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Medical Care Near the End of Life: Understanding Quality Qualitatively


'The science and art of medicine converge at the point where physicians meet ... Relieving burden on others. Strengthening relationships with loved ones ... – PowerPoint PPT presentation

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Title: Medical Care Near the End of Life: Understanding Quality Qualitatively

Medical Care Near the End of Life Understanding
Quality Qualitatively
  • Ken Rosenfeld, M.D.
  • Staff Physician, VA Greater Los Angeles
  • Assistant Professor of Medicine, UCLA

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Why Humanities?
  • Medium to understand important content areas
  • Ethics
  • Communication
  • Emotions
  • Existential issues
  • Therapeutic in fostering self-reflection and
    personal healing

The Arts and Medicine
  • The science and art of medicine converge at the
    point where physicians meet poets and artists
    the concern for the human condition
  • Lester Friedman, Ph.D.
  • Program in Communication and Medicine
  • Northwestern University

A historical perspective on end of life care
They endeavoured to do good, and to save the
lives of others. But we were not to expect that
the physicians could stop God's judgements . . .
it is not lessening their character or their
skill, to say they could not cure those that . .
. were mortally infected before the physicians
were sent for, as was frequently the case.
Daniel Dafoe
A Journal of the Plague
Year (1722)
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A brave new world?
  • The ongoing revolution in biomedical science
    is of an unprecedented magnitude, is accelerating
    dramatically, and promises almost unlimited
    opportunity for the betterment of humankind
  • Opportunities for medical research in the 21st
    century. JAMA. Feb 7 2001 285(5)533-4.

A brave new world?

Oh yeah. We see stuff like this in our ER all
the time... Guys come in all shot up like this,
all discombobulated and by the time they leave
theyre whistlin a tune. Billy, Chicago Hope
The Day of the Rope
The dying patients perspective . . .
  • What tormented Ivan Illych most was the
    deception, the lie, which for some reason they
    all accepted, that he was not dying but was
    simply ill, and that he only need keep quiet and
    undergo a treatment and then something very good
    would result.
  • The Death of Ivan Illych
  • Leo Tolstoy, 1886

SUPPORT Study JAMA 19952741591-1598
  • Main design
  • Observational study at 5 teaching hospitals
  • 9105 severely ill patients 6 month mortality 47
  • Phase 1 2-year observation without intervention
  • Phase 2 controlled trial of adding nurse

SUPPORT Study Main Results
  • 47 physicians knew patients DNR preference
  • 46 DNR orders written 2 days before death
  • 38 patients who died spent 10 days in ICU
  • 50 patients who died had moderate to severe pain
    for their last 3 days
  • Intervention had no impact on any major outcome

SUPPORT Study Main Conclusions
  • Significant problems with end of life care
  • Discussing/adhering to patient preferences
  • Many prolonged ICU deaths
  • Poor pain relief for those who die

End of Life Care for Children Dana Farber Study
  • Interviews with parents of children who died of
    cancer at Dana Farber Cancer Institute, Boston
  • 103 eligible parents interviewed
  • Wolfe J et al, Symptoms and suffering at the
    end of life in children with cancer. N Engl J Med

Dana Farber Study Results
  • 89 experienced a lot or a great deal of
    suffering from at least 1 symptom
  • 51 experienced a lot or a great deal of
    suffering from 3 or more symptoms
  • 21 were often afraid

How Does End-of-life Care Impact On Providers?
  • Objectives -- to learn providers perceptions of
    end-of-life care of hospitalized patients
  • Methods
  • 5 hospital survey -- 687 physicians 759 nurses
  • Medical and surgical attendings and housestaff
  • 123 items, validated, response rate over 60
  • Solomon M et al, Am. J. Public Health

Decisions Near the End of Life Main Results
  • Perceptions about end-of-life care
  • 46 had acted against their conscience
  • 70 housestaff acted against their conscience
  • 4x more frequently worried about overtreatment
    than undertreatment
  • Likely that pressures to treat aggressively cause
    providers to betray their conscience

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Caring for patients near the end of life why is
it so hard?
  • Uncertainty about prognosis
  • Decision to shift goals often irrevocable
  • Insufficient technical training
  • Medical culture regards death as failure
  • Suffering is difficult

What is Suffering?
  • The state of severe distress associated with
    events that threaten the intactness of a person.
  • An affliction of the person, not the body.
  • Cassell EJ. Diagnosing Suffering A
    Perspective. Ann Intern Med. 1999131531-534

What is Suffering?
  • To understand suffering we must understand the
    individual - to understand the impact of the
    physical state on the whole person.

Suffering and the Whole Person
Recognizing Suffering
  • Are you suffering?
  • Are there things that are worse than the pain?
  • What exactly are you frightened by?
  • What is the worst thing about all of this?

What does quality of care mean when a person is
  • Need to identify the following
  • The meaning of a good death
  • Attributes of providers (and the health care
    system) that facilitate a good death

Defining a good death
  • Focus groups of chronically ill, LTC residents
  • 5 dimensions of a good death
  • Pain/symptom management
  • Avoiding prolongation of dying
  • Achieving a sense of control
  • Relieving burden on others
  • Strengthening relationships with loved ones
  • Singer PA et al. Quality end-of-life care
    Patients perspectives.
  • JAMA. 1999281163-8

Defining a good death 2
  • Durham, NC study of chronically ill patients,
    bereaved family members, health professionals
  • Focus group methodology
  • Study results used in national survey
  • Steinhauser et. al. In search of a good death
    observations of
  • patients, families, and providers. Ann Intern
  • 2000132825-832.

Defining a good death 2 Results
  • Pain and symptom management
  • Preparation for death
  • Completion
  • Contributing to others
  • Affirmation of the whole person
  • Clear decision making

Defining a good death summary
  • Medical care dimension
  • Sx management
  • Circumstances surrounding death
  • Interpersonal dimension
  • Intrapersonal dimension
  • Sense of preparedness/control
  • Sense of meaning/a well-lived life

  • Oh, Lord, give us each his own death
  • Rainer Maria Rilke

Developmental tasks at the end of life
  • Sense of completion of worldly affairs
  • Sense of completion of relationships with
  • Sense of completion of relationships with
  • Sense of meaning in ones individual life
  • Sense of meaning of life in general

Developmental tasks at the end of life
  • Love of self
  • Love by others
  • Acceptance of the finality of life
  • Surrender to the unknown, letting go

Quality of care physician attributes
  • Seattle study of pts w/ advanced illness,
    bereaved family members, nurses, EOL MDs
  • 11 focus groups
  • Reflections on medical care pts had received
  • Curtis JR et al. Understanding physicians skills
    at providing
  • end-of-life care perspectives of patients,
    families, and health
  • care workers. J Gen Intern Med 20011641-9

Quality of care physician attributes Results
  • 12 dimensions, 55 specific components
  • Communication with patients
  • Emotional support
  • Accessibility/continuity
  • Competence
  • Respect/humility
  • Team communication/coordination

Quality of care physician attributes Results
  • Patient education
  • Personalization
  • Pain/symptom management
  • Inclusion/recognition of family
  • Attention to patients values
  • Support of patient decision making

Summary Quality of care at the end of life
  • Adherence to patient values/preferences
  • Symptom management
  • Continuity/coordination of care
  • Care for the whole person, including emotional
    and spiritual well-being
  • Family support
  • Circumstances around death home vs. hospital,
    ICU use, CPR/ventilation
  • Survival duration

  • A life ended with much unfinished business or
    uncontrolled suffering has not been met with due
    respect, and does not leave good memories.
  • Dame Cesily Saunders

Conclusion Advice From Avedis
  • It is the ethical dimension of individuals that
    is essential to a systems success. Ultimately,
    the secret of quality is love. You have to love
    your patient, you have to love your profession,
    you have to love your God. If you have love,
    then you can work backward to monitor and improve
    the system.
  • Avedis Donabedian. A Founder of Quality
    Assessment Encounters a Troubled System
    Firsthand. Health Affairs. Jan / Feb 2001