Putting Goal-Oriented Care into Practice: An Example. David B. Reuben, MD David Geffen School of Medicine at UCLA

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1 Putting Goal-Oriented Care into Practice: An Example David B. Reuben, MD David Geffen School of Medicine at UCLA

2 The UCLA PCORI Patient and Caregiver Goals Study Phase 1: Determining what goals are important to patients with dementia and their caregivers (focus groups) Phase 2: Determining whether patients and caregivers can identify and prioritize their individual goals (goal setting) Phase 3: Incorporating these goals into the care of patients and determining how useful they are (goal attainment scaling)

3 Phase 1: Patient and Caregiver Focus Groups Caregivers and patients with early stage disease articulated 40 objective goals for care that are different than commonly measured health outcomes for dementia. Domain Medical Care Quality of Life Physical Selected Patient-Centered Goals for Dementia Care Goals Quality of Life Social and Emotional Accessing services and support Caregiver support Doesn t get burdensome medical care Has doctors who work with us Is physically safe (e.g.: avoids falls or getting lost) Is able to die peacefully Is able to socialize with family and friends Keeps mind stimulated Has providers who understand her cultural background and/or speaks her native language Has adequate caregivers Caregiver able to control frustration about behaviors Caregiver has more free time

4 Phase 2: Goal Rating

5 Phase 2: Goal Ranking Example: Top 3 Goals (Caregiver) #1: Able to deal with stress (Caregiver support goal) #2: Is physically safe (Quality of Life-Physical goal) #3: Receive needed dementia care (Medical goal)

6 Phase 2: Examples of # 1 Goals Is able to maintain a relationship with a significant other Is able to do self-care activities Is able to socialize with friends and others Minimize family conflict in dealing with his/her dementia Is physically safe Is able to live at home Maintain my own health (caregivers)

7 Phase 3: Incorporating Goals into Clinical Practice Steps for each patient/caregiver Identify and prioritize 5 goals from inventory Can choose to add other goals Choose #1 goal from the top 5 Describe what meeting the goal would mean Meeting (could be current state or better state) Falling far short to far exceeding Measuring at 6 and12 months how well the goal was met and whether goal needs to be revised

8 Phase 3: Goal Attainment Scaling Going to graduate school in Asian- American studies -2 Much less than -1 Somewhat less than 0 Expected level (program goal) +1 Somewhat better than Rejected Wait listed Accepted Accepted with tuition scholarship +2 Much better than Accepted with tuition scholarship and stipend

9 Phase 3: Goal Attainment Scaling : -2 Much less than -1 Somewhat less than 0 Expected level (program goal) +1 Somewhat better than +2 Much better than GOAL: Stay physically active Stays sedentary due to functional decline or fall, doesn t do any exercise. Home exercise (seated squats) every other day (5-10 mins each time) CURRENT STATE Home exercise every other day (5-10 mins each time) & Add a walk or outings once a week Home exercise every other day (5-10 mins each time) & Add a walk or outings once a week & Enrolled in senior exercise program (e.g. tai chi), attend every other week Home exercise every other day (5-10 mins each time) & Add a walk or outings once a week & Enrolled in senior exercise program (e.g. tai chi), attend weekly, relating with other seniors Plan DCM will follow-up and provide information about the UCLA S.A.I.L. (Staying Active and Independent for Life) program.

10 Phase 3: Goal Attainment Scaling -2 Much less than -1 Somewhat less than 0 Expected level (program goal) +1 Somewhat better than +2 Much better than GOAL: Maintain own (mental) health beat herself up and made it a task Feels guilty when visiting mom CURRENT STATE -Feels no guilt -not cry after visiting mom Enjoy visiting mom -Enjoy visiting mom with brothers -More family visits Plan Counseling, speaking with friends, more frequent calls with dementia care manager

11 Barriers to Goal-Directed Care Patient Difficulty for patients to articulate Literacy/cultural issues Transience of goals Unrealistic patient goals Goals of and for others (e.g., family)

12 Barriers to Goal-Directed Care Clinician Culture of disease-specific goals and cure Unprepared work force Time constraints to determine goals

13 Advantages of Goal-oriented Care Frames the discussion in terms of individually desired health states Simplifies decision making for patients with multiple conditions by focusing on outcomes that span conditions Creates common ground for next steps Patients and families like it

14 Take Home Messages Most people don t need goal-oriented patient care but those who do, really do Patient-identified goals are relevant outcomes Identifying personal goals is possible and patients/caregivers are able to rank them Patients/caregivers can operationalize what it means to meet personal goals Takes time and work but holds promise Stay tuned