Status of Palliative Care Services in the Region

Palliative and EOL Care
ASEAN Region
Ayda G. Nambayan, RN, PhD
Consultant
Oncology and Palliative Care Education
Content
• Need for palliative and end-of-life care
• Status and challenges of palliative care in the
ASEAN region
• Our dream (Dr. Henry Lu and I)
– Advancing palliative care in the region
Distribution of major causes
of death worldwide
Injuries
66%
Global Atlas of Palliative
Care at the End of Life, 2014
Pain at the end-of-life
• Most distressing symptom
– 50% of cancer patients experience pain
– 66% of advanced cases have disabling pain
– 80 % receive little or no pain medication
• Global consumption of essential medicines
– disparities in morphine consumption between high
and low- and middle-income countries:
– Unmet needs to manage pain and other distressing
symptoms at the end of life
WHO
Palliative Care in the World
• 75 countries (32%) had no known palliative-care
activities
• 136 (58%) of the world's 234 countries had at
least one palliative care service
• 23 (10%) had capacity-building activities only but
no services
• 20 countries (8.5%) has palliative care well
integrated into mainstream health-care
• 83 % of the world's population resides in
countries with minimal or no access to pain
control medication
Worldwide Palliative Care Alliance
International Observatory on End of Life Care, 2011
Seya et al 2011
Brunei
Cambodia
East Timor
Indonesia
Laos
Malaysia
Myanmar/Burma
Philippines
Singapore
Thailand/Siam
Vietnam
11 Countries/620M people
• One of the most populated regions in the
world
• 2 countries classified as Developed Countries
(Singapore and Brunei)
• Most with both urban and rural components
creating inequity in resource allocation
• Differences in historical development and
nature of health-care systems
Problems
• Many patients need but do not receive the supportive,
palliative, and end-of-life care
• Close link between the meaning of palliative care and
available economic resources
• Patchy availability of palliative care
– mostly confined to large urban population centers
• Constrained resources and poor transport services
– inequity to palliative care access in rural and sparsely
populated areas
• Too many patients are denied access to optimum and
affordable palliative and end-of-life care
– patients who return to their homes and villages are unable
to access adequate pain relief
th
4 Asian Oncology Summit, 2012
Palliative Care in Asia
• Pain and palliative care programs form one entity
• No known palliative care activities
– Afghanistan, Bhutan, North Korea, Laos, and many of the
Pacific Island nations
• Palliative care is largely integrated into mainstream
health-care provision
– Hong Kong, Japan, Singapore, S. Korea and Taiwan.
• Isolated or patchy provision of palliative-care services
– Indonesia, Philippines and India
• Preliminary integration into mainstream health-care
provision
– China, Malaysia, Thailand and Mongolia
Asian Challenges
• Many palliative care services in the region may be
working in relative isolation
• Prevalence of pain and suffering, yet pain and
symptom control measures are far from adequate
• Many health care and palliative care providers
– are not trained in palliative care principles and practice
– Are unaware that pain should be assessed and treated
using the WHO pain treatment ladder
– do not practice around-the-clock pain control
6th Asia Pacific Hospice Conference, 2005
World Hospice and Palliative Care Alliance, 2014
Addt’l Challenges
• Culture
– Beliefs/fear about death and dying
– Stigma associated with the disease
– Disclosure practices
• Terminology problems
– terms and their definitions are poorly understood and not
agreed upon
• Governmental Involvement
– Wide variation within the ASEAN countries
• Policies and guidelines
• Support and resources
• Development and implementation
Educational Challenges
• Lack of education and training
– Short term training
– Lack of specialization
• Inadequate understanding of comprehensive
palliative care
– Delayed referral
– Unorganized care
– Inefficient symptom assessment and management
– Lack of family care
Essential palliative care medications
• Access to opiods
– 83% of the world’s countries - low to non-existent
access to opioids
– 4% have moderate access
– 7% have adequate access
• 85% of the world’s population lacks adequate
access to opioid medications for pain control
– 8% of total medical morphine consumption
• 92% of medical morphine is consumed by
developed countries
International Narcotics Control Board, 2012
Palliative Care Medications
• Access and availability
– Big, urban vs small, rural hospitals
– Private, affluent vs government hospitals
– Pharmacy supply and distribution
• Regulatory and legal requirements
– Problematic and cumbersome regulations
• Awareness of the need
– Supply depends upon consumption
Problems of Opiod Access
• Overly strict regulation
• Limitations on available forms of medication
particularly oral opioids
• Lack of supply and distribution systems
• Limitations on who can prescribe
• Fear of law enforcement intervention into medical use
• Restricted opiod access to treat pain
– Tertiary centers (Urban vs Rural)
– Unavailable at primary health care units near to the
patient’s home
• Lack of effective pain medication forces patients to remain in
hospital to die
– imposes a further financial burden on the family
– separates them from community support
Palliative Care – ASEAN Region
• Singapore
– Late 1980’s, started as a grass root movement in the
community with charitable funding, Subsequently
receiving partial governmental support
• Well-developed Hospice home-care services covering whole
island
• Inpatient palliative-care beds are available only in independent
hospices and community hospitals.
– 1990’s, all government hospitals now have consultative
palliative-care services and outpatient clinics
– Palliative medicine was recognized as a medical
subspecialty in 2007 and training of specialists is well
underway.
– A national strategy for palliative care was adopted by the
government in 2011.
Viet Nam
• 15 hospitals offer palliative care services
• No national palliative care guidelines or policy
• Limited national palliative care training program for care providers
– National Cancer Hospital
– Hue Cancer Hospital
– Kim Long Charity Clinic in Hue
• Problematic access to palliative care medications esp. pain meds
– Tramadol and weak opiods are available in private pharmacy
but not in gov’t hospitals
– Under-ordering of pain meds due to non prescription 2o to fear
or lack of awareness
– 2014 – removal of some restrictions RT pain med access
WHO Rapid Analysis Report, 2006
Indonesia
• Lack of certified physicians in palliative care
• Enhancing Palliative Care Project (Jakarta)
– Singapore International Foundation, Jakarta
Cancer Foundation and Rachel House
• 3 year training program to enhance the practice of
palliative care
– Train-the trainer schema
– Leadership roundtable promised to increase access to PC,
targeting 70% of cancer patients
Thailand
• Isolated services provided by a small number of
dedicated individuals
• Centers affiliated with Medical Schools provide
effective palliative services
• Problematic access to opioids in part due to issues
with illicit drug trafficking
• Tendency for aggressive disease management due to
“cure” orientation
• 2014 - Formation of the Thai Palliative Care Society
• Ministry of Health issued health policy to incorporate
palliative care into mainstream health care system
• 7 projects aimed at promoting and delivering
palliative care in Thailand including professional and
public education
Philippines
• 1989 – pain control became an essential component of Cancer
Care
• 1991 – 1st Home Hospice
• 1994 – PCS initiated series of training programs
Ayala-Alabang and Madre de Amor Hospice
• 1995 – 1st Hospice Convention (PCS and DOH)
• 2000 – Hospice and Palliative Care Training (UP-PGH Dept of
Family Medicine
• 2003 - National Hospice Palliative Care Council of the Philippines
(NHPCCP) was launched
PAL Care (Hospice, Consultation, Education and Service)
• 2010 – CHED mandate for inclusion of palliative/hospice care in
all health care curricula
• Several isolated PC training around the country
Palliative Care and PI Politics
• Palliative and End-of-Life Care Act 2009
– provides mandates for the establishment of a palliative
care trust fund to financially support palliative and end-oflife care services in all private and governmental hospitals,
healthcare provider education and training, research, and
compassionate care leave benefits for caregivers and
families of patients with a life-threatening illness
• Status of the Bill – pending
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SB 3366, Hon. A. Pimentel, 2009
HB 2542, Hon. JV Ejercito, 2010
HB 4627, Hon. GM Arroyo and DM Arroyo, 2011
SB 3342, Hon. FR Marcos Jr., 2012
Asia Pacific Hospice Palliative Care
Network (AHPN)
• MISSION
– To promote access to quality hospice and palliative care
for all in the Asia Pacific region.
• VISION
– To be an effective network in Asia Pacific that promotes
and supports the alleviation of pain and suffering from
life-limiting illnesses.
• GOALS
– Reach out to more communities in need of palliative care;
– Build sustainable capabilities for service development,
advocacy, education and research.
AHPN’s Lien Collaborative
Education and Training
• In-country Training of Trainers programs
– Partnering with a selected tertiary teaching hospital to host the
training.
– Training is 6 weeks spread over 3 years
• Overseas Clinical Fellowships
– Selected candidates and potential leaders spend three months clinical
training at established palliative care units in the region for more indepth training
• Essential Medications Program –
– This program targets drug regulators and administrators to enable
essential medications to reach patients who need them
– Done in collaboration with associated agencies
• Pain & Policy Studies Group in Wisconsin, USA, a World Health Organization (WHO)
Collaborating Center.
Lien Collaborative
Myanmar
Bangladesh
Sri Lanka
www.ahpn.org
We invite you to dream
• For ASEAPS to spearhead advancement of
palliative and end-of-life care
– Establish a consensus
• Appropriate norms, standards and quality indicators
• Respectful of different cultural, religious, and political
traditions
– Increased collaboration between countries
• To strengthen supportive and palliative care standards
• To develop national strategies for palliative and end-of-life
care
• To identify innovative solutions to meet the ASEAN’s
palliative and end-of-life needs.
– Improve access to palliative care medications
• Procurement and distribution
• Storage and dispensing
– Work with policy makers
• To recognize that palliative care is a human right
• To help them to understand the importance of supportive
and palliative care
• To encourage investment in these services
• To create policies that will advance the integration of
palliative care into national health services
– Work together to develop the palliative care specialty
• Integrate palliative care concepts into health care curricula
and training
• Multidisciplinary Palliative Care Fellowship with curricula
and requirements based on national/international standards
– Generalist palliative care
– Palliative Care Medical Specialty
• Development of interdisciplinary palliative care teams
A dream you dream alone is only a dream
A dream you dream together is reality
John Lennon
Palliative Care Development
ASEAN Region
• Pain and palliative care programs form one entity
• Variation in access to palliative care across the
region
• Differences in the political systems, economic and
social development
• Wide variations in the development of health-care
systems and the funding mechanisms
• Singapore is the only SE Asia country with organized
palliative care services