What mediates end-of-life care choices?
Authors: Melissa J Bloomer, Catherine Walshe
Journal: The Lancet Public Health (2021)

In The Lancet Public Health, Joanna Davies and colleagues examine the relationship between socioeconomic position and receipt of hospital-based care towards the end of life for older people,1Davies JM Maddocks M Chua K-C Demakakos P Sleeman KE Murtagh FEM Socioeconomic position and use of hospital-based care towards the end of life: mediation analysis using the English Longitudinal Study of Ageing.Lancet Public Health. 2021; (published online Feb 8.)https://doi.org/10.1016/S2468-2667(20)30292-9Summary Full Text Full Text PDF PubMed Scopus (1) Google Scholar showing that lower wealth is associated with increased hospital admissions in the last 2 years of life and a higher probability of death in hospital. This is an important contribution to the literature as it adds weight to the growing understanding of the importance of non-clinical factors such as socioeconomic status to patterns and quality of health care and its usage. These factors have been brought into sharp focus during the COVID-19 syndemic, recognising the biological and social interactions that are important for prognosis, treatment, and health policy.2Horton R Offline: COVID-19 is not a pandemic.Lancet. 2020; 396: 874Summary Full Text Full Text PDF PubMed Scopus (138) Google Scholar Place of death has long been seen as an (imperfect) proxy for care quality, with hospital deaths perceived as potentially indicating a poorer quality of death. However, place of death can and should be considered more broadly, and no one place should be seen as the most appropriate. Even if, for example, care at home is possible, this does not mean that death at home is preferred. Rather, there is evidence that the desire to die at home lessens with age and failing health.3Gomes B Calanzani N Gysels M et al.Heterogeneity and changes in preferences for dying at home: a systematic review.BMC Palliat Care. 2013; 12: 1-13Crossref PubMed Scopus (467) Google Scholar Equally, reasons for hospital admission towards the end of life are many, yet the triggers remain largely unknown and even less understood, despite hospital remaining the place where a high proportion of people die in most cultures and contexts. Recent analysis of a Scottish national dataset showed that social determinants including patient understanding of how to access the right care in a timely manner contributed to the extent of unscheduled care for older people in the last year of life.4Mason B Kerssens JJ Stoddart A et al.Unscheduled and out-of-hours care for people in their last year of life: a retrospective cohort analysis of national datasets.BMJ Open. 2020; 10e041888Crossref PubMed Scopus (2) Google Scholar These findings hint that the reasons behind the high levels of emergency or unscheduled hospital admissions before death are complex and multifactorial, with important factors including public knowledge about resources and services, wealth and socioeconomic position, age, and access to informal caregivers. Older age is associated with higher rates of unscheduled care,4Mason B Kerssens JJ Stoddart A et al.Unscheduled and out-of-hours care for people in their last year of life: a retrospective cohort analysis of national datasets.BMJ Open. 2020; 10e041888Crossref PubMed Scopus (2) Google Scholar and the complexities of managing ageing and a chronic or life-limiting illness, increased dependence, and access or availability to informal caregivers5Buck J Webb L Moth L et al.Persistent inequalities in Hospice at Home provision.BMJ Support Palliat Care. 2020; 10: e23Crossref PubMed Scopus (11) Google Scholar such as family members are likely to be contributing factors. Informal caregivers are integral to supporting older people to stay at home.6Carers UK Facts about carers: policy briefing. Carers UK, London2015Google Scholar But to maintain dignity and social integrity, the older person might prefer to receive care by health-care staff than a family caregiver.7Gott M Seymour J Bellamy G et al.Older people's views about home as a place of care at the end of life.Palliat Med. 2004; 18: 460-467Crossref PubMed Scopus (237) Google Scholar Family caregivers can also be affected financially due to the impact of caregiving on paid employment, and can experience negative physical health due to poor self-care and negative mental health outcomes.8Temple JB Dow B The unmet support needs of carers of older Australians: prevalence and mental health.Int Psychogeriatr. 2018; 30: 1849-1860Crossref PubMed Scopus (12) Google Scholar Hence, even when an older person has social and family supports, there might not be someone willing to take on a caregiving role for them, particularly towards the end of life, resulting in the need for in-hospital care. Even though family presence at death is considered a marker of end-of-life care quality,9Williams BR Lewis DR Burgio KL et al.“Wrapped in their arms”: next-of-kin's perceptions of how hospital nursing staff support family presence before, during, and after the death of a loved one.J Hosp Palliat Nurs. 2012; 14: 541-550Crossref Scopus (21) Google Scholar family readiness for witnessing a person's deterioration and death should also not be assumed. A recent Australian study of in-hospital end-of-life care identified family were only present at death in 58% of anticipated deaths.10Bloomer M Hutchinson A Botti M End-of-life care in hospital: an audit of care against Australian national guidelines.Aust Health Rev. 2019; 43: 578-584PubMed Google Scholar Although the reasons for this are not entirely clear, and could be partially attributed to aspects of cultural difference such as ethnicity and religiosity, these data could reflect a deliberate decision by family members not to witness or be present at death, or an honouring of the dying person's wishes. From a public health perspective, we commend Davies and colleagues on their research, which provides clear justification for systems change to ensure equity in access to services to support preferred place of death, so that location of death is driven by choice, not by wealth.1Davies JM Maddocks M Chua K-C Demakakos P Sleeman KE Murtagh FEM Socioeconomic position and use of hospital-based care towards the end of life: mediation analysis using the English Longitudinal Study of Ageing.Lancet Public Health. 2021; (published online Feb 8.)https://doi.org/10.1016/S2468-2667(20)30292-9Summary Full Text Full Text PDF PubMed Scopus (1) Google Scholar The potential for health inequalities associated with aspects of cultural diversity such as ethnicity, language differences, and religiosity and belief systems; and social factors such as health literacy and awareness of systems and services to support end-of-life care needs to be better understood. What this research highlights is a need for a whole-systems approach to care and care data. The patterns and gaps in care that people receive at the end of life need to be much more fully understood, with data from primary and community care integrated into the more commonly available hospital use data. The triggers behind care transitions must also be investigated with a focus on clinical, economic, social, and cultural issues and interactions—recognising the complexity of the factors that are likely to play into choice and experience. We declare no competing interests. Socioeconomic position and use of hospital-based care towards the end of life: a mediation analysis using the English Longitudinal Study of AgeingOur findings suggest that worse health and function could partly explain why people with lower wealth have more hospital admissions, highlighting the importance of socioeconomically driven health differences in explaining patterns of hospital use towards the end of life. The findings should raise awareness about the related risk factors of low wealth and worse health for patients approaching the end of life, and strengthen calls for resource allocation to be made on the basis of health need and socioeconomic profile. Full-Text PDF Open Access