ABSTRACT: Difficult dialogues with patients facing life-changing decisions are an intrinsic part of oncologic practice and a major source of stress. Having a sophisticated approach to the concepts of autonomy, paternalism, and culture can help in addressing difficult dilemmas that arise around the issues of disclosure and decision making. This article addresses some of the most common major challenges in oncologist-patient communication with a nuanced approach to the concepts of autonomy, paternalism, and culture. It introduces the new concept of “voluntary diminished autonomy” and describes the implications this concept has for the consent process. It also attempts to bring clarity to common problems and misconceptions relating to culture, paternalism, and therapeutic privilege as these pertain to the communication practices of oncologists.
Mrs. K. M., a 37-year-old ultra-orthodox Jewish mother of two small children, presents with metastatic pancreatic cancer with extensive liver metastases. She is weak and cachectic. Given the very advanced disease and her poor performance status at presentation, the outlook is poor and the likelihood of substantial benefit from chemotherapy is small. The family, who were told of her diagnosis by the diagnosing surgeon, request that you not tell her how serious her condition is. They explain that in their culture any information should be given to her husband, and that he and his rabbi will decide what is best for her to know.
At times when her family has not been present, the patient has repeatedly remarked to the junior resident that she wants to be told what is happening to her.
You, the attending of record, sit by her bedside and take her hand. She turns on her pillow, looks you in the eye, squeezes your hand, and says, “I want to live! I need to see my children grow up! I need you to give me hope! I am the sick one here but I feel like no one is talking to ME.” [AUTHOR NOTE]
• Are you going to tell her what is going on despite the explicit request of her family?
• How much will you tell her about the grim prognosis or the low likelihood of benefit and the potential for harm from treatment?
• Does her plea for hope demand that you hold back on disclosing the full scope of the impending tragedy?
• Without all of the information, how can she possibly make an informed decision about whether to receive what will probably be ineffectual and possibly harmful chemotherapy?
Oncologists caring for patients with advanced cancer typically need to engage in repeated, emotionally challenging conversations with patients and their families. This is one of the most difficult aspects of the oncologist's role.[1,2]
Patients are dealing with the emotional impact of a life-threatening illness and with decisions regarding treatments that are often complex and that may offer limited likelihood of benefit, while at the same time trying to strike a balance between maintaining hope and having realistic and achievable goals.[3-5] Interactions between patient and oncologist occur in the context of patient preferences, family, and culture, all of which profoundly influence the discussions. These factors influence the amount of information patients want, how they want to receive that information, and ultimately, how they make decisions regarding their medical care. How these discussions are carried out is a matter of profound consequence for the emotional well-being of patients and their families.[6,7]
Several aspects of communication between oncologists and their patients remain contentious:
• Autonomy: To what degree must physicians observe the principle of full disclosure in order to ensure true autonomy and informed decision making on the part of the patient?
• Culture: In caring for patients from different cultures, how should the physician respond to requests of family members who claim that in their culture decision making should be left to the family rather than to the patient?
• Paternalism: How does one balance the need for information with the concern that some patients may be harmed by physicians' honoring requests for either too much or too little information? When should the physician invoke the “therapeutic privilege” of paternalistically overriding a patient request or not seeking the patient's opinion?
Despite advice from philosophers, sociologists, psychologists, and communication experts, these issues continue to plague and often confuse individual oncologists as they confront challenging and sometimes tragic situations.[1,2,8] This article outlines a nuanced approach to the concepts of autonomy, culture, and paternalism, as these relate to the sorts of issues raised in the questions above. The approach is contextualized with important sociological observations that can provide further help to clinicians as they address the questions that arise in daily practice; these observations also suggest some pragmatic solutions.
To what degree must physicians observe full disclosure in order to ensure true autonomy and informed decision making on the part of the patient?
Patient autonomy is generally understood to imply that physicians ought to disclose as much information as desired by the patient to facilitate participation in decision making to the degree preferred by the patient. Disclosure, in this context, refers to the imparting of information necessary to make informed decisions about ongoing care. The key types of information disclosed include information regarding the diagnosis, the extent of disease, the range of therapeutic options available, the likelihood of benefit or harm from each of the treatment options, the potential severity of any possible adverse effects, and the anticipated extent of benefit.
What is often overlooked, however, is that autonomy has a spectrum of expressions encompassing isolated autonomy, relational autonomy, and voluntary diminished autonomy.
• Isolated autonomy: Common ethical discourse often involves a very narrow definition of autonomy—that of isolated autonomy, which relates to a concept of self-interest totally detached from relational or other considerations.
• Relational autonomy[11,12]: Most persons live in cultural and familial contexts involving obligations, duties, reciprocal relationships, and interdependence.[11,13] More often than not, patients voluntarily consider the impact of their decisions on valued relationships and seek the counsel of family members or other significant stakeholders in their lives in the process of making decisions. Cultural and interpersonal factors may influence the degree to which patients incorporate these considerations into their deliberative processes. When the relationships involved are not coerced, this is a valid expression of autonomy.
• Voluntary diminished autonomy: Some patients have valid concerns that they may be harmed by excessively candid diagnostic or prognostic information or by the burden of decision making. They may not want to know the exact nature of their disease, its extent, or the details of their likely prognosis.[14-17] To protect their perceived self-interest, they may request that some issues remain unaddressed, undisclosed, or vague. Respecting this sort of request has been called “necessary collusion,” but it is better described as voluntary diminished autonomy.
Although the decision to request limited information is autonomous, having less information renders the patient less able to make informed decisions. Indeed, these requests often go hand in hand with a request that the decision making be guided by the physician's recommendations (ie, “I will agree with whatever you feel is best for me”), or a request to delegate the decision making to another person,[18-22] often a family member, religious leader, or the treating physician (ie, “I want someone else to make the decision for me”).
Another variation on voluntary diminished autonomy is the patient who does not see it as his or her role to make medical decisions.[20,22] He or she may feel, for personal or cultural reasons, that the decision making should be the responsibility of some other person, be it a relative, the treating physician, a communal leader, or a religious authority.
Respect for autonomy, therefore, requires a nuanced understanding of the sort of autonomy that the patient desires—and this does not always require a process of “full disclosure.” Indeed, excessive disclosure or candor in situations in which it is not desired or requested may sometimes be considered an “assault of truth.”
Voluntary diminished autonomy has important implications for the consent process. A patient who chooses not to receive all of the relevant information cannot give informed consent to treatment, and the usual approach of asking the patient to sign an “informed consent” document is inappropriate in such a setting. In a situation such as this, an assent form should include the following elements:
• A statement that the patient has been offered information about his or her condition and the treatment options.
• Confirmation that the patient has been provided all of the information that he or she wanted to receive about his/her condition, treatment options, the likelihood of benefit, and the risks involved.
• Confirmation that the patient has entrusted the informed decision making to a nominated person who has been fully informed of the likelihood of benefit, the potential risks of harm and burden, and alternate therapeutic options. That person may be asked to either make the decision on behalf of the patient, or to recommend the treatment to the patient for his/her approval.
When informed treatment decision making is delegated, it is prudent that the surrogate decision-maker confirm that there has been an informed decision-making process based on full disclosure of potential benefits, risks, and alternatives.
Some useful communication strategies for eliciting patient preferences regarding disclosure of information are presented in Table 1.