JOURNAL OF PALLIATIVE MEDICINE Volume 16, Number 12, 2013 ª Mary Ann Liebert, Inc. DOI: 10.1089/jpm.2013.0039

An Interactive Exercise in Advance Care Planning for Medical Students Benjamin H. Levi, MD, PhD,1 Michael Wilkes, MD,2,3 Claudia Der-Martirosian, PhD,3 Polly Latow, MS,4 Mark Robinson, MSW,4 and Michael J. Green, MD, MS1


Background: With the growing need to train medical professionals how to engage their patients in advance care planning, this study examines medical students’ experience using an interactive, online decision aid to help consenting adults complete an advance directive. Methods: Third-year medical students at the University of California, Davis (UC Davis) used an online, multimedia decision aid to help an adult discuss his or her wishes for medical treatment and create a formal advance directive for health care. Students then wrote essays about their experiences, and an iterative analysis was used for thematic categorization. Results: Four distinct thematic categories emerged from students’ essays: 1) students’ personal experiences with advance care planning; 2) participants’ experiences; 3) recommendations for practice regarding advance care planning; and 4) feedback about the online decision aid. Conclusions: An interactive, online decision aid can play a meaningful role in educating medical professionals about advance care planning.



hysicians and other health care providers are well aware that when life-or-death medical decisions must to be made, most patients (*75%) lack decision-making capacity.1 It is also widely recognized that advance care planning offers people the opportunity to not only reflect on and articulate their wishes for future medical treatment, but also to designate a proxy decision maker and communicate their values/wishes to loved ones and others.1 Doing so increases the likelihood that surrogate decision makers make treatment choices that are consistent with the person’s wishes,2–4 and, equally as important, helps prevent loved ones from being burdened with unintended financial stress, guilt, and confusion.5 In the United States, there is a general expectation that when a patient’s wishes regarding end-of-life care are unclear, life-sustaining medical treatment will be provided unless it has no chance of forestalling death. Although in many circumstances, such ‘‘erring on the side of life’’ is a reasonable default approach, it can also result in unwanted and burdensome treatment, which may be counter to patient wishes. Polls generally show that as many as three-quarters of adults

would not want life-sustaining medical treatment in all circumstances; and because fewer than 30% of adults spell out their wishes for end-of-life care,6,7 the majority of people are at risk for receiving medical interventions they would not actually want. Given the emphasis Western medicine places on patient autonomy, it would seem natural for doctors to routinely encourage patients to express their wishes before life-of-death circumstances arise. But typically they do not, whether due to other priorities or hesitation to address the topic.8–10 Rather, doctors often wait for patients to raise the subject, while the patients wait for some indication from the doctor that it’s time for a conversation.11 Contributing to this standoff is the fact that many doctors report feeling unprepared to conduct such a discussion, having had little preparation for advance care planning during their training.12,13 Additionally, cultural and legal norms, as well as insurance reimbursement and the ‘‘hidden curriculum’’ in medical training tend to discourage nonaggressive, non-cure oriented approaches to lifethreatening conditions, the result being that such discussions are often avoided.14,15 Most initiatives for addressing this situation are aimed at patients.16 We ourselves (BHL and MJG) have created such an


Departments of Humanities and Pediatrics, Penn State College of Medicine, Hershey, Pennsylvania. Office of the Dean, 3School of Medicine, 4Department of Internal Medicine, University of California, Davis, California. Accepted July 19, 2013. 2


1524 initiative: an interactive, computer-based tool that we developed to help patients with advance care planning: Making Your Wishes Known: Planning Your Medical Future (MYWK).17 In a prior study, we demonstrated that MYWK outperforms standard advance care planning tools for improving medical students’ knowledge about advance care planning.18 To better understand the value of using MYWK as part of doctors’ training, the present study qualitatively examines the experience of third-year medical students who used this computerbased decision aid to help another person complete an advance directive. By way of overview, MYWK guides users through the process of advance care planning, providing tailored education, values clarification exercises, and a decision-making algorithm that generates a personalized advance directive intended to document an individual’s values/goals/preferences and to help others make treatment decisions in the event that the person cannot speak for him- or herself. 17 (The program can be found at Methods During October 2010, third-year medical students enrolled in the required ‘‘Doctoring’’ curriculum at the University of California, Davis (UC Davis) completed an interactive educational module on the end of life that involved structured interactions with standardized patients as well as preparatory readings. Each student was also required to help a consenting adult (patient, acquaintance, or relative) engage in advance care planning using the online tool, MYWK, and then write an essay about the experience. For the essay, the only substantive guidelines were that students should be reflective about the experience—from both their own perspective and that of the person whom they assisted in completing an advance directive. Pedagogically, these essays were used to facilitate small group discussion, and students were told that once they had been credited for turning in their essays, names would stripped from the essays and no penalty assigned for critical comments. Three investigators independently read each of the essays (range = 300–700 words) and through an iterative process (reading and rereading to identify words or phrases that captured distinctive domains and then discussing these domains to assure they were unique) collectively identified themes. The investigators then independently coded each essay, and reached consensus with regard to thematic coding for all the essays. Two additional researchers reviewed and coded 30% of the essays to assure agreement and accuracy, and for essays on which there was any disagreement (n = 7), all five researchers discussed the essay until consensus on coding was reached. Results Of 89 third-year students, 64 completed essays about their experiences with advance care planning, the remaining 25 having been on ‘‘away’’ rural health electives or otherwise unavailable. The individuals whom students recruited for this exercise included patients (38%); parents (20%), spouses/ significant others (20%), friends (11%), and other family members (10%). Investigators identified four distinct thematic categories that emerged from the medical student essays: 1) students’ personal experiences with advance care planning;

LEVI ET AL. 2) participants’ experiences; 3) recommendations for practice regarding advance care planning; and 4) feedback about the MYWK program. These four categories are described in detail below. Experiences of medical students The most common thematic category identified was how emotionally challenging students found the experience of helping another person with advance care planning. This was particularly true for students who helped a family member, which may not be surprising given the multilayered nature of such relationships.  ‘‘It was a much more intimate discussion than I was ex-

pecting.’’  ‘‘My parents have now both changed their AD so that I am

the proxy. It was a frightening feeling of responsibility, but also pride that they felt secure and safe with me.’’  ‘‘I interviewed my grandmother for this assignment, which was somewhat emotional, since my grandfather passed away this year.’’  ‘‘This was undoubtedly a difficult and emotional topic to approach. I have always had a general sense of what my parents would desire and I am relieved that I was fairly correct.’’ The emotional nature of students’ experience did not, however, detract from their satisfaction with the exercise.  ‘‘The entire exercise was helpful to get a sense of what an

Advance Directive entails and what are the kinds of things one should be thinking about with our patients.’’  ‘‘By actually working through an advanced [sic] directive, I was able to learn about specific end-of-life scenarios where difficult medical decisions needed to be made, as well as discussing the pros and cons of the various options in a balanced objective manner.’’  ‘‘These exercises are very helpful for students because practice is the only way that doctors can become experienced and improve their skills in dealing with difficult and uncomfortable situations.’’ Another aspect of students’ experience involved the difference between students’ expectations regarding advance care planning and the actual discussions they had with participants. As with many physicians in practice, students frequently were surprised by participants’ openness to discuss issues regarding end-of-life care.  ‘‘To [my] great surprise, my mother was very open and

willing to sit and talk about what her end-of-life plans should be.’’  ‘‘Ultimately my mother surprised me, by telling me how comforting the discussion was for her.’’  ‘‘One aspect that I did not anticipate about our discussion was my difficulty staying objective.’’  ‘‘I didn’t think it would be so complicated a discussion.’’ Students were also surprised by participants’ actual views regarding end-of-life care and what they considered to be important.  ‘‘I now have a better idea of what her wishes would actually

be; it was an eye-opening experience to realize that I did not know them already.’’

EXERCISE IN ADVANCE CARE PLANNING  ‘‘It introduced many concepts and questions about [my fa-

ther’s] values/wishes that he had not considered before, which we both appreciated.’’ This was true even (or perhaps especially) when students were working with a family member or close friend.  ‘‘I have a far better sense of my husband’s wishes after com-

pleting this exercise.’’  ‘‘I thought I understood my sister’s values but now I can be a

better spokesperson for her.’’ In particular, the risk of wrongly predicting another’s wishes was a key learning point.  ‘‘I was surprised about his preferences even though I think I

know him fairly well. This just goes to show how important such documents can be—no matter how well someone knows the patient they can never be the perfect surrogate decision maker.’’

1525 In other cases, this discomfort manifested in expressions of sadness,  ‘‘The experience of working through the advance directive

program was very trying. She found herself in tears at the end when considering whether she would prefer to be buried or cremated, because thinking about death and losing loved ones is very sad.’’ or fear,  ‘‘These questions were scary; no one wants to think about

tangible diseases when they are healthy.’’ or annoyance,  ‘‘It was difficult to address death and dying. He felt especially

bothered by questions that addressed losing mental capacity and the possibility of living in a nursing home.’’ or anger.

Experiences of interviewees A second thematic category involved participants’ experiences with advance care planning. On the whole, students reported that participants found the exercise both valuable and comforting.  ‘‘Overall, my mother felt that the exercise was very beneficial

because she was able to really think about what is important to her in life and she felt comfort in the fact that I now know.’’  ‘‘My husband was comforted to know that his wishes were now written down and there were fewer chances for misunderstandings.’’  ‘‘My patient was very comfortable by the end of the session. She was glad that she had time to think about end-of-life issues when it wasn’t eminent [sic].’’  ‘‘At the end of the session my mother stated that she felt a little more at ease with her life now that she addressed these particular concerns.’’ That said, students reported that some participants appeared unprepared to address the issues raised in advance care planning,  ‘‘While completing the durable power of attorney for health

care, I found that he had not given much thought and was unprepared to answer many of the topics raised during our discussion.’’ and this sometimes created tension within the interaction.  ‘‘The patient agreed to engage in the discussion, but she did not

seem prepared to answer my specific questions, and did not seem delighted by my asking these questions. [She] remained calm and told me to continue, but not in a pleasant demeanor at all.  ‘‘She gave very short answers and I believe that she felt very upset that I had even brought up such questions. My interpretation was that my patient sees herself as a very healthy woman and that the thought of dying, without any chronic issues, was something she has not thought about or prepared for.’’

 ‘‘When I sat down with [my father],.he quickly became ir-

ritated. He refused to answer many of the questions, claiming the questions were too simplistic. For example, in response to ‘If I could not walk but could get around in a wheelchair, I would find my life.acceptable, acceptable but difficult, worth living but just barely, not worth living, or not sure,’ he frustratingly exclaimed that the question was ‘stupid’ and he did not understand why he had to choose an answer.’’ Students responded that some participants appeared to have difficulty relating to parts of the exercise because the participants perceived themselves to be too young to address end-of-life issues:  ‘‘I think.that she viewed the tool as somewhat pointless for

her—you know to talk about end of life when she is so young.’’  ‘‘It was difficult to think about the hospice and palliative care options because they are so far from her reality as a young, healthy person.’’ In other cases, students reported that participants’ difficulty relating to the advance care planning exercise had more to do with cultural differences—particularly as they concerned either the need for, or the process of, end-of-life decision making.  ‘‘She stated that she didn’t ever really think about needing an

advance directive because it’s not something that Persian people do. The family knows what is right and they just decide.’’  ‘‘Being a Sri Lankan woman who had spent the majority of her adult life in a developing nation, she was not aware of the existence of advance directives.’’  ‘‘My mother’s initial reaction to my request to create an advance directive was one of disbelief. She did not understand the need for such a document or such extensive planning. In our culture, the entire extended family is usually involved in making certain decisions, especially when it comes to health care. She doesn’t see it as her choice.’’

In some cases, participants’ discomfort resulted in evasive responses.  ‘‘Once I brought up the topic, she immediately became un-

comfortable and kept delaying our conversation for another time, saying things like ‘can we talk about this later’.’’

Recommendations for actual practice The third thematic category involved students’ reflections about either the practice of advance care planning or the value

1526 of the MYWK tool for facilitating this process. In particular, many students observed that when patients complete their advance directive with a loved one present, the result is better communication about what the individual actually values and believes and wants.  ‘‘I would recommend they fill the advance directive out with

another family member, close friend, or relative present. In this way they will have an opportunity for discussion with their loved one about their choices.’’  ‘‘The appointed surrogate should be present [when making the advance directive] because that would give them better insight into the patient’s true wishes.’’ Many students observed in their essays that there is great value in having physicians (or medical students) work with patients to create advance directives.

LEVI ET AL. students commented that the exercise and the MYWK decision aid, itself, were valuable resources for everyone who will be involved in advance care planning.  ‘‘Programs like this can be a great starting point and can

assure that the patient’s wishes are clear and known to the key decision makers.’’  ‘‘I thought the tool was helpful in that it essentially did much of the thinking for patients. That is, it clearly established the scale of options available regarding each aspect of end-of-life care, from one extreme to the other, forcing patients to consider the nuances between them.’’  ‘‘A tool such as this, with comprehensive teaching and background information as a springboard for physicianpatient discussions, provides a cost-effective and time-sensitive approach to addressing much needed and too often lapsed topics of concern.’’

 ‘‘Having a physician involved with the shaping of an advance

directive would help avoid the use of vague terms and unclear wishes and thus improve its utility when it is needed.’’  ‘‘Discussing advanced [sic] directives with patients is useful. At the very least it may spark a conversation between patient and doctor about potential life stressors, family burdens, or opinions on death and dying. Certain parts of the advanced [sic] directive require physician explanation—in particular, potential interventions and chances for survival.’’  ‘‘Having a medical professional directly available would help patients to get reliable answers to questions they had which were not answered by the exercise. The professional could also serve as a sounding board for the patient to think over what his own values and preferences are, so that he can make the most informed decisions possible.’’ That said, students also commented that the process was so time-consuming they wondered how physicians could possibly go through all the necessary steps with so many patients needing to create an advance directive. Other students saw creating an advance directive as an exercise that was important for patients to accomplish on their own in preparation for having a subsequent discussion with a health care professional.  ‘‘By allowing patients to do this outside of the office,

you.allow them to entertain their thoughts in an unbiased environment and make decisions that they truly feel are right for themselves. It is then essential for their practitioner or another trained individual to review the questionnaire with the patient to ensure that they do, in fact, understand the terminology, what their decisions will mean in reality when implemented, and that they are not left with any unanswered questions.’’

Feedback/Specific comments on the tool The fourth thematic category concerned students’ feedback about the advance care planning tool itself, which was generally very positive. They found MYWK user-friendly, straightforward, clear, and extremely valuable for both themselves and participants. Some students thought MYWK was too long, and in certain places too vague or hypothetical; and some expressed concern that the tool required too high a level of health literacy to be used on its own without a health professional providing guidance and explanation. But most

Discussion Use of the online MYWK advance directive program provided a valued learning experience for third-year medical students. In addition to providing information about lifeor-death decisions, MYWK helped students better appreciate the process of engaging others in advance care planning and helped students further develop communications skills. Although the structure of this learning experience was not set up to formally evaluate pre/post-changes in knowledge or skills, it did include structured debriefings as part of the ‘‘Doctoring’’ course. Small group sessions co-facilitated by an experienced physician-educator and psychosocial clinician (PhD psychologist, psychiatrist, or social worker) helped prepare students for their advance care planning encounter as well as for reflectively examining their experience. The essays reported on here were completed prior to a session during which students discussed the professional and interpersonal challenges of engaging others in discussions about advance care planning. These debriefing sessions were not recorded or analyzed; however, the facilitators reported that students expressed a deeper appreciation of the dynamics of advance care planning discussions, and greater confidence in their ability to engage in such discussions in the future. Specifically, students learned that conversations about endof-life medical care are often emotionally charged, and can elicit a variety of complex responses that one must be prepared to handle sensitively and professionally. Students learned about the importance of communicating in simple, honest, and direct language. Students also learned that the reality of advance care planning can be very different from people’s expectations, be they patients or health care providers. Through this exercise, students came to understand practical issues surrounding advance care planning, further honed their teaching and advocacy skills, and developed attitudes that they can carry forward into their practice. This is a particularly valuable lesson for students nearing the end of medical school, as it is often in residency and fellowship that doctors routinely engage with gravely ill patients and their families. The interactive nature of the exercise is crucial for helping students develop the interpersonal skills for handling discussions about death and dying. What is less clear are the advantages and disadvantages of having students engage family members or friends for this exercise. For

EXERCISE IN ADVANCE CARE PLANNING some students, the intimacy afforded by long-standing personal relationships imbued the interaction with added meaning/gravity. But in doing so it also introduced an emotional overlay that typically is not part of physicians’ professional encounters with patients. The logistical challenges of recruiting a true ‘‘patient’’ for each student are what led us to permit students to work with family and friends, but results may have differed had participants been limited to individuals with whom students did not have a preexisting intimate relationship. Conclusion The results of our study should encourage other medical school faculty to develop interactive learning exercises for advance care planning. Students in the present study not only reported feeling more prepared to engage in advance care planning with others, but also expressed appreciation for the opportunity to use an online guide to gain first-hand experience in conducting these conversations with others. Online decision aids such as MYWK can provide health professionals with a structure for engaging in discussions about complex and often emotionally charged issues such as advance care planning. When combined with a subsequent reflective discussion, an exercise of this sort can help students achieve applied active learning in ways that will influence their practice for years to come. Author Disclosure Statement Two of the authors (BHL and MJG) have intellectual property and copyright interests for the MYWK decision aid used for this study. To encourage individuals to reflectively and systematically engage in advance care planning regarding end-of-life medical decisions, it is anticipated that MYWK will be made available free of charge for general use. However, users who wish to archive, revise, and electronically transmit advance directive documents will be charged a modest fee. References 1. Emanuel LL, Danis M, Pearlman RA, Singer PA: Advance care planning as a process: Structuring the discussions in practice. J Am Geriatr Soc 1995;43:440–446. 2. Shalowitz DI, Garrett-Mayer E, Wendler D: The accuracy of surrogate decision makers: A systematic review. Arch Intern Med 2006;166(5):493–497. 3. Fagerlin A, Ditto PH, Danks JH, Houts RM, Smucker WD: Projection in surrogate decisions about life-sustaining medical treatments. Health Psychol 2001;20:166–175. 4. Fagerlin A, Schneider CE: Enough. The failure of the living will. Hastings Cent Rep 2004;34:30–42.

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Address correspondence to: Benjamin H. Levi, MD, PhD Departments of Humanities and Pediatrics Penn State College of Medicine Hershey, PA 17033 E-mail: [email protected]

An interactive exercise in advance care planning for medical students.

With the growing need to train medical professionals how to engage their patients in advance care planning, this study examines medical students' expe...
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