APHN Palliative Care in Public Health System Ednin Hamzah CEO, Hospis Malaysia Vice Chair, Asia Pacific Hospice Palliative Care Network Board of Trustees, Worldwide Hospice Palliative Care Alliance ednin@hospismalaysia.org
Hospis Malaysia
Aims Development of palliative care A public health model Challenges and opportunities
Societal / cultural Dying Normal and routine Built on community relationships Caring and celebrating the person End of life is more than just medical care Death and loss are inevitable and universal It is everyone s business
Medical dying?
Dame Cicely Saunders
Cicely Saunders : Palliative Care Challenges the medical model of dying Importance of pain management Unit of care to include family Care beyond death to bereavement Quality of life Model for a new medical specialty - 1987
New York Times 2009 Elderly lady with terminal cancer, broke her hip, perhaps due to a mild stroke After surgery, everything went downhill and she died 2 weeks later the doctor said you ve got about 3, 6 or 9 months. Because of the weakness of your heart, if you have an operation, there are certain risks if you don t, you re just going to waste away and your quality of life will be terrible Barack Obama
If a disease is cured, it is only because the person dies from something else.. Medicine is not good at acknowledging dying
Palliative Care resolution passed at 67 th World Health Assembly May 2014
Level of palliative care development
UK 1 st Taiwan 6 th Singapore 12 th Japan 14 th S Korea 18 th Hong Kong 22 nd Malaysia 38 th Thailand 44 th Indonesia 53 rd Vietnam 58 th India 67 th China, Myanmar, Philippines and Bangladesh below 70
How has palliative care developed in Asia? Local champions Visionary, determination and resilience Supportive environment eg drug availability Create services : centres of excellence Collaboration Government involvement
If palliative care is the answer, what is the question? Hoverman JR. Health Care Delivery 2012
Palliative Care What is it? Scope of care? Who can access? What are the interventions? What kind of services? How to be measure or monitor? Standards of care? How much will it cost?
Role of public health Assessment and monitoring of the health of the community to identify health problems Public policies that solve identified problems Access to care Evaluation of care provision
Palliative Care needs The number of people dying each year is always the number of people in the last year of life ( most have palliative care needs ) How many have access to palliative care? Where are people dying? How are they dying? What were their healthcare hopes and preferences?
Palliative care as a public health issue Affects all people Need for better information on end of life care Potential to prevent suffering Potential to prevent disease
World Health Organisation Many countries have not yet considered palliative care as a public health problem and, therefore, do not include it in their health agenda it is essential to promote a public health approach in which comprehensive palliative care programs are integrated into the existing health systems and are tailored to the specific cultural and social context of the target populations. Sepulveda C et al. Palliative Care: WHO Global Perspective. JPSM 2002
Situational analysis Population Disease demographics Socioeconomic statistics Community resources
Palliative Care needs analysis Public survey about palliative care Mapping of community palliative care service with a suggestion to standards
Global morphine consumption 2013 ( Denmark 86.02 South Africa 4.37 Hong Kong 3.42 Brunei 1.99 Japan 1.75 Malaysia 1.33 South Korea 1.22 China 1.18 Singapore 1.17 mg / capita ) Global Mean : 6.27 Thailand 1.08 Sri Lanka 0.5 Vietnam 0.44 Nepal 0.18 Philippines 0.14 India 0.11 Indonesia 0.10 Bangladesh 0.03 Myanmar 0.0058
Issues with opioids Governments do not differentiate between access for patients vs misuse High level of bureaucracy Poor understand of use by healthcare workers Public fear
Palliative Care as a specialty / Australia New Zealand Hong Kong Japan Taiwan Singapore Malaysia subspecialty Creates career pathway and establishes peers with other specialties
Which model Identification of local champion Building organisation capacity Recruitment, remuneration and retention Quality and quantity Referral networks and integration Coordination in healthcare network and seamless referral system
WHO Public Health Model Step 1 : Engage opinion leaders Step 2 : Situational analysis Step 3 : Develop Action Plan Step 4 : Establish national steering committee Step 5 : Develop components of the model
Developing outcomes - immediate Identify opinion leaders policy, clinical, regulators, administrators Needs and situational analysis completed Action plan and timelines Centres of excellence identified Outcome indicators identified
Intermediate Policy : Pain relief, National Palliative Care, Cancer, Funding etc Drug availability : Opioid access, use, essential medicines Education : Develop expert knowledge in key people to lead services, public awareness Implementation : National plan implemented, service development
Long term Policy : national policies support palliative care, NGO s incorporate palliative care, services adequately funded Drug availability : Meet patient needs. Medicine adequate for community Education : All healthcare workers have core palliative care knowledge and skills, increased experts and workforce Implementation : Good coverage eg > 80%, communities own and support services, national model and standards, accreditation Stjensward J et al. JPSM 2007
Compassionate cities Community development Raising education and awareness Environmental and behaviour change at work, play and worship Making access/ quality to health/social care a civic matter Making prevention, harm reduction and early intervention priorities Disembodying death and dying Making end of life care everybody s responsibility
Public Health Palliative Care Building public policies that support dying, death, loss and grief Creating supportive environment ( particularly social support ) Strengthening community action Developing personal skills in these areas Re-orientating health system Kelleher. Health promoting palliative care 1999
Public Health challenges Geopolitical issues geography, economic stability, conflict, global recession Funding services, medicines, competing priorities Professional attitudes, prestige, career progression Awareness lack of ( public, professionals, funders, policy makers )
Public Health challenges Education and Training access to courses, accreditation, inclusion into curriculum, teaching staff Culture real and perceived differences Opioid availability restrictive regulations, myths, prescribing habits, inhibitions Policy recognition
Palliative Care is model for modern medicine Patient centred rather than disease centred Holistic care so that care involves more than the physical domain Interaction with social and enviromental domain Coordinated teamwork
Palliative Care is model for modern medicine Objectives based on patients best interest Humanisation of the relationship between doctor and patient Comprehensive bioethical perspective Dialogue based practice Vocational, philosophical and empathetic nature
Practical challenges Inpatient models geographically challenging Cancer focus not generelisable Is community inclusive enough? Ensuring end of life care is consistent with current approach to healthcare
Financing palliative care Lancet Commission 2017 Argues for palliative care to be included as part of Universal Health Care Essential Package of palliative care may cost as low as USD 2.16 or 2 3% of UHC for LIC ( USD 0.78 for LMIC ) Significant cost saving if countries work together
Role of WHO Following up on WHA resolution Inclusion of palliative care into UHC Some governments already making progress Measurements
In Malaysia Pioneers set up palliative care 1991 Government involvement 2000 Medical subspecialty 2005 National Strategy 2010 National Paediatric Palliative Care Strategy 2012 2017 developing National strategy
Key elements for successful integration Vision larger than any specific programme Leadership may change but vision remain Communication and collaboration Willingness to adapt to changing needs Commitment to education Partnership between formal health sector and civil society
Conclusion for Thailand There are several models of palliative care in Asia There is already isolated services and local champions that need to be linked A need for national leadership, collaboration ( not competition ) and consistent strategy A need for resilience and humility