Work

Communicating in Palliative Care for Neurodegenerative Diseases: A Qualitative Study on Professional–Family Interactions

Year: 2026

Type: article

Abstract: Background/Objectives: In Palliative Care (PC), the communication is an essential aspect of care becoming particularly significant at the end-of-life. In neurodegenerative diseases, communication involves additional complexity due to prolonged disease trajectories, early cognitive decline, and frequent loss of decision-making capacity. The aim of this study was to explore PC healthcare professionals’ experiences with communication process and relational dynamics involving families of patients with advanced and terminal neurogenerative disease. Methods: The study design was qualitative, using semi-structured interviews and reflexive thematic analysis. Participants were healthcare professionals directly involved in communication with the family. Results: Twenty PC professionals were interviewed, generating 792 coded excerpts. Four themes emerged: (1) Navigating PC in neurodegenerative diseases, highlighting shift from oncology-centred palliative models toward neuropalliative care, with distinctive relational challenges; (2) Navigating conversations between professionals and families, describing multidisciplinary communication, core clinical and emotional topics, and goal-oriented decision-making in contexts of impaired patient capacity; (3) Facing challenges in health care professional–family communication, including conspiracy of silence, absence of Advance Treatment Directives (ATD) or Shared Care Planning (SCP), and limited collaboration with neurologists; and (4) Envisioning methods for improvement, emphasizing the need for disease-specific competencies, advanced relational skills, interprofessional coordination, and support for professionals’ emotional wellbeing. Conclusions: Communication in neurodegenerative palliative care is an ongoing relational and interpretative process requiring professionals to mediate uncertainty, surrogate decision-making, and caregiver burden. Strengthening disease-specific communication skills, early integrated PC, and structured interprofessional collaboration may enhance shared decision-making, caregiver support, and care continuity.

Source: Brain Sciences

DOI: 10.3390/brainsci16050481

Authors: Barbara Rizzi, Maria Chiara Gandini, Andreina Saba, Giada Lonati, Angela Recchia

Institution: Azienda Sanitaria Unità Locale di Reggio Emilia

Language: English

Topic: Palliative Care and End-of-Life Issues

Subfield: Public Health, Environmental and Occupational Health

Field: Medicine

Domain: Health Sciences

SDG: Good health and well-being

Open Access status: gold

Estimated APC paid: $2,654