Patient Priorities Care: Moving from Disease-Based to Patient Priorities-Aligned Decision-Making Mary Tinetti, MD, Professor of Medicine and Chief of.

Presentation on theme: "Patient Priorities Care: Moving from Disease-Based to Patient Priorities-Aligned Decision-Making Mary Tinetti, MD, Professor of Medicine and Chief of."— Presentation transcript:

1 Patient Priorities Care: Moving from Disease-Based to Patient Priorities-Aligned Decision-Making
Mary Tinetti, MD, Professor of Medicine and Chief of Geriatrics, Yale School of Medicine Caroline Blaum, MD, MS, Director, Division of Geriatric Medicine and Palliative Care, NYU School of Medicine Mary Caroline PatientPrioritiesCare.org @PtPriorities

2 What is Patient Priorities Care?
Moves decision-making & conversation from: From: You need (fill in treatment) for your (fill in disease) To: “Knowing all your conditions, your overall health, and your health outcome goals and care preferences, I suggest we try (fill in treatment option).

3 Patient Priorities Care
Is Not: A new care model or treatment Not limited to any care setting, disease, or health status Is: Approach to helping patients & clinicians make decisions aligned with what matters most to each patient

4 Patient Priorities Care
Member of health team helps patients identify their health priorities Clinicians align their care with achieving these health priorities Health priorities = each patient’s specific health outcome goals given their specific care preferences

5 What are health outcome goals?
Health & life outcomes most desired “SMART” goals (e.g. Babysit grandson 3 times/week; walk 2 blocks to poker game Distinct from behavioral goals such as stop smoking or disease goals such as A1c or BP)

6 Examples of Health Outcome Goals
…babysit my grandchildren each day to help my daughter while she works …be able to work outside in garden and push a wheel barrel – fatigue makes this difficult …do ceramics again and walk ½ mile with my husband everyday—tiredness makes this difficult Examples of Health Outcome Goals

7 What are care preferences**?
Health care utilization (e.g. # visits, hospitalizations; diagnostics) Medication management (e.g., complexity; adverse effects; costs) Self-management tasks (e.g., diet; monitor weights, bp, glucose) Procedures (time, discomfort, anxiety, complications; time to recover) ** What patients are able to do and feels helps them achieve goals Boyd, Montori

8 Examples of care preferences: Helpful and doable
I go for blood work every month; it is not bothersome CPAP helps I walk & do the exercises that PT taught me every day Omeprazole helps my reflux Examples of care preferences: Helpful and doable

9 Examples of care preferences: Not help or unable
My medications are causing my muscle pain and makes it hard to walk and be active I get hypoglycemic, I get weak and shaky. I’m taking too much of something Ropinirole gives me hallucinations; doesn’t control my restless leg Examples of care preferences: Not help or unable

10 Patient priorities decision-making & care is important because…
Care for many older adults with multiple conditions Of uncertain benefit (lack of evidence) Burdensome Unintentional harm Frustrating for clinicians Individuals vary in health priorities in face of tradeoffs

11 To illustrate, Mr. A, an 83-year-old man with fatigue, decreased appetite, weakness
Previous M.I. Diabetes Hypertension Heart failure (EF 28%) Osteoporosis Depression He thinks… his medications are causing a lot of his symptoms too much of his time involved in his health care

12 Disease-based care for Mr. A
Cardiologist: concerned about heart failure & blood pressure; ↑ β-blocker & statin; implantable cardioverter defibrillator Endocrinologist: concerned about HgbA1C & fractures; start insulin, bisphosphonate Psychiatrist: concerned about depression; ↓ or stop β-blocker, add another antidepressant Primary Care: Concerned about BP & A1C metrics; navigate conflicting recommendations Result for Mr. A: ~20 visits/month + blood draws; 12 medications →fatigue, weakness,↓ appetite

13 As Mr. A’s story shows…… Care for older adults with multiple conditions : Of uncertain benefit (lack of evidence) Not focused on what matters most Burdensome; conflicting Unintentional harm Frustrating for patients & clinicians

14 Care may be of uncertain benefit
Few older adult with multiple conditions and functional limitations in RCTs Persons with multiple conditions may have less benefit from treatments than RCTs With multiple conditions: what outcome defines benefit?

15 Care is not always aligned with what matters most …
Patients vary in their health outcome goals when faced with tradeoffs Maintain function even if don’t life as long: 42% Relief of symptoms like pain, dyspnea, fatigue: 32% Stay alive even if less functional: 27% Fried TR Patients vary in their care preferences / treatment burden tolerance (willing & able to do to achieve outcomes) Montori, Boyd

16 Care may be burdensome “ Caring for my chronic conditions is more burdensome than the conditions” (Montori; Boyd)

17 Care may be unintentionally harmful
1 in 3 older adults receives a guideline- recommended drug to help one condition that may worsen another one (Tinetti, ) Older adults with multiple conditions face many tradeoffs and are at risk of adverse medication effects

18 Care can be frustrating for clinicians
Conflicting recommendations from colleagues who focus on a different disease Patients don’t do what we want Clinician thinks patient not adherent Patient thinks “I cant do this” or “this won’t help me do what’s important” Conflicts & frustration arise because different priorities (unspoken)

19 How can we work together to make Mr. A’s care…
Less burdensome & frustrating, and better focused on what matters most to him and his family? Less expensive and fragmented for health systems and society? Less frustrating for the clinicians who care for people like Mr. A?

20 Answer: Patient Priorities Care

21 A bridge between: and Disease-based decision-making & care
Decision-making & care based on what matters most to patients and

22 For whom is patient priorities care most helpful?
Appropriate for everyone Multiple conditions and multiple clinicians Getting conflicting recommendations Feeling burdened by care Uncertain benefit of guideline-based care

23 The number of people in each of the above 3 groups may vary depending on the population and the specific comorbidities or advanced disease. The model is intended to demonstrate that there is a substantial group of older adults (uncertain) for whom guideline-driven care or advanced disease care is of uncertain benefit or not appropriate. Blaum, et al JAGS 2018.

24 Planning patient priorities care (Carealign): 2014-2015
Advisory groups of patients, caregivers, primary & specialty clinicians, health systems, payers, systems design, policy makers (~150) Ferris R et al. J Aging Health, 2017

25 Planning Patient Priorities Care: Aims
Identify modifiable contributors to fragmented, burdensome care Build feasible, sustainable approach to care of older adults with multiple conditions that addresses the modifiable contributors Planning Patient Priorities Care: Aims

26 Can Patient Priorities Care be implemented in practice? 2015-2018

27 Patient Priorities Care: Pilot
Process: Activate & train patients & clinicians Address workflow, practice change, decision-making Locations: 10 primary care providers & 5 cardiologists in central CT. Evaluation: Patient, clinician, health system outcomes: PPC vs. usual care

28 Progress building Patient Priorities Care:
Feasible process for helping patients identify their SMART health outcome goals and care preferences Workflow for incorporating patient priorities care into clinical practice Identified challenges faced in aligning care with patient’s goals & preferences Main challenge: Translating goals & preferences into care decisions

29 Develop & Implement (Translating prototype into practice):
What does health system need to do? What do patients need to do? What do clinicians need to do? Develop & Implement (Translating prototype into practice):

30 What patients need to know & do
Their health priorities: Health outcomes most important in face of tradeoffs What willing and able to do (healthcare preferences) Do: Active partner in decisions with their clinicians Do what say they willing and able to do What patients need to know & do

31 Specific Ask (One thing)
Specific ask (One Thing): If we could change one thing about my health or healthcare, it would be: My arthritis pain in my hands so that I can: cook and cut up things easier, it is hard I want to be less tired so that I can: walk more with my husband and have more energy in the mornings

32 Develop priorities identification process
Method: user-centered design framework, ideate  prototype  test redesign Development team: Baylor (Naik, Dindo), PPC team, patients, caregivers, & clinicians to develop & refine Products Value-based, collaborative goal (& preferences) setting process Training for facilitators Patient engagement process EHR template with health priorities Naik AD, J Am Ger Soc. 2018

33 Patient priorities identified
Member of care team help patients: Clarify Values Set SMART Goals Identify healthcare preferences Engage actively in their healthcare

34 Transmit Priorities Template to…
EHR Patient’s healthcar e team

35 What clinicians need to know & do
Know: Patients’ outcome goals & healthcare preferences Do: Engage patient, caregiver, & other clinicians in decision making aligned with priorities Stop, start, or continue care aligned with patients' goals & preferences, health trajectory What clinicians need to know & do

36 How do clinicians align care with patient priorities?: Methods
Participant observation Coaching huddles; emergent learning PPC team, training experts (ACP, Baylor), clinicians Identify key challenges & strategies Tinetti ME et al. submitted

37 A year with Mr. A through Patient Priorities Care
Before patient priorities care With patient priorities care ~ 20 visits /month 12 medications →tired, weak Check glucose daily, monthly blood tests Specialists want more tests & procedures (ICD) Can’t do what wants 9 visits/month 8 medications, less tired, weak Check glucose weekly Only tests & procedures consistent with his priorities (no ICD) Walks 2 blocks to babysit 3 y.o. grandson twice a week

38 How to align decisions & care with priorities?
Key Challenges…

39 Challenges aligning decision-making with patients’ priorities
Uncertainty, complexity, & multiplicity Where to start? No obvious best option Patient focus on symptoms; to many; cause(s) uncertain & not totally remediable Differing perspectives on what matters most Patient-Clinician: Current discomfort or treatment burden (e.g. antihypertensives) vs. future event (e.g. stroke) Clinician-Clinician Differ in what treatments to start, stop or continue Switch to patients’ priorities as focus of decision-making Revert to diseased-based decisions Need to follow guidelines Therapeutic inertia Challenges aligning decision-making with patients’ priorities

40 Other Challenges Disconnect between goal (outcome desired) and preferences (what able/willing to do) Unrealistic or unachievable goals Care preferences vague and not actionable Acute decision not addressed in patient’s priorities

41 How to align decisions & care with priorities?
Strategies that emerged…

42 Strategies for patient priorities -aligned decision-making
Begin with what matters most: Start with one actionable thing that matters most to the patient Sample script “If we could accomplish or change one thing in your health or healthcare, what would it be? What would you want to be doing more of if we could accomplish this?” Trial and Error: Conduct serial trials of starting, stopping, or continuing therapies (N of 1 trials) Measure benefit by patient’s health priorities Sample script “We can’t be sure what will work best for each person, but …we will work together to try different things if that’s ok. We’ll see what helps you (fill in patient’s desired goals)” Strategies for patient priorities -aligned decision-making

43 Strategies for patient priorities-aligned decision-making
Function over symptoms Focus on function and activities - health outcome goals - rather than symptoms Sample script “If you were in less pain (less dizzy, not so tired, weren’t so depressed), what would you be doing more of?” Priorities-based communication Use patient’s health outcome goals and care preferences (rather than diseases) to select and discuss care Sample script: “There are different things that we could do. But knowing your conditions, your overall health, and your health outcome goals and care preferences (what matters most to you), I suggest we try (fill in)”. Sample consult/referral: “Mr. B’s main concern is…his goals are… and he finds…too burdensome. Given her priorities, please recommend appropriate (tests, medications, procedure”) Strategies for patient priorities-aligned decision-making

44 Reconcile different perspectives/priorities
Agree on information to inform the decision patient’s priorities; burden of treatment; life situation, context; family concerns; coexisting conditions; health trajectory Reconcile different perspectives/ priorities between patient & clinician Present tradeoffs (unbiased) Be realistic about absolute benefits (2-3% absolute) Patients focus on today appropriate If patient understands alternatives, then accept decision Reconcile different perspectives/ priorities between clinicians Collaborative negotiations Accept that there is no one best answer Agree on information guiding decision Brainstorm compromise alternatives Strategies for patient priorities-aligned decision-making: Arrive at a shared decision

45 Feedback from pilot participants
What do patients think? “… I don't always know the wisest thing to focus on. Helps to discuss things to make up your mind. It also gives you options about what you can do to make your life and health better.” What do clinicians think? “…because I know what matters to her more than my goal to preserve her kidney function, I didn’t just increase her Lisinopril or something else I may have done...” “ This helps my relationship but I still get measured on BP, BMI, A1C…”

46 A few lessons learned so far
Prioritize: Focus on 1 thing that the patient really wants to work on (Specific Ask) Focus on function not symptoms (“If you were not in so much pain what would you do more of?) Link treatments to patient goal, “(patient goal)…is important to you, I know you don’t like…but are you willing to try it to see if it helps you…” Reality test unrealistic goals, “Can you meet this goal in a way that may be more doable for you?” Focus communication on goals & preferences, not just diseases and bad future events

47 Is PPC feasible and acceptable?
Time Reimbursement Communication Feasible: PDSA cycles → workflow Clinicians: All PCPs & cardiologists participate Patients: 203/ 262 (77%) invited patients agreed; >85% since Feb. 2017 Acceptable to: Is PPC feasible and acceptable?

48 Products to support Patient Priorities Care
Online curriculum to prepare health systems, clinicians, patients (with ACP) – in development Training & point-of-care materials for patients & priorities facilitators Decisional and communication tools (tips & scripts) for clinicians AGS/ACP/ACC multiple chronic conditions (how to) action steps – in development Future: self-directed health priorities elicitation *All current products available at PatientPrioiritiesCare.org

49 PatientPrioritiesCare.org: check back soon & often