lunes, 3 de diciembre de 2012

Shared decision making and non-directiveness in genetic counselling -- Elwyn et al. 37 (2): 135 -- Journal of Medical Genetics

Shared decision making and non-directiveness in genetic counselling -- Elwyn et al. 37 (2): 135 -- Journal of Medical Genetics

J Med Genet37:135-138 doi:10.1136/jmg.37.2.135
  • Perspective

Shared decision making and non-directiveness in genetic counselling

The term “genetic counselling” (GC) covers many different activities, but at its core it is a process of communication.1 It can refer to the diagnostic assessment of a child with multiple developmental problems. It can describe the facilitation of a decision making process in relation to predictive genetic testing for a late onset disorder. It can relate to a decision about prenatal diagnosis or the termination of a pregnancy at risk of a serious inherited disease. Topics discussed within GC can include plans for the continuing medical management of a person at risk of complications of a genetic disease, and can encompass whether or how to broach the topic of genetic disease with other members of the extended family.
The nature of the clinic discussion of these different elements of GC will vary greatly, and any one consultation is likely to entail a discussion of only one or a few from the full range of possible topics.
Clinical geneticists, in contrast to most other medical practitioners, are said to espouse a “non-directive” method of “counselling” clients.23 This is generally taken to mean that clinical geneticists are trying to help their clients arrive at the best decisions from personal perspectives and are not guiding them towards any particular decision (for example, to test or not to test, to terminate a pregnancy or to continue it). Whether non-directiveness (ND) is attainable, however, remains unclear and contested.
There are good reasons why clinical geneticists and genetic counsellors might wish to claim that their work is non-directive.4Such a stance is in keeping with the contemporary dominance of autonomy over the other recognised principles of medical ethics.5It protects the profession from an easy confusion with, and moral contamination from, the eugenics movement, and this will be useful to genetic counsellors both in public debate and internally within themselves. It protects the counsellors from over-involvement with clients and perhaps also from litigation.6 The definition of ND that we have presented so far, however, is of only limited use. It does not amount to an operational definition that enables us to recognise ND in practice, and it does not enable us to tackle the question of what guidance of clients by counsellors might be appropriate.
Non-directiveness may be difficult or impossible to achieve for many reasons. There may be structural (health service organisation) or social factors that promote uptake of a screening test that cannot be adequately neutralised by the behaviour of the counsellor within the consultation.4 There may be good clinical reasons for the clinician to recommend surveillance for complications of the family's genetic disorder,3 as in Marfan syndrome or some family cancer disorders. The information given to clients may be tailored to their specific situation and their understanding and value system, rather than a predetermined set of facts being transmitted7; this selection and framing of information will influence the decisions made by clients.8-10 Indeed, there is an inherent difficulty in separating the giving of information, which is acceptable within ND, from the giving of advice, which is not.11 There may also be valid ethical reasons for a clinician or counsellor to recommend a specific course of action to clients, for example, for them to transmit information about their genetic condition to other members of their family.12

Directiveness and non-directiveness

Kessler13 has suggested that all genetic counselling entails influencing clients or attempting to do so, but that directive counselling aims to influence their behaviour in a specific way, whereas non-directive counselling attempts to influence their thinking and the process by which they arrive at decisions. Wolff and Jung14 have developed this theme, pointing out that the goal of Rogerian ND in psychotherapeutic counselling is the promotion of client maturation, but that in GC the goal of ND has, in practice, often amounted to a restriction of the scope of professional responsibility. They suggested that the term ND should no longer be used in the context of GC and argued that the responsibilities of the counsellors need to be better defined. Shiloh15 has written that genetic counsellors (should be) “helping clients reach a decision wisely rather than reach a wise decision”. How would we recognise and distinguish between the counselling that is non-directive (that is, a “wise” process) and that which is directive (and, perhaps, “unwise”)?
One approach has been to use a decontextualised definition of ND, no direction provided vis a vis the action to be taken, and measured from the viewpoints of both counsellor and counsellee respectively, as in the work of Michie et al.16Unfortunately, this approach is unable to acknowledge or respond to the clinical context and is therefore unable to contribute to discussions of, with, or among practitioners in relation to their work.6 Neutrality in GC has been assessed by van Zuuren17 using a Grounded Theory approach (based on a qualitative analysis of data from actual practice), and this work, as does that of Michie et al,16shows frequent deviations from ND, as emerged from interviews with counsellors.310 This approach has led to recommendations for the training and practice of genetic counsellors. Kessler,13 rather than agreeing to avoid the term “non- directiveness”, has developed his approach and proposed a definition that can apply to GC. He accepts that the concept of ND cannot simply be lifted from Rogerian psychotherapy, because the counsellor in GC cannot delegate the entire responsibility for the counselling agenda to the client; he proposes a modified definition for the genetic context: “Non-directiveness describes procedures aimed at promoting the autonomy and self-directedness of the client”.18Although this modifies the concept of “not directing” clients, this definition allows us to acknowledge that informative, prescriptive, or confrontational interventions made by the counsellor can sometimes be non-directive,19 even if the client has not previously sought such an intervention from the counsellor. For example, the counsellor may provide some information to the client, suggest one or two possible courses of action, or ask the client to consider the consequences of their decision for other members of their family. The operationalisation of Kessler's definition in research studies may still be difficult, but will be possible within analytic frameworks that attend to context and to the full range of communicative processes within GC.

When might non-directiveness be inadequate?

We have seen, above, that ND remains central to professional self understandings within GC, but there are some areas where counsellors clearly find the ND approach difficult to maintain. This may be because their communication and counselling skills are insufficient,18 but there are two contexts in which ND may be inappropriate as a framework to guide counsellor practice.
There are particular circumstances when a counsellor, especially if she/he is also a clinician, may wish frankly to recommend a course of action to the client. This may happen when the counsellor considers it to be in the client's best interests, as understood in a narrow, conventional medical sense, to accept some treatment or investigation: we can call this a clinical recommendation. ND may also appear inadequate when the counsellor recommends a course of action to the client for ethical reasons, as when it would be in the interests of other family members for the client to disclose information about him/herself because they may find it helpful to know about their risk of developing a genetic disorder or of having a child affected by a genetic disorder: we can call this an ethical recommendation. We suggest that shared decision making (SDM) can prove helpful as a way of incorporating such considerations into our understanding of GC and to help judge the appropriateness of such interventions.

Shared decision making (SDM) and clinical recommendations

Shared decision making provides an approach that is complementary to the “non-directive” approach, and it provides a framework that is open to evaluation.20-23 Although there is little in the way of empirical work using the SDM approach, the model is actively debated both by clinicians24 and by health economists25 as one that can provide many advantages as clinicians balance the tensions between evidence based guidance and the need to respect patient choice. Geneticists also face the challenge of making complex information about risk and uncertainty accessible to patients and we feel that the SDM framework would prove helpful. The issue of evaluation will be especially important when clinical outcomes are being influenced by the decisions made. SDM can be helpful when the counsellor seeks the opportunity to make a clinical recommendation to the client and provides guidance as to how this degree of “directiveness” could be negotiated.
In SDM, the clinician/counsellor and the client share information on the basis of which a decision is to be made. They then discuss their views and come to an agreed decision for which they share the responsibility. SDM should not be regarded as a prescriptive set of rules but the principles allow ND to flourish where it is relevant and also allow the clinician to contribute his professional opinion (a valid biomedical perspective) into the decision making process, without denying the critical importance of the patient's wider value systems. The characteristics of SDM are presented in table 1, with the suggested competencies and stages listed in table 2. As SDM receives increasing interest within the field of “patient centred” and “evidence based” medicine,2627 its potential in medical genetics should be considered.

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