Making decisions in practice Emma McClay Pharmacist Clinical Fellow, NICE © NICE 2018. All rights reserved. Subject to Notice of rights

Outline Introduction to decision making Shared decision making; why is it important to involve the patient in decisions about their healthcare Understanding values and how individual values affect the decisions they make Patient decision aids

Before we start Identify an important decision in your life that involved a choice between options Examples might include choosing somewhere to live while you’re at university, choosing what to study at university, booking a holiday, lifestyle change such as a new year diet Spend a minute jotting down/ thinking about: What you did to get to the decision that was right for you? What were the key components of your decision making process? What was important for you in helping make a choice? Discuss this with a partner for a few minutes

Decisions in healthcare Think back to the last time you had a discussion with a health professional, when you were the patient or a carer/ relative/ guardian Please think about How much effort was made to help you/the person understand your/their health issues? How much effort was made to listen to the things that matter most to you/the person about your/their health issues? How much effort was made to include what matters most to you/them in choosing what to do next? This is based on the CollaboRATE score questionnaire; see http://www.collaboratescore.org/

How much effort was made to help you/the person understand your/their health issues? A lot of effort (Green) Some effort (Yellow) Not much effort (Blue) Very little or no effort (Red) Colours relate to the voting cards This is based on the CollaboRATE score questionnaire; see http://www.collaboratescore.org/

How much effort was made to listen to the things that matter most to you/the person about your/ their health issues? A lot of effort (Green) Some effort (Yellow) Not much effort (Blue) Very little or no effort (Red) Colours relate to the voting cards This is based on the CollaboRATE score questionnaire; see http://www.collaboratescore.org/

How much effort was made to include what matters most to you/them in choosing what to do next? A lot of effort (Green) Some effort (Yellow) Not much effort (Blue) Very little or no effort (Red) Colours relate to the voting cards This is based on the CollaboRATE score questionnaire; see http://www.collaboratescore.org/

What is shared decision-making?

What is shared decision-making? Reviews across different disease areas report that between 30 and 50% of patients do not take or use the medicines prescribed for them. SDM includes provision of evidence-based information about options, outcomes and uncertainties decision support counselling to clarify options and preferences a system for recording and implementing patients’ informed preferences

Preference-sensitive decisions More than one clinically reasonable and cost-effective treatment or care option exists (including the possibility of no treatment) The choice between options involves the individual person concerned weighing up significant trade-offs according to their preferences and values

SDM – Two sources of expertise Clinician’s expertise Patient’s expertise Diagnosis Experience of illness Disease aetiology Social circumstances Prognosis Attitude to risk Treatment options Values Outcome probabilities Preferences MAKING SHARED DECISION-MAKING A REALITY: No decision about me, without me (Coulter A, Collins A, Kings Fund 2011) Pages 10 & 11: Shared decision-making may involve negotiation and compromise, but at its heart is the recognition that clinicians and patients bring different but equally important forms of expertise to the decision-making process. The clinician’s expertise is based on knowledge of the diagnosis, likely prognosis, treatment and support options and the range of possible outcomes based on population data; the patient knows about the impact of the condition on their daily life, and their personal attitude to risk, values and preferences. In shared decision-making the patient’s knowledge and preferences are taken into account, alongside the clinician’s expertise, and the decisions they reach in agreement with each other are informed by research evidence on effective treatment, care or support strategies.

What is shared decision-making not? SDM is not Just ‘being nice’ or just giving information Handing decisions entirely to the patient or service user It is a 2-way process that includes supporting the person to think what their priorities are and make a choice consistent with these A means of saving money Although some potential efficiencies have been noted A free-for-all in terms of patient choice

Understanding values

Which would you choose? Imagine a choice of several different treatment/intervention options: Option A: 1 year extra lifespan for sure (Red) Option C: a 5% chance of 10 years extra lifespan (Yellow) Option E: a 20% chance of 10 years extra lifespan (Blue) Option F: a 50% chance of 10 years extra lifespan (Green) Which would you choose for yourself? Imagine you are an 80 year old patient with multiple co- morbidities, frailty, pain from #hip?

Not just about the numbers Patient-centred care is not only a matter of the probability of outcomes ‘How likely is this to happen to me?’ Also relates to values ‘…and how would it affect me if it did?’ Not “what’s the matter with you?” but “what matters to you?” ?

RPS: medicines optimisation www.rpharms.com/resources/ultimate-guides-and-hubs/medicines-optimisation-hub Patient-centred approach at the core 1st principle: seek to understand the patient’s experience 4th principle: make medicines optimisation part of routine practice ?

Scenario 1 Imagine you are set to inherit £100k, but your evil distant cousin challenges the will. Your solicitor is confident you’ll win the case, but of course can’t be certain you won’t come away with nothing. She puts your chances of winning at about 95%. A claims management company offers to buy your claim for £90k. Would you chose… 95% chance to win £100k (Blue) £90k for sure? (Green)

Scenario 2 You are going to be sued, for £100k. Your defence is almost hopeless - your solicitor puts your chance of winning at no more than 5%. The plaintiff offers to settle for £90k. Would you settle (Yellow) or fight the case (Red)?

Scenario 3 Now it’s you doing the suing. You don’t have much chance of winning – about 5% - but if you win, you would get £100k. The defendant offers to settle for £6k. Would you accept this (Blue) or would you continue to fight the case (Green)?’

Scenario 4 You are set to inherit £100k from another relative. This will is also challenged by another cousin but the person challenging has a very weak case and your solicitor says that your chance of losing the £100k is no more than 5%. The plaintiff is willing to settle for £6k. Will you pay the money to get them off your back (Red), or fight the case? (Yellow)

Fourfold pattern Risk averse Risk seeking Risk seeking Risk averse Kahneman D (2011): Thinking, fast and slow Gains Losses High probability Certainty effect Scenario 1 95% chance to win £100k Or accept £90k for sure Scenario 2 95% chance to lose £100k Or pay £90k for sure Low probability Possibility effect Scenario 3 5% chance to win £100k Or accept £6k for sure Scenario 4 5% chance to lose £100k Or pay £6k for sure Risk averse Risk seeking You have to ignore legal costs, inconvenience, etc. in this exercise NB the ‘risk averse’ /’risk seeking’ boxes are animations that can appear at a suitable point. In the first box, the expected utility is £95k (0.95 x 100) but most people will be risk averse and choose the sure thing less than this. This explains why claims management companies succeed. In the second box, the expected (dis)utility is -£95k, but most people will be risk-seeking and not accept the sure loss less than this. In the third box the expected utility is £5k, but most people will reject the sure gain more than this. These two boxes explain why spurious claims are bought and weak cases are defended. In the last box, the expected (dis)utility is -£5k, but many people will chose the sure loss greater than this. This explains why rich people sell insurance and poorer people buy it. In every box, most people (but not everyone) would choose the option which is less financially advantageous to them than the calculated expected utility/disutility. Is this irrationality or being human? Risk seeking Risk averse

The evidence

NICE guidance on SDM Patient experience in adult NHS services (CG138, 2012) Enabling patients to actively participate in their care, tailoring healthcare services for each patient Service-user experience in adult mental health (CG136, 2011) Promoting active participation by service-users in treatment decisions and supporting self‑management Multimorbidity (NG56, 2016) Individualised care in discussion with the patient Medicines adherence (CG76, 2009) Patient involvement in decisions about medicines Medicines optimisation (NG5, 2015) Use of patient decision aids

Guidelines and real life Guidelines often only partly address the problems that individual people face Guidelines usually deal with single conditions, but multimorbidities are the norm They are largely based on RCTs that exclude many people to whom the guideline is likely to be applied The evidence never ‘tells you what to do’, it must be interpreted and applied – this requires judgements and assumptions, which may be tacit and unconscious Guideline development committees usually include single-subject area experts

Guidelines and real life Individual people may have different values and preferences from their clinician and from the people creating the guideline Guidelines may not cover some aspects of care that are important to a person, and cannot be expected to reflect every person’s complex individual circumstances They should inform decisions but should not lead to an ‘evidence tyranny’ in which people (clinicians, patients and managers/ commissioners) feel obliged to follow the guideline slavishly ‘Guidelines, not tramlines’ David Haslam, NICE conference 2015 (and many times before and since)

Patient Decision Aids

Patient decision aids Evidence-based tools designed to help patients make specific choices among healthcare options Supplement (rather than replace) clinicians' counselling about options Help patients clarify the value they place on the benefits and harms Developing attitudes and understanding is essential, but then clinicians need to consider their communication skills to engage patients in decision making, drawing on evidence based tools when appropriate.

Patient decision aids Health education tools Patient decision aids Help people to understand their diagnosis, treatment, and management in general terms Are not focused on decision points and so do not necessarily help them to participate in decision making Patient decision aids Make the decision being considered explicit Provide a detailed, specific, and personalised focus on options and outcomes

Parkinson’s disease NG71, July 2017

“skills trump tools, and attitudes trump skills” Patient decision aids “skills trump tools, and attitudes trump skills” http://www.bmj.com/content/357/bmj.j1744 (lessons learnt from SDM) There will never be decision support tools for every decision; nor will every patient find them acceptable or helpful. The skills to have different types of conversations with patients are paramount, with or without an available tool.

Further reading The Kings fund; Making Shared Decision-making A Reality Angela Coulter, Alf Collins Health foundation; Implementing shared decision making Thinking fast and slow; Daniel Kahneman Implementing shared decision making in the NHS: lessons from the MAGIC programme http://www.bmj.com/content/357/bmj.j1744