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On-line Resources and Recommended Readings

For your convenience, we have provided a number of links to valuable services and helpful information. See the On-Line Resources and Recommended Readings listed below. We will update and add resources on a continuing basis.

ON-LINE RESOURCES


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.
Telephone: 850-681-2010
http://www.agingwithdignity.org/

Guide to Help Palliative Care Programs Successfully Complete
Center to Advance Palliative Care: prepared by The Joint Commission (TJC) Certification Process

DPH Forms - Death Pronouncement
Download this form to order Pronouncement of Death Forms from Massachusetts Department of Public Health 

End of Life Palliative Educational Resource Center
This site is intended to support individuals involved in the design, implementation, and/or evaluation of End-of-Life/Palliative education for physicians, nurses and other health care professionals. More specifically, the site has been designed for use by medical school course/clerkship directors, residency and continuing education program directors, medical faculty, community preceptors, or other professionals who are (or will be) involved in providing EOL instruction to health care professionals in training.
http://www.eperc.mcw.edu/EPERC

 Epidemiology of Dying & End-of-Life Experience
An online, searchable catalogue of data about care at the end of life. It was developed by The Carolinas Center for Hospice and End of Life Care and The National Hospice and Palliative Care Organization (NHPCO.) The website provides links to public data on decedents, cause of death and experience of end of life. The value-added of EDELE is that the time-consuming Internet research has been done by EDELE researchers. Users can search by topic, state, or a set of pre-written questions. Each search returns a list of websites that display data matching the search parameters, plus information about the data such as format, frequency of update, source, etc. From the search results list, users go directly to tabular, graphic or narrative data.
http://www.nhpco.org/sites/default/files/public/Statistics_Research/End-of-LifeCareDataResources.pdf

George Washington Institute for Spirituality and Health
http://smhs.gwu.edu/gwish/about/contact  

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.
http://www.growthhouse.org/

Hard Choices for Loving People: CPR, Artificial Feeding, Comfort Care, and the Patient with a Life-Threatening Illness, by Hank Dunn, A & A Publishers, Inc. 4 th Edition, 2001
A resource for professionals, patients and their families regarding end-of-life decisions
http://hankdunn.com/

The Hospice Education Network (HEN)
Offers an e-learning course that is appropriate for your hospice staff's ongoing education that they can access twenty four hours a day, at home or in the office.
http://www.hospiceonline.com/

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

Hospice and Palliative Nurses Association
A nursing organization of over 9,200 members dedicated to promoting excellence in End-of-Life nursing
http://www.hpna.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.
Telephone: 617-618-2185
www.edc.org/lastacts

Know Your Choices: A Guide for Patients with Serious Advancing Illness                                                                           A guide to enable patients or their advocates to make informed decisions about health care choices that reflect each person's goals, values, wishes and needs; outlining the types of choices that patients have when they are going through treatment for a serious life-limiting illness.                                                                                       http://www.mass.gov/eohhs/docs/dph/quality/policy-planning/initiatives/eol-english.pdf

 

Local Homeless Services:
Overnight Shelters; Veterans Shelters; Food Pantries; Women and Children; Male Shelters; Hot Meals
http://www.homelesshope.net/

Massachusetts Commission on End of Life Care

A comprehensive resource guide and directory of end-of-life care resources and services available throughout Massachusetts.
http://www.endoflifecommission.org/

Massachusetts Compassionate Care Coalition
A coalition of individuals and organization who seek to improve end-of-life care in Massachusetts.
Telephone: 617-964-1196
http://www.massccc.com/

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

Mesothelioma Cancer Network
Mesothelioma Survival Information
provides detailed information on Mesothelioma and the ways various treatments can improve the lives of patients.

 National Hospice and Palliative Care Organization
Information and legal advance directive instruments for all states are available at:
www.caringinfo.org/

National Hospice & Palliative Care Organization
1901 N. Moore Street #901
Arlington, VA 22209
Hospice Helpline: 1-800-658-8898
National non-profit organization devoted exclusively to hospice. For lists of hospices by county and general information about hospice.
http://www.nhpco.org/

Pediatric Palliative Care Network (PPCN)
PerinatalHospice.org is a clearinghouse of information about perinatal hospice and palliative care.
http://www.perinatalhospice.org/Home_Page.html

PalliativeDoctors.org

ConsumerWeb site that explains the specialty of hospice and palliative medicine and its benefits to patients and families.
http://www.palliativedoctors.org/

Pallipedia
A free online palliative care dictionary to be built by the international community, under the auspices of IAHPC.
http://www.pallipedia.org/

Massachusetts Department of Public Health's Patient Protection Line
800-462-5540
You have the right to register a complaint with any hospice provider. If your complaint is not resolved by your hospice team, or if you feel uncomfortable discussing it with them, you should contact the administrator of your hospice. In the rare event that your complaint remains unresolved, you may contact the Hospice & Palliative Care Federation of Massachusetts or the Department of Public Health's Patient Protection Line.

MA MOLST (Medical Orders for Life Sustaining Treatment)
http://www.molst-ma.org/

Office of the Inspector General IG Compliance Program, Guidance for Hospices
http://oig.hhs.gov/authorities/docs/hospicx.pdf

State Operations Manual Appendix M - Guidance to Surveyors: Hospice (Rev.)
http://dhi.health.state.nm.us/elibrary/hflcregs/Appendix%20M.pdf  

  
RECOMMENDED READINGS:  PATIENTS AND CAREGIVERS

Albom, M. (1997).Tuesdays with Morrie: An old man, a young man, and life's greatest lesson. New York: Doubleday.


Bolen, J. S. (1996).Close to the bone: Life-threatening illness and the search for meaning. New York: Scribner.


Buscaglia, L. F. (2002).The fall of Freddie the leaf: A story of life for all ages. Thorofare, N.J: Slack.


Byock, I. (1998).Dying well: Peace and possibilities at the end of life. New York: Riverhead Books.


Callanan, M., & Kelley, P. (1997).Final gifts: Understanding the special awareness, needs, and communications of the dying. New York, N.Y: Bantam Books.


Callanan, M. (2008).Final journeys: A practical guide for bringing care and comfort at the end of life. New York, N.Y: Bantam Books.


Goldberg, S. A. (2009).Lessons for the living: Stories of forgiveness, gratitude, and courage at the end of life. Boston: Trumpeter.


Hoblitzelle, O. A. (2010).Ten thousand joys & ten thousand sorrows: A couple's journey through Alzheimer's. New York: Jeremy P. Tarcher/Penguin.


Johnson, S. (1984).The precious present. Garden City, N.Y: Doubleday.


Kalina, K. (2007).Midwife for souls: Spiritual care for the dying. Boston, MA: Pauline Books & Media.


Karst, P., & Stevenson, G. (2000).The invisible string. Marina del Rey, Calif: DeVorss Publications.


Levine, S. (1987).Healing into life and death. Garden City, N.Y: Anchor Press/Doubleday.


Remen, R. N. (1996).Kitchen table wisdom: Stories that heal. New York: Riverhead Books.


St. Pierre, P. J. (2009).The art of death midwifery: An introduction and beginner's guide. Charleston, S.C.?: BookSurge.


Stickney, D., & Hernandez, G. O. (1997).Waterbugs And Dragonflies: Explaining Death To Young Children. S.l.: Continuum.


Wogrin, C. (2001).Matters of life and death: Finding the words to say goodbye. New York: Broadway Books.

HOSPICE PROFESSIONALS

Bell, K. W. (2010).Living at the end of life: A hospice nurse addresses the most common questions. New York, NY: Sterling.


Connor, S. R., & Connor, S. R. (2009).Hospice and palliative care: The essential guide. New York: Routledge.


Hospice and Palliative Nurses Association., & American Nurses Association. (2002).Scope and standards of hospice and palliative nursing practice. Washington, D.C: American Nurses Pub.


Miller, J. E., & Cutshall, S. C. (2001).The art of being a healing presence: A guide for those in caring relationships. Fort Wayne, IN: Willowgreen Pub.


Remen, R. N. (1996).Kitchen table wisdom: Stories that heal. New York: Riverhead Books.


Sheehan, D. C., & Forman, W. B. (1996).Hospice and palliative care: Concepts and practice. Sudbury, Mass: Jones and Bartlett.


Watson, M. S. (2005).Oxford handbook of palliative care. Oxford: Oxford University Press.


Worden, J. W. (1996).Children and grief: When a parent dies. New York: Guilford Press.


Worden, J. W. (1991).Grief counseling and grief therapy: A handbook for the mental health practitioner. New York: Springer Pub. Co.


Wrede-Seaman, L. (1999).Symptom management algorithms: A handbook for palliative care. Yakima, WA: Intellicard.


CLASSIC REFERENCES
Davidson, G. W. (1990).Living with dying: A guide for relatives & friends. Minneapolis: Augsburg.


Jones, L., Mack, C., Generations Together., Video Difference, Inc., & University of Pittsburgh. (1992). Learning to say goodbye. S.l.: Video Difference, Inc.


Kubler-Ross, E. (1969).On death and dying. New York: Macmillan.


Ostaseski, F., & Zen Hospice Project. (2000).Being a compassionate companion: A series. San Francisco, CA: Institute on Dying (Zen Hospice Project).

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