Papers by the End-of-Life Care Consensus Panel

This series of published papers, developed by the End-of-Life Care Consensus Panel, addresses a broad range of issues encountered by physicians and patients as they grapple with end of life decisions.

Care at the End of Life: Guiding Practice Where There Are No Easy Answers
Bernard Lo, MD, FACP, Lois Snyder, JD, and Harold C. Sox, MD, FACP
This paper launched a series of articles about end-of-life care developed by the ACP-ASIM End-of-Life Care Consensus Panel. It is a call to arms to improve care of the dying. The articles in the series will provide practical advice and guidance to clinicians.

Discussing Palliative Care with Patients
Bernard Lo, MD, FACP, Timothy Quill, MD, FACP, and James Tulsky, MD
Even experienced physicians often struggle when initiating complex, emotionally laden discussions about palliative care with seriously ill patients and their families. Two case scenarios illustrate several communication techniques physicians can use to initiate these discussions.

A Consensus-Based Approach To Providing Palliative Care to Patients Who Lack Decision-Making Capacity
Jason H.T. Karlawish, MD, Timothy Quill, MD, FACP, and Diane E. Meier, MD, FACP
Making palliative care decisions when a patient lacks decision-making capacity presents several challenges. The case and commentary provided in this paper show how physicians can guide a process that facilitates good palliative and good care decision-making for patients who lack capacity.

Management of Pain and Spinal Cord Compression in Patients with Advanced Cancer
Janet L. Abrahm, MD, FACP
Pain and spinal cord compression are two of the most distressing problems faced by patients with advanced cancer. This paper uses a case study to illustrate an evidence-based approach to the most common clinical challenges such patients present.

Dying Patients in the ICU: Forgoing Treatment, Maintaining Care
Kathy Faber-Langendoen, MD and Paul Lanken, MD, FACP
This paper considers the care of ICU patients for whom the decision has been made to limit life-sustaining treatment. It challenges the misconception that such decisions are decisions to withdraw care, encouraging physicians to approach the care of patients dying in the ICU with the same attention to care and compassion that guide the care of ICU patients expected to survive.

Beyond Good Symptom Management: Opportunities Within Palliative and End-of-Life Care
(Currently available in Physician's Guide to End-of-Life Care book)
Ira Byock, MD, Arthur Caplan, PhD, and Lois Snyder, JD
Palliative care is focused on the goals of alleviating suffering and improving quality of life. Clinical, systemic, financial, and cultural barriers impose challenges to achieving these goals. Responding to these barriers requires skillful communication, care, and symptom management.

Responding to Intractable Suffering: The Role of Terminal Sedation and Voluntary Refusal of Food and Fluids
Ira Byock, MD and Timothy Quill, MD, FACP
Good palliative care addressing the multiple physical, psychosocial, and spiritual dimensions of suffering should be the standard of care for the dying. There remain, however, a few patients whose suffering is intractable despite excellent care. This paper discusses terminal sedation and voluntary refusal of hydration and nutrition as possible last resort responses to severe end-of-life suffering that has not otherwise been relieved.

Assessing and Managing Depression in the Terminally Ill Patient
Susan Block, MD
Physicians who care for terminally ill patients commonly confront a range of complex medical and psychosocial questions and challenges. For many physicians, treating patients who are experiencing psychosocial distress is particularly difficult. In this paper, three cases are used to illustrate assessment and management of 1) normal distress and grieving; 2) clinical depression; and 3) the wish to hasten death in the presence of psychological distress.

Financing of Care for Fatal Chronic Disease: Opportunities for Medicare Reform
Joanne Lynn, MD, FACP, Anne Wilkinson, PhD, Lynn Etheridge, and Barbara Gage
This paper examines the role of Medicare financing in the care of persons nearing the end of life and explores how changes might encourage improved care. Reforms should be guided by better data, including demonstration and evaluation projects, and by vigorous and thoughtful discussion.

Reforming Care for Persons Near the End of Life: The Promise of Quality Improvement
Joanne Lynn, MD, FACP, Don Berwick, MD, Andrea Kabcenell, RN, Kevin Nolan, PhD, David Weissman, MD, and Casey Milne
This paper illustrates the method and merits of quality improvement with regard to care at the end of life. Practical advice is offered on quality improvement initiatives for immediate implementation.

Strategies for Culturally Effective End-of-Life Care
LaVera Crawley, MD, Patricia Marshall, PhD, and Barbara Koenig, RN, PhD
Respecting cultural difference at the end of life requires physicians to expand the possibilities of what may constitute a "good death." Differences in beliefs, values, and health-care practices may provide a challenge to physicians, depending on their comfort and experience with cultural differences. Increasing cultural competence can increase physician effectiveness and patient/family satisfaction.

Legal Barriers to End-of-Life Care: Myths, Realities, and Grains of Truth
Alan Meisel, JD, Lois Snyder, JD, and Timothy Quill, MD, FACP
Legal myths about end-of-life care can undermine good care and ethical medical practice. This paper outlines some of these current myths, followed by a discussion of the reality concerning each myth, that is, a fair statement of the legal consensus. Given the variety of state laws and hospital protocols in end-of-life care, each discussion ends with caveats in the form of "grains of truth" about each myth.

Life after Death: A Practical Approach to Grief and Bereavement
David Casarett, MD, Janet Abrahm, MD, FACP, and Jean Kutner, MD
This consensus paper uses a case-based format to describe essential aspects of the grieving process, and the corresponding skills and techniques clinicians need to help those experiencing grief after the death of a loved one. Recommendations are also provided regarding interventions and indications for referral.

Diagnosis and Management of Delirium Near the End of Life
David Casarett, MD and Sharon Inouye, MD
Patients near the end of life may face a variety of symptoms that are distressing and debilitating, perhaps none as detrimental to quality of life, and as difficult to diagnose and manage, as delirium. Therefore, appropriate treatment of delirium is a necessary first step to maximizing patient comfort, optimizing quality of life, and enhancing the leave-taking process for the patient and family. This consensus paper presents strategies for the diagnosis and management of delirium near the end of life, and concludes with a discussion of strategies for prevention and treatment.