Transcript Stanford Faculty Development Program for End-of

ELC Curriculum for Medical
Teachers
Death and Dying in the U.S.A.
Pain Management
Communicating with Patients and Families
Making Difficult Decisions
Non-Pain Symptom Management
Venues and Systems of Care
Psychiatric Issues and Spirituality
Instituting Change
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Introductions
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Brief Overview of End-of-Life
Care
How are we doing in end-of-life care (ELC) in this
country?
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Why a Course in ELC is
Needed
• End-of-life care is neglected in physician training
• Studies show significant deficiencies in care
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Self-Rating Exercise I
(Self-Rating Scale: 1 = Low to 5 = High)
Knowledge, Skills, Attitudes Confidence to Teach
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5
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Module Titles
Overview: Death and Dying
in the U.S.A.
Pain Management
Communicating with Patients
and Families
Making Difficult Decisions
Non-Pain Symptom
Management
Venues and Systems of Care
Psychiatric Issues and
Spirituality
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Module #1
5
Self-Assessed Knowledge
Rating Study
• Most physicians lack knowledge about the
physical changes of dying
• On a scale of 1 - 5, the mean self-assessed
knowledge rating of interns on physical changes
of dying was 1.70
—The lowest score of 6 items rating clinical expertise
Hallenbeck and Bergen, 1999
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Overall Goals of the Course
• To enhance physician skills in ELC
• To foster a commitment to improving care for the
dying
• To improve the dying experience for patients,
families, and health care providers
• To improve teaching related to ELC
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END-OF-LIFE CARE:
Module 1
Death and Dying in the U.S.A.
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Who dies where, and when
Patterns of death and prognostication
The ‘good death’
Experiences with the dying
The last 48 hours
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Learning Objectives
Module 1: Death and Dying in the U.S.A.
– Describe how and where people die in the U.S.A.
– Identify patterns of dying and related issues of
prognosis
– Identify the characteristics of what a ‘good’ death
might be for different populations and for yourself
– Increase your understanding of events in the last 48
hours of life
– Incorporate this content into your clinical teaching
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Top Five Causes of Death
2000
1900
Influenza, pneumonia
Tuberculosis
Gastritis, enteritis
Heart Disease
Stroke
11.8%
11.3%
8.3%
8.0%
6.2%
Brim et al., 1970
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Heart Disease
Cancer
Stroke
COPD
Accidents
25.7%
20.0%
6.0%
4.5%
3.4%
Minino & Smith, 2001
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Where We Die
6%
20%
17%
57%
Residence
Nursing Home
Hospital
Other
1992 Data, IOM 1997
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Dying in the U.S.A.:
Epidemiology & Economics
Annual deaths (2000): 2.40 million
Percentage in Hospice: 17%
– Up from 11% in 1993
Expense of dying (1987):
– 0.9% of population
– Last six months cost: $44.9 billion (in 1992 dollars)
– This is 7.5% of total personal health care expenditures
Cohen et al., 1995
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Dying is Largely Publicly
Funded in U.S.A.
• 70% of people dying are covered by Medicare
• 13% of Medicare recipients also receive
Medicaid
Gornick et al., 1996
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Economic Impact on Families
by a Death in the Family
30% of families are impoverished by the process
of dying
Covinsky, 1994
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The Facts of Life About Dying
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2.4 million people die annually in U.S.
70% of these covered by Medicare
$44.9 billion annual cost
Only 48% of that comes out of Medicare
30% of families are impoverished by a death
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Trajectory of Steady Decline
100%
Functional
Status
6 months
0
Time
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Other Dying Trajectories
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Brainstorm
Implications of different trajectories of dying
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Different Dying Trajectories
Affect…
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Our ability to predict who is dying
Reimbursement systems
Where people die
Medical needs of dying patients
The impact of the dying process on patient and
family
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Fantasy Death Exercise
What are your criteria for a ‘good’ death?
The only hitch, as in life, is that you have to die.
Imagine you are there right now.
Notice where you are, what your are doing, who is
with you, what it is like, perhaps sounds, smells,
other sensory specifics…
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Discussion
Themes for a ‘good’ death
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Themes for a ‘Good’ Death
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Home
Comfort
Sense of completion (tasks accomplished)
Saying goodbye
Life-review
Love
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Common Ideal Death
Scenarios
• Sudden death in sleep
• Dying at home
• Dying engaged in meaningful activity
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Dying Involves a Lot of People
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Discussion
• What do these themes and scenarios imply for
our work as physicians?
• Few ‘ideal’ deaths contain medical settings or
staff
• What does this mean to us, and how do we deal
with it?
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Experiences with Dying
• How many dying patients have you cared for?
• Think of a particularly memorable case
What made it memorable to you?
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Discussion of Cases
Attributes of dying well and problematic dying
Positive Themes
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Negative Themes
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The Last 48 Hours
• How do you know a person is dying?
• What are some of the signs of imminent death?
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Signs that Suggest Active
Dying
• No intake of water or food
• Dramatic skin color changes
• Respiratory mandibular movement (RMM)
• Sunken cheeks, relaxation of facial muscles
• Rattles in chest
• Cheyne-Stokes respirations
• Lack of pulse
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SUPPORT Study N=9105
• < 40% had discussed CPR preferences
• 49% wanting CPR withheld did not have DNR
orders
• 50% of all DNR orders written within last 48
hours of life
• 50% were assessed with moderate to severe
pain half of the time during last 3-days of life
Lichter and Hunt, 1990
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Most Hospice Deaths Judged
Peaceful
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91.5% of deaths peaceful
New pain in 29.5% of cases
Pain exacerbated in 21.5% of cases
No patient experienced persistent, severe pain
91% of patients were on opioids
Lichter and Hunt, 1990
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Symptoms & Signs in the Last
48 Hours
Symptom
Noisy, moist breathing
Urinary incontinence
Urinary retention
Pain
Restlessness, agitation
Dyspnea
Nausea, vomiting
Sweating
Jerking, twitching
Confusion
Percent
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08
Lichter and Hunt, 1990
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Events of the Last 48 Hours
Orderly loss of the senses and desires
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Hunger
Thirst (but persistent dry mouth)
Speech
Vision
Hearing and touch
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Loss of Hunger
• Families tend to want to nurture
• A basic way to nurture is to feed
• Families may be distressed if patient doesn’t eat
- Distress arises from:
• Inability to nurture loved one who is dying
• Fear that patient is ‘starving’ (suffering)
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Loss of Thirst
Dry mouth is misinterpreted as thirst
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Loss of Speech
• Loss of two-way verbal exchange is a challenge
• At this point the family may realize that the
patient is really dying
• Difficulty with communication brings up many
questions
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Loss of Vision
• Patient may appear to stare off in space, as if
looking through people
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Loss of Hearing & Touch
• These senses appear to be the last to go
• Knowing this allows families to be involved far
into the dying process
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Terminal Syndrome
Characterized by Retained
Secretions
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Lack of cough
Multi-system shut-down
Not always associated with dyspnea
Vigorous hydration may flood lungs
Deep suctioning is generally ineffective
Role of IV and antibiotics is controversial
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Physician Checklist
• Treatment
– Switch essential medications to non-oral route
– Stop unnecessary medications, procedures, monitoring
• Evaluate for new symptoms
– Pain, dyspnea, urinary retention, agitation, respiratory secretions
• Family
– Contact, engage, educate, facilitate relationship with dying
patient, console
• Yourself
– Bear witness
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Learning Objectives
• Describe how and where people die in the
U.S.A.
• Identify patterns of dying and related issues of
prognosis
• Identify the characteristics of what a ‘good death’
might be for different populations and for
yourself
• Increase your understanding of events in the last
48 hours of life
• Incorporate this content into your clinical
teaching
http://www.growthhouse.org/stanford
Module #1