Embed Size (px)
Citation preview
EEPPEECC
EEPPEECC
Gaps in End-of-life Care
Gaps in End-of-life Care
Plenary 1Plenary 1Plenary 1Plenary 1
The Project to Educate Physicians on End-of-life CareSupported by the American Medical Association and the Robert Wood Johnson Foundation
The Project to Educate Physicians on End-of-life CareSupported by the American Medical Association and the Robert Wood Johnson Foundation
ObjectivesObjectives
Describe the current state of dying in Describe the current state of dying in AmericaAmerica
Contrast this with the way people Contrast this with the way people wish to diewish to die
Introduce the EPEC curriculumIntroduce the EPEC curriculum
Describe the current state of dying in Describe the current state of dying in AmericaAmerica
Contrast this with the way people Contrast this with the way people wish to diewish to die
Introduce the EPEC curriculumIntroduce the EPEC curriculum
How americans diedin the past . . .How americans diedin the past . . . Early 1900sEarly 1900s
average life expectancy 50 yearsaverage life expectancy 50 years
childhood mortality highchildhood mortality high
adults lived into their 60sadults lived into their 60s
Early 1900sEarly 1900s
average life expectancy 50 yearsaverage life expectancy 50 years
childhood mortality highchildhood mortality high
adults lived into their 60sadults lived into their 60s
. . . How americans diedin the past. . . How americans diedin the past Prior to antibiotics, people died Prior to antibiotics, people died
quicklyquickly
infectious diseaseinfectious disease
accidentsaccidents
Medicine focused on caring, comfortMedicine focused on caring, comfort
Sick cared for at homeSick cared for at home
with cultural variationswith cultural variations
Prior to antibiotics, people died Prior to antibiotics, people died quicklyquickly
infectious diseaseinfectious disease
accidentsaccidents
Medicine focused on caring, comfortMedicine focused on caring, comfort
Sick cared for at homeSick cared for at home
with cultural variationswith cultural variations
Medicine’s shiftin focus . . .Medicine’s shiftin focus . . . Science, technology, communicationScience, technology, communication
Marked shift in values, focus of North Marked shift in values, focus of North American societyAmerican society
““death denying”death denying”
value productivity, youth, independencevalue productivity, youth, independence
devalue age, family, interdependent devalue age, family, interdependent caringcaring
Science, technology, communicationScience, technology, communication
Marked shift in values, focus of North Marked shift in values, focus of North American societyAmerican society
““death denying”death denying”
value productivity, youth, independencevalue productivity, youth, independence
devalue age, family, interdependent devalue age, family, interdependent caringcaring
Medicine’s shiftin focus . . .Medicine’s shiftin focus . . . Potential of medical therapiesPotential of medical therapies
““fight aggressively” against illness, fight aggressively” against illness, deathdeath
prolong life at all costprolong life at all cost
Improved sanitation, public health, Improved sanitation, public health, antibiotics, other new therapiesantibiotics, other new therapies
increasing life expectancyincreasing life expectancy
1995 avg 76 y (F: 79 y; M: 73 y)1995 avg 76 y (F: 79 y; M: 73 y)
Potential of medical therapiesPotential of medical therapies
““fight aggressively” against illness, fight aggressively” against illness, deathdeath
prolong life at all costprolong life at all cost
Improved sanitation, public health, Improved sanitation, public health, antibiotics, other new therapiesantibiotics, other new therapies
increasing life expectancyincreasing life expectancy
1995 avg 76 y (F: 79 y; M: 73 y)1995 avg 76 y (F: 79 y; M: 73 y)
. . . Medicine’s shiftin focus. . . Medicine’s shiftin focus Death “the enemy”Death “the enemy”
organizational promisesorganizational promises
sense of failure if patient not savedsense of failure if patient not saved
Death “the enemy”Death “the enemy”
organizational promisesorganizational promises
sense of failure if patient not savedsense of failure if patient not saved
End of lifein America todayEnd of lifein America today Modern health careModern health care
only a few curesonly a few cures
live much longer with chronic illnesslive much longer with chronic illness
dying process also prolongeddying process also prolonged
Modern health careModern health care
only a few curesonly a few cures
live much longer with chronic illnesslive much longer with chronic illness
dying process also prolongeddying process also prolonged
Protracted life-threatening illnessProtracted life-threatening illness > 90%> 90%
predictable steady decline with a predictable steady decline with a relatively short “terminal” phaserelatively short “terminal” phase
cancercancer
slow decline punctuated by periodic slow decline punctuated by periodic crisescrises
CHF, emphysema, Alzheimer’s-CHF, emphysema, Alzheimer’s-type dementiatype dementia
> 90%> 90%
predictable steady decline with a predictable steady decline with a relatively short “terminal” phaserelatively short “terminal” phase
cancercancer
slow decline punctuated by periodic slow decline punctuated by periodic crisescrises
CHF, emphysema, Alzheimer’s-CHF, emphysema, Alzheimer’s-type dementiatype dementia
Sudden death, unexpected causeSudden death, unexpected cause < 10%, MI, accident, etc< 10%, MI, accident, etc < 10%, MI, accident, etc< 10%, MI, accident, etc
Death
Time
Hea
lth
Sta
tus
Steady decline, short terminal phaseSteady decline, short terminal phase
Slow decline, periodic crises, sudden deathSlow decline, periodic crises, sudden death
Symptoms, suffering . . .Symptoms, suffering . . .
Fears, fantasy, worryFears, fantasy, worry
driven by experiencesdriven by experiences
media dramatizationmedia dramatization
Fears, fantasy, worryFears, fantasy, worry
driven by experiencesdriven by experiences
media dramatizationmedia dramatization
Symptoms, suffering . . .Symptoms, suffering . . .
Multiple physical symptomsMultiple physical symptoms
inpatients with cancer averaged 13.5 inpatients with cancer averaged 13.5 symptoms, outpatients 9.7symptoms, outpatients 9.7
greater prevalence with AIDSgreater prevalence with AIDS
related torelated to
primary illnessprimary illness
adverse effects of medications, adverse effects of medications, therapytherapy
intercurrent illnessintercurrent illness
Multiple physical symptomsMultiple physical symptoms
inpatients with cancer averaged 13.5 inpatients with cancer averaged 13.5 symptoms, outpatients 9.7symptoms, outpatients 9.7
greater prevalence with AIDSgreater prevalence with AIDS
related torelated to
primary illnessprimary illness
adverse effects of medications, adverse effects of medications, therapytherapy
intercurrent illnessintercurrent illness
Symptoms, suffering . . .Symptoms, suffering . . .
Multiple physical symptomsMultiple physical symptoms
many previously little examinedmany previously little examined
pain, nausea / vomiting, constipation, pain, nausea / vomiting, constipation, breathlessnessbreathlessness
weight loss, weakness / fatigue, loss of weight loss, weakness / fatigue, loss of functionfunction
Multiple physical symptomsMultiple physical symptoms
many previously little examinedmany previously little examined
pain, nausea / vomiting, constipation, pain, nausea / vomiting, constipation, breathlessnessbreathlessness
weight loss, weakness / fatigue, loss of weight loss, weakness / fatigue, loss of functionfunction
. . . Symptoms, suffering. . . Symptoms, suffering
Psychological distressPsychological distress
anxiety, depression, worry, fear, anxiety, depression, worry, fear, sadness, hopelessness, etcsadness, hopelessness, etc
40% worry about “being a burden”40% worry about “being a burden”
Psychological distressPsychological distress
anxiety, depression, worry, fear, anxiety, depression, worry, fear, sadness, hopelessness, etcsadness, hopelessness, etc
40% worry about “being a burden”40% worry about “being a burden”
Social isolationSocial isolation
Americans live alone, in couplesAmericans live alone, in couples
working, frail or illworking, frail or ill
Other familyOther family
live far awaylive far away
have lives of their ownhave lives of their own
Friends have other obligations, Friends have other obligations, prioritiespriorities
Americans live alone, in couplesAmericans live alone, in couples
working, frail or illworking, frail or ill
Other familyOther family
live far awaylive far away
have lives of their ownhave lives of their own
Friends have other obligations, Friends have other obligations, prioritiespriorities
CaregivingCaregiving
90% of Americans believe it is a 90% of Americans believe it is a family responsibilityfamily responsibility
Frequently falls to a small number of Frequently falls to a small number of peoplepeople
often womenoften women
ill equipped to provide careill equipped to provide care
90% of Americans believe it is a 90% of Americans believe it is a family responsibilityfamily responsibility
Frequently falls to a small number of Frequently falls to a small number of peoplepeople
often womenoften women
ill equipped to provide careill equipped to provide care
Financial pressuresFinancial pressures
20% of family members quit work to 20% of family members quit work to provide careprovide care
Financial devastationFinancial devastation
31% lost family savings31% lost family savings
40% of families became impoverished40% of families became impoverished
20% of family members quit work to 20% of family members quit work to provide careprovide care
Financial devastationFinancial devastation
31% lost family savings31% lost family savings
40% of families became impoverished40% of families became impoverished
Coping strategiesCoping strategies
Vary from person to personVary from person to person
May become destructiveMay become destructive
suicidal ideationsuicidal ideation
premature death by PAS or euthanasiapremature death by PAS or euthanasia
Vary from person to personVary from person to person
May become destructiveMay become destructive
suicidal ideationsuicidal ideation
premature death by PAS or euthanasiapremature death by PAS or euthanasia
Place of death . . .Place of death . . .
90% of respondents to NHO Gallup 90% of respondents to NHO Gallup survey want to die at homesurvey want to die at home
Death in institutionsDeath in institutions
1949 – 50% of deaths1949 – 50% of deaths
1958 – 61%1958 – 61%
1980 to present – 74% 1980 to present – 74%
57% hospitals, 17% nursing 57% hospitals, 17% nursing homes, 20% home, 6% other homes, 20% home, 6% other (1992)(1992)
90% of respondents to NHO Gallup 90% of respondents to NHO Gallup survey want to die at homesurvey want to die at home
Death in institutionsDeath in institutions
1949 – 50% of deaths1949 – 50% of deaths
1958 – 61%1958 – 61%
1980 to present – 74% 1980 to present – 74%
57% hospitals, 17% nursing 57% hospitals, 17% nursing homes, 20% home, 6% other homes, 20% home, 6% other (1992)(1992)
. . . Place of death. . . Place of death
Majority of institutional deaths could Majority of institutional deaths could be cared for at homebe cared for at home
death is the expected outcomedeath is the expected outcome
Generalized lack of familiarity with Generalized lack of familiarity with dying process, deathdying process, death
Majority of institutional deaths could Majority of institutional deaths could be cared for at homebe cared for at home
death is the expected outcomedeath is the expected outcome
Generalized lack of familiarity with Generalized lack of familiarity with dying process, deathdying process, death
Role of hospice, palliative care . . .Role of hospice, palliative care . . . Hospice started in US in late 1970’sHospice started in US in late 1970’s
Percentage of total US deaths in Percentage of total US deaths in hospice hospice
11% in 199311% in 1993
17% in 199517% in 1995
Hospice started in US in late 1970’sHospice started in US in late 1970’s
Percentage of total US deaths in Percentage of total US deaths in hospice hospice
11% in 199311% in 1993
17% in 199517% in 1995
Role of hospice, palliative care . . .Role of hospice, palliative care . . . Median length of stay decliningMedian length of stay declining
36 days in 199536 days in 1995
16% died < 7 days of admission16% died < 7 days of admission
20 days in 199820 days in 1998
Median length of stay decliningMedian length of stay declining
36 days in 199536 days in 1995
16% died < 7 days of admission16% died < 7 days of admission
20 days in 199820 days in 1998
. . . Role of hospice, palliative care. . . Role of hospice, palliative care Palliative care programs / consult Palliative care programs / consult
services evolvingservices evolving
earlier symptom management / earlier symptom management / supportive care expertisesupportive care expertise
possible impact on life expectancypossible impact on life expectancy
Palliative care programs / consult Palliative care programs / consult services evolvingservices evolving
earlier symptom management / earlier symptom management / supportive care expertisesupportive care expertise
possible impact on life expectancypossible impact on life expectancy
GapsGaps
FearsFears Die on a machineDie on a machine
Die in discomfortDie in discomfort
Be a burdenBe a burden
Die in institutionDie in institution
FearsFears Die on a machineDie on a machine
Die in discomfortDie in discomfort
Be a burdenBe a burden
Die in institutionDie in institution
DesiresDesires Die not on a Die not on a
ventilator ventilator
Die in comfortDie in comfort
Die with family / Die with family / friendsfriends
Die at homeDie at home
DesiresDesires Die not on a Die not on a
ventilator ventilator
Die in comfortDie in comfort
Die with family / Die with family / friendsfriends
Die at homeDie at home
Large gap between reality, desireLarge gap between reality, desire Large gap between reality, desireLarge gap between reality, desire
Public expectations Public expectations
AMA Public Opinion Poll on Health AMA Public Opinion Poll on Health Care Issues, 1997Care Issues, 1997
““Do you feel your doctor is open and able to Do you feel your doctor is open and able to help you discuss and plan for care in case help you discuss and plan for care in case of life-threatening illness?”of life-threatening illness?”
Yes 74%Yes 74%
No 14% No 14%
Don’t know 12% Don’t know 12%
AMA Public Opinion Poll on Health AMA Public Opinion Poll on Health Care Issues, 1997Care Issues, 1997
““Do you feel your doctor is open and able to Do you feel your doctor is open and able to help you discuss and plan for care in case help you discuss and plan for care in case of life-threatening illness?”of life-threatening illness?”
Yes 74%Yes 74%
No 14% No 14%
Don’t know 12% Don’t know 12%
Physician training . . .Physician training . . .
No formal training, physicians feel ill No formal training, physicians feel ill equippedequipped
““They said there was ‘nothing to do’ for this young They said there was ‘nothing to do’ for this young
man who was ‘end stage.’ He was restless and man who was ‘end stage.’ He was restless and
short of breath; he couldn’t talk and looked short of breath; he couldn’t talk and looked
terrified. I didn’t know what to do, so I patted him terrified. I didn’t know what to do, so I patted him
on the shoulder, said something inane, and left. on the shoulder, said something inane, and left.
At 7 am he died. The memory haunts me. I failed At 7 am he died. The memory haunts me. I failed
to care for him properly because I was ignorant.”to care for him properly because I was ignorant.”
No formal training, physicians feel ill No formal training, physicians feel ill equippedequipped
““They said there was ‘nothing to do’ for this young They said there was ‘nothing to do’ for this young
man who was ‘end stage.’ He was restless and man who was ‘end stage.’ He was restless and
short of breath; he couldn’t talk and looked short of breath; he couldn’t talk and looked
terrified. I didn’t know what to do, so I patted him terrified. I didn’t know what to do, so I patted him
on the shoulder, said something inane, and left. on the shoulder, said something inane, and left.
At 7 am he died. The memory haunts me. I failed At 7 am he died. The memory haunts me. I failed
to care for him properly because I was ignorant.”to care for him properly because I was ignorant.”
. . . Physician training. . . Physician training
1997-1998: only 4 of 126 US medical 1997-1998: only 4 of 126 US medical schools require a separate courseschools require a separate course
Not comprehensive, standardizedNot comprehensive, standardized
How can physicians hope to be How can physicians hope to be competent, confident?competent, confident?
1997-1998: only 4 of 126 US medical 1997-1998: only 4 of 126 US medical schools require a separate courseschools require a separate course
Not comprehensive, standardizedNot comprehensive, standardized
How can physicians hope to be How can physicians hope to be competent, confident?competent, confident?
Barriers to end-of-life care . . .Barriers to end-of-life care . . . Lack of acknowledgment of Lack of acknowledgment of
importanceimportance
introduced late, funding inadequateintroduced late, funding inadequate
Fear of addiction, exaggerated risk of Fear of addiction, exaggerated risk of adverse effectsadverse effects
restrictive legislationrestrictive legislation
Lack of acknowledgment of Lack of acknowledgment of importanceimportance
introduced late, funding inadequateintroduced late, funding inadequate
Fear of addiction, exaggerated risk of Fear of addiction, exaggerated risk of adverse effectsadverse effects
restrictive legislationrestrictive legislation
Barriers to end-of-life care . . .Barriers to end-of-life care . . . Discomfort communicating “bad” Discomfort communicating “bad”
news, prognosisnews, prognosis
misunderstandingmisunderstanding
Lack of skill negotiating goals of Lack of skill negotiating goals of care, treatment prioritiescare, treatment priorities
futile therapyfutile therapy
Discomfort communicating “bad” Discomfort communicating “bad” news, prognosisnews, prognosis
misunderstandingmisunderstanding
Lack of skill negotiating goals of Lack of skill negotiating goals of care, treatment prioritiescare, treatment priorities
futile therapyfutile therapy
. . . Barriers to end-of-life care . . . Barriers to end-of-life care Personal fears, worries, lack of Personal fears, worries, lack of
confidence, competenceconfidence, competence
avoidance of patients, familiesavoidance of patients, families
Perhaps reflection on personal Perhaps reflection on personal expectations will bring insight into expectations will bring insight into patient, family expectations, needspatient, family expectations, needs
Personal fears, worries, lack of Personal fears, worries, lack of confidence, competenceconfidence, competence
avoidance of patients, familiesavoidance of patients, families
Perhaps reflection on personal Perhaps reflection on personal expectations will bring insight into expectations will bring insight into patient, family expectations, needspatient, family expectations, needs
Goals of EPECGoals of EPEC Practicing physiciansPracticing physicians Core clinical skillsCore clinical skills ImproveImprove
competence, confidencecompetence, confidence
patient-physician relationshipspatient-physician relationships
patient / family satisfactionpatient / family satisfaction
physician satisfactionphysician satisfaction
Not intended to make every physician a Not intended to make every physician a palliative care expertpalliative care expert
Practicing physiciansPracticing physicians Core clinical skillsCore clinical skills ImproveImprove
competence, confidencecompetence, confidence
patient-physician relationshipspatient-physician relationships
patient / family satisfactionpatient / family satisfaction
physician satisfactionphysician satisfaction
Not intended to make every physician a Not intended to make every physician a palliative care expertpalliative care expert
EPEC curriculum . . .EPEC curriculum . . .
Whole patient assessment (M3)Whole patient assessment (M3)
Communication of bad news (M2)Communication of bad news (M2)
Goals of care, treatment priorities (M7)Goals of care, treatment priorities (M7)
Advance care planning (M1)Advance care planning (M1)
Whole patient assessment (M3)Whole patient assessment (M3)
Communication of bad news (M2)Communication of bad news (M2)
Goals of care, treatment priorities (M7)Goals of care, treatment priorities (M7)
Advance care planning (M1)Advance care planning (M1)
EPEC curriculum . . .EPEC curriculum . . .
Symptom managementSymptom management
pain (M4)pain (M4)
depression, anxiety, delirium (M6)depression, anxiety, delirium (M6)
other common symptoms (M10)other common symptoms (M10)
Sudden critical illness (M8)Sudden critical illness (M8)
Medical futility (M9)Medical futility (M9)
Symptom managementSymptom management
pain (M4)pain (M4)
depression, anxiety, delirium (M6)depression, anxiety, delirium (M6)
other common symptoms (M10)other common symptoms (M10)
Sudden critical illness (M8)Sudden critical illness (M8)
Medical futility (M9)Medical futility (M9)
EPEC curriculum . . .EPEC curriculum . . .
Physician-assisted suicide / Physician-assisted suicide / euthanasia (M5)euthanasia (M5)
Withholding or withdrawingWithholding or withdrawinglife-sustaining therapy (M11)life-sustaining therapy (M11)
Care in the last hours of life, Care in the last hours of life, bereavement support (M12)bereavement support (M12)
Physician-assisted suicide / Physician-assisted suicide / euthanasia (M5)euthanasia (M5)
Withholding or withdrawingWithholding or withdrawinglife-sustaining therapy (M11)life-sustaining therapy (M11)
Care in the last hours of life, Care in the last hours of life, bereavement support (M12)bereavement support (M12)
EPEC curriculum . . .EPEC curriculum . . .
Legal issues (P2)Legal issues (P2)
Models of end-of-life care (P3)Models of end-of-life care (P3)
Goals for change, barriers to Goals for change, barriers to improving end-of-life care (P4)improving end-of-life care (P4)
Interdisciplinary teamwork Interdisciplinary teamwork (throughout)(throughout)
Legal issues (P2)Legal issues (P2)
Models of end-of-life care (P3)Models of end-of-life care (P3)
Goals for change, barriers to Goals for change, barriers to improving end-of-life care (P4)improving end-of-life care (P4)
Interdisciplinary teamwork Interdisciplinary teamwork (throughout)(throughout)
. . . EPEC curriculum. . . EPEC curriculum
Apply each skill in your practiceApply each skill in your practice
Rediscover professional fulfillmentsRediscover professional fulfillments
Foster creative approaches to create Foster creative approaches to create change in end-of-life carechange in end-of-life care
change will not be effective without change will not be effective without physiciansphysicians
Apply each skill in your practiceApply each skill in your practice
Rediscover professional fulfillmentsRediscover professional fulfillments
Foster creative approaches to create Foster creative approaches to create change in end-of-life carechange in end-of-life care
change will not be effective without change will not be effective without physiciansphysicians
EEPPEECC
EEPPEECC Gaps in Gaps in
End-of-life CareEnd-of-life Care
SummarySummary
Gaps in Gaps in End-of-life CareEnd-of-life Care
SummarySummary
