Advancing Palliative Care Advancing Palliative Care in the Public Sectorin the Public Sector

Dr. Richard Lim Boon Dr. Richard Lim Boon LeongLeong,,MBBS(MalMBBS(Mal) MRCP(UK)) MRCP(UK)

Consultant Palliative Medicine Physician,Consultant Palliative Medicine Physician,National Advisor on Palliative Medicine,National Advisor on Palliative Medicine,

Ministry of Health MalaysiaMinistry of Health Malaysia

Palliative Care in the Ministry of Health :

When did we start?

WHO DefinitionWHO Definition

““Palliative care is an approach that improves Palliative care is an approach that improves the quality of life of patients and their the quality of life of patients and their

families facing the problem associated families facing the problem associated with lifewith life--threatening illness, through the threatening illness, through the

prevention and relief of suffering by means prevention and relief of suffering by means of of early identification and impeccable early identification and impeccable assessment and treatmentassessment and treatment of pain and of pain and other problems, physical, psychosocial other problems, physical, psychosocial

and spiritual.and spiritual.””

HKL in 1950s – 1970s

History of Palliative care in MOHHistory of Palliative care in MOH

Oncology and RT Dept. Sarawak GH 1995

History of Palliative Care in MOHHistory of Palliative Care in MOH

Queen Elizabeth Hospital, Kota Kinabalu 1995

1998 MOH Directive1998 MOH Directive19981998 –– MOH directive for all state hospitals to set up MOH directive for all state hospitals to set up Palliative care Units (Palliative care Units (PCUsPCUs) or Palliative Care Teams ) or Palliative Care Teams ((PCTsPCTs) by the year 2000) by the year 2000

A palliative care kit was developed to guide hospitals as A palliative care kit was developed to guide hospitals as to how to develop palliative care units.to how to develop palliative care units.

Workshop on improving availability of pain relief drugs Workshop on improving availability of pain relief drugs sponsored by WHO and MOH held in 1999. sponsored by WHO and MOH held in 1999.

12 Clinical attachment training 12 Clinical attachment training programmesprogrammes were held in were held in Kota Kota KinabaluKinabalu from 1999 till 2002. from 1999 till 2002.

BukitMertajam

Ipoh

Alor Setar

Seremban

PulauPinang

Melaka

Klang

Johor Bharu

Kuantan

Kuala Terengganu

Kota Bharu

Taiping

Manjung

Baling

Kota Tinggi

Batu Pahat

Segamat

Kuala Krai

Tanah Merah

Jerantut

QEH Sandakan

Tawau

Miri

Sarawak General Hospital

Network of PC Teams in 16 district hospitals

Network to supply opioidanalgesia to interior regions

State PCU PCT BEDS

Perlis - 1 4Kedah 1 5 19Penang 1 1 12Perak 1 5 23Selangor - 2 2

N Sembilan 1 2 18Melaka 1 6Johor 1 8 35Pahang 1 8Terengganu 1 4 14Kelantan - 3 4Sabah 2 17 47Sarawak 1 2 8

Total 11 50 200

Distribution of PCUs and PCTs in Malaysia in 2002

ISSUESISSUES

No clearly defined vision or mission statement No clearly defined vision or mission statement on palliative care by MOHon palliative care by MOH

Lack of career structure and job opportunitiesLack of career structure and job opportunities

No set standards of care No set standards of care –– no authority on no authority on palliative care palliative care

Lack of clinical leadership and stakeholders to Lack of clinical leadership and stakeholders to champion palliative care in the MOH.champion palliative care in the MOH.

Dec 2002Dec 2002 –– PCU PCU selayangselayang developed as first developed as first MOH unit with MOH unit with specialisedspecialised palliative care.palliative care.

History of Palliative Care in MOHHistory of Palliative Care in MOH

History of Palliative Care in MOHHistory of Palliative Care in MOH

Dec 2004 Dec 2004 –– Proposal to develop palliative Proposal to develop palliative medicine as a medical submedicine as a medical sub--specialty.specialty.

20052005 –– Palliative Medicine was Palliative Medicine was recognisedrecognisedas a medical subas a medical sub--specialty in MOHspecialty in MOH

NATIONAL CANCER NATIONAL CANCER MANAGEMENT IN MANAGEMENT IN

MALAYSIAMALAYSIA20 20 -- YEAR MASTER PLANYEAR MASTER PLAN

GOAL 6: PALLIATIVE CAREGOAL 6: PALLIATIVE CARE

TARGETSTARGETS

20062006--2010 (RMK9)2010 (RMK9)Specialized palliative care services in 6 regional Specialized palliative care services in 6 regional hospitals with palliative medicine and pain specialistshospitals with palliative medicine and pain specialists

All medical schools to include palliative care education at All medical schools to include palliative care education at the undergraduate and postgraduate levelsthe undergraduate and postgraduate levels

To integrate palliative care in nurse training programs. To integrate palliative care in nurse training programs.

Develop cancer pain management Clinical Practice Develop cancer pain management Clinical Practice Guideline (CPG)Guideline (CPG)

To network with other palliative care service providers To network with other palliative care service providers within each regionwithin each region

The Big The Big ChallengeChallenge

Improving Effectiveness,Efficiency and

Equity of Palliative Care

Services In Malaysia

How Can We How Can We Achieve This? Achieve This?

Step 1:Step 1:

Defining a VisionDefining a Vision

Defining a VisionDefining a Vision

The MOH has made a firm commitment to The MOH has made a firm commitment to the development of palliative medicine as the development of palliative medicine as a service for the country.a service for the country.

VisionVisionTo achieve universal pain and symptom relief in all To achieve universal pain and symptom relief in all cancer patients.cancer patients.

To achieve pain and symptom relief in nonTo achieve pain and symptom relief in non--cancerous cancerous life threatening conditions.life threatening conditions.

To create a unified effort by To create a unified effort by all healthcare providersall healthcare providers to to ensure holistic and comprehensive palliative care ensure holistic and comprehensive palliative care throughout the country providing a support system for throughout the country providing a support system for patients patients wherever they may bewherever they may be. .

To promote universal understanding on endTo promote universal understanding on end--ofof--life life issues maintaining the ethical principles of medicine issues maintaining the ethical principles of medicine while while upholding human dignityupholding human dignity..

Step 2:Step 2:

Developing Developing SpecialisedSpecialised CareCare

Step 2 Step 2 –– Developing Developing SpecialisedSpecialisedCareCare

Training of specialists in the field of Training of specialists in the field of Palliative Medicine.Palliative Medicine.

Develop a postDevelop a post--basic palliative care nursing basic palliative care nursing course for course for specialisedspecialised nursing needs. nursing needs.

Why Why specialisedspecialised care?care?Palliative Care is a fulltime medical field that Palliative Care is a fulltime medical field that requires commitment, dedication and requires commitment, dedication and professionalism.professionalism.

A career structure is required in order to allow A career structure is required in order to allow doctors and nurses who were interested to focus doctors and nurses who were interested to focus on palliative care as a full time job.on palliative care as a full time job.

Clinical leadership and stakeholders must be Clinical leadership and stakeholders must be created in order to develop effectively. created in order to develop effectively.

Clinical ExcellenceClinical ExcellencePalliative medicine is a growing field of medicine Palliative medicine is a growing field of medicine worldwide with a growing body of evidence worldwide with a growing body of evidence supporting the skills and knowledge of palliative supporting the skills and knowledge of palliative care. care.

As a specialty it allows these skills and As a specialty it allows these skills and knowledge to be knowledge to be recognisedrecognised and acknowledged and acknowledged by colleagues and peers.by colleagues and peers.

With such recognition can palliative care receive With such recognition can palliative care receive the support and resources it requires to the support and resources it requires to advanced forward and serve the population in advanced forward and serve the population in need.need.

Specialist Palliative CareSpecialist Palliative Care3 year fellowship 3 year fellowship programmeprogramme post MRCP/MMEDpost MRCP/MMED

Structured training:Structured training:6 months : basic oncology / radiotherapy6 months : basic oncology / radiotherapy1 year : in1 year : in--patient palliative medicine (patient palliative medicine (SelayangSelayang))3 months : community palliative medicine (local)3 months : community palliative medicine (local)1 year :overseas training (1 year :overseas training (AustAust / UK / Singapore)/ UK / Singapore)3 months : elective training (geriatrics, rehab, 3 months : elective training (geriatrics, rehab, psypsy))

SpecialisedSpecialised CareCare

British Assoc. for Pall Care recommendations: British Assoc. for Pall Care recommendations: 1 consultant : 160,000 population1 consultant : 160,000 population

Based on population statistics and standards of Based on population statistics and standards of human development in Malaysia as compared to human development in Malaysia as compared to UK, the current suggested norm for palliative UK, the current suggested norm for palliative care specialists is:care specialists is:1 consultant : 1,000,000 population1 consultant : 1,000,000 population

Palliative Medicine Physicians Palliative Medicine Physicians in Public Sectorin Public Sector

Currently 1 trained consultant, 2 physicians Currently 1 trained consultant, 2 physicians in training to complete by end of 2009 / early in training to complete by end of 2009 / early 20102010

1 physician in HUKM in training to complete in 1 physician in HUKM in training to complete in 200920092 physicians in UMMC in training2 physicians in UMMC in training

Step 3:Step 3:

OrganisationOrganisation and and standardisationstandardisation

Step 3: Step 3: OrganisationOrganisation and and standardisationstandardisation

Need to improve and Need to improve and standardisestandardise level of care in each level of care in each unit.unit.

Need to coordinate and improve the development of Need to coordinate and improve the development of palliative care in each state.palliative care in each state.

Need to coordinate and improve community palliative Need to coordinate and improve community palliative care services in each state.care services in each state.

Need for good link and partnership with NGO and to Need for good link and partnership with NGO and to develop policies to allow partnership with NGO for develop policies to allow partnership with NGO for community carecommunity care

Hospital-based Palliative Care

Services

PCU or PCTPCU or PCT

Palliative care unit (PCU) = Palliative care unit (PCU) = 4 or more 4 or more beds.beds.

Palliative care team (PCT) = Palliative care team (PCT) = less than 4 less than 4 beds.beds.

Palliative Care Beds in MalaysiaPalliative Care Beds in MalaysiaBritish Pall Care 2000 guidelines recommend:British Pall Care 2000 guidelines recommend:3636--54 beds per million population54 beds per million populationPalliative Care Australia 2003 guidelines recommend:Palliative Care Australia 2003 guidelines recommend:67 beds per million population67 beds per million population

Based on current healthcare resources and Based on current healthcare resources and human development standards, the current human development standards, the current suggested beds required is 20 beds per million suggested beds required is 20 beds per million population. (532 beds)population. (532 beds)

Currently we have 6.8 beds per million Currently we have 6.8 beds per million populationpopulation

Beds but do they function?Beds but do they function?

Majority of beds not providing specialist palliative Majority of beds not providing specialist palliative care.care.

For units without specialist care no standard of care For units without specialist care no standard of care or guidelines available yet.or guidelines available yet.

Concept of palliative care still not well understood Concept of palliative care still not well understood even within established units.even within established units.

Essential drugs for palliative care still not available Essential drugs for palliative care still not available in established units or not easily obtained. in established units or not easily obtained.

Characteristics of Successful Characteristics of Successful UnitsUnits

Dedicated Clinical leadershipDedicated Clinical leadership

Supportive Hospital director and Matron Supportive Hospital director and Matron providing resources.providing resources.

Independent unit with separate 24 hour staffing Independent unit with separate 24 hour staffing and adequate nurse pt ratio (ideally 1:4).and adequate nurse pt ratio (ideally 1:4).

Dedicated medical officers working under the Dedicated medical officers working under the supervision of the specialist in charge. supervision of the specialist in charge.

New definition of Palliative Care New definition of Palliative Care UnitUnit

Must be supported by hospital administrationMust be supported by hospital administration and and given continuous support and effort to provide given continuous support and effort to provide appropriate resources.appropriate resources.

Must have a dedicated clinical leaderMust have a dedicated clinical leader ((ieie specialist or specialist or senior medical officer) who has clear understanding of senior medical officer) who has clear understanding of palliative medicine and basic principles of palliative medicine and basic principles of specialisedspecialisedpalliative care even though may not be a specialist in palliative care even though may not be a specialist in palliative medicine. palliative medicine.

Need not have a dedicated ward or beds but Need not have a dedicated ward or beds but MUST MUST have admission rights and designationhave admission rights and designation of patients to of patients to be under the care of the palliative care unit as the be under the care of the palliative care unit as the primary team. primary team.

New definition of Palliative Care New definition of Palliative Care UnitUnit

Must have dedicated medical officersMust have dedicated medical officers who work who work under the direct supervision of the clinical leader / under the direct supervision of the clinical leader / specialist in charge. specialist in charge.

Must have dedicated nursesMust have dedicated nurses whose job description is whose job description is specific to provide palliative care either hospital based or specific to provide palliative care either hospital based or sometimes community based. sometimes community based.

Must have access to essential drugsMust have access to essential drugs for palliative care for palliative care and certain equipment such as syringe drivers etc.and certain equipment such as syringe drivers etc.

Ideal Ideal OrganisationOrganisation structurestructure

Department of Medicine / Other Dept interested

Palliative Medicine Palliative Medicine UnitUnit

Department of Department of AnaesthesiaAnaesthesia

Pain SpecialistsPain Specialists

Consultant Palliative Medicine Physician / Other Specialist /

clinical Leader

Medical OfficersMedical Officers

Matron Matron

PCU Staff PCU Staff nurses (post nurses (post basic + nonbasic + non--postpost--pasicpasic))

PCU ward PCU ward sistersister

HOSPITAL DIRECTORHOSPITAL DIRECTOR

Community Community Palliative Care Palliative Care

ServicesServices

Hospital Based Palliative CareHospital Based Palliative Care•• Consultative ServiceConsultative Service

•• In patient Palliative Care UnitIn patient Palliative Care Unit

Community Palliative CareCommunity Palliative Care

•hospice organisation

• homecare team.

ESSENTIAL RelationshipESSENTIAL Relationship

Community Palliative CareCommunity Palliative Care

Majority provided by NGOs and very little Majority provided by NGOs and very little by MOHby MOH

NGOs are a vital resource that helps NGOs are a vital resource that helps provide comprehensive palliative care to provide comprehensive palliative care to patients.patients.

MOH must continue to support NGOs MOH must continue to support NGOs

Supporting NGOs through:Supporting NGOs through:Medical specialist inputMedical specialist input

Networking to supply medications to patientsNetworking to supply medications to patients

Improve referral systemsImprove referral systems

Education of volunteers and NGO staffEducation of volunteers and NGO staff

FundingFunding

Community Care in MOHCommunity Care in MOH

44% of population live in rural areas44% of population live in rural areas

At present NGOs exist only in urban At present NGOs exist only in urban areas. areas.

Need for homecare services in rural areas Need for homecare services in rural areas not serviced by NGO groups. not serviced by NGO groups.

Can we Can we utiliseutilise our existing public our existing public health network? health network?

Where are we Where are we going?going?

Developments in progressDevelopments in progress

On going specialist training and upgrading of On going specialist training and upgrading of state hospital units.state hospital units.

Increasing awareness in government medical Increasing awareness in government medical schools schools –– HUKM and UMMC developing HUKM and UMMC developing palliative care units and training specialists.palliative care units and training specialists.

Palliative care undergraduate curriculum in most Palliative care undergraduate curriculum in most major medical schools.major medical schools.

Developments in progressDevelopments in progressDevelopment of Cancer Pain Management Development of Cancer Pain Management Clinical Practice Guideline.Clinical Practice Guideline.

Development of Post Basic Palliative Care Development of Post Basic Palliative Care Nursing course (Curriculum still in planning)Nursing course (Curriculum still in planning)

Development of Development of PaediatricPaediatric Palliative Medicine Palliative Medicine (Hospital (Hospital MelakaMelaka))

Incorporating palliative care training in public Incorporating palliative care training in public health sector geriatric health sector geriatric programmeprogramme..

Are We Are We Progressing?Progressing?

“We are taking too long to develop”

“You mean it will take 3 years to train ONE specialist?!”

““We cannot be waiting for the We cannot be waiting for the government while people are government while people are

sufferingsuffering””

START LOWSTART LOWGO SLOW GO SLOW

BUT DO SOBUT DO SO