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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
Why Humanities?
• Medium to understand important content areas
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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)
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
they’re whistlin’ a tune.”
Billy, Chicago Hope “The Day of the Rope”
The dying patient’s 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 1995;274:1591-1598
• 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
educator
SUPPORT Study
Main Results
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47% physicians knew patient’s 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 2000;342:326-333.
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 1993;83:14-23
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
Caring for patients near the end
of life – why is it so hard?
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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. 1999;131:531-534
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
Physical
Social
Psychological
Spiritual
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 dying?
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
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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. 1999;281:163-8
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 Med.
2000;132:825-832.
Defining a good death: #2
Results
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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
community
• Sense of completion of relationships with
family/friends
• Sense of meaning in one’s 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 2001;16:41-9
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 (cont.)
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Patient education
Personalization
Pain/symptom management
Inclusion/recognition of family
Attention to patient’s values
Support of patient decision making
Summary: Quality of care at the end of life
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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
Conclusion
“ 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 system’s 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 20(1):137-141.