International research explores preferences for place of death and end-of-life care of patients with advanced illness to help ensure their choices are honoured

A research team led by the University of Coimbra (UC) is conducting a series of studies to develop an international classification of preferred and actual places for end-of-life care and death for people with life-threatening illnesses. These studies will be carried out in several countries, including Portugal, where there has been no in-depth analysis of patient preferences and their actual fulfilment.

To fill this gap, the research team is conducting a survey of patients, family members and others involved in the process to understand what preferences people in Portugal have and the extent to which they are respected. The researchers hope to identify the main factors that influence the choices that are made, which may be related to the disease, their living environment, or personal motivations. Most importantly, they want to determine whether or not people's preferences are being met.

"This pioneering research in Portugal will provide deeper insight into end-of-life decisions, helping to understand how individual wishes are fulfilled, as well as finding ways to improve care for patients and their families," explains Bárbara Gomes, project leader and coordinating researcher at the UC Faculty of Medicine (FMUC) and the Centre for Innovative Biomedicine and Biotechnology (CIBB).

The study, led by Bárbara Gomes, is part of the project EOLinPLACE – Choice of where we die: a classification reform to discern diversity in individual end of life pathways, funded by the European Research Council (ERC) with 1.8 million euros. In Portugal, the research involves patients (children and adults) cared for by the palliative care teams of the Coimbra Local Health Unit - Hospitals and their families, and interviews are already underway. The study runs simultaneously in three other countries: The United States, the Netherlands, and Uganda.

“This mapping will be crucial to fill gaps and improve palliative care strategies according to patients' and families' preferences,” emphasises Bárbara Gomes. The research protocol is available here.

"The EOLinPLACE team recently reviewed all known literature worldwide on preferences for end-of-life care and place of death. They identified 309 studies published over the last 50 years, involving more than 110,000 patients (adults and children) and over 30,000 family members in Europe, North America, Asia, Latin America, Africa, and Oceania. The findings are now published in the Journal of Pain and Symptom Management.

Sara Pinto, first author of the study and professor at the Nursing School of Porto (ESEP), explains that the team was able to identify “factors associated with greater or lesser congruence between people's preferred and actual place of death, finding, for example, that people with non-malignant diseases and low social status were less likely to have their preferences met or respected.”

"Accurately identifying these preferences is a critical opportunity to positively impact their lives," Pinto emphasises.

Home is the most preferred place for end-of-life care for both patients and family members. Substantial minorities prefer hospitals and hospice/palliative care facilities. Although little is known about whether preferences change with illness progression, this may be the case for some patients and their families.

The review also shows that people's choices were influenced by three main factors: their illness; personal reasons (individual) - dignity, autonomy, or a peaceful death; and environmental factors (such as family support, comfort, or access to medication). Sara Pinto concludes, “Patients and family members face several challenges in providing end-of-life care at home, and the reasons are concerning: they struggle with access to vital medications, a lack of equipment and support during critical moments, and the burden on caregivers”.

“Understanding people's wishes and determining how they are respected or neglected is absolutely crucial. Implementing more effective palliative care policies requires in-depth analysis. Respecting people's preferences, regardless of their health condition, social, or economic status, is critical to ensuring the provision of quality end-of-life care for all and reducing the suffering of patients and their families,” claims Bárbara Gomes.

The researchers also stress that these studies aim to raise awareness of the importance of "encouraging people with palliative care needs to consider and express their preferences, for health professionals to discuss these with families, and for them to work together to find ways to ensure that more people have their wishes honoured".