Palliative Care for Non Cancer Palliative Care for Non Cancer PatientsPatients
88thth Malaysian Hospice CongressMalaysian Hospice CongressPenang 2008Penang 2008Dr Ghauri AggarwalDr Ghauri Aggarwal
Palliative Medicine PhysicianPalliative Medicine PhysicianConcord Hospital, SydneyConcord Hospital, Sydney
Historical ContextHistorical Context
!! Palliative care for cancer patients and their Palliative care for cancer patients and their familiesfamilies
!! Cancer: supportive care / symptom controlCancer: supportive care / symptom control!! Models of care, research and education reflect Models of care, research and education reflect
cancer carecancer care!! Now: Increasing aging population worldwideNow: Increasing aging population worldwide
Table 3 Percentage of population aged 60 years or more in selectTable 3 Percentage of population aged 60 years or more in selected countries, years 2000 and 2050ed countries, years 2000 and 2050aa,,bb
CountryCountry 20002000 20502050
ItalyItaly 2424 4141
GermanyGermany 2323 3535
JapanJapan 2323 3838
SpainSpain 2222 4343
CzechCzech 1818 4141
USAUSA 1616 2828
ChinaChina 1010 3030
ThailandThailand 99 3030
BrazilBrazil 88 2323
IndiaIndia 88 2121
IndonesiaIndonesia 77 2222
MexicoMexico 77 2424
aa United Nations Population Database: United Nations Population Database: The Sex and Age Distribution of the World PopulationsThe Sex and Age Distribution of the World Populations. . NewNew York: UN York: UN Publications, updated 1998.Publications, updated 1998.
bb WHO: WHO: Health and AgeingHealth and Ageing. A discussion paper. WHO/NMH/HPS/0.1/2001.. A discussion paper. WHO/NMH/HPS/0.1/2001.
Historical ContextHistorical Context
!! Palliative care for cancer patients and familiesPalliative care for cancer patients and families!! Models of care, research and education reflect cancer Models of care, research and education reflect cancer
carecare!! Increasing aging population worldwideIncreasing aging population worldwide!! Care of patients with advance disease is costlyCare of patients with advance disease is costly
!! Large proportion of the health dollarLarge proportion of the health dollar!! Significant costs in the last year of life (US studies)Significant costs in the last year of life (US studies)
!! WHO recommendations: earlier intervention of PCWHO recommendations: earlier intervention of PC!! Symptom control for chronic diseasesSymptom control for chronic diseases
Palliative Care PrinciplesPalliative Care Principles
!! End of Life CareEnd of Life Care!! Advanced care directives and ethicsAdvanced care directives and ethics
!! Terminal CareTerminal Care!! Symptom controlSymptom control!! Psychosocial supportPsychosocial support!! Bereavement supportBereavement support!! Multidisciplinary team careMultidisciplinary team care!! Non cancer context: HIV/AIDSNon cancer context: HIV/AIDS
Are there differences?Are there differences?
!! Trajectory of illnessTrajectory of illness
Case RK Case RK Knutsen 5/08Knutsen 5/08
!! 69 yo man recently in nursing home for respite69 yo man recently in nursing home for respite!! Past Medical HistoryPast Medical History
!! IHDIHD!! Cardiomyopathy LVEF 15%Cardiomyopathy LVEF 15%!! HTHT!! Fe deficiency anaemiaFe deficiency anaemia
!! Supportive frail wife who couldnSupportive frail wife who couldn’’t care for himt care for him!! Repeated admissions into hospital with Repeated admissions into hospital with
worsening cardiac failureworsening cardiac failure
Case RK Case RK Knutsen 5/08Knutsen 5/08
!! AdmissionsAdmissions!! Iv infusion Dobutamine, dopamine and frusemideIv infusion Dobutamine, dopamine and frusemide
!! Discussions (family / cardiologist / palliative care)Discussions (family / cardiologist / palliative care)!! Poor prognosisPoor prognosis!! Limitations of medical interventionsLimitations of medical interventions!! Discharge to N/HDischarge to N/H!! Advance care planning: conservative management and not Advance care planning: conservative management and not
for refor re--admission, terminal care in the nursing home or home admission, terminal care in the nursing home or home (planned discharge home)(planned discharge home)
Case RK Case RK Knutsen 5/08Knutsen 5/08
!! ReRe--admission to hospitaladmission to hospital!! Felt better within 24hours of inotrope and symptomatic Felt better within 24hours of inotrope and symptomatic
management: management: ‘‘I always doI always do’’!! Very calm and feeling in controlVery calm and feeling in control!! ‘‘Wanting to live as long as he can with his wife of 35 Wanting to live as long as he can with his wife of 35
yearsyears’’!! Sister called in from the countryside numerous times: Sister called in from the countryside numerous times:
‘‘he is dyinghe is dying’……’……..’’he always pulls throughhe always pulls through’’!! Remained at peace, symptoms optimally controlled and Remained at peace, symptoms optimally controlled and
died in hospital feeling everything possible was donedied in hospital feeling everything possible was done
Illustrative Prototypical Death TrajectoriesIllustrative Prototypical Death TrajectoriesScenario A : Sud den D eat h f rom U nexpect ed
Cause
Time
Scenario B: Steady Decline from a Progressive Disease with a "Terminal"
Phase
Time
Hea
lth S
tatu
s
Scenario C: Advanced Illness w ith Slow Decline, Periodic Crises and
"Sudden Death"
Time
Hea
lth S
tatu
s
Scenario D: Slow Decline of Frail Patient w ith Multi-System Disease
Time
Hea
lth S
tatu
s
Are there differences?Are there differences?
!! Trajectory of illnessTrajectory of illness!! Different disease Different disease
processesprocesses!! Are symptoms different?Are symptoms different?!! Is terminal phase the Is terminal phase the
same?same?!! Diagnosing dyingDiagnosing dying
Cancer Vs Non Cancer Cancer Vs Non Cancer Concord Palliative Care Patients Concord Palliative Care Patients
(Jan 1997 (Jan 1997 -- Dec 2007) Dec 2007)
Cancer77%
Non-Cancer23%
Number of patients = 4700
Age Profile of Concord Palliative Care PatientsAge Profile of Concord Palliative Care Patients(Jan 1997 (Jan 1997 -- Dec 2007)Dec 2007)
0 0 14 27 522
250
504
970
1220
107191
35
297
488
108317 32
399
0
200
400
600
800
1000
1200
1400
Bel
ow 1
5
15-2
4
25-3
4
35-4
4
45-5
4
55-6
4
65-7
4
75-8
4
85-9
4
95-1
04
Age Groups
Num
ber o
f pat
ient
s Non CancerCancer
Total patients = 4700
Source of Referrals of Concord Palliative Care Source of Referrals of Concord Palliative Care Patients (Jan 1997 Patients (Jan 1997 -- Dec 2007) Dec 2007)
Non Cancer
Renal7%
Oncol6%
Respiratory8%
Colorect1%Others
13%
Geriatrics25%
Surgical Units14%
Gastro6%
Haemat5% Cardio
9%
Neuro10%
Number of patients = 4700
Cancer
Others9%
Surgical Units11%
Respiratory
8%
Geriatric7%
Gastro7%
Oncology41%
Neuro3%
Colorect5%
Cardiol1%Haemat
9%
Reason for Referral of Concord Palliative Care Reason for Referral of Concord Palliative Care Patients (Jan 1997 Patients (Jan 1997 -- Dec 2007) Dec 2007)
Non Cancer
Social problems
1%
Pain Control
13%Total
Management9%
Other Symptom Control
10%
Other42%
Terminal Phase15%
Link to PCS10%
Number of patients = 4700
Cancer
Social problems
1%
Pain Control
20%Total
Management14%
Other Symptom Control
10%
Other31%
Terminal Phase
4%
Link to PCS20%
0.00
0.05
0.10
0.15
0.20
0.25
0.30
Pain
Dypsnoea
Constipation
Nausea/vomit
Anorexia
Weakness
Lethargy
Lack mobility
Othergeneral
Weight Loss
Non CancerCancer
Number of recorded symptoms = 8122
Normalised data shown in chart
Top 10 Symptoms of Concord Palliative Care Top 10 Symptoms of Concord Palliative Care Patients (Jan 1997 Patients (Jan 1997 -- Dec 2007) Dec 2007)
Survival Time of Concord Palliative Care Patients Survival Time of Concord Palliative Care Patients (Jan 1997 (Jan 1997 -- Dec 2007) Dec 2007)
23 8 0
1745
1494
629
338
05258
622683
246
466526
685
172 133 117 10585 80 71 143
13141157
1039927
822 739 679
21702279 22402271
2108
0
500
1000
1500
2000
2500
Admission< 1 day
At 1st day10th day
20th day30th day
40th day50th day
60th day70th day
80th day90th day
100th day
200th day1st year
2nd year
Num
ber o
f pat
ient
s Non Cancer Cancer
Total number of deceased patients = 2986
Survival Time of Concord Palliative Care Patients Survival Time of Concord Palliative Care Patients (Jan 1997 (Jan 1997 -- Dec 2007) NormalisedDec 2007) Normalised
0.03 0.010.00
0.77
0.66
0.28
0.15
0.00
0.100.120.120.150.170.19
0.25
1.00
0.77
0.68
0.36
1.00
0.91
0.080.08
0.92
1.00
0.981.000.95
0.300.320.360.41
0.460.510.58
0.060.00
0.20
0.40
0.60
0.80
1.00
1.20
Admission< 1 day
At 1st day10th day
20th day30th day
40th day50th day
60th day70th day
80th day90th day
100th day
200th day1st year
2nd year
Num
ber o
f pat
ient
s Non Cancer Cancer
Total number of deceased patients = 2986
Care in older patientsCare in older patients
Martin M. Evers, New YorkMartin M. Evers, New York!! 1184 palliative care consultations1184 palliative care consultations!! More women 80yrs and aboveMore women 80yrs and above!! Cancer less prevalent, but still highest diseaseCancer less prevalent, but still highest disease
!! 38% vs. 60%38% vs. 60%!! Dementia, stroke, heart disease Dementia, stroke, heart disease –– 40%40%!! 17% dementia reason for referral17% dementia reason for referral
!! (5% 65(5% 65--79, 1% <65)79, 1% <65)!! 32% also a diagnosis of dementia32% also a diagnosis of dementia
!! (11%, 4%)(11%, 4%)!! Decision making capacity: 28% vs. 51% vs. 60%Decision making capacity: 28% vs. 51% vs. 60%!! Shorter ALOS, shorter time to referral to PC and Shorter ALOS, shorter time to referral to PC and
higher d/c to NHhigher d/c to NH
Martin M. Evers, New YorkMartin M. Evers, New York
!! >80 year old>80 year old!! More likely to have a DNR orderMore likely to have a DNR order!! More recommendation to withhold or withdraw More recommendation to withhold or withdraw
lifelife--sustaining treatments by PCsustaining treatments by PC!! Artificial nutrition, hydrationArtificial nutrition, hydration!! Intravenous interventionsIntravenous interventions!! AntibioticsAntibiotics
!! Less communication with patient and more with Less communication with patient and more with family / carersfamily / carers
Martin M. Evers, New YorkMartin M. Evers, New York!! Fewer interventions for pain, nausea, anxiety and other Fewer interventions for pain, nausea, anxiety and other
symptoms, but more for dyspnoeasymptoms, but more for dyspnoea!! No difference in the 3 groups to frequency with which No difference in the 3 groups to frequency with which
recommendations from palliative care were recommendations from palliative care were implementedimplemented!! CommunicationCommunication!! Symptom MxSymptom Mx!! Withhold or withdrawWithhold or withdraw
!! No difference in rate of advance care directivesNo difference in rate of advance care directives!! 6060--70% no directives70% no directives!! 7% forego Rx other than CPR7% forego Rx other than CPR
Palliative Care: the needs and rights Palliative Care: the needs and rights of older people and their familiesof older people and their families
0102030405060708090
CA COPD CCF ESLD MOSF 80+
dyspnoeaconfusionpain
??
Lynn et al, Ann Int Med, 1997;126:97
The level of need for palliative care: a The level of need for palliative care: a systematic review of the literature, PJ Franks systematic review of the literature, PJ Franks
et al, Palliative Medicine 2000et al, Palliative Medicine 2000
The level of need for palliative care: a The level of need for palliative care: a systematic review of the literature. systematic review of the literature. Pall Pall
Med 2000Med 2000!! Sample of 471 nonSample of 471 non--cancer deathscancer deaths!! Lower percentage than in cancer: Pain prev 67% Lower percentage than in cancer: Pain prev 67% !! respiratory problems 49%: highrespiratory problems 49%: high!! nausea/vomiting 27%nausea/vomiting 27%!! 6,900 p/M progressing non6,900 p/M progressing non--malignant diseasemalignant disease!! 3,400 p/M exp pain3,400 p/M exp pain!! 3,400 p/M resp problems3,400 p/M resp problems!! 1,900 p/M vomiting or nausea 1,900 p/M vomiting or nausea (Higginson (Higginson ’’95)95)
Care, Suffering and Ethics
SufferingSuffering
!! Increased awareness, diagnosis and treatment of Increased awareness, diagnosis and treatment of depressiondepression!! Up to 25% hospice patients are depressedUp to 25% hospice patients are depressed
!! Existential distressExistential distress!! Syndrome of demoralisation Syndrome of demoralisation
!! Contributions by: Cassell, Cecily Saunders (Contributions by: Cassell, Cecily Saunders (‘‘total total painpain’’) and Kissane DW ) and Kissane DW
Palliative Care and SufferingPalliative Care and Suffering
!! Provide the right and safe environment to Provide the right and safe environment to proceed through proceed through ‘‘the journeythe journey’’ for patientfor patient
!! ‘‘holdingholding--frameframe’’!! Multidisciplinary teamMultidisciplinary team!! The whole family includedThe whole family included!! Bereavement careBereavement care
!! Risk assessmentRisk assessment
Are there differences?Are there differences?
!! Trajectory of illnessTrajectory of illness!! Different disease processesDifferent disease processes
!! Are symptoms different?Are symptoms different?!! Is terminal phase the same?Is terminal phase the same?
!! Education versus actual careEducation versus actual care!! Different palliative care programsDifferent palliative care programs
Admission to palliative careAdmission to palliative care
!! Admission to hospice and palliative care Admission to hospice and palliative care programmes happen more by chance than by programmes happen more by chance than by needs needs (Addington(Addington--Hall et al.)Hall et al.)
!! Growing evidence that suffering from non Growing evidence that suffering from non cancer terminal illness may require at least as cancer terminal illness may require at least as much palliative care as patients dying from much palliative care as patients dying from cancercancer
Global TrendsGlobal Trends
Global settingGlobal setting
!! The importance of Palliative CareThe importance of Palliative Care!! Relatively cheap compared to therapeutic and Relatively cheap compared to therapeutic and
treatment programstreatment programs!! Simple modelSimple model!! Availability of drugs: morphine!Availability of drugs: morphine!!! Service deliveryService delivery!! Cultural and country specific: whoCultural and country specific: who’’s model?s model?
Are there differences?Are there differences?
!! Trajectory of illnessTrajectory of illness!! Different disease processesDifferent disease processes
!! Are symptoms different?Are symptoms different?!! Is terminal phase the same?Is terminal phase the same?
!! Education versus actual careEducation versus actual care!! Different palliative care programsDifferent palliative care programs!! Super specialisation!Super specialisation!
!! Generalist vs. specialist palliative careGeneralist vs. specialist palliative care
Management Concepts
Challenges in Challenges in Care DeliveryCare Delivery
!! Definition of Palliative CareDefinition of Palliative Care!! Defining specialist palliative careDefining specialist palliative care!! Timely access and when to initiate palliative careTimely access and when to initiate palliative care!! Palliative care in the non cancer settingPalliative care in the non cancer setting!! Advanced care planningAdvanced care planning!! Death preparationDeath preparation
Terminology!Terminology!
Informal carers
generalists
specialists
WhoWho’’s responsibility?s responsibility?
Table 1 Size of problem. Estimated number of people who would neTable 1 Size of problem. Estimated number of people who would need palliative care (in ed palliative care (in millions)millions)
Annual deaths globallyAnnual deaths globally 5656
Annual deaths in developing countriesAnnual deaths in developing countries 4444
Annual deaths in developed countriesAnnual deaths in developed countries 1212
Estimated numbers needing Estimated numbers needing palliativepalliative carecare 3333
aa It can be estimated that approximately 60% of the dying need It can be estimated that approximately 60% of the dying need palliativepalliative carecare..
Oxford Textbook of Palliative Med 3rd Ed.
Types of illness that may require Types of illness that may require palliative carepalliative care
!! CardiovascularCardiovascular!! End stage cardiac disease, ischaemic and cardiac failureEnd stage cardiac disease, ischaemic and cardiac failure
!! RespiratoryRespiratory!! End stage respiratory diseases, chronic airways diseaseEnd stage respiratory diseases, chronic airways disease
!! Nervous DiseaseNervous Disease!! MND, MS, StrokeMND, MS, Stroke
!! HIV / AIDSHIV / AIDS!! GeriatricGeriatric
!! DementiaDementia!! RenalRenal
!! Dialysis Dialysis
Types of IssuesTypes of Issues
!! Terminal careTerminal care!! End of life care planningEnd of life care planning!! FeedingFeeding!! Ethical decision makingEthical decision making
!! Withholding and Withdrawal of treatmentWithholding and Withdrawal of treatment
!! Symptom controlSymptom control!! Disease specificDisease specific!! General principlesGeneral principles
!! Psychosocial carePsychosocial care!! Bereavement supportBereavement support
Context of Palliative CareContext of Palliative Care!! Hospital Consultative serviceHospital Consultative service
!! Exposure to these patientsExposure to these patients!! Opportunities for educationOpportunities for education!! Collaboration: academic and researchCollaboration: academic and research
!! Community serviceCommunity service!! Resource adequate?Resource adequate?!! Manpower and budgetsManpower and budgets!! ChronicityChronicity
!! HospiceHospice!! Bed numbersBed numbers!! FundingFunding!! Long staysLong stays
death
Symptom management “palliative”
Treatment
Disease-modifying “curative”
Time
Better concept: Most patients need both disease-modifying treatments and help to live well with disease
Bereavement
Advanced care planning
Family support (incl bereavement)
Local PracticesLocal Practices
Place of Death of Concord Palliative Care Patients Place of Death of Concord Palliative Care Patients (Jan 1997 (Jan 1997 -- Dec 2007) Dec 2007)
Non CancerOther
Hospital2%
Home5%PC
Centre6%
Unknown2%
Other PCC1%
Nursing Home
6%
EH PCS ward1%
Concord ward77%
Total number of deceased patients = 2986
Cancer
Other Hospital
6%
Home12%
PC Centre16%
Unknown5%
Other PCC2%
Nursing Home
7%EH PCS
ward1%
Concord ward50%
Place of death of patients in SGH Place of death of patients in SGH collaborative heart failure programcollaborative heart failure program
Geriatrics: Concord HospitalGeriatrics: Concord Hospital!! Large geriatric populationLarge geriatric population!! Advanced care directivesAdvanced care directives!! Dementia: support / feeding / end of life care / family Dementia: support / feeding / end of life care / family
conferencesconferences!! 2008: implementing a 2008: implementing a ‘‘Special Care PlanSpecial Care Plan’’
!! Discussions about issues that might cause a life threatening Discussions about issues that might cause a life threatening decline in medical conditiondecline in medical condition
!! Documentation of: Active treatment measures or not for Documentation of: Active treatment measures or not for resuscitation for all patients resuscitation for all patients
!! Integrated End of Live Care Pathway: Liverpool Integrated End of Live Care Pathway: Liverpool (Ellershaw) integrated pathway for the dying patient(Ellershaw) integrated pathway for the dying patient
ICU: Concord HospitalICU: Concord Hospital
!! Looking at the interphase between Looking at the interphase between communication, symptom control, satisfaction communication, symptom control, satisfaction of patients and staffof patients and staff
!! Randomised study of palliative care inputRandomised study of palliative care input
PrognosticationPrognostication
!! Significant advancement in tools for Significant advancement in tools for prognosticationprognostication
!! Immune / cytokine studiesImmune / cytokine studies!! Can we diagnose Can we diagnose ‘‘dyingdying’’!! Can we predict a patientsCan we predict a patients’’ illness and death illness and death
trajectorytrajectory!! Prediction and communicationPrediction and communication
ConclusionConclusion!! We have a responsibility to utilise the principles of We have a responsibility to utilise the principles of
palliative care for patients with advanced diseasespalliative care for patients with advanced diseases!! Not all patients need to be referred to specialist Not all patients need to be referred to specialist
palliative care services palliative care services !! Generalist versus specialist palliative careGeneralist versus specialist palliative care!! Empower other specialist to manage with a small Empower other specialist to manage with a small
proportion of patients requiring palliative care proportion of patients requiring palliative care consultationsconsultations!! EducationEducation!! ResearchResearch!! ‘‘Care planCare plan’’ developmentdevelopment
Conclusion contConclusion cont’’dd
!! Advanced care planningAdvanced care planning!! ReadmissionsReadmissions!! InterventionsInterventions!! Treatment options / life Treatment options / life
prolonging measuresprolonging measures
!! End of life care decisionsEnd of life care decisions!! Place of carePlace of care!! Place of deathPlace of death!! NFRNFR!! Family supportFamily support
Education Education !! General symptom control principlesGeneral symptom control principles!! Medical students to specialists levelsMedical students to specialists levels!! Dialogue with our colleaguesDialogue with our colleagues!! Support and debriefingSupport and debriefing!! Changing the culture of the hospital environmentChanging the culture of the hospital environment!! Common pathwaysCommon pathways!! TwoTwo--way educationway education!! EthicsEthics!! Early advanced care planningEarly advanced care planning!! PrognosticationPrognostication