WE’RE DELIGHTED TO PRESENT THIS MONTH’S ‘EDITOR’S CHOICE’ FROM PALLIATIVE MEDICINE, THE OFFICIAL RESEARCH JOURNAL OF THE EAPC
Each month, Professor Catherine Walshe, Editor-in-Chief of Palliative Medicine, chooses an article that readers may find particularly interesting or useful and invites the authors to draw out the key points on the EAPC blog. Focusing on research that is novel, a robust review, from a specific country or just slightly left of field, the ‘Editor’s Choice’ post aims to share experience and stimulate ideas. We hope you’ll read the longer article in Palliative Medicine – EAPC members can access a FREE copy from the EAPC website.
Djin Tay (Assistant Professor, College of Nursing, University of Utah, USA) and Katherine Ornstein (Associate Professor, Icahn School of Medicine at Mount Sinai, New York, USA), introduce the background to their longer article selected as ‘Editor’s Choice’ in the October 2021 Special Big Data issue of ‘Palliative Medicine’.
The loss of a family member has deep and sometimes lasting impact on those they leave behind. We know a lot about the impact of bereavement on spouses, but we know less about how the entire family’s health may be affected by bereavement. Moreover, it is always challenging to recruit individuals for end-of-life research, and even harder to study the wider family network of deceased individuals. This inspired us to begin to ask how many individuals may be affected by bereavement and to look to national registers that may capture family linkages around the end of life.
Using linked population registries in Denmark, we reconstructed the family networks (partners/spouses, children, grandchildren, great grandchildren) of decedents in Denmark who died between 2009-2016.1 This allowed us to estimate that only three in 10 persons who died from a psychiatric-related condition such as alcohol abuse had family members who lived close to them. In comparison, among those with cancer, almost nine in 10 lived with or close to their family. We also found that one in 10 persons had no living family members at the time of death, and that deceased individuals without families were more commonly male, older, lived in nursing homes, and those who died of psychiatric-related conditions or dementia. Such findings suggest that there may be key opportunities to provide targeted end-of-life support to specific populations. In subsequent work we have used these data to examine differential use of antidepressant medication for partners vs spouses around bereavement2 as well as high use of mental health utilisation among bereaved siblings.3
By linking Danish register data, our work was uniquely positioned to support analyses of family characteristics around the death of an individual. This research opens up the doors to study at-risk groups who may have poorer social support and resources often associated with having close family. This research also identifies groups with no family around the time of death, for whom the detrimental effects of social isolation may have a greater impact. We have since identified other data that links families to study end-of-life outcomes,6 and will continue to expand research in the field of bereavement impact on family systems.
Denmark provided a unique opportunity to conduct this research because of their remarkable system for tracking of individuals, linkage to families and palliative care register. And while we can learn much from Denmark, we must also consider the cultural context of our findings. Denmark is a small country with high levels of individualism, low fertility, high rates of living alone, and exceptionally strong state-based support for older adults. Family availability and support and its impact on end-of-life experiences will likely vary across cultures.
Families form the fabric of society in life as well as death, and it is important to understand the wider impact of bereavement on the surviving family network to improve the delivery of palliative care. This is especially challenging now as COVID-19 has resulted in global loss of over 4.6 million with long-lasting bereavement effects.4,5 Population-based registries with family linkages may hold the key to the questions we hope to answer.
- Kristensen, M. S., Thygesen, L. C., Tay, D. L., Kumar, R., Grønvold, M., Aldridge, M., & Ornstein, K. A. Size and composition of family networks of decedents: A nationwide register-based study. Palliative Medicine. 2021. 0269216321998602.
- Ornstein KA, Aldridge M, Gillezeau C, et al. New antidepressant utilization pre- and post-bereavement: a population-based study of partners and adult children. Soc Psychiatry Psychiatr Epidemiol. 2020;55(10):1261-1271. doi:10.1007/s00127-020-01857-1
- World Health Organization. WHO Coronavirus (COVID-19) Dashboard. World Health Organization. September 13, 2021. Assessed September 13, 2021. https://covid19.who.int/
- Joaquim, R. M., Pinto, A. L., Guatimosim, R. F., de Paula, J. J., Costa, D. S., Diaz, A. P., … & Malloy-Diniz, L. F. Bereavement and psychological distress during COVID-19 pandemics: The impact of death experience on mental health. Current Research in Behavioral Sciences, 2, 2021. 100019.
- Tay DL, Ornstein KA, Meeks H, et al. Evaluation of Family Characteristics and Multiple Hospitalizations at the End of Life: Evidence from the Utah Population Database. Journal of Palliative Medicine. 2021.
More about the authors
Djin L. Tay, PhD, RN, is Assistant Professor, Division of Acute and Chronic Care, College of Nursing, University of Utah, USA. Dr Tay is Vice President’s Clinical and Translational (VPCAT) Research Scholar (2021-2022); 2020-21 Family Caregiving Collaborative Caregiving Scholar. Read more here.
Follow Djin @DjinLL
Katherine Ornstein, PhD, MPH, is an epidemiologist and Associate Professor in the Department of Geriatrics and Palliative Medicine and the Institute for Translational Epidemiology at the Icahn School of Medicine at Mount Sinai, New York, USA. She serves as the Director of Research for the Institute for Care Innovations at Home at Mount Sinai and the Mount Sinai at Home clinical programs. Read more here. Follow Katherine @MSHSGeriPalCare
READ THE FULL ARTICLE IN ‘PALLIATIVE MEDICINE’
This post relates to the longer article, ‘Size and composition of family networks of decedents: A nationwide register-based study’, by Marie S Kristensen, Lau C Thygesen, Djin L Tay, Raj Kumar, Mogens Gronvøld, Melissa Aldridge, Katherine A Ornstein, published in Palliative Medicine 2021 Volume 35 issue: 9, page(s):1652-1662. Article first published online: 6 April 2021. Issue published: 1 October 2021. https://doi.org/10.1177/0269216321998602
- Read earlier Palliative Medicine Editor’s Choice posts on the EAPC blog.
- Follow Palliative Medicine on Twitter @palliativemedj
EAPC MEMBERS – DOWNLOAD THIS, AND ALL OTHER ‘EDITOR’S CHOICE’ ARTICLES, FREE OF CHARGE
If you are currently an Individual or Associate EAPC Member you have full access to the Members’ Area of the EAPC website, and the chance to download a free PDF of all ‘Editor’s choice’ articles, as well as many other membership benefits. Just click here, enter your email address and membership password and choose from the list of journal articles for 2021.