What does ‘shared decision-making’ mean, and to whom?

According to the current UK Government, in the NHS there should be ‘no decision about me, without me’.  Shared decision-making  – enabling patients to be involved in choices about treatment and management of their health, in partnership with health professionals – could breathe life into policy rhetoric.  But our efforts are hampered by a lack of clarity about what ‘shared decision-making’ means, and to whom.

From April 2013 Clinical Commissioning Groups will be tasked with promoting shared decision-making.   This will need to be predicated on a very clear understanding of what ‘shared decision-making’ means to patients, and to clinicians.  Further, how do these views relate to the Department of Health’s understanding of shared decision-making?

From work by the Picker Institute we learn that the term ‘shared decision-making’ has no meaning for most members of the public, and that there is a considerable gap between ‘usual practice’ and shared decision-making as the norm in health care.

This points to an underlying tension between lay understandings, current practice ‘norms’, and health policy: it suggests a need to revisit the epistemological foundations upon which our understandings of shared decision-making are built.  We need to ask:  What does ‘involving me in decisions about my care’ mean to people who use health services, and those who provide care?  How do patients want to be involved in decisions about their care?  What strategies work in helping clinicians to elicit patients’ priorities within treatment decision making?

Lurking here are also fundamental questions about the primary purpose of shared decision-making.  In Health Affairs we have recently seen much discussion about the benefits of ‘engaged’ and ‘activated’ patients.  Does interest in promoting shared decision-making stem in good part from a belief that this may offer a mechanism through which to improve self-management and, if so, what are the implications of this tacit assumption for defining suitable outcomes from shared decision-making?    To what extent should conversations about shared decision-making in clinical practice be influenced by the potential gains in population health, and economic sustainability of our national health system, that could result from more active self-management among the 15 million UK adults with long-term conditions?  These may be difficult questions.  But they are not inconsequential.

Such questions bring to light uncertainties and potentential differences in point of view. To give two examples:

1.  Uncertainties about the process of shared decision-making

What does a ‘discussion of patient priorities’ mean?  Can this include the opportunity to discuss how decisions about my health fit with other priorities I have that are related to my social relationships, quality of life, or personal identity?  What is on/off the agenda in the context of conversations about patient priorities, and is this clear to patients and to clinicians.

 2.  Uncertainties about the possible outcomes of shared decision-making

What constitutes an acceptable outcome from shared decision-making?  In relation to self-care for diabetes, for example, can this include a carefully considered decision ‘not to do more than I already do now’?  Is this a legitimate outcome from shared decision-making, from the point of view of patient, clinician, or the Department of Health?  Do patients’ have a choice?

Breathing life into the policy of “no decision about me, without me” requires fresh thinking.  While there is a clear commitment to the principle of shared decision-making within UK health policy, as evidenced for example in the QIPP Right Care programme, important uncertainties about the process and suitable outcomes of shared decision-making  remain. We need to resolve these uncertainties to promote effective patient choice and better healthcare outcomes.

 

Interested to learn more?

  1. No decision about me, without me. Liberating the NHS: Further consultation on proposals to secure shared decision-making, NHS, 2012
  2. Coulter, A., Collins, A.  Making shared decision-making a reality: No decision about me, without me.  King’s Fund, 2011
  3. Mulley, A., Trimble, C., Elwyn, G.  Patients’ preferences matter.  King’s fund, 2012
  4. Stiggelbout, A M., et al., Shared decision making: really putting patients at the centre of healthcare, BMJ 2012;344:e256
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