Abstract
Advance care planning (ACP) is a critical part of long-term health-care planning, as no one knows when the ability to make personal medical decisions may be impaired. Many assume ACP is only necessary for older adults or those with life-threatening health conditions; however, there are growing discussions about healthy, young adults also engaging in ACP, as they too suffer from unexpected medical events that limit their ability to make medical decisions. The current study examined the reactions of college students following the completion of their advance care plans and then sharing these plans with friends and family. The students reported that while completing their advance care plans created many emotions, they found the experience to be valuable and facilitated conversations with family and friends about end-of-life care that may not have occurred otherwise.
Introduction
Advance care planning (ACP) is a critical part of health care; however, engaging individuals in end-of-life (EOL) planning is difficult, as many contemplate death only when a life-threatening event or illness occurs or as one reaches older adulthood. ACP involves detailing EOL decisions and wishes to guide medical decision making in the event that a person is unable to participate in medical care due to a health crisis (Durbin, Fish, Bachman, & Smith, 2010; National Institute on Aging, 2013). Through ACP, individuals express their wishes to family members, friends, and health-care professionals, so in the event of a medical emergency, EOL wishes can hopefully be honored. In the United States, less than one third of adults have an ACP document (American Association of Retired Persons [AARP], 2008; Hickman, Hammes, Moss, & Tolle, 2005); however, about half of adults aged 60 years and older (AARP, 2008) and almost 90% of those in hospice have completed their advance directives (Jones, Moss, & Harris-Kojetin, 2011). As the National Institute on Aging and the Institute of Medicine emphasize, ACP is important regardless of age or health status in order to ensure a person’s EOL wishes are known, as most medical crisis cannot be avoided or planned.
In recent years, both the Centers for Disease Control and Prevention (CDC) and the National Institutes of Health have recognized the significant impact that the sudden death of a young adult has on families and society (National Institutes of Health, 2013). Today, unintended deaths, such as accidents and motor-vehicle crashes, are the number one cause of death for young adults (CDC, 2007). Despite this statistic, EOL planning is traditionally not perceived as necessary for young adults. Within the EOL literature, the importance of death education among college students has been readily documented (Sofka & Gilbert, 2012), including an emphasis on grief management, death-related services, and legal and ethical issues. However, this literature has not yet expanded to include the importance of ACP among college age students, even though ACP is readily discussed in most death education courses as other legal and ethical issues associated with EOL care are present. The purpose of this study is to explore the experience of ACP among college students in a death education course, with a specific focus on completing ACP documents, meeting with a certified EOL facilitator, and communicating EOL wishes with family members and friends. This will assist EOL practitioners and educators understand the importance of engaging young adults in conversations about ACP and articulating their EOL wishes.
Literature Review
Importance of Completing Advance Directive
Advance care planning is becoming seen as routine health care, as it assists everyone involved with the medical crisis and leads to greater service involvement (Durbin et al., 2010; Rutledge, Bookbinder, Donaldson, & Pravikoff, 2001). Individuals who engage in ACP are more likely to utilize other EOL services, such as hospice, than those who do not complete ACP documents. Similarly, the process of completing ACP has been identified as a strategy to facilitate better communication with medical providers and the larger health-care team, which ultimately leads to better care (Teno, Gruneir, Schwartz, Nanda, & Wetle, 2007). ACP can also assist families postdeath, specifically with grief reactions. Detering, Hancook, Reade, and Silvester (2010) identified that family members of older adults who received both EOL care and ACP facilitation demonstrated less stress, anxiety, and depression than those family members of individuals who just received basic EOL care. Detering et al. found a significant relationship between ACP and the likelihood that EOL wishes were known and honored by health-care professionals.
A challenge faced by many however is engaging family members and friends in discussions about EOL wishes. This has been identified as a major barrier in the completion rate of ACP documents (Detering et al., 2010; Ramsaroop, Reid, & Adelman, 2007). Planning for one’s own death can be overwhelming for the patient, those named as health-care agents, and other family members and friends involved in the process (McBride, 2013). Perceived emotions, such as anxiety and depression, can act as a barrier to even considering the completion of an ACP document. To help facilitate these conversations, programs such as Respecting Choices use trained facilitators to assist individuals in completing their ACP document. Evidence suggest that this facilitation enhances overall client satisfaction with the EOL planning process and increases the completion rate of ACP documents (Briggs, 2004; Hammes & Rooney, 1998; Romer & Hammes, 2004).
Advance Care Planning With Adolescents and Young Adults
Even though many younger individuals have not considered their own mortality, research has documented the willingness of adolescents and young adults to engage in EOL conversations (Hammes, Klevan, Kempf, & Williams, 2005; Hinds et al., 2005). In the past decade, there has been an emergence of literature discussing ACP with adolescents and young adults, specifically those with chronic diseases, including, but not limited to cancer and HIV. In fact, the American Academy of Pediatrics and the Institute of Medicine suggested that children, adolescents, and young adults with chronic, potentially life-threatening health conditions be included in EOL decision making. While these discussion need to be framed in age and developmentally appropriate manners, the child, adolescent, or young adult should be included in the process (American Academy of Pediatrics, 2000). Research has confirmed this recommendation identifying that young adults, particularly those with chronic health conditions, have the emotional maturity to make informed decisions regarding their EOL care (Ladd & Forman, 1995; Leikin, 1993). A few studies have explored the development of ACP tools for chronically ill adolescents to facilitate a better understanding of EOL care and the communication of their EOL wishes (Lyon, Garvie, Briggs, et al., 2009; Lyon, Garvie, McCarter, et al., 2009; Wiener et al., 2012). Consistently, this literature has emphasized that chronically ill young adults benefit from being involved in EOL treatment decisions, with this involvement enhancing trust in not only the medical process but also with the medical personnel and family members (Wiener et al., 2012).
Attention to ACP for young adults living with chronic disease has generated a larger discussion about the importance of ACP for healthy young adults as well. Kapp (2000) stated that young adults, particularly college students “ought also to be encouraged and assisted to plan ahead for terrible, but nonetheless conceivable, medical circumstances” (p. 44). Kapp continued stating that Part of the psychological devastation emanating from a medical tragedy can be mitigated when the student’s advance medical planning has specified prospectively his or her wishes regarding the identity of the surrogate decision maker and the values and goals that should guide the surrogates decision making process. (pp. 44–45)
In a challenge to this assumption, Lyon, McCabe, Patel, and D’Angelo (2004) examined the attitudes toward EOL planning among a group of chronically ill patients and a group of healthy patients. This research demonstrated that the majority of chronically ill and healthy young adults wanted to engage in EOL decision making, 96% and 88% respectively. This suggests that perhaps healthy, young individuals are more ready and willing than previously assumed to have conversations about their EOL wishes and engage in the ACP process. Even with the potential pushback about young, healthy adults engaging in ACP, Kapp (2000) provided three core arguments for the importance of ACP with this population. First, he emphasized that young adults, particularly college age individuals, are in fact adults. Thus, as adults, they have the right and should assume the responsibility to participate in their own medical decision making. Second, Kapp emphasized that while the hope is that no young adult will need ACP, should a traumatic medical event occur, it will assist in difficult decision making. Finally, Kapp indicated that by starting the process at a young age, individuals will hopefully develop a lifelong pattern of considering the medical needs of friends, families, and others should a crisis develop. Despite this call to action by Kapp over a decade ago, the literature on ACP among young adults is in its infancy stage. While national initiatives like Respecting Choices (2013) recommends ACP for all adults 18 and older, the research literature has yet to capture the process of ACP in younger individuals. This article will identify, from the lens of the young adult, the process of ACP.
Methods
Data Sources
Data for this study came from student reflection papers in an undergraduate death and dying class on reactions to completing ACP and sharing these plans with key family members and friends. The reflection paper was one of the core assignments for this course, which was taught by the principle investigator of this study. The reflection papers were blind graded by the primary instructor and the teaching assistant. The papers were maintained in an electronic course database until they were downloaded for analysis. For the purpose of the research, the papers were de-identified and did not contain grades or comments from the instructor or teaching assistant so that any bias during the analysis process could be minimized.
This assignment entailed four components. First, students received a 90-min lecture on the importance of ACP from the director of the county-wide ACP initiative. The county-wide program, Honoring Your Wishes, is part of the Respecting Choices Model developed by Gundersen Health System in La Crosse, Wisconsin (Respecting Choices, 2013). Like the national model, Honoring Your Wishes advocates that all adults 18 and older have advance care plans. The students engaged in the First Steps process, which is designed for healthy adults and encourages “individuals to learn more about the importance of ACP, select a healthcare decision maker, and complete a basic written advance directive” (www.gundersenhealth.org/respecting-choices/about-us/stages-of-planning). As part of the lecture, the students learned the basics of ACP, including the definitions of ACP, why ACP is important, and how decisions makers should be identified. The students were then provided with the ACP document for completion.
Second, as part of Honoring Your Wishes, facilitated discussions occurred between individuals completing their ACP and trained facilitators at two community-based locations. Prior to meeting with individuals, the facilitators participated in over 10 h of training on ACP and how to assist others in completing their ACP documents. Students met with a trained facilitator at least once to complete their advance directives. If desired, students could meet with the facilitator a second time to gain additional support and clarification about their ACP and to have them notarized. The sessions with facilitators lasted between 30 and 90 min. During the facilitated session, the students were provided with one-on-one instruction and counseling on how to complete the ACP document, with each component of the document being discussed in detail. If the student was unsure of how to complete a section because of discomfort, lack of information, or simply because they had not decided a treatment decision, the facilitators provided the student with “food for thought” in case they chose to revisit the document later and complete the section. While the goal of the facilitated meetings was for individuals to leave with a notarized ACP, the students were not required to complete this final step as part of the class assignment. It was determined that meeting with a facilitator was sufficient given that the majority of the students had not considered many of the issues in the ACP document prior to taking this class. In addition, many students were simply not comfortable making their ACP legally binding at the particular time.
Third, students were asked to present their ACP to key family members and friends. Specifically, students were asked to notify the individual whom they had selected as their decision maker and discuss with this person their EOL plans. The discussions occurred in person and the student was required to present a copy of their ACP to each person they were meeting with to discuss the assignment. During this discussion, students were also asked to inquire about this person’s EOL wishes. These discussions lasted between 20 and 120 min.
Finally, students were asked to write a 5-page reflection paper on the experience of completing their advance directives. Specifically, they were asked to discuss emotional reactions to completing the document with the facilitator, presenting it to family members and friends, and learning about the wishes of this person. They were also asked to reflect on how they saw this experiencing changing their perspectives on EOL care.
Sample
The sample consisted of 80 student reflection papers that were submitted to a class website across two semesters (Fall 2012 and Spring 2013). The students were third- or fourth-year students at a large Midwestern university. The students majored in social work, nursing, therapeutic recreation, child life, psychology, accounting, business, biomedical engineering, and communication. For all students, this was their first class on death and dying; however, some had courses in gerontology or health-care-related topics as part of their major that discussed some elements of EOL care. The majority of the students were Caucasian (N = 74) and ranged in age from 20 to 23 years. Seventy-four students were women, and six were men.
Data analysis
Content analysis was used to analyze the data. This process is designed to abstract meaning units from sections of written text. The meaning units are then utilized to develop larger themes that highlight key findings from the study (Glaser & Strauss, 1967; Lincoln & Guba, 1985; Strauss & Corbin, 1998). The data were analyzed twice, with the first analysis resulting in the initial meaning units. The meaning units were grouped into three larger themes: (a) the process of choosing an agent, (b) emotional reactions, and (c) actual wishes. Data were then reanalyzed using these three themes by two researchers independently. A count of how many students reported each theme occurred in a spreadsheet which also included supporting quotes and examples. During this step of analysis, additional subthemes that emerged were identified. A count of these subthemes was also stored in a spreadsheet that listed supportive quotes and examples. The researchers met to discuss these subthemes and named them, as well as examined the congruence in supporting quotes and examples.
Two researchers independently engaged in the analysis process in order to reduce bias. One researcher was the primary instructor of the death and dying course, while the other researcher had not participated in any aspect of the course. Divergent opinions of themes and subthemes were discussed, as well as quotes and examples. Any differences that could not be resolved were removed from the results section. The themes and subthemes that emerged were presented to two teaching assistants who assisted in grading the reflection papers to determine if they agreed with the analysis. Additionally, five students who took the death and dying course over the past year were asked to review the final results as a form of member checking and they also were in agreement with the analysis process.
Results
For the purposes of this manuscript, two primary themes will be presented: (a) emotions associated with the completion the ACP process, and (b) the process of choosing a health-care agent. Each of these main themes has several subthemes that further delineate the experience for students as they engaged in ACP.
Emotional Reactions
Self-protective disengagement
Eleven students communicated a sense of self-protective disengagement during this process. In essence, they were external of the assignment. Instead of presenting a thoughtful analysis of their experience completing their advance directives and presenting them to their family and friends, they simply reported what they did, while trying to remain emotionally separated from the process. These students expressed a desire not only for the assignment to be finished but also for the class to end so they could obtain a “much needed break from discussing death.” Through their writing, these students expressed their need to emotionally disengage, as they simply were not ready engage in ACP. As stated by one student, “these are big issues for me to consider and I am not ready for that yet.” Another student stated, I have never thought of myself as a person in denial about death; I do not think I was or am. I am just looking forward to returning to a more even keel on how frequently I contemplate the details of my death. I feel as though I have, through school work, been forced to dwell constantly on death, and I am ready for this dwelling to end. For me the experience was one that I did, but didn’t really think about. I have always prided myself of not being afraid of death, and being proud of the fact that I lived in the moment. It wasn’t until I had to start to think about what I would want for myself if I was ever in a car accident that put me into a coma, did it hit me that I may actually be put into a situation where I couldn’t control what was going to happen to me. I filled out the form with my emotions off like I was filling out a job application. I attempted to put the assignment out of my head for a while and went back to my regular routine, but as the week arrived for me to go to my meeting at the senior center I knew that I didn’t have the choice of putting it off anymore. I had even thought about cancelling my meeting for a later date just so I wouldn’t have to think about it.; I couldn’t bring myself to feel anything. All those words and terms about end of life seemed like such a far away, unreachable topic that I did not need to think about for many years. I felt like I should have been making this planning meeting for my parents rather than myself as I walked in.
Worry and fear of mortality
Twenty-six students indicated that they experienced an increase in fear of death and worry about their own mortality as a result of ACP. A female student stated, “I fear if I put it on paper, it will actually happen.” This sentiment was echoed by another student who stated, As strange as it sounds, I almost felt like by attending this meeting I was giving the okay for me to die. I saw it as some type of superstitious sign that I was going to die soon because I was making my end of life plans and after death arrangements … I have always thought if I do not talk about death then it is less likely to happen. As an individual prone to anxiety, this conversation conjured up a great amount of stress. I expressed my uneasiness and could feel tears swell up in my eyes. This experience was eye opening. Visualizing myself in a hospital bed surrounded by my family without being able to communicate left me feeling scared and distressed. Advance care planning is emotional and pinpoints the reality of death. Being in your early twenties normally doesn’t entail in-depth conversations about your end-of-life wishes … I sometimes go through the thought process of, “Well, that’s never going to happen to me anyway,” when in reality, it could happen tomorrow.
Positive growth
The majority of students, 76, expressed feelings of positive growth through this assignment. In fact, 57% (n = 43) exclusively reported positive growth experiences stemming from this assignment. While some of these students still expressed fear and worry or even disengagement, they also reported growing in some way as a result of the ACP process. Statements such as, “The truth is that death can come at any time, and I would rather be prepared than be afraid” and “Filling out this health care directive was actually very comforting and helped me” were readily expressed by students about the process of completing their advance directives. Another student stated, “Now that I have gone through my advanced directives and had the much-needed conversations with my health care agents, I feel that I have a better acceptance of my mortality.”
Students characterized the process of completing their advance directives as empowering. Students stated, “Creating this document was empowering for me” and Overall, I felt so empowered by going through this process, and it was something I would have never known about if it were not for this class. It also encouraged me to talk to some of the people who matter most to me about what they want as well. It pushed me out of my comfort zone and into a place where I needed to think about life-prolonging measures, my end-of-life wishes, pain control, CPR, etc. To think of all of those possibilities really opened my eyes and made me realize that this wasn’t so much about me, it was about my family as well … that if they were ever put in that predicament, maybe this document would make it somewhat easier. I cannot say this has been the most enjoyable experience, but I have learned a lot about myself through this process and my ability to make tough health care decisions despite the fact that I am in denial and fearful of my own mortality. A lot of good has come from this assignment because it has given me the opportunity to vocalize my fears and confront them to an extent. It has started a dialogue between my parents and I about death and dying …. My mom and dad have always told me the way life was going to be; however, through this legal document, I have the ability to, for the first time, articulate the way I want my life to be and how I want to die. Overall this process has helped me think more seriously about my wishes for my life as well as for the end of my life. Talking about death has always made me uncomfortable but I think it is incredibly important to have plans in place in the event of an accident so that your wishes can be made known, and it will help ease the stress for my family members regarding decision making. I also think it is very important to have these conversations with your family so that everyone can be on the same page, and can understand and respect the other’s wishes and values.
Process of Choosing an Agent
Not wanting to offend
Thirteen students indicated that there were concerned about offending a family member or friend by not choosing them to be their decision maker. While this represents only 16% of the total sample, it demonstrates the burden of choosing an agent for individuals. These students expressed that they had “close” relationships with both parents, all siblings, or all relatives and feared that if they did not choose one person, the other member(s) of their family would be angry and hurt by their decision. These students made comments such as “My mom and I have always been close and she will be so hurt if not asked” or My sister has asked me to be her decision maker, but I am not sure I can trust her to be there at a moment’s notice. I feel like I should ask her so she is not angry at me since I am her decision maker.
The actual selection
The majority of students (n = 74) discussed how they reached a decision for who would be their decision maker. All of the students (100%) who were concerned about offending people through their choice of decision making discussed the actual selection process. The majority of students chose a parent or a sibling to be their decision maker; however, because of strained relationships within the family, other students selected a friend or a significant other. Overwhelmingly, the students indicated that they selected their decision maker because this individual was “calm in crisis,” “would honor my wishes,” “has healthcare experience,” “would not get too emotional,” and “has had to do it for someone else.” The students recognized that this decision maker would need to be able to separate emotions from their job as indicated by many students. A female student stated, I wrote down the pros and cons of using each of my parents and decided that my dad was the best person as he could do the job of making difficult decision whereas my mom would let emotions drive her.
Reactions of the chosen agent
Seventy-nine students shared the reactions of the chosen agent when informed that they were named on the advance directives. The one student who did not share this described the selection process and the concerns about offending other potential decision makers but did not elaborate on how the specific chosen agent responded. The reactions of the decisions makers ranged from “relief” and “thankfulness” to “sadness” and “being overwhelmed at the thought of making decisions.” The majority of the students indicated that the person they selected was “very honored,” “humbled,” and “recognized the importance of what was being asked” of them. Interestingly, many of the decisions makers cried when the students shared with them that they had been selected. The students summarized this as “the significance of what was being asked of him was very apparent.” For the students, the reactions of the decision maker was “validating,” as it demonstrated to the students that they had made the right decision. As stated by one student, My mom looked at me and stated she never wants to have to make this decision but then stated that she saw it as her final gift to me … to make sure my wishes were honored. My mom went on to discuss that she would protect me when I was healthy or sick. I know my mom is a nurse and sees this as her job but it made me feel better knowing that she was willing to take this so seriously.
Discussion
Greater attention is needed on the impact of advance care planning on young adults. This study sheds some light into the process of completing ones care plans and discussing them with family and friends among young adults. The students who chose to enroll in this course may have a greater acceptance and openness to death than students who chose to not enroll, which may have impacted their reactions to this assignment. Additionally, because the reflections papers were graded, the amount of detail and personal examination may have been deeper and better expressed than what young adults who were not under the same circumstances may have experienced. Due to these two issues, future research should consider examining ACP among young adults who may not already have an interest in the topic of death and EOL care in general.
Advance care planning in young adults is slowly emerging. Young adults have higher rates of sudden and unexpected death due to fatal motor vehicle accidents than any other age group (CDC, 2007), which increases the need for ACP among this population to occur. Educators have a valuable role to play in starting the discussion with young healthy adults about ACP. Levi et al. (2013) highlighted the value of ACP experiences for medical students indicating that experiential learning provided them with greater insight into the emotions that come with ACP discussions. They saw this as a critical component for preparing them for future practice.
The results of this study demonstrated that for young adults ACP was positive not only for themselves but also for the person identified as the decision maker. As seen in the work of Levi et al. (2013), it is normal for young adults to have mixed emotions regarding ACP, but in the end, the experience is seen as valuable and important. They found that medical students who assisted in discussing ACP experienced many of the emotions that the students in the current study experienced including enhanced sense of responsibility, range of emotions from fear to greater contemplation about death and past deaths, and relief at the openness of individuals about the larger ACP discussion.
The present study showed the importance of ACP not only for young adults but the entire family system. Wiener et al. (2008) noted that ACP “could foster discussion with family and friends, and could facilitate communication between the primary health care provider and the adolescent or young adult regarding their personal goals, values or beliefs” (p. 1312). The present study demonstrated this as well, specifically that students were able to express their own voices about their desires for care. This showed a sense of maturity among the young adults that they were able to determine and express their own values and beliefs about EOL care decisions.
The sample in the current study was largely women, which is consistent with course enrollment within social work and other human service departments. Research has identified that there are gender differences in advance care planning that impacts the process (Perkins, Cortez, & Hazuda, 2004). For instance, women have more confidence in the health-care system and feel that clarifying and elaborating upon one’s wishes is important. Perkins et al. also identified that women find value in discussing ACP with friends and family members. The present study found that the students, primarily women, positively experienced this process even when though they may have struggled with the feelings that considering one’s own death produced. Death and dying, gerontology, or health-care courses are a natural location for engaging students in the completion of ACP. With the growth of the Respecting Choices initiative, many communities have a facilitators assisting in community wide ACP programs. This individual, if present, or even nurses or social workers from local hospitals can be an excellent resource for educating students about the need for ACP and then assisting in the ACP discussion. As seen by Levi et al. (2013), a systematic assignment to assist young adults in processing their experience with ACP is critical as such an intimate discussion about EOL wishes and care can raise many emotions that may need to be processed in a more systematic way.
The students we train today are the professionals of tomorrow, responding to EOL situations in health-care settings. Without learning about ACP and its importance, these future professionals may struggle in recognizing the magnitude of the decisions they are asking of patients and families, often in states of crisis. As seen in this study, young adults experience many emotions and reactions to completing ACP and sharing their wishes with others. Understanding one’s personal reactions to ACP is critical prior to entering the field and assisting others complete their own EOL wishes. Death educators have a responsibility to continue to challenge students to consider real-life situations and through experiential learning strategies process their own reactions so that these professionals are best prepared to serve the patients and families they will meet in the future.
Footnotes
Declaration of Conflicting Interests
The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
Funding
The author(s) received no financial support for the research, authorship, and/or publication of this article.