Dying Well,
Free of Pain
The Case for The Global Research
Centre for End-of-Life Care
Dying Well,
Free of Pain
The Case for The Global Research
Centre for End-of-Life Care
Foreword
End-of-Life Care helps all those with advanced, progressive, incurable illness to live as
well as possible until they die, supporting patients and their families throughout the last
phase of life and into bereavement. The clinical specialty of End-of-Life Care is still in its
infancy, with much room for improvement even in places where it has been prioritised and
highly developed.
There is also a desperate need to change attitudes toward death and dying, improve
services and resources and to allow people to live well and die in their communities with
access to pain and symptom management.
This document sets out a case for establishing The Global Research Centre for End-ofLife Care within the Institute of Global Health Innovation (IGHI) at Imperial College London.
This new Centre will consist of a policy and research hub that will harness innovation in
End-of-Life Care and will be dedicated to improving the quality of care for all dying people
across the world.
This year, more than 55 million people in the world will die. Every person deserves respect
and dignity at the end-of-life. The Global Research Centre for End-of-Life Care will seek
to achieve this goal by creating and developing partnerships that bring together the best
thought leaders and clinicians in the world to develop affordable solutions that improve
End-of-Life Care globally.
We are committed to making this a reality and would welcome your support, knowledge
and contributions.
Please feel free to contact Sir Thomas Hughes-Hallett at [email protected] or
his Assistant, Kathy Hicks at [email protected] if you require any further information.
We very much look forward to hearing from you
Sir Thomas Hughes-Hallett Executive Chairman, IGHI
Professor the Lord Darzi of Denham
Director, IGHI
‘How we care for the dying is an indicator of how we care for all sick
and vulnerable people. It is a measure of society as a whole, and it is a
litmus test for health and social care services.’
End-of-Life Care Strategy
England
End-of-Life Care must be a Human Right
In order to eliminate unnecessary suffering, Endof-Life Care must be recognised as a human right
and made available to all. Tragically, often the most
vulnerable people in need of care are overlooked,
especially children and the elderly. This must be
rectified.
Quality End-of-Life Care includes optimising the
quality of life remaining and supporting the patient,
carers and family in a coordinated way, ensuring that
the patient’s death is as painless and dignified as
possible.
Caring for the dying is a fundamental responsibility
of all societies, yet millions of people die each year
in unbearable pain with no access to essential
medicines that ease pain and suffering.
The majority of these deaths occur in low- and
middle-income countries where End-of-Life Care
is rarely high quality and is often completely
unavailable.
In high-income countries, the dying wishes of those at
the end-of-life are often unfulfilled.
‘In the past few decades, medical
science has rendered obsolete
centuries of experience, tradition and
language about our mortality, and
created a new difficulty for mankind:
how to die.’
Professor Atul Gawande
Harvard University
IGHI’s Executive Chair, Sir Thomas Hughes-Hallet speaking about End-of-Life Care at
the World Innovation Summit for Health in Doha, December 2013.
Over 4 Billion People in the
World Lack Access to Essential
Medicines at the End-of-Life
‘No one should die in the torture of pain when the drugs to stop that
pain are available and so affordable… Living pain-free – especially
but not only during our last period of life – is a right that can be met
even in the poorest of settings.’
Professor Felicia Knaul
Harvard University
The Centre Will Focus on Three
Research Themes
Innovation
•
•
•
•
•
•
•
•
Develop tools to promote conversations and awareness about End-of-Life Care, including advance
directives and technology-based solutions that coordinate care between patients, carers and healthcare
providers;
Increase awareness of the right entry point to End-of-Life Care;
Develop new analgesia and discover new biomarkers for dying;
Focus research programmes on mental health and well-being;
Improve the clinical education of frontline staff;
Harness telemedicine and technology-based innovations to support hard to reach communities;
Broaden the international workforce to include nurse prescribers, community support and general
medical staff by analysing and pooling global initiatives.
Innovation in practice - the Centre will develop and test technological and policy innovations in targetted
countries/states.
Policy
•
•
•
•
•
Develop a template for a national strategy for End-of-Life Care;
Develop guidance for ensuring the usage, security and availability of essential medicines;
Explore regulatory reform of opioid analgesic availability;
Develop a logistics package for providing pain relief where it is needed;
Create an internationally agreed series of metrics and outcomes to establish an effective end-of-life
database.
Strategy
•
•
•
•
Build a case for Palliative and End-of-Life Care as a human right for all, and ensure that the most
vulnerable are not overlooked, especially children and the elderly;
Create international research collaborations to improve the quality and availability of End-of-Life Care;
Demonstrate and alleviate the economic burden of dying for the state and families alike;
Empower patients, families and communities to engage in care and support.
The Centre Will Develop
and Policy Innovations in T
EXAMPLES:
Italy
Rationale:
•
•
•
Lags behind world leaders in Palliative and End-ofLife Care;
Hospice care is expanding;
Government recently set up national palliative care
service (2010).
Population: 60 million
Economic status: High Income
India
Rationale:
•
•
Critically low access to opioid analgesics and other
essential medicines in most of the country;
Innovative solutions have been developed in Kerala
that could be expanded to the rest of the country.
Population: 1.2 billion
Economic status: Emerging
Burma
Rationale:
•
•
Extremely low access to opioid analgesics and other
essential medicines;
Potential to rapidly improve Palliative and End-of-Life
Care after many years of neglect and military rule.
Population: 61 million
Economic status: Low income
p and Test Technological
Targetted Countries/States
United Kingdon
Rationale:
•
•
A World leader in Palliative and End-of-Life Care
development;
Need to expand local innovations into national
programmes.
Africa
Rationale:
•
•
Virtually no Palliative or End-of-Life Care in much
of the continent;
Pockets of innovation that have proven successful
could transform care across the continent if
expanded.
Latin America
Rationale:
•
•
Low access to opioid analgesics and other
essential medicines in many countries due to
widespread overregulation;
Contains some of the world’s fastest growing
economies but also some of the poorest countries
in the world.
Population: 63 million
Economic status: High Income
A Timeline for Success
Our goals for 2014/2015
•
•
•
•
•
•
Develop a template for national End-of-Life Care pathways that can be tailored to fit the needs of specific
countries and cultures;
Capitalise on the momentum of the Prague Charter to build a case for worldwide acceptance and
acknowledgement of Palliative and End-of-Life Care as a human right;
Create international research collaborations to improve the quality and availability of End-of-Life Care
Support and develop and expand technological innovations that coordinate care between patients, carers
and healthcare providers to reach larger communities;
Develop programmes to improve the clinical education of frontline staff in the UK that can be amended to
fit the needs of other countries;
Host the first annual International End-of-Life Care research conference at Imperial College London.
Our Five-Year Plan
•
•
•
•
•
•
Continue to advocate for Palliative and End-of-Life Care as a human right on a global scale;
Publish guidance for ensuring the usage, security and availability of essential medicines in specific
countries where they are unavailable or overregulated;
Publish research that determines appropriate timescales for entry to the end-of-life for specific diseases;
Publish research that demonstrates the economic burden of dying for the state and families alike;
Create an internationally agreed series of metrics and outcomes to establish an effective database about
death;
Develop and expand technological innovations that coordinate care between patients, carers and
healthcare providers to reach entire countries.
A Preliminary Budget for
the Centre for End-of-Life Care
Budget years 1-2
Staff Costs
Chair300,000
Senior Lecturer200,000
Postdoctoral Researchers and PhD Students
275,000
Support Staff400,000
Non-Staff Costs
Advisory Board20,000
Partnership Project Funding300,000
Annual Summit200,000
Surveys/Interviews/R&D/Travel/Communication/etc
315,000
Total Costs for Years 1-2£2,010,000
Budget years 3-5
Staff Costs
Chair450,000
Senior Lecturer300,000
Postdoctoral Researchers and PhD Students
800,000
Support Staff820,000
Non-Staff Costs
Advisory Board30,000
Partnership Project Funding1,275,000
Annual Summit300,000
Surveys/Interviews/R&D/Travel/Communication/etc
790,000
Total Costs for Years 3-5£4,765,000
Total Budget for 5 years £6,775,000
Potential Five-Year Funding Tracks
for the Centre for End-of-Life Care
Costs per Year / Total (£)
Visionary
Benefactor of a Chair
Senior Lectureship
Conference Sponsor
Postdoctoral Fellow Sponsor
PhD Student Sponsor
£1m / £5m
£400k / £2m
£100k / £500k
£100k / £500k
£75k / £375k
£50k / £250k
The Institute of Global Health
Innovation Will House The Centre
for End-of-Life Care
The Institute of Global Health Innovation harnesses a multidisciplinary approach to develop and
communicate new technological, process-based and business model innovations to find sustainable
solutions to the greatest global health challenges.
Imperial College London is a science-based institution with a reputation for excellence in teaching and
research that attracts 14,000 students and 6,000 staff of the highest international quality. Innovative
research at the College explores the interface between science, medicine, engineering and business,
delivering practical solutions that improve quality of life and the environment – underpinned by a dynamic
enterprise culture.
Since its foundation in 1907, Imperial’s contributions to society have included the discovery of penicillin,
the development of holography and the foundations of fibre optics. This commitment to the application
of research for the benefit of all continues today, with current focuses including interndisciplinary
collaborations to improve global health, tackle climate change, develop sustainable sources of energy
and address security challenges.
The Centre Will Improve Global
End-of-Life Care
Professor the Lord Darzi of Denham leads the Division of
Surgery at Imperial College London and is the Director of
the Institute of Global Health Innovation.
He is also an honorary consultant surgeon at Imperial
College Healthcare NHS Trust and The Royal Marsden
NHS Trust. In 2007 he was appointed Parliamentary
Under-Secretary of State at the Department of
Health. He relinquished this role in July 2009, when
he was appointed by the Prime Minister as the UK
Global Ambassador for Health and Life Sciences and
was appointed as a member of Her Majesty’s Most
Honourable Privy Council.
In 2013 he was the Executive Chair of the World
Innovation Summit for Health and was appointed to lead
the independent London Health Commission.
Sir Thomas Hughes-Hallett is the Executive Chair of the
Institute of Global Health Innovation, Imperial College
London and was recently appointed Chair of Chelsea
and Westminster Hospital NHS Foundation Trust.
Prior to this, he was Chief Executive at Marie Curie
Cancer Care for twelve years. He is currently a Trustee
of the King’s Fund and the Esmée Fairbairn Foundation
and has authored a number of independent reviews,
including The Philanthropy Review, a Review of End-ofLife Care for Adults and Children and the Who Will Care
2013 report commissioned by the Essex County Council
on health and social care strategy in Essex.
He also authored Dying Healed: Transforming Endof-Life Care Through Innovation for the 2013 World
Innovation Summit for Health.
The Institute of Global Health Innovation
(IGHI) works to improve people’s health
through innovation. By working with others
and harnessing Imperial’s expertise across
medicine, science, business and engineering,
we are able to find sustainable solutions
to the greatest global health challenges.
Get in touch
To find out more about the Centre for End-of-Life Care,
contact
Sir Thomas Hughes-Hallett • [email protected]
Dr Mark Steedman • [email protected]
For general enquiries, contact
IGHI Manager • [email protected]
For media enquiries, contact
Communications and Events Officer • [email protected]
Institute of Global Health Innovation
Imperial College London
Level 1, Faculty Building
South Kensington Campus
London SW7 2AZ
UK
@Imperial_IGHI
/ImperialIGHI
www.imperial.ac.uk/ighi