Defining and Reforming “End of Life” Care For the Citizen’s Working Group on Health Care...

Defining and Reforming “End of Life” Care

For the Citizen’s Working Group on Health Care Reform

Boston, Mass., August 17, 2005

Joanne Lynn

Jlynn@RAND.org

Why target “end of life” care to reform health care policy?

• It’s big – probably about 1/3 of lifetime expenses, and most of the lifetime’s suffering with ill health

• It’s bad – care is unreliable, often harmful

• It’s ugly – no political leadership yet has the will to confront the challenges of frailty, dementia, caregiver burden, supportive housing, impoverishment

By permission of Johnny Hart and Creators Syndicate, Inc.

How Americans Die: A Century of Change 1900 2000

Age at death 46 years 78 years

Top Causes Infection Cancer

Accident Organ system failure

Childbirth Stroke/Dementia

Disability Not much 2-4 yrs before death

Financing Private, Public and substantial- modest 83% in Medicare

~½ of women die in Medicaid

Good Models to Predict Survival Time Show Remarkable Ambiguity Near Death

Medians of Predictions Estimated from Data on These Days before Death

Med

ian

2-m

on

th S

urv

ival

Est

imat

e

0.0

0.2

0.4

0.6

0.8

1.0

7 6 5 4 3 2 1

Lung cancer

Congestive heartfailure

Severity of Illness, not Prognosis

• Prognosis often uncertain, right up to the end of life

Median patient with serious chronic heart failure has 50-50 chance to live 6 months on the day before death

• Severity of patient condition dictates needs• Most patients need both disease-modifying

treatments and help to live well with disease

death

Palliative Care

Tre

atm

en

t

Aggressive Care

Time

Old Concept

death

Symptom management “palliative”

Tre

atm

en

t

Disease-modifying “curative”

Time

Better Concept

Bereavement

The Center to Improve Care of the Dying

Most health care provision has been organizedby program/site

Hospital Doctor’s office Nursing home Hospice etc.

The Center to Improve Care of the Dying

Most medical knowledge has been organized by disease

Hypertension

Diabetes

Stroke

Alzheimer’s Dementia

etc.

The Center to Improve Care of the Dying

Quality = performance in one setting, one disease

Hospital Doctor’s office Nursing home Hospice etc.Medical category

Service category

Hypertension

Diabetes

Stroke

Dementia

etc.

But people with serious chronic illness have multiple diagnoses and need multiple service settings

Divisions by Health Status in the Population

Chronic, not “serious”“Healthy,” needs acute and preventive care

Chronic, progressive, eventually fatal illness

Group 2

Group 1Group 3

Target population for better “End of Life Care”

1. Very sick (disabled, dependent, debilitated)

2. Generally getting worse

3. Will die without a period of being well again

4. Most likely will die from progression of current illness(es)

Divisions in the Population Major Trajectories near Death

Chronic, not “serious”“Healthy,” needs acute and preventive care

Chronic, progressive, eventually fatal illness

Figure 1. Divisions by Health Status in the Population and Trajectories of Eventually Fatal Chronic Illnesses

Group 2

Group 1Group 3

A

B

C

Medicare Decedents

Other 9%

Sudden 7%

Heart and Lung

Failure 16%

Cancer 22%

Frail 46%

MediCaring Proposal – Core elements

• Eligibility – thresholds of severity• Services –

comprehensiveness continuity mostly at home

• Coverage – includes capitation or salary/budget

• Quality - measured and reported

Medicare Coverage of Services,Contrasted with Importance to “end of life” Patients

Medicare Covers Well – But Less Important

Hospitalization

ER/ambulance

MD in office

MD in hospital

Diagnostic tests

Care Coordination

Self-care

Medications

MD at home

Nursing care at home

Medicare Mostly Does Not Cover– But Very Important

“Every system is perfectly designed

to get the results

it gets”

-----from P. Bataldin

The Center to Improve Care of the Dying

What Good Care Systems Should PROMISE

Help to live fully

Correct Rx

Family Role

CustomizeSymptoms

Gaps

Surprises

Population Characteristics 

Priority Concerns 

1. Healthy Stay well

2. Chronic condition Prevent or delay progression

3. Maternal and infant Safe start

4. Stable, disabled Life opportunities

5. Acutely ill Get well

6. EOL, short decline near death (mostly cancer)

Symptoms, Dignity, Control,Life closure, Reliability

7. EOL, intermittent exacerbations with sudden dying (mostly heart/lung failure)

Avoid episodes, Longevity, Control Rx, Support carers

8. EOL, long dwindling course (mostly frailty and dementia)

Carer support, Dignity, Skin integrity, Mobility, Housing

Changing Policy and Practice

• Require continuity, 24/7, advance planning– Conditions of participation or enhanced payment

• Value comfort and control– Reporting for quality

• Enhance relationships, closure, spirituality– Reporting for quality

• Support family and paid direct caregivers– Financial security, health insurance, training