Defining and Reforming End of Life Care

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Defining and Reforming End of Life Care

• For the Citizens Working Group on Health Care
  Reform
• Boston, Mass., August 17, 2005
• Joanne Lynn
• Jlynn_at_RAND.org

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

• Its big probably about 1/3 of lifetime
  expenses, and most of the lifetimes suffering
  with ill health
• Its bad care is unreliable, often harmful
• Its ugly no political leadership yet has the
  will to confront the challenges of frailty,
  dementia, caregiver burden, supportive housing,
  impoverishment

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By permission of Johnny Hart and Creators
Syndicate, Inc.
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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
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Good Models to Predict Survival Time Show
Remarkable Ambiguity Near Death
1.0
0.8
Congestive heartfailure
0.6
Median 2-month Survival Estimate
0.4
Lung cancer
0.2
0.0
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6
5
4
3
2
1
Medians of Predictions Estimated from Data on
These Days before Death
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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

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Old Concept
death
Treatment
Palliative Care
Aggressive Care
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Better Concept
death
Disease-modifying curative
Treatment
Symptom management palliative
Bereavement
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Most health care provision has been organized by
program/site
Hospital Doctors office Nursing home
Hospice etc.
The Center to Improve Care of the Dying
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Most medical knowledge has been organized by
disease
Hypertension Diabetes Stroke Alzheimer
s Dementia etc.
The Center to Improve Care of the Dying
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Quality performance in one setting, one disease
Service category
Medical category
Hospital Doctors office Nursing
home Hospice etc.
Hypertension Diabetes Stroke Dementia etc.
But people with serious chronic illness have
multiple diagnoses and need multiple service
settings
The Center to Improve Care of the Dying
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Divisions by Health Status in the Population
Group 2
Healthy, needs acute and preventive care
Chronic, not serious
Group 1
Group 3
Chronic, progressive, eventually fatal illness
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Target population for better End of Life Care

• Very sick (disabled, dependent, debilitated)
• Generally getting worse
• Will die without a period of being well again
• Most likely will die from progression of current
  illness(es)

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Figure 1. Divisions by Health Status in the
Population and Trajectories of Eventually Fatal
Chronic Illnesses
Divisions in the Population
Major Trajectories near Death
A
Group 2
Healthy, needs acute and preventive care
Chronic, not serious
Group 1
Group 3
B
Chronic, progressive, eventually fatal illness
C
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Medicare Decedents
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MediCaring Proposal Core elements

• Eligibility thresholds of severity
• Services
• comprehensiveness
• continuity
• mostly at home
• Coverage includes capitation or salary/budget
• Quality - measured and reported

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Medicare Coverage of Services,Contrasted with
Importance to end of life Patients
 
Medicare Covers Well But Less Important
Medicare Mostly Does Not Cover But Very
Important
Care Coordination Self-care Medications MD at
home Nursing care at home
Hospitalization ER/ambulance MD in office MD in
hospital Diagnostic tests
 
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Every system is perfectly designed
to get the results it
gets -----from P. Bataldin
The Center to Improve Care of the Dying
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What Good Care Systems Should PROMISE
Correct Rx
Help to live fully
Customize
Family Role
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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