Last update: September 2008 Decision Support as a Clinical Skill Module II: Using the Ottawa Personal Decision guide Last update: September 2008

OTTAWA DECISION SUPPORT FRAMEWORK Decisional Needs Decisional conflict (uncertainty) Decision: type, timing, stage, leaning Knowledge & Expectations Values clarity Support/resources Personal/Clinical Characteristics Quality Informed, values-based Actions Delay, continuance Impact Values-based health outcomes Reduce regret and blame Appropriate use & cost of health services Decision Support Clarify decision and needs Provide facts, probabilities Clarify values Support/Guide/Coach Monitor/Facilitate progress The Ottawa Decision Support Framework (DSF) acknowledges that the goal of Decision Support is to help patients make high quality decisions. When decisions are of high quality patients are found to be satisfied with the decision and experience less decisional regret regardless of the outcome. High quality decisions are: Informed Based on values and preferences Acted upon (implemented) British Medical Journal 327:736-740, 2003

Health Decisions Best Suited for the Ottawa DSF No clear “choice” that’s right for everyone Stimulated by new circumstance, medical diagnosis, or developmental transition Careful deliberation --- uncertain outcomes (scientific uncertainty) Options have different benefit/harm profiles that clients value differently More effort in deliberation than in implementation The Ottawa DSF is designed to help with values sensitive decisions when there is more than one reasonable choice and when there is enough time available to deliberate. For example, medical emergencies are not amenable to this framework. New circumstance: A pregnancy leads to the decision whether to stay home after the baby is born or return to work. When potential outcomes are uncertain decisional conflict can be high and one must think carefully about the potential risks and benefits. Benefits or harms that clients value differently: One person with Stage IV lung cancer might value having chemotherapy in addition to supportive care so he will live to see his daughter get married. Another may put a higher value on the quality of life remaining and prefer to just have supportive care. More effort when deliberating versus implementing the decision. A decision about whether or not to have surgery may require a fair amount of deliberation, however, once the decision is made it is fairly easy to implement. Whereas when making a lifestyle decision such as quitting smoking or weight loss it is much more difficult to implement. Prochaska’s stages of change is a better model for this situation.

Ottawa Personal Decision Guide Clarify the Decision Identify Decision Making Needs Explore Needs Plan Next Steps The Ottawa Personal Decision Guide (OPDG) is based on the Ottawa framework. It is a generic tool designed to be used independently or with a coach to help with any decision. The coach can be the clinician (nurse, physician, social worker, etc.) working with the patient or, if available, an independent decision support counselor. The guide has 4 steps which assess decision making needs and explore ways to address those needs. The 4 steps include clarifying what decision needs to be made, looking broadly at areas that may be making the decision difficult, exploring those areas in detail and finally planning next steps which will allow the person to move forward in their decision making. Follow-up should include evaluating progress in following through on the plan. The OPDG is provided in the handout folder. It is also freely available as both a printable PDF document and as an interactive web based document at http://decisionaid.ohri.ca/decguide.html

Step 1: Clarify the Decision Sometimes the first step is figuring out what decision or decisions need to be made. Clarify the exact decision in the patient’s own words. Sometimes this differs from what the clinician has identified as the decision needing to be made. Timing: Decision support is less useful if the decision needs to be made immediately. Decision support requires time for deliberation. Stage: Some have already made a decision (i.e. already scheduled their surgery) but find that decision support can help to validate the decision which may reduce future decisional regret. Most clients seen for decision support are considering the options and may be close to choosing an option. Leaning: Choice predisposition If leaning towards a particular option this process can assess whether that choice is in keeping with stated values and preferences. Example: Patient leaning toward mastectomy but expresses that it is important to keep her breast.

Step 2: Identify Needs These questions assess for the presence of decisional conflict and identify what might be the source of the conflict. If the guide is not readily available when you are counseling you can use the acronym SURE to remember what areas to explore. Sure = Certainty Uninformed = Knowledge Knowledge gaps are the key. Patients who have not yet thought about the options are not ready to engage in decision support counseling. Similarly, if they have not met with the clinician(s) who have the information on options, pros and cons and likelihood of each pro or con occurring, they are not ready to move forward with decision making. Determine what their knowledge needs are, who they should talk to, and ask them to return for counseling if the DC persists once the knowledge gaps have been addressed. Risk/Benefit ratio = Values Exert pressure (see next slide)= Support Support includes not only emotional support but resources, both financial and practical

Step 3: Explore Needs Support/Pressure If a patient is feeling pressured to make a specific choice: Explore the nature of the pressure Source: Focus on the opinions of those who matter. Points of agreement/disagreement: Is the other person informed? What are their values? Handling pressure: plan communication Communicate your knowledge & values Consider having a mediator Role play Ask other person to complete the OPDG to explore points of agreement and disagreement Example: A patient feels pressure to proceed with hormone therapy to reduce the risk of recurrence of breast cancer. She is willing to accept the higher risk to avoid the side effects of treatment, but is worried that her doctor will be upset if her breast cancer comes back – he’ll consider it a failure.

Client’s Characteristics Age Gender Locale Occupation Education Language Ethnicity Medical diagnosis Duration of diagnosis Marital status Family composition Health status physical cognitive emotional social It is important to recognize and respect desired role in decision making – however a preference to defer decision making to others, may change as they feel more empowered to be involved in making the decision through the process of decision support. Age: Contrary to the stereotype that younger people are more likely to want to participate in decision making, we have found that most older individuals, when given the opportunity and the tools, are happy to be engaged in the process. (i.e. – women in their 80s with breast cancer) Gender: Women and men may approach decision making differently and women may experience higher levels of decisional conflict. Ethnicity: In some cultures, men are the decision makers while in others it is women who are the decision makers. The Inuit culture practices group decision making – decisions are made based on what is best for the group rather than for the individual Health status is an important determinant when considering options. For example a man with significant co-morbidities may approach decision making about treatment for prostate cancer very differently from a man who is otherwise healthy. The desired role may vary for the same person in different circumstance or at different points in the disease process.

Step 3: Explore Needs Knowledge Values Certainty This section guides you to look at what you know, what you value, and what matters most to you. Benefits and risks are put in the context of reasons to choose or avoid an option. A typical pro/con list may lead to a decision based on the length of each list. This guide directs you look at each pro and con individually and determine how important each is. Sometimes one or two factors are found to be most important and will determine the option to choose. Knowledge gaps are discovered and items that need clarification can be written down. The person providing support can help to clear up misconceptions, find information, or refer to other providers as needed. (See Module V: Communication Risk Information) Example: Teenager with ulcerative colitis considering colectomy. Main benefit per mom: avoid the risk of colon cancer. However she hadn’t discussed with the physician what that risk is. This information is essential before making a choice and obtaining the answer to this question will become part of the “plan”.

Example Patient with painful knee osteoarthritis This is an example of how to complete this section of the guide. Fill in the known options List the potential benefits (reasons to choose) and risks (reasons to avoid) of each option This person has some questions about whether repeat surgery would be required and whether he would experience more side effects if he increased his pain medication – this information could be clarified for the patient, or as part of the plan he could be referred back to his clinician to answer these questions.

Example Assign Importance Next assign a level of importance to each benefit and risk. One * means it is not very important. Five ***** means that it is extremely important. The items are not ranked against each other, rather each one is ranked individually. If possible, circle the option that, from the patient’s perspective, has the most important benefits and the least concerning risks.

Step 4: Plan Next Steps If a decision has been made the next step is to move forward on implementing the choice. However it is important to remember that the purpose of the guide is not to have made a decision by the end of the guide but rather to have a plan for the steps needed to move forward with decision making. The plan should include: Steps to obtain additional information if needed. How to deal with issues of pressure, who to seek out for support, who to contact for needed resources (financial, child care, etc.). Ways to further weigh the pros and cons.

Progress in Decision Making Leaning: Choice predisposition Leaning towards a specific option? Certainty: Best choice for you? Stage: Aware of options? Close to choosing? Already made a choice? It is important to follow up either in person or by phone to assess the patient’s progress in Decision Making. This will provide feedback to the patient and coach regarding the helpfulness of the decision support process. If the decision coach is not the provider, the follow-up typically happens after the patient has met with their provider for further discussion. The provider can also be asked whether he or she felt the patient was more prepared for the visit as a result of receiving decision support. Portions of the guide can be reviewed to assess for further decision making needs.

Experience using the OPDG If you are presenting this web module to a group, we recommend that you include an exercise that allows the participants to practice using the guide. This will give them a true appreciation for the power of this tool. The OPDG is provided in the handout folder. It is also freely available as both a printable PDF document and as an interactive web based document at http://decisionaid.ohri.ca/decguide.html Instructions and wrap up are on slides 15 and 16 of this module.

Using the Ottawa Personal Decision Guide Any Decision Form groups of two ‘Client’ making a difficult decision ‘Practitioner’ interview ‘Client’ choose a real decision (health decision, career, education, move, buy a car) ‘Practitioner’ interviews patient & documents on the Ottawa Guide Discussion

What happened? What helped? Discuss how the guide was helpful. Did it help participants to: Organize their thoughts Think about issues that hadn’t previously occurred to them Clarify what is most important to them related to the decision How might you use the guide in your own practice?