Shared Decision Making and Communication in Healthcare

Shared Decision Making

  • Shared decision making (SDM) involves patients and their values in healthcare decisions.
  • Effective communication between health professionals and patients (and families) is essential.
  • Patients need to understand the benefits, risks, and uncertainties of their healthcare options.
  • Many patients have limited health knowledge and struggle to find reliable information.
  • This chapter focuses on shared decision making, its facilitation, challenges, assessment, and communication of statistical information.
  • The goal is to promote collaboration with patients, discuss relevant evidence, and utilize helpful skills and resources.
  • Effective communication is crucial for patient-centered care but often overlooked.

Patient-Centred Care

  • Effective communication is vital for patient-centered care.
  • Patient-centered care emphasizes communication, partnerships, respect, choice, and empowerment.
  • It balances the 'paternalistic' model (where the health professional makes decisions) and the 'informed patient' model (where the patient makes all decisions).
  • Patient-centered care involves treating patients with dignity and providing sufficient information for informed choices.
  • Shared decision making is considered the pinnacle of patient-centered care.

Shared Decision Making

  • Shared decision making is a collaborative process where health professionals and patients jointly make healthcare decisions.
  • This involves discussing options, benefits, risks, and the patient's values and circumstances.
  • The level of patient and health professional involvement varies along a continuum.
  • The extent of involvement depends on individual preferences, the context, and other circumstances.
  • Shared decision making is most useful when evidence doesn't strongly favor a single option or for preference-sensitive decisions.
  • Preference-sensitive decisions involve uncertainty and differing benefits/harms, guided by patient preferences and values.

The Connection Between Shared Decision Making and Evidence-Based Practice

  • Evidence-based practice begins and ends with the patient
  • Health Professionals consider patient values and circumstances when making decisions.
  • Shared decision making provides a mechanism for incorporating patient values, preferences, and circumstances
  • Shared decision making happens at the intersection of patient-centered communication skills and evidence based practice
  • Through evidence-informed deliberations, patients construct informed preferences
  • Authentic evidence based practice cannot occur without shared decision making.
  • Shared decision making is an important route by which evidence is incorporated into clinical practice.
  • Truly informed decisions require discussions with patients to incorporate evidence
  • Health Professionals often have inaccurate expectations about the effect of health interventions and tend to overestimate the benefits and underestimate the harms

The Importance, and Benefits, of Shared Decision Making

  • Shared decision making is advocated by health organizations worldwide.
  • It's essential for evidence-based practice and is an ethical imperative.
  • Decision aids can help patients gain knowledge, have realistic expectations, and make choices reflecting their values.
  • It enhances communication and reduces decisional conflict.
  • Patients typically overestimate benefits and underestimate harms, which shared decision making can correct.
  • Informed patients tend to choose more conservative options, reducing inappropriate test/treatment use and overdiagnosis/over-treatment.

Steps in the Process of Shared Decision Making

  • Shared decision making is not just adding a step to a consultation or simply providing patient education.
  • It's not just giving a patient a decision aid or asking if they agree with a recommendation.
  • It is a process involving partnership and bidirectional communication.
  • The approach should be tailored to the patient, health professional, and situation.
  • Key elements: explaining the problem, inviting engagement, discussing options (benefits/harms), exploring preferences, clarifying understanding, collaborative deliberation, and making or deferring the decision.
  • Approaches to guide the process include "Team Talk," "Option Talk," and "Decision Talk."
  • Decision support tools can be integrated before, during, or after consultation.
  • NICE (UK) released a guideline on engaging patients, providing resources, and embedding shared decision making in healthcare culture.

Figure 14.1:

  • Highlights the interdependence of evidence-based practice and shared decision making as part of optimal care.

Example clinical scenario:

  • A general practitioner is seeing Emma, a two-and-a-half-year-old with a middle ear infection. Her mother is also present.
  • The doctor diagnoses acute otitis media.
  • The mother asks what can be done to help her.

Box 14.1 Presents an example of one approach to shared decision making

  1. Before you start

    • Explain the decision making process
    • Ask 'Would you like to be involved in discussing with me and deciding together about what the best next step is for you/your child?
    • Determine the degree to which your patient wants to be involved in decision making

  2. What will happen if we wait and watch?

    • Describe the nature of the problem/condition. Provide information about the natural history of the condition
    • Elicit the patient's expectations about management of the condition

  3. What are the options?

    • Trigger a discussion of the options and identification of those that the patient would like to hear more about
    • Provide a more detailed explanation about what each option is and the practicalities

  4. What are the benefits and harms of these options?

    • Discuss the benefits and harms of each option and the probability of each occurring or the likely size of the benefit or harms
    • Decision support tools and Simple visual graphics can be useful in helping to communicate the numbers
    • The discussion about harms should extend beyond discussion about the risk of side effects and include other impacts that the option could have on the patient

  5. How do the benefits and harms weigh up for you?

    • Elicit the patient’s preferences and working with them to clarify how each option may fit with their values, preferences, beliefs and goals

  6. Do you have enough information to make a choice?

    • Ask if the patient has additional questions and to determine the degree to which they understand the information you have provided to them.

Other general strategies

  • Attend to the whole of the patient’s problems and take account of their expectations, feelings and ideas.
  • Tailor the amount and pace of information to each patient’s needs and preferences.
  • Value the patient’s contributions—for example, the life experiences and values that they bring to the decision-making process.
  • Provide clear, honest and unbiased information. Be well informed about the most current evidence.
  • Be an active listener and provide a caring, respectful and empowering context in which the patient can be enabled to participate in decision making and feel comfortable asking questions.
  • Do not assume that your patient will make the same decisions as you, just because the evidence has been provided to them in a manner that they can understand.

Myths About Shared Decision Making

  • There are barriers and challenges to implementing shared decision making.
  • Systematic reviews identify barriers at the individual, organizational, and system levels.

Box 14.2 Highlights misconceptions about shared decision making and research findings that refute them:

  • Misconception: The consultation will be lengthened.
    • Research: Systematic reviews show little to no increase in consultation time.
  • Misconception: Patients will be unsupported when making healthcare decisions.
    • Research: Shared decision making explicitly involves clinicians and patients sharing the decision-making process.
  • Misconception: Not every patient wants to share in the decision-making process with their clinician.
    • Research: Surveys report a high desire for shared health decision making among patients.
  • Misconception: Most people are not able to participate in shared decision making.
    • Research: Shared decision making is comprised of behaviors that can be learned, with increasing studies demonstrating successful shared decision making.
  • Misconception: Shared decision making cannot be used with vulnerable people.
    • Research: Engaging vulnerable patients in shared decision making is crucial to decrease health inequities.
  • Misconception: 'I already do this.'
    • Research: Studies assessing shared decision making demonstrate low levels of patient-involving behaviors, indicating a need for practical skills training.
  • Misconception: Engaging patients in shared decision making will raise their anxiety level.
    • Research: The Cochrane review of decision aids refutes that SDM causes anxiety, but anxiety should not be confused with decisional conflict.

Challenges in Shared Decision Making

  • Challenges related to the availability of evidence: When there's insufficient or no evidence, help patients assess uncertainty against their values.
  • Multi-morbidity: Managing multiple chronic conditions complicates decision-making. Guidelines and tools often don't account for this.
  • Patients’ involvement in shared decision making: Not always possible in emergencies or with cognitively impaired patients. Respect patients' desired level of involvement.
  • What if my patient chooses to do the ‘wrong thing’? Accept that patients may make choices you disagree with, even with full information.

Legal Implications of Shared Decision Making

  • Shared decision making differs from informed consent, but its legal implications are evolving.
  • A UK Supreme Court ruling established that healthcare professionals should inform patients based on what a 'reasonable patient' deems important.
  • This shift encourages shared decision making as the preferred standard for informed consent.
  • Various healthcare organizations emphasize shared decision making in official documents.

Tools to Assess Shared Decision Making

  • Scales like the OPTION scale measure patient and health professional involvement in shared decision making.
  • Patient questionnaires assess satisfaction, decisional conflict, and perceived involvement in care.

Decision Support Tools

  • Decision support tools help integrate evidence into clinical decisions.
  • Patient decision aids facilitate shared decision making.
  • Other tools provide information or structure conversations.

Patient Decision Aids

  • Patient decision aids help patients make decisions about managing their health.
  • They provide information on options, benefits, harms, and values clarification exercises.
  • They come in various formats like pamphlets, videos, or online resources.
  • A key quality criterion is the inclusion of quantitative information.

Finding Decision Aids

  • Decision aids are available on various topics, mainly for medical practitioners.

  • Fewer aids exist for other health professionals, but this is changing.

  • Resources for locating decision aids include:

    • Ottawa Health Research Institute Inventory of decision aids.
    • Government agencies and health organizations globally.
    • MAGIC.
    • OPTION Grids (require subscription).

  • Challenges in creating decision aids include time and evidence updates.

Using Decision Aids

  • Ensure the decision aid is high quality, current, and relevant.
  • The International Patient Decision Aid Standards Collaboration provides quality criteria. As decision aids are added to the registry mentioned above, they are rated according to a shortened set of these criteria and the aid’s score for each criterion is displayed.
  • Decision aids are tools to facilitate shared decision making, but research gaps exist regarding their impact.
  • Since decision aids don't exist for all decisions, health professionals need to effectively communicate numerical and statistical information.

Beyond Decision Support Tools

  • Additional resources for patients include:
    • Cochrane Consumer Network.
    • MedlinePlus.
    • Choosing Wisely.

Communicating Numerical Information to Patients

  • Patients need benefit and risk information that is accurate, unbiased, relevant, and understandable.
  • Incorrectly presented statistics can lead to misinterpretations and poor decisions.
  • Differences exist between health professionals' and patients' understanding of probability and risk.
  • Health professionals view statistics as objective, while patients are influenced by emotions and media.
  • Patients personalize risk and may struggle to understand numbers without medical knowledge or experience.
  • Different types of numerical and statistical information need to be understood and communicated clearly.

Table 14.1:

  • Addresses the problem of probabilities and risk.
  • Explains that using natural frequencies when explaining this type of information can help

Types of Data that Health Professionals Use and How to Present Them to Patients

  • Probability:

    • The chance of an event occurring (values between 0 and 1).
    • Expressed as percentages (e.g., 0.5 = 50%).
    • Can be single or conditional.
    • Single Probability ex: There is a 20% chance that the patient will have a particular side effect if they receive a certain intervention.
    • Problem: A patient may interpret this as meaning that 20% of patients will have the side effect, or that all patients will have the side effect 20% of the time.
    • Conditional probability example: if a person has a disease, the probability that a screening test will be positive for the disease is 90%.

  • Risk of disease or harm:

    • The probability of developing a disease or harm over time.
    • Expressed as absolute or relative risk.
    • Absolute Risk refers to the incidence of the disease or event in the population
    • Relative risk is the ratio of two risks
    • Example:
      • If the relative risk is equal to 1, the risk in the exposed population is the same as in the unexposed population.
      • If the relative risk is greater than 1, the risk in the exposed population is greater than it is for those in the unexposed population.
      • If the relative risk is less than 1, the risk in the exposed population is less than it is for those in the unexposed population.

Box 14.3

  • Provides an example of relative risk

  • Relative risk by itself should not be presented to patients as it tends to magnify risk perceptions and is not well understood.

  • Absolute risk: natural frequencies (incidence) versus probabilities (chance)

    • Use natural frequencies (e.g., "20 out of every 100 people every year") or percentages when describing a single event
    • Having a reference group is important
    • Time-based risk formats should use consistent time frames.
    • Use percentatges rather than 'one in X'

  • Absolute risk reductions (or increases) versus relative risk reductions (or increases):

    • Present absolute risk reductions
    • Communicate the time frame and the comparison to baseline risk

  • Personalized risk estimates::

    • Take into account characteristics of the patient—for example, their age, gender, body weight and level of physical activity.
    • Reviews of their effectiveness have generally concluded that they are currently no better than more generalized risk estimates at aiding patient under- standing and influencing behavior change and often not trusted by patients or health professionals.

  • Number needed to treat or number needed to harm:

    • May lead to inaccurate perception of the treatment effect size

Communicating Uncertainty

  • Uncertainty is inherent in healthcare and evidence-based practice.
  • Communicate uncertainties to patients
  • Be transparent about knowledge limitations
  • A good resource for information is found in the article by Mendendorp.

Factors for Health Professionals to Consider When Presenting Numerical Information to Patients

  • Words versus numbers: verbal descriptors, such as ‘very common’, ‘common’, ‘uncommon’, ‘rare’) led to an overestimation of the probability of adverse events.
  • Framing

General Principles Regarding Communication Format

Verbal Information

Effective verbal communication:
  • Listed in Box 14.5:
    • Sit down with the patient, maintain eye contact, remove any distractions and give the patient your full attention.
    • Use effective communication skills such as active listening, gesturing, and responding to the patient’s non-verbal cues to facilitate communication.
    • Do not speak too quickly.
    • Use clear and simple language. Avoid jargon where possible. Explain any medical terminology used.
    • Where possible, use the same terms consistently throughout the discussion, rather than using a range of different terms that mean the same thing.
    • Present the most important information first.
    • Do not provide too much information at once. Present a few points and then pause to check that the patient under- stands.
    • Observe for indicators that the patient may not have understood, such as a look of confusion or a long pause before responding to a question.
    • Have the patient indicate their level of understanding. Having them repeat the main points of what you have said in their own words can often be more valuable than just asking, ‘Do you understand?’
      *Patients often forget what they are told. Supplement verbal communication with written materials.

Combination of Verbal and Written Information

  • Combining verbal and written information can enhance knowledge retention.
  • Recordings and written summaries can remind patients of consultation details and improve satisfaction.

Written Information

  • Written information needs to be readable and understandable.
  • Aim for a fifth- to sixth-grade reading level.
  • Assess readability using formulas like SMOG or Flesch Reading Ease.
  • Consider content, language, organization, layout, illustrations, and motivational features.

Choosing a Communication Format

  • Factors influencing format choice include:
    • Patient preference.
    • Literacy level (use tests like REALM or TOFHLA).
    • Cognitive ability and impairments.
    • Available resources.
    • Time constraints.
  • Essential factors for all health professionals include:
    • Assisting patients in understanding and using health information so that they participate in decision making.
    • General public gaining the skills and knowledge needed to be critical consumers of health information, make informed decisions and understand issues.
  • A summary of notes is provided at the end in the text.