defining and reforming “end of life” care for the citizen’s working group on health care...
TRANSCRIPT
Defining and Reforming “End of Life” Care
For the Citizen’s Working Group on Health Care Reform
Boston, Mass., August 17, 2005
Joanne Lynn
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