Leaving a Lasting Legacy: A Scoping Review of Ethical Wills

Abstract

Objectives:

Palliative care guidelines recommend an interdisciplinary approach to address patients’ awareness of mortality and need for end-of-life preparation. An ethical will is a non-legal way to address mortality by communicating a lasting and intangible legacy of values to others. The aim of this scoping review is to clarify the operationalization of ethical wills across disciplines and map the purposes and outcomes of creating an ethical will.

Methods:

We followed the Joanna Briggs Institute methodology for scoping reviews. We searched 14 databases in November 2019 and January 2021 without filtering publication date or type. Two reviewers independently screened 1,948 publications. We extracted frequently used terms describing content, audience, format, purpose, and outcomes identified in ethical will creation.

Results:

Fifty-one publications met inclusion criteria. Six (11.7%) were research articles. Twenty-four (47.1%) were lay literature published within law, estate, and financial planning. Collectively, our included studies defined an ethical will as a non-legal 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. The most common purposes were to be remembered, address mortality, clarify life’s meaning, and communicate what matters most. Creation provided opportunity to learn about self, served as a gift to both writer and recipient, and fostered generativity and sense of symbolic immortality.

Significance of Results:

Our findings highlight interdisciplinary utilization and a lack of research of ethical wills. This review provides supportive evidence for ethical wills as a way for patients to address mortality, renew intergenerational connections, solidify self, and promote transcendence before their final days. Ethical wills have potential to be incorporated into interdisciplinary palliative care in the future to address psychological symptoms for patients anticipating the end of life.

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, 1989; Newton et al., 2014). 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 & Rowles, 2005). 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 & 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 non-binding 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, 2008; Stanton & Peyser, 2010). Ethical wills are completed by the individual rather than an attorney and are meant to be shared with family, friends, or the community (Martin, 2015). They provide a way for individuals to reflect about the life they have lived, the meaning 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, 2005). 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., 2004; Hicks, 2008; 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, 2008; The Jewish Theological Seminary, n.d.; Williams et al., 2010). 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 twenty years as a way to pass on what matters most (Kivnick, 1996; Meuser et al., 2019; Sapp, 1996). 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 (Akard et al. 2015; Allen et al., 2008; Chochinov et al., 2005; Steinhauser et al., 2008), 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., 2015). Scoping reviews can clearly and rigorously map the state of the research (Arksey & O’Malley, 2005). 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 & O’Malley, 2005; Peters et al., 2015; 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., 2018). 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 & O’Malley, 2005; Peters et al., 2015). 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., 2016). 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 supplemental file 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 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 non-legal 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), 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.

Table 1.

Outline for Data Extraction: Planned vs. Final Data Extraction

Planned Data Extraction Table (November 2019)	Final Data Extraction Table (April 2021)
Author	Author
Year of Publication	Year of Publication
Origin: Country of origin and discipline	Origin: Discipline
Aims/Purpose	Aims/Purpose
Concept (Definition of ethical will/legacy statement)	Concept (Definition of ethical will/legacy statement)
Medium of documentation: letter, diary, newspaper, video, social media, blog	Medium of documentation: letter, diary, newspaper, video, social media, blog
Outcome of ethical will creation	Outcome of ethical will creation (if identified)
Study population (Age, sample size, inclusion/exclusion criteria)
Motive of ethical will creation   - Transmitting the past  - Settling relationships  - Contributing to next generation  - Declaring final story
Key findings that relate to review question
Non-English publications

Note. Only 6 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 (Gawande, 2014; Emanuel, 2007), 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 & de Vries, 2005) as we had personal communication with the senior author to obtain the results from the conference presentation. All extracted articles were published in the U.S. 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., 1997; Cohen-Mansfield et al., 2009; Gessert et al., 2004; Grewe, 2017; Williams et al., 2010; Wynn & de Vries, 2005).

Figure 1.

PRISMA Flowchart Outlining Literature Search

Table 2.

Ethical Will Data Extraction Table

Author, Year of Publication	Origin: Discipline	Aims/Purpose	Concept (definition of ethical will/legacy statement)	Medium of documentation (letter, diary, newspaper, video, social media blog)	Outcome of ethical will creation
Alexander, 2005	Law/financial planning	Financial planners need expand upon traditional planning to provide clients with values-based planning services. If clients’ values are not expressed and passed on to loved ones, our clients’ planning is incomplete.	A tool to go beyond material wealth to bequeath intangible wealth of values, principles, beliefs, family history and shared experiences to family.	Written	Can raise awareness of the significance of the writer’s life, values that provide definition to life, and importance of sharing and passing down stories and values.
Alexander, 2006	Law/financial planning	Ethical wills can be an important part of client-centered, values-based financial planning to help clients fulfill their life goals, dreams and aspirations and achieve peace of mind through actualizing values that give meaning to life. It can help clients understand that neither money nor property offer a complete definition of wealth.	A non-legal way to share intimate life forming thoughts, experiences, values, beliefs, important life lessons learned, cherished memories, hopes for the future, life’s purpose, love and forgiveness to loved ones. A way to supplement traditional financial, estate, and tax planning to include heritage, personal history, and what matters most to the writer. Recommended to be shared while alive to avoid using it as a weapon from the grave.	Written; letter from the heart	Offers a window into the soul of the writer that recipients will cherish. May help family resolve issues in estate and financial planning.
Alshech, 2008	Religion/politics	Examination of documents (ethical wills, biographies, and eulogies) of Hamas self-immolation attackers (suicide bombings and high risk military attacks). Between the first Palestinian uprising (1987) and the 2nd Palestinian uprising (2000), there was an increase in Hamas editors transforming these documents from personal accounts from the martyr into politically useful reconstructions of the martyr’s life to create a martyrology designed to describe and commemorate the martyrs’ lives and deeds	Ethical will was one document published by Hamas for each of its martyrs. It conveyed the martyr’s moral and ethical advice to their loved ones. Some published examples from the first Palestinian uprising included: courage, unique nature, patriotism, physical fitness, occupation, piety. The ethical wills in the second Palestinian uprising had clearly been drafted or edited by Hamas and emphasized the martyr’s religious devotion and piety, religious education, and desire to attain Paradise.	Document or video	These documents attracted supporters and enabled Hamas to expand its dwindling membership.
Baines, 1999	Financial planning	Explanation of the origins and purpose of an ethical will as well as how to create one.	A way for the writer to bequeath intangible assets of values, life experiences, wisdom, vision to family.	Written; letter	Can be used as a guide for intentional living as it sets the stage for new learning and activities. Provides the financial planner with intimate knowledge of the client’s value system, which can be used in the decision making process of retirement planning.
Baines, 2003	Medicine	Helping clients write an ethical wills is a practical activity home health care professionals can use to help patients and families find meaning near the end of life.	A way to clarify values, and communicate the meaning of life, values, beliefs, heuristic learning, life lessons learned, hopes for the future, love, and forgiveness for family and community who survive.	Written; 3 basic structures or formats are presented. Can also record stories in other ways	Provides the writer a sense of meaning and purpose and gives him or her control over one aspect of the legacy he or she will pass on. Provides a way to live on after death in the hearts of family and friends.
Baines, 2004	Medicine	Patients can leave a spiritual legacy of their values, hopes, and wishes for their family, which physicians can use to tailor their end-of-life care.	A way for patients to create an enduring legacy through communicating a distillation of important values, beliefs, life lessons, messages of love, regret or forgiveness, hopes for the future, with family, friends, and community.	Written	Understanding a patient’s ethical will can influence physicians to provide tailored end-of-life care.
Barnes et al., 1997	Sociology	Mothers with HIV document their legacy through a video intervention; videotapes were analyzed using grounded theory	Legacy video contents included: advice, warnings, explanations, beliefs, affirmation, love, important events, how to carry on, avoid mistakes, secrets/disclosures, expectations	Video	Visual legacies of family history were constructed to help create a future for their children. Mothers created a plan for when children would be shown the video (as children or adults). Through the videotapes, mothers provided continued guidance that transcends death.
Blum & Selby, 2015	Law	Because modern estate planning is beginning to emphasize the importance of a family legacy, estate planners should be able to advise their clients on this topic.	Also called a legacy letter; a substantial way for clients to provide guidance for the future and ideal family values and communicate all the things they want future generations of their family to know. Should be shared while alive to facilitate family discussion.	Written (letter)	Sharing an ethical will is a great way to foster family discussion and ensure everyone is on the same page,
Brown, 2007	Medicine	Introduction of writing an ethical will as a way to enrich your family’s life as well as your financial plan.	A letter that defines your legacy and summarizes your life lessons learned to your legatees, family, and friends; stands in addition to or support of the standard legal will.	Written	There’s a wonderfully therapeutic aspect of writing an ethical will.
Cohen-Mansfield et al., 2009	Long-term care	A pilot study using grounded theory to investigate the values included in the ethical wills of 15 Jewish nursing home residents and 11 student volunteers. Aims were to describe the themes in older persons’ responses to the topics included in ethical wills and compare the values expressed in ethical wills of seniors and students.	Documents in which people look back through their life and communicate their values, advice, wisdom, and life lessons for the benefit of others. They provide an enduring link between loved ones, a legacy that transcends the writer’s life, and provide opportunity for the writer to give guidance or comfort to the loved ones and friends who will be left behind.	Orally communicated, then transcribed and bound for residents to share.	The ethical will contents identified through grounded theory analysis included: Relationships with others; Society and World Values; Personal Beliefs, Choices, and Life Decisions -Creating an ethical will may offer respondents an opportunity to gain a sense of peace through processing emotions and experiences Ethical wills can promote intergenerational interaction, help older persons address difficulties associated with aging by having their voices heard, and provide a positive component to end-of-life preparations (e.g., advance directives).
Cole & Kloberdanz, 2003	General public	Ethical wills are becoming popular among Baby Boomers who are contemplating their mortality; introduction to an ethical will.	Sometimes called a personal legacy, is a detailed accounting of the values and beliefs and individual wants to pass on and the memories they do not want forgotten. May be shared while alive to facilitate communication or shared after death.	Written	Intended to impart wisdom to heirs; writers often find immediate benefits for themselves, including growth through the challenging experience sharing your human weaknesses.
Colgan, 2008	Estate planning	A good estate plan must address more than a client’s material assets. Consider using the Comprehensive Legacy Plan, which includes: 1. a journal of the author’s life, including family, medical hx, instructions on how to raise children, funeral/burial arrangements, organ donation, location of documents, etc., 2. an ethical will, 3. ensures a delivery method.	Non-legal documents that can be used as a precursor to legacy planning. They communicate and preserve family traditions, values, memories, life story, personal matters, thoughts about life, love, and spirituality with generations to come; shared while author is still alive.	Written (letter)	NA
Collins & Shafron, 2014	Law, estate planning	Advising your clients on their digital legacy can be a significant differentiator for your practice.	An ethical will or legacy letter conveys thoughts and beliefs, preserves stories, memories, and advice and can impart life lessons or bestow deep and personal blessings on others.	Written; A videotape of your client reading his legacy letter is more effective and powerful than a written copy; can be rerecorded as necessary. An ethical will on video allows a personal, emotional delivery of the message within a priceless context.	For wealthy clients, a legacy letter can help the next generation become ethical stewards of the family funds.
Falkner, 2009	Law	Examines how ethical wills are used to comfort those left behind. Discusses history and utility among attorneys and estate planners.	A way to leave an intangible legacy by capturing the writer’s philosophies on life, family history, personal story, wisdom, life passions and lesson’s learned, personal quirks, regrets, asking or granting forgiveness, explanation of values system, specific hopes and ideals to share with a family member, friend, or younger generation. -Chance to express feelings that cannot be conveyed through a last will and testament. Ethical wills allow the author to identify what is most valuable in his or her life including friends, family, and certain moral values. In addition, an ethical will allows the author to tell stories from the past that could be lost if not recorded before the author’s death.	Written (documents); Some may compose songs, videos, or other types of multimedia that communicate their values and wishes to their friends and family.	An ethical will can also help the writer as much as the recipient. The process of reflecting on the past and recording the contents enriches the writer’s life, offers a new reason for living, and helps them realize they have a personal legacy to offer. Ethical wills can help attorneys understand the values and interests of their clients thereby personalizing legal services. -They can provide a way for the writer to address their mortality and live on after death and comfort those left behind after death.
Federer, 2013	Financial planning	Having legacy conversations with clients is a priceless service that can strengthen the relationship and role as an advisor.	A document that formally expresses the writers innermost thoughts and feelings to their loved ones that addresses what they want their loved ones to know. Content can include the writer’s history, values, life lessons, main influences, important people or causes, mistakes to avoid, and definition of success; should be shared in a family meeting while alive to facilitate discussion.	Written or another medium	By guiding clients in the process of writing and sharing an ethical will, financial planners can strengthen their client relationships, impact the family’s future, and establish their role in financially serving the next generation.
Frank, 2003	Law	Ethical wills can be a valuable tool for estate planning attorneys who should have a model to assist clients in creating these documents.	Any writing that imparts intangible assets such as personal values, beliefs, lessons, and experiences of the writer or their ancestors to current/future generations and community often while the writer is still alive. The contents may also include vision or hopes and dreams for the future, apologies, love, gratitude, culture, genealogy, life-meaning and traditions.	Written	May help alleviate clients’ anxiety and fear associated their own mortality
Gage et al., 2004	Law	Holistic estate planning focuses on more than the transfer of tangible assets to include intangible assets such as the family legacy, values, and traditions.	A way to leave a family legacy by describing the people, values, life lessons learned, wishes, experiences that have meant the most to the writer. Some writers use it as a tool to make amends or reconnect with estranged family members.	Written	Transferring tangible and intangible assets to the next generation can be a source of meaning in later life.
Gambone, 2003	Ministry	Ethical wills are a way to leave a legacy.	Non-legal, unique document of what the writer believes and why, important personal and spiritual values; hopes and blessings for future generations, life lessons, wisdom, and offers or requests for forgiveness for the next generation; it may be used as an addendum to a regular will.	written	Writing can provide a way to address the fear of becoming insignificant.
Gaudiani, 2007	Law	To help attorneys create a new, deeper kind of trust by providing a way for clients to give birth to future generations through wisdom endowment documents.	Provides a summary of a founder’s life philosophy and can be a good tool; it’s a good first step, but it focuses on the “end time” rather than the “now time” (like financial planning); work of a lifetime.	Written	Often valued as highly as the financial resources left by the older generation. Some family members value it more.
Gessert et al., 2004	Medicine	A prospective randomized controlled pilot study to evaluate the use of ethical wills among oncology patients >65 receiving curative or palliative treatment near the end of life as a means to reduce suffering.	A statement used to preserve and transmit the writer’s values, wisdom, hopes for the future, blessings, life lessons learned, and advice. Provide a window into the soul of the writer. Ethical wills are intended to provide a tangible connection to future generations and leave a legacy for survivors as a physical reminder of the spiritual legacy of their loved one.	Written	Pre-post measures of pain and suffering. Baseline, 42% of subjects reported overall pain that was moderate or severe and 54% reported overall suffering that was moderate or severe. Post intervention: slightly fewer subjects reported moderate or severe overall pain (33%) and many fewer reported moderate or severe overall suffering (25%). The reductions in moderate or severe overall suffering were seen in both the EW and the control arms of the study. Offer the writer transcendence - ability to continue to be part of something larger than themselves that will continue to live on in the future without their physical presence. Writers can make meaning amidst an existential crisis.
Grewe, 2017	Religion	Provide tools (e.g., Soul’s Legacy Program) for chaplains to utilize in addressing the existential issues (i.e., death, isolation, and meaninglessness) that torment many who are dying. Pilot sessions of the program among patients with serious or life-threatening illness were recorded and analyzed using case study analysis (n=35; ages 53-93).	Customization of the term “ethical will,” which can be a confusing and restrictive term. A “soul’s legacy” expands on the concept of ethical wills and is a way to leave a unique and personal blessing for each loved survivor. It communicates love and acceptance, lived experiences, lessons learned, wisdom gained, important stories, and blessings and addresses existential issues near end of life.	Written document or anything that communicates wisdom acquired over a lifetime of living and love for specific individuals	Participation led to a reduction in the number of participants “sad or scared” when considering death; increase in the number who felt “peaceful or good” about their death; and increase in those who found a sense of meaning and those who felt gratitude for their life. The program also contributed to participants learning to receive and give a blessing to deepen relationships with family and friends. Can offer a source of meaning for the patient and aid in the grieving process for the recipient.
Gustke, 2014	General public	Exposure to the concept of ethical wills	Nonlegal, non-binding document that conveys a writer’s deep inner values and beliefs, life lessons, and moral philosophies. A way for the writer to declare “who I am” and what they want their loved ones to know and pass on heartfelt wisdom to future generations. Meant to be enduring.	Written (letters, PowerPoint Videos, DVDs, digital scrapbooks, Facebook pages, iPhone apps	Can help the writer reflect on their life and offer a way to live intentionally. Ethical wills can also help mitigate litigation by providing explanation behind decisions when dispensing family assets.
Hacker, 2010	Law	Lawyers should expose their clients to the option of leaving a will with a soul, be it in their material will or a separate ethical will.	Nonmaterial legacy in which the writer communicates values and beliefs, instruction on how to life worthy and spiritual lives to family members or communities, personal and family stories, burial and familial requests, positive and negative comments about acquaintances, and guidance and hopes for present and future generations	Written Oral (formerly)	Can help avoid legal dispute May help lawyers gain detailed knowledge of their clients’ family circumstances, assets, and wishes
Hicks, 2007	Law, estate planning	Estate planning is not just about the money. Estate planners should make clients aware of ethical wills as a way to provide for the next generation.	Expression of intangible wealth; what the writer wants their loved ones to know; Can contain anything the writer desires; most common themes include exhortations to care for the community;, expressions of love and encouragement to the family, caring for loved ones and pets, statements of faith and beliefs, and gratitude.	Many forms: one letter to the entire family, separate letters to each member of the family, video tape, verbal. Usually letters written to the family and kept with traditional wills.	Increases the writer’s awareness and appreciation of children and fragility of life. Rewards the writer through reflection, renewed sense of self and peace of mind.
Hube, 2005	Law, estate planning	An ethical will can communicate feelings and thoughts that are difficult to impart otherwise; be illuminating for its intended audience and liberating for its author; and can be created at any time, not just near death.	A way to pass intangibles such as values, hopes, family stories or spiritual beliefs to children or other close family members or friends. - Non-legal document that can complement an estate plan. - Interest in ethical wills is increasing due to financial planners and lawyers offering this service to their clients	Many formats; most are written (hand or typed); some involve scrapbooks, photos, letters, DVDs, or family artifacts.	Articulates values, how one want to be remembered, hopes for survivors, and what grandchildren should never forget. Can have as much value for the writer it as it does for the recipient.
Kador, 2014	Financial planning	A guide for estate planners for how to prepare an ethical will as a way to transfer an intangible legacy.	A non-legal heartfelt expression to loved ones to communicate intangible legacy of values, life lessons, what matters most in life, and words of appreciation and encouragement to our family and others. Should be used to in conjunction with estate and financial planning to share motivations of the giver and transfer what valuables can and can’t buy.	Written (letters, narrative) Other formats: printed books, bound albums, audio messages, videotape	By educating clients about the utility of writing an ethical will, advisors can better position themselves to serve their clients and inheritors of the legacy.
Kahn, 2001	Financial planning	Ethical wills are experiencing a resurgence, especially among business owners and entrepreneurs.	Non-legal documents that offer a creative way of passing on experiences, family history, values, entrepreneurial philosophy, and work ethic to the next generation; may be used in conjunction with estate planning for businesses. A legacy statement is presented to heirs when a business owner is still alive, while an ethical will is bequeathed after he is deceased. Cost to complete is typically between $1,000 to $10,000.	Written (letter; series of essays)	Spiritually rewarding for the creator. Can diffuse conflicts among heirs. However, children may feel their parents are lecturing them and be unreceptive to advice.
Kaslow & Benjamin, 2015	Psychology	To help therapists, coaches, and family consultants help their clients determine when writing an ethical will is appropriate and what should be included in the document. determine when an ethical will is a vehicle they wish to draw up and then guide them as to what domains of living might be included in this manifesto.	A document in which the writer can share beliefs, values, love, forgiveness, aspirations for the future, and personal life lessons learned with family and community. Additional contents can include wishes, wisdom, philosophic musings, acknowledging mistakes, and asking for forgiveness. Can be created prior to anticipating the end of life during times of life transitions or milestones that prompt reflection.	Written; shared while living through reading aloud with family; some share after death	An ethical will enables the writer to clearly summarize, communicate, and transmit an emotional legacy. Can enable the writer to achieve a sense of fulfillment and closure on important issues and values; may offer transcendence through intergenerational connection through time and space.
Keeva, 2005	Law	Clients are looking for a relationship with their attorneys- why not tell them about an ethical will?	A way to pass down what really matters most to the next generation; a way to acknowledge that legacy is more than material wealth or possessions. A way for clients to express their meaning and purpose, beliefs, personal dreams, and convictions.	Written	Discussing ethical will creation with a client can transform the attorney-client relationship. An ethical will can highlight what really matters to both the writer and recipient.
Langer, 2018	Gerontology	Grandparents are role models for their grandchildren and demonstrate how to live. A legacy letter is a way to share values, blessings, life’s lessons, hopes and dreams for your grandchildren.	Non-legal document that distributes intangible wealth; a heartfelt expression of what truly matters most in the writer’s life; personal message to a younger generation. Articulates what the writer values, how (s)he wants to be remembered, hopes for survivors, and lessons for grandchildren.	Written	Offers the gift of self-reflection to the writer and wisdom to the recipient.
Lynch, 2008	Financial planning	Ethical wills are in vogue because of their power. Instruction letters are in favor because of their practicality. A legacy letter can combine the intangible legacy of an ethical will and the practicality of conveying a tangible legacy through life insurance.	Non-legal, personal documents that bequeath life’s intangible wealth, memories, values, visions, and emotions that will enrich and guide the beneficiaries. Can be shared at any time, though it’s preferable for the writer to share while alive to facilitate conversation regarding clarifications, meanings, explanations, or ambiguities with the recipient.	No mandated formats, often written	Writers gain a deeper appreciation of their lives; satisfaction from expressing themselves, passing on information, beliefs, hopes, and feelings that otherwise would be lost or remain unsaid; and fulfill desire to give something back. Writers have a sense of completion or closure.
Martin, 2015	Nursing	Ethical wills included as a list of advance directives that can address the spiritual domains of care and may be beneficial for persons living with HIV. In order to provide holistic care, clinicians should self-reflect on their comfort level with advance directive documents, including ethical wills to help them discuss them with their clients.	A non-legal, written expression of intangible wealth of values, wisdom, hopes, knowledge, experiences, and advice often written during a time of life transition or by older adults anticipating the end of life. Should be shared with families and communities while the writer is still living.	Written	Ethical will creation may help normalize clients’ HIV disease through documenting and sharing life’s lessons and stories, which can be a means to cope with HIV-related stigma; may help clients address mortality and how they want to be remembered. Considered a meaningful gift for families and communities.
Murphy, 2002	Business	Ethical wills provide a way to offer spiritual wealth and aid estate planning	Whereas legal wills bequeath material wealth, ethical wills dispense emotional and spiritual wealth that goes beyond financial resources. Common topics include values and beliefs, lessons learned, love for survivors, forgiveness, explanations, and anecdotes.	Written, audio, or video	Writers and recipients say the result is an invaluable legacy.
O’Donnell, 2005	General public	Introduction to the concept of an ethical will to the general public	A non-legal way to recount family history, express the way the writer wants to be remembered, and pass on intangible values. Ethical wills are powerful and should be used judiciously.	Written or verbal	Sharing your beliefs and principles helps you live life more deliberately.
Odom, 2012	Estate planning	Ethical will is compared to other forms of personal testimony outside of the Last Will and Testament which may be utilized in estate planning.	Also known as spiritual will; non-legal letter that expresses and transmits personal values of author and is to be applied after death. May include transcendent goals, spiritual values, admonition. Intentionally separate from legal documents.	Written, letter	NA
Pagano, 2006	Estate planning	Leaving a legacy isn’t just about the money	A non-legal way for the writer to express beliefs, share wishes for his or her children and grandchildren, and bequeath values, as well as valuables, to the next generation. Often written during life transitions - birth of a grandchild, weddings/anniversaries. The Ethical will is a part of the larger “Family Love Letter” document that contains information on financial information, insurance and benefits, legal documents and personal information, and family history.	Written: letters, journals Videotapes	Can be a valuable tool to help financial professionals build relationships with their clients.
Parmar, 2005	General public	Lawyers and financial advisers are seeing heightened interest in ethical wills.	Non-legal document that stipulate the general life guidelines writers would like their heirs to follow. Average consultation fee is $350, so forgoing the fee and simply telling your heirs about your values may be a more feasible option.	Written	NA
Raphael, 1999	Religion	Personal account of a Rabbi’s own writing of an ethical will and how he came to revive and teach writing an ethical will to others. Looks at the history of writing ethical wills among the Jews.	Ethical wills provide directions for religious and secular guidance of children; most treasured experiences, personal feelings, and central values to share with loved ones.	Written	Samples of ethical wills written during their workshop are provided.
Rehl, 2003	Law, estate planning	Clients are looking to focus on more than just the physical things and financial assets they have accumulated over her lifetime.	A way to pass on treasures that clients feel are worth far more than material possessions. Many view creating an ethical will as an ongoing process.	Written	Clarifying and communicating the meaning of one’s life is a gift for writer and recipient. In the introspective process of reflection and recording, the writer learns about him- or herself, ponders what he or she is willing to stand for, and enriches his or her own life.
Scroggin, 2003	Estate planning	As personal values have always been part of the estate planning process and the goal is to preserve the family, advisors should help clients do more than create the standard documents.	Non-binding document that can be used to share wisdom, values, life-changing events, life’s choices, successes, and lessons learned; provide family history and heritage; scriptures, poetry, sayings from one generation to the next. Purpose: leave an intangible legacy, personal satisfaction, aid the estate planning process, and provide support and comfort to family	Written; no set format	Can be used to bring comfort and support to families upon the death or incapacity of the client, provide personal satisfaction for the writer, or aid the estate planning process.
Sheridan, 2009	Gerontology	Experience of a writing instructor creating a course to assist older adults to create an ethical will.	A non-material way to pass on life lessons and values; may accompany a legal will; preserves heritage; contains family, personal, spiritual, loving, philosophical, death and future matters. it should be preserved and shared.	Written, photos, drawings, songs, poetry	Can lead to self-healing and psychological maturity
Shultz, 2006	Nursing	Ethical wills transmit one’s heritage, traditions, and values to one’s children and grandchildren. Boomers are embracing ethical wills as a way to put a personal mark on life’s grand finale.	A personal statement to loved ones who are important to the writer. Non-legal; include intangible assets: values, principles, hopes, family stories and histories, explanations for life choices and lessons learned. Jewish history of EW provided. Can create intergenerational connection, add meaning and purpose to the writer’s life, and enrich family relationships.	Written Shared through a video recording of reading of the EW	Writers often learn a lot about themselves and may connect with their own mortality, mistakes, and regrets.
Stanton & Peyser, 2007	Long-term care	Present a how-to guide for facilities wanting to implement the Ethical Will project at their institution.	Ethical wills build upon oral history by not only recalling events but also articulating the lessons learned from these experiences.	Dictated orally and transcribed by a volunteer.	Creating an ethical will can promote community; provides an honest instrument of self-evaluation for the writer
Stanton & Peyser, 2010	Religion	Ethical wills can be used as a way to help young Jewish students recognize their own values in order to foster Jewish leadership.	Statement of values representing a moral, rather than material, legacy to one’s posterity. Conveys aspiring thoughts, dreams, and ideals of the writer Intent is to help recipients lead better, more fulfilling lives.	Orally dictation that was transcribed into a document.	Ethical wills can provide a bridge between personal values that students hold and the ethical teachings core to Judaism and may become centerpieces of Jewish leadership curricula. Writing an ethical will can help the writer understand their own values and help them connect to the broader Jewish values.
Streit, 2012	Estate planning	Conventional estate plans often leave gaps for clients and their heirs; they don’t communicate the “why” behind decisions.	Non-legal documents written to loved ones to communicate values, beliefs, love, and family history. Can be used in conjunction with legal documents to explain the why behind estate decisions and may bring some solace to heirs. Writers do not need to have a big estate to create an ethical will.	Written (typically letters) Video	Can be as meaningful for the writer as it is for the recipient
Tugend, 2020	General public	A legacy letter is a way to communicate values, experiences, and life lessons to your family.	Also called a legacy letter; a document in which the writer communicates values, experiences, personal history, hopes for the future, favorite things, religious and political views, academic and professional life, and life lessons to family. Often written in times of transition or for a milestone.	Written; not long: 1-2 pages	Writing an ethical will aids spiritual suffering for some.
Vizzard, 2012	Nursing	A will doesn’t contain all you need to express to family - use an ethical will to relate personal values or spiritual beliefs, or express affection/ give advice; nurses can also help patients write their ethical will.	A non-material legacy of love for family and friends. Unique way to share lessons learned, wisdom, family history and traditions, humorous stories, or more serious tales of valor and service to others. An ethical will is a safe place for the writer to express himself, leave a message of reconciliation, or offer or request forgiveness. It should not be used to drudge up the past or deliver judgement,	Written	Can be a therapeutic exercise for both nurse and patient by providing a tool to open conversations, enhance the relationship, and address personal issues in difficult times.
Wheeler & Farnsworth, 2000	Law, estate planning	The growing senior market is demanding something more than what the traditional estate planning process provides. Tips for the professional advisor, to create more meaningful personal and professional relationships with clients and their families.	Way to preserve life’s wisdom and harvest the special things clients want to pass on. Can be done through a Personal Legacy Declaration: a written declaration of their personal values, their beliefs and life lessons learned.	Written	Clients come to accept mortality and the need to preserve and pass on a legacy. Effective legacy planning involves honoring the uniqueness of each client, celebrate the life well-lived, and building intergenerational connection for the future.
Williams et al., 2010	Sociology	Secondary data analysis of ways patients of low socioeconomic status with a terminal illness cope with awareness of dying to understand what legacy means to them (n=33). Exploration of ethical capital as a way to preserve dignity in the dying process.	Ethical capital comprises a system of rules for living, derived from the wisdom of elders, lessons learned, navigating everyday life and making meaning of life events; Ethical capital offers an opportunity to leave behind a legacy of right living in the face of life’s challenges and disappointments. Leaving ethical capital is a way to leave a legacy amidst the dying process.	Written, orally, informally	Leaving ethical capital can promote dignity and diminish suffering near the end of life, especially for individuals with low SES who have a terminal illness. Can facilitate interactions with others, protect against social marginalization, and moderate survivors’ grief experiences.
Wynn & de Vries, 2005	Gerontology	Content analysis of 30 ethical wills from July 2005 from ethicalwill.com.	Ethical wills are non-legal written texts that give the author opportunity to express a legacy of values that includes how to work through life challenges, spiritual beliefs, and hope to family, friends, and community.	Written, letter format (66%)	NA
Ziff, 2016	Psychology	Describes a therapist’s experiences of conducting group work with older adults who are primarily retired and living independently. One group was: Ethical Wills--Why or How to Create One Yourself, which developed out of interest from another support group.	A moral, non-legal document also called legacy letter or legacy document including traditions and habits, and moral or spiritual values, regrets or forgiveness, behaviors and choices for future generations, which can be created at any time often around a life event or transition. More than life story; it includes the values that underlie the tales.	Written (e.g., letter, prose, poetry, unlimited length), audio, video, graphic art (e.g., photographs, films, paintings, or documentaries)	Can help provide the writer perspective on their life.

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; six percent (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 a) values, beliefs, and principles and b) 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 non-legal nature of ethical wills, and 37% (n=19) referenced bequeathing intangible or non-material information rather than possessions.

Figure 2.

Categories of Terms Used to Describe Ethical Will Content

Note. 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 other (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 other (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, 2003; Kaslow & Benjamin, 2015; Martin, 2015; Pagano, 2006; Tugend, 2020; Williams et al., 2010; Ziff, 2016). 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 (Alexander, 2006; Gustke, 2014; Kahn, 2001; Vizzard, 2012). 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 (Federer, 2013; Lynch, 2008; Vizzard, 2012).

While writing an ethical will is a powerful exercise, it is not recommended or beneficial for everyone. One article (Kaslow & Benjamin, 2015) 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 & Benjamin (2015) also stated 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, 1999).

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 non-legal 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 (Alexander, 2006; Baines, 2003; Cohen-Mansfield et al., 2009; Gaudiani, 2007; Kaslow & Benjamin, 2015; Shultz, 2006). 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 (Maxfield et al., 2014; McAdams & de St Aubin, 1992). It has been identified among older adults as a coping mechanism to address awareness of mortality and buffer existential anxiety (Maxfield et al., 2014). Further, 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 (Emanuel et al., 2007; Gawande, 2014; Kehl, 2006; Steinhauser et al., 2002; Steinhauser et al., 2000).

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, 1979; Newton & Jones, 2016). 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., 1997; Cohen-Mansfield et al., 2009; Gessert et al., 2004; Kaslow & Benjamin, 2015). 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, 2008; Martin, 2015).

The process of creating an ethical will is also beneficial to the writer (Cohen-Mansfield et al., 2009; Falkner, 2009; Gaudiani, 2007; Streit, 2012). 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 (Meuser et al., 2019; Thompson et al., 2009). 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, 2014, 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 (Alexander, 2006; Baines, 2003, 2004; Barnes et al., 1997; Cole & Kloberdanz, 2003; Falkner, 2009; Frank, 2003; Gessert et al., 2004; Grewe, 2017; Hicks, 2008; Martin, 2015; Shultz, 2006; Wheeler & Farnsworth, 2000; Williams et al., 2010). 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, 2016). 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, 2015).

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., 2005) 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., 2004; Stanton & Peyser, 2010). 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 (Hunter, 2007; Hunter & Rowles, 2005; Manoogian et al., 2007; Meuser et al., 2018; Morgan, 2003; Schultz-Krohn, 2002) or legacy interventions used for individual or group therapy that can be optionally shared with others (Allen et al., 2014; Barber, 2008; Franklin & Cheung, 2017; Ho et al., 2013; Robinson & Murphy-Nugen, 2018). 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, 2003).

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 & O’Malley, 2005). 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, 2003; Brown, 2007; Cohen-Mansfield et al., 2009). Martin (2015) recommends clinicians a) be educated on the value of leaving a legacy and the impact communicating it can have on patients and their families and b) 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., 2017; 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.