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.
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 taskforce 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)
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.
The reference group builds on extensive previous collaborations including
- EAPC Taskforce Long-term care facilities (https://www.eapcnet.eu/eapc-groups/archives/task-forces-archives/long-term-care-mapping and https://www.eapcnet.eu/eapc-groups/archives/task-forces-archives/long-term-care-settings
- 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’ (https://www.eapcnet.eu/eapc-groups/archives/task-forces-archives/quality-of-life-in-old-age-until-the-end-collaboration-with-eugms-and-maruzza-foundation-2012 )
- EU funded PACE project http://www.eupace.eu/ with products/tools included at https://www.eapcnet.eu/research/european-union-funded-projects/pace
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 Aging and Palliative Care.
WP1 INTERNATIONAL AGING AND PALLIATIVE CARE NETWORK (task leads: Nele Van Den Noortgate and Sophie Pautex)
This reference groups will consolidate the previous collaborations between the EAPC and EUGMS, and will seek broader collaborations in the field of ageing and palliative care, internationally and multidisciplinary. The reference group will also liaise with members of previous EAPC taskforces on dementia, long-term facilities, and current EAPC Taskforces and reference groups such as the Primacy Care Reference Group and liaise with other organizations involved in older people. The overarching aim under WP1 is to build capacity and collaboration between disciplines, organisations and countries.
Timeline: Core reference group members identified in year 1. Permanent activity to liaise with other networks eg IAGG, WONCA, Age Platform, American Geriatrics Society, etc.
Memorandum of Understanding between EUGMS and EAPC in year 1: representatives of both organisations will be present in the respective Taskforces/Reference groups and the most important products eg white paper should clearly identify representatives of both organisations and endorse the output.
Yearly meetings at EAPC conferences and/or EUGMS conferences: closed meetings of Steering Committee for follow-up of work and open meetings to engage with broader members.
WP2 WHITE PAPER ON FRAILTY AND PALLIATIVE CARE (task leads: Lieve Van den Block, Lara Pivodic; with all executive board 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 et al 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,
3. define key recommendations for professionals, policy-makers and researchers
This work will draw upon (the limited) available evidence from literature reviews as well as consensus-building among different stakeholders (members of the Reference Group and additional experts covering a wide range of disciplines and geographic regions).
Methods and milestones:
Task 1 (Month 1-3): define/operationalise population based on existing definitions and consensus in core reference group
Task 2 (Month 1-18): identify key domains or core components and recommendations with core author group, based on input from reviews:
- Rapid Review of service models to maximize quality of life for older people at the end of life (in press: Evans et al)
- Systematic review of specialist palliative care home care interventions for frail older people identifying to whom, when, and how specialist palliative care is currently provided to older people in primary care, which outcomes are identified, and how this can be improved (under review: De Nooijer, et al)
- overview of existing guidelines/position papers/consensus projects/recommendations regarding palliative care and palliative care models for older people.
Next to the content of care domains that will be covered in this white paper, we will also focus on the applicability of palliative care for this patient group and the identification and difficulties in prognostication.
Task 3 (Month 18-36): build consensus recommendations
Three consensus rounds (Delphi method) to agree on key recommendations and evidence gaps. Consultation will involve older people and family carers of older people (members of PPI groups), researchers, professionals in relevant health and social care domains. A consultation event to determine research priorities will also be organised.
Year 4 write and finalise consensus White paper
WP3 MAPPING EXISTING DATABASES AND IDENTIFYING OPPORTUNITIES FOR PALLIATIVE CARE RESEARCH (Task leads: Lara Pivodic, Lucas Morin)
There are several databases containing longitudinal data on ageing/older populations available worldwide (e.g. LASA, NewCastle Cohort, Rotterdam Elderly study, etc) of which some are open access (e.g. SHARE). A number of researchers, also in the field of palliative care, are studying the use of Big Data (e.g. Taskforce Big Data EAPC).
This WP3 aims to map the most important of these databases 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.
Task 1 Mapping existing longitudinal databases relevant for studying palliative care in older people, describing their characteristics (e.g. owner, accessibility), and identifying example research questions: Publication? Or part of white paper?
Year 3 and 4
Task 2 Example analysis of trajectories of physical and psychosocial well-being using longitudinal data (KLIMOP study, SHARE data) (Lara, Lieve, work ongoing)
WP4 MAP INCLUSION OF PALLIATIVE CARE IN HEALTH CARE POLICIES REGARDING OLDER PEOPLE (lead 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.
Work already performed
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).
These documents will be analyzed (documentary analysis) and a paper will be written. Authors have been identified.
WP5 IDENTIFY AND DISSEMINATE EVIDENCE-BASED PROGRAMMES FOR IMPROVING PALLIATIVE CARE FOR OLDER PEOPLE IN DIFFERENT SETTINGS (Task Leads: Sophie Pautex and Caroline Nicholson)
Task 1 (month 24-30): We will set up a list of (minimum and optimum) criteria that should be used to evaluate the development and evaluation of programmes designed to improve palliative care older people.
Task 2 (month 30-36): We will advertise the opportunity of being included in a list of good practices to improve palliative care for older people, in a variety of settings. Possible programmes are: PACE Steps to Success (and MOOC), Care Guide for Last Days of Life, Age-friendly hospices project etc)
Task 3 All identified good practices will be evaluated using a set of criteria identified under task 1. Programmes fulfilling the minimum criteria will be disseminated/made visible on the website of EAPC together with the criteria, per setting.