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