Palliative Care for Infants, Children, and Adolescents: A Practical Handbook

by Kathleen M. Foley (Foreword), Brian S. Carter (Editor), Marcia Levetown (Editor)

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. Early chapters present the epidemiology of palliative pediatrics, ethical principles, education, and advocacy. Contributors next address the decision-making process, holistic symptom management, communication with the child and family, as well as their psychological and spiritual needs, and such issues as bereavement and caregiver suffering. Individual chapters focus on palliative care in specific settings (NICU, PICU, home, school, and community) and for major conditions (genetic disease, HIV, and cancer). Case studies discuss the experience and perspective of parents. Intended for primary care doctors, pediatric practitioners and specialists, home care nurses, hospice workers, and pastoral counselors, the book also includes a list of additional resources and support organizations for professionals and family members.

Hurricane Voices Reading List

In developing the Family Reading List, well over one hundred books, videos and pamphlets were reviewed for accuracy and relevance to the target audience; parents with breast cancer who want to utilize books to help them help their children. We have added several outstanding books for the 2nd edition of the Family Reading List, which continues to present books and videos of the highest quality.

Raising an Emotionally Healthy Child When a Parent is Sick - A Harvard Medical School Book

Based on a Massachusetts General Hospital program, Raising an Emotionally Healthy Child When a Parent is Sick covers how you can address children's concerns when a parent is seriously ill, how to determine how children with different temperaments are really feeling and how to draw them out, ways to ensure the child's financial and emotional security and reassure the child that he or she will be taken care of.

About the Authors: Paula K. Rauch, M.D., is founder and director of the PACT program at Massachusetts General Hospital, where she also serves as chief of the Child Psychiatry Consultation Service. She is an assistant professor of psychiatry at Harvard Medical School. Anna C. Muriel, M.D., M.P.H., is on the PACT staff at Massachusetts General Hospital and an instructor in psychiatry at Harvard Medical School.

The Private Worlds of Dying Children

"I am an aspiring doctor and this text was a required reading for a pediatric internship. I read this book before my internship began and it helped me to get through this heart wrenching experience. At first it was difficult to read just because it really tugs at your emotions. However, once I made it past the first few stories I could not put the book down until I finished. Myra Bluebond-Langner does an incredible job of not only telling the stories of dying children, but she also gets into the innocent minds of the children enduring this difficult battle. This book is a must read for any aspiring pediatrician, or any aspiring physician for that matter. The way an innocent child views the innevitable can shed some light on how others may view the same situation. Althought parents might find this a tough read, it may help them to understand their child's point of view as well."

Parenting a Dying Child

BC Children's Hospital and Canuck Place Children's Hospice has created a new set of resources for families and individuals involved in pediatric palliative care. This packet is called "Parenting a dying child" and has found worldwide interest and acclaim. It has won the 2004 award for excellence in Patient/Family Education Materials with the Association of Pediatiric Oncology Nurses and has been sold worldwide. You can purchase this item here

A Child in Pain: How to Help, What to Do, by Leora Kuttner

	This is an excellent book for caregivers and professional regarding pain in children, when we feel unable to help the hurt. This book describes different types of pain and techniques/drugs to help manage their pain. It teaches how to advocate for children and ways to help them describe what they are experiencing. (from Child Life Council)
	The book has now been reprinted and it is available from the BC Children's & Women's Hospital bookstore

When A Child Is Dying (updated May 9, 2004)

Death And The Adolescent

This concise and practical handbook shows how you can help teen students affected by death, including a complete outline for a ten-week school-based grief support group. The book is an excellent resource for parents, teachers, school counselors, pastoral care providers, and bereavement counselors seeking clear advice on how to conduct support groups in schools. Perspectives on various aspects of teen bereavement are given in enough detail to be of value to non-specialists without overwhelming the reader with academic commentary.

Remember the Secret by Dr. Elisabeth Kubler-Ross

A wonderfully gentle way for children to learn about the value of life as well as the reality of death and dying. Buy It Here

On Children And Death by Dr. Elisabeth Kubler-Ross

In this "book on death and dying Kubler-Ross offers help to dying children, their parents, and others who work with them. . . . Through case studies and correspondence with relatives of dying children, she {attempts to} demonstrate how these children and those who love them can best survive this traumatic experience. Kubler-Ross argues that children intuitively know when they are dying and want and need to talk about it. She offers practical help to make that communication easier, encouraging expression of the natural fears and intuitions about death." Buy It Here

Beginnings at the End: A Twelve-Step Design for Living at the End of Life -- Michael Appleton, MD

This short book is a guide for terminally ill people, their caretakers, and their loved ones. Arguing that the end of life presents a final opportunity for growth, hospice physician Michael Appleton offers practical advice, hope, and stories about how his patients have dealt with this stage of their lives.

Heart-to-Heart: Caring for the Dying

The series draws from over 80 hours of tape and includes remarkable moments with people who are facing death, their families and those who are helping them along the journey. While the stories are personal, the themes are universal as we all struggle to come to terms with the passing of friends, family members, and ultimately, ourselves. It examines the barriers to good care that arise from cultural misunderstanding, from fear over the use of morphine and other drugs, and from lack of funding to pay for good programs. It provides ideas, examples and inspiration for those who are searching for a good path on the journey to death.

Pull Up Three Chairs

	Cynthia X. Pan, MD and Diane E. Meier, MD / videographers: Lisa Hirsh and Deborah Reiff. VHS, 2002.
	VHS Video-Interviewing multidisciplinary team members consisting of fellows, residents, and a nurse practitioner on their professional and personal experiences and reflections rotating through palliative care consult service.
	Access the video at the CAPC website: Pull Up Three Chairs Video

Like Rembrandt Draperies: A Portrait of Cathy Tingle

This hour long videotape documents the life of Cathy Tingle, a woman who lived with endometrial cancer and adenocarcinoma for 10 years. The video, designed to raise issues about health communication, shows interviews with her oncologist, friends and family and with Cathy herself. A detailed discussion guide accompanies the video and provides specific questions for each of the key themes in the film. The guide describes various ways to use the video (e.g. large group, small group, as a stimulus for discussion or reflective writing) and tips for facilitating discussion and encouraging participation. The videotape and discussion questions are suitable for medial students, residents, faculty and community practioners. Creation Date: 3/2002

For more information contact Lisa Kaplan (Producer) at: Lifeworks Videos 359 Aylesford Place Lexington, KY 40508 (859) 225-1060 and (859) 225-4466 lisa_kaplan@hotmail.com

End-of-Life DVD/Video

	The Virginia Cancer Pain Initiative in association with the Virginia Association for Hospices announces the availability of the DVD/video "Making Difficult Decisions: An End of Life Discussion". The video promotes discussion among professionals and the public about barriers to good end of life care, advance planning, hospice and palliative care options and choices in the final transition.
	An accompanying Viewer's Guide with discussion questions and related resources makes this an excellent educational resource for patients, family members, and health care professionals. For more information or to order your copy ($10.00 plus shipping), contact Laura Pole

Palliative Care In The Home

This practical reference book by noted palliative care specialists gives clear guidelines on how to provide high-quality palliative care in home settings. The authors affirm that excellent palliative care can be delivered in the home, even if the patient is eventually admitted to a hospital or palliative care unit. Surveys consistently show that most people would prefer to be cared for at home rather than in an acute care facility such as a hospital. The clear and straightforward style makes the book usable as a reference by a wide range of readers. Highly recommended for physicians, nurses, and other care providers, as well as motivated non-professional caregivers with interest in the subject.

The Principle of Hope, by Sherwin B. Nuland

The Case Against Assisted Suicide: For the Right to End-of-Life Care edited by Kathleen Foley and Herbert Hendin (Johns Hopkins University Press, 371 pp., $49.95)

Standing the Watch: Memories of a Home Death, by Rebecca Brown

	The story of the author's encounters with the death of the people she has loved, and her father-in-law's last thirteen days of life. -- June 2002 ISBN: 0-595-22750-3
	To Order: 1-877-823-9235 Or order online from Amazon; or Barnes & Noble

Bereaved Parents (video)

This specially adapted Phil Donahue program looks at the overwhelming sense of loss and even guilt that parents experience at the death of a child. The program suggests that parents can survive their bereavement by sharing their grief with others, by thinking and speaking about the lost child, and, especially, by recalling happy memories of him or her. Care must be taken to help other children in the family come to terms with their loss, and the program suggests that counseling is often necessary to accomplish this. BKU1736

To order: P.O. Box 2053 Princeton, WI 08545-2053, United States Tel: 800/275-5126

Empty Cradle, Broken Heart - Surviving the Death of Your Baby

Death of a baby is one of the most difficult types of grief. This book takes a caring look at bereavement and healing following miscarriage, stillbirth, or infant death due to other causes. The author doesn't tell you what you should be feeling, but helps you recognize common reactions and ways of moving toward recovery. The emphasis on how you can heal by mourning the loss and moving on without denying the pain.

No fears, no tears... 13 years later: Children coping with pain

	Kuttner, Leora (Executive Producer); McDonald, Lawrence (Director) / 1998
	Children, now young adults, who participated in pain management program "No Fears No Tears, 1986." discuss the impact of cancer on their lives. Description: 1 VHS video: 46:42 min.
	You can purchase this video here at the BC Children's & Women's Hospital bookstore

Conquering Your Child's Chronic Pain: A Pediatrician's Guide to Reclaiming a Normal Childhood

A nationally recognized leader in the field of pediatric pain management, Dr. Lonnie K. Zeltzer offers an invaluable guide to control the pain that plagues your child, from headaches to arthritis, irritable bowel syndrome, fibromyalgia, and more. Drawing on more than 30 years of study and combining modern medicine with complementary methods such as hypnotherapy, yoga, acupuncture, and biofeedback, Dr. Zeltzer explains how to

*Soothe the nervous system
*Reactivate the body’s natural pain control mechanisms
*Determine which medications are most effective
*Implement relaxation techniques
*Reduce parents’ guilt

Jewish Ritual, Reality and Response at the End of Life - by Rabbi Mark A. Popovsky

Hope in the Face of Cancer: A Survival Guide for the Journey You Did Not Choose

"Dr. Amy Givler has given the world a much needed book! As a physician, she approaches her diagnosis of cancer with much more knowledge than the average person. As she travels the journey from diagnosis to wellness, she takes the reader along with her, offering helpful insight and educated direction. Dr. Givler openly and honestly shares her thoughts and trials, both positive and negative, and the effects her illness had on her young family. Along with the physical and emotional details of her experience, Dr. Givler shares the hope she found in her strong faith in God. This book is a must for anyone who has cancer or knows anyone who has cancer. The understanding gained from Dr. Givler's experience will equip the reader to better understand what friends and loved ones are going through."

The Four Things That Matter Most - A Book About Living by Ira Byock, M.D.

"This beautiful book, full of wisdom and warmth, teaches us how to protect and preserve our most valuable possessions --the relationships with those we love. It shows that the things that matter definitely aren't 'things,' and how to empower your life in the right direction." -- Dr. Stephen R. Covey, author of "The 7 Habits of Highly Effective People"

ourneying East : Conversations of Aging and Dying  by Victoria Dimidjian;

Buddhist spiritual leaders discuss aging and dying. Journeying East includes comprehensive and original interviews with Ram Dass, Michael Eigen, Norm Fisher, Thich Nhat Hanh, Joan Halifax , Rodney Smith, and others—each of whom has understood and met the challenges of later life. Their intellectual and spiritual wisdom, leavened with humor, will comfort anyone dealing with the realities of aging and death.

Reinventing Medicine: Beyond Mind-Body to a New Era of Healing by Larry Dossey

Larry Dossey is known as the father of mind-body medicine and perhaps best known for his advocacy of the role of prayer in healing. Addressing such major conduits of nonlocal healing as dreams, prayer and being in "the zone," Dossey offers moving examples of human healing that seem inexplicable by other means. He is at his most eloquent in his concluding chapter on "Eternity Medicine," or the compassionate treatment of the dying.

End of Life: Information and Decisions to Consider Before Death

"I'm not afraid of dying. I just don't want to be there when it happens." Along with inspirational quotes from philosophers and poets, this Woody Allen quote helps readers of a resource booklet address their mixed feelings about dying. The 62-page booklet is a project of the Baraboo-Dells Area (WI) End of Life Care Coalition as a first step "to build a shared language about death and dying." Information about the booklet and coalition are available from Rev. William Beers, Hospital Chaplain, St. Clare Hospital Pastoral Services, Baraboo, WI. Telephone 608-356-1511

The House on Beartown Road: A Memoir of Learning and Forgetting by Elizabeth Cohen

In this moving yet unsentimental memoir, Cohen chronicles the year her aging father, Sanford, suffering from mid-to-late-stage Alzheimer's, came to live with her and her baby, Ava, in a New York State farmhouse. The three endure a cold winter, Ava's teething and the ravages of Alzheimer's. Her sister says, "The parallels she draws as her daughter learns and my father forgets are intriguing. She extrapolates humor at every corner and ... what could have been a scathing self pity party is actually a lovely story of courage, memories and hope".

The Book of Jesse: A Story of Youth, Illness, and Medicine

This is the story of a child/young adult who had the misfortune of multiple health problems from the age of three until his death at 19. But even more than Jesse's story, this is the narrative of and by Jesse's father as he recalls the emotional rollercoaster accompanying the abbreviated span of his oldest son's life. The author kept detailed journals of his and his son's experiences with the health care professions, while also collecting the boy's artwork which appears to be Jesse's personal record of his own internal struggle.

The Courage To Laugh

This remarkable book is a poignant and inspirational reminder of the life-affirming nature of the human spirit, even under the most difficult circumstances. In the words of cartoon character Roger Rabbit, "Sometimes a laugh is the only weapon we have." Allen Klein, author of The Healing Power Of Humor, uses a simple and approachable format to share stories of how people faced with death and illness use laughter for many purposes. It can serve as a defense mechanism, a tool for encouragement, a bonding between those in difficult situations, and a reminder that life goes on despite the worst. At its best it is a tool for coping, communicating, and connecting.

Handbook For Mortals (excerpts are available online)

The Tunnel and the Light --
Essential Insights on Living and Dying With a Letter to a Child With Cancer

by Elisabeth Kubler-Ross