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.

Keywords: End of life care; legacy; palliative care; palliative medicine; terminally ill

Introduction

Legacy building by patients at the end of life has emerged as a relevant area in both palliative care (PC) practice and research. There is growing recognition of its role as part of the therapeutic, existential and relational process, carrying implications for quality of life and for the spiritual and emotional well-being of both patients and their families [1].

The primary purpose of legacy is to provide greater meaning during the time of vulnerability experienced by individuals at the end of life. According to the international literature, legacy encompasses everything a person leaves behind - how they wish to be remembered and the elements (both positive and negative) by which they will be recalled” [2]. Legacy is understood as a reflection of a person’s life, values and identity. This human need for our lives to be witnessed is closely related to the concepts of meaning, significance and purpose. In this regard, Viktor Frankl wrote: “the only thing worse than suffering is suffering that goes unwitnessed” [3].

As Breitbart states, “conceiving legacy as a means of transmitting vital spiritual and cultural information and wisdom suggests an ever-evolving continuum. There is thus the legacy that we are given and receive from our ancestors (e.g., grandparents, parents) and the legacy that we give to the next generation. The legacy that we are given shapes us in ways that are often apparent (sometimes less so) in how we live our lives: the values, virtues, traditions and attitudes we either choose to adopt or reject. For most of our patients, legacy is understood as what I leave behind after I die or how will I be remembered after I die” [2]. Patients expressed the desire to be remembered, to pass on wisdom and to feel that their lives had mattered [4].

In the context of PC, legacy may be understood either as a deliberate construction, exemplified by structured interventions such as Chochinov’s Dignity Therapy [5], or as a semi-structured process that unfolds through interaction and reflection on life in the context of approaching death. Legacy-building interventions are typically person and family centered, involving a process of reflection on life’s most meaningful moments, shared memories, reconciliation, the transmission of values and other significant events. These processes often result in the creation of tangible legacies such as letters, photo albums, music, videos, recordings, or hand casts. Such approaches aim to foster a sense of meaning, recognition and continuity in patients, while enhancing dignity and strengthening family bonds [1].

These interventions may support patients in creating a sense of coherence and continuity in the face of death, while fostering generativity by encouraging them to acknowledge and communicate the influence they have had on others [1, 6]. Evidence further suggests that, although quality of life and well-being inevitably deteriorate as illness progresses, patients may still experience dignity through such interventions until the end of life [7].

The existing literature supports an association between legacy building and significant improvements in social, emotional and spiritual well-being, as well as reductions in depressive symptoms and anxiety [8]. Nevertheless, despite its widely recognized benefits, research in this field and its subsequent clinical application remain underdeveloped. Existing research exhibits considerable methodological heterogeneity, ranging from qualitative, quantitative and mixed-methods designs and varying in target populations, clinical contexts, assessment instruments and approaches to legacy creation.

For the purposes of this review, the key concept of legacy will be understood as a co-constructed process between patient and healthcare professional, in which messages, memories, narratives and values to be transmitted at the end of life are emphasized. Accordingly, the term legacy building will be used to describe the process through which patients create their legacy in the context of end-of-life care.

Evidence suggests that, through intentional legacy building supported by healthcare teams, new dynamics of acceptance of illness, dying and death may emerge - for patients as well as for their families and both informal and professional caregivers [7, 9]. Legacy is thus envisaged as a valuable contribution to end-of-life care, fostering positive relationships with care teams and family members and offering patients greater comfort and dignity.

In the light of the growing interest in this topic, a systematic scoping review of the literature was undertaken to analyze the concept, typologies and strategies of legacy and to synthesize the evidence concerning its impact.

The aim of this review was to identify the types of legacy most frequently constructed and used as therapeutic approaches in palliative and end-of-life care and to understand the impact of legacy building on patients, their families, informal caregivers and the multidisciplinary PC team. Legacy construction has been described as a process that “encourages patients to focus on the essential aspects of their lives in shaping how they will be remembered, with the recognition that such reflections may benefit those who will grieve their loss” [10].

This approach not only allows for the identification of existing interventions, but also provides insight into how they have been implemented, with what aims, in which contexts, with what outcomes and with what ethical considerations.

Furthermore, this review provides a useful framework for future systematic reviews by delineating areas where the evidence is most robust and highlighting those where important gaps persist. It also offers a foundation for clinical practice by identifying examples of good practice, barriers to implementation and stakeholders’ perspectives.

Review questions

1. Which strategies have been developed and implemented for legacy building in palliative and end-of-life care?
2. What types of legacy have been described in the literature?
3. What impact do legacy-building interventions have on patients, families and healthcare professionals?

Inclusion criteria

Participants

This systematic review included studies involving patients receiving PC (with chronic, incurable and advanced illness, regardless of medical diagnosis), aged 18 years or older, as well as their family members and healthcare professionals (including physicians, nurses, physiotherapists, psychologists, social workers, spiritual care providers and occupational therapists) working in specialized PC services.

Concept

This systematic review considered studies that addressed and identified the types of legacy most frequently developed and used as therapeutic approaches in palliative and end-of-life care and/or examined the impact of legacy building as a therapeutic intervention on patients, their families, informal caregivers and the care teams.

Context

This systematic review considered studies conducted in specialized PC settings, specifically in PC units and inpatient hospice units. Studies outside these contexts were not included.

Types of sources

This systematic review considered quantitative, qualitative, mixed-methods studies and systematic reviews. Quantitative methods included any type of experimental study (such as randomized controlled trials, non-randomized clinical trials or other quasi-experimental studies), as well as observational designs (descriptive studies, cross-sectional studies and case studies). Document types such as letters to the editor, commentaries, opinion articles and editorials were not included.

Methods

This scoping review followed the JBI methodology for scoping reviews.

Search strategy

A systematic scoping review of the literature was conducted on legacy building in palliative and end-of-life care (concept of legacy; types of legacy; legacy strategies and existing evidence on its impact). A bibliographic search was performed across eight 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” (Appendix A). Grey literature identified through searches in other sources was also included. The Preferred Reporting Items for Systematic Reviews extension for Scoping Reviews (PRISMA-ScR) [11], was used as a reporting framework to ensure transparency and methodological quality. The review was carried out in January 2024 and updated in December 2024. Studies published in English, Spanish, Italian and Portuguese were included to ensure linguistic diversity relevant to the topic, consistent with the language proficiency of the reviewers. No restrictions were applied regarding year of publication.

Study selection

After the search, all identified citations were collated and uploaded into Rayyan software (https://new.rayyan.ai) [12], duplicates were removed within the platform. The selection process was carried out independently and in a blinded manner by two reviewers. Titles and abstracts were then screened against the inclusion criteria. Potentially relevant studies were retrieved and assessed in full by both reviewers. Disagreements between reviewers were resolved through videoconference. The entire process is illustrated in [Figure 1].

Figure 1: PRISMA-ScR flow diagram showing the identification, screening, eligibility and inclusion of studies.

Data extraction

Data extraction was performed independently by two reviewers using the data extraction template described in Appendix B. Extracted data included information on authors, year of publication, country of study, title, objectives, participants and population, methods and a summary of relevant results, as presented in Appendix C. In addition, specific data were collected regarding strategies for legacy building, types of legacy and their impact, as detailed in Appendix D.

Data presentation

Based on the preliminary search and the review questions, the framework in Appendix D was developed. Its adequacy and comprehensiveness were tested by piloting it with the first five articles.

Results

Study inclusion

A total of 1,878 records were identified across the databases searched. After removal of duplicates (n = 1,114), 764 titles and abstracts were screened. At this stage, 643 records were excluded for not meeting the inclusion criteria and 121 full-text articles were retrieved for detailed assessment. Of these, 84 studies were excluded, with reasons provided in [Figure 1]. In total, 37 articles were included in this review. An additional 3 articles were identified through other sources (grey literature) but were excluded as they did not meet the eligibility criteria. The PRISMA-ScR flow diagram [Figure 1]. illustrates the study selection process.

Characteristics of included studies

All articles included in this systematic review were published between 2003 and 2022, with 23 appearing in the last 10 years. With the exception of three, all were published in peer-reviewed scientific journals. The majority of study populations comprised oncology patients admitted to PC units (hospices). Regarding geographic origin, the United States was the most represented country with 17 studies, followed by Canada (5), Portugal (4), Italy and Australia (3 each) and finally the Philippines, India, United Kingdom, Germany and Denmark with one studie each. The main characteristics of the included articles are detailed in Appendix C.

Review findings

The aim of this review was to map existing knowledge on legacy-building strategies and types, as well as their impact on patients at the end of life, their families and healthcare professionals and/or teams. Interest in legacy building and its impact is increasingly reflected in the literature, particularly in the context of palliative and end-of-life care. The findings suggest a growing engagement of healthcare professionals with this intervention, especially in specialized PC settings.

Three guiding questions were raised for this review: (1) Which strategies have been developed and implemented for legacy building in palliative and end-of-life care? (2) What types of legacy have been described in the literature? (3) What impact do legacy-building interventions have on patients, families and healthcare professionals?

Regarding Question 1 (Which strategies have been developed and implemented for legacy building in palliative and end-of-life care?), a predominance of the Dignity Therapy Protocol was observed, most commonly through the use of the semi-structured interview guided by Chochinov’s framework of questions, listed in [Table 1], [7]. Nearly half of the studies included in this review applied this protocol, with 18 of the 37 selected articles (48.6%) reporting its use.

Table 1: Question framework of the Dignity Therapy protocol.

Regarding Question 2 (What types of legacy have been described in the literature?), the Generativity Document, resulting from the Dignity Therapy strategy, was the most frequently reported type, identified in 18 articles. Twelve studies focused on Life Review, six on the creation of a Legacy Document and four on legacy expressed through art. A detailed synthesis of this information is provided in Appendix D.

Regarding Question 3 (What impact do legacy-building interventions have on patients, families and healthcare professionals?), the findings indicate a positive impact of legacy building on patients, families and care teams, as summarized in [Table 2]. Legacy-building interventions were reported to humanize care, facilitate reconciliation with death and foster emotional and spiritual connections among patients, their families and healthcare professionals.

Table 2: Summary of results on the impact of legacy building.

Discussion

Legacy building in the end-of-life context has increasingly been recognized as both a therapeutic approach [13], and a central dimension of contemporary PC, integrating patients’ existential, relational, emotional and spiritual needs.

This supportive strategy represents a concrete response to the multidimensional suffering - physical, psychological, social and spiritual - that characterizes the final stage of life. As Chochinov observes, “palliative interventions must move beyond the domain of pain and symptom management to fully address a broad and complex range of expressed needs” [7]. Legacy building therefore emerges as a means of restoring meaning, purpose and dignity in a time of extreme vulnerability. To alleviate suffering, enhance quality of life and reinforce dignity, patients are offered the opportunity to address the issues they consider most significant, or to speak about what they most wish to be remembered for as death approaches [14, 15].

Legacy building, as a profoundly human and relational strategy, enables patients to affirm the continuity of their identity through the sharing of memories, values, affections and life lessons. Legacy, understood as “a living representation of the person’s identity” [1], offers the opportunity to revisit one’s life narrative, reconcile past events and project a sense of future continuity [16, 4, 17]. As Hesse notes, “Biographical work is regarded as a form of legacy construction and personal narrative, allowing patients to transmit memories, values and experiences. The possibility of leaving something for family members and for posterity is highly valued” [16]. The process of legacy building also provides an “opportunity to complete an informal life review and to discuss meaningful experiences or lessons learned” [18].

As Neller observes, this process provides an opportunity for self-discovery, as if offering a gift both to the writer and to the recipient, fostering generativity and a sense of immortality. “An ethical will is intended to share one’s life for the benefit of another person, promoting an enduring connection across generations and reinforcing the notion of generativity” [6]. Creating and sharing an ethical will thus represents an intentional way of being remembered and of establishing a lasting intergenerational bond. Legacy building can therefore offer the writer an opportunity for deeper self-knowledge, a sense of growth and meaning and a way of leaving part of themselves to others. As Piderman reports, in the words of one patient: “Writing all this made me realize how much I have learned and the journey I have taken” [19].

Through structured methodologies such as Dignity Therapy, or more spontaneous approaches like life review, patients are invited to revisit their life journey and to share “what they most wish to be remembered for as death approaches” [5]. The resulting generativity documents often contain “declarations of love, significant expressions and above all, memories” [5], serving as therapeutic tools that foster relational closeness and have a meaningful impact on patients, families and caregivers alike.

The possibility of leaving something as a remembrance allows suffering to be transformed into testimony, addressing the need to be authentically remembered. As Schryer observes, “legacy documents are narrative representations of identity and meaning-making at the end of life and in telling their stories, patients enact a form of generativity” [20].

This supportive strategy enables the final stage of life to be approached with a sense of inner peace, arising from the awareness of having left something meaningful and a remembrance for the lives of family members [21]. This process may help alleviate existential suffering, promote emotional well-being and strengthen hope and a sense of belonging [8, 18].

It is important to emphasize that legacy, as it emerges from the patient’s personal narrative, also carries an ethical dimension. It represents a way of affirming the right to be treated as a person until the very end, at a time when depersonalization and silence may pose real threats or, as Coyle observes, “not to be treated as a patient, but to continue to be treated as a human being” [22]. In this sense, dignity must remain the foundation of care and of legacy construction, which goes beyond simple remembrance to become “an opportunity to examine and reflect on one’s life, in order to find deeper meaning and to reduce the anxiety associated with dying. The aim is to reduce emotional suffering, promote quality of life, validate personal identity and dignity, alleviate distress, offer a sense of meaning to the participant’s life and provide a legacy document for family and friends” [23].

This practice acquires an even deeper significance viewed through the lens of spirituality, as legacy building “offers a source of meaning for the terminally ill patient, as a project of love to complete and to leave to their loved ones” [13].

Legacy – “what one leaves behind and how one hopes to be remembered after death”—is a relatively unexplored yet important dimension in the decision-making processes of people with serious illness [24]. Reflecting on personal values and legacy in the context of serious illness may enhance dignity, purpose and meaning, while alleviating depressive symptoms and improving quality of life. Legacy building and the reflection it entails, “may constitute a true rite of passage, a process of transcendence in which life, even at the edge of death, continues to hold value and direction” [24].

The loss of dignity is closely associated with depression, anxiety, hopelessness, loss of will to live, desire for death, feelings of being a burden to others and diminished quality of life. Accordingly, legacy-building interventions are often linked to a “sense of symbolic immortality” [6], and to the conviction that “contemplating one’s own mortality may, in fact, enrich life” [25], while also proving relevant to “reducing anxiety and depression” [8].

Nevertheless, the practice of legacy building continues to face significant challenges. The literature points to considerable methodological heterogeneity, theoretical gaps in understanding the phenomenon and limited cultural integration across diverse clinical contexts [26, 24]. Organizational and ethical barriers to systematic implementation also persist, including the need for professional training, time availability and institutional commitment to personalized care [23, 18, 26]. Moreover, it must be recognized that not all patients wish, or are able, to engage in structured legacy building, making it “essential to respect each individual’s uniqueness and freedom in this process” [22].

This systematic review sought to map and organize knowledge in this field by identifying existing strategies, the most frequently used types of legacy and their impact on families/caregivers and care teams. The evidence suggests that these interventions, by enhancing dignity, strengthening purpose and meaning, reducing anxiety and depression, fostering inner peace and acceptance of death, enabling reconciliation with one’s life story, supporting personal validation, reinforcing continuity and generativity, promoting a sense of control and autonomy and offering the feeling of being heard, contribute to a more serene dying process. In addition, they support family bereavement and “benefit those who will grieve the loss” [10]. As Chochinov notes, “the creation of a legacy document may be a welcome opportunity for anyone who wishes to enhance meaning, purpose, or well-being in their final days of life” [27-29].

In conclusion, legacy building in palliative and end-of-life care is not merely a clinical intervention but a form of holistic care one that promotes dignity, honors personal narratives and strengthens the relational bonds that define us as human beings.

Funding

The author(s) received no financial support for the research, authorship and/or publication of this article.

Author Contributions

The first author (Antonino Sousa) developed the study conception, data collection and analysis, drafted the initial manuscript and carried out subsequent revisions. The first two authors (Antonino Sousa and Rita Pessoa) participated in article selection, data collection and analysis. The last author (Manuel Capelas) supervised the process.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Clinical Trial Number

Not applicable.

Ethics, Consent to Participate, and Consent to Publish Declarations

Not applicable.

Conclusions

The findings of this systematic review demonstrate that legacy is an area of growing empirical interest, both for patients and for their caregivers and/or family members, in the context of palliative and end-of-life care. Legacy building emerges as a highly valuable therapeutic practice, enabling patients to express memories, values and affections, thereby affirming their identity and dignity even in the face of death. Through interventions such as Dignity Therapy, Generativity Documents, Life Review, Legacy Projects, artistic interventions, or Legacy Documents, patients are able to find meaning, purpose and reconciliation, while also fostering family cohesion and future continuity (generativity).

Studies indicate significant benefits at the emotional, spiritual and relational levels, with positive impacts on both patients and their family members and/or caregivers. Despite the ethical and methodological challenges that remain, legacy building has been shown to transform suffering into testimony and finitude into shared meaning. With appropriate adaptations according to developmental stage and clinical situation and by taking into account the specific needs of each patient, legacy interventions may serve as a valuable tool to foster adaptation and support coping with illness, hospitalization, or the final stage of life.

In short, this is a form of care that transcends medicine, grounded in attentive listening, compassion and the memory (identity) of the person. It is essential that healthcare professionals recognize the opportunities for connection, self-expression and community strengthening offered by these interventions, integrating them within a patient and family centered biopsychosocial approach. The impact of this therapeutic practice on healthcare professionals and care teams is also noteworthy, particularly in strengthening empathic relationships, enhancing professional satisfaction, fostering person-centered care, deepening understanding of patients’ spiritual, emotional and existential needs and facilitating communication.

This review has also helped to identify criteria for the development of legacy-building practices and for transferring knowledge to healthcare professionals working in PC. This approach not only enables the identification of existing interventions, but also facilitates an understanding of how they have been applied, with what objectives, in which contexts, with what outcomes and with what ethical implications.

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