As more people are living longer and chronic diseases are more common with age, many older people are confronted with illness, disability, frailty, or other physical and mental health problems. With increasing age, people increasingly experience physical problems (e.g. problems with ADL and IADL, physical symptoms), psychological issues (depression and other mental health problems), social problems (diluted social network, limited informal care) and/or existential distress (e.g. loneliness, hopelessness). Additionally, the cumulative psychological impact of seemingly minor problems might be greater in older people then in younger adults, as might be the cumulative impact of multiple comorbid conditions and diseases. There is a well-recognized and urgent need to address the palliative care needs of older people; however, a lot of progress still needs to be made.
Objectives of the Reference Group on Aging and Palliative Care
The overall aim of the Reference Group on Ageing and Palliative is to advance our understanding of palliative care for older people, particularly those with frailty, identify key areas for improving practice, policy and research, and compiling evidence-based practices to improve palliative care for older across a variety of settings.
More specifically, this group will:
- Build an international and multidisciplinary network of researchers and clinicians engaged in the topic of Ageing and Palliative Care (WP1)
- Develop a white paper on palliative care for frail older people, defining optimal palliative care and its core components in multiple settings, prepare recommendations for professionals and policy-makers involved in providing and/or regulating palliative care for older people, and develop a research agenda for guidance for future research (WP2)
- Map existing databases and longitudinal cohort studies in the field of aging, and identify opportunities for palliative care research (WP3)
- Map inclusion of palliative care in current health care policies regarding older people in different countries and continents (WP4)
- Identify and disseminate evidence-based programmes for improving palliative care for older people in different settings (WP5)
A multidisciplinary and international network
The reference group on Ageing and Palliative Care will bring together a multidisciplinary network of researchers and professionals involved in studying and improving palliative care for older people.
Lieve Van den Block
contact group by email
- Yuliana Gatsolaeva (Belgium) – Administration
- Gert Huymans (Belgium) EAPC Board Link
- Caroline Nicholson (UK)
- Sandra Martins Pereira (Portugal) EAPC Board Link
- Lucas Morin (Sweden/France)
- Sophie Pautex (Switzerland)
- Lara Pivodic (Belgium)
- Katarzyna Szczerbińska (Poland)
- Lieve Van den Block (Belgium)
- Nele Van Den Noortgate (Belgium)
- Rose Miranda (Belgium)
- Rebecca Tiberini (UK)
- Barbara Hanratty (UK)
Reference group members
Additional reference group members will be invited to cover the most important disciplines or professionals involved in palliative care for older people, ensure geographical representation across EAPC members and non-European countries, be gender balanced as much as possible, and aim to develop capacity involving junior staff within the work packages.
The reference group builds on extensive previous collaborations including:
- EAPC Taskforce Long-term care facilities (Long Term Care Mapping (2015) and Long Term Care Settings (2012))
- EAPC-EUGMS collaboration and the EAPC and EUGMS joint manifesto ‘Quality of Life in Old Age until the End – collaboration project with EUGMS and Maruzza Foundation’ (EAPC blog post about task force)
- EU funded PACE project with products/tools included at EU Funded Palliative Care Research and on this page (see below).
These previous collaborations have been very successful and brought together several researchers and practitioners in the field of palliative care, geriatrics and other disciplines occupied with improving palliative care for older people. It is important that this work can be further consolidated and expanded via EAPC reference group on Ageing and Palliative Care.
The Ageing and Palliative Care Reference Group will be led by a core multidisciplinary and multi-country group of researchers and professionals in the field of aging and palliative care, extended with a broader Reference Group Network to be established.
Work Packages and methodologies
WP1 INTERNATIONAL AGEING AND PALLIATIVE CARE NETWORK
Task leads: Nele Van Den Noortgate and Sophie Pautex, with core group members
This reference group will consolidate the previous collaborations between the EAPC, EUGMS and IAGG-ER, and will seek broader collaborations in the field of ageing and palliative care, internationally and multidisciplinary. The overarching aim is to build capacity and collaboration between disciplines, organisations and countries.
We will sign a Memorandum of Understanding between EUGMS, IAGG-ER and EAPC, and seek collaboration with other networks such as Age Platform, the American Geriatrics Society. We will aim to organise yearly open meetings at EAPC conferences.
The multidisciplinary network of the Reference Group enables efficient collaborations in times of crisis such as the current COVID-19 pandemic. Via this network, we were able to contact representatives of 82 countries across the world to identify guidance on Palliative Care for Nursing Homes during the COVID-19 pandemic. This resulted in the identification of 21 guidances from 8 countries and one from the WHO (updated until April 8 2020). We performed a directed documentary and content analysis and showed that there is a dearth of comprehensive palliative care guidance for COVID-19 for nursing homes. Many key aspects of palliative care are largely unaddressed, including protocols for holistic assessment and management of symptoms and needs at the end of life (including stockpiling medications), education of staff concerning palliative care, referral to specialist palliative care or hospice, advance care planning communication, support for family including bereavement care, and support for nursing home staff. Findings can hopefully inform future palliative care guidance development for COVID-19 in nursing homes, by highlighting unaddressed topics that require urgent attention. The analyses was published in the Journal of Pain and Symptom Management https://www.jpsmjournal.com/article/S0885-3924(20)30372-9/fulltext
WP2 WHITE PAPER ON FRAILTY AND PALLIATIVE CARE
Task leads: Lieve Van den Block, Lara Pivodic, with core group members
The reference group will work to deliver a position paper concerning optimal palliative care for frail older people. Frailty is a widely used term and there are many different definitions and operationalizations, from very specific biological ones to broader biopsychosocial ones. We defined frailty following Clegg and colleagues as a syndrome of physiological decline in late life, characterized by marked vulnerability to adverse health outcomes. Frail older adults are less able to adapt to stressors such as acute illness or trauma than younger or non-frail older adults. This increased vulnerability contributes to increased risk for multiple adverse outcomes, including procedural complications, falls, institutionalization, disability, and death (Clegg et al 2013).
In this work, we will work to (1) define and identify the population for (general and specialist) palliative care; (2) define the key domains of palliative care (general and/or specialist) for this population; and (3) define key recommendations for professionals, policy-makers and researchers. Methods include literature reviews and a consensus-building Dephi method.
WP3 MAPPING EXISTING DATABASES AND IDENTIFYING OPPORTUNITIES FOR PALLIATIVE CARE RESEARCH
Task leads: Lara Pivodic, Lucas Morin, with core group members
This WP3 aims to map the most important of these databases (such as LASA, NewCastle Cohort, Rotterdam Elderly study, SHARE, KLIMOP) and identify and describe opportunities for using them research on palliative care and ageing. In this WP, a number of examples of how such data can be used will be published.
WP4 MAP INCLUSION OF PALLIATIVE CARE IN HEALTH CARE POLICIES REGARDING OLDER PEOPLE
Task leads: Lara Pivodic and Lieve Van den Block
For palliative care to be fully integrated in health care, particularly for older people, who traditionally have less access to palliative care than cancer patients, it will be important that wider health care policies for older people include palliative care as one important element. Country experts of 12 countries in 4 continents identified relevant public policy documents (legislation, policies/strategies, guidelines, white papers) on health care for older people and evaluated inclusion of nine core elements of palliative care using a standardized data extraction form, based on ‘essential practices for palliative care’ (WHO 2016) and quality indicators for palliative care (Leemans et al. 2017). An article “Inclusion of palliative care in health care policy for older people: A directed documentary analysis in 13 of the most rapidly ageing countries worldwide” has been published in Palliative Medicine.
WP5 IDENTIFY AND DISSEMINATE EVIDENCE-BASED PROGRAMMES FOR IMPROVING PALLIATIVE CARE FOR OLDER PEOPLE IN DIFFERENT SETTINGS
Task Leads: Sophie Pautex and Caroline Nicholson, with core group members
We will set up a list of (minimum and optimum) criteria that can be used to evaluate the development and evaluation of programmes designed to improve palliative care older people. Difference good practices (such as the PACE Steps to Success) to improve palliative care for older people, in a variety of settings, will be listed on the EAPC website.
PACE Steps to Success
Steps towards achieving high quality palliative care in your care home
The PACE Steps to Success Programme is an educational and development initiative for staff designed to improve palliative care in care and nursing homes. It aims to develop an understanding what the PACE Steps to Success Programme is and how you can use it to improve the care you provide.
The PACE Steps to Success Programme was developed and tested as part of an international study (2014-2019), funded by the European Commission 7th Framework Programme, which aimed to improve palliative care for older people in care homes.
The information pack, and associated tools, have been prepared for care home managers and facilitators. The PACE Steps to Success Programme provides you with information and resources to help optimise quality of life for all residents and to support their families. It is available in a number of languages and is supported by three resource videos.
1. PACE Steps to Success Information Pack – English 31012019
2. PACE Steps to Success Tools English 31012019
1. PACE Steps to Success Information Pack – Finnish
2. PACE Steps to Success Tools – Finnish
1. PACE Steps to Success Information Pack – Flemish
2. PACE Steps to Success Tools – Flemish
1. PACE Steps to Success Information Pack – Italian
2. PACE Steps to Success Tools – Italian
1. PACE Steps to Success Information Pack – Polish
2. PACE Steps to Success Tools – Polish
1. PACE Steps to Success Information Pack – Dutch
2. PACE Steps to Success Tools – Dutch
1. PACE Steps to Success Information Pack – French