Cancer As a Chronic Disease: Curriculum for Survivorship

CANCER AS A CHRONIC DISEASE: CURRICULUM FOR SURVIVORSHIP INSTRUCTIONAL MATERIAL INFORMATION FORM

Title: COMMUNICATING FOR COMFORT End of Life Planning, Palliative Care & Pain Management

Author(s): Paula Cifuentes Henderson,MD Art Gomez,MD Elizabeth O'Gara

Format: Doctoring Case. Standardized Patient Interview

Description: I- Background “To work with the dying demands a belief in life . . .” With death imminent, patients worry that no one is listening and fear dying with unnecessary pain and suffering. Timely, sensitive discussions with seriously ill patients regarding medical, psychosocial, and spiritual needs at the end of life are both an obligation of and privilege for every physician . These discussions clarify treatment options and may shift the emphasis from cure to palliation. Palliative care focuses primarily on relieving pain and physical symptoms, enhancing psychosocial supports, and allowing patients and families to achieve meaningful closure. These opportunities should be offered to all seriously ill patients, regardless of their views about continuing disease-directed interventions. As the extent of suffering progresses out of proportion to prognosis, some patients choose palliation as their primary objective. Unfortunately, palliative care is frequently offered late in the dying process, if at all, and as an alternative to usual medical care as opposed to something that can enhance or supplement it.

II- PRE-INTERVIEW: Harry Fitzroy, age 62, has been diagnosed with a malignant tumor of the pancreas. He received the diagnosis of pancreatic cancer one week ago following extensive tests and was sent for consultations with a surgeon and an oncologist. He has returned to his primary care physician today to discuss treatment options and prognosis. His medical records and the recommendations of the consultants are provided for review.

A review of Mr. Fitzroy’s records indicates that a mass in the head of his pancreas was confirmed as a pancreatic carcinoma via a fine needle biopsy. The consulting surgeon speculates that the mass is confined to the head of the pancreas and therefore amenable to excision (ie, resectable), which would result in cure. The likelihood of this is slim, but surgery is recommended by both the surgeon and oncologist regardless, in order to relieve the pain caused by compression of the bile ducts by the tumor, with adjuvant chemotherapy to follow.

III- Discussion: A- Discuss the significance of Mr. Fitzroy’s diagnosis. * Given the grave prognosis inherent in pancreatic cancer, what can be done for Mr. Fitzroy? * What can we offer? * Have the students delineate what they feel should be included in end-of-life discussions. B. DISCUSS “ADVANCED DIRECTIVES” *Defining Terms • advance directive: • living will: • durable power of attorney (DPA) for health care (or health care proxy): A method of giving another person legal power to make medical decisions when the patient no longer can. • do not resuscitate (DNR) order (do not attempt resuscitation [DNAR]): C. DISCUSS PALLIATIVE CARE * What is the students’ understanding of palliative care? * Explore biases for and against palliative care.

II. PATIENT INTERVIEW

A. OVERVIEW Despite the possible time constraints inherent in the disease treatment, it is very important for the students to learn to work on the patient’s timetable, not the disease’s. With the understanding that this will be a progressive “journey” with Mr. Fitzroy, and that not everything can or should be decided today, the encounter should nonetheless still touch on: • Clarifying the prognosis • Reviewing treatment options • Identifying end-of-life goals (realizing that previously discussed “goals” may change over time) • Personal goals & values • advance directives • living will • durable power of attorney • DNR order • Developing a treatment plan, including: • palliative care for physical (and by association psychological) needs: pain, dyspnea, nausea, delirium • palliative care for psychological, social, spiritual needs adapted from Balaban RB. “A physician’s guide to talking about end-of-life care.” J Gen Internal Med, March 2000; 15; 195-200.

B. ADDRESSING SPIRITUAL ISSUES

The HOPE mnemonic

• H: sources of hope, meaning, comfort, strength, peace, love and connection • O: organized religion • P: personal spirituality • E: effects on medical care and end-of-life issues (religious/spiritual feelings about medical treatment and life sustaining efforts)

Goals for Physicians When Discussing Spiritual and Religious Issues With Patients and Families Near the End of Life

• Clarify the patient’s concerns, beliefs, and needs and follow hints about spiritual or religious issues. • Make a connection with the patient by listening carefully, acknowledging the patient's concerns, exploring emotions, making empathic statements, and using wish statements. • Identify common goals for care and reach agreement on clinical decisions. • Mobilize sources of support for the patient.

Pitfalls in Discussions About Spiritual and Religious Issues Near the End of Life

• Trying to solve the patient’s problems or resolve unanswerable questions. • Going beyond the physician’s expertise and role, or imposing the physician’s religious beliefs on the patient. • Providing premature reassurance. Lo B, et al. “Discussing Religious and Spiritual issues at the End of Life: A practical guide for physicians.” JAMA, Vol. 287 No. 6, February 13, 2002

III. POST INTERVIEW

A. DISCUSS THE INTERVIEW 1. Did the interviewer(s) successfully balance the gathering and providing of information with ascertaining and addressing the patient’s agenda? 2. How did the interviewer feel? 3. How did the interviewer (or might physicians) respond to these feelings? • Avoidance of discussions with patients • Emotional distance • Hide behind numbers/data 4. What do patients want/need from us? • What does a patient mean when s/he wants “hope?” • Can we offer hope if there is no chance of cure?

B. ORAL PRESENTATION:

Cancer Type: Pancreatic Cancer

Target Audience: Medical Students. Second Year

Objectives: By the end of this module, students will

1. Demonstrate what to include in end-of-life discussions 2. Realize the place of palliative care in end-of-life care 3. Understand the place of spiritual and religious issues in the medical interview 4. Recognize the potential meanings in a patient’s request for physician-assisted death 5. Understand the management of pain in the terminally ill patient

Last Updated: 5/06