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Making the Model T: From Prototypes to Routine Good Care for ‘Fatal Chronic Illness’. Joanne Lynn, MD, MA, MS Director, The Washington Home Palliative Care Institute President, Americans for Better Care of the Dying www.medicaring.org ; www.abcd-caring.org May 2002.

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making the model t from prototypes to routine good care for fatal chronic illness

Making the Model T:From Prototypes to Routine Good Care for ‘Fatal Chronic Illness’

Joanne Lynn, MD, MA, MS

Director, The Washington Home Palliative Care Institute

President, Americans for Better Care of the Dying

www.medicaring.org; www.abcd-caring.orgMay 2002

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, most likely from progression of current illness
  • (NOT – those who are sure to die soon)
slide3

Time

Old Concept

death

Treatment

Aggressive Care

Palliative Care

slide4

Time

Better Concept

death

Disease-modifying “curative”

Treatment

Symptom management “palliative”

Bereavement

slide5

Multivariable Models for Very Sick Patients

Cannot Predict Time of Death Precisely

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

health status of the population a conceptual model
Health Status of the Population(a conceptual model)

Chronic Illnessconsistent with usual role –

need acute and preventive care

HealthyNeed acute and preventive care

Chronic, progressive,eventually fatal illness

Need variety of services and priorities

1-2% <65 yo, 3-5% >65 yo

rough estimate of costs per decile over the lifespan
Rough Estimate of Costs per Decile over the lifespan*

thousands

Deciles

  • *Places all costs of normal reproduction with the babies.
  • Estimates are medians of estimates of physicians and policy researchers in a convenience sample, except for the last decile,
  • The last decile’s estimate are derived from Lubitz et al and from MedPAC report 2000.
slide9

Surprises

Symptoms

Gaps

What Good Care Systems Should PROMISE

Correct Rx

Help to live fully

Customize

Family Role

cancer trajectory diagnosis to death
“Cancer” Trajectory, Diagnosis to Death

Cancer

High

Possible hospice enrollment

Function

Low

Death

Onset of incurable cancer

Time

-- Often a few years, but decline usually < 2 months

organ system failure trajectory
Organ System Failure Trajectory

(mostly heart and lung failure)

High

Function

Low

Death

Begin to use hospital often, self-care becomes difficult

Time

~ 2-5 years, but death usually seems “sudden”

slide12

Dementia/Frailty Trajectory

High

Function

Low

Death

Onset could be deficits in ADL, speech, ambulation

Time

Quite variable -

up to 6-8 years

medicare decedents

Sudden 7%

Other 9%

Cancer 22%

Frail 46%

Heart and Lung Failure 16%

Medicare Decedents
creating the will for change
Creating the Will for Change
  • Publicize local gems and national “best practices” (see “Promises to Keep” and “Improving Care for the End of Life”)
  • Public education – media, internet, brochures
  • Measure local performance
make improvements happen
Make Improvements Happen
  • Support regional quality improvement
  • Lead regional cooperation in practices, standards, forms
  • Create authorities with population scope (and data)
  • Advocate for and fund innovation and evaluation
  • Institute special programs -- care management or caregiver training and support
make improvement sustainable
Make Improvement Sustainable
  • Pay for or publicize good performance
  • Pay MUCH less for easily spotted poor performance – no advance care planning, or untreated pain, or low rates of use of hospice
  • Change Medicare payment – part of legislative agenda
  • Develop feedback loops that inform practitioners about individual patients and general performance
  • Create regional information systems
  • Create regional 24/7 on-call with nurses to the home/nursing home
  • Train aides, professionals
current priorities for medicare reform
Current Priorities for Medicare Reform
  • Caregiver support – allow caregiver buy-in to Medicare, tax credits, training, pay, respite
  • Risk adjust by severity (not just diagnosis) for Medicare managed care
  • Develop societally supported methods to limit use of high-cost but effective treatments like defibrillators and engineered drugs
  • Correct the misleading categorizations of cause of death and diagnoses in the last phase of life – e.g., heart failure and coronary artery disease
  • Pay less for inept care – for failing to make plans, or failing to treat pain
  • Develop epidemiology to track changes over time and compare populations
  • Make shortcomings and improvements visible to professionals and the public
summary on making end of life a national priority condition
Summary on making “end of life” a national priority condition
  • Large Population – and doubling in the next quarter century.
  • Care is unreliable and often harmful.
  • Better care arrangements are known or could readily be learned.
  • Costs of reliably good care are probably not much different.
  • Reform requires forging the will to drive change.
  • Therefore – a promising priority condition.