Big Decisions

Marie Anne Durand completed work on the amniocentesis patient decision support last year and a decision grid has now been prepared. This is draft at the moment – so very willing to adapt and change.

A new version of the breast cancer surgery options grid uploaded today. We spotted a confusion about rates of further surgery and made changes.

Thanks to alerts from Twitter colleagues, an error had crept into the PSA Decision Grid and apologies for delay in sorting it out. New Grid now uploaded. Comments welcomed.

Paulina Bravo, who has ventured to Cardiff from Santiago in Chile to do a PhD, is working with us on the potential design of an intervention to support people who have become infected with HIV. One of the toughest decisions ever is when and to who to disclose the fact that you have become HIV positive. There are clearly a wide range of benefits as well as problems related to disclosure and it is a complex decision and one that has to be re-visited many times as one makes new relationships. We have developed a decision grid http://www.bigdecisions.net/decision-grids/hiv-disclosure/that provides some insights into the issues. This is still under development by Paulina and the supervision team (Adrian Edwards, Stephen Rollnick and I) and we’d be very interested in feedback. See the Grid under the Decision Grid link.

Engaging with all the researchers in the decision laboratory and in other networks to create decision grids… the gist of decisions boiled down to the most relevant attributes, organised by options in columns, thus allowing head-to-head comparisons. In parallel, working with Emma Melbourne and others to create a generic decision support ‘grid’ that will allow the user to populate the grid with data from the web-based grid. Anyhow, all will become clearer. Feel free to join us and suggest decision grids what we can add to the site.

Well, what do you think? What are the stakes here? Let us paint you a scenario. You are 65, slightly overweight man but have managed to give up smoking a few years ago.

Diabetes was diagnosed when you were about 55 years old. At first you tried to manage the diabetes by changing your diet. You also learnt about HbA1c.

This was a test that gave the doctor an idea of how well the sugar control was in your system over the last few months. The test actually measured the amount (in percentages) of glucose that stuck onto heamoglobin in the blood. Haemoglobin is the molecule that carries oxygen. The full name for HbA1c is glycosylated heamoglobin.

The ideal % to aim for is not totally clear and depends on your goals; normal is from 4 to 6% and some experts suggest keeping it as normal as you can (unless this requires having some low blood sugars that make you feel sick in which case a higher goal is fine) and not greater than 8%.

If it’s higher than that, then it means that the average amount of glucose in your blood stream over the last few weeks has been too high. In other words, this is a measure of long-term glucose control.

Adding long-acting insulin to your therapy will help to reduce the sugar in your blood, almost by any amount you need it – in this case it can help you probably get you HbA1c number to goal.

Taking long-acting insulin means learning how to use a device called an insulin pen. It has a very fine needle and you use this needle to inject a fixed dose of long-acting insulin once a day into a skin area. Although this seems like a difficult thing to do, people get used to it very quickly.

It does mean tho that you may have to check your blood sugar regularly using a monitor to measure the sugar in a drop of blood. People vary on how often they do this, depending on the advice they are given. Most people that use insulin are more bothered by the sugar check than by the insulin injection.

But there are some downsides to taking insulin. You are more likely to put on weight, particularly if you are not careful with your diet. In the first year on insulin, mostly because you are now controlling better your sugars (and you are not spilling sugar in the urine) you may gain up to 4 kilograms.

There is also a risk that you might have episodes where your sugar goes very low – to the point where you feel unwell and might need to have extra sugar and medical attention.

What do you think? We’d love to know what your thoughts are – please leave a response and ask others to do the same. We’ll summarise and post again when you are all done.

Glyn Elwyn and Victor Montori

There is increasing interest in interventions that can support patients who face difficult decisions and individuals who need to modify their behaviour to achieve better outcomes. Evidence for effectiveness is used to categorise patients care. Effective care is where evidence of benefit outweighs harm: patients should always receive this type of care, where indicated. Preference-sensitive care describes a situation where the evidence for the superiority of one treatment over another is either not available or does not allow differentiation; in this situation, there are two or more valid approaches, and the best choice depends on how individuals value the risks and benefits of treatments.

Preference-sensitive decisions are defined by equipoise: situations where options need to be deliberated. Moreover, where both healthcare professionals and patients agree that equipoise exists, situations may be regarded as having ‘dual equipoise‘. Such conditions are ideal for shared decision making. However, there are many situations in medicine where dual equipoise does not exist, where health professionals hold the view that scientific evidence for benefit strongly outweighs harm. This is often the case where people suffer from chronic conditions, and where behaviour change is recommended to improve outcomes.

However, some patients, are either ambivalent or find it difficult to sustain optimal behaviours, i.e., patients will be in varying degrees of equipoise. Therefore, situations where dual equipoise exists (or not) help to clarify the definitions of two classes of support, namely, decision and behaviour change support interventions. Decision support interventions help people think about choices they face; they describe where and why choice exists, in short, conditions of dual equipoise; they provide information about options, including, where reasonable, the option of taking no action.

These interventions help people to deliberate, independently or in collaboration with others, about options by considering relevant attributes; they support people to forecast how they might feel about short, intermediate, and long-term outcomes that have relevant consequences, in ways that help the process of constructing preferences and eventual decision making appropriate to their individual situation. Whereas, behavioural support interventions describe, justify, and recommend actions that, over time, lead to predictable outcomes over short, intermediate, and long-term timeframes, and that have relevant and important consequences for those who are considering behaviour change.

There has been a steady trend to involve patients in decision making tasks in clinical practice, part of a shift away from paternalism towards the concept of informed choice. An increased understanding of the uncertainties that exist in medicine, arising from a weak evidence base and, in addition, acceptance of the stochastic nature of outcomes at the individual level, have contributed to shifting the responsibility for decision making from physicians to patients. This has led to increasing use of decision support and communication methods, with the ultimate aim of improving decision making by patients.

Interest has therefore developed in attempting to define good decision making and in the development of measurement approaches. It is therefore prudent to pause and reflect whether decisions can be judged good or not, and, if so, how this goodness might be evaluated. Talya Miron-Shatz and I have proposed that decisions cannot be measured by reference to their outcomes and offer an alternative means of assessment, which emphasizes the deliberation process rather than a decision’s end results.

We propose decision making comprises a pre-decisional process and an act of decision determination and consider how this model of decision making serves to develop a new approach to evaluating what constitutes a good decision making process.

We therefore offer an alternative, which parses decisions into the pre-decisional deliberation process, the act of determination and post-decisional outcomes. Evaluating the deliberation process, we propose, should comprise of a subjective sufficiency of knowledge, as well as emotional processing and affective forecasting of the alternatives. This should form the basis for assessing a good decision. For more, see Health Expectations.

Spent time today with Paul Kinnersley shaping a research bid about consent. We’re concerned that consent for surgical operations is not as good as it could be. Yet there are few empirical studies of the actual consent dialogue so we have to be cautious. Nevertheless, the fact that consent is typically seen as an late-stage administrative necessity rather than a process that is initiated early and with opportunities to check that patients have understood the procedure they face and that, along the journey to the ‘consent’ point-of-no-return, an effort has been made to inform them of the procedure, the options (doing nothing for example), and the pros and cons and so on.

It’s going to be a challenge to research this area – given that there are many perverse incentives to maintain the view that consent is an form-completing administrative step. Toughest of all was trying to think what would an intervention look like… an intervention which would successfully and consistently modify the process. How would we measure success? Focus on process: assess if the clinician had improved communication? Or should we focus more on the patient? That they have become, or perceive themselves, to be more involved, more informed and more confident of making the correct decision? This issue of how to measure successful shared decision making never seems to be entirely settled.

We did agree on one thing. Consent is not the goal. Consent is an outcome. It should be the outcome of an informed choice process, which probably takes more than one conversation and which requires decision support of some sort.  We don’t think this is often achieved and yet its likely that patients would value this and that litigation rates would fall. That would be a significant cost reduction in most systems. Hope we get the chance to dig into this.

Shared decision making is an approach where clinicians and patients communicate together using the best available evidence when faced with the task of making decisions, where patients are supported to deliberate about the possible attributes and consequences of options, to arrive at informed preferences in making a determination about the best action and which respects patient autonomy, where this is desired, ethical and legal (Wikipedia).