Filmed over a two year period, the video captures the student-patient relationships, students' thoughts on learning about palliative care in this personal way, and teachers' reflections on structuring such experiential learning. The viewer revisits these same students in their third year of medical training, the students' first intensive clinical year, and listens to them reflect on how they now understand their earlier experience. This longitudinal approach also allows viewers to discover what happened to the patients. The stories in this 35-minute video evoke strong feelings, and this emotional impact offers a series of highly "teachable" moments.

In this brief guide, we suggest ways medical educators might use the video, both to enhance students' comfort and skill caring for dying patients and, more generally, to enhance their ability to forge meaningful relationships with patients, no matter where patients are in their disease trajectory. In short, it is an excellent tool for teaching about care of the dying and for fostering the professional development of compassionate physicians.

The activities we describe below are ideally suited for small group discussion, but can be adapted for use in larger classes. Section C includes a bibliography of articles on related topics, and Section D provides hotlinks to other relevant websites.

If you are interested in developing a course similar to the one described in the video, contact Wendy Katz, MPH, at the Harvard Medical School Center for Palliative Care, via email at wkatz@partners.org or by phone at (617) 724-9509.

Overview of Recommended Activities

Ideally, you should set aside approximately two hours: 35 minutes to show the videotape, 15 minutes for the free-writing exercise described below and 60 minutes for the discussion. The bibliography in Section C can be used for assigning additional readings, and you might want to schedule an additional class session to discuss some of these readings. However, we strongly recommend that students read the recommended articles only after they have written and talked amongst themselves first about the issues raised by the video. Presenting expert opinion too soon will short-circuit the teaching opportunities afforded by the video.

A. Writing Personal Reactions Privately. The first activity we recommend is writing down one's reactions on paper. Such "free writes" are uncensored writing for the author's eyes only. Identifying and naming one's personal reactions and feelings is an essential piece of developing personal awareness. And, self-awareness—the capacity to reflect on one's own experience and to understand how one's own thoughts and feelings affect the dynamic of any relationship—is essential for developing exemplary communication skills and effective patient-doctor relationships.

B. Talking Points for Small Group Discussion. Second, we present a number of "talking points" to start discussion on key topics, which the video allows a skillful group leader to address. These topics are central both to the care of patients with a serious life-threatening illness and to the attitudes and skills necessary for building strong patient-doctor relationships. For each talking point, we summarize the event(s) in the video that provide a good launching point for that topic and offer specific questions that faculty can use to structure the discussion.

C. Reading What Others Have to Say. This guide also includes a brief, highly selected, set of references students can read to explore topics raised by the video and the small group discussion in greater depth. As we caution above, it will foreclose self-reflection and the opportunities for professional growth that the video provides, if discussion leaders were to develop a didactic lesson and offer "answers." Thus, these readings are not offered as the "last word" on the topics, but rather are presented as resources to foster further discussion, foils for students to sharpen and explore their own arguments, and information to encourage students to frame their own experiences and perceptions in new ways.

D. Hotlinks to Other Relevant Resources. A brief list of websites that may be useful to medical and nursing faculty teaching students about death and dying.

Before You Begin: A Few Thoughts on Leading These Kinds of Discussions

For students to feel receptive to small group discussions and to engage authentically, there need to be ground rules that build group trust. For example:

• Use "I" statements to describe one's own experience. Avoid critiquing the experience of others in judgemental ways.
• Set rules about confidentiality at the outset, such as in AA: "What's said here, stays here." Students need to know that if they open up and share vulnerable experiences in a small group, those confidences won't become gossip.
• Model a genuine attitude of curiosity and respect for students' experience. A cookbook approach to establishing authentic relationships won't work. Suggestions can help a person find a mode that fosters this kind of conversation, but the leader must establish rapport and trust in a way that is congruent with who he or she is.
• Think about airtime and establish some kind of mechanism so that talkative students don't monopolize it, and such that quieter students are also encouraged to speak. Doing some activities in pairs can help assure that all students speak and are heard.

In the domain of human experience, there is no "one right answer." However, there are more and less effective ways to communicate, establish rapport, and develop ethical and professional behavior. The leader needs to establish a balance between sharing this expertise via his or her responses and at the same time creating a respectful space, in which students' own personal experience cannot be trumped. If it is clear that students are reacting defensively, then the leader can be curious about those defensive reactions. However, group leaders should avoid pouncing on students if they wish to create an atmosphere of trust and growth!

A. Writing Personal Reactions Privately

Free writing is a well-established technique for professional education, particularly when the educational objective is to promote personal development, empathy, communication skills, and psychosocial insight. Therefore, we recommend that medical school faculty and medical students alike, begin by writing down their reactions in a private notebook which may or may not be shared with others at a later point. This step of recognizing and naming one's reactions and feelings is important because clinicians who are self-aware are more likely to be able to identify empathically with patients' and families' feelings.

The act of writing requires thought to move from an inchoate state to a more articulated form, and as such, is a great way to capture the waterfall of reactions such a film can set off. Then the writer can decide if and how he or she wants to share these private reactions. The value of this kind of exercise is in the doing. Sharing these responses can be valuable in a group where trust has been established, but should always be at the author's discretion.

• Choose two or three of the questions listed below to prompt the free-writing exercise. Put them on an overhead or on the board. Give students ten minutes to jot down their reactions. Be clear that these written notes will not be shared, but that each student will be encouraged to pick one thing to talk about with another student at the end of the writing time.
• Encourage ten minutes of silence for the free write. Signal the seriousness of the activity, by engaging in your own writing at the same time.
• Ask students to share one reaction to the film with the person sitting next to them (2 minutes for each student, total of 4 minutes). Do not ask students to share their actual writing, unless they want to.

Questions to Encourage Free Writing

1. What moments in the film provoked a strong reaction? Describe your thoughts and feelings. Why do you think this scene provoked a strong reaction in you?
2. Did you identify with any of the care providers, students, patients or family members? If so, which ones? In what ways? What struck home?
3. Did you see your own family members or friends in any of the people in the film? Is so, which ones? In what ways?
4. What was the take home message for you of this film?
5. Has a family member or close friend of yours died? Has a member of your family or a friend suffered from a life-threatening illness? Have you suffered from a life-threatening illness? How did these experiences shape your reactions to the film?
6. Are there things you would like to do differently from what you observed in this film? Are there places you feel the medical students or doctors could have done a better job? Describe those instances and your suggestions.

B. Talking Points to Structure Small Group Discussion

Recall the situations in the video described below and use the questions we present here to explore students' interpretations and reactions to key topics. (It may take too much time and may not be necessary to actually rewind and re-show that segment. Viewers are likely to recall each of these moments, simply by bringing their attention to the relevant portion of the video.)

There are strong, specific values and ethical choices associated with each of the situations we have highlighted. Each question provided below is meant to be thought provoking. There is no one right answer. Rather, the benefit is in addressing the questions and grappling with the dilemmas they pose. Knowing oneself, one's own values and beliefs, is a first crucial step in the process of learning to negotiate effective relationships with patients. Grappling with these questions will reveal the students' underlying values and beliefs about what it is to be a doctor and should help students develop a sense of ethics that is congruent with professional mores.

You may choose the situations you want to focus on in the discussion. Alternatively, you might want students to pick the issues they found most striking. They probably will include some of the issues you would have selected yourself, but the discussion may be more learner-centered, if you open it first with an invitation for the students to name the issues that struck them as salient. If you allow students the opportunity to name the issues of interest to them first, you can probe their offerings with questions, such as, "What was striking about this interaction?" "Why did you choose it?" The suggestions we offer below can then be used to "fill in" or introduce issues the students have not thought about on their own.

Intimacy and "Appropriate" Distance

Patient Fred Margosian, who was paired with the medical student named Marat, talked about liking to know his doctor, saying something like: "I like to know them ... maybe they don't want to because it can get hard ..." Another medical student said, "I question the need to distance oneself" in discussing this same issue of determining what the "appropriate" distance is between physicians and their patients, especially those facing life-threatening illness. At the end of the film, Mrs. Margosian described the physician being at her husband's bedside and touching his leg, moments before he died—was that "appropriate" in your mind? What does her reaction to this closeness tell you? Other reactions?

Each of these students faces this question straight on, in deciding to get close to a patient who is dying by participating in this course. Do you believe these students benefited from this experience of becoming "close" with a patient who was, in fact, dying? How did this intimacy affect their professional development?

How close should physicians be to their patients?

How do you know where the boundaries should be?

What is the purpose of professional boundaries?

Can these boundaries be negotiated or breached in the service of healing? If so, when? Who should initiate such a shift?

What are the benefits and risks to establishing a genuine relationship with a patient?

What does a genuine relationship entail?

What is the difference between friendship and a professional relationship?

How is the patient-doctor relationship like/unlike a student-teacher relationship?

How do your feelings affect your professional judgement?

Self-disclosure

One example of how clinicians negotiate this continuum of intimacy-distance in establishing relationships with patients is around the issue of self-disclosure. In this video, one of the students had suffered from Hodgkins Disease five years earlier and so had undergone chemotherapy. She divulged this fact to her "patient" during an early visit.

What did you think of this interaction/instance of self-disclosure?

How did it go?

When is self-disclosure "appropriate" and when not? How do you know?

What are the feelings and reasoning behind your stance?

What are the risks and benefits to the physician? to the medical student? to the patient-doctor relationship? to the patient? to the quality of the care of the patient?

How do you know?

"Nothing left to do ..."

During his residency, Dr. Peter Marks observed that physicians stopped visiting patients who were dying because they felt there was "nothing left to do." He had a contrasting response. Dying patients galvanized his commitment to them. He described the value to staying with patients and continuing to attend to what can be done to ease suffering near the end of life. Dr. Andy Billings and Connie Dahlin, RN also alluded to what "doing something" can mean, and what it is that specialists in palliative care do.

What do physicians mean if they say: "There is nothing more we can do"?

What does this expression signal to patients and families?

Learning from Patients

Reflecting two years later on the timing of having taken the course during her first year of medical school, as opposed to during third year, Susan, one of the medical students in the course, asked: "Would I be receptive to her teaching [now]?"

What allows students to learn from patients?

What allows doctors to learn from patients?

What makes students more or less receptive?

Why do you think that Susan, in third year, feels that she might be less receptive to the patients' teaching at that point in her education?

What is your experience here?

Empowering the Patient and Family

Connie Dahlin, a nurse at Massachusetts General Hospital (MGH), spoke about empowering families as one of the key tasks for the palliative care team.

Do you agree? How so?

For faculty members: Have you ever felt torn between the needs of patients and the needs of their families? How do these tensions get played out?

What does it mean to empower families?

How do clinicians empower families?

How do you empower patients who are dying?

Do all patients want to be empowered?

How does one approach situations, in which it is clear that patients, families and clinicians hold conflicting values and beliefs?

Beliefs about treatment near the end of life

"Dying isn't the worst thing that can happen." —Connie Dahlin (Nurse) at MGH.

What is your experience here?

Retrospectively, Mrs. Margosian, wife of Fred Margosian said, " I wish we'd let him die sooner."

What do you make of this comment? Based on what you hear in the video, what happened during Fred Margosian's last days? This was clearly an anticipated death. How might it have been different?

"We help them to heal"

What does "healing" mean in the context of dying?

How do clinicians help dying patients heal?

What have you observed in your clinical training so far?

What is your experience of "healing?" in and outside of medical school?

Medical Student Experience of Dying Patients

One medical student, talking about his first patient dying, said: "There aren't a whole lot of outlets for emotions ... certainly no one asked me ... the night my patient was dying."

What kinds of outlets would be helpful?

What have you observed?

What has been your experience with dying patients?

What has been helpful to you? What does "helpful" mean here? What isn't "helpful"? What do you think/feel should occur around medical students' first experiences of patients dying?

Saying Goodbye/Endings

Beginnings and endings are important. These moments gain salience when we are dealing with people who are in the final phase of their lives. Many people avoid saying goodbye, without even acknowledging it, because it may raise uncomfortable questions, they feel they don't know what to say or it may simply be too painful.

In the video, we see the student who had Hodgkin's disease, bringing flowers and saying goodbye to her patient partner.

How did you react to this moment?

Did you feel it was a "good" goodbye?

Why did the teachers in the course make a point of having the students say goodbye to their patients? What was the benefit to the patient? To the student?

Probes for Teachers:

Do you say goodbye to patients? How? If not, why not?

Do you have any salient memories of patient goodbyes: a goodbye left unsaid, that you later regretted? Or, the opposite, a goodbye that meant a great deal?

Probes for Students:

What is the value of saying goodbye? To patients and families? To clinicians? To medical students?

What can you do to make goodbyes easier?

Bereavement/Contact with Families after death

Mrs. Margosian described how her husband's doctor contacted her after his death and her response to that contact.

Have you ever written a letter of condolence? What stops you? What makes it possible?

Time

Time is a crucial factor during medical training and later during residency and practice. All decry the lack of time. Medical students and residents often find their own basic functioning at risk due to overwhelming demands on their time.

How do real time constraints shape your thoughts about how to provide exemplary end-of-life care?

What is your experience of how time interacts with the ability to say goodbye, or to listen to patients and families? Any counter examples?

What strategies have you observed among experienced physicians to continue to practice "good" medicine in the context of real time constraints?

What have you observed about the quality of the interactions (even short ones) between mentor physicians and their patients?

The Role of Meaning and Patients' Quality of Life

Michael Gaies spoke to Kurt Wolf about the support network Mr. Wolf seemed to have in place, as he opened a conversation about how Mr. Wolf was doing. Mr. Wolf noted, "You forgot one thing. I want to write..."

What did you think of this interaction?

Are you aware of other examples where a task undone, or more broadly speaking, "meaning" has been key to a patient's survival or quality of life?

What can clinicians do to be aware of and use this potentially important resource?

The Role of Culture, Diversity within Culture, and the Role of Personality

Dr. Andy Billings made a comment about the role of culture and the wide range of differences among patients about what kind of care patients will want, how much patients want to really know about their diagnosis, etc. He said something to the effect of: "You have to ask patients..."

How do you know what the "right approach" will be?

Are there times when you don't want to ask patients about their preferences?

How do you negotiate these waters?

What signs can you look for from patients about how and whether to proceed?

Observation of and Lessons from Student-Patient Relationships

Another approach to some of these questions is to focus more on the relationship each student was able to develop with his or her patient. Go back and look at each student-patient relationship, one at a time. For each, ask the following questions:

• What qualities stand out in this relationship?
• How would you rate the student's comfort level?
• How would you rate the patient's comfort level? To what do you attribute the quality—anxiety, discomfort, ease—that you observe?
• What allows for comfort in this kind of a relationship?
• What is most important for these relationships to be successful? Is it comfort? Or something else?
• How are these relationships different from patient-doctor relationships?
• Are there elements that can transfer to patient-doctor relationships? Which ones?

C. Topics and Further Reading

This is a targeted, somewhat idiosyncratic list of references aimed at the needs of clinicians and medical students seeking to deepen their knowledge in these areas. It is not all-inclusive. We have not included many key topics, such as euthanasia and physician-assisted suicide, withdrawing and withholding treatment, and pain and symptom management, but rather focused on the topics Ready or Not brings to the fore.

Writing, Teaching, Learning, and Development

Belenky MF, Clinchy BM, Goldberger NR, Tarule JM. Women's Ways of Knowing: The Development of Self, Voice, and Mind. New York: Basic Books, 1986.

Block S, Billings JA. Nurturing humanism through teaching palliative care. Academi Medicine. 1998;73:763-5.

Coles R. The Call of Stories: Teaching and the Moral Imagination. Boston: Houghton Mifflin, 1989.

Elbow P. Writing without Teachers. London: Oxford University Press, 1973.

Hunter KM. Doctors' Stories: The Narrative Structure of Medical Knowledge. Princeton: Princeton University Press, 1991.

Kegan R. The Evolving Self: Problem and Process in Human Development. Cambridge: Harvard University Press, 1982.

Phillips A, Lipson A, Basseches M. Empathy and Listening Skills: A Developmental Perspective on Learning to Listen. In Interdisciplinary Handbook of Adult Lifespan Learning. JD Sinnott (ed.). Westport, CT: Greenwood Press, 1994, 301-324.

Schön DA. Educating the Reflective Practitioner. San Francisco: Jossey-Bass, 1987.

Schön DA. The Reflective Practitioner: How Professionals Think in Action. New York: Basic Books, 1983.

Communication, Truth Telling and Prognostication

Buckman R. How to Break Bad News. Baltimore: Johns Hopkins University Press, 1992.

Christakis NA. Death Foretold: Prophecy and Prognosis in Medical Care. Chicago: University of Chicago Press, 2000.

Christakis NA, Lamont EB. Extent and determinants of error in physicians' prognoses in terminally ill patients: Prospective cohort study. Western Journal of Medicine. 2000;172:310-313.

"Communication, Truth telling and Advance Care Planning." Innovations in End-of-Life Care. 1999;1(1), http://www.edc.org/lastacts The entire issue is devoted to this topic and includes a Read More page with targeted readings. Readers need to register (registration is free) in order to access these pages.

Curtis JR, Patrick DL, Caldwell ES, Collier AC. Why don't patients and physicians talk about end-of-life care? Barriers to communication for patients with Acquired Immunodeficiency Syndrome and their primary care clinicians. Archives of Internal Medicine. 2000;160:1690-6.

Fitch MI. How much should I say to whom? Journal of Palliative Care. 1994;10(3):90-100.

Freedman, B. 1993. Offering truth: One ethical approach to the uninformed cancer patient. Archives of Internal Medicine. 153(5):572-6.

Larson DG, Tobin DR. End-of-life conversations: Evolving practice and theory. JAMA. 2000;284:1573-8.

Lo B, Quill T, Tulsky J. Discussing palliative care with patients. Annals of Internal Medicine. 1999;130:744-9.

Ptacek JT, Eberhardt TL. Breaking bad news: A review of the literature. JAMA. 1996;276:496-502.

Solomon MZ. Why Are Advance Directives a Non-Issue Outside the United States? In Innovations in End-of-Life Care: Practical Strategies & International Perspectives, MZ Solomon, AL Romer, KS Heller (eds.). Larchmont, NY: Mary Ann Liebert, Inc, 2000, 13-18.

Solomon MZ. How physicians talk about futility: Making words mean too many things. Journal of Law, Medicine & Ethics. 1993;21(2):231-237.

Stone D, Patton B, Heen S. Difficult Conversations: How to Discuss What Matters Most. New York, NY: Penguin Books, 1999.

Storey P, Knight CF. UNIPAC Five: Caring for the Terminally Ill—Communication and the Physician's Role on the Interdisciplinary Team. American Academy of Hospice and Palliative Medicine Hospice/ Palliative Care Training for Physicians: A Self-Study Program. Dubuque, Iowa: Kendall/Hunt Publishing Co., 1998.

The AM, Hak T, Koëter G, van der Wal G. Collusion in doctor-patient communication about imminent death: an ethnographic study. BMJ. 2000;321:1376-81. Available online.

End-of-Life Care: A Few Key Resources

American Board of Internal Medicine. Caring for the Dying: Identification and Promotion of Physician Competency. Educational Resource Document. Philadelphia, PA: American Board of Internal Medicine, 1996. Copies available at: http://www.abim.org

Cassel CK, Foley KM. Principles for Care of Patients at the End of Life: An Emerging Consensus Among Specialties in Medicine. Milbank Memorial Fund, 1999. Copies available at: http://www.milbank.org/endoflife/

Committee on Care at the End of Life. Field MJ, Cassel CK (eds.). Approaching Death: Improving Care at the End of Life. Washington DC: Institute of Medicine—National Academy Press, 1997. Copies available at: http://www.nap.edu/nap/bookstore

Curtis JR, Rubenfeld GD. (eds.). Managing Death in the Intensive Care Unit: The Transition from Cure to Comfort. New York: Oxford University Press, 2001.

Doyle D, Hanks GWC, MacDonald N (eds.). Oxford Textbook of Palliative Medicine, 2^nd ed. New York: Oxford University Press, 1998.

"End-of-Life Care." JAMA. 2000;284(19).

Lo B, Snyder L, Sox HC. Care at the end of life: Guiding practice where there are no easy answers. Annals of Internal Medicine. 1999;130:772-4.

Phillips RS, Hamel MB, Covinsky KE, Lynn J (eds.)."Findings from SUPPORT and HELP: Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatment, Hospitalized Elderly Longitudinal Project." Supplement to Journal of the American Geriatrics Society. 2000;48(5):S1-S233.

SUPPORT. The SUPPORT clinical investigators. A controlled trial to improve care for seriously ill hospitalized patients. JAMA. 1995;274:1591-1598.

Weisfeld V, Miller D, Gibson R, Schroeder S. Improving care at the end of life: What does it take? Health Affairs. 2000;19(6):277-283.

Grief and Bereavement

Bedell SE, Cadenhead K, Graboys TB. The doctor's letter of condolence. New England Journal of Medicine. 2001;344:1162-3.

Casarett D, Kutner JS, Abrahm J. Life after death: A practical approach to grief and bereavement. Annals of Internal Medicine. 2001;134:208-215.

"On Grief and Bereavement." Innovations in End-of-Life Care. 2001;3(3), http://www.edc.org/lastacts The entire issue is devoted to this topic and includes a Read More page with targeted references. Readers need to register (registration is free) in order to access these pages.

Medical Education and Residency

Abele Meekin S, Klein JE, Fleischman AR, Fins JJ. Development of a palliative education assessment tool for medical student education. Academic Medicine. 2000;75:986-992.

Billings JA, Block S. Palliative care in undergraduate medical education: Status report and future directions. JAMA. 1997;278:733-8.

Block S, Billings JA, Peterson L. My patients, my self: Students learn from patients facing death. Harvard Medical Alumni Bulletin. 1997;70:37-42.

Dawson PL. Forged by the Knife: The Experience of Surgical Residency from the Perspective of a Woman of Color. Open Hand Publishing, 1999.

Fins JJ, Nilson EG. An approach to educating residents about palliative care and clinical ethics. Academic Medicine. 2000;75:662-665.

Good M-JD, Good BJ. Disabling practitioners: Hazards of learning to be a doctor in American medical education. Orthopsychiatry. 1989;39:303-9.

Jones C. Sociodrama: A teaching method for expanding the understanding of clinical issues. Journal of Palliative Medicine. 2001;4:386-390.

Markakis KM, Beckman HB, Suchman AL, Frankel RM. The path to professionalism: Cultivating humanistic values and attitudes in residency training. Academic Medicine. 2000;75:141-150.

Romer AL. Healing and Curing: A Psychological Exploration of Patient-Doctor Relationships through the Experiences of Third-Year Medical Students. Unpublished doctoral dissertation, Harvard Graduate School of Education, 1994.

Simpson DE. What "stage" can you use as a platform to teach end of life? Journal of Palliative Medicine. 2001;4:385.

Wear D, Bickel J (eds.). Educating for Professionalism: Creating a Culture of Humanism in Medical Education. Iowa City: University of Iowa Press, 2000.

Patient-Doctor Relationship

Blackhall LJ, Murphy ST, Frank G, Michel V, Azen S. Ethnicity and attitudes toward patient autonomy. JAMA. 1995;274:820-5.

Charon R. Let me take a listen to your heart. In Caregiving: Readings in Knowledge, Practice, Ethics, and Politics. S Gordon, P Benner, N Noddings (eds.). Philadelphia, PA: University of Pennsylvania Press, 1996, 292-305.

Charon R. The narrative road to empathy. In Empathy and the Practice of Medicine. H Spiro, MG McCrea Curnen, E Peschel, D St. James. (eds.). New Haven: Yale University Press, 1993, 147-159.

Delbanco RL. Enriching the doctor-patient relationship by inviting the patient's perspective. Annals of Internal Medicine. 1992;116(5):415-418.

Lawrence-Lightfoot S. Respect. Reading, MA: Perseus Books, 1999.

Lazare A. Shame and humiliation in the medical encounter. Archives of Internal Medicine. 1987;147:1653-8.

MacLeod R. Learning to care: A medical perspective. Palliative Medicine. 2000;14:209-16.

Matthews DA, Suchman AL, Branch WT. Making "connexions": Enhancing the therapeutic potential of patient-clinician relationships. Annals of Internal Medicine. 1993;118:973-7.

Novack DH, Suchman AL, Clark W, Epstein RM, Najberg E, Kaplan C. Calibrating the physician: Personal awareness and effective patient care. JAMA. 1997;278:502-9.

Quill TE, Brody H. Physician recommendations and patient autonomy: Finding a balance between physician power and patient choice. Annals of Internal Medicine. 1996;125:763-769.

Quill TE, Cassel CK. Nonabandonment: A central obligation for physicians. Annals of Internal Medicine. 1995;5:368-374.

Spiro H, McCrea Curnen MG, Peschel E, St. James D. (eds.). Empathy and the Practice of Medicine. New Haven: Yale University Press, 1993.

Suchman AL, Markakis K, Beckman HB, Frankel R. A model of empathic communication in the medical interview. JAMA. 1997;277:678-82.

Sulmasy DP. At wit's end. Journal of General Internal Medicine. 16(5):335-338.

A Few Select Physician and Medical Student Narratives

Byock I. Teaching about living: Teaching about dying: Seymour Byock. In: Dying Well. New York: Riverhead Books, 1997,1-24.

American Board of Internal Medicine. Care for the Dying: Identification and Promotion of Physician Competency. Personal Narratives. Philadelphia,PA: American Board of Internal Medicine, 1996. Copies available at: http://www.abim.org

Greger M. Heart Failure: Diary of a Third Year Medical Student. 1999. Self published on the Internet.

Groopman J. The Measure of Our Days: New Beginnings at Life's End. New York: Viking, 1997.

Selwyn PA. Surviving the Fall: The Personal Journal of an AIDS Doctor. New Haven: Yale University Press, 1998.

Verghese A. My Own Country: A Doctor's Story of a Town and Its People in the Age of AIDS. New York: Simon & Schuster, 1994.

For more references in this genre:

Roster of Physician Writers
http://members.aol.com/_ht_a/dbryantmd/home.html

Suffering, Transcendence, and Spirituality

Astrow AB, Puchalski CM, Sulmasy DP. Religion, spirituality, and health care: Social ethical, and practical considerations. American Journal of Medicine. 2001;110:283-287.

Block S. Psychological considerations, growth, and transcendence at the end of life: The art of the possible. JAMA. 2001;285:2898-2905.

Byock I. Dying Well. New York: Riverhead Books, 1997.

Byock I. Beyond symptom management: Growth and development at the end of life. European Journal of Palliative Care. 1996;3(3):125-130.

Cassell EJ. Diagnosing suffering: A perspective. Annals of Internal Medicine. 1999;131:531-534.

Cassell EJ. The nature of suffering and the goals of medicine. New England Journal of Medicine. 1982;306:639-45.

Dunne T. Spiritual care at the end of life. Hastings Center Report. 2001;31:22-26.

Kleinman A. The Illness Narratives: Suffering, Healing, and the Human Condition. New York: Basic Books, 1988.

Schaerer R. Suffering of the doctor linked with death of patients. Palliative Medicine. 1993;7:27-37.

"Spirituality and End-of-Life Care." Innovations in End-of-Life Care. 1999;1(6), http://www.edc.org/lastacts/ The entire issue is devoted to this topic and includes a Read More page with targeted readings.

Resources for Families

Levine C, (ed.). Always on Call: When Illness Turns Families into Caregivers. New York: United Hospital Fund, 2000.

Lynn J, Harrold J. Handbook for Mortals: Guidance for People Facing Serious Illness. Oxford: Oxford University Press, 1999.

"Supporting Family Caregivers." Innovations in End-of-Life Care. 2001;3(2), http://www.edc.org/lastacts/ The entire issue is devoted to this topic and includes a Read More page with targeted readings.

Wogrin C. Matters of Life and Death: Finding the Words to Say Goodbye. New York: Broadway Books, 2001.

D. Links to Relevant Resources

This is a limited list, many of these will have more extensive links.

Administration on Aging
http://www.aoa.gov/

American Academy on Physician and Patient (AAPP)
http://www.physicianpatient.org/

Center to Advance Palliative Care
http://www.capcmssn.org

Edmonton Palliative Care Program
http://www.palliative.org/

Education for Physicians on End-of-Life Care (EPEC)
http://www.epec.net

End-of-Life Nursing Education Consortium (ELNEC)
http://www.aacn.nche.edu/elnec

End-of-Life Physician Education Resource Center (EPERC)
http://www.eperc.mcw.edu/

Growth House
http://www.growthhouse.org/

Hospice Foundation of America
http://www.hospicefoundation.org/

Last Acts
http://www.lastacts.org

OncoLink
http://www.oncolink.upenn.edu/

On Our Own Terms—Moyers on Dying
http://www.pbs.org/wnet/onourownterms/

Stop Pain! Beth Israel Medical Center Department of Pain and Palliative Care
http://www.stoppain.org

Journals:

American Journal of Hospice and Palliative Care
http://www.hospicejournal.com/pn01000.html

British Medical Journal (BMJ)
http://www.bmj.com

For collected resources on palliative care see http://www.bmj.com/cgi/collection/palliative_medicine

European Journal of Palliative Care (EJPC)
http://www.ejpc.co.uk

Innovations in End-of-Life Care
www.edc.org/lastacts/

Journal of the American Geriatrics Society (JAGS)
http://www.blackwellscience.com/journals/geriatrics/index.html

Journal of Pain and Symptom Management
http://www.elsevier.nl/locate/jpainsymman

Journal of Palliative Care
http://www.ircm.qc.ca/bioethique/english/
publications/journal_of_palliative_care

Journal of Palliative Medicine
http://www.liebertpub.com/jpm/defaultstatic.asp

Palliative Medicine
http://www.arnoldpublishers.com/journals/Journpages/02692163.htm

Progress in Palliative Care
http://www.leeds.ac.uk/lmi/ppc/intro.html

Acknowledgments: We would like to thank Karen S. Heller, Ph.D., and Martin Kohn, Ph.D., for their careful readings and welcome suggestions, which have improved this study guide. ALR and MZS.

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Last Updated: April 30th, 2002.