Resource Guide
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For your convenience, we have provided a number of links to valuable services, resources and helpful information.



Aging in the Know

This website offers up-to-date information on health and aging as well as useful links to other resources.
Phone: 800-563-4916
www.healthinaging.org/

Aging With Dignity
Purchasing directions for "Five Wishes," a simple document to put your "wishes" in writing should you become seriously ill and unable to speak for yourself.
Phone: 850-681-2010
www.agingwithdignity.org

Americans for Better Care of the Dying
A non-profit organization dedicated to social,
professional, and policy reform to improve care for persons with serious illness and their families.
Includes Agitator's Guide: 12 Steps to Get Your Community Talking about Dying.
www.abcd-caring.org

American Pain Foundation - PainAid
An on-line forum to help people with pain, called PainAid, contains pain specific message boards, chat rooms, guest speakers and an 'Ask the Expert' section.
http://painaid.painfoundation.org

Boston Grief
This website provides information on Complicated Grief and types of treatments available for helping with clinically significant grief reactions that occur following the death of a loved one.
www.bostongrief.com

Caregiving Web Site
Information about health and wellness of the
family caregiver, bill management, home care help, community support, free messaging.
www.caregiving.com

End-of-Life: Exploring Death in America
A series from National Public Radio including reference lists, broadcast transcripts, and Real Audio clips.
www.npr.org

Growth House: Guide to Death, Dying, Grief, Bereavement, and End-of-Life Resources
An award-winning gateway to resources for life-threatening illness and end of life issues.
www.growthhouse.org

Hospice & Palliative Care Federation of MA
For a consumer guide, Massachusetts hospice directory, and general information about end of life concerns.
Phone: 800-962-2973
www.hospicefed.org

Hospice Foundation of America
Resources, hospice locator guide, education opportunities, and general hospice information.
Phone: 305-538-9272
www.hospicefoundation.org

Innovations in End-of-Life Care
An international, online journal, committed to more humane, comprehensive, and coordinated care for dying persons and their families.
www2.edc.org/lastacts

Making Every Moment Count
A video that profiles five children with advanced illness, ranging from newborns to teenagers, as well as the families and health professionals who support them in hospitals, hospice programs and at home. 40 minutes. National Film Board of Canada, 2003. Available through Fanlight Productions Boston, MA 02131
Phone: 800-937-4113
email: info@fanlight.com

Massachusetts Long Term Care
This website was jointly developed by the Massachusetts Extended Care Federation and the Home & Health Care Association of Massachusetts to provide consumers with the most up-to-date, comprehensive information on the types of long term care services available, payment options and detailed listings of Massachusetts facilities and long term care provider agencies.
www.masslongtermcare.org

Massachusetts Medical Society
A professional membership organization providing a web site on healthcare proxy, advance directives, discussion guides, and links to other resources.
www.healthcareproxy.org

Massachusetts Pain Initiative
The Massachsetts Pain Initiative (MassPI) is a multidisciplinary team of healthcare professionals and consumers that work to disseminate accurate pain management information, educate healthcare professionals, raise public and patient awareness of the pain problem, promote practice change, and advocate for the removal of regulatory and legislative barriers to pain management.
www.masspaininitiative.org

Means To a Better End: A Report on Dying in
America Today

The first-ever state-by-state analysis of end of life care funded by The Robert Wood Johnson Foundation and released on November 18, 2002. For more information about the report.
The full 108 page report is available online at www.rwjf.org/files/publications/other/meansbetterend.pdf.

US Living Will Registry
The Registry electronically stores advance directives and makes them available directly to hospitals across the country through an automated system. This storage service is free and confidential.
www.uslivingwillregistry.com

 



Matters of Life and Death: Finding the Words to Say Goodbye. Carol Wogrin: Broadway Books, Inc., 2001.
A practical guide discussing the importance of communicating with the terminally ill, offering suggestions on what to say and do to offer comfort, and to make the most of the final opportunities with loved ones.

Be Prepared: The Complete Financial, Legal, and Practical Guide for Living with a Life-Challenging Condition. David S. Landay: St. Martin's, 1998.
An attorney's guide to the practical concerns created
by life threatening illness.

Dying Well: The Prospect for Growth at the End of Life. Ira Byock, MD: Riverhead Books, 1997.
Illustrated with stories by dying patients, a hopeful view of dying is offered as well as some conditions important for dying well.

Handbook for Mortals: Guidance for People Facing Serious Illness. Joanne Lynn, MD and Joan Harrold, MD: Oxford University Press, 1999.
A practical guide for choices, symptoms, and emotional and spiritual issues around death and dying.

Tuesdays With Morrie. Mitch Albom: Doubleday, 1997.
A former student connects with his college professor who is dying from ALS. Fourteen "classes with Morrie" are recounted.

The Good Death: the New American Search to Reshape the End of Life. Marilyn Webb: Bantam, 1997.
A journalist's well-researched effort to describe dying in the US, review current law, and offer recommendations for ensuring "good deaths."

Cancer Doesn’t Have to Hurt: How to Conquer Pain Caused by Cancer and Cancer Treatment. Pamela J. Haylock and Carol P. Curtiss: Hunter House, 1997.

 

RECOMMENDED REFERENCES for PROFESSIONALS PROVIDING END OF LIFE and BEREAVEMENT CARE

A Physicians' Guide to Pain and Symptom Management in the Cancer Patient'. Abrahm, Janet L.: Johns Hopkins University Press, 2000.

Living with Dying: A Comprehensive Resource for End-of-Life Healthcare Practitioners. Berzhoff, J. and Silverman, P. Eds: Columbia University Press, 2004.

The Spirit Catches You and You Fall Down. Fadimin, A.: The Noonday Press, 1997.

Oxford Textbook of Palliative Nursing. Ferrell, B., and Coyle, N., Eds: Oxford Press, 2003.

Palliative Care Perspectives. Hallenbeck, James L.: Oxford University, 2003.

Gerontologic Palliative Care Nursing. Matzo, M., and Sherman, D. Eds.: C.V. Mosby, 2004.

Handbook of Bereavement Research: Consequences, Coping and Care. Stroebe, M., Hansson, R., Stroebe, W., & Schut, H.: American Psychological Association, 2001.

 

 
 
 
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