Types of Legacies and Their Impact In Palliative Care at End-of-Life: a Systematic Scoping Review

Antonino Gomes¹, Rita Mascarenhas Pessoa^2*, Manuel Luís Capelas³

¹Catholic University of Portugal, Institute of Bioethics (IB), Lisbon, Portugal; Local Health Unit of Matosinhos, Spiritual and Religious Assistance Service

²Local Health Unit of Amadora-Sintra, Prof. Fernando Fonseca Hospital, Nurse in the Palliative Care Team, Lisbon, Portugal

³Catholic University of Portugal, Faculty of Health Sciences and Nursing, Interdisciplinary Research Centre for Health (CIIS), Lisbon, Portugal

*Corresponding Author Antonino Gomes de Sousa, Catholic University of Portugal, Institute of Bioethics (IB), Lisbon, Portugal; Local Health Unit of Matosinhos, Spiritual and Religious Assistance Service, Email: s-angosousa@ucp.pt

Abstract

Objective: The aim of this review is to identify the types of legacy most frequently developed and used as a therapeutic approach in palliative and end-of-life care and to understand the impact of legacy building on patients, their families, informal caregivers and the healthcare team.

Introduction: The primary purpose of legacies is to provide greater meaning during the time of vulnerability experienced by individuals at the end of life. Legacy building is understood as a contribution to care in the final phase of life, with the potential to positively influence relationships with the healthcare team and family members, while offering patients increased comfort, dignity and acceptance by enhancing their sense of meaning and purpose.

Inclusion criteria: This review included studies involving adult palliative care patients aged 18 years or older, focusing on the strategies, types and/or impact of legacy. Eligible patients were those receiving care from palliative care teams, cognitively capable of engaging in legacy building and supported by a family caregiver or a social support network. Studies meeting these conditions were included.

Methods: A bibliographic search was conducted across eight international databases: PubMed, CINAHL (via EBSCO), Scopus, Web of Science, Cochrane, BASE, ProQuest and RCCAP, using the MeSH terms “palliative care”, “palliative medicine”, “hospice care”, “terminal care” and “terminally ill”. Articles published in English, Spanish, Italian and Portuguese were included, as well as grey literature retrieved from additional databases. The Preferred Reporting Items for Systematic Reviews extension for Scoping Reviews (PRISMA-ScR) was applied to ensure reproducibility, transparency and quality. Searches were performed in January 2024 and updated in December 2024.

Results: A total of 37 articles were included in this review. The findings suggest a growing interest in legacy building within palliative care. Several intervention strategies were identified; however, few studies proposed a structured approach to legacy creation. Most studies adopted the Dignity Therapy protocol as the primary strategy. Two main types of legacy predominated: the Generativity Document, derived from the application of Dignity Therapy and the Life Narrative. Some articles reported incomplete legacies or legacies withheld from family members at the patient’s request. Overall, most studies indicated that legacy building had a positive impact on patients, family members and/or palliative care teams. Nurses, physicians, psychologists and spiritual care providers were most frequently identified as professionals involved in the process. The results highlighted that legacy building, when integrated into care, contributes significantly to acceptance and understanding of loss for both patients and families. Collectively, the evidence suggests that legacy building may also support symptom management by fostering a sense of serenity and acknowledgement of illness.

Conclusions: Legacy building promotes reflection on individual’s life experiences, fostering self-analysis and meaning-making. This intervention is essential in palliative care and plays a significant role in both the grieving process and the course of end-of-life care, with positive impacts on patients, families and caregivers. As this remains an underdeveloped field, the present findings are expected to open new perspectives for research, training and the incorporation of legacy building within palliative care practice.