1 Conversations at the Crossroads Joanne Lynn, MD, Director Altarum Institute Center for Elder Care and Advanced Illness “From SUPPORT to Effective Reform” Center for Practical Bioethics April 10,2013 Kansas City MO

5 th Annual National Healthcare Decisions Day to inspire, educate, and empower the public and providers about the importance of advance care planning April 16, 2012 (Death and Taxes) Presentation by: Center for Elder Care and Advanced Illness For Altarum Staff—April 24, 2012 Effective Health Care Reform for When We are Frail and Old Joanne Lynn, MD, MA, MS Director, Center for Elder Care and Advanced Illness

3 S tudy to U nderstand P rognoses and P references for O utcomes and R isks of T reatments JAMA 1995; 274:20:

4 Description of Decision-Making Interviewed Patients/Surrogates Told Us Physicians Did Not Discuss CPR During Hospitalization 70% JAMA 1995; 274:20:

5 Description of Decision-Making Late DNR Orders: Written Within 2 days of Death 46% JAMA 1995; 274:20:

6 Patients Dying in Hospital Prolonged Suffering: A week or more in ICU, in Coma, or on Ventilator 50% JAMA 1995; 274:20:

7 Conscious Patients Dying in Hospital Experienced Moderate or Severe Pain at Least Half of the Time Within Their Last Few Days 50% (by family report) JAMA 1995; 274:20:

8 Patients Dying in Hospital Families Who Used All or Most Savings 31% SUPPORT JAMA 1994; 272:73:1839

9 About Advance Directives in SUPPORT ▲ Only 12% of ADs had physician counseling ▲ Only 42% of ADs had been discussed with a physician ▲ Physicians were aware of only one in four ADs

CHF Lung Cancer Median Prognosis by Day Before Death for Lung Cancer and CHF, in SUPPORT Days before Death Median 2-month Survival Estimate

11 Results – Phase II Intervention did not improve Communication between physicians and patients/families Physician understanding that patient wanted to avoid CPR Timing of DNR orders Days spent in ICUs, in coma, or on ventilator prior to dying Pain control Hospital resources used JAMA 1995; 274:20:

12 Selected Lessons from SUPPORT – Joanne Lynn version ▲ Excellent information and skilled counseling was insufficient to overcome habit and culture ▲ Planning ahead was not valued and too non- specific to make much difference ▲ Advance planning helped families some ▲ Prognosis remains uncertain until near death ▲ Pain is a tough target ▲ Costs affect even the well-insured

Clinical Algorithm for Evaluation and Care of Patients with Heart Failure U.S. Department of Health and Human Services, AHCPR Patient Presents with symptoms of Heart Failure Initial Evaluation Alternative Diagnosis Identified? Require Hospital Management Clinical volume overload? Measure LV function Ejection fraction >35- 40% No Not covered by this guideline Yes No Initiate diuretics Yes Consider diastolic dysfunction No Patient and family counseling Initial pharmacological management Contraindication to revascularization Yes Counseling and decision No angina but MI No angina and no MI Revascularization acceptable Angina No Counseling and decision Physiological test: significant positive findings? Coronary angiogram: significant positive findings? NoNo Counseling and decision Revascularize Good Outcome? Continue medical management Refer for evaluation for heart transplant Candidate for heart transplant yes Additional pharmacological management No Follow-up Yes No

Clinical Algorithm for Evaluation and Care of Patients with Heart Failure U.S. Department of Health and Human Services, AHCPR Counseling and Decision Continue medical management Revascularize Good Outcome? Follow- up Yes Additional Pharmacological Management Candidate for heart transplant Evaluation for heart transplant Yes No

15 US Hospitalist Physicians Views on Terminal Sedation Lynn, Goldstein, Annals Int Med, May 20,2003

16 New occasions teach new duties; time makes ancient good uncouth; They must upward still and onward who would keep abreast of truth. James Russell Lowell

17 My Mother’s Broken Back

18 The Cost of a Collapsed Vertebra in Medicare

19 STRONG CLAIMS FOR SERIOUS REFORM 1. We are buying the wrong product, and we should not focus on re-financing that purchase but on revising the product (and the price). 2. We can have what we want and need when old and frail, at a dramatic reduction in per capita cost, but only through deliberate redesign of the service delivery arrangements 3. We cannot keep doing what we are now doing. Without reform, we will have to learn to turn away from elderly people, even those who have no other options.

20 What We Really, Really Need… 1. The Cohort – Frail elderly 2. The Care Plan – For each frail person, at all times 3. The Services - Adapted 4. The Scope – Social services equally important 5. Local Monitoring & Management- AND THE WILL TO MAKE THESE CHANGES!

21

22 U.S. consumption (private plus public in-kind transfers), 1960, 1981, and 2007 (Ratio to average labor income ages 30-49). 22 Source: U.S. National Transfer Accounts, Lee and Donehower, Also in Aging and the Macroeconomy, National Academy of Sciences, 2013

23 About the Frail Elder Cohort Three common definitions: 1.Multiple chronic conditions 2.Losing muscle strength 3.Functional disability All definitions overlap a lot, Practically, combine some of these: a.Age (or Medicare) b.Functional disability c.Serious chronic condition d.Hospitalization or equivalent

24 2. Required: Individual Care Plan

25 Articulated Values Plan Implement Outcomes Goals Integration Feedback Evaluation of Quality About Customized Service Plans

26 Articulated Values Plan Implement Outcomes T 1 Articulated Values Plan Implement Outcomes T 2 TIME Service Plans for Complex Chronic Illness

27 URGENT NEEDS for CARE PLANS ▲ Develop demand for multi-dimensional understanding of the situation, and person-centered care plans ▲ Develop processes that regularly produce them ▲ Develop feedback loops for real-time evaluation of merits ▲ Develop quality measures that assess system performance ▲ Use good care plans in system design

28 What about an "Advance Care Plan?" ▲ Natural to consider lifespan and dying as part of care planning ▲ Include emergency plans like POLST ▲ Designate surrogate decision-maker(s) ▲ Document along with care plan ▲ Update and feedback as for other plan elements

29 3. Appropriate Services ▲ Continuity, reliability, trustworthiness ▲ Planning ahead ▲ Caregiver assessment and support

30 Encourage Geographic Concentration? ▲ Services to homes can be more efficient if allowed to be geographically concentrated ▲ Can utilize local strengths, solve local issues ▲ (However - Must address risks of monopolies)

31 Disaster for the Frail Elderly: A Root Cause Inappropriate Unreliable Unmanaged Wasteful “care” Social Services Funded as safety net Under-measured Many programs, many gaps Medical Services Open-ended funding Inappropriate “standard” goals Dysfunctional quality measures No Integrator

32 4. The Scope: A New “Rebalancing” ▲ Has been from nursing home to community ▲ Needs to be from medical services to social/environmental services

33 Health-service and social-services expenditures for OECD countries, 2005, as % GDP BMJ Qual Saf 2011;20:826e831.

34 Health-service and social-services expenditures for OECD countries, 2005, as ratio BMJ Qual Saf 2011;20:826e831. US level

35 Local level– not just state/federal (and provider) ▲ Frail elders are tied to where they live ▲ Local leadership responds to local factors ▲ Localities can engender and use largely off-budget services ▲ Localities can address environmental issues ▲ Localities can address employer issues for caregivers ▲ Having some local governance still requires having oversight and most financing at federal/state levels

36 5. What will a local manager need? ▲ Tools for monitoring – data, metrics ▲ Skills in coalition-building and governance ▲ Visibility, value to local residents ▲ Funding – perhaps shared savings ▲ Some authority to speak out, cajole, create incentives and costs of various sorts ▲ A commitment to efficiency as well as quality

37 How could local management arise? ▲ Care Transitions ▲ Age-friendly cities and other urban planning ▲ Local coalition building for healthy communities – CDC-engendered coalitions ▲ Public health ▲ Local aging authorities – commissions, offices ▲ Area Agencies on Aging (and Administration for Community Living) ▲ And more….

38 If we had… 1. The Cohort - Services and processes tailored to frailty 2. The Services – Appropriate for frail elders 3. The Care plans – Negotiated for each frail elder 4. The Scope - Include long term supports and services 5. The local monitor- manager THEN – My mother, and Your mother, would have…

39 Some possibilities for action ▲ Help family caregivers to complain…loudly! ▲ Require care plans for frail, disabled elders in conditions of participation, Meaningful Use 3, Duals demos, special needs plans ▲ Learn to measure quality, institute feedback loops ▲ Renew the Older Americans Act ▲ Enable localities to develop monitors and management ▲ Bring direct care workers under fair labor laws ▲ Require Medicare providers to standardize processes and measures ▲ Test a structured benefit for MediCaring at home ▲ Test offering long-term care coverage at retirement

40 What do you think? What COULD you do? What WILL you do?

41 We can have what we want and need When we are old and frail…. But only if we deliberately build that future!

42 “Unless someone like you cares a whole awful lot, Nothing is going to get better. It's not.” ― Dr. Seuss, The LoraxDr. SeussThe Lorax