might be asked to make on behalf of a patient. It is im portant to document the patient’s goals and wishes in the medical record and these conversations can often lead to the completion of a formal advance directive when the patient is ready. Even when the patient is not ready to complete an advance directive, documentation of his or her goals and preferences surrounding lifesustaining treatments can be helpful in future decision making.Ethical conflicts in clinical care of ten arise from breakdowns in communication or divergence of goals among individuals caring for or related to a patient. It is said t hat good ethics begins with good facts; therefore, the first step in resolving a dilemma is to have accurate information from the individuals in conflict. Interdisciplinary team meetings or family care conferences can often resolve perceived conflicts by facilitating communication among the stakeholders involved in patient care. Goal-setting discussions allow patients to discuss their wishes and values, which can help you uphold your fiduciary responsibility to the patient when decisions arise with the potential for moral distress.

Your hospital ethics committee (HEC) is a valuable educational resource and should not be perceived as the “ethics police.” Take time to identify the members of your HEC and utilize them as a resource “curbside” when you need help thinking through a difficult case. This simple communication may resolve your dilemma or, when the case is particularly challenging, may lead to a formal consultation. Finally, the first step in resolving an ethical dilemma is recognizing the dilemma itself. Sharpen your abilities to recognize ethical dilemmas by attending ethics rounds and educational sessions whenever possible.

Liza-Marie Johnson MD, MPH, MSB is a clinical fellow in pediatric hematology/ oncology, the Vice-Chair of the Institutional Ethics Committee, and a member of the Institutional Review Board at St. Jude Children’s Research Hospital in Memphis, TN.