Barriers, Facilitators, and Unmet Needs for Achieving a Good Death in Catalonia: A Joint Perspective of Users, Relatives and Professionals

Background: & Objective: Awareness of end-of-life care and patients’ rights has grown substantially, leading to increased attention on the quality of care provided during the final stage of life.

 However, most existing studies have focused primarily on the views of family members and healthcare professionals. In the region of Catalonia, no previous research had explored what constitutes a “good death” from the perspective of patients, families, and professionals. This gap limits the ability to shape person-centred, integrated end-of-life services, identify unmet needs, and align care provision with citizens' values and preferences.

This study aimed to identify barriers, facilitators, and unmet needs throughout the end-of-life pathway and specifically in the process of dying, from a multidisciplinary and multi-stakeholder perspective, within the framework of the Catalan Observatory of Death.

 

Methods: A qualitative study grounded in phenomenological, hermeneutic and socio-constructivist perspectives was conducted in two phases. We undertook 25 semi-structured, in-depth interviews with adults living with advanced or complex chronic conditions and their relatives, at home and in long-term care settings. Additionally, three online focus group discussions were held with health and social care professionals — including clinical staff, community practitioners, managers, and strategic planners — alongside patient and family representatives. All interviews and focus groups were audio-recorded, transcribed verbatim and analysed using qualitative content and discourse analysis techniques.

 

Results: Two key determinants emerged as pivotal to achieving a good death. First, the understanding of what a “red line” is for each person — a deeply personal threshold beyond which life is perceived as no longer bearable due to loss of quality of life, autonomy or dignity. Second, attitudinal profiles influenced the extent to which individual’s exercised agency over end-of-life decisions, particularly regarding symptom management, place of care, and advanced decision-making. There were facilitators and barriers that can be used as improvement areas within the system. As one participant expressed: “It is very good that you care about how we die, but it is pointless if you do not first care about how we live before dying.” This quote encapsulates the importance of a life-course, compassionate and community-based approach to end-of-life care. Unmet needs related to adequate and dignified physical settings for dying, clear communication on patient rights and advance care Planning, holistic and multidisciplinary training for professionals, structured support for informal caregivers, and enhanced psychological and emotional support for patients and families.

 

Conclusions: A more person-centred, integrated and socially-engaged model of end-of-life care is required to honour individuals’ values, preferences and dignity. Recommendations derived from the study include:

• systematically eliciting and respecting end-of-life preferences
• normalising conversations about death through public engagement
• strengthening professional training in communication and compassionate care
• increasing resources and simplifying administrative processes

This study is part of the Observatory of Death of Catalonia. Please find more available information:

https://observatorisalut.gencat.cat/ca/observatori_mort/estudi-de-la-bona-mort/