barriers to end of life care in the gambia : h ow can we reduce unnecessary suffering?

Yuki Takao

IGHI Student Challenges Competition 2013 – 27th November

Supervisor: Prof. Mark Thursz

BARRIERS TO END OF LIFE CARE IN THE GAMBIA:How can we reduce unnecessary suffering?

Presentation Overview

Background My BSc project with PROLIFICA Objectives Results Future aims and further research

Background:Palliative Care in the African Setting

What is “end of life/palliative care”?

Largely neglected in Africa, lack of research…

…less than 5% of Africans in need are benefiting from palliative care (Grant et al; 2011)

The rising cancer burden Half a million deaths/year (Sepulveda et al; 2003 )

Over the next 50yrs, cancer rates are expected to grow by 400% (Morris K; 2003)

PROLIFICA

PROLIFICA: Prevention of Liver Fibrosis and Cancer in Africa- Hepatocellular Carcinoma Case-Control (HC4) study

Are patients receiving end of life care in The Gambia?

Survival and Pain:Unnecessary suffering

Hepatocellular Carcinoma Case-Control Study (n=113)- Half the HCC patients dead by 3months- Median pain score for HCC patients: 4 (very severe pain)- No one had been prescribed oral morphine

Barriers to End of Life Care…

1) Opioid regulations and accessibility

2) Availability of essential drugs

3) Knowledge of healthcare professionals

Barrier One:Opioid Regulations

Palliative Care Resources

One palliative care institute

Gambian National Policies- Import/Export License, renewed annually- Signature from the Ministry of Health- Central Medical Store distributes drugs once a year

Barrier Two:Essential Drug Availability

GENERAL HOSPITAL, BANJUL

MEDICAL RESEARCH COUNCIL

PALLIATIVE CARE NGO

Barrier Two:Essential Drug Availability

349 total healthcare workers269 total responsesOverall Response Rate 77%

Barrier Three:Knowledge of Healthcare Professionals

Barrier Three:Knowledge of Healthcare Professionals

Palliative Care Quiz for Nursing (PCQN)

“Long-term use of opioids (morphine) can often induce addiction” 15 (6%) gave the correct answer “false”

Factors associated with lower scores:- Less clinical experience- Lower number of terminal patients ever cared for- Lack of palliative care education

EDUCATION & TRAINING

Discussion: To achieve effective end of life care…

- Implementation of national policies that promote palliative care and pain treatment

- Improved supply and distribution system for essential medicines

- Education and training for healthcare workers, with emphasis on eradicating the negative perception towards opioid analgesics

What we achieved…1) Perspective on end of life care in

West Africa2) Identified major issues3) Raised awareness4) Provided pain relief

Discussion: To achieve effective end of life care…

- Implementation of national policies that promote palliative care and pain treatment

- Improved supply and distribution system for essential medicines

- Education and training for healthcare workers, with emphasis on eradicating the negative perception towards opioid analgesics

Further research…Palliative Care Workshop

Objective: Will palliative care education and training improve the knowledge of healthcare professionals and consequently reduce the suffering of terminal cancer patients?

Rationale: Palliative care training associated with better knowledge

…How will this be implemented?

①High feasibility②Sustainability③Raising awareness④ Identify further issues⑤Cost effective

Further research…Palliative Care Workshop

Workshop on End of Life/Palliative Care- Principles of palliative care- Pain and symptom management- Multi-disciplinary team approach to care- Cultural and spiritual issues- Grief and bereavement- Support for family and caregivers

Pre- and post-workshop test of palliative care knowledge- PCKT- PCQN

Pre- and post-workshop evaluation of patient QOL- APCA African Palliative Outcome Scale

Further research…Palliative Care Workshop

Day 1Organisation- Introduction

- Materials- Consent

Days 2-5QOL Data Collection

2 sitesField workers

Days 6-7Workshop

1 sitePre and post knowledge

test

Week One

Further research…Palliative Care Workshop

Day 1Organisation- Introduction

- Materials- Consent

Days 2-5QOL Data Collection

2 sitesField workers

Days 6-7Workshop

1 sitePre and post knowledge

test

Day 1Organisation

- Re-cap- Materials

Days 2-6QOL Data Collection

2 sitesField workers

Day 7Finish studyWeek Two

Acknowledgements

Dr. Maud Lemoine

Dr. Yusuke Shimakawa

Dr. Gibril Ndow

Dr. Saihou Sabally

Mr. Saydiba Tamba

Mr. Famara Bojang

Mr. Alagie SannehMr. Lamin Giana

Mr. Yusupha Bah

Prof Simon Taylor-Robinson

Prof Mark Thursz THANK YOU

Breakdown of Costs

African Palliative Care Association (APCA) Palliative care training & workshops

Hands On Care – Dr Saihou Sabally Myself – palliative care training in Japan

Flights £500 Accommodation £500 Local Transportation £500 Field workers £750 Consumables £250

£2500 x 2 weeks= Total £5000