Elsevier

Social Science & Medicine

Volume 47, Issue 3, 1 August 1998, Pages 329-339
Social Science & Medicine

Patient participation in decision-making

https://doi.org/10.1016/S0277-9536(98)00059-8Get rights and content

Abstract

We review the research both for and against patient participation in decision-making and conclude that (a) patients want to be informed of treatment alternatives, (b) they, in general, want to be involved in treatment decisions when more than one treatment alternative exists, and (c) the benefits of participation have not yet been clearly demonstrated in research studies. However, studies that have addressed the latter issue suffer from methodological problems such as small sample sizes and lack of control for potential confounding variables. We conclude that patient participation in decision-making is justified on humane grounds alone and that physicians should endeavor to engage patients in decision-making, albeit at varying degrees, when more than one effective treatment option exists. We propose that methods be developed to evaluate a patient's level of “readiness” to participate in decision-making and that interventions that match the patient's level of readiness be applied to increase participation.

Introduction

In today's evolving health care environment, patients are regarded as consumers who are expected to be involved in decisions about their medical care. The American College of Physicians (1984)has declared that the patient has a right to self-determination and the World Health Organization has stated that patient involvement in care is not only desirable but a social, economic, and technical necessity (Waterworth and Luker, 1990). Moreover, lawmakers have deemed it necessary to legislate that patients be informed of treatment options so that they can participate in their medical decisions. For example, there are laws in 18 states in the United States requiring physicians to inform women about treatment options for breast cancer (Nayfield et al., 1994; Nattinger et al., 1996), and some states have begun implementing similar laws for prostate cancer (Nayfield et al., 1994).

Studies that measured whether patients actually want to participate in decision-making have yielded conflicting results, and the evidence for a positive outcome for patients who participate in decisions about their medical care is suggestive rather than conclusive. These mixed results account for the reluctance on the part of some researchers to encourage universal patient participation in decision-making (Steele et al., 1987). Although not all patients will want to take control of their medical care, it is still important that their concerns, desires, and values be incorporated into decisions about their care.

We review the research both for and against patient participation in medical care. Focusing on conditions with more than one effective treatment option, we also discuss the direction future research might take in trying to increase participation. The scope of this review is limited to situations where the patient is cognitively capable of participating in decision-making.

Section snippets

Do patients want to participate in decision-making?

Studies investigating whether patients actually want to participate in treatment decisions have yielded conflicting results, often depending on how participation in decision-making is defined. This can range from the patient actively engaging in the decision-making process, to the patient making the ultimate decision. We review studies performed with different populations — some surveyed patients facing real decisions and others questioned healthy members of the public about hypothetical

Research with patients

Ende et al. (1989)used the Autonomy Preference Index to assess 312 patients' preferences concerning decision-making and receiving information. Patients were presented with vignettes describing three conditions of increasing ill health and treatment decisions associated with them. They were asked to assign control for these decisions to one of the following: the physician alone, mostly the physician, both the patient and physician equally, mostly the patient, or the patient alone. The index

Research with non-patients

Vertinsky et al. (1974)presented 200 healthy subjects with a case study that described a patient with a sore throat and the possible options for treatment. In a structured interview, they asked these subjects to rate the importance of a series of actions the patient might take during both a first-time and follow-up visit. The majority did not want to take total control, preferring, for example, to obey the doctor rather than ask for more information or resort to self-medication. But they did

The benefits of patient participation in medical care

Researchers have studied whether patients' involvement in their care leads to improved medical outcomes such as reduced pain and anxiety, quicker recovery, and increased compliance. Some research suggests a measurable benefit of participation in terms of such outcomes (Eisenthal and Lazare, 1976; Haynes et al., 1976; Schulman, 1979; Stiles et al., 1979; Cassileth et al., 1980; Greenfield et al., 1985; Kaplan et al., 1989; Brody et al., 1989a; Brody et al., 1989b; Lerman et al., 1990). In a few

The benefits of patient participation in treatment decisions

Other research has focused specifically on whether active participation in the decision-making process (as opposed to participation in medical care as discussed above) is related to improved outcomes. One study of 15 overweight children found that even when involvement in the decision made no difference in the type of weight-loss program assigned, the seven children who thought they had chosen their own treatment program lost more weight than the children who thought they had no choice (

Methodological limitations

It is difficult to draw clear conclusions from the results of this research partly due to methodological limitations. For example, in their review of the active-patient concept, Steele et al. (1987)pointed out that the benefits shown were often small, follow-up periods tended to be too short, and study samples were small or select (for example, see Table 1, Table 2). Some of the breast-cancer work suffers from these as well as other problems. The measurement of choice was not consistent among

Can patients participate fully?

Various models have been proposed to enable physicians to interact better with their patients. However, there will always be some imbalance in the patient–physician relationship since the patient is sick and vulnerable and the physician has the expert knowledge. Social, ethnic, and educational differences will exacerbate this imbalance (Brody, 1980; Haug and Lavin, 1981; President's Commission, 1982; Emanuel and Emanuel, 1992), in some cases to the point where a patient may be too intimidated

Strategies to engage patients in decision-making

Various strategies and interventions have been devised to engage patients in decision-making. Decision analysis has been used to help doctors and patients choose between treatment alternatives (Keeney, 1982; Speedling and Rose, 1985; Barry et al., 1988). The treatment of choice depends on the likelihood of the possible consequences of each alternative occurring, and the preferences of the decision maker concerning these consequences (Keeney, 1982; Speedling and Rose, 1985). Shared

Differentiating patients

Research shows that a range of patients exists with respect to decision-making, and therefore, the application of an approach described above — or any other approach — to increase participation for all patients may not be the most effective strategy. Pierce (1993)categorized patients with early-stage breast-cancer into the following categories: delayers, who consider at least two options but their deliberation is perfunctory and they immediately prefer one option; deferrers, who accept their

Future research

An important first step in the study of engaging patients in the decision-making process would be to establish just what participation in the decision-making process means. For example, we in no way wish to imply that participation in the decision-making process means that the patient should be the sole decision-maker. Rather, we suggest that participation should be defined by whatever level the patient is most comfortable with — beyond the response of “You decide for me doctor”. Level of

Summary

Two findings that seem to emerge from the array of studies on patient participation are that patients want to be informed of treatment alternatives, and that they want to be involved in treatment decisions when more than one effective alternative exists. The “correct” choice of treatment in such instances is largely a matter of individual patient preference — something physicians will not inherently know. We believe that patient participation in decision-making is justified on humane grounds

Acknowledgements

This research was supported by grants from the Picker/Commonwealth Fund and the National Cancer Institute (Grant Nos. CA59408 and CA57755).

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