Engaging patients in medical decision makingBMJ 2001; 323 doi: https://doi.org/10.1136/bmj.323.7313.584 (Published 15 September 2001) Cite this as: BMJ 2001;323:584
The end is worthwhile, but the means need to be more practical
- Richard L Kravitz, professor and director,
- Joy Melnikow, associate professor
The growing consensus that patients ought to be more involved in their own care lies at the confluence of several powerful ideas. Political trends, thinking on ethics, and research on health services have all contributed. As experienced consumers, patients understand that they have rights, and they are much less inclined than they used to be to leave medical decisions entirely to the experts. Ethicists have by and large accepted the principle that autonomy (what the competent, informed patient wants) trumps beneficence (what the doctor thinks best for the patient) in all but the most extreme circumstances.1 In addition, there is evidence that the expanding involvement of patients in care produces better health outcomes, providing an empirical rationale for what may have been an inevitable shift in power and social control.2
A supplement to this September's issue of Quality in Health Care focuses on engaging patients in medical decisions. Twelve articles, derived from a Medical Research Council conference, cover the meaning, mutability, and measurement of patients' preferences regarding treatment. The proceedings leave the clear impression that although respecting patients' preferences is a fundamental goal of medicine, these preferences are vulnerable to manipulation and bias.3 Yet they are too important to be abandoned in a shrug of professional frustration.
Three questions dominate the debate about the role of patients in making treatment decisions. Can patients take a leading role in making decisions? Do they want to? What if doctors and public health professionals don't like their choices?
Many decisions related to health are complicated. The reasons for this complexity go beyond uncertainty in the scientific evidence and variation in how patients value different states of health. Decisions about treatment also depend on patients' attitudes to risk. 4 5 Risk involves the probability, severity, and timing of an adverse outcome. Some patients prefer a very bad outcome put off into the future to a moderately bad outcome occurring now. That is one of several reasons why patients' decisions and their behaviours are sometimes at odds with the recommendations of health providers.6
As if deciphering evidence and understanding patients' values were not enough, family and culture play important if poorly studied roles in decisions about health and communication between doctor and patient. Cultural beliefs can have a profound influence on decisions regarding treatment. For example, some South East Asian cultures consider surgery to result in perpetual imbalance, causing the person to be physically incomplete in the next incarnation.7 Navajo patients and families believe that direct information about risks from a procedure or a diagnosis is harmful and that talking about death can actually hasten its arrival.8
These complexities explain why fully informed, shared decision making is so difficult to conduct in practice.9 Yet communication with patients could be improved on many levels. Evidence based approaches include training doctors, coaching patients, and using aids to decision making.10 Until these methods are more fully implemented, abandoning the shared decision making model on the grounds that patients or doctors are not up to it would be premature.
That said, not all patients want to make their own decisions. In a study of 1012 women with breast cancer, 22% wanted to select their own treatment, 44% wanted to collaborate with their doctors in the decision, and 34% wanted to delegate this responsibility to their doctors.11 Preferences for active engagement in care vary with patients' backgrounds and the clinical situation. Yet a desire for information is nearly universal. Most patients want to see the road map, including alternative routes, even if they don't want to take over the wheel.
Patients who make decisions will at times select treatments that are less effective or less cost effective than the medically recommended approach. For example, patients with mild to moderate hypertension value the benefits of drug treatment less than doctors do (particularly specialists) and are more distressed by side effects.12 Therefore, encouraging patients to make well informed choices about treatment of mild hypertension could easily result in fewer drugs being taken, higher mean blood pressures, and more strokes and heart attacks in the population. On the other hand, an estimated 50-65% of patients with chronic conditions adhere to their treatment.13 By not taking their drugs patients are indirectly expressing a choice. Are doctors willing to accept and encourage explicit disagreement with their recommendations? Or is the current subterfuge less painful?
Patients do want to be involved in or at least informed about healthcare decisions, and the medical profession will adapt—sooner or later. Moving towards the goal of collaborative decision making, however, requires more attention to the realities of clinical practice than is currently evident. Complex and time consuming methods of educating patients about risks and then eliciting their preferences—for example, standard gamble, time trade-off, decision analysis, repertory grid—are important for research but not realistic in a 15 minute visit to a general practitioner or even a 45 minute consultation with a specialist. We need practical tools, based on research, that help clinicians to learn from patients and help patients learn from medical experts. Asking patients how they understand their illness and how much they want to be involved in decisions regarding treatment can be a foundation for doctors seeking an informed, collaborative model of care.