AMA Journal of Ethics®

Illuminating the art of medicine

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AMA Journal of Ethics®

Illuminating the art of medicine

Virtual Mentor. April 2003, Volume 5, Number 4.

Policy Forum

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A Responsible Patient

The author provides of an overview of patient responsibilities and discusses the move away from the paternalistic style of physician care.

Swathi Arekapudi

The expectations of physicians--such as physicians' responsibility to make their patients' health their top professional priority--are articulated well and frequently in the literature. Much is spoken and written about patients' rights to certain health care services such as receipt of emergency care whether or not they can pay for it [1]. It is far less common, however, to read about patients' responsibilities in the medical setting. As the health care profession and patients themselves increasingly value patient autonomy, it becomes more urgent that patients take responsibility for their role in their own health care. The lack of literature on the subject suggests a lack of emphasis on the patients' roles in maintaining and improving their own health. With increasing patient autonomy, patients expect to be well-informed partners in the health care dialogue and are given greater freedom to decide if, how, and when they are going to accept medical care. Yet with the increased emphasis on autonomy, there is a congruent need to highlight patients' responsibilities for their own health; these responsibilities seem to get lost in the shuffle for patient rights and physician responsibilities. A patient-physician relationship that is built on good communication with both parties knowing what the other expects will best serve the patient's health.

The move from overt paternalism towards increased patient autonomy is illustrated by the change in the adjectives used by medical authorities over the course of a century to describe patients who do not follow medical advice. The terms evolved from the "vicious" and "ignorant" TB patients of the early 1900s, the "recalcitrant" after World War II, to the "non-compliant" patient that emerged in the 1970s [2]. Ironically the term non-compliant, which was developed specifically to be a non-judgmental phrase, has been criticized for its implication that patients should necessarily follow physician recommendations. "Non-adherent" is suggested as a better term because its lacks the implication that patients must necessarily follow their physicians' advice [2]. No doubt this new term will face a slew of criticisms in time.

Oftentimes terms like "non-compliant" are applied to marginalized people such as alcoholics, minorities, or immigrants. Indeed, trying to "predict" who will be non-compliant leads some physicians to withhold treatment, such as triple-drug therapy for HIV infections, from IV drug users who the physician thinks would not adhere to the treatment. Non-adherence to HIV drug regimen presents a danger not only to the patient as an individual but to the whole community, inasmuch as this behavior may lead to the development of drug-resistant HIV strains. Hence some physicians withhold treatment from patients they feel will not comply effectively [3]. Even though a doctor cannot oblige a patient to adhere to medically indicated treatment, he or she still has a responsibility to make sure that the patient adheres. Yet denying patients treatment based on predictions of future behavior does not seem like the best way to ensure patient health. The introduction of patients' responsibilities into this equation will help to solve this seemingly intractable problem.

Some of the problems that arise when a physician encounters a "difficult" patient, such as one who does not adhere to treatment, might be mediated by good communication and a physician's explanation of the patient's responsibility for his or her own health. Patients' responsibilities, as listed in the American Medical Association's Code of Medical Ethics, Opinion 10.02, include, but are not limited to the responsibility to:

  1. Be truthful and express their concerns clearly to their physicians.
  2. Provide as complete medical history as possible.
  3. Request information or clarification when they do not fully understand their health status or treatment.
  4. Cooperate with agreed-upon treatment plans and appointments.
  5. Take personal responsibility when they are able to prevent the development of disease.
  6. Consider participating in medical education by accepting care from medical students, residents, and others.

The above list provides a general picture of what is expected of patients. The complete Opinion can be found online. These responsibilities are not burdensome in their expectations and they generally serve the patient directly or the health of the community in general.

The modern patient-physician relationship is grounded in the autonomy of the patient and the need for the patient to make informed decisions. As we move away from the paternalism that formerly characterized patient-physician relationship, we see that active communication between the physician and the patient is invaluable in the patient's informed decision making. The goal of a physician, namely to improve or maintain the health of his or her patients when possible, can be accomplished by increasing the number of patients who adhere to recommended therapy. Though collaboration and cooperation are necessary they do not necessarily put the physician and the patient on equal footing in terms of medical knowledge. But through a patient-physician relationship built on a mutual understanding of what is expected of the other, patients will be able to understand their role in their own health care. Though physicians can no longer "order" patients to follow medical instructions they must now educate patients about the medical consequences of accepting or refusing treatment. The best method for achieving the goal of patient health is open communication between physician and patient [3]. Labeling a patient "difficult" or "non-compliant" will weaken the bond of communication between doctor and patient.



References

  1. Baker R. American independence and the right to emergency care. JAMA. 1999;281:859-860.
  2. Lerner BH. From careless consumptives to recalcitrant patients: the historical construction of noncompliance. Soc Sci Med. 1997;45:1423-1431.
  3. Lerner BH, Gulick RM, Dubler NN. Rethinking nonadherence: historical perspectives on triple-drug therapy for HIV disease. Ann Intern Med. 1998;129:573-578

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