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An Official American Thoracic Society Clinical Policy Statement: Palliative Care for Patients with Respiratory Diseases and Critical Illnesses

American Journal of Respiratory and Critical Care Medicine, Apr 15, 2008 by Lanken, Paul N, Terry, Peter B, DeLisser, Horace M, Fahy, Bonnie F, Hansen-Flaschen, John, Heffner, John E, Levy, Mitchell, Mularski, Richard A, Osborne, Molly L, Prendergast, Thomas J, Rocker, Graeme, Sibbald, William J, Wilfond, Benjamin, Yankaskas, James R

EXECUTIVE SUMMARY

Palliative care aims to prevent and relieve suffering by controlling symptoms and to provide other support to patients and families in order to maintain and improve their quality of living. Although originally conceived and practiced as end-of-life care, palliative care may be applied to all stages of illness, whether terminal or not.

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Because its members commonly care for children and adults and their families in need of palliative care due to chronic respiratory diseases or critical illnesses, the American Thoracic Society (ATS) approved formation of an ad hoc End-of-Life Care Task Force whose purpose was to develop this statement that focuses on how to better integrate palliative care into standard clinical management (curative and/or restorative care). The statement's goals are both educational and prescriptive. The task force took a principle- and values-based approach in meeting this goal. It first identified the core values and principles of the ATS, as a professional society, related to palliative care (Table 1). It then applied those principles and values to clinical practice for both children and adults with chronic and advanced pulmonary disorders as well as those with critical illnesses. The task force derived its positions and recommendations based on those values and principles, on expert opinions and experience of members and consultants of the task force, and on a focused literature review.

The statement strongly endorses the concept that palliative care should be available to patients at all stages of illness and should be individualized based on the needs and preferences of the patient and the patient's family (Figures 1 and 2). It also recommends that clinicians who care for patients with chronic or advanced respiratory diseases and/or critical illnesses should be trained in, and capable of, providing a set of recommended basic competencies in palliative care (Table 2). Finally, it recommends that these clinicians should consult with palliative care specialists as appropriate for managing palliative care situations beyond the clinician's level of competence.

The statement also provides clinicians a set of practical recommendations for providing palliative care to adult and pediatric patients with advanced respiratory diseases and critical illnesses. These relate to common symptoms of those terminally ill with advanced respiratory disorders, including management of dyspnea (Table 3) and pain (Table 4) and other physical complications. In addition, the statement discusses the psychological challenges related to suffering and dying as an adult or as a child and approaches to meeting those challenges. The statement endorses hospice care as an appropriate multidisciplinary system to provide palliative care to the patients and their families. It also presents current criteria for enrollment into hospice in the United States (Table 5).

The statement reviews current recommendations related to discussions and decisions when the goals of care in the intensive care unit (ICU) change from primarily curative/restorative care to primarily or entirely palliative care (Figure 2). It also discusses a number of ''do's'' and ''don'ts'' relevant to withholding and withdrawing life support for adults and children. One section discusses the concept of the principle of double effect as applied to palliative care of ICU patients or those with advanced respiratory diseases. This includes a description of the clinical practice of ''palliative sedation'' (formerly referred to as ''terminal sedation'') and a discussion of its ethical and medical complexities.

Bereavement care both before and after the patient's death is recognized as an essential component of palliative care (Figures 1 and 2). In addition, the statement recommends measures to ''care for the caregivers''-both family and friend caregivers and professional caregivers.

In conclusion, the statement describes current barriers to patients and families receiving comprehensive and individualized palliative care. It calls on the ATS to work with other professional organizations of health care professionals to support palliative care in terms of enhanced public and professional education and to encourage the funding of further research in palliative care to provide best practices and an evidence-based approach to inform such practices.

THIS OFFICIAL STATEMENT OF THE AMERICAN THORACIC SOCIETY (ATS) WAS ADOPTED BY THE ATS BOARD OF DIRECTORS, MARCH 2007

Executive Summary

Introduction

Methods

Goals, Timing, and Settings for Palliative Care

Decision-making Process

Advance Directives

Care Planning and Delivery

Hospice Care

Alternative End-of-Life Decisions

Symptom Management

Dyspnea Management

Pain Management

Management of Psychological and Spiritual Distress and Suffering

Withdrawal of Mechanical Ventilation

Process of Decision Making

Process of Withdrawing Mechanical Ventilation

Bereavement Care

Barriers to Palliative Care

Program Development, Education, Training, and Research in Palliative Care

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An Official American Thoracic Society Clinical Policy Statement: Palliative Care for Patients with Respiratory Diseases and Critical Illnesses

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