Periodic Reporting for period 2 - EOLinPLACE (Choice of where we die: a classification reform to discern diversity in individual end of life pathways)
Reporting period: 2023-07-01 to 2024-12-31
All humans die, more than 60% from a chronic disease. Whenever possible, end of life care and death should happen where individuals feels is the right place to be, so they feel empowered and safe. Projections show the number of people dying with serious health-related suffering is set to double from 26 million in 2016 to 48 million in 2060. A combination of strong societal and healthcare forces will shape where people will die and be cared for, including ageing (affecting both patients and carers), changes in family structure, and new treatment advances, particularly in heart disease and cancer, which are leading causes of death worldwide. Dementia is another challenging disease on the rise.
Where people die is a complex phenomenon. Until now, science has failed to capture the dynamics and diversity of preferences and places where people are cared for at the end of life. Respecting preferences for place of death is important and it is known that most people would prefer dying at home but many die in hospital. Current classifications of dying places are unfit, inconsistent and do not allow discerning places that have different meaning for individuals. They do not reflect the increasing complexification of dying places. We see potential to do better.
The EOLinPLACE Project is driven by the vision of reforming the way dying places are classified and understood, refining and shifting the focus from the end-point (place of death) to the pathway that precedes it. The overall aim is to develop a strong foundation for a pioneering international classification tool (designated “International Classification of dying Places” (ICP)) that maps preferred and actual places towards death, grounded on what they mean for individuals (beyond a purely physical or medical view).
To achieve this aim, the objectives are:
1. To develop an ICP which fully captures the diversity of places that are meaningful for individuals. To achieve this, we will cross-link data on the experiences of patients with life-threatening chronic conditions and their families with current classifications and data.
2. To examine if an ICP can be robustly applied cross-nationally to map differences in preferences, places of end of life care and places of death. In doing so, we pave the way for future use in global measurement.
3. To deepen understanding of the different pathways and transitions that are meaningful for individuals in caring environments, and their influencing factors.
Our research findings will open new directions in how to care for the dying.
Where people die is a complex phenomenon. Until now, science has failed to capture the dynamics and diversity of preferences and places where people are cared for at the end of life. Respecting preferences for place of death is important and it is known that most people would prefer dying at home but many die in hospital. Current classifications of dying places are unfit, inconsistent and do not allow discerning places that have different meaning for individuals. They do not reflect the increasing complexification of dying places. We see potential to do better.
The EOLinPLACE Project is driven by the vision of reforming the way dying places are classified and understood, refining and shifting the focus from the end-point (place of death) to the pathway that precedes it. The overall aim is to develop a strong foundation for a pioneering international classification tool (designated “International Classification of dying Places” (ICP)) that maps preferred and actual places towards death, grounded on what they mean for individuals (beyond a purely physical or medical view).
To achieve this aim, the objectives are:
1. To develop an ICP which fully captures the diversity of places that are meaningful for individuals. To achieve this, we will cross-link data on the experiences of patients with life-threatening chronic conditions and their families with current classifications and data.
2. To examine if an ICP can be robustly applied cross-nationally to map differences in preferences, places of end of life care and places of death. In doing so, we pave the way for future use in global measurement.
3. To deepen understanding of the different pathways and transitions that are meaningful for individuals in caring environments, and their influencing factors.
Our research findings will open new directions in how to care for the dying.
During the first half of the project, we have conducted an international comparative analysis of the current classifications and place of death data. We retrieved country-level data from death certificates/registrations from 35 countries showing the disparity in the categories of place of death used and flagging the need to standardise records globally. We analysed place of death during a decade (2012-21) including over 102 million deaths of adults and children. We unveiled a rise of home death in the first two years of the COVID-19 pandemic in most of the countries analysed (Lopes et al eClinicalMedicine 2024). The findings matter because they signal a critical shift not seen before in end of life care across many countries, towards dying at home. We called for policy initiatives to ensure that palliative and end of life care resources are appropriately allocated to support the growing trend of home death.
In parallel, we undertook an umbrella review of 15 systematic reviews covering over 200 studies on preferences for place of end of life care and place of death of over 110,000 patients with life-threatening diseases and over 30,000 family members (Pinto et al J Pain Symptom Manage 2024). As reported, home is the most common preference, with meta-analyses indicating 51-55% of patients prefer to die at home. However, we showed there are people who have a preference against home and towards other places, particularly hospitals and hospice or palliative care facilities. Also, there are people who do not have a preference, do not want to think about it or prefer to delegate the decision to the family. We highlighted the need to consider and respect this diversity.
We have also conducted systematic comparative ethnography in 4 contrasting countries – Netherlands, Portugal, Uganda and US. We: 1) reviewed documents concerning policy, laws, regulations and statistics on content about dying places, 2) interviewed and observed families of patients with life-threatening chronic conditions, and are following them up in different places as their illness progresses, and 3) interviewed a wide range of stakeholders about the importance of dying places. Preliminary results have been presented at conferences.
Finally, based on the generated evidence, working alongside the International Alliance of Patients’ Organizations and Eurocarers, and following recommendations from the World Health Organization and the United Nations on the development of international classifications, we produced a preliminary version of the ICP. We began consultation and discussion within our international project advisory group, to ensure the ICP is acceptable to key stakeholders, different languages and cultures.
In parallel, we undertook an umbrella review of 15 systematic reviews covering over 200 studies on preferences for place of end of life care and place of death of over 110,000 patients with life-threatening diseases and over 30,000 family members (Pinto et al J Pain Symptom Manage 2024). As reported, home is the most common preference, with meta-analyses indicating 51-55% of patients prefer to die at home. However, we showed there are people who have a preference against home and towards other places, particularly hospitals and hospice or palliative care facilities. Also, there are people who do not have a preference, do not want to think about it or prefer to delegate the decision to the family. We highlighted the need to consider and respect this diversity.
We have also conducted systematic comparative ethnography in 4 contrasting countries – Netherlands, Portugal, Uganda and US. We: 1) reviewed documents concerning policy, laws, regulations and statistics on content about dying places, 2) interviewed and observed families of patients with life-threatening chronic conditions, and are following them up in different places as their illness progresses, and 3) interviewed a wide range of stakeholders about the importance of dying places. Preliminary results have been presented at conferences.
Finally, based on the generated evidence, working alongside the International Alliance of Patients’ Organizations and Eurocarers, and following recommendations from the World Health Organization and the United Nations on the development of international classifications, we produced a preliminary version of the ICP. We began consultation and discussion within our international project advisory group, to ensure the ICP is acceptable to key stakeholders, different languages and cultures.
The findings from Lopes et al eClinicalMedicine 2024 are a significant breakthrough beyond what is known about place of death globally. This is the largest study of international trends in place of death to date and we have shown, for the first time, the impact of the COVID-19 pandemic in increasing home deaths across countries. Capturing the impact of the pandemic was unplanned but has important implications for care and policy. The findings led to a joint statement from international patient, carer and palliative care associations (IAPO, Eurocarers, International Association for Hospice & Palliative Care and International Children’s Palliative Care Network) calling for governments to strengthen home support for patients with advanced diseases and families who wish to be at home and to die at home. We also provided place of death data for the “Health at a Glance” 2023 report by the Organisation for Economic Co-operation and Development (OECD), contributing to putting place of death under the international political spotlight.
The ICP version is preliminary and will be refined based on findings from two subsequent studies, namely a quantitative survey on patient and family experiences of end of life care in different places and focus groups with a key stakeholders to ascertain content validity. We will then field-test the ICP in our four target countries. If the ICP is proven valid and reliable in different cultures and languages to map preferred and actual dying places in different parts of the world, the way for its future global adoption will be paved. This is the ultimate goal of the EOLinPLACE Project.
The ICP version is preliminary and will be refined based on findings from two subsequent studies, namely a quantitative survey on patient and family experiences of end of life care in different places and focus groups with a key stakeholders to ascertain content validity. We will then field-test the ICP in our four target countries. If the ICP is proven valid and reliable in different cultures and languages to map preferred and actual dying places in different parts of the world, the way for its future global adoption will be paved. This is the ultimate goal of the EOLinPLACE Project.