The Doctor Patient Relationship in Cancer Care Four Models

The doctor—patient relationship has particular relevance in the context of cancer. Frequently life-threatening, clinically complex, and requiring sustained, repeated face-to-face interactions, cancer and its treatment raise the fundamental question of what exactly is involved when patients and clinicians enter into a "relationship." For months and perhaps years a cancer sufferer and his or her clinician or clinicians must meet, talk, listen to, and learn from one another in an atmosphere built on mutual trust, good communication and understanding, competency and compassion, and openness. Without these interpersonal characteristics the doctor—patient relationship is likely to be a rocky one, leading to possible patient and clinician dissatisfaction, mistrust, and a compromised quality of care.

The respective roles that patients and clinicians ideally should adopt, however, are not widely agreed on or easily implemented. Different models ranging from strict paternalism to complete patient autonomy have been suggested. Below, four of these models and their relevance to the cancer care setting are reviewed. Although paradigmatic in several important ways, these are not the only models that are relevant to cancer care. Variations on these models and other alternatives have been proposed (Ong et al.; Gattellari et al.).

THE PATERNALISTIC MODEL. Definable as the overriding or restricting of the rights or freedom of individuals for their own good, paternalism entails clinicians ensuring that patients receive the interventions that best promote their health and well-being regardless of the patients' preferences (Goldman). Although many scholars oppose strict paternalism, arguing that it is too coercive, some concede that paternalism has moral validity and limited practical relevance. Paternalism may be useful and necessary in emergency situations in which the time taken to discuss treatment options or obtain informed consent may harm the patient irreversibly (Emanuel and Emanuel, p. 73). Otherwise, strict paternalism rarely is advocated or considered tenable in the treatment of diseases such as cancer.

Nevertheless, patients and/or their families may at times express a desire for a paternalistic approach. In a large behavioral cancer study, for example, the authors audiotaped the parent of a young boy with leukemia in a discussion with an oncologist who was trying to explain the option of enrolling the child in a Phase III clinical trial. The parent interrupted the clinician and said, "Anything you gotta do to fix him! I don't care." The clinician persisted, saying she felt obligated to inform him about the clinical trial. She again was interrupted by the parent, who insisted: "You don't have to tell me all the lingo. Just fix him [the patient]!"

Clearly, a paternalistic approach in which the clinician calls all the shots may be preferred by some healthcare consumers. Other studies have highlighted similar preferences, finding that some cancer patients prefer to relinquish decision-making control in favor of a more passive or deferential role, a phenomenon that may be rooted in the inordinate trust some people place in their doctors or in prevalent cultural norms and values that discourage shared decision making and patient autonomy (Flores).

THE INFORMATIVE OR CONSUMER MODEL. Like all patients, cancer patients can be viewed as consumers, and their clinicians as providers of information and treatment. This model supports a view of the doctor—patient relationship as a neutral and transactional one in which the clinician furnishes, without trying to influence the patient, the facts relevant to the patient's diagnosis, prognosis, treatment options and their risks and benefits, and aspects of care. The goal of this approach is to empower the patient with as much information as possible so that the patient can make a fully informed, autonomous decision about treatment. Although this approach may prove beneficial to patient understanding and informed decision making, it also may lead to information overload and patient dissatisfaction. The burden of choice and decision making falls squarely on patients in this model, an outcome that not all cancer patients find desirable or helpful (Gattellari et al., p. 1867).

THE INTERPRETIVE MODEL. Also based on a view of the clinician as an information provider, the interpretive model suggests that clinicians furnish the facts and go several steps further to help the patient understand them and make a decision about treatment. The clinician may have to act as a counselor of sorts, supplying relevant information, elucidating the patient's values and preferences, and suggesting which treatment options best match the patient's values. An oncologist adopting this role, for example, might listen to a breast cancer patient, articulate the patient's values and then inform the patient that it is important for him or her to fight the cancer but that the treatment must leave the patient with a healthy self-image and quality time outside the hospital. Without recommending a particular course of action, the oncologist might suggest that the patient's values seem compatible with radiation therapy but not with chemotherapy because the former would do better at maximizing the patient's chance of survival while preserving the patient's breast.

Patient autonomy is conceived as self-understanding in this model; the patient "comes to know more clearly who he or she is and how the various medical options bear on his or her identity" (Emanuel and Emanuel, p. 69). Objections to this model include the possibility that clinicians may misinterpret the patient's values or impose their own values under the guise of articulating those of the patient.

THE DELIBERATIVE MODEL. From the standpoint of this model the clinician acts as the patient's teacher or friend, helping the patient deliberate on various aspects of the disease, prognosis, and treatment options. The clinician aims at most for moral persuasion, not coercion, and tries to engage the patient in a dialogue about what treatment is best in light of the patient's condition and health-related values. An oncologist adopting this role might begin by pointing out the facts, articulating the patient's values, and then balancing the options with the patient in a discussion of their risks and benefits and potential impact on the patient's life. This model supports an oncologist who goes on to recommend a particular course of action, suggesting, for example, that radiation therapy may be the best option because it offers maximal survival with minimal risk, disfigurement, and disruption of the patient's life (Emanuel and Emanuel, p. 71).

In contrast to the interpretive model and its emphasis on self-understanding, the deliberative model conceives of patient autonomy as "moral self-development" (Emanuel and Emanuel, p. 69). A major criticism of the deliberative model is that clinicians should not be entitled to act as moral teachers or guardians; their role is to heal without regard to a patient's personal values or morals. However, this criticism is subject to the counterargument that many people may not want or expect their clinicians to be simply mechanistic healers and may desire help—especially when faced with the prospect of cancer treatment—in developing a personal moral foundation for their long-term health and well-being.

In their classic work on the subject Thomas Szasz and M. H. Hollender make the point that the doctor-patient relationship is a relatively novel concept in modern medicine. Instead of fostering its relationship with patients as people, they argue, medicine has cared primarily about its relationship to such "things" as anatomic structures, cells, lesions, bacteria, and viruses (p. 278). Certainly this characterization rings true for oncology during the early and intermittent phases of the "war on cancer" (Proctor). Patients' rights, truth telling, and other ethical components of cancer care that are taken for granted today were not always high on the agenda in much of the twentieth century, when efforts were directed primarily toward developing a basic understanding of cancer and options for treating it. Before 1970 the paternalistic model was widely accepted, entitling oncologists to decide unilaterally what sorts of information and treatment their patients should get.

As different models of patient autonomy in cancer care are developed and debated by experts ranging from medical sociologists and anthropologists to oncologists and research nurses in oncology, the doctor-patient relationship in cancer care increasingly is undergoing scrutiny and refinement. Few experts still advocate the paternalistic model. The debate centers more on whether the model for cancer care should be informative, interpretive, or deliberative or should involve some combination of these models and their respective strengths. At the same time researchers across a spectrum of disciplines increasingly are consulting cancer patients and their communities for input on the merits or drawbacks of particular ways of gaining information, making decisions, adhering to drug regimens, and developing effective coping mechanisms for cancer. Such informant-based, empirical research will continue to play a vital role in understanding and developing the oncologist—patient relationship in ways that promote quality of care and quality of life for people with cancer.

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