Shared decision-making in medicine
Shared decision-making in medicine (SDM) is a process in which both the patient and physician contribute to the medical decision-making process. Health care providers explain treatments and alternatives to patients to provide the necessary resources for patients to choose the treatment option that best aligns with their unique cultural and personal beliefs.
In contrast to SDM, the traditional biomedical care system placed physicians in a position of authority with patients playing a passive role in care. Physicians instructed patients about what to do, and the patients often followed the physicians' advice.
One of the first instances where the term shared decision-making was employed was in a report entitled the "President's Commission for the Study of Ethical Problems in Medicine and Biomedical Research." This work built on the increasing interest in patient-centredness and an increasing emphasis on recognising patient autonomy in health care interactions since the 1970s. Some would even claim that a general paradigm shift occurred in the Nineteen-Eighties in which patients became more involved in medical decision-making than before. For example, a recent review of 115 patient participation studies found that the majority of respondents preferred to participate in medical decision-making in only 50% of studies prior to 2000, while 71% of studies after 2000 found a majority of respondents who wanted to participate.
Charles et al. described a set of principles for shared decision-making, stating “that at least two participants, the clinician and patient be involved; that both parties share information; that both parties take steps to build a consensus about the preferred treatment; and that an agreement is reached on the treatment to implement". These principles rely on eventually arriving at an agreement, but this final principle is not fully accepted by others in the field. The view that it is acceptable to agree to disagree is also regarded as an acceptable outcome of shared decision-making.
Patient autonomy and informed consent
The basic premise of SDM is patient autonomy. The model recognizes that patients have personal values that influence the interpretation of risks and benefits differently from a physician. Frequently, there is more than one option, with no clear choice of which option is best; that occurs when the decision at hand is about a preference-sensitive condition. In certain situations, for example, the physician's point of view may differ from the decision that aligns most with the patient's values, judgments, and opinions. A physician may also be driven by financial incentives such as fee-for-service. Thus, informed consent is at the core of shared decision-making. Without fully understanding the advantages and disadvantages of all treatment options, patients cannot engage in making decisions based on their personal values and beliefs.
Factors that predict participation
There are certain patient characteristics that influence the extent of involvement. Research shows that female patients who are younger and more educated and have a less severe illness than other patients are more likely to participate in medical decisions. That is, an increase in age leads to a decrease in desire to participate, while higher levels of education increase participation levels. However, other research has offered conflicting evidence for the effect of age on level of participation. One study found that age did not inversely relate to participation levels. In addition, numeracy levels may play an important role in SDM. Recent research has shown that, in general, low-numeracy individuals in both Germany and the United States prefer to play a more passive role than their high-numeracy counterparts. That is, individuals who are not as fluent with numbers and statistics tended to let their physicians make medical decisions without much input from the patients. In general, however, Americans play a more active role in the physician-patient relationship, by performing activities like asking follow-up questions and researching treatment options, than do Germans. Furthermore, research shows that race plays an important role in whether a patient participates. Though black patients report that they participate less in shared decision-making than white patients, studies have shown that black patients desire to participate just as much as their white counterparts and are more likely to report initiating conversation about their health care with their physicians.
Individuals who place a higher value on their health are more likely to play a passive role when it comes to medical decision-making than those who placed a lower value on health. Researchers Arora and McHorney posit that finding may be the result of their apprehension when it comes to health-related concerns among those who place a high value on health, leading to a tendency to let an expert, rather than themselves, make important medical decisions.
There is some evidence that giving patients real-time, unfettered access to their own medical records increases their understanding of their health and improves their ability to take care of themselves.
Elwyn et al. described a set of competences for shared decision-making, which are composed of the steps of defining the problem which requires a decision, the portrayal of equipoise and the uncertainty about the best course of action, thereby leading to the requirement to provide information about the attributes of available options and support a deliberation process. An assessment scale to measure the extent to which clinicians involve patients in decision-making has been developed and translated into Dutch, Chinese, French, German, Spanish and Italian. A talk model has been recently proposed, composed of three different phases: team, option and decision talk. In the first of these phases, clinicians' work to create a supportive relationship with the patient as they introduce the idea of recognizing the existence of alternative actions (options) - this is to form a team with the patient and their family. In the second phase, the work is to introduce the options in a clear way, describing and explaining the probabilities of benefits and harms that might be likely - this is option talk. In the last phase, patients' preferences are constructed, elicited and integrated - this is decision talk. A shorter 5-item version of the Observer OPTION measure has been published based on this model.
The ecological model of SDM, proposed by Cegala and based on previous research by Street, includes four main components of SDM. The first is termed information seeking. Assessment for this component includes the number of health-related questions the patient asks along with the number of times the patient asks for the physician to verify information. Examples of information verifying may include asking a physician to repeat information or summarizing what the physician said in order to ensure that the patient understood the information. The second facet of SDM, as proposed by this model, is assertive utterances, which may include making recommendations to physicians, expressing an opinion or preference, or expressing disagreement. The third component of the model is information provision of symptoms, medical history and psychosocial factors, with or without prompting from the physician. The final component of SDM is expressions of concern, including affective responses such as anxiety, worry, or negative feelings. The extent of participation can be determined based on how often a patient displays these four overarching behaviors.
SDM increasingly relies on the use of decision aids in assisting the patients in choosing the best treatment option. Patient decision aids, which may include leaflets, video or audio tapes, or interactive media, supplement the patient-physician relationship and assist patients in making medical decisions that most closely aligns with their values and preferences. Recently, interactive software or internet websites have helped bridge the divide between physician and patients. Recent research has shown that the use of decision aids may increase patients' trust in physicians, thereby facilitating the shared decision-making process.
The International Patient Decision Aid Standards (IPDAS) Collaboration, a group of researchers led by professors Annette O'Connor in Canada and Glyn Elwyn in England, has published a set of standards, representing the efforts of more than 100 participants from 14 countries around the world to will help determine the quality of patient decision aids. The report determined that there are certain components of an aid, such as providing information about options, using patient stories, and disclosing conflicts of interest, that will assist patients and health practitioners to assess the content, development process, and effectiveness of decision aids.
With funding bodies emphasizing knowledge translation, i.e. making sure that scientific research results in changes in practice, researchers in shared decision-making have focussed on implementing SDM, or making it happen. Based on studies of barriers to shared decision-making as perceived by health professionals and patients, many researchers are developing sound, theory-based training programs and decision aids, and evaluating their results. Canada has established a research chair that focusses on practical methods for promoting and implementing shared decision-making across the healthcare continuum.
Although patients who are involved in decision-making about their health have better outcomes, healthcare professionals rarely involve them in these decisions. A recently updated Cochrane review has synthesized the body of evidence about different interventions that can be used to help healthcare professionals adopt practices to better involve their patients in the process of making decisions about their health. In this review of studies testing interventions to help healthcare professionals adopt practices to better involve their patients in the process of making decisions, five studies were identified. This review found that educational meetings, giving healthcare professionals feedback, giving healthcare professionals learning materials, and using patient decision aids are some techniques that have been tried and might be helpful. However, the review could not determine from the available studies which of these were best. The review makes some suggestions for how research studies could better evaluate healthcare professionals involving patients in the process of making decisions about their health so that we can understand this better in the future. There is also a need for greater conceptual clarity. Involving patients in decisions is by definition a process that could occur over time and in many encounters. Much of the literature seems to assume that achieving shared decision-making is a matter of giving healthcare professionals enough information.
Canada, Germany and the U.S.
Training health professionals in shared decision-making attracts the attention of policy makers when it shows potential for addressing chronic problems in healthcare systems such as the overuse of drugs or screening tests. One such program, designed for primary care physicians in Quebec, Canada, showed that shared decision-making can reduce use of antibiotics for acute respiratory problems (ear aches, sinusitis, bronchitis, etc.) which are often caused by viruses and do not respond to antibiotics.
While some medical schools (e.g. in Germany, the UK and Canada) already include such training programs in their residency programs, there is increasing demand for shared decision-making training programs by medical schools and providers of continuing professional education (such as medical licensing bodies). A 2012 inventory of existing programs (regularly updated) showed that they vary widely in what they deliver and are rarely evaluated. These observations led to an international effort to list the skills necessary for practising shared decision-making and to prioritize them. The effort generated debate among researchers around what core competencies should be taught and how they should be measured, which brought the discussion back to basic questions: what exactly is shared decision-making, do decisions always have to be shared, and how can it be accurately evaluated?
Harvey Fineberg, Head of the US Institute of Medicine, has suggested that shared decision-making should be shaped by the particular needs and preferences of the patient, which may be to call on a physician to assume full responsibility for decisions or, at the other extreme, to be supported and guided by the physician to make completely autonomous decisions. This suggests that, just as with interventions, which need to match the patient's style and preferences, patient's preferences for degree of involvement also need to be taken into account and respected.
The aim of the Right Care Shared Decision-Making Programme is to embed shared decision-making in NHS care. This is part of the wider ambition to promote patient centred care, to increase patient choice, autonomy and involvement in clinical decision-making and make “no decision about me, without me” a reality. The Shared Decision-Making programme is part of the Quality Improvement Productivity and Prevention (QIPP) Right Care programme. In 2012, the programme entered an exciting new phase and, through three workstreams, is aiming to embed the practice of shared decision-making among patients and those who support them, and among health professionals and their educators. One of the components of the National Programme is the work of the Advancing Quality Alliance (AQuA) - who are tasked with creating a receptive culture for shared decision-making with patients and health professionals.
Several researchers in this field have designed scales for measuring to what extent shared decision-making takes place in the clinical encounter and its effects, from the perspective of patients or healthcare professionals or both, or from the perspective of outside observers. The purpose of these scales is to explore what happens in shared decision-making and how much it happens, with the goal of applying this knowledge to incite healthcare professionals to practise it. Based on these scales, simple tools are being designed to help physicians better understand their patients’ decision needs. One such tool that has been validated, SURE, is a quick questionnaire for finding out in busy clinics which patients are not comfortable about the treatment decision (decisional conflict). SURE is based on O’Connor’s Decisional Conflict Scale which is commonly used to evaluate patient decision aids. The four yes-or-no questions are about being Sure, Understanding the information, the Risk-benefit ratio, and sources of advice and Encouragement.
Another proposed measure explores the following three components of patient-centered behavior: physician's general ability to conceptualize both illness and disease in relation to a patient's life; physicians exploring the full context of illness in the patient's life setting (like work, social supports, family) and personal development; physicians' ability to reach common ground with the participants in which the treatment goals and management strategies, nature of the problems and priorities, and roles of both the physician and patient are addressed.
Earlier research demonstrated that increased patient-centered behavior by physicians led to greater compliance of patients' at-home medical care, such as taking pills. Generally, physicians engage in more patient-centered communication when they speaking with high participation patients rather than with low participation patients. However, when a patient sees a physician of the same race, the patient perceives that physician as involving the patient more than a physician of a different race.
Researchers in shared decision-making are increasingly taking account of the fact that involvement in making healthcare decisions is not always limited to one patient and one healthcare professional in a clinical setting. Often more than one healthcare professional is involved in a decision, such as professional teams involved in caring for an elderly person who may have several health problems at once. Some researchers, for example, are focussing on how interprofessional teams might practise shared decision-making among themselves and with their patients. Researchers are also expanding the definition of shared decision-making to include an ill person’s spouse, family caregivers or friends, especially if they are responsible for giving the person medicine, transporting them or paying the bills. Decisions that ignore them may not be based on realistic options or may not be followed through. Shared decision-making is also now being applied in areas of healthcare that have wider social implications, such as decisions faced by the frail elderly and their caregivers about staying at home or moving into care facilities.
Patient empowerment enables patients to take an active role in the decisions made about their own healthcare. Patient empowerment requires patients to take responsibility for aspects of care such as respectful communications with their doctors and other providers, patient safety, evidence gathering, smart consumerism, shared decision-making, and more.
The EMPAThiE study defined an empowered patient as a patient who "… has control over the management of their condition in daily life. They take action to improve the quality of their life and have the necessary knowledge, skills, attitudes and self-awareness to adjust their behavior and to work in partnership with others where necessary, to achieve optimal well-being."
Various countries have passed laws and run multiple campaigns to raise awareness of these matters. For example, a law enacted in France on 2 March 2002 aimed for a "health democracy" in which patients' rights and responsibilities were revisited, and it gave patients an opportunity to take control of their health. Similar laws have been passed in countries such as Croatia, Hungary, and the Catalonia. The same year, Britain passed a penalty charge to remind patients of their responsibility in healthcare.
In 2009, British and Australian campaigns were launched to highlight the costs of unhealthy lifestyles and the need for a culture of responsibility. The European Union took this issue seriously and since 2005, has regularly reviewed the question of patients' rights by various policies with the cooperation of the World Health Organization. Various medical associations have also followed the path of patients' empowerment by bills of rights or declarations.
A recent study found that individuals who participate in shared decision-making are more likely to feel secure and may feel a stronger sense of commitment to recover. Also, research has shown that SDM leads to higher judgments of the quality of care. Furthermore, SDM leads to greater self-efficacy in patients, which in turn, leads to better health outcomes. When a patient participates more in the decision-making process, the frequency of self-management behaviors increases, as well. Self-management behaviors fall into three broad categories: health behaviors (like exercise); consumeristic behaviors (like reading the risks about a new treatment); and disease-specific management strategies. In a similar vein, a recent study found that among patients with diabetes, the more an individual remembers information given by a physician, the more the patient participated in self-care behaviors at home.
Providing patients with personal coronary risk information may assist patients in improving cholesterol levels. Such findings are most likely attributed to an improvement in self-management techniques in response to the personalized feedback from physicians. Additionally, the findings of another study indicate that the use of a cardiovascular risk calculator led to increased patient participation and satisfaction with the treatment decision process and outcome and reduced decisional regret.
Some patients do not find the SDM model to be the best approach to care. A qualitative study found that barriers to SDM may include a patient's desire to avoid participation from lack of perceived control over the situation, a medical professional's inability to make an emotional connection with the patient, an interaction with an overconfident and overly-assertive medical professional, and general structural deficits in care that may undermine opportunities for a patient to exert control over the situation. Furthermore, dispositional factors may play an important role in the extent to which a patient feels comfortable with a participating in medical decisions. Individuals who exhibit high trait anxiety, for example, prefer not to participate in medical decision-making.
For those who do participate in decision-making, there are potential disadvantages. As patients take part in the decision process, physicians may communicate uncertain or unknown evidence about the risks and benefits of a decision. The communication of scientific uncertainty may lead to decision dissatisfaction. Critics of the SDM model assert that physicians who choose not to question and challenge the assumptions of patients do a medical disservice to patients, who are overall less knowledgeable and skilled than the physician. Physicians who encourage patient participation can help the patient make a decision that is aligned with the patients' values and preferences.
Many researchers and practitioners in this field meet every two years at the International Shared Decision Making (ISDM) Conference, which have been held at Oxford in 2001, Swansea in 2003, Ottawa in 2005, Freiburg in 2007, Boston in 2009, Maastricht in 2011, Lima, Peru in 2013, and Sydney, Australia, in 2015. Shared decision-making is also closely associated with the use of decision support interventions, also known as decision aids. Much of the research and implementation studies to date are contained in the book Shared Decision Making in Healthcare: Evidence-based Patient Choice, 2nd ed.
On December 12–17, 2010 the Salzburg Global Seminar began a series with a session focused on "The Greatest Untapped Resource in Healthcare? Informing and Involving Patients in Decisions about Their Medical Care." Powerful conclusions emerged among the 58 participants from 18 countries: not only is it ethically right that patients should be involved more closely in decisions about their own medical care and the risks involved, it is practical – through careful presentation of information and the use of decision aids/pathways – and it brings down costs. Unwarranted practice variations – where one area may have many more interventions than another, but with no better outcomes – are reduced, sometimes dramatically.
The Agency for Healthcare Research and Quality (AHRQ) Eisenberg Conference Series brings together “[e]xperts in health communication, health literacy, shared decision-making, and related fields come together to … offer insight into how state-of-the-art advances in medical science can be transformed into state-of-the-art clinical decision making and improved health communication.”
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