How are we going to fix this issue?

Death and Dying: Recapturing the Soul of Medicine How are we going to fix this issue? Created by Jeanette Qablawi

“Where the love of mankind exists, love of the art of medicine exists1” • We must learn to “demedicalize” death • And in the process nurture our patients, their families, and ourselves

Concept of “Total Pain” • Founder of Hospice- Dame Cicely Saunders coined the term total pain, from the understanding that dying people have • Physical • Spiritual • Psychological • Social pain They must all be combated by “total care” which covers all of these aspects2

Programs available • Doctors are trained to prevent death, not deal with it • Fellowships are available in hospice, medicine, and palliative care • They teach and train principles which embrace compassion, integrity, and ethical views of taking care of dying patients

Methods used in EOLC education4 • Seminar/small group discussion • Role play-clinical case discussions • Hospice visits • Lecture/literature • Videos/films • Use of dying patient to address class • Simulated patients

Educating Physicians in End-of-Life Care (EPEC) project • 7 step communication process made by the American Medical Association and Robert Wood Johnson foundation3 1. Preparing 2. Assessing 3. Warning 4. Describing 5. Pausing 6. Validating 7. Planning Also essential for doctors to create “safe places” or “safe colleagues” where they can turn to deal with patients who are seriously ill3

The 7 Steps • Preparing: “Choose a quiet, comfortable location where there will be no interruptions, turn off pagers and phones, and decide — asking the patient, if possible — who else should be in on the discussion. Adds Wollner, “Make sure you truly know all of the medical details of the patient’s case beforehand.”3 • Assessing: “Find out what the patient already knows and wants to know. “Some people want every laboratory test, every fact you can give them, while others, often the elderly from other cultures, may say, ‘You’re the doctor, you decide’ or ‘Talk to my son or daughter,’” Wollner says.”3 • Warning: “Old calls this “firing a warning shot.” It is simply saying, “I have some bad news.”3

The 7 steps • Describing: “Present the facts of the case in a succinct but caring way and in terms that patients with no medical background will easily understand. Don’t talk for too long, suggests Thomas McCormick, a medical ethicist at the University of Washington School of Medicine in Seattle. “After you say a word like ‘cancer’ they aren’t going to hear much of what comes after that,” he says.”3 • Pausing: “Sit quietly until the patient responds to the news. How long should you wait? It may feel like an eternity to you but imagine what it feels like for the patient, says Old. If there is no response he suggests asking, “Can you tell me what you are thinking about?”3

The 7 steps • Validating: “In addition to assessing the patient’s emotional response and answering questions, try to empathize with the feelings expressed. When answering questions, give the information in small chunks, Old says”3 • Planning: “Always end the discussion by presenting a follow-up plan. This can be as simple as setting up another discussion later in the day. “You want to ensure continuity of care for the patient, give a clear picture of the next steps, and make sure somebody is around to answer questions,” Wollner says.”3 Becoming familiar with these steps is a great way to start your quest for knowledge on end of life care

What are some programs schools are adding? • Thanatology- is the scientific study of death, it investigates the mechanism and forensic aspects of death, as well as wider social aspects related to death6 • The University of South Carolina’s Medical School has made it mandatory that their students attend 2 seminars of Thanatology5

Hospice of Huntington (HH) • In October 1994, the department chairman approached the executive director of Hospice of Huntington with a proposal to have students actively participate in the processes of hospice care5 • The rotation proved so educationally rewarding that it was made mandatory-8 weeks of long clinical experience consisting of a minimum of 3 hours per week for each full time student in the six clerkship rotations per year5

Educational Programs • Yale has also developed 2 programs for EOLC • Communicating difficult news workshop7 • Ward-based end-of-life care assignment7

Communicating difficult news workshop • 3.5 hour workshop • Begins with reading of Roymond Carvers Poem “What the doctor said” • Students practice breaking bad news to actors trained to reliably and reproductively enact a patient scenario • Receive feedback from other students and faculty • Followed by a debriefing that includes reflection-allows students to communicate feelings during the interview • Also receive additional handouts on subject

Ward-Based End of life Care Assignment Objectives: • Increase awareness of end-of-life issues faced by patients in the acute setting7 • Understand the element of a comprehensive end of life assessment7 • To gain more comfort and ability to communicate effectively with patients at end of life7 • To appreciate the importance of reflection on the experience of caring for patients at the end of life7

Ward-Based End-of-Life Care Assignment • Students will care for dying patients, conduct interviews, be asked open ended questions, reflect, and then write a two page report addressing questions in a written guide lines7 • Students present their case at the end-of-life case conference, which takes place eight times per year on the Psychiatry Clerkship7 • Students are asked to start their presentation with a brief clinical summary during group discussion, share one or two open ended questions they found challenging, educational or surprising7 • Finally each student shares a personal reflection on the experience prompted by a question such as: How did it feel to sit and talk to someone who was seriously ill?7

Outcomes • Both programs place emphasis on building/reinforcing principles of patient centered communication • Students learn to respond empathically to patients feelings and emotions and recognize that this creates a strong doctor patient bond that can lead to improved health outcomes • Student remark: “I learned most of all that one must take care to look out for the good of the suffering/dying patient…this was a very good exercise that I am glad Yale requires; it forced me to think very carefully about why I feel the emotions I did in the EOL situation and I will be a better doctor for it”7

Core part of both programs centers on importance of self-reflection and awareness • Self-reflection and self-awareness affect student ability to effectively communicate difficult news • Self-awareness is critical in developing mindful practice, which can help reduce the risk of professional burnout

Biopsychosocial model • This model developed by Engel posits that biological, psychological, and social factors all are important in an individual patient’s risk for and experience of illness7 • This concept is introduced in the preclinical curriculum but not emphasized in an organized way during the clinical years7

Sample questions students are presented with to handle talking about death with terminally ill patients7 • With your current condition, what is most important to you right now? • What are you hoping for? • What do you hope to avoid? • What are you expecting for the time you have left? • What are you afraid might happen?

The use of literature to teach end of life care • The text most commonly used in literature and medical courses to discuss death and dying is The death of Ivan Ilyich-by Leo Tolstoy8 • Literature is used in many medical schools to teach healers about the experience of illness, suffering, and death, and thereby promote humanism in the practice of medicine8

Pros of Literature8 • Experience new situations • Meet a variety of characters • Explore diverse philosophies • Develop empathy and respect for others • Promote narrative knowledge • Promote narrative competency • The ability to listen to the narrative of patients • Grasp honor of their meaning • Significance of stories through cognitive symbolic and effective means

Combating Sadness and Grief • Excerpts from literature such as “Thomas and William’s” are useful in encouraging trainees to share their grief with their colleagues, and to manage their emotional response to their patients suffering8 • Reading leads you to examine the ethical dilemmas created by medical science and the economics of caring for dying patients

Anxiety • Both anxiety and depression are common among the dying, and their recognition and management can help patients live fully in their final days

Anger • Feelings doctors might get: displaced anger at themselves for not saving patient, or on dead individual for not trying hard enough to survive8 • Medical students need to be exposed to these topics/situations to help them better understand the feelings they will experience and develop tools to cope

Talking about EOLC with patients • Clinicians wait for clues from the patient before raising EOLC issues, while patients commonly wait for clinicians to raise the issue9 • As a result the conversation rarely take place, as physicians we must learn to communicate more effectively9 • Rather than it being a one off conversation, it should be seen as a process done over time based on an established trusting relationship9

Conclusion • We are making great strides in education, but more work still needs to be done • It is up to students to advocate their desires for more End-of-Life Care in medical school curriculum, and in the mean time, become curious and learn on their own • Explore the resources already out there: Literature, videos, hospice volunteering etc.

References • The Goodness of the Physician - From Hippocrates to High-Tech and Beyond. Perf. Sherwin Nuland. The Jerome Medalie End-of-Life Issues Study Group and the Program for Humanities in Medicine's Annual James Kenney Lecture, 2010. Online • Halifax, Joan. "The Precious Necessity of Compassion." Journal of Pain and Symptom Management 41.1 (2011): 147-53. Print. • Redling, Bob. "In Practice: Dealing With Death Delivering Bad News with Compassion."Physicians Practice 17.3 (2007): 1-6. Print. • Field, David, and Bee Wee. "Preparation for Palliative Care: Teaching about Death, Dying, and Bereavement in UK Medical Schools." Medical Education (2002): 561-67. Print. • Cowell, Daniel D., Charlene Farrell, Nichole A. Campbell, and Brittany E. Canady. "Management of Terminal Illness: A Medical School-Hospice Partnership Model to Teach Medial Students About End of Life Care." Academic Pshychiatry (2002): 1-5. Print. • "Thanatology." Wikipedia. Wikimedia Foundation, 28 July 2012. Web. 11 Aug. 2012. <http://en.wikipedia.org/wiki/Thanatology>. • Ellman, Matthew S., and Auguste H. Fortin. "Benefits of Teaching Medical Students How to Communicate with Patients Having Serious Illness." Yale Journal of Biology and Medicine (2012): 261-70. Print. • Donohoe, Martine. "Reflections of Physician-Authors on Death: Literary Selections Appropriate for Teaching Rounds." Journal of Palliative Medicine 5.6 (2002): 843-48. Print. • Barclay, Stephen, Natalie Momen, Steve Case-Upton, Isla Kuhn, and Elizabeth Smith. "End-of-Life Care Conversations with Heart Failure Patients:a Systematic Literature Review and Narrative Synthesis." British Journal of General Practice (2011): E49-62. Print.

How are we going to fix this issue?