ReviewPatients’ preference for involvement in medical decision making: A narrative review
Introduction
Increasing emphasis is being placed on involving patients in making decisions about their care [1]. This is the result of a number of socio-political factors [2]. As disease patterns have shifted towards a high prevalence of chronic disease there is, for an increasing number of conditions, no overall best treatment. Many patients and health professionals feel patients themselves are in the best position to evaluate the trade-offs between the benefits and risks of alternative treatments [3], [4].
Patient expectations about their role in choice and decision making have been influenced by living in a consumer society [3]. Ready access to health information via media such as the Internet has become the norm for many. Social movements, such as the women's movement, have emphasised the importance of autonomy and have actively challenged medical authority [5].
Furthermore, highly publicised scandals and widely reported concerns of under-funding have eroded patient confidence in the NHS and the medical profession leaving patients seeking more information and involvement in their care [3], [6]. Involving patients also helps meet demands for accountability as health professionals can be more open about decision making [3], [6].
There are a number of roles for doctor and patient in medical decision making. These have been conceptualised as a spectrum with paternalism at one end, at the extreme of which the doctor makes decisions on behalf of the passive patient based on clinical expertise and without considering the patient's preferences. At the other end is informed decision making, in which the doctor fully informs the patient, detailing all treatment options and their implications, transferring technical expertise so that the patient can make a decision alone, based on his or her own preferences (active involvement) [5], [7], [8], [9]. Shared decision making, in which doctor and patient exchange information, both detailing their treatment preferences, deliberating and then deciding the treatment together, is in the middle of the spectrum [3]. An alternative model is that of an agency relationship in which the patient fully informs the doctor of his or her preferences and then delegates responsibility for decision making to the doctor, who ideally would then make an identical decision to that the patient would make, if the patient had the clinical expertise of the doctor [10].
Whilst research has consistently shown that doctors underestimate the amount of information that patients want [11], it is less clear how much patients actually want to be involved in making decisions about their treatment and what influences their preference for involvement. This literature review focuses on what influences patients’ desire to be involved in medical decision making in order to clarify present knowledge and identify further research opportunities.
Section snippets
Method
Searches were carried out using Medline, Web of Science, PsychINFO, CINAHL, The Cochrane Library and HMIC (key words consumer participation, patient participation, decision making, patient preferences, shared decision making, patient involvement in decision making) covering the years 1975–2003. The references of identified articles, the indexes of journals from which articles were retrieved, important texts about patient involvement in decision making and key reviews were also searched.
Results
Thirty three articles were identified; 25 quantitative studies, seven qualitative studies and one mixed method study (see Table 1, Table 2).
Discussion and conclusion
In the context of socio-political change patient involvement in decision making has become an important issue for health professionals and an understanding of and responsiveness to individual patient's preferences is important in improving the quality of care provided.
Patients’ preferences for involvement in decision making are clearly variable and the process of developing them is likely to be highly complex. This review has identified a number of influences on patients’ preference for
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