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  Health Topics: Palliative Care
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Palliative Care Publications for Providers

Policy Statements

Periodicals/Articles

Publications

  • A Call for Change: Recommendations to Improve the Care of Children Living with Life-Threatening Conditions. A white paper produced by the Children’s International Project on Palliative/Hospice Services (ChIPPS) Administrative/Policy Workgroup of the National Hospice and Palliative Care Organization. Alexandria, VA October 2001 Paper
  • Palliative Care for Infants, Children, and Adolescents A Practical Handbook
    By Brian S. Carter, M.D., FAAP, and Marcia Levetown, M.D.
    Palliative care for terminally ill adults is receiving growing recognition as a major component in medical care. Yet far less is known or understood about the needs of infants and children with life-limiting conditions. Developed by leading researchers and practitioners from relevant disciplines, this practical guide provides professionals involved in pediatric end-of-life care with comprehensive information for hands-on care in a single volume. Order this Handbook from University Press.
  • When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families By Marilyn J. Field and Richard E. Behrman, Editors, Committee on Palliative and End-of-Life Care for Children and Their Families
    When Children Die examines what we know about the needs of these children and their families, the extent to which such needs are and are not being met, and what can be done to provide more competent, compassionate, and consistent care. The book offers recommendations for involving child patients in treatment decisions, communicating with parents, strengthening the organization and delivery of services, developing support programs for bereaved families, improving public and private insurance, training health professionals, and more.
  • Interdisciplinary Clinical Manual for Pediatric Hospice and Palliative Care
    By Susan M. Huff, RN, MSN, and Stacy Orloff, LCSW, EdD
    Focuses on the role of the clinicians in the provision of care to children with life-threatening conditions and their families. Order this manual from Children's Hospice International.
  • End-of-Life Care for Children
    Cancer Center, Texas Children's Hospital
    The goal of this booklet to provide helpful information to physicians, nurses, social workers, clergy or chaplains, or other health care professional, and the family involved in the care of a child facing the final stages of his or her illness. (Designed to fit in a pocket). Order this booklet from Children's Hospice International.
  • End-of-Life Pain Management in Children and Adolescents
    A book on Pain Management at the End of Life: Bridging the Gap between Knowledge and Practice will be published in conjunction with the 2006 Hospice Foundation of America's teleconference, Living With Grief(r) Series. One of the chapters, End-of-Life Pain Management in Children and Adolescents by: Rebecca Selove, Dianne Cochran, and Ira Todd Cohen examines the issues that professionals face in this difficult situation. To see the PDF, go to: www.hospicefoundation.org/hfaPublications/books/lwg2006/selove.pdf
  • "Learning from the Dying" - New England Journal of Medicine Article Addresses Training Physicians in End-of-Life Care
    The article, entitled “Learning from the Dying,” outlines the experience described by a medical student with his patient, who has breast cancer, during a pre-clinical course for medical students called "Living with a Life-Threatening Illness," which authors Susan D. Block, MD, and J. Andrew Billings, MD, have directed for the past 10 years. The course annually engages 20 to 30 percent of the first-year students. Most of them develop strong and deeply affecting relationships with the volunteer patients, all with life-threatening illnesses, who serve as teachers in the course, teaching the medical students important lessons about the power of listening and bearing with suffering. To read the full article, go to: content.nejm.org/cgi/content/full/353/13/1313
  • Innovations in End-of-Life Care - An international journal of leaders in end-of-life care.
    This international, online journal features peer-reviewed promising practices in end-of-life care, useful tools, selected bibliographies, and other resources.
    Previously published bimonthly, as of October 2003, the journal will no longer post new issues. All 28 past thematic issues, from January 1999 through September 2003, are now archived at this site and are available to read, download, and print for free. For a chronological list of issues, click here. To look up issues by topic, and useful tools click here. Use the Search button to search by keyword or author's last name.
  • Fast Facts: Broaching the Topic of a Palliative Care Consultation
    Palliative care consultative services are becoming commonplace in academic and
    community hospitals. Patients and families often, although not always, have negative perceptions of palliative care and hospice, viewing such a discussion as signaling that the physician is "giving up on the patient" and that the reality of impending death must be faced. For the attending physician, the decision to convey to a patient and family that a consultation is needed can provoke anxiety; physicians may fear such a discussion will provoke anxiety, anger or a sense of hopelessness.

    This Fast Fact will provide tips for effectively beginning a discussion leading to a visit by a palliative care consultation team. Fast Facts is available at: www.eperc.mcw.edu/FastFactPDF/Concept%20042.pdf

  • Fast Fact: Hospice Referral - Moving from Hospital to Home
    Author: Tara Friedman
    The transition from hospital to home for the patient about to be enrolled in home hospice care is complex. Miscommunication between hospital staff and hospice care providers regarding goals of care and medications occurs commonly and only heightens existing stress and fear among patients and their caregivers. This Fast Fact reviews key steps in the transition from the acute care hospital setting to home hospice care. Fast Facts is available at: www.eperc.mcw.edu/fastFact/ff_139.htm
  • Fast Fact: Teaching the Family What to Expect When the Patient is Dying Author: Charles F. von Gunten, MD, PhD
    Family members look to the physician and nurse to help them know what to expect when a loved one is dying. No matter what the underlying causes, there is a common final pathway that most patients travel. Indicate your desire to be helpful. Say: Many families like to know what may happen so they will be prepared, is that true for you? If they say yes, describe the features on this list and answer their questions. Fast Facts is available at: www.eperc.mcw.edu/fastFact/ff_149.htm
  • Pioneer Programs in Palliative Care: Nine Case Studies
    In this report clinicians at nine hospitals describe how they and their colleagues established formal programs of palliative care. Clinicians and managers at each of these institutions negotiated innovative clinical and institutional arrangements and made effective use of the reimbursement policies of public and private payers. Each of these programs of palliative care is a product of the organizational culture of the institution in which it operates This report was developed by The Robert Wood Johnson Foundation.

Curriculums/Workshops

  • Pediatric Palliative Care: On line Courses with Mount Ida College
    Enter into the virtual world of education, consider an online learning experience in pediatric palliative care. NHPCO is presenting a series of on line courses with Mount Ida College, including pain management, program development, bereavement, and ethics.

    Courses listed below:

    September 19th - October 7th - Children's Grief
     October 24th - November 18th - Ethical decision-making for Pediatric End of Life Care

All registration and information should be directed to Mount Ida College, their Web site is: www.mountida.edu/ncde

  • The Initiative for Pediatric Palliative Care (IPPC)
    This curriculum is both an education and a quality improvement effort, aimed at enhancing family-centered care for children living with life-threatening conditions. IPPC’s comprehensive, interdisciplinary curriculum addresses knowledge, attitudes and skills that health care professionals need in order to better serve children and families.

    The six IPPC curriculum modules are listed below.

    Engaging with Children and Families
    Relieving Pain and Other Symptoms
    Analyzing Ethical Challenges in Pediatric End-of-life Decision Making
    Responding to Suffering and Bereavement
    Improving Communication and Strengthening Relationships
    Establishing Continuity of Care Available Fall 2004

The curriculum developed by IPPC is FREE and is a powerful tool to assist pediatric health care professionals in their mission of providing the highest quality of care to children and their families

  • Medical College of Wisconsin Palliative Care Center
    The Palliative Care Center is well-established as a local and national resource for improving end-of-life care. The program, headed by David E. Weissman, MD, has been recognized for pioneering work in end-of-life medical education projects sponsored by the National Cancer Institute, the Robert Wood Johnson Foundation, and numerous other local and national foundations. Included on the Web site are:

    Education Resources
     Training Materials
     Links of Interest

  • Palliative Response Manual
    The manual’s topics, designed for presentations of 12-15 minutes, cover management of physical symptoms and emotional, spiritual and social issues common in end-of-life care. The manual offers guidance for specific palliative roles such as sharing bad news, conducting a family conference and making a death pronouncement. Chapters on specific diseases review common symptoms, end-of-life manifestations and prognostic signs that might prompt referral to palliative care and hospice.

    The manual is appropriate as a basic classroom text for students and as a tutorial guide for residents and fellows in Palliative Medicine rotations. Its form facilitates selecting relevant sections for integration into classroom teaching or for review by rounding groups or consulting residents. -From the Virginia Nationwide Palliative Care Network

    Manual Topics
     Introduction to Palliative Care
    Physical Symptoms
    Specific Illnesses
    Social Suffering
    Emotional Suffering
    Religious/Spiritual Issues
    Sharing Bad News
    Subcutaneous Therapies
    Elements and Settings of Care

  • Palliative Care: Presentations for Medical Educators
    This CD Rom contains 15 of the most requested educational topics in adult palliative and hospice care. In this comprehensive program, each presentation contains up to date information on key topics of interest for physicians and other health care professionals who care for seriously ill and dying patients.

    Topics include culture and end of life care, hospice, pain assessment, treatment and management, dyspnea/delirium, nausea, constipation, depression, giving bad news, conducting a family conference and more. Each topic contains a Power Point presentation (typically 30-60 minute presentation time), learning objectives, reflective exercises, key references, associated Fast Facts for supplemental learning, evaluation forms and a multiple choice question exam.

    The material is suitable for departmental grand rounds, ethics conferences, and palliative care lecture series, training programs for medical students, residents, and hospice team members and nursing education programs. The materials have been coded to the ACGME competencies.

    TO ORDER:
    Send your name, address, phone number and shipping instructions with a check, money order, or PO# made out to the Medical College of Wisconsin for $175 US Dollars to:

Judi Rehm
Medical College of Wisconsin
MEB 3235
8701 Watertown Plank Road
Milwaukee, WI 53226
Phone: 414-456-4353
Fax: 414-456-6506
Email: jrehm@mail.mcw.edu
www.eperc.mcw.edu/Educational%20Materials/PresentationsCD.htm

  • End-of-Life Decision-Making in Pediatric Palliative Care
    This module aims to address this gap by providing practical guidance for achieving collaborative decision-making during care for pediatric patients with life-threatening or life-limiting illnesses. Although written for physicians, the content is appropriate for nurses, those in advanced practice and those in training, as well as for clinicians from the allied health professions including those from social work, psychology, child life, and the fields of theology and bio-ethics. Click here to access module.

    This module was developed as part of a Joint Project of Continuing Education and the Joint Centre for Bioethics, University of Toronto and The Temmy Latner Centre For Palliative Care, Mount Sinai Hospital.

  • Fast Facts: Broaching the Topic of a Palliative Care Consultation
    Palliative care consultative services are becoming commonplace in academic and
    community hospitals. Patients and families often, although not always, have negative perceptions of palliative care and hospice, viewing such a discussion as signaling that the physician is "giving up on the patient" and that the reality of impending death must be faced. For the attending physician, the decision to convey to a patient and family that a consultation is needed can provoke anxiety; physicians may fear such a discussion will provoke anxiety, anger or a sense of hopelessness.

    This Fast Fact will provide tips for effectively beginning a discussion leading to a visit by a palliative care consultation team. Fast Facts is available at: www.eperc.mcw.edu/FastFactPDF/Concept%20042.pdf

Guidelines/Models

  • Clinical Practice Guidelines for Quality Palliative Care
    Palliative care programs are growing in response to patient need. They provide assessment and treatment of pain and other symptoms; help with patient-centered communication and decision-making; and coordination of care across settings and through serious illness. These Guidelines, developed through consensus of five major United States palliative care organizations, describe core precepts and structures of clinical palliative care programs.

    You may download either the entire document as a single PDF file or download as a series of smaller files. The complete alphabetical list of references is found in the bibliography. Click here to download the guidelines. Developed by The National Consensus Project for Quality Palliative Care (NCP)

  • The Compendium of Pediatric Palliative Care is the most comprehensive reference on pediatric palliative care available. The compendium is divided into four sections covering the major elements of the field:

    • Models of Pediatric Palliative Care.
    Communication, ethics, and decision making.
    Management of pain and other symptoms in children.
    Psychosocial and spiritual care of children living with life-threatening conditions.

The compendium is available for purchase on the The National Hospice and Palliative Care Organization (NHPCO) Web site. Click here for more details.

  • Improving Care for the End of Life: A Sourcebook for Health Care Managers and Clinicians by Janice Lynch Schuster and Andrea Kabcenell
    This is a comprehensive and authoritative guide on to how to enable quality improvement for end of life care within health care systems. Written for health care managers and clinicians, it offers practical advice that can help you improve quality in your hospital, hospice, nursing home, or other health care facility. The authors include some of the world's leading authorities in the field. This results-oriented guide to making change should be read by every medical professional working in a palliative care setting. Click here to access sourcebook.

  • Tools for the Family Evaluation of Hospice Care
    The Family Evaluation of Hospice Care, created by the National Hospice and Palliative Care Organization, is intended to yield actionable information that reflects the quality of hospice care delivery from the perspective of family caregivers. The Family Evaluation of Hospice Care survey is designed to reduce the leniency bias inherent in traditional satisfaction surveys and to provide useful, meaningful, and actionable data - thereby furnishing hospices with a valid means of ensuring quality of care. The Family Evaluation of Hospice Care survey has a set of core questions and optional modules.  Hospices have the option to use the survey in its entirety, or to select as many optional modules as desired.  To access this, and other similar tools, go to: www.nhpco.org/i4a/pages/index.cfm?pageid=4645&openpage=4645

  • The FOOTPRINTS Model of Pediatric Palliative Care
    FOOTPRINTS, an advanced care planning and care coordination program, was developed in response to a critical need to move beyond the disease oriented, hospital-based model with a lack of continuity between hospital and community-based medical services. The FOOTPRINTS program is consistent with American Academy of Pediatrics' recommendations concerning the development of pediatric palliative care programs and serves as a "best practice" model for care at life's end. Developed by The Robert Wood Johnson Foundation

 Last Updated July 22, 2004

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