Over the past several decades, the medical community has been moving toward a model of shared decision making. In addition to its ethical advantages, shared decision making potentially yields such benefits as improved medical adherence and better health outcomes. With the proliferation of treatment options and changes in the larger culture, shared decision making is even more important. Yet practical barriers leave many questions about how to best implement the practice.
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Explore This IssueJune 2018
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For several decades, modern medicine has been moving away from a paternalistic model of medical care and toward patient-centered medicine, with the earliest mention of shared decision making dating from 1982.1 An influential article on clinical practice guidelines argued that interventions should be considered standard only if there is almost unanimous agreement among patients about the desired outcomes.2
For the majority of clinical decisions, no single intervention meets these criteria. In most cases, more than one reasonable option is available, with each option having its own strengths and possible side effects. Thus, patient preferences and values must be considered in determining the optimal treatment strategy.3
Both European League Against Rheumatism (EULAR) and ACR guidelines recommend shared decision making when choosing treatment options, incorporating patient values and preferences in the final decision.4,5
Sonali P. Desai, MD, MPH, is an associate physician in rheumatology at Brigham and Women’s Hospital and an assistant professor of medicine at Harvard Medical School in Boston, Mass. She believes a variety of factors has propelled the move toward shared decision making. Among these are greater access of medical records to patients, increased availability of general medical information (via the Internet) and direct to consumer marketing. She notes, for example, that the number of medications available to treat rheumatoid arthritis has grown quite substantially over the past decade or more.
“When you have more options, there is more of a conversation that you need to have regarding what you should do next,” Dr. Desai says.
A variety of factors has helped propel the move toward shared decision making. Among these are greater access of medical records to patients, increased availability of general medical information (via the Internet) & direct-to-consumer marketing.
Defining Shared Decision Making
In the older, paternalistic model of medicine, physicians made treatment decisions with little patient input. In the shared decision-making model, patients and physicians work in tandem to come to treatment decisions. Clinicians come with their clinical acumen and expertise, and patients come with their expert knowledge of their own personal experiences, as well as their own preferences, values and lifestyle goals. The idea is to support patients in the decision-making process—not to make them feel abandoned and alone with the sole responsibility for their decisions. At its heart, the goals of shared decision making derive from a belief that individual self-determination is desirable whenever possible and that clinicians should support patients in this.6
Shared decision making is challenging to define in a precise way. However, generally speaking, a process of shared decision making simply means that patients’ preferences and choices must be incorporated as physicians and patients make joint decisions on their medical care.
Dr. Desai notes, “In some cases the next step is pretty clear—you don’t need to have a huge conversation.” But in other cases, important questions can and should be asked. “Would you rather come to the hospital for an infusion every month, or is it better for you and your lifestyle to give yourself an injection? Or is the potential risk of this side effect vs. the benefit offered by this treatment more important to you? Sometimes people want to continue to drink two glasses of alcohol every night, and then methotrexate may not be an option.”
Robert H. Shmerling, MD, is associate physician and clinical chief of rheumatology at Beth Israel Deaconess Medical Center and an associate professor of medicine at Harvard Medical School in Boston. He is a rheumatology consultant for a grant sponsored by the Institute for Healthcare Improvement studying shared medical decision making in rheumatology. He notes, “My own approach is that I want to give patients the information that they need to make a good decision, but it is their decision. I embrace the idea that if the patient is going to take a risk by taking a medication—and of course, all medications have risk—then they need to know what they are getting into and be enthusiastic or at least supportive of the plan that we come up with.”
Dr. Desai says, “I always tell people up front: ‘We want to get you better, but we need to come up with a treatment plan that you feel comfortable with and you are going to be able to take, because I could prescribe for you one of many things. But what’s the best option for you given your overall health and preferences?’ I try to get them involved in the conversation.”
Dr. Shmerling adds, “If I feel like the patient has an understanding of why I’m recommending what I’m recommending, and they decide they like something different or they don’t want to do that, then I have to accept it. It is a completely different model, one in which the patient is the focus rather than the doctor telling them what to do. I often say to my patients, it’s like being a coach with players: You can recommend a certain way of doing things, but ultimately they’ve got to buy into this system and actually do it.”
Benefits: Increased Adherence
One of the key benefits to a shared decision-making model is increased medical adherence. Approximately 50% of people with chronic medical conditions do not take their medications as prescribed, and estimates of medication adherence among rheumatoid arthritis patients range from 30% to 80%.7,8 This nonadherence has a devastating impact on health outcomes, severely impairing the effectiveness of treatment.8 It has increasingly become recognized that patient preferences play an important role in adherence to prescribed therapies.9 Patients may have a variety of preferences influencing the best treatment option for them, including mode and frequency of administration, specific side effects, potential benefits and cost.
Melanie J. Cozad, PhD, is an assistant professor in health services policy and management at the Arnold School of Public Health at the University of South Carolina in Columbia. “Treatments offer different trade-offs between symptoms and side effects, but also possibly impede the goals individuals have for their lifestyle. If we end up with a treatment that is not compatible with where you want to go in your life, then you are probably not going to adhere to it.”
Dr. Desai agrees, but she also notes patients may have other reasons not to adhere that cannot always be addressed by shared decision making. She cites the example of patients prescribed etanercept or adalimumab who need to give themselves a shot every week or every other week. Some patients get so anxious about the shot they find it even worse than the condition being treated. “Sometimes you find that out too late,” she says. “It’s better to have that conversation up front and be open about it.”
Evidence from many randomized trials supports the idea that shared decision making fosters a number of other important outcomes. These include increased confidence in decisions by patients and increased patient knowledge. Some evidence suggests that patients involved in shared decision making are also more likely to opt for conservative treatment options where appropriate.6
Ultimately, greater use of shared decision making could help reduce overall healthcare costs by increasing medical adherence and helping patients avoid treatments they don’t want.10
Diverse Patient Perspectives
Patients differ in their interest in and willingness to participate in shared decision making. Dr. Shmerling notes, “Some patients are very much in the older model of paternalistic doctors telling patients what to do. And they say, ‘I appreciate you offering all this information to me, but you just tell me what to do, and I’ll do it.’ That tends to be older patients.”
He contrasts this with another group of patients. “There are others who arrive very interested in being part of the decision making, and they already have some ideas about what they want to do to manage their arthritis, from their own research, from their friends or family.”
Dr. Desai concurs: “Some patients will be fine with the more paternalistic approach. Also, because of the complexity and number of choices, even if they were given choices, they still may not know which one makes the most sense. They are looking for you to guide them in that process.” She notes that some people come from negative experiences with their healthcare in general. “Either they may not feel empowered to really speak up to share their preferences or what they really think, or that may not be part of their personality.”
Even patients who appear not to be interested in a shared decision-making approach may benefit from being invited into this conversation. Some patients still feel socially pressured not to speak up during medical encounters. A review of 44 studies suggests that most patients want to participate in a process of shared decision making, but many feel they are unable to do so. Patients may not recognize the expertise they themselves bring, and they may underestimate the importance of their role in finding the right treatment. Some patients fall into a purely passive mode out of a desire to be a “good patient.” This may especially be true of older individuals and individuals of lower educational achievement.11
Sometimes patients are reluctant to participate in discussions of shared decision making because they feel they don’t know enough about their medical condition and treatment options. Sharing information well is not a component of shared decision making per se, but more an important baseline component of good clinical care. It is also a prerequisite for truly shared decision making: Patients cannot truly participate in their care if they do not have the information most relevant to them when making a choice. Dr. Shmerling also notes that patients need to be empowered with accurate and reliable information to make the best decisions.
It is also important that patients have reasonable expectations of the treatment right from the outset. Setting up these expectations is particularly important for rheumatologists, who often treat conditions over long periods of time. “If the patient understands the rationale for the medication, understands what to watch for, understands that it is a long-term plan, not necessarily something that is going to make a difference tomorrow, but may protect their joints over the long term—all those things help them stick with the plan or help them communicate with their doctors when things don’t go right,” Dr. Shmerling explains.
In her practice group, Dr. Desai notes they regularly try to create or provide patients with useful educational materials to aid in the decision-making process. “There are so many things you have to explain. And patients—they can only hear so much—it is a lot of information. Often, I’ll just tell them to go to the ACR’s website, because it has really good information on all of the drugs and how they work—patient friendly information they can access and think about before they even make a decision.”
A variety of other decision support interventions are available, summarizing information in ways easily accessible to patients. These may be brief text or diagrams, or longer, in the form of booklets, DVDs or websites.12 The Mayo Clinic offers a variety of shared decision-making resources, as well as a helpful decision-aid tool for rheumatoid arthritis.
In the real world, shared decision making often runs into practical barriers. Dr. Desai sees time as one of the key issues preventing some clinicians from using shared decision making. “If they are a new patient, and you also want to diagnose them and even start them on a treatment, that is really hard to do in 40 minutes in an effective way. The shared decision making takes time, and it often takes more than one visit.” In a brief office visit, clinicians may not feel like they have time to discuss what is most important to patients about their life goals. Unfortunately, existing reimbursement systems provide incentives for short office visits and little financial reward for shared decision making.10
Many patients wish to learn more about their options before making a decision, and they want time to discuss their options with family members or friends.6 If possible, practitioners should recognize this need and find ways to accommodate it into their practice.
On a systems level, Dr. Desai notes that in some settings, the process of shared decision making may best be implemented through a follow-up visit via telemedicine, after the patient has had time to become educated about their options and consider their values and preferences. Ultimately, new systems may be needed to make time for truly shared decision making and to reward clinicians who engage at that level.6
Changing the patient/provider communication dynamic will require changes on the part of patients as well. Dr. Cozad and her colleagues are currently accruing data for a project encouraging patients to bring their goals and priorities for care to the clinical encounter. They have created a tool that asks patients questions about their lives and the major symptoms and side effects they would like managed. The tool turns their answers into a graphic that can then be used to share information with their medical provider in a streamlined fashion. “Hopefully, by using that graphic, they can talk about it with their rheumatologist and then improve treatment adherence,” says Dr. Cozad.
Dr. Cozad believes this approach is empowering to patients who may feel bound by the old paternalistic model of medicine. “We wanted to change that mentality and get our patients to realize that by voicing your priorities, preferences and goals, you are more actively participating in your care, and the more actively you participate in your care, the better we can take care of you.”
If researchers find the tool does improve shared decision making, they hope to work with health technology and electronic medical systems to get the system embedded in the electronic medical system. Patients could access the surveys prior to their visits and then have the surveys included as part of their permanent medical records.
“As you talk about patient-provider communication and shared decision making, it is two parties that are at play,” notes Dr. Cozad.
Barriers: Physician Attitudes
Data from patient surveys indicate a gap often exists between physicians’ and patients’ perceptions of how much shared decision making is taking place. Although many providers report they engage in shared decision-making practices, patients may not share this perspective.6 Thus, decisions may not be as truly shared as physicians often believe.
Dr. Desai believes that shifting physicians’ attitudes is another key component to increase shared decision making. Clinicians who have conducted their visits a certain way over many years may be unlikely to change unless they see a problem.
“If people feel they understand what their options are and feel like you have made a decision together, they are more likely to be adherent, but they are also more likely to achieve their target. It’s all connected to overall having better improvement in the quality of care,” says Dr. Desai. She adds, “Most rheumatologists would see the value in trying to get all of their patients into remission or low disease activity if that’s an appropriate goal for that patient. I think that if we frame it that the shared decision making is a means to that end, … people are more likely to get on board.”
Assessing levels of shared decision making and integrating quality improvement methods are challenges in a research setting as well. As part of a research grant, Dr. Desai’s group is assessing shared decision making in rheumatoid arthritis in the context of physicians’ patient notes. However, she says this may not be a very reliable way to assess how much shared decision making is really happening, because physicians are not expected to document every aspect of the clinical encounter. Patient surveys are another avenue to investigate patients’ perceptions of shared decision making.13
Dr. Desai recommends that clinicians working in a group setting set aside time together to compare notes about how they handle patient education and shared decision making. Her team is also reinitiating a focus group of rheumatoid arthritis patients who can provide feedback on patient desires and shared communication. They also use an existing patient support group to ask patients about their preferences for educational materials to help guide shared decision making.
Another aspect of shared decision making is realizing when a treatment change is needed. For example, Dr. Desai’s group is now collecting patients’ scores on RAPID3 (Routine Assessment of Patient Index Data 3) via tablet computers in the waiting room to measure rheumatoid arthritis disease activity. The RAPID3 score is automatically uploaded into the medical record and can be used during the office visit to show patients how their rheumatoid arthritis is responding to treatment over time. This can aid patients and providers to make shared decisions over medication changes.
“I think medicine has evolved to where you really want the patient to be an equal partner in the decision making around medications,” Dr. Desai concludes. Unfortunately, practicalities, such as time, continue to pose barriers to implementing shared decision making in many clinical settings. But increased awareness and willingness on the part of physicians to embrace shared decision making is likely to help. More patients may want to participate in shared decision making than providers realize—they just need the encouragement and guidance to do so.
Ruth Jessen Hickman, MD, is a graduate of the Indiana University School of Medicine. She is a freelance medical and science writer living in Bloomington, Ind.
- President’s Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Making Health Care Decisions. The Ethical and Legal Implications of Informed Consent in the Patient–Practitioner Relationship. Washington D.C.: 1982.
- Eddy DM. Designing a practice policy: standards, guidelines, and options. JAMA. 1990 Jun 13;263(22):3077–3084.
- Barry MJ, Edgman-Levitan S. Shared decision making—pinnacle of patient-centered care. N Engl J Med. 2012 Mar 1;366(9):780–781.
- Singh JA, Saag KG, Bridges SL Jr, et al. 2015 American College of Rheumatology guideline for the treatment of rheumatoid arthritis. Arthritis Rheumatol. 2016 Jan;68(1):1–26.
- Smolen JS, Landewé R, Breedveld FC, et al. EULAR recommendations for the management of rheumatoid arthritis with synthetic and biological disease-modifying antirheumatic drugs: 2013 update. Ann Rheum Dis. 2013 Mar;73(3):492–509.
- Elwyn G, Frosch D, Thomson R, et al. Shared decision making: A model for clinical practice. J Gen Intern Med. 2012 Oct;27(10):1361–1367.
- World Health Organization. Adherence to long-term therapies: Evidence for Action. Geneva, Switzerland: World Health Organization; 2003.
- van den Bemt BJ, Zwikker HE, van den Ende CH. Medication adherence in patients with rheumatoid arthritis: A critical appraisal of the existing literature. Expert Rev Clin Immunol. 2012 May;8(4):337–351.
- Alten R, Krüger K, Rellecke J, et al. Examining patient preferences in the treatment of rheumatoid arthritis using a discrete-choice approach. Patient Prefer Adherence. 2016 Nov 1;10:2217–2228.
- O’Malley AS, Carrier ER, Docteur E, et al. Policy options to encourage patient phyisian shared decision making. National Institute for Health Care Reform. 2011;5:1-10.
- Joseph-Williams N, Edwards A, Elwyn G. Power imbalance prevents shared decision making. BMJ. 2014 May 14;348:g3178.
- Stacey D, Légaré F, Col NF, et al. Decision aids for people facing health treatment or screening decisions. Cochrane Database Syst Rev. 2014 Jan 28;(1):CD001431.
- Doherr H, Christalle E, Kriston L, et al. Use of the 9-item Shared Decision Making Questionnaire (SDM-Q-9 and SDM-Q-Doc) in intervention studies—A systematic review. PLoS One. 2017;12(3):e0173904.