Paradigm Shift Involving Patients in Healthcare Decisions

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A generation ago, clinicians did not struggle with these questions, because patients played a limited role in their healthcare decisions. For example, a 1961 survey revealed that the majority of patients undergoing cancer treatments did not know that they had cancer; their oncologists withheld such information because of fear that patients could not emotionally handle it.1 Many physicians did not discuss treatment alternatives with patients, because they, the physicians, would be making the decisions. For example, it was not uncommon for a woman to wake up from a breast biopsy procedure to learn not only that she had breast cancer but that the surgeon had gone ahead and performed a mastectomy.2

A paradigm shift has occurred over the past several decades. Most physicians now recognize that patients deserve information about their health, and few think it is appropriate to withhold cancer diagnosis from patients, except in the most extreme circumstances.1 This shift was spurred on in part by the legal community, who encouraged patients to sue physicians for not informing them about their treatment alternatives; by the growth of the bioethics movement and its emphasis on patient autonomy; and by larger societal changes, with consumer groups and community organizations becoming more involved in decision making that was previously left to experts.

Accompanying this shift has been a change in clinicians' attitudes. Many clinicians now recognize that healthcare decisions often involve trade-offs that require value judgments. For example, oncology trials used to measure survival rates while paying little attention to quality of life issues. As the science of quality of life measurement matured, however, such measures have been incorporated into the vast majority of trials, thereby providing important information to guide oncologic decision making. But at the same time, quality of life information has made these decisions more complex. In the past, a study might simply have shown that the median survival for chemotherapy A was 3 months greater than chemotherapy B, making the decision about which chemotherapy to choose relatively straightforward. Now, however, a trial might show that chemotherapy A, although leading to longer survival, also leads to a lower quality of life. Now, the best choice depends on patients' preferences for longevity versus quality of life.3

Many clinical decisions are not purely scientific matters, but also involve value judgments that vary from person to person. For example, the right choice, for a patient choosing between surgical and radiation treatment of his prostate cancer, depends on how much he thinks he would be bothered by surgical complications such as impotence or incontinence and on how important he feels it is to have the cancer physically removed from his body. Similarly, whether a woman should begin receiving annual mammography at age 40 or 50 depends on how she feels about the inconvenience and discomfort of mammography, the financial costs of screening, the consequences of false-positive testing, and the benefits of receiving more aggressive screening.

Patients deserve a role in medical decisions, not only because those decisions often hinge on patients' values but also because higher levels of patient involvement in healthcare decision making leads to better health outcomes. Patients who are more involved in decisions about their care are more likely to adhere to their treatment regimens, to report higher levels of satisfaction with medical care, and to have better functional and clinical outcomes.4-7 For example, a randomized trial demonstrated that a brief intervention to increase patient involvement in medical decision making among diabetic patients significantly lowered their HgbAlC levels.8

Clinicians used to leave patients in the dark about their healthcare decisions. Those days are long gone. Part of the art of medicine now includes knowing how and when to involve patients in healthcare decisions.

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