Bruce Himelstein Joanne Hilden
下面是面对小孩病重和死亡时，给家人的一些建议：
─ 告诉医生们，你要知道他们对你小孩的预后和治疗选择的实情。
─ 要记住，如果你因副作用太厉害而选择停止治疗，那是出自爱心的选择。
─ 找一位对症状控制专业的医生或护士。这样不管你选择孩子在家里或在医院，你的孩子都会在舒服的情况下过世的。
─ 不管你的孩子年龄有多大，谈一谈他这一生的成就。
─ 要同时照顾到其它的孩子们。他们往往被忽略，或有未解答的问题及不必要的自责。
─ 询问医生们，当你的孩子去逝时会是什么情况，这样当这天来临时你就不会太惊讶。
─ 当妳的孩子还活着的时候多制造一些纪念性的东西。多照些相片，留下一把头发或印个指纹，录音，请他画些画并为你写下一些东西来。
─ 照顾你自己，让朋友，家人及邻居帮助你。
─ 准备葬礼，让其它孩子们帮忙；那对他们也是很重要的。
─ 请医生告诉你最困难的事情 ─ 例如如果你的孩子开始使用呼吸辅助器，他就永不能再跟你讲话了。
─ 向专业人员求助哀恸的问题，即使你认为你不需要。
─ 记住，你认为对你的孩子和家人好的决定都不会是错的。
钟纯香 译
来源：[url]www.findingourway.net/[/url]
(Joanne Hilden医师是俄亥俄州Cleveland Clinic Foundation儿童肿瘤学系的系主任兼该市的Children’s Oncology Group Subcommittee on End-of-Life Care的共同主席。Bruce Himelstein教授是威斯康辛州儿童医院的缓和疗护计划主管和威斯康辛州医科大学小儿科血液学与肿瘤学组的副教授。)
参考资料
网站：
—The National Organization for Rare Disorders Inc., P.O. Box 8923, New Fairfield, Conn. 06812-8923; (203) 746-6518: Provides information about rare pediatric illnesses; [url]http://www.rarediseases.org/index.html[/url]
— Project Joy and Hope for Texas; (713) 944-6JOY or toll free at (866) JOYHOPE; [url]http://www.joyandhope.org/contact.html[/url]
— Department of Symptom Control and Palliative Care, M.D. Anderson Cancer Center, 1515 Holcombe, Box 08, Houston, Texas 77030; (713) 792-6085; [url]http://www.mdanderson.org/departments/palliative/[/url]
— End-of-Life Care for Children, Texas Children’s Cancer Center, Texas Children’s Hospital, Houston, Texas; [url]http://www.childendoflifecare.org/home.html[/url]
— Children’s Hospice International, 2202 Mt. Vernon Ave, Suite 3C, Alexandria, Va. 22301; (800) 2-4-CHILD or (703) 684-0330; [url]http://www.chionline.org[/url]
— Pediatric Pain-Science Helping Children, IWK Grace Health Center, Dalhousie University, Halifax, Nova Scotia, Canada; [url]http://is.dal.ca/~pedpain/pedpain.html[/url]
— Children’s International Project on Palliative/Hospice Services (ChIPPS), National Hospice and Palliative Care Organization, 1700 Diagonal Road, Suite 300, Alexandria, Va. 22314; [url]http://www.nhpco.org[/url]
— The Candlelighters Childhood Cancer Foundation, 3910 Warner Street, Kensington, Md. 20895; (800) 366-2223; [url]http://www.candlelighters.org[/url]
— The Compassionate Friends Inc., P.O. Box 3696, Oak Brook, Ill. 60522-3696; (877) 969-0010; [url]http://www.compassionatefriends.org[/url]
— Growth House, Inc.; (415) 255-9045: Excellent source for publications and links regarding end-of-life care; [url]http://www.growthhouse.org/[/url]
书籍：
— “Shadows in the Sun,” by Betty Davies (Brunnder/Mazel, 1999; $29.95)
— “Living with Grief: Children, Adolescents and Loss,” edited by Kenneth Doka (Hospice Foundation of America, 2000)
— “The Grieving Child: A Parent’s Guide,” by Helen Fitzgerald (Simon and Schuster, 1992; $12)
— “Some Folks Say: Stories of Life, Death and Beyond,” by Jane Hughes Gignoux (FoulkeTale Publishing, 1998; $29.95)
— “Care of the Dying Child,” edited by Anne Goldman (Oxford University Press, 1998; $29.95)
— “Hospice Care for Children,” edited by Sarah Zarbock Goltzer and Anne Armstrong-Dailey (Oxford University Press, 1993; $45)
— “Talking about Death: A Dialogue Between Parent and Child,” by Earl Grollman (Beacon Press, 1990; $15.50)
— “Helping Children Grieve: When Someone They Love Dies,” by Theresa Huntley (Augsburg, 1991; $8.99)
— “Helping Children Cope with the Loss of a Loved One: A Guide for Grownups,” by William Kroen (Free Spirit Publishing, 1996; $14.95)
— “Remembering with Love: Messages of Hope for the First Year of Grieving and Beyond,” by Elizabeth Levand and Sherokee Ilse (Fairview Press, 1995; $11.95)
— “You Are Special,” by Max Lucado (Crossway Books, 1997; $15)
— “Cat Heaven,” by Cynthia Rylant (Blue Sky Press, 1997; $15)
— “God’s Paintbrush,” by Sandy Eisenberg Sasso and Annette Compton (Jewish Lights Publishing, 1992; $16.95)
— “How Do We Tell the Children? A Step-by-Step Guide for Helping Children Two to Teen Cope when Someone Dies,” by Dan Schaefer and Christine Lyons (Newmarket Press, 1993; $18.95)
— “The Andrew Poems,” by Shelly Wagner (Texas Tech University Press, 1994; $16.50)
— “Old Turtle,” by Douglas Wood and Margaret Pike (Centering Corp, 1992; $5.95)
— “Cancer Pain Relief and Palliative Care in Children,” by World Health Organization (Geneva, 1998; $16.20)
寻找更多有关生命末期的资料，请至[url]www.findingourway.net.[/url]
索取本系列各主题的中文版，请电1-888-566-6222，或(510) 797-0600美国防癌协会北加州华人分会。