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Module #1http://www.growthhouse.org/stanford
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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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
1 2 3 4 5 1 2 3 4 5
Module Titles
Overview: Death and Dying in the U.S.A.
Pain ManagementCommunicating with Patients
and Families Making Difficult Decisions Non-Pain Symptom
ManagementVenues and Systems of CarePsychiatric Issues and
Spirituality
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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.– Who dies where, and when– Patterns of death and prognostication– The ‘good death’– Experiences with the dying– The last 48 hours
Module #1http://www.growthhouse.org/stanford
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
Module #1http://www.growthhouse.org/stanford
Top Five Causes of Death
1900Influenza, pneumonia 11.8%
Tuberculosis 11.3%
Gastritis, enteritis 8.3%
Heart Disease 8.0%
Stroke 6.2%
Brim et al., 1970
2000
Heart Disease 25.7%
Cancer 20.0%
Stroke 6.0%
COPD 4.5%
Accidents 3.4%
Minino & Smith, 2001
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Where We Die
6%
57%
17%
20%
ResidenceNursing HomeHospitalOther
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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30% of families are impoverished by the process of dying
Covinsky, 1994
Economic Impact on Families by a Death in the Family
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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
The Facts of Life About Dying
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Trajectory of Steady Decline
Functional Status
100%
Time
0 6 months
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Implications of different trajectories of dying
Brainstorm
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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
Different Dying Trajectories Affect…
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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
• Home• Comfort• Sense of completion (tasks accomplished)• Saying goodbye• Life-review• Love
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• Sudden death in sleep
• Dying at home
• Dying engaged in meaningful activity
Common Ideal Death Scenarios
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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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• How many dying patients have you cared for?
• Think of a particularly memorable case
What made it memorable to you?
Experiences with Dying
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Attributes of dying well and problematic dyingPositive Themes Negative Themes
Discussion of Cases
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• How do you know a person is dying?
• What are some of the signs of imminent death?
The Last 48 Hours
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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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• 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
Most Hospice Deaths Judged Peaceful
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Symptom PercentNoisy, moist breathing 56Urinary incontinence 32Urinary retention 21Pain 42Restlessness, agitation 42Dyspnea 22Nausea, vomiting 14Sweating 14Jerking, twitching 12Confusion 08
Lichter and Hunt, 1990
Symptoms & Signs in the Last 48 Hours
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Events of the Last 48 Hours
Orderly loss of the senses and desires
• 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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Dry mouth is misinterpreted as thirst
Loss of Thirst
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• 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
Loss of Speech
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• Patient may appear to stare off in space, as if looking through people
Loss of Vision
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• These senses appear to be the last to go
• Knowing this allows families to be involved far into the dying process
Loss of Hearing & Touch
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Terminal Syndrome Characterized by Retained Secretions
• 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
Module #1http://www.growthhouse.org/stanford
• 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
Learning Objectives