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Health system strengthening
in palliative care
Dr Mhoira EF Leng
Global Health Academy, University of Edinburgh
Palliative Care Unit Makerere University, Kampala
Cairdeas Palliative Care Trust, Scotland
WHO Executive Board
■Resolution
■to develop, strengthen and implement, whereappropriate, palliative care policies to supportthe comprehensive strengthening of healthsystems to integrate evidence-based, cost-effective and equitable palliative careservices in the continuum of care, across alllevels, with emphasis on primary care,community and home-based care, anduniversal coverage schemes
January 2014
Health system strengthening
■ working health system improves health.
■providing equitable access to people-centred
care where they need it
■improving the health status of individuals, families
and communities
■defending the population against what threatens
its health
■protecting people against the financial
consequences of ill-health
Palliative care; an opportunity
Professional practise
doing
experience
knowledge
feelings
expectations
assumptions
attitudes
beliefs
valuesD Fish and C Coles 1998
Leng M. Changing value, challenging practice; IJPC Jan 2011
Palliative care; an opportunity
■Values based learning
■principles that drive behaviour
■affect our attitudes
■influence our behaviour
■become frameworks for living
■culture, parents, peers, faith...
■transformational learning
■exploring, discovering, re-enforcing,
challenging values
Servicios de CP
en
Latinoamérica
Atlas cartográfico, ALCP (2012)
El 46% de los
servicios de CP de la región
asisten al 10% de la población.
Colombia
Vignette; public health approach
Mongolia
■ foundation measures for a national palliative care
program
■ generic cost-effective opioids
■ prescription regulations
■ education incorporated into the undergraduate curricula of doctors,
nurses, and social workers
■ training of specialists
J Pain Symptom Manage 2007 May;33(5): 568-73
Vignette; community PC
Uganda; Kitovu Mobile
• integration with HIV services
Grant L, Brown J, Leng M, Bettega N & Murray SA BMC Palliative
Care 2011, 10:8.
„Who will feed my
family when I am
ill and can‟t work‟
Vignettes; FBO
Malawi; Chipini hospital
• rural community programme
• integrated herbal medicine
• nutrition support
• volunteers
Vignettes; community participation
Kerala; NNPC
■Neighborhood networks in
palliative care
■1000‟s trained volunteers
■primary and community care
Kumar SK. J Pain Symptom Manage. 2007; 33 (5): 623-
627
Vignette; mobile hospice
Uganda; Mobile Hospice Mbarara
■ taking the „hospice‟ to the patient
http://www.peh-med.com/content/5/1/10
Vignette; nurse prescribing
Uganda
• government policy and regulation
change
• 110 nurse prescribers
• scale up
Merriman A, Harding R. Philosophy, Ethics, Humanities
in Medicine (2010) 5:10
Vignettes; rural hospital
India; HBM hospital, EHA
■ faith based partnerships
■community outreach
„my heart has
become less
heavy, I feel at
peace, my pain
is less
Vignettes; FBO
• Tearfund programmes in Tanzania
■“The PC team gives me hope. They
give social, psychological and spiritual
support. They pray with me. They
give me medication if I have other
illnesses. Sometimes they just come
and talk to me.‟(patient)
Vignettes; cancer hospital PC
Sudan; RICK Khartoum
■consultation service
■ IP / OP/ home care
■?? all patients have palliative
care needs
Ahmed is 20
metastatic osteosarcoma
from north Darfur
pressure sores and breathless
Vignette; training centres
Uganda; HAU / Makerere
• BSc distance learning in palliative care
„This has changed my life from today‟
Palliative Care in Makerere/MulagoMakerere Palliative Care Unit
■established in 2008 in department of medicine
■„We aim to operate a centre of excellence which
improves access to quality, evidence-based
palliative care for patients and families in need‟
Evidenced based palliative care
Health systems integration
■How to integrate palliative care within a
government and academic institution?
■How to foster and support a culture of evidence
based practice?
■How to improve access to quality palliative care?
■How to influence the values of a health system
to recognise, own and deliver palliative
care….and the health systems itself?
MPCU model; ensuring quality
Research agenda
■support, develop, deliver and evaluate palliative
care in a hospital setting and ensure its
integration into the community
■3 main strands;
■1. Patient needs and perspectives
■2. Staff needs and perspectives
■3. Frameworks and models of care
1: Patient needs and perspectives
MPCU needs assessment
■point prevalence study
■baseline for advocacy and planning
■267 notes reviewed
■122 (45%) life-limiting illness
■HIV/AIDS 73, cancer 21, renal failure
11, heart failure 8
■3% known to PC service
■78 interviews
1: Patient needs and perspectives
■Information needs and
sources of women
with cancer of the
cervix
■„When you finish your
radiotherapy do your
sexual feelings
return...will it destroy
my marriage‟
Abstract presented AORTIC, PCAU,
APCA 2013
2: Staff needs and perspectives
■Attitudes and beliefs about
morphine among health care staff
■“…the users tend to be physically
and psychologically dependent, so
they think they need the
substance…. I haven‟t seen it but
it is something I have read about,
it is well documented in motion
pictures and is widely publicized”
■Prescribing audit
Abstracts presented APM 2012, IAPC 2014
2: Staff needs and perspectives
■Curriculum integration
■“It (clinical attachment) has made a
very big impact. My practice has
changed, not only in Palliative Care,
even the other illnesses. There‟s
more to caring for the person than
just that (the disease). It feels more
satisfying.” Postgraduate internal medicine
Abstracts presented IAPC 2011, 2014
2: Staff needs and perspectives
■Experience of doctors in Mulago
in breaking bad news
■“it is not easy for the doctor and the
patient.....doctors suffer significant
stress when faced with the task of
breaking bad news”
■“when you have the skills it takes
away the fear”
Abstract presented AORTIC 2013
2: Staff needs and perspectives
■Training, mentorship and building capacity
for research
■workshops
■support delivery of BSc module introduction to research 2010-2014
■Advanced Research school Nov 12th to 23rd
2012
3. Frameworks for care
■Link nurse programme
■27 trained and given on going mentorship
■use of clinical protocols and modeling
■integrating and supporting palliative care skills
■evaluation includes activity, training impact,
competencies achieved, improvement in patient
outcomes
Abstracts on model and evaluation 2011-2014
3. Frameworks for care
MPCU model
■Patient categorised based on severity of needs (1-4)
Abstracts APCA, AORTIC, IAPC 2013-14
3. Frameworks for care
■11 clinical guidelines■Pain, children‟s pain, nausea
and vomiting, fungating
wounds, mouth care, spinal
cord compression, confusion,
constipation, breathlessness,
end of life care general
measure, end of life care
symptom control
■Essential medicines list
■Share with partners and now
with MOH for approvalPrize winning abstract PCN 2014
3. Frameworks for care
■Volunteer program
■social and pastoral care
coordinator
■social support, spiritual
support, access to food,
collecting drugs,
movement for
investigations and
physical exercise.
■narrative research Abstract PCAU, APCA and IAPC 2013-14
3. Frameworks for care
Strengthening and integrating palliative care into
national health systems through a public health
primary care approach in 4 African countries to
contribute to meeting the targets of MDG goal 6
3. Frameworks for care
Goal
■integrated palliative care■ Into systems
■ Into policies
■ Into practice
■ Into communities
which will enable better, earlier palliative care services available to more patients in a timely and effective manner
Health system strengthening
■ “Excellence is not a skill it is an attitude. I had a
negative attitude towards palliative care thinking it
was care for the dying patients only. But after
training I developed a positive attitude because
palliative care improves the quality of life of patients
and their families.”
■As a link nurse I have come to know that patients
are individuals with different problems, so I handle
them at the individual level. Also the concept of
team work has made me get very close to the
palliative care team so we work hand in hand.
Patients have become ours not theirs
■ „This is not their work…this is our work…..‟
Teamwork
‘Si quieres viajar
rápidamente, ve solo.
Pero si quieres llegar
lejos, debes ir con
alguien.’
‘If you want to travel fast travel alone; if you want to travel far travel together’
Last thoughts
• Without vision the people perish……
Resources
• International Association for
Hospice and Palliative Care
• international network
• member access to CINAHL
• traveling fellowships and scholarships
www.hospicecare.co
m
Resources
• International Observatory for End of Life Care
http://www.eolc-
observatory.net
Resources
■World Palliative Care Alliance
■Hospice Information Serviceshttp://www.thewpca.org/
http://www.helpthehospices.org.
uk/hospiceinformation/
Resources
■Palliative Care Toolkit and
Training Manual
Resources
■Life before Death
■ feature length film
■ 40 short films
http://www.lifebeforedeath.co
m/movie/short-films.shtml
Colombia
Colombia
Colombia