Comparing the effectiveness of palliative care for elderly people in long term care facilities in Europe

Final Report Summary - PACE (Comparing the effectiveness of palliative care for elderly people in long term care facilities in Europe)

Executive Summary:
PACE "Palliative Care for Older people" is a European funded project (FP7, 2014-2019) comparing the effectiveness of palliative care for elderly people in care or nursing homes in Europe and aims to advise policy-makers on optimal palliative care practices. The PACE consortium consisting of 9 research institutes, spanning 7 European countries, and 4 European organizations responsible for impact and dissemination, has performed three studies between 2014 and 2019.

Firstly, PACE mapped and classified palliative care systems in long-term care facilities or LTCFs (such as care or nursing homes) and published the report ‘Mapping palliative care systems in long term care facilities (LTCFs) in Europe’ in 2017 describing all types of LTCFs and the development of palliative care in LTCFs in 29 different countries.

Secondly, the consortium performed a large-scale representative cross-sectional study (study I) to examine quality of dying and palliative care in LTCFs in different EU countries in 2015. PACE evaluated the end-of-life care provided to 1707 deceased residents of 322 LTCFs in Belgium, the Netherlands, England, Finland, Poland and Italy, by asking care staff and relatives of the identified residents to fill in structured questionnaires. Additionally, all the nurses and care assistants of the same facilities were asked to fill in a questionnaire evaluating their knowledge and attitudes regarding palliative care. In total, 2275 staff members participated. The results of study I are being published in peer reviewed international journals focusing on country differences in quality of dying of residents, quality of end-of-life care, staff knowledge and attitudes regarding palliative care and well as the technical efficiency in palliative care delivery.

Subsequently, PACE prepared and conducted a controlled cluster trial in 2016-17 across 7 countries (Belgium, the Netherlands, England, Finland, Poland, Italy, and Switzerland) to study the impact of the 'PACE Steps to Success' intervention programme (study II), which aimed to integrate palliative care in day-to-day routines to ensure behavioural sustainability in LTCFs.
The analyses of the PACE trial are ongoing and effectiveness and cost-effectiveness results will be published in open access in peer reviewed international journals. The protocol of the study has been published in 2018. The PACE Steps to Success Programme has been adapted based on the evaluations, translated into five European languages and became publicly available via the PACE and EAPC websites. Additionally as a post-final stage of PACE, a MOOC (Massive Open Online Course) will be launched on April 1st 2019 aiming to raise awareness, dissemination level and impact of the PACE Steps to Success Programme.

Lastly, an extensive communication and the feedback from the multiple stakeholder events, helped PACE partners to identify the priorities and key areas of concern in the field of palliative care for older people. As a result, by the end of the project PACE consortium finalized the Policy Recommendations, which became one of the main outcomes of the project. Subsequently a Policy Event has been organized to present the Policy Recommendations to its target audience for further dissemination.

The PACE consortium hopes that PACE results will be used to further optimize the delivery of palliative care to all elderly EU citizens in the future. It calls upon European and national policy makers, service providers and researchers to prioritise, consider and address the issues outlined in the main outcomes of PACE to improve the access of older people to quality palliative care.

Project Context and Objectives:
Background/Context
As the population in the EU is aging, there is a need not only to improve people’s health through prevention but also to improve their quality of life and enable them to live and die well. The proportion of the world’s population aged 60 or over is expected to continue to rise considerably in the next years and more people will die in very old age following a slow deterioration of health until death characterized by multiple chronic diseases and years of disability and complex palliative care needs. These developments have enormous clinical, societal and socio-economic implications for all EU countries, and this has been recognized in the European Innovation Partnership on Active and Healthy Aging.
Whilst many countries aim to enable older people to live in their own homes, many older people require long-term institutional care at the end of life. A significant proportion dies in nursing homes or other long-term care facilities. Although the challenges of rising institutional care are not new, palliative care has only recently started to be implemented in long term care facilities, and there is hardly any research on its effectiveness. Existing research is typically descriptive and conducted in small groups of participants, and therefore lacks the necessary quality to contribute to evidence-based medicine and to inform practice and policy-making.
Palliative care is defined by the WHO as a multidisciplinary approach that improves the quality of life of patients and their families facing life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual/existential. While palliative care was offered mainly to cancer patients in the past, today there is growing recognition among clinicians and policy-makers that older people with age-related, chronic and mental health problems can also benefit from a palliative care approach that is integrated early in the course of disease.

The overall PACE objectives have been:
• To map and classify existing palliative care systems in long term care facilities in terms of structures, organizations and policies for palliative care, to collect country data via country representatives from all parts of Europe using a survey and documentary analyses (WP1).
• To compare effectiveness of health care systems with and without formal palliative care structures in long term care facilities in six EU countries (BE, UK, IT, FI, PL, NL) in terms of patient and family outcomes – quality of dying, quality of life– quality of palliative care, and cost-effectiveness, and in terms of staff knowledge, practices and attitudes (WP2-WP5), to perform a representative cross-sectional study of deaths (STUDY I) in 48 long term care facilities in each country, identifying at least 1,152 deceased residents across countries.
• To compare the impact of a health service intervention ‘Pace Steps to Success’ – aimed to improve the quality of palliative care in long term care facilities – with traditional care (as control) in long term care facilities in Europe, on patient, family and staff outcomes (WP3-WP4) and on cost-effectiveness (WP5), to perform a controlled cluster trial (STUDY II), randomly allocating four long term care facilities (selected from study I) to intervention and four to control in each of the six countries. PACE to evaluate the implementation process and measure the impact of the intervention after a 12-month trial period, on an estimated number of 240 deceased residents across countries.
• To consider differences between population groups, and based on results of study I and study II, to investigate the effects of gender, age, socio-economic status, dementia and functional status across health care systems, and identify what type of care works best for which patient group (WP6)
• To assist policy and decision-makers at national and international level in making informed and evidence-based decisions regarding best palliative care practices in long term care facilities (WP8), to develop products/tools for policy and decision-makers based on the study results, ultimately aiming to optimize the delivery of healthcare to the large proportion of EU citizens living and dying in old age.

Project Results:
For work package 1 (WP1), PACE in collaboration with the European Association of Palliative Care (Taskforce on long term care facilities) published the report ‘Mapping palliative care systems in long term care facilities (LTCFs) in Europe’ in 2017 describing all types of LTCFs and the development of palliative care in LTCFs in 29 different countries.
The resulting publication “Palliative Care Development in European Care Homes and Nursing Homes: Application of a Typology of Implementation” (Froggatt K, Payne S, Morbey H, et al. Palliative Care Development in European Care Homes and Nursing Homes: Application of a Typology of Implementation. J Am Med Dir Assoc. 2017 Jun 1;18(6):550.e7-550.e14) shows that there are important challenges in ensuring that national policies, funding, regulatory and quality assurance frameworks specifically address palliative care for older people in LTCFs, accompanied by appropriate implementation measures to make sure staff are sufficiently equipped to tackle those challenges.

For WP 2, we performed a cross-sectional study in 2015 of deceased residents and of staff (care assistants, nurses) working in LTCFs in 6 EU countries.
• To obtain representative nationwide samples we performed a cross-sectional study of deaths of residents in long-term care facilities in BE, UK, IT, FI, PL and NL using proportional stratified random sampling.
• Across the six countries, 322 participating facilities retrospectively reported all deaths of residents in and outside the facilities over a three-month period in 2015. For each case, structured after-death questionnaires were sent to the administrator/director, staff member most involved in care, treating physician (GP or nursing home physician) and a relative. All questionnaires were developed in English and translated to Dutch, Finnish, Polish, and Italian.
• A total number of 1707 deceased residents were identified across the 322 facilities. Response rates to the questionnaires across countries were: for facility manager/administrators 95.7%, for nursing staff 81.6% and for treating physicians 68.3%.
• To obtain a representative result of staff knowledge and attitudes regarding palliative care, a cross-sectional study of staff was conducted in the same facilities. In total, 2275 staff members participated.
• In study I costs and cost-effectiveness measurements are included (WP5) and the first results have been published in PLoS One (Wichmann et al. a
PLoS One. 2018 Sep 25;13(9):e0204120. )
• The analyses for study I have been performed following data analysis plans. The results have been published in peer reviewed international journals focusing on country differences in quality of dying of residents, quality of end-of-life care, staff knowledge and attitudes regarding palliative care and well as the technical efficiency in palliative care delivery.
• The following study I papers have already been published:
1) Tanghe M, Van Den Noortgate N, Pivodic L, Deliens L, Onwuteaka-Philipsen B, Szczerbinska K, Finne-Soveri H, Collingridge-Moore D, Gambassi G, Van den Block L, Piers R; PACE. Opioid, antipsychotic and hypnotic use in end of life in long-term care facilities in six European countries: results of PACE. Eur J Public Health. 2019 Feb 1;29(1):74-79.
2) Ten Koppel M, Onwuteaka-Philipsen BD, van der Steen JT, Kylänen M, Van den Block L, Smets T, Deliens L, Gambassi G, Collingridge Moore D, Szczerbińska K, Pasman HRW; PACE. Care staff’s self-efficacy regarding end-of-life communication in the long-term care setting: Results of the PACE cross-sectional study in six European countries. Int J Nurs Stud. 2019 Jan 30;92:135-143. doi: 10.1016/j.ijnurstu.2018.09.019.
3) Evenblij K,ten Koppel M, Smets T, Widdershoven GAM, Onwuteaka-Philipsen BD, Pasman RW. Is care staff equipped for end-of-life communication? A cross-sectional study in mental health facilities, nursing homes and care homes to identify determinants of self-efficacy. BMC Palliat Care. 2019 Jan 8;18(1):1
4) Wichmann AB, Adang MME, Visser CPK, Szczerbinska K, Kylänen M, Payne S, Gambassi G, Onwuteaka-Philipsen BD, Smets T, Van den Block L, Deliens L, Vernooij-Dassen MJJF, Engels Y. Technical-efficiency analysis of end-of-life care in long-term care facilities within Europe: a cross-sectional study of deceased residents in 6 EU countries (PACE). PLoS One. 2018 Sep 25;13(9):e0204120.
5) Oosterveld-Vlug MG, Pasman HRW, ten Koppel M, van Hout HPJ, van der Steen JT, Collingridge Moore D, Deliens L, Gambassi G, Kylänen M, Smets T, Szczerbińsk K, Van den Block L, Onwuteaka-Philipsen BD; on behalf of PACE. Physician visits and recognition of residents' terminal phase in long-term care facilities: findings from the PACE cross-sectional study in 6 EU countries. J Am Med Dir Assoc. 2018 Oct 23. pii: S1525-8610(18)30471-7.
6) Pivodic L, Smets T, Deliens L, Van Den Noortgate N, Onwuteaka-Philipsen BDn Engels Y, Szczerbińska, H Finne-Soveri, K Froggatt, G Gambassi, L Van den Block. Quality of dying and quality of end-of-life care of nursing home residents in six countries: results of the European PACE study. Palliat Med. 2018 Dec;32(10):1584-1595.
7) Smets T, Pivodic L, Piers R, Pasman HRW, Engels Y, Szczerbińska K, Kylänen M, Gambassi G, Payne S, Deliens L, Van den Block L. The palliative care knowledge of nursing home staff: The EU FP7 PACE cross-sectional survey in 322 nursing homes in six European countries. Palliat Med. 2018 Oct;32(9):1487-1497.
For WP 3 (standardisation and translation of the health service intervention ‘PACE Steps Success’ in LTCFs) we prepared the ‘PACE Steps to Success’ intervention and accompanying materials for use in six EU countries and Switzerland (which takes part in the PACE trial with own funding). This intervention aims to integrate palliative care in day-to-day routines to ensure behavioural sustainability. The lead international trainer (UK) trained 16 trainers from 7 countries (BE, UK, IT, FI, PL, NL, CH) in 2015 (own funding for CH). Country trainers were responsible for the implementation of the PACE intervention in participating facilities in each country. A controlled cluster trial to evaluate “PACE Steps to Success” (WP4 – study II) was performed (2015 to 2017) in these 7 countries. Across countries, 78 facilities were randomised to either intervention or control. At baseline, all deaths over the previous four months were registered and questionnaires were sent to the administrator/ director, staff member most involved in care, treating GP and a relative. The intervention was implemented during the following 12 months after which the same quantitative measurements were performed for outcome and cost evaluation at month 13 and month 17 in each facility. Process evaluation included quantitative and qualitative measurements throughout and after implementation of the intervention following the RE-AIM framework for the evaluation of implementation of complex interventions. The analyses of the PACE trial are ongoing and effectiveness (WP4) and cost-effectiveness (WP5) results will be published in peer reviewed international journals. The protocol of the study has been published in 2018. The results will be published in open access journals and uploaded to the websites (PACE, EAPC).
The PACE Steps to Success Programme has been adapted based on the evaluations, translated into five European languages and became publicly available via the project and EAPC websites: 1) http://www.eupace.eu/publication/pace-steps-success-programme-information-packs-and-tools-original-and-translated; 2) https://www.eapcnet.eu/research/european-union-funded-projects/pace.

Potential Impact:
Expected results
PACE has considerably advanced research in this field by providing high-quality evidence concerning the effectiveness of palliative care. The obtained evidence concerns not only quality of dying and quality of end-of-life care but also cost-effectiveness. PACE is providing important cross-country evidence to inform innovative research in this domain in Europe and beyond.

PACE is also advancing the field of long-term care practice: large scale population-based databases constructed in the PACE countries are providing important opportunities for national and international health care agencies to benchmark their own performance. PACE is helping to introduce a palliative care approach into long-term care facilities, which is a very new and challenging endeavor. Palliative care is still generally being perceived as ‘terminal care’ or care for people in the final days/weeks of life. However, as the WHO definition indicates, palliative care is applicable early in the course of disease when potentially life-prolonging treatments are still available. Even though not all residents of long-term care facilities are terminally ill, such facilities and their patients can benefit from a palliative care approach or “culture” and from screening residents for palliative care needs in a systematic manner.

PACE also aims to assist policy and decision-makers in long term care. The comparisons of the performance – in terms of quality as well as costs – of long-term care settings in the EU will assist them in making evidence-informed decisions about palliative care implementation in the facilities in their countries. The unique consortium of PACE which brought together partners with expertise in research, practice and policy at national and EU levels made it possible to inform policy and decision-makers in adequate and effective ways.

Potential applications
PACE aimed to inform and assist policy and decision-makers at different national and European levels and has developed specific tools and products to assist them in making evidence-informed decisions on optimal palliative care delivery in LTCFs. The project results have been translated into general dissemination tools (website, newsletters, publications, conferences, trainings etc.) and policy recommendations that target different groups – policy, practice, the academic community, and the general public – at different levels – internationally, nationally, regionally and locally. PACE also developed a standardized train-the-trainer package of the ‘PACE Steps to Success’ intervention to improve the quality of palliative care in LTCFs. The training materials have been translated, disseminated and made freely available for other EU countries, which creates opportunities for establishing a standardized palliative care approach in European LTCFs.

The final events

Together with the Project Coordinator (VUB), the dissemination partners (EAPC, Age
Platform and Alzheimer Europe) PACE have organized and successfully run the final events of the project: 1) PACE Final Conference on the 25th May 2018 in Bern, Switzerland; 2) PACE Policy Workshop on the 24th January 2019 in Brussels, Belgium.

1) PACE Final Conference, 25/05/2018
The main PACE conference of the reporting period three and the project in general
took place on Friday 25th May 2018 in Bern, Switzerland as part of the EAPC World
Research Congress. This seminar aimed to:
a) Explore state-of-the-art palliative care for older people in a range of settings
b) Bring together the PACE consortium with international experts to discuss global
best practices
c) Set priorities for further development of palliative care for older people.
The seminar aimed to target the delegates attending the EAPC RN World Research
Congress; Swiss healthcare professionals and care worker in long term care settings
for older people; Any healthcare worker with an interest in palliative care for older
people in clinical and social settings. More than 70 people from all over the world
(similar to the PACE Pre-congress seminar – see below) attended the 3 hour PACE
seminar to hear a range of presentations on key findings from the PACE project. There
the main results of PACE studies (*as of May 2018) have been disseminated.
PACE conference has been widely advertised via PACE, EAPC and VUB (End-of-life care
research group) websites, as well as on sight during the EAPC World Congress - with
flyers and posters. It has also been reported on multiple Twitter accounts present in
the field of palliative care.

2) PACE Policy Workshop “Palliative care for older people: why we all need to care,
now”, 24/01/2019
As a major part of the final Period 4, PACE Consortium in general and Dissemination
Partners in particular have created one of the main final products of PACE - the Policy
Recommendations (see deliverable 8.4). The Policy Recommendations were
formulated to closely reflect the feedback from the stakeholder events that PACE was
presented at. They also include key inputs from PACE partners, as to make them selfreading
and inclusive of the evidence that PACE research partners have delivered
throughout the project. The policy recommendations were circulated for feedback
from representatives of the different groups involved in their development, which was
then incorporated into the final report.

The Policy Recommendations were presented and hard copies were distributed at the
final PACE workshop “Palliative care for older people: why we all need to care, now”,
24 January 2019 in Brussels. PACE partners decided to print them professionally for
future dissemination.
The Policy Workshop has targeted a very important audience – policy makers,
authorities and professionals from different entities and organizations directly or
indirectly related to the area of public health in general and palliative care in particular.
As a result, representatives of Age member associations, Eurocarers, Kom op Tegen
Kanker, EASPD, HOPE, EHMA, International Association for Hospice and Palliative Care,
CPME, Flemish Government, Federation Palliative Care of Flanders, ANSDIPP FVG,
European Palliative Forum and others, were introduced to the Policy
Recommendations and other outcomes of the project.
Launching of the “PACE Steps to success” information pack took place during the
workshop as well. Together with the Policy Recommendations, these two tasks of the
project are considered to be the most important part of its outcomes.
Also a MOOC (Massive Open Online Course) has been introduced to the audience of
the workshop. MOOC is planned to increase worldwide exposure in 2019 and
individual countries are launching the “PACE Steps to Success” resource pack for
nursing homes in their own languages/countries in the coming months.
This interactive workshop has allowed its participants to learn more about palliative
care for older people living in long-term care facilities. They had a chance to be
introduced to the main results of the PACE project and the intervention it has
successfully implemented to improve access, as well as the policy recommendations
and recommendations for managers of social and health care services that PACE has
developed over the past years. Hopefully, the workshop has shown the centrality of
palliative care to the wellbeing of older people and to the design of comprehensive,
quality long-term care systems.
The success of the workshop brought PACE to a new level - the
project has been invited to the UN headquarters in New York for a UN side event on Aging.
One of the leading Project Investigators of PACE, Prof. Sheila Payne from Lancaster, has
successfully presented PACE there. Additional info on this can be found in the Extra Info and
dissemination activities attachments to the periodic and final reports.

3) Other
Despite the fact that another event in Bern - the PACE&EAPC RN Pre-Congress Seminar
(23.05.2018) has been built around methodological research challenges, it had a great
impact on the dissemination of the project in general. More than 100 researchers,
healthcare professionals and experts in the field of long term care from Australia,
Belgium, Brazil, Germany, Burundi, Finland, The Netherlands, UK, Austria, Poland,
Portugal, Canada, Switzerland, Italy, Korean Republic, France, Slovenia, Moldavia,
United States of America, Thailand and Tanzania learned about the PACE project and
shared their knowledge and experience in the palliative care field of expertise.
http://www.endoflifecare.be/EAPCRN-PACEPreconferenceSeminar

Following all of the above, the PACE project has been successfully presented during
multiple important events in the field of palliative care and has organized a few of them,
where its main achievements and results have been exposed to the three main audiences:
researchers, professionals and policy makers.

List of Websites:
Website: eupace.eu
Tweeter: @fp7PACE
Coordinator: Prof. Lieve Van den Block: Lieve.Van.den.Block@vub.be
Project Manager: Yuliana Gatsolaeva: Yuliana.Gatsolaeva@vub.be

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Final Report Summary - PACE (Comparing the effectiveness of palliative care for elderly people in long term care facilities in Europe)

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