“Most patients at the end of their lives prefer to receive their last care and die at home, with their families, with greater autonomy and dignity. Most of the patients’ relatives prefer this too.”
This is the conclusion of a study carried out by Sara Pinto, a researcher at CINTESIS and lecturer at the Nursing School of Porto (ESEP), recently published in the Journal of Pain and Symptom Management.
“This is the first study to aggregate, synthesize and analyze what is known worldwide about the preferences of patients and their families regarding end-of-life care and place of death,” explains the author.
The work includes data from 309 studies published over the last 50 years (1974-2021), in 307 countries and on five continents, referring to more than 100,000 patients, adults and children, with various diseases, both oncological and non-oncological, and more than 30,000 family caregivers.
Although the majority of patients prefer to die at home, this research shows that “there are also patients who prefer the hospital or a palliative care service, especially when home care is difficult, for example, in the face of symptoms that are difficult to control or the burden on the caregiver”.
“People’s preferences are influenced by various factors, such as the disease, personal reasons (for example, previous experiences and attitude towards illness and death) and the environment around them (such as knowledge and previous experiences of health services). We don’t yet know whether people change their preferences as their health worsens, but they may do,” says Sara Pinto.
As for the agreement between the preferred place of death and the place where patients actually die, the studies indicate that “non-oncology patients are less likely to have their preferences met, as are people from lower social statuses”.
For Sara Pinto, “It is important to recognize the home as a preferred place for end-of-life care and death, both for patients and their families”.
In this regard, “It is essential to develop and implement strategies to promote care at home. Patients and their families face various difficulties, such as access to essential medicines, lack of equipment and support at critical moments, as well as the burden on caregivers.”
The CINTESIS/ESEP researcher advocates the need to implement “systematic procedures for recording preferred locations and the actual location”. These records should be updated regularly, bearing in mind that “preferences can change”.
“Monitoring these records is essential. Ensuring and complying with preferences should be an indicator of the quality of care and therefore a mandatory record item,” she stresses.
In addition, “the preparation and training of family caregivers should be the subject of ongoing investment and monitoring, as burden is a major problem and, in some circumstances, may condition respect for the preference to be cared for and to die at home.”
Este estudo foi desenvolvido no âmbito do projeto financiado pelo Conselho Europeu de Investigação e liderado pela Universidade de Coimbra, sob coordenação da investigadora Bárbara Gomes. O objetivo é criar uma classificação internacional para registar os locais de cuidados e de morte, preferidos e reais, de pessoas com doenças avançadas.
This study was carried out as part of the EOLinPLACE – Choice of where we die: a classification reform to discern diversity in individual end of life pathways, funded by the European Research Council and led by the University of Coimbra, under the coordination of researcher Bárbara Gomes. The aim is to create an international classification to record the preferred and actual places of care and death for people with advanced illnesses.