The UP Study – Understanding Inequalities in Palliative Care for Older People and Providing for Future Need
Palliative Care, Inequalities, Drivers, Financial hardship, Equitable provision, Older persons, Health and social care utilisation, Universal palliative care
Older people with life-limiting conditions account for large proportions of healthcare spending in the Republic of Ireland, yet experience unmanaged symptoms, poor quality of life, and fragmented and low-quality care that does not meet their preferences and needs (Meier, 2011). Moreover, this proportion of the population is growing due to demographic ageing, increasing the number of older people living with multiple serious and life-limiting conditions (Davies and Higginson, 2004). To treat adequately the growing population of older adults, policymakers urgently seek reforms to health systems originally designed to provide acute, occasional care.
Palliative care aims to meet the physical, practical, social, emotional and spiritual needs of individuals who have been diagnosed with a life-limiting condition. Palliative care is delivered by a multi-disciplinary team of health and social care workers who specialise in different disciplines; each providing a different service to the person with palliative care needs. Palliative care is an essential component of good healthcare for older people. Originating in cancer care at end of life, palliative care is now widely recognised as offering potential benefits from early in the disease trajectory of all life-threatening illness (World Health Organization, 2017).
Many countries have in recent years carried out population-based palliative care need assessments to inform policy and service planning. Kane et al. (2015) carried out an assessment for Ireland and reported the most rapidly growing palliative care need in Europe. However, the authors highlighted methodological limitations of the research and advised conducting further work to close the knowledge gap. The value of rigorous assessments of need is clear and a recent UK study attracted significant attention as it projected large increases in palliative care needs over the next 20 years, with particular pressure arising from growing prevalence of dementia (Etkind et al., 2017).
Our knowledge of the specific palliative care needs of older people has also advanced in recent years. From international work, we know that older people are less likely to be offered specialist palliative care services and we have a greater understanding of the personal, professional, organisational and societal factors leading to inequities in service provision. Nationally, a valuable body of work has been conducted. For example:
A Time of Reform
The Irish health care system needs to adapt accordingly to meet existing changing needs. The Irish government has made a commitment to delivering universal palliative care in the future. Universal palliative care means that all people have access to the palliative care services they need, when and where they need them, without financial hardship. This study aims to support the work of the Houses of the Oireachtas* ‘Sláintecare** report 2017’ in providing detailed resource and financial data to underpin Recommendation 4 that universal palliative care is provided within five years (Committee on the Future of Healthcare, 2017, pg. 8).
*The Oireachtas is the legislature of Ireland. The Oireachtas consist of two houses, Dáil Éireann (lower house) and Seanad Éireann (upper house) and the president of Ireland.
** *Sláinte is the Irish language word for “health”.
The aim of the research is to generate evidence on current and future palliative care needs, the magnitude and drivers of financial hardship among the seriously ill and their households; and what is required to effect change and deliver fair and inclusive palliative care services for older people.
The objectives of this study are:
Research Design and Methods
This is a mixed methods study comprising three work packages (WPs):
WP1 Calculating the current and future palliative care need of older people in Ireland (2018-2046):
We will replicate the methods of Etkind et al. (2017) who used quantitative analysis of death registry and population data for England and Wales to estimate palliative care need for the time-period 2006-2014. In addition, data from The Irish Longitudinal Study on Ageing (TILDA) will be incorporated in analysis to provide a more comprehensive description of need.
WP2 Calculating health and social care utilisation, costs of informal care provision and private health expenditure of older people and caregivers: We will utilise quantitative methods to examine formal and informal care utilisation and economic burden. This includes secondary analysis of data from The International Access, Rights and Empowerment studies (IARE I and II), the Community Specialist Palliative Care (CSPC) study, the Economic Evaluation of Palliative Care in Ireland (EEPCI) study, the Household Budget Survey (HBS) and TILDA. Data will also be collected on care utilisation, out-of-pocket costs and outcomes during the last three months of life through a follow-back survey with bereaved caregivers.
WP3 Effective commissioning of palliative care for older people in Ireland- understanding gaps in current practice and what is needed to effect change: We will use qualitative research methods to understand why knowledge regarding best practice for older people is not implemented in practice and to understand what is needed to effect change and deliver fair and inclusive palliative care services for older people. Qualitative data will be collected through semi-structured interviews with commissioners, service providers and focus groups with service users identified by the Expert Advisory Board involved with the study. Thematic analysis will be used to analyse the data gathered.
The research project will help directly inform the development of a national universal palliative care service as recommended by Sláintecare. The results of this research will improve understanding of the factors that facilitate appropriate access and utilisation of formal care services (informal care provision, financial costs, needs, service availability). By capturing the practical insights and experiences of stakeholders, this theoretically grounded study will provide a foundational basis for addressing how inequities in outcomes may be addressed.
Findings and research outputs will be made available through this research project webpage once available. See below for further details.
A peer reviewed paper produced from this research (May et al. 2020) was used by the Department of Health to inform palliative care expenditure profiles within the ‘Spending review 2021: Impact of demographic change on health expenditure 2022-2025’, July 2021 paper.
1 Mar 2018 – 1 Nov 2021
Principal Investigator: Professor Karen Ryan, UCD Clinical Professor, Consultant in Palliative Medicine, Mater Misericordiae University Hospital and St Francis Hospice Dublin.
Co-Investigators: Professor Charles Normand, Emeritus Professor at CHPM and Visiting Professor at the Cicely Saunders Institute, King’s College London, Dr Bridget Johnston, Research Assistant Professor in Health Economics and Policy Centre for Health Policy and Management, Trinity College Dublin and Dr Peter May, Research Assistant Professor, Public Health & Primary Care Research Assistant Professor, School of Nursing & Midwifery, Trinity College Dublin
This research was co-funded by the HSE, and Atlantic Philanthropies and co-ordinated by the Healthy and Positive Ageing Initiative (HaPAI) – a partnership between the Department of Health, HSE and Atlantic Philanthropies [HAPAI/2017/KR]. AIIHPC is supporting research findings dissemination.
Peer Reviewed Papers from this Research:
May P, Johnston BM, Normand C, Higginson I, Kenny RA, Ryan K. Population-based palliative care planning in Ireland: how many people will live and die with serious illness to 2046? [version 2; peer review: 2 approved]. HRB Open Res 2020, 2:35 (https://doi.org/10.12688/hrbopenres.12975.2) [Accessed August 26 2021]
Peer reviewed publication(s) related to this project authored by members of the research team:
Thomas,S, Johnston, J, Barry, S, Siersbaek, R, Burke, S., Sláintecare implementation status in 2020: Limited progress with entitlement expansion, Health Policy, 2021
Johnston, B, Thomas, S, Burke, S., Can people afford to pay for health care? New evidence on financial protection in Ireland, 1st Edition, WHO Europe, WHO Europe, 2020, p1 – 118
Higginson IJ, Yi D, Johnston BM, Ryan K, McQuillan R, Selman L, Pantilat SZ, Daveson BA, Morrison RS, Normand C. Associations between informal care costs, care quality, carer rewards, burden and subsequent grief: the international, access, rights and empowerment mortality follow-back study of the last 3 months of life (IARE I study). BMC Medicine. 2020; 18(1): 1-13.
Yi D, Johnston BM, Ryan K, Daveson BA, Meier DE, Smith M, McQuillan R, Selman L, Pantilat SZ, Normand C, Morrison R S, Higginson IJ. Drivers of care costs and quality in the last 3 months of life among older people receiving palliative care: A multinational mortality follow-back survey across England, Ireland and the United States. Pall Med. 2020 Apr; 34(4):513-523.
Johnston BM, Burke S, Barry S, Normand C, Ní Fhallúin M, Thomas S., Private health expenditure in Ireland: Assessing the affordability of private financing of health care. Health policy (Amsterdam, Netherlands), 2019
Higginson IJ, Daveson BA, Morrison RS, Yi D, Meier D, Smith M, Ryan K, McQuillan R, Johnston BM, Normand C, Bennett E, Cooper F, De Wolf-Linder S, Dzingina M, Ellis-Smith C, Evans C, Ferguson T, Henson L, Kaler P, Kane P, Klass L, Lawlor P, McCrone P, Molony S, Morrison S, Murtagh F, Pannell C, Pantilat S, Reison A, Selman L, Tobin K, Vohora R, Wei G. Social and clinical determinants of preferences and their achievement at the end of life: Prospective cohort study of older adults receiving palliative care in three countries. BMC Geriatr. 2017 Nov 23; 17(1):271.
Groeneveld EI, Cassel JB, Bausewein C, Csikós A, Krajnik M, Ryan K, Haugen DF, Eychmueller S, Keller HG, Allan S, Hasselaar J, Merino TGB, Swetenham K, Piper K, Fürst CJ, Murtagh FEM. Funding models in palliative care: Lessons from international experience. Palliat Med. 2017 Apr; 31(4):296-305.
Selman LE, Daveson BA, Smith M, Johnston B, Ryan K, Morrison RS, Pannell C, McQuillan R, De Wolf-Linder S, Pantilat SZ, Klass L, Meier D, Normand C, Higginson IJ. How empowering is hospital care for older people with advanced disease? Barriers and facilitators from a cross-national ethnography in England, Ireland and the USA. Age Ageing, 2017 Mar 1; 46(2): 300-309.