Project End of Life in Place: choice & diversity in end-of-life care paths

An Interview with Sara Pinto (Postdoctoral Researcher) and Dorothy Olet (PhD Fellow) about the Project End of Life in Place

Conducted by Julia Downing (Chief Executive Officer at International Children's Palliative Care Network). More about the project.

Sara and Dorothy, firstly can you both tell me about your background and your interest in children’s palliative care.  

Sara: I'm a nurse currently working in Portugal as a Professor of Nursing in Porto. I’ve worked as a nurse in the vascular surgery wards and met many people with advanced chronic diseases, often at the end of life. I recognised that I needed to develop my expertise in this area, to gain knowledge about dealing with suffering, death and dying. I signed up for a master's degree in palliative care. Later on as part of my PhD, I looked at the concept of comfort as a nursing intervention. Another reason that I’m interested in CPC is a personal one.  As a young child, my older sister passed away when she was 16 years old. I was four at that time. It was a big thing and perhaps because of that I've always had a particular interest in issues related to suffering, finding meaning in life and spiritual care. 

Dorothy: I’m a researcher in Uganda and a lecturer at the Institute of Hospice and Palliative Care in Africa. I hold a first degree in medicine, a master's in public health and a master's in palliative care. My research interests are in improving the quality of life of patients with palliative care needs, especially children.  I have also had a personal interest in palliative care since 2003, when my mother became ill and also when my nephew, who was then about four years old, had leukaemia and needed palliative care. So this ignited my passion for palliative care, especially for paediatric palliative care. 

Can you tell me a bit about the End of Life in Place project?

It is an international project funded by the European Research Council. It's led by the University of Coimbra in Portugal and is being conducted in four countries - Portugal, Netherlands, Uganda and USA.  It is co-ordinated by Dr. Barbara Gomes and we’re looking to better understand the places where people, including children, are cared for at the end of life and aims to design and test the first international classification of places of death.

What are your roles in the project?

Sara: My collaboration with the project started in 2022 as a post doctoral research student. I conducted an umbrella review of the evidence on the preferences about time and place of end of life care and death, including the perspectives of children and their parents. I continue to be involved in other components of the project as an external research collaborator.

Dorothy: My role in the project started in January 2023. I work as an invited assistant investigator at the Faculty of Medicine at the University of Coimbra undertaking my PhD at NOVA School of Public Health. The focus of my PhD dissertation will be on diversity of end of life pathways among children with life- threatening conditions. So I'm looking at the paediatric component of the project and also participating in other project activities as we are looking at the international classification of place of death. 

Sara, can you tell us about your literature review?

We identified 15 systematic reviews covering 309 studies conducted in the last 50 years, mostly in European and North American countries. This study was looking at both adults and children with different health conditions, cancer and non-cancer and their family caregivers. We found that most patients prefer to be, and to die, at home because of the presence of family, more autonomy, more sense of dignity, and most family members also prefer this. However, it's important to highlight that sometimes homecare is challenging and hospitals, hospices and other palliative care facilities were also considered as preferred places. Regarding factors and changes over time, people's preferences are influenced by several factors, such as their illness, personal reasons, the environment around them, but we still know relatively little about whether people, including children, change their preferences as their health gets worse. 

We also looked at how often preferences for place of care of death were met. Research varies on this. We saw that there was higher congruence in studies since 2004, and that non-cancer patients were less likely to have their preferences met. Only two reviews focused on paediatric patients and both were of low quality. There was no data related to place of care preferences for children and just one low quality study that looked at preference for place of death. Most study participants were parents reporting on the preference of their children as proxies and family perspectives were captured only as qualitative data. The findings show that some families preferred a hospital death for their child, particularly during the last month of life, and some reported that they had bad memories associated with home. There is an important study conducted with 40 adolescents with HIV in the United States, published in 2010, which showed that 60% of these adolescents preferred to die at home, around 5% preferred to die in a hospice, and about 15% in the hospital. And, curiously, 20% had no preference. 

There is a paucity of studies that ask children about end of life.  International studies emphasise the complex issues, not only for ethical issues, but also the lack of funding for clinicians to do this kind of research and the issue of parent gatekeeping. We hope that our findings could be a crucial starting point to address these gaps. 

It's a big project with several work packages. Which other elements of the project are you working on that relate to children and young people? 

Dorothy: I'm currently working on a study looking at diversity in place of death among children internationally, specifically looking at examining diversity in place of death among children with life-threatening conditions. There are some preliminary results, which show that the majority of children, about 70%, died in hospital and health institutions, and about 12.5% in homes.  About 11% of places of death are ill defined. The project will provide a comparison of end of life care pathways for children with life-threatening conditions in Portugal, Netherlands, Uganda and USA and will explore the factors associated with undesired transitions among children with life-threatening conditions in these four countries. This is something for us to look forward to understanding more about.

Sara: I am collaborating in a document analysis to explore the extent to which health policy and strategic documents for palliative care refer to preferred places of care and death, for patients and families, including children. We hope that our work will provide more people with the opportunity to discuss and express their preferences and to improve future services for children and their families.