An Interactive Exercise in Advance CarePlanning 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

Abstract

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

Introduction

Physicians and other health care providers arewell aware that when life-or-death medical decisions

must to be made, most patients (*75%) lack decision-makingcapacity.1 It is also widely recognized that advance careplanning offers people the opportunity to not only reflect onand articulate their wishes for future medical treatment, butalso to designate a proxy decision maker and communicatetheir values/wishes to loved ones and others.1 Doing so in-creases the likelihood that surrogate decision makers maketreatment choices that are consistent with the person’swishes,2–4 and, equally as important, helps prevent lovedones from being burdened with unintended financial stress,guilt, and confusion.5

In the United States, there is a general expectation thatwhen a patient’s wishes regarding end-of-life care are unclear,life-sustaining medical treatment will be provided unless ithas no chance of forestalling death. Although in many cir-cumstances, such ‘‘erring on the side of life’’ is a reasonabledefault approach, it can also result in unwanted and bur-densome 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 cir-cumstances; and because fewer than 30% of adults spell outtheir wishes for end-of-life care,6,7 the majority of people are atrisk for receiving medical interventions they would not ac-tually want.

Given the emphasis Western medicine places on patientautonomy, it would seem natural for doctors to routinelyencourage patients to express their wishes before life-of-deathcircumstances arise. But typically they do not, whether due toother priorities or hesitation to address the topic.8–10 Rather,doctors often wait for patients to raise the subject, while thepatients wait for some indication from the doctor that it’s timefor a conversation.11 Contributing to this standoff is the factthat many doctors report feeling unprepared to conduct sucha discussion, having had little preparation for advance careplanning during their training.12,13 Additionally, cultural andlegal norms, as well as insurance reimbursement and the‘‘hidden curriculum’’ in medical training tend to discour-age nonaggressive, non-cure oriented approaches to life-threatening conditions, the result being that such discussionsare often avoided.14,15

Most initiatives for addressing this situation are aimed atpatients.16 We ourselves (BHL and MJG) have created such an

1Departments of Humanities and Pediatrics, Penn State College of Medicine, Hershey, Pennsylvania.2Office of the Dean, 3School of Medicine, 4Department of Internal Medicine, University of California, Davis, California.Accepted July 19, 2013.

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

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initiative: an interactive, computer-based tool that we devel-oped to help patients with advance care planning: MakingYour Wishes Known: Planning Your Medical Future (MYWK).17

In a prior study, we demonstrated that MYWK outperformsstandard advance care planning tools for improving medicalstudents’ knowledge about advance care planning.18 To betterunderstand the value of using MYWK as part of doctors’training, the present study qualitatively examines the expe-rience of third-year medical students who used this computer-based decision aid to help another person complete anadvance directive.

By way of overview, MYWK guides users through theprocess of advance care planning, providing tailored educa-tion, values clarification exercises, and a decision-making al-gorithm that generates a personalized advance directiveintended to document an individual’s values/goals/prefer-ences and to help others make treatment decisions in the eventthat the person cannot speak for him- or herself. 17 (The pro-gram can be found at www.makingyourwishesknown.com.)

Methods

During October 2010, third-year medical students enrolledin the required ‘‘Doctoring’’ curriculum at the University ofCalifornia, Davis (UC Davis) completed an interactive edu-cational module on the end of life that involved structuredinteractions with standardized patients as well as preparatoryreadings. Each student was also required to help a consentingadult (patient, acquaintance, or relative) engage in advancecare planning using the online tool, MYWK, and then write anessay about the experience. For the essay, the only substantiveguidelines were that students should be reflective about theexperience—from both their own perspective and that of theperson whom they assisted in completing an advance direc-tive. Pedagogically, these essays were used to facilitate smallgroup discussion, and students were told that once they hadbeen credited for turning in their essays, names would strip-ped from the essays and no penalty assigned for criticalcomments.

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 thatcaptured distinctive domains and then discussing these do-mains to assure they were unique) collectively identifiedthemes. The investigators then independently coded eachessay, and reached consensus with regard to thematic codingfor all the essays. Two additional researchers reviewed andcoded 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 oncoding was reached.

Results

Of 89 third-year students, 64 completed essays about theirexperiences with advance care planning, the remaining 25having been on ‘‘away’’ rural health electives or otherwiseunavailable. The individuals whom students recruited for thisexercise included patients (38%); parents (20%), spouses/significant others (20%), friends (11%), and other familymembers (10%). Investigators identified four distinct thematiccategories that emerged from the medical student essays:1) students’ personal experiences with advance care planning;

2) participants’ experiences; 3) recommendations for practiceregarding advance care planning; and 4) feedback about theMYWK program. These four categories are described in detailbelow.

Experiences of medical students

The most common thematic category identified was howemotionally challenging students found the experience ofhelping another person with advance care planning. This wasparticularly true for students who helped a family member,which may not be surprising given the multilayered nature ofsuch relationships.

� ‘‘It was a much more intimate discussion than I was ex-pecting.’’

� ‘‘My parents have now both changed their AD so that I amthe proxy. It was a frightening feeling of responsibility, butalso pride that they felt secure and safe with me.’’

� ‘‘I interviewed my grandmother for this assignment, whichwas somewhat emotional, since my grandfather passed awaythis year.’’

� ‘‘This was undoubtedly a difficult and emotional topic toapproach. I have always had a general sense of what myparents would desire and I am relieved that I was fairlycorrect.’’

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 anAdvance Directive entails and what are the kinds of thingsone should be thinking about with our patients.’’

� ‘‘By actually working through an advanced [sic] directive, Iwas able to learn about specific end-of-life scenarios wheredifficult medical decisions needed to be made, as well as dis-cussing the pros and cons of the various options in a balancedobjective manner.’’

� ‘‘These exercises are very helpful for students because practiceis the only way that doctors can become experienced andimprove their skills in dealing with difficult and uncomfort-able situations.’’

Another aspect of students’ experience involved the dif-ference between students’ expectations regarding advancecare planning and the actual discussions they had with par-ticipants. As with many physicians in practice, students fre-quently were surprised by participants’ openness to discussissues regarding end-of-life care.

� ‘‘To [my] great surprise, my mother was very open andwilling to sit and talk about what her end-of-life plansshould be.’’

� ‘‘Ultimately my mother surprised me, by telling me howcomforting the discussion was for her.’’

� ‘‘One aspect that I did not anticipate about our discussionwas my difficulty staying objective.’’

� ‘‘I didn’t think it would be so complicated a discussion.’’

Students were also surprised by participants’ actual viewsregarding end-of-life care and what they considered to beimportant.

� ‘‘I now have a better idea of what her wishes would actuallybe; it was an eye-opening experience to realize that I did notknow them already.’’

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� ‘‘It introduced many concepts and questions about [my fa-ther’s] values/wishes that he had not considered before, whichwe both appreciated.’’

This was true even (or perhaps especially) when studentswere 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 abetter spokesperson for her.’’

In particular, the risk of wrongly predicting another’swishes was a key learning point.

� ‘‘I was surprised about his preferences even though I think Iknow him fairly well. This just goes to show how important suchdocuments can be—no matter how well someone knows thepatient they can never be the perfect surrogate decision maker.’’

Experiences of interviewees

A second thematic category involved participants’ experi-ences with advance care planning. On the whole, studentsreported that participants found the exercise both valuableand comforting.

� ‘‘Overall, my mother felt that the exercise was very beneficialbecause she was able to really think about what is importantto her in life and she felt comfort in the fact that I now know.’’

� ‘‘My husband was comforted to know that his wishes werenow written down and there were fewer chances for misun-derstandings.’’

� ‘‘My patient was very comfortable by the end of the session.She was glad that she had time to think about end-of-lifeissues when it wasn’t eminent [sic].’’

� ‘‘At the end of the session my mother stated that she felt alittle more at ease with her life now that she addressed theseparticular concerns.’’

That said, students reported that some participants ap-peared unprepared to address the issues raised in advancecare planning,

� ‘‘While completing the durable power of attorney for healthcare, I found that he had not given much thought and wasunprepared to answer many of the topics raised during ourdiscussion.’’

and this sometimes created tension within the interaction.

� ‘‘The patient agreed to engage in the discussion, but she did notseem prepared to answer my specific questions, and did not seemdelighted by my asking these questions. [She] remained calm andtold me to continue, but not in a pleasant demeanor at all.

� ‘‘She gave very short answers and I believe that she felt veryupset that I had even brought up such questions. My interpre-tation was that my patient sees herself as a very healthy womanand that the thought of dying, without any chronic issues, wassomething she has not thought about or prepared for.’’

In some cases, participants’ discomfort resulted in evasiveresponses.

� ‘‘Once I brought up the topic, she immediately became un-comfortable and kept delaying our conversation for anothertime, saying things like ‘can we talk about this later’.’’

In other cases, this discomfort manifested in expressions ofsadness,

� ‘‘The experience of working through the advance directiveprogram was very trying. She found herself in tears at the endwhen considering whether she would prefer to be buried orcremated, because thinking about death and losing loved onesis very sad.’’

or fear,

� ‘‘These questions were scary; no one wants to think abouttangible diseases when they are healthy.’’

or annoyance,

� ‘‘It was difficult to address death and dying. He felt especiallybothered by questions that addressed losing mental capacityand the possibility of living in a nursing home.’’

or anger.

� ‘‘When I sat down with [my father],.he quickly became ir-ritated. He refused to answer many of the questions, claimingthe questions were too simplistic. For example, in response to‘If I could not walk but could get around in a wheelchair, Iwould find my life.acceptable, acceptable but difficult, worthliving but just barely, not worth living, or not sure,’ hefrustratingly exclaimed that the question was ‘stupid’ and hedid not understand why he had to choose an answer.’’

Students responded that some participants appeared tohave difficulty relating to parts of the exercise because theparticipants perceived themselves to be too young to addressend-of-life issues:

� ‘‘I think.that she viewed the tool as somewhat pointless forher—you know to talk about end of life when she is soyoung.’’

� ‘‘It was difficult to think about the hospice and palliative careoptions because they are so far from her reality as a young,healthy person.’’

In other cases, students reported that participants’ diffi-culty relating to the advance care planning exercise had moreto do with cultural differences—particularly as they con-cerned either the need for, or the process of, end-of-life deci-sion making.

� ‘‘She stated that she didn’t ever really think about needing anadvance directive because it’s not something that Persianpeople do. The family knows what is right and they just de-cide.’’

� ‘‘Being a Sri Lankan woman who had spent the majority ofher adult life in a developing nation, she was not aware of theexistence of advance directives.’’

� ‘‘My mother’s initial reaction to my request to create an ad-vance directive was one of disbelief. She did not understandthe need for such a document or such extensive planning. Inour culture, the entire extended family is usually involved inmaking certain decisions, especially when it comes to healthcare. She doesn’t see it as her choice.’’

Recommendations for actual practice

The third thematic category involved students’ reflectionsabout either the practice of advance care planning or the value

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of the MYWK tool for facilitating this process. In particular,many students observed that when patients complete theiradvance directive with a loved one present, the result is bettercommunication about what the individual actually valuesand believes and wants.

� ‘‘I would recommend they fill the advance directive out withanother family member, close friend, or relative present. Inthis way they will have an opportunity for discussion withtheir loved one about their choices.’’

� ‘‘The appointed surrogate should be present [when making theadvance directive] because that would give them better insightinto the patient’s true wishes.’’

Many students observed in their essays that there is greatvalue in having physicians (or medical students) work withpatients to create advance directives.

� ‘‘Having a physician involved with the shaping of an advancedirective would help avoid the use of vague terms and unclearwishes 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 patientand doctor about potential life stressors, family burdens, oropinions 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 helppatients to get reliable answers to questions they had whichwere not answered by the exercise. The professional could alsoserve as a sounding board for the patient to think over whathis own values and preferences are, so that he can make themost informed decisions possible.’’

That said, students also commented that the process was sotime-consuming they wondered how physicians could pos-sibly go through all the necessary steps with so many patientsneeding to create an advance directive. Other students sawcreating an advance directive as an exercise that was impor-tant for patients to accomplish on their own in preparation forhaving a subsequent discussion with a health care profes-sional.

� ‘‘By allowing patients to do this outside of the office,you.allow them to entertain their thoughts in an unbiasedenvironment and make decisions that they truly feel are rightfor themselves. It is then essential for their practitioner oranother trained individual to review the questionnaire withthe patient to ensure that they do, in fact, understand theterminology, what their decisions will mean in reality whenimplemented, and that they are not left with any unansweredquestions.’’

Feedback/Specific comments on the tool

The fourth thematic category concerned students’ feedbackabout the advance care planning tool itself, which was gen-erally very positive. They found MYWK user-friendly,straightforward, clear, and extremely valuable for boththemselves and participants. Some students thought MYWKwas too long, and in certain places too vague or hypothetical;and some expressed concern that the tool required too high alevel of health literacy to be used on its own without a healthprofessional providing guidance and explanation. But most

students commented that the exercise and the MYWK deci-sion aid, itself, were valuable resources for everyone who willbe involved in advance care planning.

� ‘‘Programs like this can be a great starting point and canassure that the patient’s wishes are clear and known to the keydecision makers.’’

� ‘‘I thought the tool was helpful in that it essentially did muchof the thinking for patients. That is, it clearly established thescale of options available regarding each aspect of end-of-lifecare, from one extreme to the other, forcing patients to con-sider the nuances between them.’’

� ‘‘A tool such as this, with comprehensive teaching andbackground information as a springboard for physician-patient discussions, provides a cost-effective and time-sensitiveapproach to addressing much needed and too often lapsedtopics of concern.’’

Discussion

Use of the online MYWK advance directive program pro-vided a valued learning experience for third-year medicalstudents. In addition to providing information about life-or-death decisions, MYWK helped students better appreciatethe process of engaging others in advance care planning andhelped students further develop communications skills.

Although the structure of this learning experience was notset up to formally evaluate pre/post-changes in knowledge orskills, it did include structured debriefings as part of the‘‘Doctoring’’ course. Small group sessions co-facilitated by anexperienced physician-educator and psychosocial clinician(PhD psychologist, psychiatrist, or social worker) helpedprepare students for their advance care planning encounter aswell as for reflectively examining their experience.

The essays reported on here were completed prior to asession during which students discussed the professional andinterpersonal challenges of engaging others in discussionsabout advance care planning. These debriefing sessions werenot recorded or analyzed; however, the facilitators reportedthat students expressed a deeper appreciation of the dynamicsof advance care planning discussions, and greater confidencein their ability to engage in such discussions in the future.

Specifically, students learned that conversations about end-of-life medical care are often emotionally charged, and canelicit a variety of complex responses that one must be pre-pared to handle sensitively and professionally. Studentslearned about the importance of communicating in simple,honest, and direct language. Students also learned that thereality of advance care planning can be very different frompeople’s expectations, be they patients or health care pro-viders. Through this exercise, students came to understandpractical issues surrounding advance care planning, furtherhoned their teaching and advocacy skills, and developed at-titudes that they can carry forward into their practice.

This is a particularly valuable lesson for students nearingthe end of medical school, as it is often in residency and fel-lowship that doctors routinely engage with gravely ill pa-tients and their families. The interactive nature of the exerciseis crucial for helping students develop the interpersonal skillsfor handling discussions about death and dying. What is lessclear are the advantages and disadvantages of having stu-dents engage family members or friends for this exercise. For

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some students, the intimacy afforded by long-standing per-sonal relationships imbued the interaction with addedmeaning/gravity. But in doing so it also introduced anemotional overlay that typically is not part of physicians’professional encounters with patients. The logistical chal-lenges of recruiting a true ‘‘patient’’ for each student are whatled us to permit students to work with family and friends, butresults may have differed had participants been limited toindividuals with whom students did not have a preexistingintimate relationship.

Conclusion

The results of our study should encourage other medicalschool faculty to develop interactive learning exercises foradvance care planning. Students in the present study not onlyreported feeling more prepared to engage in advance careplanning with others, but also expressed appreciation for theopportunity to use an online guide to gain first-hand experi-ence in conducting these conversations with others. Onlinedecision aids such as MYWK can provide health professionalswith a structure for engaging in discussions about complexand often emotionally charged issues such as advance careplanning. When combined with a subsequent reflective dis-cussion, an exercise of this sort can help students achieveapplied active learning in ways that will influence theirpractice for years to come.

Author Disclosure Statement

Two of the authors (BHL and MJG) have intellectualproperty and copyright interests for the MYWK decision aidused for this study. To encourage individuals to reflectivelyand systematically engage in advance care planning regard-ing end-of-life medical decisions, it is anticipated that MYWKwill be made available free of charge for general use. How-ever, users who wish to archive, revise, and electronicallytransmit advance directive documents will be charged amodest fee.

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Address correspondence to:Benjamin H. Levi, MD, PhD

Departments of Humanities and PediatricsPenn State College of Medicine

Hershey, PA 17033

E-mail: BHLEVI@psu.edu

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