Dr.

Richard Lim Boon Leong MBBS(Mal) MRCP(UK) Consultant Palliative Medicine Physician, National Advisor for Palliative Medicine, Ministry of Health Malaysia

NEEDS or WANTS
MUST HAVE vs NICE TO HAVE

What the individual feels they want (felt need)

What the individual demands (expressed need) What a professional thinks the individual wants (normative need) How we compare with others areas or situations (comparative need).
Bradshaw J 1972

Who decides on the need ?

Knowledge of what might be available and possible, derived from friends, family, culture, media, the internet, health and social care professionals, etc. Developments in knowledge Expectations from service providers Information about what works Ability to express need some people are more eloquent or able to express need than others Effect of peers and information on professionals What can be described and operationalized.
Higginson & Goodwin 2001

Do we need palliative care ?

If Yes then what is it that we are saying we need?

Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.

provides relief from pain and other distressing symptoms; affirms life and regards dying as a normal process; intends neither to hasten or postpone death; integrates the psychological and spiritual aspects of patient care; offers a support system to help patients live as actively as possible until death; offers a support system to help the family cope during the patients illness and in their own bereavement;

uses a team approach to address the needs of patients and their families, including bereavement counselling, if indicated; will enhance quality of life, and may also positively influence the course of illness;
is applicable early in the course of illness, in conjunction with other therapies that are intended to prolong life, such as chemotherapy or radiation therapy, and includes those investigations needed to better understand and manage distressing clinical complications.

Co-management with Mainstream

Disease-modifying therapy (lifeprolonging or palliative in intent) D E A T H

Palliative Care Management

B E R E A V E M E N T

Palliative Care

LUXURY DYING?

BASIC NECESSITY ?

Palliative Care is an urgent humanitarian need worldwide for people with cancer and other chronic fatal diseases.
Palliative care is particularly needed in places where a high proportion of patients present in advanced stages and there is little chance of cure.

Standard 6: Patient and Family Rights The facility supports the patients right to appropriate assessment and management of symptoms The facility supports the patients right to respectful and compassionate care at the end of life Care provided is considerate and respectful on the patients personal values and spiritual beliefs/religion.

Obviously there is a NEED for palliative care

We cannot cope with the workload!

Wards are full! No active management, discharge!

Tak cukup staf-laah!!

Is it possible to provide palliative care is our current health care system?

Assess and treat basic physical symptoms

Pain Respiratory problems (dyspnoea, cough) GI problems (nausea, vomiting, constipation,

diarrhoea and mouthcare) Wound management Insomnia

Address Psychological, Emotional and Spiritual Issues

Psychological distress Suffering of relative and/or caregiver Anxiety

Care planning and coordinating issues

Help set goals of care

Communication
Breaking bad news, prognosis, management at eol Educate other healthcare professionals on pall care

The Essence of Palliative Care is Caring and Good Medical Practices

How much are our needs ?

Existing specialist and generic palliative care provision

Incidence/prevalence of advanced disease and associated symptoms

Effectiveness and costeffectiveness of palliative care provision and interventions

Franks 1999

Palliative care needs may be common across a wide range of clinical diagnoses and diseases Epidemiologically based needs assessments for palliative care differ from other health-needs assessments which are commonly diseasebased. May be estimated is 3 ways:
Diagnosis based Symptom /Problem based Type of care required

Minimal Estimated from deaths of 10 main causes that commonly require palliative care: Neoplasm Heart failure Renal failure Liver failure COPD Motor Neuron Disease Parkinsons disease Huntingtons disease Alzheimers disease, HIV/AIDS

Mid-range Patients where cause of death is similar to diagnosis during any previous admission within 1 year prior to death.

Maximal Deaths from all causes except: During pregnancy, childbirth, or puerperium Originating during the perinatal period Resulting from injury, poisoning, and certain other external causes

McNamara et al 2006

Condition

Percentage of deaths

Estimated number of deaths

Malignant neoplasms Nephritis, nephrosis and nephrotic syndrome Chronic lower respiratory disease Disease of digestive system Chronic CVS ds HIV/AIDS TOTAL

10.85 3.58 2.03 4.98 4.23

13,547 4,470 2,534 6,218 5,275 805 32,052

Other conditions not mentioned:

Neurodegenerative diseases Severe dementia Paediatric conditions requiring palliative care apart from neoplasms Psychosocial and spiritual care for family

What existing services do we have providing for the need?

Hospital Based Palliative Care Services

In-patient palliative care units Out-patient palliative care clinics Consultative palliative care services

Community Based Palliative Care Services

NGO hospice home programmes Outpatient palliative care clinics Palliative care day centres

Stand alone step-down care facilities

Stand alone hospice Independent nursing homes

31 MOH hospitals (all states but Perlis) 2 University hospitals Private hospitals? (at least 2) Total beds = 205
5 hospitals with palliative medicine specialists 40 doctors including 8 trained specialists 140 nurses with on the job training

Hospital Perlis

No. of Beds

Inpatients Outpatients 2011 2011

Kedah Hospital Sultanah Bahiyah

P.Pinang H.P.Pinang H. Bkt. Mertajam H.Seberang Jaya H.Kepala Batas(IPPT) Perak H. RPB Ipoh H.Batu Gajah H.Seri Manjung H. Taiping H. Kuala Kangsar H. Slim River

4 12 8 PCT 7 7 17 4 4 4 2

NA 632 71 58 50 255 103 20 0 0 0

NA 521 129

2273 63 44 0 2 0

Hospital Kelantan H.RPZII Kota Bharu Terengganu H.SNZ Kuala Terengganu Pahang H. TAA Kuantan HoSHAS Temerloh

No. of Beds

Inpatient 2011

Outpatients 2011 80

20

2(non fixed)
8 New (4) 12 PCT PCT 982 187

NA
136 NA 1350 134 311

Selangor H.Selayang H.TAR Klang

W.Persekutuan HKL

Hospital
Melaka H. Melaka Negeri Sembilan H.TJ Seremban Johor H.SA Johor Bharu H. Batu Pahat H. Muar H.Segamat

No. of Beds

Inpatients Outpatients 2011 2011

312 NA 171 53 NA 22 NA 63

6 PCT 8 PCT PCT PCT

Hospital

No. of Beds

Inpatients 2011

Outpatients 2011 1029

Sarawak SGH Kuching H.Miri

Sabah QEH Kota Kinabalu H. Tawau H.Sandakan H. Kudat H. Ranau TOTAL 31 hospitals

32 4 16 8 6 2 PCT 326 NA NA NA NA

281

197 beds

9,658 Patient Encounters

Hospital

No. of Beds

Inpatients 2011

Outpatients 2011

HUKM UMMC Total

0 8 8 beds

360 700

377 NA

1,467 Patient Encounters

27 NGOs registered as palliative care service providers. 19 members in Malaysian Hospice Council All states except Perlis.
150 nurses (75 fulltime) 52 doctors (12 fulltime) 250-300 lay volunteers

NGO Hospice

b/f

New cases

Total

Sandakan Klang Melaka Seremban Kasih Johore Bharu PCAKK Taiping Tawau

76 97 24 16 40 57 79 16 25

32 271 60 140 198 274 198 18 39

108 368 84 156 238 331 277 34 64

NGO Hospice

b/f

New cases

Total

Kedah Penang PPCS Cancercare Kelantan Terengganu Sarawak HHP Sabah Total

102 128 80 15 50 28 NA NA 833

142 484 281 78 90 21 NA NA 2356

244 612 361 93 140 49 NA NA 3129

NGO Hospice

Number of cases

Hospis Malaysia Hospis Assunta Hospis Miri Charis Hospice Mount Miriam Hospital Persatuan Hospis Pahang Hospis Keningau

1636 (2010) NA 51 (2011) 427 home visits NA NA NA NA

Pure Lotus Hospice of Compassion 16 beds in P.Pinang Plans to build other similar homes Admits up to 700 patients per year
2 doctors (1 fulltime) 6 nurses / 5 nursing aides

Effectiveness and Cost-effectiveness of palliative care provision ?

Malaysia overall ranked 33rd out of 40 countries looking at quality of death Index. Basic end-of-life healthcare environment ranked 37th out of 40.
Availability and Cost of end of life care ranked 22nd Quality of end of life care ranked 28th
(The Economist Intelligence Unit 2010)

Malaysia Malaysia

Malaysia

So how do we move forward ?

How can we ever hope to meet the needs of the entire nation?

WORKING TOGETHER !

1st meeting on 9th Mar 2010

First meeting involving representatives from MOH,

Universities, MHC and Hospis Malaysia Mainly to discuss how we might work together and move forward.

2nd meeting of working group 8-9th Nov 2011

Visiting consultants Prof. MR Rajagopal, Dr. Ghauri

Aggarwal and Dr. Jan Maree Davis. Group discussions on ideas for future developments and strategies in key areas

Stjernsward J et al. JPSM 2007;33(5)

Developing Policy

National Cancer Management Blueprint 10 year Master Plan: 2006-2015

Proper needs assessment

Define our target populations Identify and track all service providers Requires a dedicated working group

Policy on minimum standards of care and key-performance indicators

To justify effectiveness of service

Cost effectiveness analysis

To determine budget requirements and clearer

evidence for financial support

Public awareness
Public education forums and media campaigns right to pain relief right to dignified death right to decide on care and information needs

www.dyingmatters.org

www.lifebeforedeath.com

Drug Availability

Dangerous Drug Act 1952 (revised 1980)

14(2) : Nothing in this section shall be deemed to render unlawful the administration of any such drug by or under the directions of a registered medical practitioner or a registered dentist or a medical or dental officer of any visiting force lawfully present in Malaysia who is resident in Malaysia on full pay and acting in the course of his duty.

Morphine aqueous / SR tablet / Injection 10mg/ml

Fentanyl Transdermal / Injection 100mcg/ml

Oxycodone Immediate release / Controlled release

Majority of drugs in the IAHPC and WHO essential drug list are available in Malaysia.
Access to most drugs is possible with current MOH pharmacy policy SPUB(Sistem Pendispensan Umum Baru) Most important is educating healthcare providers on HOW to use it appropriately.

Education

Undergraduate teaching in major medical schools Teaching in certain core postgraduate specialties (Int. Medicine , Gen. Surgery)
Fellowship training in Palliative Medicine Subspecialty Development of Palliative Care Nursing / OT/Physio Advanced Diploma (Currently in progress)

NGO training programmes doctors, nurses , volunteers and lay public

MOH annual education / training grants
For running courses and participation at

workshops/conferences

Universal undergraduate palliative care curriculum involving all medical schools.

Incorporation of palliative care components in all post-graduate medical programmes. Agreement on training curriculum and components of Specialist Palliative Care including Paediatric Palliative Care.

Establish a network of accredited professionals to provide peer support and mentoring.

Create a system of continuing professional development in the field of palliative care Promote and coordinate research in palliative care

Implementation

Strengthen current specialist palliative care units.

Increase resources to improve excellence in care.

Strengthen non-specialist palliative care services.

Provide mentorship and education for service

providers Train and provide specialist cover for these units

Increase standards of service provision and support for NGO community services.
Improve partnerships between government and NGO services. Tap into existing government homecare services and up-skill staff to provide effective palliative care at home.

Tertiary Care

Specialist Palliative Care

Secondary Care

Basic Hospital Palliative Care

Primary Care

GP Palliative Care

Palliative Care : A Basic Skill for all health professionals

Whose need is it ?