http://bmj.com/cgi/content/full/323/7313/584

 

BMJ 2001;323:584-585 ( 15 September )

Editorials

Engaging patients in medical decision making

The end is worthwhile, but the means need to be more practical

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 adaptsooner 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 preferencesfor example, standard gamble, time trade-off, decision analysis, repertory gridare 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.

Richard L Kravitz, professor and director. 
Joy Melnikow, associate professor. 

U C Davis Center for Health Services Research in Primary Care, Sacramento, California 95817, USA

1.	Balint J, Shelton W. Regaining the initiative. Forging a new model of the patient-physician relationship. JAMA 1996; 275: 887-891[Medline].
2.	Kaplan SH, Greenfield S, Ware Jr JE. Assessing the effects of physician-patient interactions on the outcomes of care. Med Care 1989; 27(suppl 3): S110-S127[Medline].
3.	Cassell EJ. The nature of suffering and the goals of medicine. N Engl J Med 1982; 306: 639-645[Abstract].
4.	Lloyd AJ. The extent of patients' understanding of the risk of treatments. Qual Health Care 2001; 10(suppl I): i14-8[Medline].
5.	Cher DJ, Miyamoto J, Lenert LA. Incorporating risk attitude into Markov-process decision models: importance for individual decision making. Med Decis Making 1997; 17: 340-350[Medline].
6.	Montgomery AA, Fahey T. How do patients' treatment preferences compare with those of clinicians? Qual Health Care 2001; 10(suppl I): i39-43[Medline].
7.	Fadiman, A. The spirit catches you and you fall down. New York: Farrar, Strauss and Giroux; 1997:33.
8.	Carrese JA, Rhodes LA. Western bioethics on the Navajo reservation: benefit or harm? JAMA 1995; 274: 826-829[Medline].
9.	Braddock III CH, Edwards KA, Hasenberg NM, Laidley TL, Levinson W. Informed decision making in outpatient practice: time to get back to basics. JAMA 1999; 282: 2313-2320[Medline].
10.	O'Connor AM, Rostom A, Fiset V, Tetroe J, Entwistle V, Llewellyn-Thomas H, et al. Decision aids for patients facing health treatment or screening decisions: systematic review. BMJ 1999; 319: 731-734[Abstract/Full Text].
11.	Degner LF, Kristjanson LJ, Bowman D, Sloan JA, Carriere KC, O'Neil J, et al. Information needs and decisional preferences in women with breast cancer. JAMA 1997; 277: 1485-1492[Medline].
12.	Steel N. Thresholds for taking antihypertensive drugs in different professional and lay groups: questionnaire study. BMJ 2000; 320: 1446-1447[Full Text].
13.	Haynes RB, Dantes R. Patient compliance and the conduct and interpretation of therapeutic trials. Control Clin Trials 1987; 8: 12-19[Medline].

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Collections under which this article appears: Organization of health care Other management Patient - caregiver relationships

Rapid Response responses to this article:

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Are we engaged?

Stephen Workman, Assistant professor , Dalhousie University

bmj.com, 14 Sep 2001 [Response]

Decision making: a two way process?

Alberto Febles, GP Registrar , Crown Dale Medical Centre

bmj.com, 15 Sep 2001 [Response]

Promote "pro-choice" advance statements

Michael H.K Irwin, Retired GP , 9 Waverleigh Road, Cranleigh, Surrey GU6 8BZ

bmj.com, 16 Sep 2001 [Response]

Engaging patients in medical decision making

Syed Shahid Mahmood, Consultant and a/ Chief of Anesthesia and ICU. , King Fahd Military Medical Complex,Dahran,KSA.

bmj.com, 20 Sep 2001 [Response]

ALL INFORMATION, DATA, AND MATERIAL CONTAINED, PRESENTED, OR PROVIDED HERE IS FOR GENERAL INFORMATION PURPOSES ONLY AND IS NOT TO BE CONSTRUED AS REFLECTING THE KNOWLEDGE OR OPINIONS OF THE PUBLISHER, AND IS NOT TO BE CONSTRUED OR INTENDED AS PROVIDING MEDICAL OR LEGAL ADVICE.  THE DECISION WHETHER OR NOT TO VACCINATE IS AN IMPORTANT AND COMPLEX ISSUE AND SHOULD BE MADE BY YOU, AND YOU ALONE, IN CONSULTATION WITH YOUR HEALTH CARE PROVIDER.