Palliative Care in 2007Palliative Care in 2007

Shawn C. Charest MDShawn C. Charest MD

March 14, 2007March 14, 2007

What is Palliative Care?What is Palliative Care?

Palliative care is NOT Palliative care is NOT just:just:

Withdrawing life support or “Comfort care”Withdrawing life support or “Comfort care”““Hospice Care”Hospice Care”

Palliative care also includesPalliative care also includes

Decision-making about the goals of careDecision-making about the goals of careCommunication with familiesCommunication with familiesPain and symptom controlPain and symptom controlCultural competencyCultural competency

Palliative Care:A Shift in Emphasis in Care

DIAGNOSIS

DEATH

Disease Management/Prolonging Life

Relieve Suffering

Where are We Going?Where are We Going?

The face of dying in America todayThe face of dying in America todayThe unique complexities of prognostication and The unique complexities of prognostication and

caregivingcaregivingThe palliative care paradigmThe palliative care paradigmCase StudiesCase Studies

Chronic Obstructive Lung DiseaseChronic Obstructive Lung Disease

End Stage Renal DiseaseEnd Stage Renal Disease

DementiaDementia

The Nature of Suffering and the Goals of The Nature of Suffering and the Goals of Medicine Medicine - Eric J. Cassell- Eric J. Cassell

The relief of suffering and the cure of disease must be seen The relief of suffering and the cure of disease must be seen as twin obligations of a medical profession that is truly as twin obligations of a medical profession that is truly dedicated to the care of the sick. Physicians’ failure to dedicated to the care of the sick. Physicians’ failure to understand the nature of suffering can result in medical understand the nature of suffering can result in medical intervention that (though technically adequate) not only intervention that (though technically adequate) not only fails to relieve suffering but becomes a source of suffering fails to relieve suffering but becomes a source of suffering itself.itself.

Can End of Life Care Be Improved?Can End of Life Care Be Improved?

The Study to Understand Prognoses and The Study to Understand Prognoses and Preferences for Outcomes and Risks of Preferences for Outcomes and Risks of

Treatments (SUPPORT)Treatments (SUPPORT)

SUPPORT: BackgroundSUPPORT: Background Controlled trial to improve care of seriously ill hospitalized Controlled trial to improve care of seriously ill hospitalized

patientspatients

Multicenter study funded by Robert Wood JohnsonMulticenter study funded by Robert Wood Johnson

9000 patients with life threatening illness9000 patients with life threatening illness

First phase: how people die in hospitalsFirst phase: how people die in hospitals

Second phase: RCT of nurse based intervention, 2500 Second phase: RCT of nurse based intervention, 2500 subjects in each groupsubjects in each group

53%

Physician Did Not Understand That a Patient Physician Did Not Understand That a Patient Wanted to Avoid CPRWanted to Avoid CPR

Prolonged Suffering: 10 or More Days Prolonged Suffering: 10 or More Days in ICU, in Coma, or on Ventilatorin ICU, in Coma, or on Ventilator

38%

Experienced Moderate or Severe Pain at Least Experienced Moderate or Severe Pain at Least Half of the Time Within Their Last Few DaysHalf of the Time Within Their Last Few Days

50%

Impact of Serious Illness on Patients’ FamiliesImpact of Serious Illness on Patients’ Families

Needed large amount of family caregiving 34%Needed large amount of family caregiving 34%Lost most family savings 31%Lost most family savings 31%Lost major source of income 29%Lost major source of income 29%Major life change for family member 20%Major life change for family member 20%Other family illness from stress 12% Other family illness from stress 12% At least one of the above 55%At least one of the above 55%

(SUPPORT JAMA (SUPPORT JAMA

1994;272:1839-1844)1994;272:1839-1844)

SUPPORT: Site of DeathSUPPORT: Site of Death

Site of death predicted by :Site of death predicted by :– number of hospital bedsnumber of hospital beds– hospice spendinghospice spending– Percent patients in nursing homePercent patients in nursing home– expenditures on long term careexpenditures on long term care– diagnostic categorydiagnostic category

Patient preferences irrelevantPatient preferences irrelevant

Who is dying in the U.S.?Who is dying in the U.S.?

Median age of death is 77 years.Median age of death is 77 years. Among survivors to age 65, median age at death is 84 for Among survivors to age 65, median age at death is 84 for

women, and 80 for men.women, and 80 for men. In the frail elderly death follows a long period of In the frail elderly death follows a long period of

progressive functional decline and loss of organ reserve progressive functional decline and loss of organ reserve accompanied by specific disease processes.accompanied by specific disease processes.

Site of DeathSite of Death

Hospitals: Hospitals: 56%56% Nursing homes: Nursing homes: 19% 19% Home:Home: 21% 21% OtherOther 4% 4%

( 1993 National Mortality Followback Survey)( 1993 National Mortality Followback Survey)

Leading Causes of Death: 1997Leading Causes of Death: 1997

Heart disease: Heart disease: 31% 31% Malignant neoplasm: Malignant neoplasm: 23%23% Cerebrovascular disease: Cerebrovascular disease: 7.0%7.0% COPD: COPD: 4.7% 4.7% Accidents: Accidents: 4.1%4.1% Pneumonia: Pneumonia: 3.7% 3.7%

Account for 75% of all deathsAccount for 75% of all deaths National Center for Health StatisticsNational Center for Health Statistics

Copyright ©2005 BMJ Publishing Group Ltd.

Murray, S. A et al. BMJ 2005;330:1007-1011

Fig 1 Typical illness trajectories for people with progressive chronic illness. Adapted from Lynn and Adamson, 2003.7 With permission from RAND Corporation, Santa Monica, California, USA.

Mrs. A: What is her prognosis?Mrs. A: What is her prognosis?

94 year old with congestive heart 94 year old with congestive heart failure, severe peripheral vascular failure, severe peripheral vascular disease, a systolic blood pressure disease, a systolic blood pressure of 100, and shortness of breath at of 100, and shortness of breath at rest or with mild exertion. She is rest or with mild exertion. She is treated judiciously with treated judiciously with medications. medications.

Is this patient terminally ill?Is this patient terminally ill?

Symptoms at the End of Life: Symptoms at the End of Life: Cancer vs. Other Causes of DeathCancer vs. Other Causes of Death

CancerCancer Other Other

PainPain 84%84% 67%67%

Trouble breathingTrouble breathing 47%47% 49%49%

Nausea and vomitingNausea and vomiting 51%51% 27%27%

SleeplessnessSleeplessness 51%51% 36%36%

ConfusionConfusion 33%33% 38%38%

DepressionDepression 38%38% 36%36%

Loss of appetiteLoss of appetite 71%71% 38%38%

ConstipationConstipation 47%47% 32%32%

Seale and Cartwright, 1994Seale and Cartwright, 1994

Potential Goals of Care:Potential Goals of Care:

Cure of diseaseCure of disease Avoidance of premature Avoidance of premature

deathdeath Maintenance or Maintenance or

improvement in functionimprovement in function Prolong lifeProlong life

Relief of sufferingRelief of suffering Quality of lifeQuality of life Staying in controlStaying in control A good deathA good death Support for families and Support for families and

loved onesloved ones

““For most patients, two fundamental facts ensure For most patients, two fundamental facts ensure that the transition to death will remain difficult: that the transition to death will remain difficult:

First is the widespread and deeply held desire not First is the widespread and deeply held desire not to be dead.to be dead.

Second is medicine’s inability to predict the Second is medicine’s inability to predict the future… to give patients a precise and reliable future… to give patients a precise and reliable prognosis….prognosis….

When death is the alternative, many patients who When death is the alternative, many patients who have only a small amount of hope will pay a have only a small amount of hope will pay a high price to continue the struggle.”high price to continue the struggle.”

Finucane TE. Finucane TE. JAMAJAMA 1999; 282:1670. 1999; 282:1670.

Facing up to death

Case StudiesCase Studies

Chronic Obstructive Lung DiseaseChronic Obstructive Lung Disease

End Stage Renal DiseaseEnd Stage Renal Disease

DementiaDementia

COPD is the 4th leading COPD is the 4th leading cause of death cause of death

Globally: 3rd major cause of Globally: 3rd major cause of death by 2020death by 2020

Slowly progressive and disablingSlowly progressive and disabling

Most patients not offered /do not Most patients not offered /do not articulate wishes for end of life articulate wishes for end of life carecare

Predictions for individuals often Predictions for individuals often inaccurateinaccurate

COPD Overview: what do we know from COPD Overview: what do we know from SUPPORT?SUPPORT?

• After an index admission, patients spent 15-22% of After an index admission, patients spent 15-22% of their remaining time in hospital.their remaining time in hospital.

• 6 months post-admission mortality 33% 6 months post-admission mortality 33%

• Patients did not recognize they were approaching the Patients did not recognize they were approaching the ends of their lives.ends of their lives.

““Lynn J Lynn J et alet al. JAGS 2000:48;S9. JAGS 2000:48;S9

COPD patient perspectivesCOPD patient perspectives

Life was considered “Hard Work”Life was considered “Hard Work”To get up in the morning, get dressedTo get up in the morning, get dressedand move from one room to another required all their and move from one room to another required all their strength strength

Loneliness – connectednessLoneliness – connectedness““Then the oxygen keeps hissing and everyone asks: Then the oxygen keeps hissing and everyone asks: what is that? So you avoid going anywhere with it.”what is that? So you avoid going anywhere with it.”Those living in their own homes seldom met anyone Those living in their own homes seldom met anyone but family, home care aides or nursesbut family, home care aides or nurses

Elofsson et al. Palliative Med 2004;18;611. Elofsson et al. Palliative Med 2004;18;611. Meaning of being old and living with COPDMeaning of being old and living with COPD

COPD Patients’ perceptions of end of life COPD Patients’ perceptions of end of life discussions:discussions:

Advance DirectivesAdvance Directives Intubation Intubation

Informative Informative 26.7% 26.7% 26.7%26.7%Informative and reassuring Informative and reassuring 50.5% 50.5% 53.5%53.5%Anxiety provoking but worthwhile Anxiety provoking but worthwhile 21.9% 21.9% 19.1%19.1%Too anxiety provoking to pursue Too anxiety provoking to pursue 0.9% 0.9% 0.9%0.9%

Actually had occurredActually had occurred 19%19% 15%15%

Heffner JE, et al. Heffner JE, et al. Attitudes regarding advance directives among Attitudes regarding advance directives among patients in pulmonary rehabilitation. AJRCCM 1996.patients in pulmonary rehabilitation. AJRCCM 1996.

Emerging profile of COPD patients at risk of Emerging profile of COPD patients at risk of dying within 1 yeardying within 1 year

• FEVFEV11 <30% predicted <30% predicted

• Declining performance statusDeclining performance status

• >1 urgent hospitalization in past year>1 urgent hospitalization in past year

• Left heart and/or other chronic co-morbid diseaseLeft heart and/or other chronic co-morbid disease

• Older ageOlder age

• Isolation: depression/ unmarriedIsolation: depression/ unmarried

Hansen-Flashen. Respir Care 2004; 49:90Hansen-Flashen. Respir Care 2004; 49:90

USRDS 1995 -- Life Expectancy Among USRDS 1995 -- Life Expectancy Among Selected Chronic DiseasesSelected Chronic Diseases

29.9

9.6

6.9

2.7

21.6

9.8

5.32.6

0

5

10

15

20

25

30

est remaining yrs

45-54 55-64

patient age

US residentscolon cancerESRDlung cancer

Sentinel Events in Renal PatientsSentinel Events in Renal Patients::

Myocardial infarctionMyocardial infarction: 38 – 44% survival at 1 year: 38 – 44% survival at 1 year

Amputation:Amputation: 27-49% 1 year survival 27-49% 1 year survival

Bacteremia:Bacteremia: Seven-fold risk of death in first six months Seven-fold risk of death in first six months

Symptom Burden in Dialysis PatientsSymptom Burden in Dialysis PatientsDavison, et al KI 2006;69:1621 Davison, et al KI 2006;69:1621 n = 507n = 507

0

10

20

30

40

50

60

70

80

%

reporting

tiredwell-beingappetitepainitchingdrowsyanxiousSOBnausea

Reasons for stopping dialysis, n = 131Reasons for stopping dialysis, n = 131 (Cohen et al, AJKD)(Cohen et al, AJKD)

65%

22%

2%9% 2%

chronic disease (deterioration)acute disordertechnical problems with dialysisfailure to thrivefailed trial

3232

Patients’ Desires for Treatments in Patients’ Desires for Treatments in Various Health States (%)Various Health States (%)

0102030405060708090

100

CurrentHealth

Sev CVA SevDementia

TermIllness

PermComa

Tube feeding

MV

CPR

Dialysis

Singer et al. J Am Soc Nephrol 1995;6:1410-1417

14

15

16

17

18

19

20

21

22

Deaths/100,000

1999 2000 2001 2002 2003

Year

Trends of US deaths from Alzheimer’s Trends of US deaths from Alzheimer’s diseasedisease

National Center for Health Statistics

MILD MODERATE SEVEREMILD MODERATE SEVERE ADVANCED ADVANCED

MEMORYMEMORYPERSONALITYPERSONALITYSPATIALSPATIALDISORIENTATIONDISORIENTATION

APHASIAAPHASIAAPRAXIAAPRAXIACONFUSIONCONFUSIONAGITATIONAGITATIONINSOMNIAINSOMNIA

RESISTIVENESSRESISTIVENESSINCONTINENCEINCONTINENCEMOTOR MOTOR IMPAIRMENTIMPAIRMENT

BEDFASTBEDFASTMUTEMUTENO MEMORYNO MEMORY

TIMETIME

IINNDDEEPPEENNDDEENNCCEE

EATING EATING PROBLEMSPROBLEMS

RECURRENT RECURRENT INFECTIONSINFECTIONS

??

??INSTITUTIONALIZATIONINSTITUTIONALIZATION

DRIVINGDRIVING

†

Eating Problems: Prevalence in the Eating Problems: Prevalence in the CASCADE CASCADE studystudy

0

10

20

30

40

50

60

70

80

90

0-3 3-6 6-9 9-12 12-15 15-18 < 3 mos. ofdeath

Time (months)

% S

ub

ject

s (N

=18

9) w

ith

eat

ing

pro

ble

ms

N=50/141N=46/115 N=32/82 N=22/53 N=13/32 N=9/24

N=57/68

Pneumonia PrevalencePneumonia Prevalence

0

10

20

30

40

50

60

0-3 3-6 6-9 9-12 12-15 15-18 < 3 mos. ofdeath

Time (months)

% s

ub

jec

ts (

N=

18

9)

wit

h p

ne

um

on

ia

N=22/141

N=13/115 N=12/82 N=8/53N=4/32

N=2/24

N=34/68

2001 Location of Death2001 Location of Death

0

10

20

30

40

50

60

70

80

Dementia Cancer Other conditions

% D

ea

ths

Hospital

Nursing Home

Home

Other

Mitchell SL et. al. JAGS 2005

Hospice in DementiaHospice in Dementia

10% hospice enrollees nationwide10% hospice enrollees nationwide– 1-4% community1-4% community– 7-16% nursing home7-16% nursing home

9 out of 10 persons dying with dementia will not receive 9 out of 10 persons dying with dementia will not receive hospice care hospice care

2004 National Hospice and Palliative Care OrganizationSachs GA, J Gen Intern Med 2004

Predicting Survival in End-Stage DementiaPredicting Survival in End-Stage Dementia

99 end-stage dementia patients hospitalized with acute 99 end-stage dementia patients hospitalized with acute illness illness

Median survival of 169 days following admissionMedian survival of 169 days following admission

No survival benefit from tube feedingNo survival benefit from tube feeding Of over 25 variables examined, only admitting diagnosis Of over 25 variables examined, only admitting diagnosis

of infection was associated with mortalityof infection was associated with mortality

Meier et al, Arch Int Med 2000

And the costs of failing to do so…And the costs of failing to do so…

Years of invasive, intrusive, terrifying, and painful Years of invasive, intrusive, terrifying, and painful medical interventions in a patient who cannot medical interventions in a patient who cannot understand them and experiences all medical care as an understand them and experiences all medical care as an assault.assault.

Patient remembered for a decade+ of dementia, not for Patient remembered for a decade+ of dementia, not for his/her normal life with personhood.his/her normal life with personhood.

Decade+ of serious physical, emotional, social, and Decade+ of serious physical, emotional, social, and financial burdens of care on family caregiversfinancial burdens of care on family caregivers

Pain in End Stage DementiaPain in End Stage Dementia

Patients cannot self-reportPatients cannot self-report Pain unrecognized and routinely under- or untreatedPain unrecognized and routinely under- or untreated Pain behaviors are often subtle, missed, or mistaken for Pain behaviors are often subtle, missed, or mistaken for

something elsesomething else– somnolence resulting from exhaustionsomnolence resulting from exhaustion– resistance to movementresistance to movement– Agitation, vocalization, moaning, screamingAgitation, vocalization, moaning, screaming– grimacing and tense, rigid body posturegrimacing and tense, rigid body posture

Analgesic Dosing Schedules For Analgesic Dosing Schedules For Cognitively Intact and Dementia Cognitively Intact and Dementia

PatientsPatients

0102030405060708090

100

% Of Analgesics Ordered as

"As Needed"

Dementia Cognitively Intact

Morrison & Siu, JPSM, 2000

The Delirium experience:The Delirium experience:

“ “ He began to feel a discomfort, a fatigue, and a feeling He began to feel a discomfort, a fatigue, and a feeling of internal burning…The blanket seemed to weigh a of internal burning…The blanket seemed to weigh a ton…After much tossing and turning, he finally got to ton…After much tossing and turning, he finally got to sleep, and began to dream the ugliest most tangled sleep, and began to dream the ugliest most tangled

dreams in the world… he twisted away to try and free dreams in the world… he twisted away to try and free himself from it… words burst forth in a terrible scream himself from it… words burst forth in a terrible scream

and he woke up”and he woke up”

The character of Don Rodrigo, In “I Promessi Sposi” (the betrothed), The character of Don Rodrigo, In “I Promessi Sposi” (the betrothed), Alessandro Manzoni 1840. In Caraceni 2003.Alessandro Manzoni 1840. In Caraceni 2003.

After an episode of delirium…After an episode of delirium…

““The most frightening thing The most frightening thing to me is if I lost my mind, to me is if I lost my mind, and said things that I was and said things that I was not aware of. This would not aware of. This would be worse than being in be worse than being in pain”pain”

Where Have We Been?Where Have We Been?

There are profound gaps in the delivery of care to the There are profound gaps in the delivery of care to the chronically ill.chronically ill.

The great majority of patients die in the hospital or skilled The great majority of patients die in the hospital or skilled nursing facility.nursing facility.

There is a heavy symptom burden in the non-cancer There is a heavy symptom burden in the non-cancer chronic illness population comparable to cancer patients.chronic illness population comparable to cancer patients.

Prognostication in the non-cancer chronic illness Prognostication in the non-cancer chronic illness population is fraught with complication.population is fraught with complication.

There are “sentinel events” which help us prognosticate.There are “sentinel events” which help us prognosticate. Palliative care and disease modifying treatments are not Palliative care and disease modifying treatments are not

mutually exclusive and may in fact co-exist.mutually exclusive and may in fact co-exist.

AcknowledgementsAcknowledgements

End of Life/Palliative Education Resource Center University End of Life/Palliative Education Resource Center University of Wisconsinof Wisconsin

Diane Meier MD Mt. Sinai School of MedicineDiane Meier MD Mt. Sinai School of Medicine Center for the Advancement of Palliative MedicineCenter for the Advancement of Palliative Medicine Graeme Rocker MD Dalhousie University Halifax Nova Graeme Rocker MD Dalhousie University Halifax Nova

ScotiaScotia Jean Holley MD University of VirginiaJean Holley MD University of Virginia Joan Teno MD Brown Medical SchoolJoan Teno MD Brown Medical School 1616thth International Congress on the Care of the Terminally Ill International Congress on the Care of the Terminally Ill Harvard Palliative Care Education and PracticeHarvard Palliative Care Education and Practice