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