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.

Disease-modifying therapy (life-prolonging or palliative in intent)

Palliative Care Management

DEATH

BEREAVEMENT

Palliative Care

Co-management with Mainstream

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 patient’s right to

appropriate assessment and management of symptoms

The facility supports the patient’s right to respectful and compassionate care at the end of life

Care provided is considerate and respectful on the patient’s 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 ?

Franks 1999

Existing specialist and generic palliative care provision

Effectiveness and cost-effectiveness of palliative care provision and interventions

Incidence/prevalence of advanced disease and associated symptoms

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 disease-based.

May be estimated is 3 ways: Diagnosis based Symptom /Problem based Type of care required

Minimal Mid-range Maximal

Estimated from deaths of 10 main causes that commonly require palliative care: •Neoplasm •Heart failure •Renal failure •Liver failure • COPD •Motor Neuron Disease • Parkinson’s disease • Huntington’s disease • Alzheimer’s disease, • HIV/AIDS

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

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 10.85 13,547

Nephritis, nephrosis and nephrotic syndrome

3.58 4,470

Chronic lower respiratory disease 2.03 2,534

Disease of digestive system 4.98 6,218

Chronic CVS ds 4.23 5,275

HIV/AIDS 805

TOTAL 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 No. of Beds Inpatients2011

Outpatients 2011

Perlis

Kedah Hospital Sultanah Bahiyah

4

NA

NA

P.Pinang H.P.Pinang H. Bkt. Mertajam H.Seberang Jaya H.Kepala Batas(IPPT)

12 8 PCT 7

632 71 58 50

521 129

Perak H. RPB Ipoh H.Batu Gajah H.Seri Manjung H. Taiping H. Kuala Kangsar H. Slim River

7 17 4 4 4 2

255 103 20 0 0 0

2273 63 44 0 2 0

Hospital No. of Beds Inpatient 2011

Outpatients 2011

Kelantan H.RPZII Kota Bharu

20

80

Terengganu H.SNZ Kuala Terengganu

2(non fixed)

NA

Pahang H. TAA Kuantan HoSHAS Temerloh

8 New (4)

136 NA

Selangor H.Selayang H.TAR Klang

12 PCT

982 187

1350 134

W.Persekutuan HKL

PCT

311

Hospital No. of Beds Inpatients2011

Outpatients 2011

Melaka H. Melaka

6

312

Negeri Sembilan H.TJ Seremban

PCT

NA

NA

Johor H.SA Johor Bharu H. Batu Pahat H. Muar H.Segamat

8 PCT PCT PCT

171 53 NA 22

63

Hospital No. of Beds Inpatients2011

Outpatients 2011

Sarawak SGH Kuching H.Miri

32 4

1029

Sabah QEH Kota Kinabalu H. Tawau H.Sandakan H. Kudat H. Ranau

16 8 6 2 PCT

326 NA NA NA NA

281

TOTAL 31 hospitals

197 beds

9,658 Patient Encounters

Hospital No. of Beds Inpatients2011

Outpatients 2011

HUKM

0

360

377

UMMC

8

700

NA

Total

8 beds

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 76 32 108

Klang 97 271 368

Melaka 24 60 84

Seremban 16 140 156

Kasih 40 198 238

Johore Bharu 57 274 331

PCAKK 79 198 277

Taiping 16 18 34

Tawau 25 39 64

NGO Hospice b/f New cases Total

Kedah 102 142 244

Penang 128 484 612

PPCS 80 281 361

Cancercare 15 78 93

Kelantan 50 90 140

Terengganu 28 21 49

Sarawak NA NA NA

HHP Sabah NA NA NA

Total 833 2356 3129

NGO Hospice Number of cases

Hospis Malaysia 1636 (2010)

Hospis Assunta NA

Hospis Miri 51 (2011) 427 home visits

Charis Hospice NA

Mount Miriam Hospital NA

Persatuan Hospis Pahang NA

Hospis Keningau 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.

Specialist Palliative Care

Basic Hospital Palliative Care

GP Palliative Care Primary Care

Secondary Care

Tertiary Care

Palliative Care :

A Basic Skill

for all health

professionals

Whose need is it ?