How to Involve Patients in Healthcare Decisions

It is one thing to recognize that choices between healthcare interventions often hinge on patients' values and quite another to find a practical and useful way to involve patients in their healthcare decisions. So how can physicians go about doing this?

Clinicians could simply play the role of information providers, giving patients all the information (ideally in a comprehensible manner) that patients need to make their decisions. Genetic counselors often take this approach, seeing their role as educators but not advisors. They help patients understand information, but believe it is beyond their purview to make clinical recommendations. The decision, they believe, is up to the patient. Alternatively, clinicians could give patients information in conjunction with a clinical recommendation, involving patients in decisions by giving them the final say, but guiding them with their recommendations.

More often, physicians reside somewhere between those extremes. Across physicians, then, there is a continuum of decision-making styles, with some physicians leaving decisions completely up to patients, with others sharing decision-making authority with patients, and with yet others taking the decision-making role on themselves by making strong clinical recommendations to their patients. Although the use of some level of participatory decision making has been correlated with higher levels of patient satisfaction and better clinical outcomes, there is little empirical evidence about differences in outcomes across the continuum of participatory decision making.9 Many physicians benefit from tailoring their decision-making style to the individual patient and the specific clinical context.

As do physicians, patients vary in their decision-making styles. Some patients prefer to completely defer decisions to their physician. Others see themselves as the primary decision maker and do not want physicians to give them a recommendation. Many patients want to share decision-making roles with their clinicians.10-13

Moreover, a given patient's decision-making style varies depending on the clinical situation. When situations are more complex and alternatives do not create value-laden trade-offs, patients often want physicians to play a more significant role in making decisions.14,15 For example, oncology patients being evaluated for possible pulmonary embolisms would rarely feel any need to discuss the relative merits of Doppler testing versus d-dimer testing.16 These kinds of decisions are seen as medical decisions that require a clinician's training to make and which do not lead to the kinds of trade-offs that require patients to be heavily involved in the decision. Other decisions are less clinically complex and involve important trade-offs, such as those described previously between quality of life and quantity of life. In these cases, more patients express an interest in being involved in the decision. For similar reasons, patients express more interest in being involved in decisions for nonacute conditions than emergent ones.

Clinicians should not be expected to know how likely the average patient would be to desire a specific decision-making role in every clinical context they encounter. There would be little reason, in other words, for clinicians to remember that 13% of patients want a physician's recommendation in one specific clinical context whereas 53% want one in another context. As interesting as these statistics are, they are not relevant to the one-on-one decisions that clinicians and patients make. Rather than familiarize themselves with these statistics, clinicians should find out whether this patient wants to be involved in this decision. And that is best handled by talking with the patient. Such conversations are crucial, because clinicians typically underestimate how involved cancer patients want to be in their decisions.17,18

Although there is significant variance, across patients and across situations, in how involved patients want to be in their healthcare decisions, one desire is almost universal: patients want to be thoroughly informed about their treatment alternatives, even when they want their clinicians to decided what alternative they should take.10,19,20 This situation, then, creates another challenge for clinicians, that is, providing their patients with comprehensible information about their healthcare alternatives to help them make good decisions.

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