On The Web
www.hospicefoundation.org, Hospice Foundation of America, with information on hospice, coping with grief and loss, and end of life, both for professionals and caregivers. A concentration of articles on grief.
www.hospicenet.org/ Hospice information for patients ,families. Section on children and grief.
http://www.kokuamau.org/index.htm, all-around excellent patient/caregiver site. From Hawaii, see stages of Dying, pdf.
http://www.pbs.org/wnet/onourownterms/ “On our own terms” Bill Moyers on Dying Community tools, for example: How to be with a dying person.
http://www.getpalliativecare.org/home/ CAPC – a general palliative care site, for patients and clinicians.
http://www.caringinfo.org, A California partnership to advance palliative medicine and end-of-life care. Conversation guide (PDF) to download.
www.agingwithdignity.org To order: Five Wishes: A living will that addresses personal, emotional and spiritual needs as well as medical wishes.
http://www.caringbridge.org Caring Bridge - a not-for-profit organization providing a free online service connecting patients to friends and families.
In Print
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Ethical Wills: Putting Your Values on Paper
By Barry K. Baines, M.D. A practical and spiritual guide to creating a document that communicates the meaning of our lives for those who survive us. An ethical will helps us reflect on and share our life's experience. Second Edition, Da Capo Press, 2006. www.ethicalwill.com.
Hard Choices For Loving People
CPR, Artificial Feeding, Comfort Care, and the Patient with a Life-Threatening Illness By Hank Dunn, Fourth Edition, 2001, A & A Publishers, Inc Herndon VA, www.hardchoices.com or AAPublish@aol.com to purchase copies. 80 pages.
End-of-Life Financial Issues
2006, sponsored by NEFE, National Hospice and Palliative Care Organization and Caring Connection. Website: www.caringinfo.org, email: caringinfo@nhpco.org, 64 pages.
Your Life Your Choices
Planning for Future Medical Decisions: How to Prepare a Personalized Living Will
By Robert Perlman, MD MPH, Helene Starks, MPH, et al. A workbook that addresses, in detail, questions patients need to think about, including exercises to identify beliefs and values, choosing a health care agent, possible medical treatments, and other health choices. Download from http://www.qualitytools.ahrq.gov/summary/summary.aspx?doc_id=7303 52 pages.
Massachusetts Resource Guide for End of Life Services,
from the Massachusetts Commission on End of Life Care. For individuals, their families and caregivers. Covers all aspects of financial, legal, insurance, etc. and includes a regional directory of all service agencies. See www.endoflifecommission.org to order this guide and for other resources. 176 pages.
The Caregiver’s Guide,
2007 Edition,The Caregiver Role Resources and Supportive Services. Sponsored by the Central Massachusetts Agency on Aging, Elder Services of Worcester Area, Inc., Montachusett Home Care Corporation, Tri-Valley Elder Services, Inc. 130 pages. Order from www.seniorconnection.org, or call 508-852-5539 V/TDD for a copy. You can also download the Caregiver’s Guide from the Website.
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