Importance of clarifying patients' desired role in shared decision making to match their level of en

[Dolphin]

(Not an open access paper unfortunately. Probably a minority interest. I'm not sure I've anything earth-shattering to post but will post a few short extracts)

Full title: Importance of clarifying patients' desired role in shared decision making to match their level of engagement with their preferences


Mary C Politi, assistant professor1,
Don S Dizon, director, oncology sexual health clinic23,
Dominick L Frosch, fellow456,
Marie D Kuzemchak, research assistant7,
Anne M Stiggelbout, professor8

Author Affiliations

Correspondence to: M C Politi mpoliti@wustl.edu

We should not assume that certain groups of patients don’t want to or can’t participate in decisions about their healthcare, say Mary Politi and colleagues, and they offer advice on how to determine how much patients want to be involved

http://www.bmj.com/content/347/bmj.f7066

 

[Dolphin]

Quite a reasonable percentage of proponents of CBT/GET for ME/CFS don't want to give patients choices from what I can see. This particularly comes through if they're working for insurance companies where claims are denied if patients haven't done CBT or GET. But it is also evident in other things they say and do.

I think the papers and information on the research on patient preferences could be useful so patients aren't coerced into treatments so have started reading a bit on it. So that's the main reason I'm interested.

Shared decision making is a process during which clinicians and patients collaborate to make health decisions, considering both the best available evidence and patients’ preferences.9 It is particularly appropriate for preference sensitive decisions in which there are several options available and evidence does not point to a clear best choice, such as when choosing surgery for early stage breast cancer. It is also appropriate when patients must make difficult trade-offs between benefits and harms,

I think CBT and GET are good examples of this. One obvious trade-off/possible harm is in terms of the time and energy required to follow such regimes. Going for walks can mean one has less time and in particular energy for other activities. This is probably difficult for most people but can be particularly difficult for many people who are juggling other responsibilities e.g. work, studying, child-care, etc.

Then there is the risk of relapse and deterioration from CBT and GET.

So I believe shared decision making should be used much more in the ME/CFS realm.

However, despite these advantages, shared decision making is not widely implemented in practice.15 16 For example, a nationally representative study of US adults showed that primary care clinicians did not engage in shared decision making about common preference sensitive decisions such as choosing drugs to reduce risk of cardiovascular disease or deciding about cancer screening.16

 

[Dolphin]

Even if clinicians are experienced and have a positive relationship with their patients, their inferences about patients’ preferences are often inaccurate.8 These inferences may negatively affect the doctor-patient relationship. Patients can feel vulnerable and reluctant to express their concerns to clinicians in these situations because they fear being labelled “difficult” and receiving suboptimal care.23

8. Benbassat J, Pilpel D, Tidhar M. Patients’ preferences for participation in clinical decision making: a review of published surveys. Behav Med1998;24:81-8.
23. Frosch DL, May SG, Rendle KA, Tietbohl C, Elwyn G. Authoritarian physicians and patients’ fear of being labeled ‘difficult’ among key obstacles to shared decision making. Health Aff2012;31:1030-8.

The bolded bit is something I can relate to. And because on ME matters, I tend to know what I want and don't want, for anything not related to ME, both because of my aforementioned strong opinions on some aspects of health (i.e. the ME ones) and my relative lack of knowledge of other aspects of medicine, I can feel a bit "vulnerable and reluctant to express concerns".

 

[Dolphin]

In a national study of almost 3000 participants, nearly all respondents (96%), regardless of their demographic characteristics, preferred to be offered choices about their care and asked their preferences.28 About half (52%) of patients wanted to defer final decisions to their clinicians,28 but they still wanted to engage in deliberation about the choice. In another study about patients’ preferred role in decision making for invasive medical procedures,29 about 80% wanted shared decision making or patient led decision making, and 93% of patients wanted their clinicians to share risk information with them. In a review of surveys about patients’ preferences for participation in decisions, only 3-8% of patients stated they wanted no role in decision making.8

This contrasts with the situation a lot of people can be faced with, particularly in some countries, where often no choices will be offered apart from graded activity programs.

Preferences cannot be articulated or formed if the patient has inaccurate or missing information.10 Many clinicians believe they are already considering patient preferences and priorities in their treatment recommendations.34 Without engaging patients in a discussion of their values, clinicians often incorrectly assume patient values and preferences, resulting in a “misdiagnosis” of preferences.34 35

I think this can happen in situations where graded activity-oriented approaches are being offered.

 

[Dolphin]

Conclusion

The assumption that some patients are not able or do not want to participate in decision making is inconsistent with both the evidence and contemporary models of care. We suggest clinicians start by acknowledging equipoise, recognising underlying trade-offs between options, and offering treatment choices. They should discuss evidence based information without assuming some patients will not want to engage in shared decision making. Once patients are informed, they can decide whether they would like more (or less) responsibility for their health decision. This approach can improve patients’ satisfaction, understanding, and confidence in their choices, whether or not they defer final decision making to their clinicians.37

<snip>

I think relatively few clinicians seem to recognise the underlying trade-offs between options (i.e. what I mentioned previously that graded activity programmes (e.g. CBT, GET, etc.) can use up value energy patients may not easily be able to spare.

Similarly, as I said previously, treatment options are often not given (e.g. energy envelope/pacing type strategies).

 

[Esther12]

Ta D. I thought that was interesting, and good it was published in the BMJ.

 

[Valentijn]

I think relatively few clinicians seem to recognise the underlying trade-offs between options (i.e. what I mentioned previously that graded activity programmes (e.g. CBT, GET, etc.) can use up value energy patients may not easily be able to spare.

Agreed ... I think a big part of the problem is that the doctors offering us treatments do not know what the options are, or the consequences of those options. To a large extent, researchers and "experts" are doing the same thing to our doctors which our doctors are doing to us - withholding the info needed to make a choice and simply telling us only what they think is best for us to know.