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Conversations at the Crossroads

Joanne Lynn, MD, Director

Altarum InstituteCenter for Elder Care and

Advanced Illness“From SUPPORT to

Effective Reform”Center for Practical Bioethics

April 10,2013Kansas City MO

5th 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)

http://www.nhdd.org

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, MSDirector, Center for Elder Care and Advanced Illness

Joanne.Lynn@Altarum.org

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Study toUnderstand

Prognoses andPreferences for

Outcomes andRisks of

Treatments

JAMA 1995; 274:20:1591-1598

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Description of Decision-Making

Interviewed Patients/Surrogates Told Us PhysiciansDid Not Discuss CPR During Hospitalization

70%

JAMA 1995; 274:20:1591-1598

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Description of Decision-Making

Late DNR Orders: Written Within 2 days of Death

46%

JAMA 1995; 274:20:1591-1598

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Patients Dying in Hospital Prolonged Suffering: A week or more

in ICU, in Coma, or on Ventilator

50%

JAMA 1995; 274:20:1591-1598

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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; 274:20:1591-1598

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Patients Dying in Hospital Families Who Used All

or Most Savings

31%

SUPPORTJAMA 1994; 272:73:1839

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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

0.0

0.2

0.4

0.6

0.8

1.0 CHF

Lung Cancer

6 5 4 3 2 1

Median Prognosis by Day Before Death for Lung Cancer and CHF, in SUPPORT

Days before Death

Med

ian

2-m

onth

Sur

viva

l Est

imat

e

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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; 274:20:1591-1598

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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 FailureU.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

Yes

No

No

Initiate diuretics

Yes

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?

No

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 FailureU.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

No

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US Hospitalist PhysiciansViews on Terminal Sedation

0%10%20%30%40%50%60%70%80%90%

100%

Want Sedation for self

Offer Sedation toPatient

Lynn, Goldstein, Annals Int Med, May 20,2003

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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

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My Mother’s Broken Back

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The Cost of a Collapsed Vertebra in Medicare

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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.

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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!

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U.S. consumption (private plus public in-kind transfers), 1960, 1981, and 2007(Ratio to average labor income ages 30-49).

0

0.5

1

0 10 20 30 40 50 60 70 80 90

1960

0

0.5

1

0 10 20 30 40 50 60 70 80 90

1981

0

0.5

1

0 10 20 30 40 50 60 70 80 90

2007

Public Other

Private Other

Owned HousingPrivate Health

PublicHealth

Public Education

Private Education

22Source: U.S. National Transfer Accounts, Lee and Donehower, 2011. Also in Aging and the Macroeconomy, National Academy of Sciences, 2013

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About the Frail Elder Cohort

Three common definitions:1. Multiple chronic conditions2. Losing muscle strength3. Functional disability

All definitions overlap a lot,Practically, combine some of these: a. Age (or Medicare)b. Functional disabilityc. Serious chronic conditiond. Hospitalization or equivalent

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2. Required: Individual Care Plan

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Articulated Values Plan Implement

Outcomes

Goals Integration

Feedback Feedback

Evaluation of Quality

About Customized Service Plans

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Articulated Values Plan Implement

Outcomes T1

Articulated Values Plan Implement

Outcomes T2

TIME

Service Plans for Complex Chronic Illness

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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

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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

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3. Appropriate Services

▲Continuity, reliability, trustworthiness

▲Planning ahead

▲Caregiver assessment and support

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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)

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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

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4. The Scope: A New “Rebalancing”

▲Has been from nursing home to community

▲Needs to be from medical services to social/environmental services

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Health-service and social-services expenditures for OECD countries, 2005, as % GDP

BMJ Qual Saf 2011;20:826e831.

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Health-service and social-services expenditures for OECD countries, 2005, as ratio

BMJ Qual Saf 2011;20:826e831.

US level

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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

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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

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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….

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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…

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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

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What do you think?

What COULD you do?

What WILL you do?

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We can have what we want and needWhen we are old and frail….

But only if we deliberately build that future!

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“Unless someone like you

cares a whole awful lot,

Nothing is going to get better. It's not.”

― Dr. Seuss, The Lorax