Individual legacy has been broadly defined as what one leaves behind after death, making a lasting impression, leaving a mark on the world, personally contributing to the future, or leaving a portion of oneself (Kearl, Reference Kearl1989; Newton et al., Reference Newton, Herr and Pollack2014). Though legacy is often thought of in a material context, these definitions expand the potential for a legacy to be more than wealth or possessions. Legacy can be shared beyond material forms, including biological legacy (genetics and health) and a legacy of values (faith and culture) (Hunter and Rowles, Reference Hunter and Rowles2005). When planning for the end of life, older adults view values and life lessons as the most important things to pass on through a legacy to loved ones (Merrill and Age Wave, 2019). However, planning for the end of life has traditionally been viewed as a very formal process that involves creating legal documents designed to bequeath material possessions or convey the individual's treatment care preferences (e.g., last will and testament or living will). While these processes are very practical, the resulting documents are filled with legalese and often lack personal expression. Many individuals are now wanting to supplement their legal wishes with nonbinding expressions of values, guidance, and love for the recipients. This legacy of values can be written through documents such as a legacy letter or an ethical will. An ethical will is a formal method of documenting a legacy of values usually signifying a moral, rather than material, legacy (Hicks, Reference Hicks2008; Stanton and Peyser, Reference Stanton and Peyser2010). Ethical wills are completed by the individual rather than an attorney and are meant to be shared with family, friends, or the community (Martin, Reference Martin2015). They provide a way for individuals to reflect about the life they have lived, the meaning that they have derived from it, and the significance of their life experiences and pass on an intangible, rather than material, legacy to future generations.
Ethical wills have been utilized for centuries. There are multiple examples in the Christian Bible of ethical wills being left by leaders (e.g., Moses and Joshua) to the people of Israel on how to follow God's commands (Deuteronomy 33, Joshua 23) and by fathers (e.g., Jacob, David, and the writer of Proverbs) to instruct their children on how to live (Genesis 49, 1 Kings 2, Proverbs). In medieval times, ethical wills were documented by Christians and Muslims (Keeva, Reference Keeva2005). In the Jewish tradition, ethical wills are letters written from parents to children; individuals may choose to leave an ethical will to share the way they have lived and hope future generations will live, pass on what they do not want to be forgotten, ask for forgiveness, leave something special behind for friends or family, and so forth (The Jewish Theological Seminary, n.d.). While ethical wills were originally passed down orally from one generation to another, the modern ethical will can take many forms (e.g., letters, audio-visual formats) (Gessert et al., Reference Gessert, Baines and Kuross2004; Hicks, Reference Hicks2008; The Jewish Theological Seminary, n.d.). Current literature documenting the use of ethical wills comes from heterogeneous sources across multiple disciplines including law, estate planning, religion, and Jewish rabbinic tradition and uses a variety of terms including “ethical will,” “legacy statement,” “spiritual legacy,” and “ethical capital” (Hicks, Reference Hicks2008; Williams et al., Reference Williams, Woodby and Drentea2010; The Jewish Theological Seminary, n.d.). Thus, there is a lack of consistent terminology and conceptual parameters that ascertain the context and outcomes of creating and transmitting an ethical will, which may depend on the individual's life, health, and relational circumstances.
Significance
The importance of individuals communicating a legacy of values, through documents such as an ethical will, has been discussed in the literature for more than 20 years as a way to pass on what matters most (Kivnick, Reference Kivnick1996; Sapp, Reference Sapp1996; Meuser et al., Reference Meuser, Mthembu and Overton2019). Current palliative care practice guidelines underscore the importance of clinical providers being aware of their patients’ existential concerns and highlight the need to identify interventions clinicians can employ that help patients address their mortality and process these concerns as they navigate the end of life (National Consensus Project for Quality Palliative Care, 2018). Though several legacy-creation interventions have been researched among patients with a life-limiting illness or receiving palliative care or hospice as a way to foster meaning-based coping, quality of life, dignity, and end-of-life preparation and completion (Chochinov et al., Reference Chochinov, Hack and Hassard2005; Allen et al., Reference Allen, Hilgeman and Ege2008; Steinhauser et al., Reference Steinhauser, Alexander and Byock2008; Akard et al., Reference Akard, Dietrich and Friedman2015), there is very little research on creating a legacy of values in a self-directed manner. While ethical wills are recognized and utilized in the lay community as a way to create a legacy of values, ethical will research in health, social, or behavioral sciences is sparse. The lack of supportive evidence prevents providers in the clinical setting from recommending ethical will completion to patients as they age and anticipate the end of life.
Purpose
To address this research gap and add conceptual clarity, the aim of this scoping review is to categorize the terms used to define how “ethical will” is operationalized within the literature and map the conceptual boundaries of ethical wills, including uses and outcomes. The primary research question is: How are ethical wills utilized and operationalized across disciplines? Secondary research questions include: What terms are being used to describe ethical wills? and How, by whom, and for what purposes are ethical wills created and employed?
Conducting a scoping review is appropriate in this context as the working definition of ethical wills is vague and a comprehensive review on the topic has not been conducted (Peters et al., Reference Peters, Godfrey and Khalil2015). Scoping reviews can clearly and rigorously map the state of the research (Arksey and O'Malley, Reference Arksey and O'Malley2005). A scoping review is necessary to survey the breadth of published information available to define and clarify the role of ethical wills and to map their purpose and outcomes across disciplines, which will inform the scientific literature and provide a platform for expanded research. No scoping or systematic reviews on this topic were identified by our team in the CINAHL, PubMed, Scopus, or Cochrane Library databases.
Methods
We conducted the scoping review with guidance from The Joanna Briggs Institute (2015) using Arksey's five stages: (1) identifying the research question, (2) identifying relevant studies, (3) study selection, (4) charting the data, and (5) collating, summarizing, and reporting the results (Arksey and O'Malley, Reference Arksey and O'Malley2005; Peters et al., Reference Peters, Godfrey and Khalil2015; The Joanna Briggs Institute, 2015). An unpublished a priori protocol was completed in November 2019. To ensure transparency and reproducibility, we followed the PRISMA-ScR reporting guideline, Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews (Tricco et al., Reference Tricco, Lillie and Zarin2018). We used EndNote X9 (Clarivate Analytics) to manage citations and remove duplicates. Covidence (Veritas Health Innovation), an online systematic reviewing platform, was used to screen and select articles. In line with scoping review methodology, no quality assessment of selected articles was conducted (Arksey and O'Malley, Reference Arksey and O'Malley2005; Peters et al., Reference Peters, Godfrey and Khalil2015). We are using the terms articles or publications for our included “studies” to more accurately reflect the pool of publications which met our inclusion criteria.
Literature search
Searches were developed by the information specialist on our team (MMM) and peer-reviewed with the Peer Review of Electronic Search Strategies (PRESS) guidelines by library colleagues (McGowan et al., Reference McGowan, Sampson and Salzwedel2016). We conducted a two-phased literature search. In the first phase, conducted in November 2019, we searched a few priority databases, Medline, CINAHL, and Embase, to screen results for additional terms synonymous with “ethical will.” The second phase, conducted in January 2020, built upon the first and included those additional terms in the fuller search for all databases. Finally, we repeated the second-phase search in January 2021 to identify any additional literature published since the last search. The database searches did not filter date, language, or publication type. Sensitive search strategies were composed primarily of keyword phrases harvested for ethical wills through preliminary literature searches and the first phase of the systematic search. Search terms included “ethical will,” “legacy statement,” “ethical capital,” and “spiritual legacy.” Database subject headings were utilized when appropriate. See Supplementary material for search histories. As the focus of the review is on ethical wills, we did not include search terms to identify legacy interventions. In total, we searched 14 databases: Medline (Ovid), Embase (embase.com), CINAHL Complete (Ebscohost), Cochrane Library (wiley.com), including CENTRAL (wiley.com), Academic Search Ultimate (Ebscohost), Business Source Premier (Ebscohost), Dissertations & Theses Global (ProQuest), PsycINFO (Ebscohost), Religion & Philosophy Collection (Ebscohost), Scopus (scopus.org), Sociological Abstracts (ProQuest), HeinOnline (heinonline.org), Legal Collection (Ebscohost), and Web of Science Core Collection (Clarivate Analytics).
Study selection
Two reviewers (SAN, GLT) independently screened the results by title/abstract and then full text. The reviewers discussed any conflicts during the team meetings. A third reviewer (LSE) on the team was available if consensus could not be reached with the two reviewers; all conflicts were resolved by the first two reviewers.
Inclusion criteria
Our inclusion criteria were modeled on The Joanna Briggs Institute's research question elements of participants, concept, and context (The Joanna Briggs Institute, 2015). Participants included anyone creating an ethical will with the purpose of sharing with recipients (e.g., family, friends, community) before or after the creator's death. Family was defined as “any person(s) who plays a significant role in an individual's life. This may include a person(s) not legally related to the individual” (The Human Rights Campaign, 2019). The concept of ethical will was defined as a nonlegal expression of values, guidance, or love as a way for individuals to pass on an intangible rather than material legacy to the next generation, regardless of how imminent their death is. We included a global context of ethical will creation within published literature written in English encompassing multiple formats (written, audio, or visual). As this scoping review focused on the breadth of literature within a variety of disciplines, publications were included from lay and scientific literatures, as well as qualitative and quantitative research studies.
Exclusion criteria
We excluded publications if they focused on a standard legal will or used the words “ethical” and “will” in succession outside of the context of our definition (e.g., “issues that are ethical will be discussed”), legacy documents created by a surrogate (e.g., parent, caregiver, obituary, memoir, etc.), or documents completed solely for the benefit of the creator without clearly addressing intent to share or communicate with others through oral or written means (e.g., life review interventions). We also excluded books, conference abstracts without additional publication information, and articles that briefly mentioned ethical wills as an option for clients to create without providing definition of concept or use. Publications of interventions with a legacy component or that solely referenced the concept of legacy in theoretical or developmental discussion without identifying a means or importance of sharing it were excluded.
Data extraction and charting
The first author extracted the data from the included publications and discussed extraction findings with the senior author (GLT) in team meetings. The outline for charting data extraction is found in Table 1. Extracted data were analyzed and sorted into categories of like terms describing the content, audience, format, purpose, and outcomes of ethical will creation. The categories were further analyzed across the data to identify central elements of ethical wills.
Outline for data extraction: planned versus final data extraction
Note. Only six research articles were identified in the included articles. As such, extraction criteria including study population, age, measurement, and key findings were not applicable or insufficient for the majority of the final extracted publications. Though we intended to identify the motive of creation based on a framework of end-of-life preparation identified in the literature (Emanuel et al., Reference Emanuel, Bennett and Richardson2007; Gawande, Reference Gawande2014), there was insufficient evidence to chart this information. To avoid speculation, motivation was excluded from the final extraction criteria. The final extraction table was simplified to only include the criteria applicable to the majority of included publications.
The reported percentages for the categories were tallied by adding the number of times the terms were referenced across the articles, then dividing by the total number of references in each category; therefore, the results are reported at the category level rather than at the article level unless specified. For example, within the content category, there were 100 references to values, beliefs, and principles out of the 376 total references to content.
Results
The literature search resulted in 1,948 articles, as outlined in the PRISMA diagram (Figure 1). After removing 429 duplicates, 1,328 were excluded at the title and abstract level, and 140 were excluded during full-text review. Of these, a total of 51 articles related to ethical wills were included in the data extraction and are presented in the extraction table (see Table 2). The research team included one conference abstract (Wynn and de Vries, Reference Wynn and de Vries2005) as we had personal communication with the senior author to obtain the results from the conference presentation. All extracted articles were published in the US between 1997 and 2020 across diverse disciplines. The majority of the articles (47.1%, n = 24) were published within law, estate, and financial planning. Additional disciplines included religion/ministry (9.8%, n = 5), gerontology/long-term care (9.8%, n = 5), medicine (7.8%, n = 4), psychology/sociology (7.8%, n = 4), general public (7.8%, n = 4), nursing (5.8%, n = 3), and business (3.9%, n = 2). We identified six research publications (11.8%) related to ethical wills (Barnes et al., Reference Barnes, Taylor-Brown and Wiener1997; Gessert et al., Reference Gessert, Baines and Kuross2004; Wynn and de Vries, Reference Wynn and de Vries2005; Cohen-Mansfield et al., Reference Cohen-Mansfield, Regier and Peyser2009; Williams et al., Reference Williams, Woodby and Drentea2010; Grewe, Reference Grewe2017).
PRISMA flowchart outlining literature search.
Ethical will data extraction table
Defining ethical wills
Ninety-four percent (n = 48) of the articles used the term ethical will alone or in addition to other terms for legacy of values. Twelve percent (n = 6) of the articles also used the term legacy letter, the second most frequently used term; 6% (n = 3) of the articles only used an alternative term (e.g., ethical capital, personal legacy declaration, and legacy video). We identified 84 different words or phrases used to define ethical will content, which were organized into six categories of like terms. The percentage of each category is presented in Figure 2. The most common terms used to describe the content included in ethical wills related to (1) values, beliefs, and principles and (2) life lessons, wisdom, and experiences, which combined accounted for more than half of the terms used to describe the content included in ethical wills. The least common terms used to describe ethical will content included personal characteristics, personality traits, and quirks. In addition, we identified terms used to describe how an ethical will is differentiated from a legal will; 47% (n = 24) of the articles referenced the nonlegal nature of ethical wills, and 37% (n = 19) referenced bequeathing intangible or nonmaterial information rather than possessions.
The 84 unique terms describing ethical will content were grouped into like categories. The percentage for each category was calculated by tallying the number of times the terms were used and dividing by the total term count (n = 376).
Audience and format
Of the 78 references of terms describing the intended audience of an ethical will, 49.4% (n = 38) were biological family. Other recipients included younger or future generations (19.2%, n = 15), friends (10.3%, n = 8), community (10.3%, n = 8), loved ones (5.1%, n = 4), heirs or recipients of a legal will (2.6%, n = 2), and others (3.8%, n = 3). There was no set format for creation (e.g., medium or outline of questions that need to be addressed) identified in the articles. Of the 90 references to format, the most commonly cited format was written (e.g., letter or handwritten; 57.8%, n = 52). Other categories used to describe common formats included digital or video (17.8%, n = 16), creative arts (e.g., photos, songs, drawings, paintings; 12.2%, n = 11), oral or audio (10%, n = 9), and others (2.2%, n = 2).
Purpose of creating an ethical will
Many unique purposes of ethical will creation were identified (n = 175 references). The most common purposes were categorized as a way to be remembered, to preserve, or pass on an intangible legacy (26.3%, n = 46), communicate to others (e.g., exhortation, forgiveness, blessings; 23.4%, n = 41), cope with transitions or mortality (13.7%, n = 24), compliment the legal or estate planning process (11.4%, n = 20), address failures, barriers, and conflicts (10.9%, n = 19), clarify the writer's meaning and purpose in life (8.6%, n = 15), and foster intergenerational connection (5.7%, n = 10).
Potential outcomes
One of the initial aims of the review was to identify the validated outcomes of completing an ethical will. Though the literature included few validated outcomes, we identified many potential outcomes of completion that were not necessarily researched or measured (n = 93 references). We grouped the terms describing potential outcomes into the categories of self-growth, personal satisfaction, and transformation (25%, n = 23), comfort for self and others (18.5%, n = 17), connection with others (16.3%), gift for the writer and recipient (14.1%, n = 13), developing acceptance of mortality or a sense of life completion (13.0%, n = 12), achieving symbolic immortality or transcendence (9.8%, n = 9), and others (3.3%, n = 3).
When and how to create and share
Multiple articles noted that ethical wills are often created during or around a transition or milestone for the writer (e.g., birth of a child or grandchild, wedding, retirement, anticipating the end of life) (Baines, Reference Baines2003; Pagano, Reference Pagano2006; Williams et al., Reference Williams, Woodby and Drentea2010; Kaslow and Benjamin, Reference Kaslow and Benjamin2015; Martin, Reference Martin2015; Ziff, Reference Ziff2016; Tugend, Reference Tugend2020). Only 53% (n = 27) of the articles mentioned the timing of when to share the ethical will; of these, 63% recommended sharing while alive and 37% noted that writers may wish to share after death. Ethical wills do not need to be completed with a facilitator or guide, though they may help the creator get started or act as a sounding board for life reflection. Several articles warned that the ethical will could be potentially damaging for recipients if written to be punitive or as a weapon of control or retaliation and cautioned writers to avoid using the ethical will as a way to rule from the grave (Kahn, Reference Kahn2001; Alexander, Reference Alexander2006; Vizzard, Reference Vizzard2012; Gustke, Reference Gustke2014). Ethical wills are not the place to rehash family feuds or work out family conflict and should be written in a kind tone, especially if shared after the writer's death when there is no longer an opportunity to facilitate discussion (Lynch, Reference Lynch2008; Vizzard, Reference Vizzard2012; Federer, Reference Federer2013).
While writing an ethical will is a powerful exercise, it is not recommended or beneficial for everyone. One article (Kaslow and Benjamin, Reference Kaslow and Benjamin2015) addressed reasons individuals might not want to complete an ethical will, such as being uncomfortable expressing subjective and emotional feelings in documents that are traditionally distant and couched in legalese or perceiving writing the ethical will as daunting or frightening. Kaslow and Benjamin (Reference Kaslow and Benjamin2015) also stated that ethical wills should not be created if the writer fears rejection or backlash from sharing with others or is too ill to deal with recipients’ reactions. Additional barriers to completion included feelings of self-doubt or inadequacy (Baines, Reference Baines1999).
Discussion
For this review, we mapped the evidence of ethical will utilization and operationalization across disciplines by charting the terms used to describe ethical will content and detailing the intended audience, format, purposes, and potential outcomes of creating an ethical will. Based on the extracted terms from the included studies, an ethical will is defined as a nonlegal way to express values, beliefs, life lessons and experiences, wisdom, love, history, hope for the future, blessings, apology, or forgiveness using any format (e.g., text, audio, video) that is meant to be shared with family, friends, or community. This composite definition confirms yet expands the definition used in the a priori search criteria. We only extracted six research publications, indicating that the lay community may be more familiar with ethical wills than the research community.
Ethical will creation and generativity
One common theme appeared in our extracted data: an ethical will is intended as a way of sharing one's life for the sake of another — a distillation of oneself, experiences, and lessons learned to benefit someone else. It should not be controlling but is meant to be an influential document which can be used by the recipients as a form of guidance to help them navigate the rest of their lives. It can also foster intergenerational connection (Baines, Reference Baines2003; Alexander, Reference Alexander2006; Shultz, Reference Shultz2006; Gaudiani, Reference Gaudiani2007; Cohen-Mansfield et al., Reference Cohen-Mansfield, Regier and Peyser2009; Kaslow and Benjamin, Reference Kaslow and Benjamin2015). Thus, generativity is a central component of ethical will creation. Generativity is linked with the desire for immortality and is described as a developmental stage that involves contributing to the next generation, living intentionally, and planning to construct one's legacy that has been studied across mid-to-late adulthood (McAdams and de St Aubin, Reference McAdams and de St Aubin1992; Maxfield et al., Reference Maxfield, Greenberg and Pyszczynski2014). It has been identified among older adults as a coping mechanism to address awareness of mortality and buffer existential anxiety (Maxfield et al., Reference Maxfield, Greenberg and Pyszczynski2014). Furthermore, generativity contributes to the sense of life completion and addresses a primary need of individuals nearing the end of life through guidance, instruction, or finalizing a legacy (Steinhauser et al., Reference Steinhauser, Clipp and McNeilly2000, Reference Steinhauser, Bosworth and Clipp2002; Kehl, Reference Kehl2006; Emanuel et al., Reference Emanuel, Bennett and Richardson2007; Gawande, Reference Gawande2014).
A related purpose in creating an ethical will is to be remembered or preserve what was most important to the writer. This desire for preservation can lead to the outcome of symbolic immortality, which is a way for individuals to live on in the minds of others after their death and is a way to address existential concerns (Lifton, Reference Lifton1979; Newton and Jones, Reference Newton and Jones2016). Creating and sharing an ethical will is an intentional way to be remembered and provide an enduring link connecting generations, which may offer writers a sense of transcending death or remaining connected to those left behind (Barnes et al., Reference Barnes, Taylor-Brown and Wiener1997; Gessert et al., Reference Gessert, Baines and Kuross2004; Cohen-Mansfield et al., Reference Cohen-Mansfield, Regier and Peyser2009; Kaslow and Benjamin, Reference Kaslow and Benjamin2015). Receiving a letter from a loved one after death can modify the grief experience for survivors and provide family members and caregivers with a sense of consolation, solace, feeling the presence of the loved one with them, and encouragement in the midst of loss (Hicks, Reference Hicks2008; Martin, Reference Martin2015).
The process of creating an ethical will is also beneficial to the writer (Gaudiani, Reference Gaudiani2007; Cohen-Mansfield et al., Reference Cohen-Mansfield, Regier and Peyser2009; Falkner, Reference Falkner2009; Streit, Reference Streit2012). An ethical will may be used as a way to address mortality, clarify life's meaning, communicate what matters most, or supplement formal end-of-life planning documents. Telling one's personal and family stories helps make sense of life experiences and has the power to shape meaning and deepen family relationships (Thompson et al., Reference Thompson, Kellas and Soliz2009; Meuser et al., Reference Meuser, Mthembu and Overton2019). Creating an ethical will can offer the writer an opportunity to learn about themself, provide a sense of growth and meaning, and leave part of themself behind for others.
Facilitating end-of-life preparation
Additionally, creating an ethical will can help facilitate end-of-life preparation for patients. A new paradigm has emerged in end-of-life care which seeks to not only provide excellent patient care in the final days but also promote “a good life to the very end” (Gawande, Reference Gawande2014, p. 245). Current palliative care practice guidelines recommend the interdisciplinary care team be prepared to assess patients’ existential concerns as they navigate chronic illness and prepare for the end of life and address any unmet needs (National Consensus Project for Quality Palliative Care, 2018). Comprehensive palliative assessment explores the patient's spiritual and existential views of their meaning and purpose in life, spiritual beliefs and practices, relationships, concerns or fears of quality of life or death and dying, and life completion tasks (National Consensus Project for Quality Palliative Care, 2018), which could be addressed through ethical will creation. Through this review, we identified 14 articles that discussed using the ethical will to address mortality or attitudes about death, which indicate that reflecting on meaning in life and articulating values may provide the writer a sense of life completion (Barnes et al., Reference Barnes, Taylor-Brown and Wiener1997; Wheeler and Farnsworth, Reference Wheeler and Farnsworth2000; Baines, Reference Baines2003, Reference Baines2004; Cole and Kloberdanz, Reference Cole and Kloberdanz2003; Frank, Reference Frank2003; Gessert et al., Reference Gessert, Baines and Kuross2004; Alexander, Reference Alexander2006; Shultz, Reference Shultz2006; Hicks, Reference Hicks2008; Falkner, Reference Falkner2009; Williams et al., Reference Williams, Woodby and Drentea2010; Martin, Reference Martin2015; Grewe, Reference Grewe2017). The Dying in America report recommends patients, families, and providers prepare for death by having conversations throughout the life cycle, not just near the end of life (Pizzo, Reference Pizzo2016). As the ability to plan and communicate effectively in the final days is not a guarantee, it is beneficial for individuals to begin planning for the end of life once they have an awareness of their mortality, which often occurs through the process of aging (Doka, Reference Doka2015).
Differences in ethical wills and interventions with a legacy component
In our search, we excluded 27 articles that related conceptually to leaving a legacy or legacy interventions as they were not specifically about creating an ethical will or legacy of values, and we did not specifically search for interventions. However, we separately reviewed these articles and discuss them here to provide a comparison to ethical will creation. The excluded articles discussed the concept of legacy in a broad context (n = 16) (e.g., qualitative studies examining legacy in the context of family, understanding older adults’ perspective of legacy) or interventions with a legacy component (n = 11). The interventions were primarily based upon reminiscence and life review therapy, and 73% (n = 8) were conducted among patients with a terminal illness.
Ethical wills differ from other closely aligned methods of preserving self, including reminiscence, life review therapy, and Dignity Therapy (Chochinov et al., Reference Chochinov, Hack and Hassard2005) in three fundamental ways. First, though they all share a component of reflection and self-evaluation of life experiences, a key attribute of ethical will creation is the intent to transmit information to survivors to help them live more fulfilling lives (Gessert et al., Reference Gessert, Baines and Kuross2004; Stanton and Peyser, Reference Stanton and Peyser2010). Writers of ethical wills communicate how they want to be remembered, personal history, and content to benefit others (e.g., values, beliefs, guidance, traditions, life lessons learned), which promotes generativity. All of the ethical will articles (n = 51) identified in this scoping review discussed sharing, transmitting, or communicating to recipients or survivors, and 84.3% (n = 43) specifically identified the intended audience for the legacy document. This is unlike articles that discussed legacy conceptually without creating a legacy document (Schultz-Krohn, Reference Schultz-Krohn2002; Morgan, Reference Morgan2003; Hunter and Rowles, Reference Hunter and Rowles2005; Hunter, Reference Hunter2007; Manoogian et al., Reference Manoogian, Walker and Richards2007; Meuser et al., Reference Meuser, Mthembu and Overton2018) or legacy interventions used for individual or group therapy that can be optionally shared with others (Barber, Reference Barber2008; Ho et al., Reference Ho, Leung and Tse2013; Allen et al., Reference Allen, Harris and Burgio2014; Franklin and Cheung, Reference Franklin and Cheung2017; Robinson and Murphy-Nugen, Reference Robinson and Murphy-Nugen2018). Second, the timeline for ethical will creation is broader than the final days, which provides individuals the opportunity for reflection and revision over time. Within the excluded legacy intervention articles (n = 11), 73% (n = 8) were conducted with patients with a terminal illness. However, only 27% (n = 14) of the ethical will articles discussed using ethical wills to address mortality or attitudes about death, suggesting ethical wills may be appropriate for patients early in their palliative care journey. Third, ethical will creation is a self-directed exercise anyone can complete independently without assistance from a trained member of the healthcare team or a specific number of sessions, making it accessible to a wide audience with a flexible timeline of completion. The process of writing an ethical will is not a prescriptive intervention and may be unstructured or prompted by questions to allow the creator to write from the heart (Baines, Reference Baines2003).
Limitations and strengths
Limitations
The results of this scoping review should be considered in light of several limitations. In accordance with scoping review methodology, we did not formally review the methodological quality of the included sources; thus implications for practice may be limited (Arksey and O'Malley, Reference Arksey and O'Malley2005). However, these results can be used to inform continued research on leaving a legacy of values (The Joanna Briggs Institute, 2015). Because of the multiple terminologies used for the concept of ethical wills, our review may have missed relevant studies. Notably, 31/51 (61%) of the articles cited the work of Dr. Barry Baines, a board-certified family, hospice and palliative medicine physician and expert on ethical wills who has been influential in popularizing awareness of ethical will creation through his foundational writings, workshops, and trainings for individuals in the community. This likely led to redundancy in the terms used to describe and define ethical wills. Including books and conference abstracts in the analysis may have identified additional authors; nevertheless, we were able to identify a breadth of purposes and outcomes by including articles across disciplines. These findings highlight the need for continued research to expand the knowledge base of ethical will utilization and outcomes.
Strengths
To our knowledge, this is the first scoping review conducted to explore the utilization of ethical wills across disciplines as a way to communicate a legacy of values. It was guided by an a priori protocol reviewed by an expert in conducting scoping reviews (available upon request) and included a broad literature search across 14 databases. Results were presented according to the PRISMA-ScR guidelines to reduce bias and enhance transparency and reproducibility. As there were no limits on document type or date of publication, the review includes publications from a broad array of disciplines and intended audiences.
Implications for palliative care practice and research
The Institute of Medicine recognizes the need for improvement in end-of-life care, including increasing clinicians’ awareness that patients and families may have existential and spiritual concerns in addition to the need for clinical care (Institute of Medicine, 2015). Ethical wills have been proposed as a way for clinicians to positively influence end-of-life planning and discussions through holistically addressing the needs of patients (Baines, Reference Baines2003; Brown, Reference Brown2007; Cohen-Mansfield et al., Reference Cohen-Mansfield, Regier and Peyser2009; Martin, Reference Martin2015) recommends clinicians (1) be educated on the value of leaving a legacy and the impact communicating it can have on patients and their families and (2) participate in self-reflection about their own legacy in order to be able to discuss ethical will creation with patients. The fact that ethical will creation does not need to be facilitated by a trained professional expands the opportunity for it to be used in a number of scenarios and increases access for its use among the broader population, not only to patients nearing the end of life. More research is needed to understand the similarities and differences in psychotherapy interventions that are delivered by trained individuals compared to the experiences of those who complete an ethical will in the community setting. Similarly, comparing the experiences of individuals who create an ethical will near the end of life versus throughout the life course would identify if there is an optimal timepoint of creation that is most beneficial to individuals.
Interest in research examining ways to enrich the lives of patients anticipating the end of life continues to expand beyond relief of physical symptoms to incorporate psychological symptoms as well (Bernard et al., Reference Bernard, Strasser and Gamondi2017; National Consensus Project for Quality Palliative Care, 2018). Given the dearth of research on ethical wills, future research validating outcomes of ethical will creation would inform and hold promise for utilization and promotion of ethical wills in the clinical setting. Research exploring individuals’ motivations for creating ethical wills would help identify the population best suited for ethical will creation and optimal contexts or timing of completion. Finally, future research can build upon the findings of this review to explore the intergenerational and family effects of sharing an ethical will on mental health, perceived family closeness, and the bereavement process.
Conclusion
Our scoping review results indicate that creating an ethical will is a way for individuals to address mortality, renew intergenerational connections, solidify self, and promote transcendence before their final days. Many disciplines promote legacy of values creation, including law, health and social sciences, business and finance, and religion, which suggests ethical wills can be incorporated into interdisciplinary care to help individuals achieve their goals. This review provides supportive evidence for ways ethical wills are utilized and a foundation for understanding how they may be incorporated into interdisciplinary palliative care in the future. Ethical will creation holds promise as an intervention palliative care teams can use to promote holistic care and fulfill the recommendation to address the spiritual and existential concerns of patients as they prepare for the end of life.
Supplementary material
The supplementary material for this article can be found at https://doi.org/10.1017/S1478951522000451.
Conflict of interest
We have no known conflicts of interest to disclose.
Open access
