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.
