Transcript Document

Defining and Reforming
“End of Life” Care
For the Citizen’s Working Group on Health
Care Reform
Boston, Mass., August 17, 2005
Joanne Lynn
[email protected]
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
Accident
Childbirth
Cancer
Organ system failure
Stroke/Dementia
Disability
Not much
2-4 yrs before death
Financing
Private,
modest
Public and substantial83% in Medicare
~½ of women die in
Medicaid
Median 2-month Survival Estimate
1.0
Good Models to Predict Survival Time Show
Remarkable Ambiguity Near Death
0.8
Congestive heart
failure
0.6
0.4
Lung cancer
0.2
0.0
7
6
5
4
3
2
Medians of Predictions Estimated from Data on These Days before Death
1
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
Old Concept
death
Treatment
Aggressive Care
Time
Palliative Care
Better Concept
death
Disease-modifying “curative”
Treatment
Symptom management
“palliative”
Time
Bereavement
Most health care provision has been organized
by 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
Service
category
Medical
category
Hospital
Doctor’s 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
Divisions by Health Status in the Population
Group 2
Group 1
Group 3
Target population for better “End of
Life Care”
1.
2.
3.
4.
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)
Figure 1. Divisions by Health Status in the Population and
Trajectories of Eventually Fatal Chronic Illnesses
Divisions in the Population
Major Trajectories near Death
Cancer
Function
High
A
Group 2
Low
death
Time
High
Group 3
B
Low
death
Time
High
C
Dementia/Frailty
Function
Group 1
Function
Organ System Failure
death
Low
Time
Cancer Trajectory, Diagnosis to Death
Cancer
Function
High
Low
death
Time
Organ System Failure Trajectory
Function
High
Low
death
Time
Function
High
Dementia/Frailty Trajectory
death
Low
Time
Medicare Decedents
Other
9%
Sudden
7%
Cancer
22%
Frail
46%
Heart and
Lung Failure
16%
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
Medicare Mostly Does Not Cover
– But Very Important
Hospitalization
Care Coordination
ER/ambulance
Self-care
MD in office
Medications
MD in hospital
MD at home
Diagnostic tests
Nursing care at home
“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
Correct Rx
Symptoms
Gaps
Surprises
Help
to
live
fully
Customize
Family Role
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)
8. EOL, long dwindling course (mostly frailty
and dementia)
Avoid episodes, Longevity,
Control Rx, Support carers
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