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


  • Time

    Old Concept

    death

    Treatment

    Aggressive Care

    Palliative Care


    Time

    Better Concept

    death

    Disease-modifying “curative”

    Treatment

    Symptom management “palliative”

    Bereavement


    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.



    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”


    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.


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