Involvement in treatment decision-making: Its meaning to people with diabetes and implications for conceptualisation

doi:10.1016/j.socscimed.2007.09.001

Social Science & Medicine

Volume 66, Issue 2, January 2008, Pages 362-375

https://doi.org/10.1016/j.socscimed.2007.09.001 Get rights and content

Abstract

Patient involvement in decision-making is widely regarded as an important feature of good-quality healthcare. Policy-makers have been particularly concerned to ensure that patients are informed about and enabled to choose between relevant treatment options, but it is not clear how patients understand and value involvement.

We investigated the meaning of involvement in treatment decision-making for people with diabetes. We conducted semi-structured interviews with 18 people aged between 20 and 79 who had type 1 or type 2 diabetes selected from 4 multi-practitioner outpatient clinics in the Grampian area of Scotland. We used several strategies to probe their understandings of involvement, including a discussion of how they would respond to a question about involvement in treatment decisions that appears on the National Patient Survey used to monitor the quality of healthcare in England.

Participants associated involvement in decision-making with a number of features relating to the ethos and feel of healthcare encounters (welcoming; respectful; facilitative of patients’ contributions; and non-judgemental); communication about health problems (practitioners attending to patients’ views and patients feeling listened to; practitioners giving clear explanations based on their professional knowledge and patients understanding these); and communication about treatments (practitioners explaining treatment rationales in ways that patients understand and enabling patients to feel they have a say).

Our findings have implications for practical attempts to involve patients in decisions about their care and for the conceptualisation and assessment of patient involvement. They suggest that practitioners who aspire to facilitate patient involvement should attend to the ethos they foster in consultations and the way they discuss problems as well as to the provision of information about treatment options and the scope patients have to influence decisions. Models and taxonomies of patient involvement in decision-making need to be developed to accommodate both problem-solving phases and the relational and subjective dimensions of involvement.

Introduction

Patient involvement in treatment decision-making is widely regarded as a feature of good-quality healthcare. In many western nations it is advocated by state health departments and leading organisations of health professionals. In the context of decisions about professionally controlled interventions such as prescription medicines and surgery, attention has generally focused on the information that is given to patients about relevant options, and on ensuring that decisions reflect patients’ free, informed, deliberated preferences (Kukla, 2005). This reflects the choice-centred notion of professional respect for patient autonomy that currently dominates bioethics (see Beauchamp & Childress, 2001).

Although efforts to promote patient involvement are not new, research continues to suggest that patients are not routinely enabled to make free, informed and deliberated treatment choices. Studies of consultations identify deficiencies in the extent to which health professionals tell patients about healthcare options and elicit their views about these (Elwyn et al., 2005; van den Brink-Muinen et al., 2006); studies of patients’ perspectives on decision-making find that many think that their doctors rather than they made key decisions about their treatment (Entwistle et al., 2004; Ford, Schofield, & Hope, 2003); and studies of patients’ understandings of and attitudes towards particular interventions suggest that significant numbers have made some poorly informed choices about their healthcare (Fagerlin et al., 2006; Marteau, Dormandy, & Michie, 2001).

However, there is scope to debate why and to what extent these findings reflect problems with healthcare quality. Patients do not always expect or want to be given information about a menu of treatment options and responsibility for making a choice between these (Say, Murtagh, & Thomson, 2006). The reasons for this are still poorly understood, and the implications for evaluations of patient–practitioner communication and decision-making are contested (Entwistle, 2006).

Patients who report preferences not to make or take responsibility for treatment decisions might still say they want to be involved in decision-making. A few qualitative investigations suggest that people might consider themselves to have been involved—and value feeling included—even though they have not been informed about and considered all the options and have not significantly influenced the selection of a course of action (Beaver et al., 2005; Entwistle, Williams, Skea, MacLennan, & Bhattacharya, 2006; Henman, Butow, Brown, Boyle, & Tattersall, 2002). Investigations of patients’ responses to structured questions about their involvement have found that people may take a broader range of issues into account than those emphasised in models that focus on information exchange and patient influence (Davey, Lim, Butow, Barratt, & Redman, 2004; Entwistle et al., 2004; Entwistle, Skea, & O’Donnell, 2001).

In England, the National Patient Survey that is used to monitor the quality of healthcare provision from patients’ perspectives assesses involvement in treatment decision-making with a question that invites patients to evaluate their involvement relative to their own preferences. Referring to a recent healthcare encounter or episode, it asks them “Were you involved as much as you wanted to be in decisions about your care and treatment?” and offers the response options “Yes, definitely”, “Yes, to some extent” or “No” (Health Care Commission, 2005). (These response options have varied slightly across surveys.) In 2004 and 2005, around 31% of primary care patients and 46% of inpatients indicated that they were not involved as much as they wanted to be (Health Care Commission, 2006). However, the question does not impose any particular definition of involvement on respondents, and the forms and degrees of involvement that patients regard as desirable are poorly understood.

We undertook a qualitative study to explore what it means to people with diabetes to be involved in decisions about their treatment in the contexts of both outpatient and inpatient care. We hoped to generate information that could inform both practical efforts to improve patients’ experiences of involvement and developments in the conceptualisation of involvement.

The rationale for focusing on people with diabetes was that they are usually encouraged to develop an understanding of their condition and to engage actively in its management, so they should be well placed to participate in treatment decisions (Funnell, 2004). Also, they have experience of interacting with a variety of health professionals and of considering and revisiting a number of decisions relating to the management of their condition, so should be able to reflect on situations in which they have been more and less involved.

Section snippets

Recruitment and consent

Adults with diabetes were recruited from 4 multi-practitioner outpatient diabetes clinic sessions in May–August 2005 in the Grampian area of Scotland. The study was approved by Grampian Research Ethics Committee. Posters advertising the study were placed in the waiting room. M.P. was present in the waiting room to provide information sheets and explain the study. In the last 2 clinic sessions, she approached people from the gender/age groups previously under-represented in the sample to offer

Sample characteristics

Twenty-one people volunteered contact details at the clinic and 18 were interviewed. All participants were white British. They included 10 men and 8 women from across the 20–79-year age range. Seven had type 1 diabetes and 11 had type 2 diabetes. They were between 1 and 31 years since diagnosis and followed a range of management regimes (Table 1).

Participants’ accounts of their diabetes care to date were diverse. Most drew some contrasts between their experiences with different practitioners

Communication about treatments

All participants respected and wanted to avail themselves of practitioners’ expertise in relation to the management of their diabetes. They were generally inclined to accept treatment recommendations, although we heard several examples of patients having negotiated for something other than what their doctors first suggested. The few (including a nurse) who talked in terms of making ‘informed choices’ for themselves also noted that they valued a ‘steer’ from health professionals. However, there

Discussion

We have identified a number of features relating to communication about health problems and treatments and to the ethos and feel of consultations that people with diabetes associate with their involvement in treatment decisions. After considering the strengths and limitations of our study, we discuss the implications of our findings for the conceptualisation and assessment of patient involvement in decision-making and for practical efforts to promote patient involvement in decision-making.

Our

Conclusion

Our investigation of patients’ understandings of involvement in treatment decision-making has highlighted the insufficiency of models and practices that focus narrowly on the exchange of information about treatment options and the activation of patients as choosers. It leads us to suggest that clinicians and researchers with an interest in patient involvement in decision-making need to attend to communication about health problems and to the ethos and feel of patient–practitioner interactions.

Acknowledgements

The authors are very grateful to the people who participated in the interviews. We also thank Dr. Ken McHardy for clinical advice and for facilitating access to the multi-practitioner clinic, and secretarial staff at the Health Services Research Unit for help with the production of study recruitment materials and with interview transcription. Vikki Entwistle is funded via the Alliance for Self Care Research (Scottish Funding Council, Chief Scientist Office, NHS Education Scotland). The Health

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Involvement in treatment decision-making: Its meaning to people with diabetes and implications for conceptualisation

Abstract

Introduction

Section snippets

Recruitment and consent

Sample characteristics

Communication about treatments

Discussion

Conclusion

Acknowledgements

Social Science & Medicine

Social Science & Medicine

Patient Education and Counseling

Patient Education and Counseling

Social Science & Medicine

Social Science & Medicine

Patient Education and Counseling

Patient Education and Counseling

Patient Education and Counseling

Social Science & Medicine

Principles of biomedical ethics

Exploring the decision-making preferences of people with colorectal cancer

Health Expectations

‘Unilateral’ and ‘bilateral’ practitioner approaches to decision-making

Social Science & Medicine

Patients’ preferences for involvement in clinical decision-making within secondary care and the factors that influence their preferences

Journal of Nursing Management