Palliative and End-of-Life Care Overview

This is a comprehensive End-of-Life (EOL) curriculum that offers cases and tutorials that focus on practical management of patients at the end of life. During the end of life, the focus of care shifts from disease-directed therapy, or therapy with curative intent, to aggressive relief of physical, emotional, social and spiritual suffering. The goals of palliative care at the EOL are to improve the patient’s quality of life and functional status, even if the quantity of life is not affected. Addressing the medical and psychosocial needs of dying patients is critical in helping them to die with dignity, minimal discomfort and maximum social support. In an era in which life-prolonging technologies are available and patient-controlled analgesia is underutilized, laypersons and EOL experts agree that respecting a dying person’s preferences for care, advance directives, desires for support, values, and need for information are integral parts of EOL care.

Innovative Learning Tools

This eDoctoring program is composed of three interconnected tools that are designed to improve physical delivery of EOL care to cancer patients by addressing learning knowledge, skills and attitudes.

Cases

Learners follow a clinical case presented in segments comprised of video and interactive components that provide instant feedback on learner responses. Each case is narrated by a professor and two clinical doctors who discuss various aspects of the case.

 Case List

Breast Cancer (June Philips): A 36-year old homeless IV-drug user was previously diagnosed with breast cancer while incarcerated and it has now metastasized. Issues around health insurance, stereotypes, biases and pain control are brought up.

Chemotherapy Complications (Jim Branson): A 35-year old male's aggressive leukemia went into remission after several cycles of chemotherapy, but he subsequently develops a dilated cardiomyopathy from doxorubin. Physician-patient boundaries, family issues and advance directives are discussed.

Congestive Heart Failure (Betty Merchant): A 70 year-old woman remains in denial about the gravity of her end stage cardiac disease. Advance directives, treatment adherence and depression are discussed.

Dementia (Gladys Harper): A 65 year-old female has recently been diagnosed with Alzheimer's disease. Issues such as physician-assisted suicide, and code status are encountered.

Leukemia - Adult (Isabella Jameson): A 68 year old woman develops leukemia years after establishing a living will. As her disease progresses, her competence to engage in decision-making regarding her care comes into question. Effective communication and the usefulness of living wills are discussed.

Leukemia - Pediatric (Danny Evans): A 9-year old male patient presents with a relapse of Acute Lymphocytic Leukemia, diagnosed 5 years earlier. Child Life Specialists, clinical trials and clinician burnout are discussed.

Lung Cancer (Lydia Wu): A 43-year old non-smoking accountant, is told that her cough and respiratory symptoms are a result of adenocarcinoma of the lung. The team approach to care, culture and alternative medicine topics are discussed.

Lymphoma (Marge Warner): A 73-year old female patient has a relapse of lymphoma. She discusses treatment options with her physician and daughter and the barriers to care due to her geographic location. Depression and ethical concerns are encountered.

Motor Vehicle Accident (Carlos Ramirez): A 17-year old male is rushed to the Emergency Department following a serious motor vehicle accident. Issues around telephone communication, dealing with misdirected anger by families, and futility are discussed.

Myocardial Infarction (Rita Salerno): A 66 year-old female has a massive myocardial infarction and her husband waits in a nearby room while the medical team attempts to resuscitate her. Issues around communication and family presence during resuscitation are discussed.

Near Drowning - Adult (Bobby Reynolds): An unconscious and unresponsive 18-year old male arrives in the ER after nearly drowning. Issues around breaking bad news, caregiver stress, family meetings and futility are brought up.

Near Drowning - Pediatric (Bobby Reynolds): An unconscious and unresponsive 4-year old boy arrives in the ER after nearly drowning. Issues around breaking bad news, caregiver stress, family meetings and futility are brought up.

NICU (Catarina Pacheco): A newborn infant of a first‐generation immigrant couple is born hydra‐anencephalic. Culture, communication and breaking bad news are dealt with.

Osteosarcoma - Early (Robin Appleby): After a biopsy is positive for osteosarcoma, an oncologist informs the parents of a 12-year old girl that her leg fracture is a result of cancer. Issues around consent and assent, treatment and family problems are encountered.

Osteosarcoma - Relapse (Robin Appleby): A 13-year old girl presents with neutropenic fever and rash associated with a relapse in osteosarcoma. A change in focus the focus of care and hospice are discussed.

Prostate Cancer (Darryl Johnstone): A 62-year old male with a history of prostate cancer, dies in the hospital after being admitted for urosepsis. An M&M conference is convened to explore issues around dilaudid use, second effect and appropriate pain control.

Tutorials

Learners are exposed to content specific information that focuses on specific topics in end-of-life care. Learners can interact with tutorials independently of the cases, although they often expand on topics that are presented in the cases. The tutorials are housed in the library with other resources such as journal articles, links, videos, downloadable practice guides and other tools.

 Tutorial List

Complementary and Alternative Medicine: Explores non-allopathic approaches to promoting human health, and accommodating a role for complementary and alternative medicine (CAM) in end-of-life care.

Culture: This tutorial introduces learners to various concepts related to culture and medical care.

Grief and Bereavement: This tutorial addresses common emotions that surface toward the end of life, ‘normal’ versus ‘pathological’ responses to grief, tools clinicians can use to deal with grief in their practices, and differences between grief and depression.

Hospice: This tutorial provides background on hospice and explores common myths about hospice, the economic, emotional and care-management advantages of hospice, and responsibilities after death including autopsies, death certificates and funerals.

Last Hours of Living: This practical tutorial focuses on needed care in the very last hours of life such as managing pain, secretions, dyspnea, difficult family interactions and responsibilities after death.

Medical Ethics: This tutorial uses common clinical cases to review concepts in medical ethics and discusses basic legal principles in medical practice.

Non-pain Symptoms: This tutorial addresses symptoms at the end of life including respiration, GI, cardiovascular, mental and renal.

Pain Management: This tutorial explores core concepts in caring for people in pain, including physiology, medications, adjuvant therapies and myths.

Provider Wellness and Debriefing: Addresses the often ignored topic of how we feel when our patients die and how to understand and act on those feelings.

Spirituality: Learners are exposed to rituals and beliefs around death and dying and how spirituality can be understood in different cultures.

ePortfolio

Allows users and staff to track progress, apply their learning to clinical practice and interact with other learners in the eDoctoring course.

 Portfolio Tools

Module Progress
Displays progress on assigned and optional modules; allows for printing of certificate of completion.

Library
Contains resources related to EOL care including tutorials, journal articles, web resources, tools, case videos.

Action Planning Tool
Learners are given the opportunity to apply lessons they've learned in the cases and tutorials to their own clinical practice. Faculty can access and review the plans created by the learners in their course.

Learning Community Feature
The Learning Community is a forum where users can share their comments and reflections with other learners or faculty enrolled in eDoctoring.

Developers

 Further Information

Course Director (PI)

Michael Wilkes, M.D., Ph.D.

Content Authors

Alpesh Amin, M.D., Katherine Brown-Saltzman, RN, MA, Susan Charette, M.D., Eva Chittenden, M.D., Ian Coulter, Ph.D., Frank C. Day, M.D., M.P.H., Douglas Diekema M.D., M.P.H., Frank D. Ferris, M.D., Geri-Ann Galanti, Ph.D., Marge Ginsburg, R.N., Scott Fishman, M.D., Jerome R. Hoffman, M.D., Solomon Liao, M.D., Bernard Lo, M.D., Ph.D., B.J. Miller, M.D., Douglas Opel, M.D., Steven Z. Pantilat, M.D., Michael W. Rabow, M.D., Ben A. Rich, Ph.D., Mark Robinson, M.S.W., Maria C. Savoia, M.D., Stuart Slavin, M.D., Tahlia Spector, M.D., Malathi Srinivasan, M.D., Charles von Gunten, M.D., Ph.D., Scott Votey, M.D., Daniel West, M.D.

Statisticians

Daniel Tancredi, Ph.D., Erin Griffin, Ph.D., and Claudia Der-Martirosian, Ph.D.

Project Staff

Timothy C. Beer, Christine Harlan,J.D., Stacy Hayashi, Jerilyn Higa, M.S., Polly Latow, M.S., and Devin Rifkin

Web Development Team

University of Newcastle upon Tyne: Paul Drummond, Andrew Fanning, Dan Plummer

Video Production

Geoffrey Haley and Michael Wilkes, M.D., Ph.D.


Funding provided by
Dept of Health and Human Services National Institutes of Health National Cancer Institute