This year's theme for the World Health Organization's World Patient Safety Day (17 September) is Engaging Patients For Patient Safety, in recognition of the crucial role patients, families and caregivers play in the safety of health care. Active patient involvement, both in their own personal care as well as at a strategic organisational level, is vital to help improve healthcare provision, and the RCSEd is delighted to support this year's WPSD theme.
The RCSEd Patient Safety Group have produced a number of blogs as part of a campaign to mark World Patient Safety Day. In this blog Anna Paisley, RCSEd PSG Chair, discusses how shared decision making is vital to allow clinicians and patients to work together to make informed choices about best care for every individual.
Historical Approach
When deciding treatment options the central relationship between patient and healthcare provider is paramount.
There has been an historical underappreciation of the need for patient involvement in their care. In the past, medical paternalism with an acceptance that ‘doctor knows best’ pervaded practice. This is no longer acceptable. Societal expectations are changing and it is clear that patients want more information about their health condition and prefer to take an active role in decisions about their care. However, people don’t always feel able to speak to their doctor about their care options.
“Nothing about me without me” was a principle declared by the NHS some years ago.
One pivotal issue raised by the Montgomery Ruling was that “Patients should be told what they want to know, not what the doctor thinks they should be told” (BMJ 2017;357:j2224). This signified a real change in approach and the need to move away from the traditional ‘Doctor knows best’ paradigm.
Definition
Shared Decision Making (SDM) is a collaborative two-way process in which clinicians and patients work together to make decisions about care based on best available evidence and the patient’s informed preferences. It involves discussion about the options available, along with the potential outcomes, benefits, harms and uncertainties. Crucially, patient preferences, values and beliefs are taken into account to ensure that any decision made is the best one for the individual at that point in time. The weighting of different pieces of evidence, together with the potential benefits and harms will vary according to the preferences of people who will live with the consequences of decisions made, and the trade- offs they are willing to make. Importantly, SDM is in contrast to consent which covers the giving of information and discussion of risk and is the conclusion of a decision process.
It is helpful to consider decision making as a spectrum. At one end is medical paternalism – doctor/nurse knows best and patient does as told. At the other end lies informed choice where the clinician is a technician/source of information, providing data on risks, benefits and consequences of reasonable options, but the patient makes the decision on their own. SDM lies between these two extremes, where the decisions are made collaboratively between equal partners.
A good shared decision is therefore one where the patient is well informed about the options, understands what is important to them and a decision is made that is well informed and consistent with their values. A consultation should help a patient move from prior preferences to informed preferences.
People's interpretation of harms, benefits and consequences is fundamentally embedded in their values and priorities, which explains why people do not weigh these issues in the same way as others, or indeed in the same way as professionals. Decisions are based on values; it is important to note that patient values may differ from those of their clinician/health care team.
It is important to remember that there are two experts in any consultation. The clinician is an expert on diagnosis, disease aetiology, prognosis, treatment options and outcomes. On the other hand, the patient is an expert on their own experience of illness, social circumstances, attitude to risk, values, preferences and beliefs. Prior to any consultation patients are generally unaware of management options and outcomes; similarly, clinicians are unaware of the patient’s circumstances and preferences. It is important that this expertise is shared.
Principles of Good Shared Decision Making
Clinicians need to ensure that patients have all the information they need to make an informed choice. This information needs to be accurate, of good quality and provided in accessible formats that patients understand. It is also important to check that information has been understood in the way it was intended; our capacity to process information can be severely compromised when we are under stress. Health professionals tend to over- estimate people’s ability to assimilate information, especially if high volume or complex. Patients vary in how much and what sort of information they want, and finding out about their individual preference for knowledge is an important part of the process.
While there is concern that such interventions may take more time, previous studies show that informed decision-making does not, or only minimally, impacts the overall time of the consultation.
Shared decision-making interventions may need to be adapted to specific settings and populations. Health literacy varies enormously and some people may be unable to access online or other resources.
For clinicians to fully understand patients’ preferences and values, it is essential that they ask questions (e.g. What worries you most about this? What do you think of what I’ve just said? What would you like to know about the operation?), give patients time to respond and crucially listen to the answers.
People using healthcare services and their families must feel empowered to discuss their treatment fully with healthcare professionals. They need to be encouraged to ask questions and given time to do so. Patient willingness to ask some of these questions depends on the behaviour of clinicians and how busy they’re perceived to be.
Decision-making is never just a single event or activity but rather is distributed over a range of people and times or episodes. Patients need to be given the space required to perform the work of decision making and fully consider their options. Much of the work of decision making is done outside of the formal consultation: a ‘distributed decision’. Evidence supports offering interventions before any consultation; such ‘activation’ can improve the quality of discussion and make the decision-making process easier.
Interventions to support shared decision making should carry on after discussions with a healthcare professional. Furthermore, patients should be given the opportunity to have third party support, involving friends, family, carers and other supports available to them.
While it is entirely possible to come to a valid decision in a single encounter, there is often a need to use successive visits to allow for reflection and deliberation, either across time or with different professionals. Once a decision is made, there must be opportunities to review the decision.
The degree to which patients wish to actively engage in decisions will vary. Taking an active role in decisions about their health may not be wanted by every individual for every decision. Some patients feel anxious when told about the existence of alternative options and may worry about being abandoned to make decisions alone. Patients should be allowed to choose their extent of involvement. The offer of an active role needs to be explicit but there is no compulsion for the patient to shoulder the burden of every decision.
Benefits of Shared Decision Making
There is a growing body of evidence of the value of SDM for patients, clinicians and the wider health care system.
SDM respects patient autonomy, promotes patient engagement and empowers them to make decisions about their care that is right for them at that time. Patients have better reported communication with their healthcare professionals, improved knowledge of their condition and treatment options, more accurate risk perceptions, improved clarity about values, better adherence to the selected treatment and an overall better experience with improved satisfaction. They are also more likely to have greater confidence in decisions reached and less likely to regret treatment choices. This then increases adherence to treatment regimens and promotes health and well-being both during and following the decision-making process and treatment.
SDM also helps to promote evidence-based practice and reduces unwarranted healthcare practice variations, which may be based on surgeon preference, financial incentives or local practice patterns; quality of care may be increased as a result. SDM may foster the sustainability of the healthcare system by increasing patient ownership of their own health care.
Overuse of medical interventions is also reduced. When informed patients face surgery, they make more conservative decisions, often deferring or declining interventions. There is less demand for some screening procedures, such as prostatic specific antigen tests, and surgical procedures, such as hysterectomies and knee replacements.
Challenges to Shared Decision Making
Despite considerable interest in SDM and demonstration of clear benefits, SDM has not been taken up widely and most healthcare systems do not yet view this approach as the standard of care.
Studies have shown that the proportion of surgeons who fully discuss all elements of informed decision-making ranged from 0% to 9%. Surgeons routinely discuss components of informed consent with patients before surgery. However, they often fail to review elements unique to informed decision-making, such as the patients’ role in the decision, their daily life, uncertainty, understanding or patient preference.
Practical problems are often cited as barriers, such as insufficient time, poor fit into organisational routines or lack of appropriate tools. A more difficult challenge, however, is the attitude of many clinicians, who find it difficult to adopt this approach. This is especially true of those whose attitudes are shaped by training, mentorship, and role models who have historically paid less attention to the views of patients.
There are also situations in which decisions should not be shared. SDM is not appropriate where an individual has lost the capacity for making decisions. This could be transient and may vary over time, so repeated discissions may be needed. It may well be that others can act as proxies and represent the views of the individual. It is also clear that profound uncertainty and serious illness can lower decisional capacity, and place limits on SDM. The offer of more treatment, even if of limited benefit, is usually viewed optimistically by patients, although this optimism may be misplaced.
Healthcare professionals are not obliged to provide any treatment that in their clinical opinion is medically futile; neither can they provide access to treatments that are not available.
Although clinicians have a duty of care to patients, they also have obligations to their profession, to society and to science. In some instances, these other obligations take precedence and therefore limit the use of SDM. For example, the wellbeing of the broader population may override individual preferences e.g. when antibiotics are being requested for self-limiting illness and vaccine hesitancy. Clinicians report feeling a moral and professional obligation to recommend superior versus inferior options in such situations. On the flip side, for many options there may be little or no research available to allow useful comparison. Such discussions are made more complex when patients are exposed to media that promote novel healthcare developments. Cost-effectiveness and regulatory constraints also play a part. Some countries restrict access to therapies that do not meet agreed thresholds of cost-effectiveness or place restrictions to effective care on other grounds (i.e., abortion bans).
Implementing Shared Decision Making
Implementation requires a supportive clinical culture that facilitates patient engagement. Appropriate education and training is required to help clinicians communicate more thoroughly about decisions and elicit patients’ preferences. For clinicians to share decisions effectively, they also need a different attitude towards their role, they need a new set of skills, they need better and more adaptable tools, and they need to be provided with the structures and the environment where real personal communication and sharing become possible.
The Shared Decision-Making Collaborative, a group of organisations and individuals from the statutory, charitable, voluntary, patient and academic sectors, have released a consensus statement on implementation of shared decision making into everyday practice in UK health systems. They emphasise the importance of strong leadership, together with research, data collection, tool development and training, to encourage a shared decision-making culture across whole organisations.
Patient Decision Aids
Interventions to support patient decisions, often called decision aids, have been developed to provide evidence-based information to patients. They provide a structure to help patients clarify the decision that needs to be made, give information about options and invite patients to articulate their personal values and preferences. These tools are most appropriate when more than one course of action is feasible (clinical equipoise) and where the best decision depends on the patient’s reaction to the outcome probabilities.
To be of use, patient decision aids need to be quality assured, readily accessible, regularly updated and provided to people in formats they can use and understand. Some tools are short and can be used in consultations; others are longer, such as DVDs, booklets, or on-line tools that patients use before consulting a clinician.
An increasing array of high-quality patient decision aids, many of which are free, are now available to support shared decision making for many conditions. These have been provided by many institutions, including the Ottawa Hospital Research Institute, the Informed Medical Decisions Centre in Boston and the Dartmouth Centre for Shared Decision Making.
Although these initiatives are important, the tools are not sufficient on their own. Clinicians need to be adequately trained in their use. Furthermore, there will never be a patient decision aid available to support every discussion, and clinicians will need to have the skills to engage people in making shared decisions irrespective of whether decision aids are available.
National Guidance
The GMC highlight in their guidance for doctors that all patients have the right to be involved in decisions about their treatment and care and to make informed decisions if they can. They note that serious harm can result if patients are not listened to, or if they are not given the information they need - and time and support to understand it - so they can make informed decisions about their care. They describe seven important principles that should be followed in good shared decision making:
NICE have produced guidance to help increase the use of shared decision making in day to day clinical practice in all healthcare settings. It includes recommendations on training, communicating risks, benefits and consequences, using decision aids, and how to embed shared decision making in organisational culture and practices.
The Academy of Medical Royal Colleges Choosing Wisely Programme promotes the use of SDM using BRAN to encourage patients to get the best from consultations by asking four key questions.
The Centre for Peri-Operative Care (CPOC) also provide excellent information to help patients and their relatives navigate the process.
The Scottish Government have introduced the Realistic Medicine programme to help health care staff work with patients to provide care that is right for each individual.
A recent excellent workshop explores how Cochrane evidence can be used by all stakeholders when making shared treatment decisions, and whether there is a difference between the ideal of SDM and the reality, and what can be done to bridge the gap
The OSIRIS programme, led by Barts healthcare NHS Trust & Queen Mary University London, is a major project currently being undertaken to understand and improve SDM for patients at high risk of medical complications as they face major surgery.
Summary
There is a need to embed shared decision making into clinician’s everyday practice. We must create the conditions that facilitate more meaningful conversations between patients and their healthcare professionals; that help them make informed choices about their care options, based on what matters most to them. This involves trust, the provision of information in a way that allows understanding and time for reflection, so that people feel they have support in making these decisions, when this is their preference. Consider registering for the RCSEd’s ICONS Workshop to learn more about this important area.
RCSEd Informed Consent: Sharing the Decision (ICONS) Course
The RCSEd has been running ICONS workshops for a number of years to help train the surgical team in the skills required for effective shared decision-making and consent. This innovative, educational initiative was developed as a direct and constructive response to the communication inadequacies exposed by the Montgomery case, and subsequent legislation. While it is not difficult to give ‘more information’ it is harder for surgeons and patients to achieve a decision partnership.
The ICONS workshop content has been informed by internationally recognised experts in Shared Decision Making, by consensus among senior practising surgeons, by patients and by professional experts in risk management and risk communication.
Delegates on the ICONS workshops acquire skills and knowledge to implement best practice in sharing the complex decisions surrounding informed consent. By participating in a workshop, they also contribute to the development of resources for future training in the important area of informed consent.