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Patient and family caregiver decision-making in palliative care:
A focus on the impact of the 2020 Irish Research Council New Foundations Awards

Dr Geraldine Foley was awarded a New Foundations grant from the Irish Research Council (IRC) in 2020. This week we caught up with Dr Foley to talk about the impact of her research, and how the coveted IRC award has shaped her work.

Dr Foley is an Assistant Professor based in the Discipline of Occupational Therapy, School of Medicine, Trinity College Dublin, and her primary research interest is life-limiting illness focused primarily on stakeholder needs, and care preferences in palliative care, neuropalliative care, neurodegenerative disease, and neurorehabilitation. Palliative care is an interdisciplinary approach to care which aims to improve quality of life and alleviate distress for people with life-limiting illness and their family caregivers. Population-based needs are growing exponentially in palliative care and both patients and family caregivers make difficult decisions about a broad range of treatments and interventions. Patients and family caregivers in palliative care may have similar and different preferences for care. These care preferences may also diverge with illness progression. However, we don’t understand enough about how concordance and discordance manifest and function between patients and family caregivers in palliative care in relation to their preferences for, and decisions about, care.

With this IRC award, Dr Foley conducted a large systematic review of studies reporting on factors related to concordance or discordance between patients and their family caregivers’ care preferences and decision-making in palliative care. Spanning 20 years, 39 relevant studies were ultimately retrieved from an initial search of almost 3,000 studies.

Dr Foley explains the findings of the systematic review:

Research to date on concordance and discordance between patients and family caregivers in decision-making in palliative care have focused primarily on end-of-life care. This concordance and/or discordance is shaped by multiple factors: patient and family caregiver perceptions of caregiver burden, family roles and relations, quality of communication between the patient and family caregiver, patient and family caregiver knowledge of disease and treatment options, patient and family caregiver coping strategies in the context of advanced illness, patient and family caregiver judgements about life-prolonging treatment versus end-of-life care, and by how accepting or not the patient and family caregiver feel towards end-of-life care.

Whilst discordance between patients and family caregivers is often associated with relational conflict, open discussion and dialogue about patient future care can help move patients and family caregivers towards consensus. Overall, Dr Foley’s work indicates that patients and family caregivers in palliative care have capacity to move from periods of decisional conflict to a mutual understanding of each other needs in the context of advancing illness. Interventions focused on helping patients and family caregivers understand and accommodate each other’s preferences for care could prove beneficial in alleviating concerns for both patients and family caregivers in palliative care. As part of this IRC-funded work, Dr Foley collaborated with a broad range of researchers, both locally and internationally. These included St. Francis Hospice Dublin, Our Lady’s Hospice and Care Services Dublin, University College Dublin, Perron Institute for Neurological and Translational Science Australia, University of Western Australia, University of Bristol, University College Cork, University of Limerick, and the All-Ireland Institute of Hospice and Palliative Care.

This work has advanced the understanding of relational decision-making among both patients and family caregivers in palliative care. The findings are particularly useful for healthcare professionals whose are tasked with negotiating complex decisions about care with both patients and family caregivers. Dr Foley emphasised the tangible impact of the work:

This work lays the foundations for much needed research to investigate how patient and family caregiver preferences for care are mediated by one another, and how healthcare professionals can effectively support both patient and family caregiver needs in palliative care.

For more information on palliative care in Ireland visit the website of the All-Ireland Institute of Hospice and Palliative Care https://aiihpc.org; for information on a European level please visit https://www.eapcnet.eu/