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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?.

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defining and reforming end of life 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

[email protected]

why target end of life care to reform health care policy
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
how americans die a century of change
How Americans Die: A Century of Change

19002000

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

slide5
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

7

6

5

4

3

2

1

Medians of Predictions Estimated from Data on These Days before Death

severity of illness not prognosis
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
slide7
Time

Old Concept

death

Treatment

Aggressive Care

Palliative Care

slide8
Time

Better Concept

death

Disease-modifying “curative”

Treatment

Symptom management “palliative”

Bereavement

slide9
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

slide10
Most medical knowledge has been organized by disease

Hypertension

Diabetes

Stroke

Alzheimer’s Dementia

etc.

The Center to Improve Care of the Dying

slide11
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

slide12
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

target population for better end of life care
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)
slide14
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

medicare decedents
Sudden 7%

Other 9%

Cancer 22%

Frail 46%

Heart and Lung Failure 16%

Medicare Decedents
medicaring proposal core elements
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 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

slide21
“Every system is perfectly designed

to get the results

it gets”

-----from P. Bataldin

The Center to Improve Care of the Dying

slide22
Surprises

Symptoms

Gaps

What Good Care Systems Should PROMISE

Correct Rx

Help to live fully

Customize

Family Role

slide23
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
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
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