International study analyses preferences for place of care and place of death of people with advanced diseases to help them be met

Recently published study by the EOLinPLACE research team aimes to answer the question: Where do patients and their families prefer to be cared for in end of life?

22 february, 2024≈ 4 min read

Recently, the EOLinPLACE team reviewed everything that is known so far in the world about preferences for places of end-of-life care and death. They identified 309 studies published in the last 50 years, conducted with more than 110,000 patients (adults and children) and more than 30,000 members of their families, in Europe, North America, Asia, Latin America, Africa and Oceania. The results are now published in the Journal of Pain and Symptom Management.

Key Messages:
• People have different preferences for where to receive care at the end of life and where to die.
• Most prefer to be and to die at home. Some prefer hospital or a hospice or palliative care facility.
• Patients with diseases other than cancer are less likely to have their preference met.

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In this study developed by the EOLinPLACE team, it was possible to identify "factors associated with a greater or lesser congruence between people's preferences and their actual place of death, and it was possible to realize, for example, that people with non-malignant diseases and low social status had less opportunity to see their preferences fulfilled or respected", highlights Sara Pinto, professor at the Nursing School of Porto, member of the EOLinPLACE team and first author of this review. "Accurately identifying these preferences represents a very important opportunity to change their lives in a positive way," she adds.

Home was the most preferred place by patients and also family caregivers. Hospitals and palliative care facilities were preferred places for substantial minorities. While little is known about whether preferences change as the disease progresses, this may happen for some patients and their families.

This review also reveals that people's choices were influenced by three main factors: the disease that affects them; individual motivations (such as dignity, autonomy, or a peaceful death); and environmental factors (such as family support network, comfort, or access to medication). "Patients and their families face several difficulties in end-of-life care at home. The reasons for this are worrying, with patients and families pointing out difficulties in accessing essential medicines, lack of equipment and support at critical moments, in addition to caregiver burden, explains Sara Pinto.

"Knowledge about people's preferences and how they are or are not respected is crucial and requires in-depth analysis so that more and better palliative care strategies can be implemented. Honoring people's preferences, regardless of their health condition and social or economic status, is a critical aspect of ensuring the provision of high-quality end-of-life care to all, reducing the suffering of patients and their families", explains Bárbara Gomes.

The researchers also underline that these studies aim to draw attention to the importance of "people with palliative care needs to think about and express their preferences, getting health professionals to discuss these with families, and, together, find ways to ensure that more people see their preference fulfilled".