The Truth about Shared Decision Making. What is Shared Decision Making? What do patients in focus groups say? Traditional Doctor Patient Relationship

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1 The Truth about What is? Dawn I. Velligan, PhD Professor and Division Chief Division of Community Recovery, Research, and Training Henry B. Dielmann Chair, Department of Psychiatry University of Texas Health Sciences Center San Antonio, Texas Patient and Provider Roles Traditional Doctor Patient Relationship Authoritative model Doctor is the expert Treats the patient based on his or her expertise Doctor is in charge What do patients in focus groups say? Interactions with prescribers are not balanced Patients did not feel heard, respected, or valued Did not feel they had a say in decisions Wanted more time with the doctor and a more comprehensive exam before medication is prescribed Often did not understand the treatment, its target, or its side effects Wanted more involvement in the process Wanted information presented in a way they can understand Wanted more information about options and side effects Wanted to hear from others with the same problem Kreyenbuhl J, et al. Schizophr Bull. 2009;35(4): Dixon LB, et al. World Psychiatry. 2016;15(1): Adams JR, et al. Community Ment Health J. 2006;42(1): Velligan DI, et al. Issues Ment Health Nurs. 2016;37(6): In contrast to authoritative model, SDM is a collaborative, dynamic, interactive process whereby consumers and providers are equal partners, working together to exchange information to reach consensus on health care decisions. Arguments For and Against Poor insight in psychiatric patients Cognitive impairments in schizophrenia and other illnesses Patients tell the doctor to decide Not worth the time Emergency situations are not as amenable to SDM as management of chronic conditions Most individuals with mental illness can make good decisions support tools and information are available Patients can be engaged if certain techniques are used Better follow through with treatment Improved outcomes Kreyenbuhl J, et al. Schizophr Bull. 2009;35(4): Dixon LB, et al. World Psychiatry. 2016;15(1): Adams JR, et al. Community Ment Health J. 2006;42(1): Adams JR, et al. Community Ment Health J. 2006;42(1): Deegan PE. Psychiatr Rehabil J. 2010;34(1):23-28.

2 is Individualized Meets the person where they are Empowerment based Reflective Listening Increasing awareness of options and choices Kreyenbuhl J, et al. Schizophr Bull. 2009;35(4): Dixon LB, et al. World Psychiatry. 2016;15(1): Deegan PE. Psychiatr Rehabil J. 2010;34(1): Understanding preferences and values is central to treatment outcomes where there is no clear BEST treatment and there are many choices Patients want more input into decisions and want them to come about as a shared process SDM has been found To improve treatment satisfaction To improve follow-through with treatment recommendations To lower decision conflict To improve outcomes, including physical outcomes such as blood pressure and blood sugar Mahar M. Dartmouth Medicine. 2007;38-47, Accessed April 28, Elwyn G, et al. Br J Gen Pract. 2000;50(460): Curtis LC, et al. Psychiatr Rehabil J. 2010;34(1): Deegan PE. Psychiatr Rehabil J. 2010;34(1): : Example I want to stop taking the antipsychotic medication Traditional Approach You really need to stay on this medication. If you stop, your symptoms will most likely get worse and you may have to go to the hospital. SDM Approach What is it that is making you want to stop the medication? Let s talk about that. Let s make a plan. Barriers that patients say keep providers and patients from seeing one another as equal partners? Provider is working constantly skeptical to ensure they identify problems; patient is not working Provider may be checking the clock others are waiting Patients wait for provider many clinics overbook to ensure full schedules to cover salary Patients see providers in the provider offices Providers have white coats, keys, and separate bathrooms Velligan DI, et al. Issues Ment Health Nurs. 2016;37(6): Ways to Make Treatment s Controlled Preferences Scale I prefer to make decisions about which treatment I receive I prefer to make the final decision about my treatment after seriously considering my doctors opinion I prefer that my doctor and I share responsibility about which treatment is best for me I prefer that my doctor make the final decision about which treatment will be used but seriously consider my opinion Patients Want Collaboration and Input 73% of patients want collaboration 81% of patients want at least some input into decisions about their care I prefer to leave all decisions regarding my treatment to my doctor Degner LF, et al. Can J Nurs Res. 1997;29(3): Velligan DI, et al. Patient Prefer Adherence. In press.

3 What Do People Want? People want a patientcentered experience 8 in 10 people want their clinician to listen to them What Do People Get? Only 6 out of 10 feel listened to Less than half say their clinician asks about their goals and concerns for their health and health care 8 in 10 people want to hear the full truth about their diagnosis 7 in 10 people want to understand the risks of treatments Alston C, et al. Shared -Making Strategies for Best Care: Patient Aids. Discussion Paper, Institute of Medicine, Washington, DC. September Accessed April 28, Alston C, et al. Shared -Making Strategies for Best Care: Patient Aids. Discussion Paper, Institute of Medicine, Washington, DC. September Accessed April 28, Behavioral Strategies for Provider Behavioral Strategies: Choice Making patients aware that reasonable options exist Step Back Problem identified, let s think about what to do next Many patients don t realize a decision is being or needs to be made Offer Choice Lots of information about available treatments Let s talk about them Justify Choice Respect individual preferences Be OK with uncertainty about Tx outcome Defer closure Elwyn G, et al. J Gen Intern Med. 2012;27(10): Provider Behavioral Strategies: Options Helping patients to understand pros and cons of available options Provider Behavioral Strategies: Time to discuss what to do next Check Knowledge What have you heard about possible treatments for X? List Options First list options for the person then get into more detail Describe Options How are options similar vs different Options have different implications for each person Be clear about pros and cons Chunk information Provide Support Tools Web sites Access to peers Summarize List options again and ask patient to summarize so you can identify what has not been understood Focus on preferences Guide the person to form preferences What matters to them most Elicit a Preference Have a back up plan Offer more time Be willing to guide if that is the person s wish Moving to a decision Check for need to defer or make a decision Are you ready to decide, do you need more time? Offer Review Remind person that decisions may need to be reviewed Elwyn G, et al. J Gen Intern Med. 2012;27(10): Elwyn G, et al. J Gen Intern Med. 2012;27(10):

4 Elwyn SDM Model Provider Responsibilities Provider and Patient Roles in Choice Option Support Initial Preferences Informed Preferences Elwyn G, et al. J Gen Intern Med. 2012;27(10): Supports Coaching What is my role? What do other people say about this illness? What do other people say about medication? How do I tell my doctor X? Aids Specific Guidelines to make them fair and balanced Velligan DI, et al. Patient Prefer Adherence. In press. Deegan PE. Psychiatr Rehabil J. 2010;34(1): The Ottawa Hospital. Patient Aids. Accessed April 28, Patients Also Have Responsibilities Tell provide relevant information on their symptoms and side effects Ask ask questions to clarify their options and any information not fully understood about their condition or the treatment options Choose decide on a course of action with input from the doctor Review and Research review how treatment is going, whether expected results are being achieved, whether side effects are occurring and researching their condition and potential treatment options Velligan DI, et al. Psychiatr Serv. 2016;67(3): Velligan DI, et al. Patient Prefer Adherence. In press. Deegan PE. Psychiatr Rehabil J. 2010;34(1): Supports Pills vs LAIs Pills daily or more than once a day + Long-acting medication once a month + I need to remember to take my medication every day The medication will leave my system more quickly, so if I am having side effects they will decrease more rapidly I need to call for a refill and go the pharmacy to pick up my medication or have my medication delivered to my home If I forget to take my medication sometimes, it may not help me enough with my symptoms My doctor does not know how much medication I am really taking. He or she may raise my dose or add new medications for me to take because he or she will think my medication is not working well. I may be on some medications I don t need because I don t always take my medications My medication level goes up and down in my blood. When the level is up I may get more side effects. I will swallow pills every day. I need to get medication at the clinic once a month-they will give me a reminder call (I may still need to take oral medication if I am on several different kinds of pills) The medication will remain in my system longer, so if I am having side effects they will decrease more slowly My medication will be at the clinic when I come If I forget to go to the clinic, someone will call me so I can reschedule and this may help my symptoms My doctor knows exactly how much medication I am getting and can help me decide whether to go up or down or add medication depending on how I am doing I may be able to get off some of my medications because I will be on a stable dose of my antipsychotic medication. My medication level stays more stable and this may cause less side effects. I will see the nurse at the clinic every month to get a shot. A Case Study in SDM Brooks is a 45-year-old divorced male. He was referred to the clinic for transitional care following a recent hospitalization He believed the doctors were the sole experts in his care, and he was there to just answer questions in hopes the information would help the expert do his job An SDM coach met with Brooks 30 minutes prior to his scheduled psychiatric appointments 4 times during his treatment During these sessions, Brooks learned what SDM making is, how SDM can be of use and how it differs from counseling Swallowing pills is usually not difficult. Injections can hurt. LAI = long-acting injectable antipsychotic. Velligan DI, et al. World Psychiatry. 2013;12(3):

5 A Case Study in SDM (cont d) TAC-Review was discussed and practiced using role play He watched videos of others with depression Brooks learned that someone who is better prepared gets the most out of visits with the provider SDM empowered Brooks to share his own expertise regarding his day-to-day experience and his values, not as a way to question the expert (doctor) but as a way to help his doctor and him to put all the pieces together to improve his care Tell Choice Initial Preferences Patient Responsibilities Dyadic SDM Model Option Ask Provider Responsibilities Research Support Choose Elwyn G, et al. J Gen Intern Med. 2012;27(10): Velligan DI, et al. Psychiatr Serv. 2016;67(3): Review Informed Preferences Tell Choice Dyadic SDM Model Provider Biases and Presentation Style Option Ask Choose Review Provider Biases Knowledge of the medication or procedure Comfort with the medication, its use, and titration Habit Perceived risk aversion Research Support Initial Preferences Patient Responsibilities Provider Responsibilities Cognitive / Appraisal Biases Informed Preferences Elwyn G, et al. J Gen Intern Med. 2012;27(10): Velligan DI, et al. Psychiatr Serv. 2016;67(3): Mistry H, et al. Adv Psychiatr Treat. 2011;17(4): Provider Biases: An Example Provider Biases: An Example Florida Agency for Health Care Administration. Accessed April 28, 2017.

6 Provider Biases: Lead to Underutilization Providers believe there is sufficient adherence with oral antipsychotic medications despite decades of research that refutes this. Slow to use LAIs. Providers often are concerned with clozapine side effects and do not prescribe because they are risk averse. Which is riskier? Not providing appropriate treatment or coping with risk of side effects using evidence-based practice? Research supports that side effects such as agranulocytosis can be prevented and treated. Yes, there are a small number of fatalities. Clozapine has the lowest mortality of any antipsychotic medication due to reduction of suicide risk. Heres S, et al. J Clin Psychiatry. 2006;67(12); Samalin L, et al. J Nerv Ment Dis. 2013;201(7): Kim SW, et al. Int Clin Psychopharmacol. 2013;28(2): Meltzer HY. Clin Schizophr Relat Psychoses. 2012;6(3): Presentation Style In an ethnographic study in community mental health centers, we listened to offers of LAIs We found that providers asked in ways that created a NO You don t want a shot do you? What would you think about a shot? How can you chunk information to make it easier to grasp? Ones vs Pines As options increase this gets more and more difficult Presentation Style interacts with patients cognitive limitations and appraisal biases Weiden PJ, et al. J Clin Psychiatry. 2015;76(6): Neuropsychological Profile for Individuals with Schizophrenia Cognitive Impairments add another layer of difficulty for SDM z Score Profile Mean Control Participants Profile Mean Heuristics Heuristics are rules of thumb that people use to help solve problems, or make decisions Subjective assessment has to rely on incomplete data Instinctive gut reactions that we know are correct Economical in terms of cognitive resources Usually effective but can lead to errors ABS VBL SPT SME VME LRN LNG VSM AUD MOT ABS = abstraction; VBL = verbal cognitive; SPT = spatial organization; SME = semantic memory; VME = visual memory; LRN = verbal learning; LNG = language; VSM = visual-motor processing and attention; AUD = auditory processing and attention; MOT = motor speed and sequencing. Saykin AJ, et al. Arch Gen Psychiatry. 1991;48(7): Tversky A, et al. Cognitive Psychology. 1973;5(2): Halo effect The tendency to lump positive things together So if we have an attractive nice doctor we may be more likely to go along with a risky treatment recommendation because we view it more positively Confirmation bias Ignoring information that does not fit in with our beliefs while weighing information that fits more heavily So we know that shots hurt based on lots of experience and we may weigh this more heavily than information regarding how consistent medication can help our recovery

7 Heuristics Mere Exposure Effect the availability heuristic People tend to develop a preference for things just because they are familiar with them (don t take into account base rates) So if we know about Good old antidepressant that is likely to be what we will prefer over a medication we have never heard of Heuristics Negativity Bias People pay more attention and give more weight to negative rather than positive experiences and information So if I read the package insert about all the things that can go wrong if I take the medication I may discount the positive benefit it could have Heuristics Heuristics can lead to inconsistent choices made by patients In fact, some argue that preferences are determined in the moment and are not trait-like People will choose the least risky option This may cause people to select a treatment that is not optimal because they see it as less risky People don t like uncertainty They may not want treatment if outcomes are too uncertain Heuristics and Biases That Impact Making Using heuristics can lead to problems in decision making People s decisions often do not reflect their own values Surgery 1 Surgery 2 80% cure rate without complications 80% cure rate without complications 4 % complications 20% die 16 % die 90% of people say each complication is better than death but 49% choose surgery 2; a choice inconsistent with their values Providers Use Heuristics in Diagnosis and Treatment Because providers make decisions in limited time they use heuristics; their use may cause errors The representativeness heuristic is the assumption that something that seems similar to other things in a certain category is itself a member of that category. There is a group of people. 30% are engineers and 70% are psychologists. Jack is described as conservative and careful. Is Jack an engineer or a psychologist? Providers Use Heuristics in Diagnosis and Treatment More people say engineer than they should based on these personality characteristics ignoring the base rate. Klein JG. BMJ. 2005;330(7494): Klein JG. BMJ. 2005;330(7494):

8 Helping Providers Avoid Overreliance on Heuristics Be aware of base rates Consider whether data are truly relevant, rather than just salient Seek reasons why your decisions may be wrong and entertain alternative hypotheses Ask questions that would disprove, rather than confirm, your current hypothesis Remember that you are wrong more often than you think Low Numeracy is Also an Issue 48% of a nationally representative sample could not calculate change from prices 193 million Americans lack numerical skills necessary to do basic health related tasks (eg, calculating dose based on weight) Klein JG. BMJ. 2005;330(7494): Peters E. Curr Dir Psychol Sci. 2012;21(1): How is Numeracy Measured? Objective Measures In the Big Bucks Lottery, the chances of winning a $10.00 prize is 1%. What is your best guess about how many people would win a $10.00 prize if 1000 people each buy a single ticket to Big Bucks? Which of the following numbers represents the biggest risk of getting a disease? 1 in in in 10 How is Numeracy Measured? Subjective Measures How good are you at working with fractions? (1 = not at all good, 6 = extremely good) When you hear a weather forecast, do you prefer predictions using percentages (eg, There will be a 20% chance of rain today ) or predictions using only words (eg, There is a small chance of rain today )? (1 = always prefer percentages, 6 = always prefer words; reverse coded) Fagerlin A, et al. Med Decis Making. 2007;27(5): Fagerlin A, et al. Med Decis Making. 2007;27(5): How is Numeracy Measured Subjective questions are faster and less stressful for patients They also have questionable accuracy Numeracy and Framing Effects Providers can give accurate numerical information that is perceived differently based on Framing Frames include the information around the key health information as well as whether the information is stated in the positive vs negative direction People with poor numeracy are more impacted by framing Peters E. Curr Dir Psychol Sci. 2012;21(1): Peters E. Curr Dir Psychol Sci. 2012;21(1):31-35.

9 Numeracy and Framing Effects Providers can give accurate numerical information that is perceived differently based on Framing Frames include the information around the key health information as well as whether the information is stated in the positive vs negative direction People with poor numeracy are more impacted by framing Numeracy and Framing Effects Greater risk is perceived when situations are described using frequency vs probability % dying not the same as the reverse % surviving 10 of 100 mental patients are estimated to commit violence is seen as worse than 10% Less numerate individuals are more influenced by emotional or salient information ie, HEURISTICS Peters E. Curr Dir Psychol Sci. 2012;21(1): So By the time all aspects of SDM behavior and the characteristics of participants are combined this is far more difficult than we may realize Concrete Suggestions Invite the person to participate How would you like to go about making this decision? Prompt for values and preferences What is important for you to consider in making this decision? Center for Collaboration, Motivation & Innovation. The Guide. February 5, Making_Guide_ pdf. Accessed April 28, Deegan PE. Psychiatr Rehabil J. 2010;34(1): Concrete Suggestions (cont d) Risk Communication Understandable terms Based on person s values and preferences Use absolute risk when possible: Taking a statin reduces your risk of having a heart attack in the next 10 years from 10 people in 100 to 8 people in 100 Frame risk in a balanced way: About 10 of 100 people like you will have a heart attack in the next 10 years and 90 out of 100 will not Review Possible Downsides: This medication needs to be taken every day. The pills cost money, and common side effects are Use Graphics or Pictures Center for Collaboration, Motivation & Innovation. The Guide. February 5, Making_Guide_ pdf. Accessed April 28, Concrete Suggestions (cont d) Elicit Choice What do you think you will do? Address al conflict Sometimes people decide to consider it for a while, talk to someone they trust, or get another opinion. Would any of these work for you or do you have an idea of your own? What is making this decision so difficult for you? Reflect and summarize Check for Understanding Can you tell me back what we ve talked about regarding this decision so I know if I was clear? Center for Collaboration, Motivation & Innovation. The Guide. February 5, Making_Guide_ pdf. Accessed April 28, Deegan PE. Psychiatr Rehabil J. 2010;34(1):23-28.