Abstract
Purpose: This is a pilot study that provides a description of the values older persons report in ethical wills and their reasoning for the values they chose, and compares the values in ethical wills of seniors and students. Nursing home residents rarely get the opportunity or venue to discuss these topics and the ethical will enables them to have conversations about issues they feel are important. Design and Methods: The 22 Questions for Ethical Wills© assessment was administered to 15 residents of a large nursing home in suburban Maryland and to 11 student volunteers. Raters identified recurring themes and independently analyzed the text from the ethical wills based on the themes. Questions that prompted similar responses were combined in the analyses. Results: The most prevalent theme among both nursing home residents and students was “interpersonal relations.” Differences between groups of respondents were especially evident for the theme of “education,” which was given by over a half of the older persons and none of the students. Greater variability was found in the responses of the older participants, as was a greater likelihood of providing detailed explanations for their relayed values. Implications: The 22 Questions for Ethical Wills© is a useful methodology to elicit meaningful discussions of values and life lessons in persons both young and old. This process offers an intriguing comparison between the similarities and differences of life views of persons at opposite ends of the age spectrum.
Keywords: Ethical will, Nursing home residents, Values, Advice, Life lesson
Ethical wills are documents in which people describe their values, advice, and life lessons for the benefit of others. These documents are meant to provide an enduring link between loved ones and a legacy that transcends the lives of the writers, and can enable the author to give guidance or comfort to the loved ones and friends whom he or she has left behind. There is no specific way to compose ethical wills because the custom of making one is quite ancient (exemplified in the Bible) and has over time been adapted into many different formats. For example, in Genesis 49, Jacob presents his 12 sons with a spoken version of an ethical will before his death, in which he provides his ethical judgment on their deeds (Genesis 49:28, New International Version). Another example is in King David's last words to Solomon: “I go the way of all the earth: be thou strong therefore, and shew thyself a man; And keep the charge of the Lord thy God, and walk in his ways . . .” (Kings 1, 2:2–3).
There are several theories that support the utilization of ethical wills. Erikson's (1963) generativity theory purports that individuals are primarily concerned with establishing and guiding the next generation—a concern that increases with age. Erikson believed that adults express generativity through nurturing, teaching, leading, and promoting the upcoming generation while generating outcomes aiming to benefit society and promote its continuity. Similarly, the ethical will enables participants to pass on lessons to teach and benefit their loved ones. Butler conceptualized life review as “a naturally occurring, universal mental process characterized by the progressive return to consciousness of past experience, and particularly, the resurgence of unresolved conflicts; simultaneously, and normally, these revived experiences and conflicts can be surveyed and reintegrated . . . prompted by the realization of approaching dissolution and death, and the inability to maintain one's sense of personal invulnerability” (Butler, 1963). In the same vein, the ethical will allows persons to look back and reminisce on past experiences.
The ethical will process provides a different experience and is done with a different goal in mind than values histories, medical directives, and living wills, with which people are typically more familiar. Although there have been several values history forms created, including the Pearlman's values history form and the Doukas and McCullough (1991) form, the core of these variations remains the same: They are all assessments of patient values with regard to end-of-life care that acknowledge the fact that medical decisions we make are largely guided by our values, beliefs, and personal preferences. For example, the Pearlman's values history form asks questions such as, “I believe it is acceptable to consider the financial burden of treatment on my loved ones when making health care decisions on my behalf (yes, not sure, no)” (Pearlman, Starks, Cain, Rosengren, & Patrick, 1998). Neither the ethical will nor the values history form are legal documents but can be used to supplement legal documents such as a living will. Although values histories are values-based directives, there are also treatment-based advance directive forms such as Emanuel's Medical Directive. This form details six specific clinical scenarios (e.g., coma, dementia, and terminal illness) and asks the respondent to choose from a list of possible treatments (e.g., mechanical ventilation, cardiopulmonary resuscitation, and dialysis) that they would or would not like to use as a treatment plan for a given condition (Emanuel & Emanuel, 1989). Living wills are legally binding and completed in the hopes of effectively communicating end-of-life treatment preferences to physicians or relatives who may need to make medical decisions on behalf of a loved one if he or she becomes incapacitated (Doukas & Reichel, 2007; Kressel & Chapman, 2007). The common thread linking values histories, medical directives, and living wills is that all are intended to advise surrogate decision makers as well as reduce the emotional stress and burden they will likely feel making end-of-life decisions for their loved ones.
Unlike these advance directive forms, the purpose of the ethical will is not to dictate end-of-life instructions and look forward but rather to communicate life lessons and look backward through one's life. The tone of the ethical will is not anticipatory of decisions for oneself but nostalgic and focused on imparting wisdom for the future of others, and could serve as a positive upbeat companion to the heavy content of advance directives.
Although there have been few methodological studies of ethical wills and the process of writing one, existing research has started to identify benefits to both writer and recipient. According to the results of a pilot study by Gessert, Baines, Kuross, Clark, and Haller (2004) in which cancer patients composed ethical wills, fewer participants reported pain and overall suffering after writing the wills. Loss of enjoyment of life also decreased, as did spiritual distress, concern for loved ones, feelings of having unfinished business, and fear of the future. The importance of writing down one's innermost concerns is demonstrated in a study by Pennebaker (1997), in which people who had experienced significant trauma (e.g., death of a loved one, abuse, severe illnesses) were assigned to either write in-depth accounts of their experience or write about trivial subject matter. Those who wrote about their traumatic experience showed positive effects on blood markers of immune functions (e.g., helper T-cell growth) based on blood tests, whereas participants who focused on trivialities failed to obtain a boost in immune function. Six weeks after the participants stopped writing, the findings still held—and those who expressed themselves in depth had made fewer doctor visits. Pennebaker repeated the same experiment or variations on the experiment multiple times over a period of 10 years, and the results were always consistent with the original: writing about upsetting experiences generated higher positive expectancies and a reduction in the emotional impact of the upsetting event as well as a reduction in physical symptoms (Pennebaker & Seagal, 1999). Other studies have also replicated the results of Pennebaker and corroborated that immune functioning does indeed receive a boost from writing about emotional experiences including improved function on helper T-cell growth, antibody response to the Epstein–Barr virus, and antibody response to hepatitis B vaccinations (Esterling, Antoni, Fletcher, Margulies, & Schneiderman, 1994; Langens & Schuler, 2007; Pennebaker, Kiecolt-Glaser, & Glaser, 1988; Petrie, Booth, Pennebaker, Davison, & Thomas, 1995).
The introspection needed to write an ethical will may be equally beneficial, as summarized by Rabbi Riemer and Stampfer (1983): “An ethical will is not an easy thing to write. In doing so, one confronts oneself. One must look inward to see what are the essential truths one has learned in a lifetime, face up to one's failures, and consider what are the things that really count. Thus an individual learns a great deal about himself or herself when writing an ethical will.” This level of self-awareness and acknowledgment of the meaningfulness of one's life can be beneficial, particularly toward the end of life. Similarly, Dr. Barry Baines, a family practice physician and leading proponent of ethical wills, reported that writing ethical wills can help individuals confront and take control of difficult life situations in a positive manner (Baines, 1998, 2003).
Yet another positive aspect of the ethical will process, and one that is addressed by the present study, is the potential for extensive intergenerational interaction. If, as in our study, younger persons transcribe the ethical will responses on behalf of the older participants, an interaction occurs that can be mutually beneficial to both generations. Several studies have found that the attitudes of children toward the older population were significantly more positive following participation in intergenerational programs and activities (Bales, Eklund, & Siffin, 2000; Cummings, Williams, & Ellis, 2003; Seefeldt, 1987). These programs can also successfully reduce children's misconceptions about aging (Aday, Rice, & Evans, 1991).
The present study is one of the first to describe the responses of both older persons and young adults (in this case, nursing home residents and student volunteers) to a project that elicited their ethical wills. This involved capturing their responses to a set of questions about their values and guidelines for life. The specific goals of the study were (a) to provide an initial description of the themes in older persons’ responses to the topics addressed in ethical wills and their reasoning for the values they chose and (b) to compare the values expressed in ethical wills of seniors and students. This article summarizes a pilot study, as the authors are making the ethical will procedure available to a larger population. The results of this pilot study are intended to provide an opening conversation about the values transmitted in ethical wills as well as the intergenerational methods used.
Methods
Participants
This is a pilot study made in conjunction with Lessons of a Lifetime™: the ethical will project, which was founded and codirected by two of the authors (Hedy Peyser and Joshua Stanton) to study and enhance intergenerational relations with ethical wills (Peyser & Stanton, 2007; Stanton & Peyser, 2007). Participants were 15 residents of a large Jewish nursing home in suburban Maryland (M age = 86 years, range = 74–99 years) and 11 student volunteers ranging in age from 16 to 22 years (M age = 19 years). The sample size was determined by those able and willing to participate in the pilot at that time. Details of student volunteer and resident demographics are presented in Table 1. Social workers as well as administrators from the Volunteer Department and Recreation Department determined the seniors best suited for the project. Nursing home residents who had the capacity to recount events from their lives as well as the social skills to work well with volunteers were invited to participate. Eligibility for the study was determined by staff members, who were able to evaluate the mental functioning of the residents by conversing with them and viewing their performance of daily activities. Social skills were easily gauged as well. For example, if the resident was capable of sustaining a conversation for a long period of time or maintained friendships within the nursing home, they were also deemed eligible for participation in the ethical will project. Potential participants were thus preselected by the staff members and were approached by a staff member, an experienced adult volunteer, or one of the student volunteers participating in Lessons of a Lifetime, who thoroughly explained the concept of the project. One of the investigators obtained informed consent from all residents to use their ethical wills as part of this study.
Table 1.
Participant Demographics
| Nursing home residents (n = 15) | Student volunteers (n = 11) | |
| Gender (female), % | 53.3 | 63.6 |
| Age in years, M (SD; range) | 86.23 (9.06; 74–99) | 18.6 (2.20; 16–22) |
| Level of education, % | ||
| Some high school | 21.4 | 45.5 |
| Some college | 21.4 | 45.5 |
| College graduate | 21.4 | 9.1 |
| Graduate degree | 35.7 | 0 |
| Type of school, % | ||
| Public | 80 | 54.5 |
| Private | 6.7 | 36.4 |
| Both | 13.3 | 9.1 |
| Birthplace, % | ||
| United States | 73.3 | 100 |
| Other: Austria, Czechoslovakia, Lithuania, Argentina | 26.6 | 0 |
| Father's birthplace, % | ||
| Europe | 80 | 9.1 |
| United States | 13.3 | 90.9 |
| Palestine | 6.7 | 0 |
| Mother's birthplace, % | ||
| Europe | 86.7 | 0 |
| United States | 6.7 | 90.9 |
| Palestine | 6.7 | 0 |
| Argentina | 0 | 9.1 |
| Occupational experience, % | ||
| Teacher | 20 | 0 |
| Secretary | 13.3 | 0 |
| Military job | 13.3 | 0 |
| Accountant | 13.3 | 0 |
| Other: lawyer, social worker, carpenter, seamstress, government job, % | 40 | 18.2 |
| None | 0 | 27.3 |
| Intern | 0 | 18.2 |
| Counselor | 0 | 36.4 |
| First language, % | ||
| English | 33.3 | 81.8 |
| Yiddish | 20 | 0 |
| English and Yiddish | 20 | 9.1 |
| English and other languages | 13.3 | 9.1 |
| German | 6.7 | 0 |
| Spanish and Yiddish | 6.7 | 0 |
Note: All participants were Caucasian and Jewish.
Student volunteers who participated in the study were preexisting volunteers at the nursing home whose duties included visiting residents, escorting residents to therapy, performing clerical tasks, bringing residents to and from activities, or running activities. They were interviewed by the director of the Volunteer Department at the nursing home and were selected on the basis of a one-on-one interview as well as their leadership experience, sociability, and writing abilities. Selection criteria included students’ (a) maturity; (b) interpersonal skills, as judged by their interactions with Volunteer Department staff and fellow volunteers; (c) assessment of their writing skills; and (d) reliability/availability. Students did not apply for this task but were selected by staff members through a formal selection process from a very large (more than 100 students) pool of summer volunteers. Informed consent was obtained for all volunteers participating in this project or from their parents in the cases of those younger than 18 years of age. Volunteers were trained to distinguish between oral histories and ethical wills, and learned goals and techniques for interviewing, and tips for note taking and transcription. They were also given guidelines for follow-up probes and taught how to ask follow-up questions based on the response of a senior. For example, they were taught to “connect the dots” and assume that what a person was saying often relates to other parts of the ethical will but that the connection had to be stated explicitly by the interviewee. Even more frequently, the probing questions were modeled to get specific details out of broader statements. Each volunteer was first asked to record the ethical will of a fellow student, both as a training exercise and to obtain a comparison pool of ethical wills. Only three volunteers were familiar with their resident interviewee prior to the study.
Measures
The 22 Questions for Ethical Wills© was devised by the codirectors of Lessons of a Lifetime™ and includes questions (see Table 2) in the following categories: values and advice, life review, and life appraisal. In this article, we focus on the questions related to values and advice. The volunteers were asked to follow-up on the questions to elicit as many details as possible from the respondent.
Table 2.
22 Questions for Ethical Wills
| Values and education |
| 1. What values and beliefs are important to you and which would you like to pass on to others? (Offer example of a value ——— education) |
| 2. What are your spiritual beliefs? |
| Thoughts |
| 3. Do you have children? What thoughts would you like to pass down to your children and/or grandchildren? If no children, what thoughts would you like to pass down to others? |
| 4. What books or films were most influential to you? What did they teach you? |
| Words of wisdom |
| 5. What advice would you offer other people about how they should live their lives? Or What words of wisdom do you wish to impart to the next generation? |
| 6. Is there anything in your life that you want others to know about? This is a gift to your family. |
| Life experiences |
| 7. What have you learned from your life experiences that you can share with us? Are there any particular experiences that you wish to share with your family or friends? Why did you choose these ones, out of your many memories? What have those experiences taught you? |
| 8. Have you ever had a life altering experience or an event that changed your life that you can share with us? How did this event affect you? Was this the most significant moment of your life? |
| 9. What was the most meaningful event in your life? Was it the result of a great deal of work? Did it change the way you view the world? |
| 10. What makes your life worth living? Was it a particular relationship, your work, a group you were a part of? |
| Life's lessons |
| 11. Did you have dreams when you were young that you fulfilled? Didn't fulfill? |
| 12. Have you learned something from your parents or grandparents that you wish to share with your children or others? |
| 13. Who is or was the most important person in your life and what did you learn from that person? |
| 14. Were there any others who greatly impacted your life? What did they do or say? |
| Regrets and gratitude |
| 15. Is there something that you are grateful for? |
| 16. Do you have regrets of something you did not do? Or something you did? |
| 17. What were the things in your life that you are most proud of? |
| Decisions |
| 18. What was the hardest decision you ever made? |
| 19. What hopes and/or dreams do you have for your loved ones? |
| 20. Is there anything in your life that you should have done differently? |
| Change and the future |
| 21. If you could change one thing in the world, what would it be? How would you change it? |
| 22. If you only had one year left to live, what would you do? |
Note: 22 Questions for Ethical Wills© is copyrighted by the Hebrew Home of Greater Washington.
Procedure
The study was approved by the Institutional Review Board of the Research Institute on Aging of the Charles E. Smith Life Communities, Rockville, Maryland. Each volunteer was randomly paired with a nursing home resident and encouraged to visit the resident prior to the first interview so that both parties could get to know one another. The volunteer eventually turned the conversation toward ethical wills, describing the activity as a “love letter to one's family” and “a record of the significant moments in a person's life, and a compilation of insights that this person has derived from these experiences.” The volunteers followed the questions outlined in Table 2. Residents dictated their responses to the student volunteers who recorded the responses by hand, reviewing their notes with the resident after each interview session. The volunteers transcribed their notes onto a computer the same day as the interview.
Throughout the interview process, the program directors maintained contact with each resident–volunteer dyad to ensure that both partners felt at ease and were having a positive experience, in the sense that there was (a) mutual respect between student and senior, (b) open and forthright interviews, and (c) comfort on the part of both participants. Relaxation, mutual respect, and openness are likely to enable a senior to speak about experiences that he or she might otherwise hide and thus reduce any bias in the answers.
If there were questions that residents did not feel comfortable answering, they could opt to skip these questions. Additionally, after interview, if there was information that residents wanted to remove from their responses, these requests were honored.
The volunteers submitted the transcribed interviews and demographic questionnaires to the program directors for minor editing (e.g., grammatical and cosmetic changes), during which the content of the original transcribed ethical wills themselves was not altered. Another version of more heavily edited wills were printed, set with an attractive binding, and given to the residents to present to their family and friends at an “Ethical Will Soirée” designed to celebrate the accomplishments of students and seniors alike.
The analytic approach involved in-depth analysis using the following principles of grounded theory methodology (Strauss & Corbin, 1998): (a) The data were collected and analyzed without a preconceived framework in mind, and findings were viewed as ideas that will prove workable and helpful in making predictions and furthering understanding of the topic; (b) the researchers aimed to develop theories and ideas based on the data that were grounded in localized accounts and experiences; that is, the conclusions needed to be traceable to the data that gave rise to them. Conclusions developed were not rigid to accommodate any future contradictory data; (c) conclusions were developed first through broad concepts and then more specific categories to illuminate the data; (d) the researchers aimed to develop a general analytical framework with relevance extending beyond the research setting; and (e) the process of data analysis was kept as open and transparent as possible. Several of the authors and other research staff members, one with a doctoral degree and one with a bachelor's degree, analyzed each transcript individually. All research staff members read each transcript. A list of all emerging themes across all transcripts was compiled, and these were clustered into groups on the basis of similarity and overlap. The resulting groupings were then further refined during meetings of the research staff members in a process resulting in the identification of the main themes, with each main theme comprised of a number of subthemes. Themes and subthemes were labeled as much as possible using the participants’ own words, through selection of a representative quotation. All transcripts were then recoded according to this list of themes and subthemes, and all relevant extracts were listed under each thematic heading. Based on the reading of the responses and an initial analysis, it was determined that Questions 1, 3, 5, and 6 shared similar themes and were eliciting very similar responses centered on values and advice. As such, these responses were combined in the analyses, and this report summarizes those values. The research staff member reviewed their categories and agreed on the theme categories and then independently analyzed the text from the ethical wills based on the themes. After rating the ethical wills independently, they met and discussed discrepancies and revised the nomenclature to fit the results of the discussions. Several such iterations took place until an agreement was reached. Rigor and transferability of data interpretation were ensured by having several researchers develop the coding scheme and finalize it through multiple iterations and discussions. We then reanalyzed each response according to the coding theme, with another researcher reviewing the coding, and topics of disagreement reviewed until a mutual agreement was reached. Finally, many of the examples were used in the manuscript and those have again been reviewed by all the authors.
This study pertains specifically to the questions that elicited answers regarding values and advice, and therefore, the foci of this article are as follows: “What values and beliefs are important?”, “What thoughts would you like to pass down to your children and/or others?”, “What advice would you offer other people about how they should live their lives?”, and “Is there anything in your life that you want others to know about?”
Results
The prevalence of themes provided by the older adults and student volunteers for the aforementioned questions are presented in Table 3 and described in the following paragraphs. An “S” denotes responses given by students and an “R” indicates responses given by residents.
Table 3.
The Prevalence of Specific Subthemes, Organized by Prevalence Among Nursing Home Residents
| Nursing home residents (n = 15), % | Students (n = 11), % | |
| Relationship with others | ||
| Interpersonal | 67 | 91 |
| Family | 27 | 55 |
| Societal and world values | ||
| Societal values | 27 | 0 |
| Education | 53 | 0 |
| Environment related | 7 | 18 |
| Personal beliefs, choices, and life decisions | ||
| Personal attributes | 20 | 9 |
| Integrity | 20 | 36 |
| Find happiness | 47 | 36 |
| Religion | 20 | 18 |
| Stress/life management | 20 | 36 |
| Success | 7 | 18 |
| Moderation | 13 | 36 |
| Individualistic | 20 | 9 |
| Other | 13 | 18 |
Themes
Relationships With Others.—
Both age groups frequently mentioned advice and anecdotes regarding personal relationships. The most prevalent theme among both nursing home residents and students was that of “interpersonal relations.” This theme captured such answers as “honesty (S/R),” “acceptance (S/R),” “kindness (S/R),” “treat others how you want to be treated (S/R),” “respect others (S/R),” “don't discriminate (R),” “be thoughtful in your relationships with others (R),” and “do community service (S).” Approximately one quarter of the older persons and over half of the students endorsed the “family” theme. Within that theme, responses included “family is important (S/R),” “honor your parents (R),” “accept family differences (R),” and “life is a gift to your family (S).”
Society and World Values.—
Many respondents mentioned values that they believed should influence life decisions. More than one fourth of the older persons, but none of the students, discussed “societal values” (e.g., justice [R], freedom [R], democracy [R], euthanasia [R], world peace [R]). The theme of “education” was mentioned by more than half of the older persons but none of the students, and included statements such as “education is important (R)” and “I strongly believe in the value of study (R).” The “environment-related” themes (mentioned by two of the students and one of the residents) included the responses “save the environment (R),” “recycle (S),” and “respect the environment (S).”
Personal Beliefs, Choices, and Life Decisions.—
Numerous answers given by both age groups related to very specific personal values. “Personal attributes” were cited by one of the students and three of the residents (e.g., sense of humor [R], optimism [R], creativity [S]). Three of the nursing home residents and four of the students gave “integrity -related” answers (e.g., have integrity [S], finish what you start [S], be true to yourself [S], don't get caught up in material things [S], learn from your mistakes [R], be a good person [R]), and the theme of “finding happiness” was discussed by approximately half of the residents and one third of the students (e.g., enjoy life [R/S], find a reason for living [S], make the best of the hand you’re dealt [S], focus on the good in life rather than the bad [R], do something you enjoy regardless of the money you make [R], happiness is a destination—not a guarantee [R], appreciate what you have [S/R]). The theme of religion was invoked by answers such as “the Jewish religion is important (S/R),” “being religious is important (S),” “hold on to your beliefs (R),” “preserve religious traditions (R),” and “remember God is helping you (R).” Solutions to dealing with “stress/life management”(e.g., someone else's situation is always worse [S], don't stress over what you can't change [S], don't dwell on the past [S], don't worry about small things [S], apply the lessons of your past to the present [R], if you don't find a solution—wait [R]) were offered by four of the students and three of the residents. Methods of achieving “success” (e.g., always try to better yourself [S], drive to succeed [S], make a good first impression [R]) were offered by three of the students and one of the residents. Relating to personal behavior was the theme of “moderation” (mentioned by two of the residents and four of the students, e.g., take things slowly [S], don't get caught up in the grandiose [S], keep the big picture in sight [S], think things through/use common sense [S/R], don't get aggravated over minor things [R]). Finally, “individualistic” values (given by three of the residents and one of the students) were “follow your heart (R),” “everyone in life must find their own way (R),” “live life as you see fit (R),” and “you always have a choice (S).”
Answers that did not fall under one of the more specific themes were placed in the “other” category, and included “always carry money with you (S),” “close the borders (R),” and “don't wear black to my funeral (S).”
Range, Bases, and Explanations for Responses
There was a large variability in the type of responses among the older persons, and in several instances, participants opted not to respond. For example, one person did not want to provide any value in response to the first question, whereas others provided explanations and descriptions of themselves to better illustrate their values. Some participants felt that previous responses were applicable to more than one question and repeated their previous responses, others gave unrelated answers, and others provided very general advice (such as the resident whose message to his or her children was “Do as well as you have been doing or better!”, or another resident who advised “Be a good person and a good parent to everyone”).
The reference to the values themselves (from which the researchers garnered the aforementioned themes) was most often short and embedded in an explanation that provided context (see following) rather than content to the value. There were, however, times when residents elaborated on the meaning of the values, as seen in,
Don't take things too seriously; don't get aggravated for minor things; select issues to get upset about but make them rational to you. If you don't find a solution—wait, the solutions will come to you; you don't have to search for solutions all the time. And sometimes you have to wait a while before you find your way. Nothing is solved instantly.
Students were more likely than older persons to elaborate on the meaning of the value, as illustrated by the following students’ quotes:
I would like to pass on to others the virtues of honesty and acceptance. Though honesty might be difficult in the short term, it is the best policy for the long run. One should recognize that everyone has their own way, and always try to understand where others are coming from. Even if one doesn’t agree with another's actions or values, it is still important to respect each other.
A good person should try to empathize with others, because from empathy comes mercy and compassion . . . no one is exactly alike; people all over the world live in very different circumstances. . . . People must understand and accept that everyone is a complex, three-dimensional being. . . . There is right and wrong, good and bad—unfortunately, the world rarely splits into black and white. Subsequently a smart person evaluates the situation when making a decision. One should always seek to educate oneself. Only a fool blinds himself.
The values described by participants were often accompanied by justification for the personal importance of those values based on their life experiences. Those could be of several types:
Reasons detailing what life influence made the specific value important to them (e.g., “Be thoughtful in your relationships with others. My mother would help the neighbors when a relative died by buying black cloth for them to be dressed in and had to pay it off monthly because she really couldn’t afford it”; or, “I think education is really important, because in our family we had three school teachers . . .”): These life influences often reflect a resolution of an important life conflict. For instance, one resident said, “I believe in the importance of acceptance. Though my daughter married Jewish, my son and many of my grandchildren did not. They loved the Judaism they saw in the home, but they went their own way. I give credit to both families for being open minded to other religions. I never had any misgivings that it wasn’t right; both families integrated in a good way. It is important not to judge others and accept people for who they are. I learnt this from my children and grandchildren who showed me to care for people of other religions.”
Reasons or anecdotes illustrating the utility of the value (e.g., “I had two sisters, one who had her own business and one who was a private secretary, and their education helped them when they were in business”). Some participants simply illustrate the life story in relation to the value, such as: “I had a sister who wanted her son to be a professor, and he didn’t become a professor. And of course she was disappointed, but he became his own self. And that's what you have to do. You have to start living for . . . yourself.”
Stories of the evolution of the value, for example, “As a young person you aren’t aware of how much you need your sisters, brothers, and parents. You lose sight of how much they really mean to you.”
Stories of claims that they practiced the value. For example, one resident said, “I always tried to learn more,” supporting the value of education.
Another type of reasoning displayed by residents involved general utilitarian principles, for example, “Education is crucial to be able to mingle with people of your own intelligence or higher, and it will grant you many more choices in life.” Another resident said, “You have to have an education now to get a decent job or occupation.” The value of education was justified by one of the senior respondents who said, “Mind subsists on study,” meaning that study is necessary to have an active mind. Explaining democracy as a value led one of the residents to say, “It protects the rights of minorities, and needs and interests, despite lack of majority vote.”
Unlike the residents, the students most often did not provide reasoning, either historical or utilitarian, for their values (other than the value making one a good person). Some did refer to their parents as instilling a principle, for example, “Everyone will always experience tough times, but hold on and don't give up; there will be other days to start over. My father would quote Winston Churchill, who said, ‘Keep bugging on!’ One should keep going, even if it's not easy.” One student provided both a historical and utilitarian reasoning for his values: “The value of integrity is the one I would emphasize when talking to other people about the way they should live their lives. My parents, who are both prosecutors, have instilled this value in me,” and “One of the values my parents learned from their parents and have passed on to me, which I intend to pass on to any children I have in the future, is the value of community service.”
Most examples provided related to the family, and occasionally, some referred to a public figure, such as Winston Churchill in reference to democracy and Felix Adler (founder of Ethical Culture) in reference to love as a value. The students also sometimes mentioned other figures, for example, “Moshe was saying that when bad things happen one should always move forward and not dwell on the past” and “The rabbis say, ‘The work is not for you to finish, but neither are you to cease.’”
Several residents were wary of giving advice, and one described how as he has gotten older, he has become wiser (he hopes), more modest and more aware of his own limitations, and therefore more cautious when giving advice to other people. One resident said, “As you can see, the children today have minds of their own, so you can't tell them what to be interested in.” Similarly, one said, “I had a sister . . . and she had a son she wanted to [become] . . . a doctor. But he did not become a doctor, he became an actuary. He did not become what his mother would have liked him to be, and yet he was a very well known gentleman.”
There were a number of differences between the responses of the residents and the students. In addition to the differences in content described in Table 3, there was a difference in manner. Students were more likely to elaborate on the content rather than context of their advice, as the residents often did. The students were less likely to present conflict and, unlike the residents, did not reflect about the potential drawback of giving advice.
Discussion
The process of writing an ethical will can be a positive cathartic experience for persons as well as an opportunity for introspection (Baines, 2003; Flashman, Flashman, & Quick, 1998). The ethical will sets itself apart from values histories, medical directives, and living wills because it does not aim to prepare the author and reader for tragic or unfortunate events; rather, it enables both to reflect on happy and memorable ones and on transmitting lessons learned. It is therefore important to consider supplementing documents that pertain to advance directives with an ethical will, so as to add a more positive component to these end-of-life preparations. The 22 questions that comprise this ethical will project were chosen because of their potential for promoting a free discussion with older adults on their outlook on life, thus enabling participants to both “pass on” important values, beliefs, and life experiences to loved ones and serving a therapeutic purpose for participants themselves. Although this format worked for the Jewish elderly persons involved in this study, and although the questions were chosen so as to not be biased by a specific religious outlook or dogma, it is likely that to optimize the use of the ethical will with persons from other cultural backgrounds, the questions may be modified to refer to religious or cultural values.
Whereas existing research focuses on the ethical will experience within the older population, the present study engaged both older adults and student volunteers. As can be seen in Table 3, the 22 Questions for Ethical Wills© elicited thorough thoughtful responses from both age groups and revealed strikingly similar themes in some places and markedly different ones in others across groups.
Similar responses were seen in our finding that interpersonal values were those most often mentioned by both the older adults and the student volunteers. Several other themes, such as finding happiness and religion, were mentioned in both groups to a similar degree. Differences between groups of respondents were especially evident for the theme of “education”, which was given by 53% of the older persons and none of the students. This may be due to the fact that students took part in educational experiences for their whole lives and potentially took that course of action for granted, whereas the older generation had to toil to get their education. A similar mechanism may explain the difference in mentioning societal values. The older persons who had experienced, either firsthand or secondhand, regimes where democracy and freedom were not practiced mention it as a value to be noted by others, whereas the students grew up in a society where democracy was more readily taken for granted.
In terms of style of response, there were also differences between the generations. The residents usually gave short descriptions of the values but elaborated on the reasoning for the value based on their life experiences and development. In contrast, the students provided more abstract and lengthy explications of the values but, as a rule, did not provide life-based reasoning for the values. For example, one student remarked:
Find something to value—some reason in life. There is no over-arching Meaning of Life—we each define our own reasons for living. Be kind, be generous, be polite, and above all, think things through. There is always a choice in life. The only laws we have to obey are the laws of nature. In general, it's better to obey the law—in fact, I strongly believe in abiding by the law—but when push comes to shove, remember, there is a choice. You just have to be willing to accept the consequences of that choice.
These differences likely reflect the differences in wealth of life experiences but may also reflect developmental changes, such that in adolescence and young adulthood there is greater involvement in abstract ideas, which may decrease in old age. Older persons were chosen who did not show obvious cognitive decline; yet, their cognitive level was not evaluated, so that some more mild degree of cognitive decline may have also affected their level of abstract discourse.
Another generational difference was evident in the level of certitude regarding one’s advice and its potential value. Despite or perhaps because their wisdom was generated through lifetimes of experience, the older generation was more skeptical about the value of providing advice and guidance to others, whereas no ambivalence was displayed by the younger generation. It should be noted, however, that differences in responses between the older respondents and the students may to a degree be due to the methodological differences in the administration of the ethical will, in that the student respondents were being interviewed by their peers, whereas the older participants were interviewed by younger persons.
The present study has several strengths. First, we utilized nursing home residents as respondents, a segment of the population that is often passed over in preference for community-dwelling elderly persons. Although examining ethical wills in community-dwelling persons is equally important and should be studied, it is noteworthy that this tool can be used also with frail older persons such as nursing home residents (albeit not with all residents). Second, we incorporated an intergenerational comparison, thereby offering a new perspective on the emergent themes. And finally, ethical wills were analyzed in a qualitative research project, which has never been done before.
The main limitation of the study is that, as this was the first pilot study of the use of ethical wills in this manner, the sample size was small for both age groups. A larger sample size would likely have increased the variation in responses and divergence in important themes between groups. Similarly, a larger sample would have decreased the impact of cases of nonresponse that occurred when participants (most often the residents) opted not to answer a specific question. Frequently, there was no reason given for this choice, but it is plausible that, as posited by the theory of gerotranscendence (Tornstam, 1989), the transition to a more cosmic and transcendent point of view made some of the issues seem trivial.
Further limitations include the lack of diversity in participants (as they were recruited from a pool homogeneous in religion, race, etc.). A potential problem in terms of comparing the two populations is that younger and healthier older adults, rather than nursing home residents, might have yielded more comparable answers to the students. It is also feasible that a social desirability bias could be present during interviews. For example, student participants may put forth different responses to a student interviewer than they would to an older adult and vice versa. As such, it would be beneficial for future research to control for this social desirability bias as well as to ensure a comparable interview experience for both age groups by having older adults interview the younger participants or older adults interview other older adults. In the case of older adults interviewing younger participants, it may be wise to utilize students who have not worked with the ethical wills for these interviews to control for the fact that, in the present study, student volunteers were aware of the ethical will content prior to completing their own. This knowledge may have influenced the students’ responses as it allowed them time to think and mull over the questions, an opportunity the older respondents did not have.
Future research should expand the study of ethical wills, utilizing not only a larger sample of nursing home residents but also community-dwelling older persons. These larger samples will provide much more comprehensive data and allow for greater generalization of the results. Future research would also benefit from recruiting a larger sample size from more heterogeneous cultural and ethnic backgrounds, screening for more background variables (e.g., depression and cognitive functioning), and conducting a follow-up survey asking participants to rate their experience of developing a personal ethical will. Given the very large individual differences in abilities in late life (Snowdon, 2003), it is expected that the use of ethical wills may be appropriate for some older persons and not for others. Future research should examine the cognitive and motivational characteristics that make older persons good candidates for executing an ethical will. As one of the goals of the ethical will is to offer respondents an opportunity to gain a sense of peace through processing emotions and experiences, it behooves future studies on ethical wills to examine whether this truly is a positive experience for participants.
Nonetheless, this article demonstrates the viability of the ethical will as a methodology to elicit meaningful discussion of values and life lessons in cognitively intact nursing home residents. The ethical will can be used to promote in-depth intergenerational interaction and to capture the similarities and differences between the life views of the young and old members of society. This document can offer older persons on the cusp of facing end-of-life challenges the opportunity to engage in positive and altruistic reminiscences. Ethical wills can also help older persons meet the difficulties associated with aging with the opportunities to have their voices heard and to assume the valuable role of persons imparting wisdom and detailing experiences that may assist others.
References
- Aday RH, Rice C, Evans E. Intergenerational partners project: A model linking elementary students with senior center volunteers. The Gerontologist. 1991;31:263–266. doi: 10.1093/geront/31.2.263. [DOI] [PubMed] [Google Scholar]
- Baines BK. Ethical wills: Preserving your legacy of values. 1998. Retrieved March 12, 2008, from http://www.ethicalwill.com/index.html . [Google Scholar]
- Baines BK. Ethical wills: Creating meaning at the end of life. Home Health Care Management & Practice. 2003;15:140–146. [Google Scholar]
- Bales SS, Eklund SJ, Siffin CF. Children's perceptions of elders before and after a school-based intergenerational program. Educational Gerontology. 2000;26:677–689. [Google Scholar]
- Butler RN. The life review: An interpretation of reminiscence in the aged. Psychiatry. 1963;26:65–70. doi: 10.1080/00332747.1963.11023339. [DOI] [PubMed] [Google Scholar]
- Cummings SM, Williams MM, Ellis RA. Impact of an intergenerational program on 4th-graders' attitudes toward elders and school behaviors. Journal of Human Behavior in the Social Environment. 2003;6:91–107. [Google Scholar]
- Doukas DJ, McCullough LB. The values history: The evaluation of the patient's values and advance directives. Journal of Family Practice. 1991;32:145–153. [PubMed] [Google Scholar]
- Doukas DJ, Reichel W. Planning for uncertainty: Living wills and other advance directives for you and your family. 2nd ed. Baltimore, MD: Johns Hopkins University Press; 2007. [Google Scholar]
- Emanuel LL, Emanuel EJ. The medical directive: A new comprehensive advance care document. Journal of the American Medical Association. 1989;261:3288–3293. doi: 10.1001/jama.261.22.3288. [DOI] [PubMed] [Google Scholar]
- Erikson EH. Childhood and society. 2nd ed. New York: Norton; 1963. [Google Scholar]
- Esterling BA, Antoni MH, Fletcher MA, Margulies S, Schneiderman N. Emotional disclosure through writing or speaking modulates latent Epstein-Barr virus reactivation. Journal of Consulting and Clinical Psychology. 1994;62:130–140. doi: 10.1037//0022-006x.62.1.130. [DOI] [PubMed] [Google Scholar]
- Flashman M, Flashman R, Quick S. Ethical wills—Passing on values important to you. Lexington: University of Kentucky Cooperative Extension Service Press; 1998. [Google Scholar]
- Gessert CE, Baines BK, Kuross SA, Clark C, Haller IV. Ethical wills and suffering in patients with cancer: A pilot study. Journal of Palliative Medicine. 2004;7:517–526. doi: 10.1089/jpm.2004.7.517. [DOI] [PubMed] [Google Scholar]
- Kressel LM, Chapman GB. The default effect in end-of-life medical treatment preferences. Medical Decision Making. 2007;27:299–310. doi: 10.1177/0272989X07300608. [DOI] [PubMed] [Google Scholar]
- Langens TA, Schuler J. Effects of written emotional expression: The role of positive expectancies. Health Psychology. 2007;26:174–182. doi: 10.1037/0278-6133.26.2.174. [DOI] [PubMed] [Google Scholar]
- Pearlman R, Starks H, Cain K, Rosengren D, Patrick D. Your life, your choices—Planning for future medical decisions: How to prepare a personalized living will (National Technical Information Service PB#98159437) Springfield, VA: U.S. Department of Commerce; 1998. [Google Scholar]
- Pennebaker JW. Opening up: The healing power of expressing emotions. New York: Guilford Press; 1997. [Google Scholar]
- Pennebaker JW, Kiecolt-Glaser JK, Glaser R. Disclosure of traumas and immune function: Health implications for psychotherapy. Journal of Consulting and Clinical Psychology. 1988;56:239–245. doi: 10.1037//0022-006x.56.2.239. [DOI] [PubMed] [Google Scholar]
- Pennebaker JW, Seagal JD. Forming a story: The health benefits of narrative. Journal of Clinical Psychology. 1999;55:1243–1254. doi: 10.1002/(SICI)1097-4679(199910)55:10<1243::AID-JCLP6>3.0.CO;2-N. [DOI] [PubMed] [Google Scholar]
- Petrie KJ, Booth RJ, Pennebaker JW, Davison KP, Thomas M. Disclosure of trauma and immune response to Hepatitis B vaccination program. Journal of Consulting and Clinical Psychology. 1995;63:787–293. doi: 10.1037//0022-006x.63.5.787. [DOI] [PubMed] [Google Scholar]
- Peyser H, Stanton J. Ethical wills project shares wisdom and builds community. AAHSA FutureAge. 2007;6:45. [Google Scholar]
- Riemer J, Stampfer N. Ethical wills: A modern Jewish treasury. New York: Schocken Books; 1983. [Google Scholar]
- Seefeldt C. The effects of preschoolers' visits to a nursing home. The Gerontologist. 1987;27:228–232. doi: 10.1093/geront/27.2.228. [DOI] [PubMed] [Google Scholar]
- Snowdon D. Healthy aging and dementia: Findings from the Nun Study. Annals of Internal Medicine. 2003;139:450–454. doi: 10.7326/0003-4819-139-5_part_2-200309021-00014. [DOI] [PubMed] [Google Scholar]
- Stanton J, Peyser H. Sharing wisdom and building community: The ethical will project. Nursing Homes/Long Term Care Management. 2007 [Google Scholar]
- Strauss AL, Corbin J. Basics of qualitative research: Techniques and procedures for developing grounded theory. 2nd ed. Thousand Oaks, CA: Sage; 1998. [Google Scholar]
- Tornstam L. Gero-transcendence; a meta-theoretical reformulation of the disengagement theory. Aging: Clinical and Experimental Research. 1989;1:55–63. doi: 10.1007/BF03323876. [DOI] [PubMed] [Google Scholar]
