How to provide patients with the right information to make informed decisions
A tailored approach can help pharmacists support patients to make better treatment choices, resulting in more successful outcomes.
Source: MAG / The Salvadore
There are few decisions in medicine where there is only one unequivocally correct answer for everyone. At most clinical decision points, there are several possibilities that could be taken into account to alleviate the patient’s problem or concern, including different treatments (e.g. different drugs), support packages, preventive strategies or lifestyle changes, in addition to the ‘no active treatment’ option, advice and reassurance.
Several factors must be considered to determine the most appropriate treatment for a patient, which include:
- The patient’s general state of health;
- The patient’s diagnosis, prognosis and comorbidities;
- The likely effectiveness of the respective treatment options, their risks and side effects;
- The patient’s health beliefs, goals and preferences;
- The patient’s capacity to manage the treatment and its consequences.
Shared decision-making is a collaborative process in which healthcare professionals and patients work together to select tests, treatments, management or support packages, with all decisions being based on clinical evidence and the patient’s informed preferences,,,. It is especially important to encourage patient participation in relation to medicines, as medicine-taking relies on the patient to understand, accept and administer the treatment.
Pharmacists and healthcare professionals need excellent communication and listening skills in order to inform patients, check their understanding, elicit their goals and help them clarify their preferences, together with a commitment to reaching decisions collaboratively. This article covers how pharmacists and healthcare professionals can support patients in reaching informed decisions about their care.
Providing patients with the required information
The provision of clear, evidence-based information about options and likely outcomes is an essential basis for shared decision-making (see Box 1).
Box 1: What patients need to know
- What are the benefits?
- What are the risks?
- What are the alternatives?
- Doing nothing
- What will happen if I do nothing?
One way to do this is to use decision aids that have been designed to prepare patients for participation shared decisions with healthcare professionals (to supplement, not supplant, clinical discussions), and provide information on treatment or management options and often include tools to help users clarify their preferences. Unlike clinical guidelines that are often derived from the same evidence base, patient decision aids do not tell patients what to do and do not make recommendations. They are preparation tools or conversation aids designed to support collaborative decision-making. Patient decision aids come in a variety of formats, from simple one-page sheets designed to prompt discussion within consultations to more detailed information supplied via DVDs, computer programmes or interactive websites for viewing at home prior to making a decision (see examples of decision aids below).
Their effectiveness has been extensively researched — a Cochrane systematic review concluded that use of patient decision aids leads to improvement in patients’ knowledge and their understanding of risks, and helps them be clear about what matters most to them, which in turn results in more appropriate treatment.
Studies have also found that:
- Numbers (or percentages) with graphical illustrations are better understood than words alone;
- Population-based natural frequencies are preferable to relative risks;
- Bias can be avoided by using both positive and negative framing;
- Summary tables with specific time frames and consistent denominators aid understanding,.
It is crucial that patients are given well-designed, reliable, balanced, up-to-date information to help them make their decision. An international set of agreed standards has been developed to assure the quality of patient decision aids and associated guidance is available to help decision-aid developers produce trustworthy tools,,,. The design of these tools should take account of guidance on how to communicate risks and probabilities clearly.
Examples of decision aids
Decision aids are becoming more widely available and a growing number have been specially designed for use in the UK, including those developed by:
Some of these tools cover relatively straightforward choices, such as whether or not to take medication for a specific problem, while others cover more complex topics where the options include a wide range of possibilities. For example, NICE has produced a series of decision aids to help patients decide whether to start or stop taking particular drugs for specific conditions (e.g. ). The decision aids use graphics and text to explain the pros and cons, including the likely reduction in risk of fracture for individuals in specific groups and the possible adverse effects of taking this medication. Other examples from NICE include tools to guide decisions about , and .
Some decision aids cover the full range of management possibilities for a single condition. For example, people with osteoarthritis of the knee may choose between lifestyle changes (losing weight and/or doing more exercise); physical management (physiotherapy and/or walking aids); pain relief (tablets or injections); complementary therapies (transcutaneous electrical nerve stimulation, acupuncture or nutritional supplements); or surgery (total or partial knee replacement or osteotomy). These more complex tools summarise evidence on the benefits, harms and uncertainties of each of the options, including guidance on how to weigh these up to determine the most appropriate and acceptable treatment,.
When shared decision-making is appropriate
Shared decision-making can be used in most clinical settings, although it may not be appropriate in emergency care, where quick decisions must be made and there is usually little time for deliberation.
Box 2 describes the impact of using a decision aid in patients experiencing leg cramps taking quinine.
Box 2: Halving quinine prescribing though shared decision-making
Pharmacists can encourage patients to review medicines that they may have been taking for a long time. A report by the Health Foundation describes a project in which a community pharmacist practitioner worked with GPs to review prescriptions for nocturnal leg cramps. Overall, 800 patients in a single practice group who were taking quinine sulphate were sent a outlining evidence on the effectiveness of this treatment and other options for easing leg cramps. Patients were invited to the surgery if they wanted to discuss their medication. Many of them did so, leading to a reduction in the amount of quinine sulphate dispensed by the pharmacy. The average number of quinine sulphate items dispensed was 753 between quarters one and two of 2010/2011. This dropped to 652 and 460 in quarters three and four of 2011/2012, respectively, and fell to 302 in quarter one of 2012/2013.
Challenges with communicating medical information to patients
Patients with low confidence
Some patients are taken aback when asked about their treatment preferences; they go to a consultation assuming it is the healthcare professional’s job to decide what to do. It is not uncommon for a patient to ask the healthcare professional what they would do in similar circumstances. Instead of leaping in with advice, pharmacists and healthcare professionals should explain to the patient that their goals and preferences are important for making the right decision and to encourage them to discuss their ideas and concerns. The patient’s reluctance may stem from a lack of confidence owing to a long experience of paternalistic decision-making in which they were not expected to play a role, rather than a lack of interest or unwillingness to engage.
The temptation for healthcare professionals faced with someone who has little knowledge of health matters and is not confident about asserting their views is to make the decision for them, reinforcing their passive role. This is a mistake because people who are more actively involved in their health tend to have better health outcomes, so the aim should be to help those individuals who are less involved understand their important role in protecting and improving their health. The good news is that these people can become more engaged, given the right support, and they gain even more from a shared approach than those with higher levels of health literacy.
Patients who lack capacity
If a patient lacks the mental capacity to make decisions on their own, it is often possible to involve others who know them well enough (including relatives or carers) to help make decisions. The General Medical Council’s recommends starting from the presumption that the patient does have the capacity to express their views accurately and doing everything possible to maximise their capacity to participate in decisions, instead of making assumptions based on observation alone.
Patients with complex care needs
Informing and involving patients is even more difficult when they have multiple long-term conditions for which they are taking several different medicines. Pharmacists and healthcare professionals undertaking medicines optimisation reviews are expected to apply the principles of shared decision-making, discussing the best available evidence and taking account of individual needs, as well as preferences and values. However, the NICE guidance is vague on how this should be achieved and what information should be provided.
It may not be feasible to assemble decision aids for each condition or treatment, or to expect the patient to absorb multiple facts and complex risk-benefit trade-offs. In this situation, it is important to identify what the patient is most concerned about and what is most important to them, and to focus on their priorities using simple heuristics to help them decide how to rationalise their medicines use (see Box 3 for questions that can support deliberation). It may help to use a generic decision aid designed to support any type of decision, such as the Ottawa Personal Decision Guide or the Instrument for Patient Capacity Assessment discussion tool to identify problems faced in managing their treatment. A personalised approach is needed, focusing on maximising wellbeing and minimising treatment burden.
Box 3: Example questions to support deliberation
- What do you understand about your condition?
- What do you want from the treatment or self-management support options?
- What do you hope you will be able to achieve if the treatment is successful?
- What do you know about the benefits of the possible treatments?
- What do you know about the risks of the possible treatments?
- What concerns do you have?
- What questions do you have?
- Are there any other important people you want to talk to before making this decision?
Healthcare professionals are often concerned that explaining treatment options, including benefits, harms and uncertainties, will take a long time to do, making it unfeasible in busy clinics. Despite this, studies have shown that when well-designed decision aids are used, the process does not take much longer than a normal consultation. And it may save time in the longer term because patients gain a better understanding of their medicines and make more appropriate choices, reducing the need for subsequent consultations. The Cochrane systematic review of patient decision aid trials found that, on average, consultation lengths were increased by no more than two minutes.
Decisions you disagree with
Shared decision-making does not mean simply providing information and expecting patients to make decisions alone, nor does it absolve healthcare professionals from their responsibility to provide the best possible care. Instead, it is a collaborative process — a conversation or series of conversations aimed at reaching agreement on the best course of action for the individual.
Unfortunately, it may not always be possible to reach such an agreement. Patients do not always follow medical advice, for example, by not taking their medicines as instructed or by failing to make recommended lifestyle changes. Healthcare professionals retain their duty to warn against risky behaviours or harmful treatments and there is no obligation on them to provide unreliable or harmful treatments in response to patients’ unreasonable requests. However, shared decision-making does require healthcare professionals to make reasonable attempts to understand the patient’s viewpoint and to resist the temptation to impose their own views, unless they have good grounds to fear for the patient’s safety.
Flexibility and responsiveness are key, requiring healthcare professionals to adapt their style to the person with whom they are interacting. Findings from clinical trials are often derived from highly selected populations, usually with single conditions and no comorbidities, and presented as averages. Such evidence can be a useful guide to best practice but it cannot predict with any certainty how an individual will respond. One size cannot fit all eventualities. That is why the personalised approach embodied in shared decision-making is seen as a promising way forward.
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Citation: The Salvadore DOI: 10.1211/PJ.2018.20204936
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