Making decisions with patients Andy Hutchinson

Thought experiment Imagine an ‘ideal’ tablet No side-effects, doesn’t cost you anything (£), needs no prescription or medical supervision and can be started or stopped at any point without problem All you have to do is take one every day for the rest of your life Without saying anything aloud, write down how much extra lifespan this tablet would have to give you for you to be prepared to take it

Medicines disutility: what’s the trade-off? Fontana M, et al. (2014) Circulation 129: 2539-46 360 members of the general public in north-west London Equal number of men and women, 1% had a history of cardiovascular disease and 22% were currently taking regular medication of some kind. Mean age 38 years Median increase in lifespan required was 6 months (IQR 1 to 36 months) 34% people would take the medicine if it would increase their lifespan by <1 month 12% would take it only if it would increase their lifespan by 10 years or more The authors calculate that 99% of the population would gain <2 years extra lifespan by lifelong statin prophylaxis

What I’m going to cover Shared decision-making – what it is and what it isn’t Why should we do shared decision-making? Shared decision-making and NICE guidance Your thoughts

What is shared decision-making?

What is shared decision-making? Coulter A, Collins A, Kings Fund report 2011 A process in which clinicians and patients work together to select tests, treatments, management or support packages, based on clinical evidence and the patient’s informed preferences It includes providing 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 Wennberg D, Marr A, Lang L, et al (2010) NEJM 363: 1245–55 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 Coulter A, Collins A, Kings Fund report 2011 Clinician’s expertise Patient’s expertise Diagnosis Experience of illness Disease aetiology Social circumstances Prognosis Attitude to risk Treatment options Values Outcome probabilities Preferences

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/service user choice

Tasks in shared decision-making Elwyn G, et al. J Gen Intern Med 2012; 27:1361–7 The first task of shared decision-making is to ensure that individuals are not making decisions in the face of avoidable ignorance Healthcare professionals and patients generally overestimate the likely benefits of treatments and underestimate the risks Healthcare professionals may ‘misdiagnose’ the patient’s priorities The second task is to support people to deliberate about their options by exploring their reactions to information Some people feel surprised or unsettled by the offer of options and uncertainty about what might be best if all responsibility for decision making is transferred to patients they may feel abandoned

Why should we do SDM?

Consent and the Montgomery judgment Sokol D (2015) BMJ 350: h1481 Healthcare professionals must take reasonable care to ensure that the patient is aware of any material risks involved in any recommended treatment, and of any reasonable alternative or variant treatments The test of materiality is a risk to which a reasonable person in the patient’s position would be likely to attach significance or a risk that the healthcare professional knows — or should reasonably know — would probably be deemed of significance by this particular patient

SDM is recommended in professional guidance GMC consent guidance ‘…you must work in partnership with your patients to ensure good care… …maximise patients’ opportunities, and their ability, to make decisions for themselves…’ GPhC standards for pharmacy professionals ‘give the person all relevant information in a way they can understand, so they can make informed decisions and choices’ ‘ask questions and listen carefully to the responses, to understand the person’s needs and come to a shared decision about the care [you] provide’ NMC professional standards ‘encourage and empower people to share decisions about their treatment and care’

NICE quality standards for SDM (being refreshed) QS15: Patient experience in adult NHS services (February 2012) Quality statement 4: Patients have opportunities to discuss their health beliefs, concerns and preferences to inform their individualised care. Quality statement 5: Patients are supported by healthcare professionals to understand relevant treatment options, including benefits, risks and potential consequences. Quality statement 6: Patients are actively involved in shared decision making and supported by healthcare professionals to make fully informed choices about investigations, treatment and care that reflect what is important to them. Quality statement 7: Patients are made aware that they have the right to choose, accept or decline treatment and these decisions are respected and supported.

SDM, guidelines and NICE

NICE guideline on shared decision-making coming 2021 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 NICE guideline on shared decision-making coming 2021

NICE: Guidelines, not tramlines Every NICE guideline states, on its landing page: The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or service users It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian.

Supporting SDM in NICE guidelines Updated our guidelines process and methods manuals, to better support shared decision-making through evidence. Asking guideline developers to: identify preference-sensitive decision points - those where patients’ values and preferences are likely to be the primary determinant of choice of treatment publish a summary table of harms and benefits in the guideline to aid discussions about choice of treatments (clinician facing) NICE decision aids Additional tools to support shared decision-making (patient facing)

Summary tables in guidelines Brain tumours and brain metastases in adults: NG99, July 2018 Table 2: Factors to take into account when deciding on frequency of follow-up for people with glioma Possible advantages of more frequent follow-up Possible disadvantages of more frequent follow-up May identify recurrent disease earlier which may increase treatment options or enable treatment before people become symptomatic. There is no definite evidence that identifying recurrent disease early improves outcomes. May help provide information about the course of the illness and prognosis. May increase anxiety if changes of uncertain significance are detected on imaging. Some people can find more frequent imaging and hospital contact reassuring. Provides an opportunity to identify patient or carer needs (such as psychosocial support and late side effects of treatment). Some people can find more frequent imaging and hospital contact burdensome and disruptive – they feel their life revolves around their latest scan. There may be a financial cost from taking time off work and travelling to appointments. - More imaging and follow-up is resource intensive for the NHS.

Antipsychotics and dementia NG97, June 2018

Surgery for stress urinary incontinence or pelvic organ prolapse

Implementing SDM: Lessons from MAGIC Joseph-Williams N et al, BMJ 2017; 357: j1744 ‘We do it already’ ‘We don’t have the right tools’ ‘Patients don’t want shared decision-making’ ‘How can we measure it?’ ‘We have too many other demands and priorities’

Quick discussion How would you respond to a colleague who says We are doing this already or Patients don’t want shared decision-making, and anyway, quite a lot of them just aren’t well educated enough

Implementing SDM: Lessons from MAGIC Joseph-Williams N et al, BMJ 2017; 357: j1744 ‘We do it already’ How can we help you do it (even) better? ‘We don’t have the right tools’ Skills trump tools, and attitudes trump everything ‘Patients don’t want shared decision-making’ Many patients feel unable rather than unwilling to share in decision-making Does this statement really reflect reticence on behalf of health professionals? ‘How can we measure it?’ A challenge, but tools do exist ‘We have too many other demands and priorities’ A challenge to leaders and managers

Reflection Has this session challenged your previous thinking on this topic, or confirmed it? In what ways? What would ‘good care’ look like in your area of practice? What will have to change? What will you need to stop doing? What will you need to start doing? What will you need to do more of? What will you do first?