Developing an all-Ireland Institute for Hospice and Palliative Care:

recapping the vision and progress to date

David Clark, PhDVisiting Professor of Hospice Studies

Trinity College Dublin/University College Dublinand

Professor of Medical SociologyLancaster University

• Hospice care has a long history in Ireland, going back to Cork and Dublin in

the

late 19th century• Since 1987/95, specialty recognition for palliative medicine has been a growth

point for hospice and palliative care development• Growing interest in framing end of life care as a public health issue• Around the world ‘the field’ of palliative care remains patchily developed, with

huge discrepancies in resources and provision across regions and countries• Some problems around terminology, service definitions and characterising

the patient population• But global interest in palliative care development has never been greater

The state of development of hospice and palliative care

Wright et al Journal of Pain and Symptom Management, 2008

World map of palliative care development

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RAKING COUNTRY RESOURCES INDEXResources in

relation with UK VITALITY INDEXVitality in relation

with UK EAPC INDEX

   total points  (max 

135) max 75%total points (max 

10) max 25%(75% resources + 

25% vitality)

11 UNITED KINGDOM 124 75 10 25 100

22 IRELANDIRELAND 111 67 7 18 8533 SWEDENSWEDEN 114 69 6 15 84

44 NETHERLANDSNETHERLANDS 105 64 7 18 81

55 POLANDPOLAND 102 62 6 15 77

66 FRANCEFRANCE 93 56 7 18 74

77 SPAINSPAIN 97 59 6 15 74

88 GERMANYGERMANY 74 45 10 25 70

99 BELGIUMBELGIUM 93 56 5 13 69

1010 LUXEMBURGLUXEMBURG 100 60 3 8 68

1111 AUSTRIAAUSTRIA 99 60 3 8 67

1212 ITALYITALY 90 55 5 13 67

1313 DENMARKDENMARK 72 44 5 13 56

1414 FINLANDFINLAND 73 44 4 10 54

1515 LATVIALATVIA 74 45 3 8 52

1616 LITHUANIALITHUANIA 67 41 2 5 46

1717 HUNGARYHUNGARY 65 39 2 5 44

1818 BULGARIABULGARIA 65 39 2 5 44

1919 CZECH REPUBLICCZECH REPUBLIC 56 34 4 10 44

2020 SLOVENIASLOVENIA 59 36 3 8 43

2121 CYPRUSCYPRUS 60 36 2 5 41

2222 ROMANIAROMANIA 41 25 6 15 40

2323 MALTAMALTA 42 25 5 13 38

2424 GREECEGREECE 45 27 4 10 37

2525 PORTUGALPORTUGAL 37 22 3 8 302626 SLOVAKIA.SLOVAKIA. 32 19 3 8 27

2727 ESTONIAESTONIA 10 6 1 3 8

Marino et al 2008

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1987 United Kingdom

1995 Ireland

1998 Hong Kong

1999 Poland

2000 Romania

2001 New Zealand

2005 Latvia

2005 Australia

2005 Czech Rep

Countries with palliative medicine as a specialty/ subspecialtyN=18

2005 Czech Republic

2005 Malaysia

2005 Slovakia

2006 Germany

2006 Argentina

2006 USA

2007 Georgia

2007 Australia

NK Philippines

Palliative medicine

STRENGTHS•Policy recognition directed at palliative care improvement•Some palliative care groups linked to universities and HEIs for education and research•Small number of research projects and programmes and students registered for higher degrees by research•Rich array of professional, governmental and voluntary sector groups supporting the endeavourWEAKNESSES•No clear academic leadership in the field•Educational and research endeavours are highly localised, without co-ordination•Problems of unnecessary competition within a field that lacks capacity•Little international engagementCHALLENGE• How best to develop and sustain a health and social care system for the provision of palliative and end of life care?

Hospice and palliative care on the island of Ireland

Figure 2.1 Overview of Stakeholders

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First steps in the process (May 2006 – June 2007

Step 1

Concept Generation

May-Aug 2006

Step 4

Present Outline Proposal

June 2007

Step 3

Explore Options

March 2007

Step 2

Concept Testing

Sept 06-Feb 07

Draft discussion paper developed with concept for an Institute for Hospice and Palliative Care outlined

Engage Prospectus consulting

Paper circulated widely for consideration.

Discussions with organisations and associated individuals, north and south

Interviews with key stakeholders

Workshop to examine the potential aim, objectives and principles of the Institute

Updated concept circulated to all stakeholders

Workshop presentation of an outline proposal with the concept for an all-Ireland Institute of Hospice and Palliative Care further developed

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Next steps in the process

Step 5

Formation of steering group

August 2007

Step 8

Bidding process

Spring 09

Step 7

Funding applications

Mar-08- Mar 09

Step 6

Produce draft business caseSept 07-Feb 08

Co-chaired by Profs Muiris Fitzgerald and Judith Hill

Multi-disciplinary and intersectoral

Cross jurisdictional

Detailed five year plan, with costings

Discussions with key funders

Regular feedback and final consultation

Key application to Atlantic Philanthropies

Partnership funding from state, charitable and foundation sources

Creation of consortium of funders

To be co-ordinated by HRB/R&D office

Will seek applications from bidding teams

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Vision for the Institute

To improve the experience and understanding of palliative and end-of-life care on the island of Ireland,

by enhancing the capacity to:develop knowledge, promote learning, influence policy

and shape practice

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Objectives of the Institute

• Become a leading international centre of expertise and information on education, research, policy and practice in palliative and end-of-life care

• Advance the development of a sustainable and skilled workforce by providing a platform for collaborative educational and training programmes in palliative and end-of-life care

• Strengthen the evidence base by promoting, and increasing the capacity for, collaborative research and development in palliative and end-of-life care

• Act as a responsive and accessible resource to service providers and policymakers, seeking to shape practice and influence policy

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Principles of the Institute

1. All-Ireland basis 2. International partnerships contributing global improvement3. Engagement with service providers, educators and researchers 4. Strategic leadership for education and research in palliative and

end-of-life care5. Adding value to existing activities6. Enabling further capability in palliative and end-of-life care

services, education and research7. Collaborative, inclusive approach 8. Promote inter-disciplinary and inter-professional collaboration9. Values reflect those of palliative and end-of-life care10. Promote the involvement of service users, carers and advocacy

groups

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Education and Training

• Identify the evolving education and training needs

• Drive the strategic development of palliative care education

• Promote studies and collate existing evidence on effectiveness of offerings

• Develop and maintain a database of education and training programmes

• Promote & facilitate the involvement of service users in education & training • Host regular meetings/symposia to promote innovation in education and training

• Support existing education providers to ensure highest standards of delivery

• Work with educational partners to develop standardised core curricula

• Contribute to international discussions on curricula development

• Assess need for wider public education initiatives on end of life care

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Research

• Develop strategic plan for research in palliative and end-of-life care

• Secure an increasing level of funding

• Identify gaps and promote new research programmes

• Commission some programmes of research in palliative and end-of-life care

• Develop and maintain a database of

• Improve quality and outcomes in research

• Support population-based and multi-centre research projects

• Enable Irish participation in international research projects/funding streams

• Enhance research capacity through mentoring, training, career development

• Support academic institutions and service providers in making applications

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Resource to service providers and policymakers

• Contribute to evidenced based policy and practice debates

• Leverage new funding for education and research in palliative

• Inform the debate on workforce planning by compiling relevant evidence

• Organise networking events to exchange information and best practice

• Deliver targeted communications/fact sheets to key stakeholders

• Develop and maintain a website covering all of the Institute’s activities

• Compile and disseminate information in relation to best practice

• Facilitate inter-sectoral and inter-disciplinary collaboration

• Organise international exchanges to view models of excellence/share ideas

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Proposed governance and staffing

• The Institute will be a “centre” within a host organisation (university, hospice, other organisation)

• The Institute will have a limited lifespan, for the purpose of building capacity – with appropriate evaluation and review

• Funding to establish and support the Institute will be awarded to a host organisation on the basis of a competitive bidding process

• An Oversight Committee will be established by the Institute of Public Health to provide ongoing advice, monitor progress and to oversee evaluation

• A Consortium of Funders will meet annually, receive reports and review progress

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Outcomes of the Institute

1. Institute established and functioning effectively

2. Measureable increase in research capacity, collaboration, activity

3. Evidence of improved co-ordination, accessibility and uptake of

education programmes

4. Evidence of beneficial impact on the delivery of palliative and end-

of-life care services 5. Evidence of increased participation of service users, carers and advocacy groups in the design and evaluation of palliative care services, research and education/training programmes 6. Evidence of increased public awareness of palliative and end of life care issues

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‘Legacy’ of the Institute

• The public profile of hospice and palliative care will be enhanced with

recognition of the field as a key part of the public health system. • Strong leadership in hospice and palliative care research, education and

service provision across the island of Ireland• Service provision, research and education will be evidence-based to meet

evolving needs• Stronger collaboration between service providers, educators and

researchers• The island of Ireland will be positioned as an international leader in

research, education and service provision within the field of hospice and

palliative care• The Institute will have inspired similar approaches and models elsewhere• Enhanced experience for patients and families requiring end of life care

across the island of Ireland  

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Key features

• All-Ireland

• Public-private

• Multi-disciplinary

• Inter-sectoral

• Multi-focal: research-education-policy/practice