Finding our Way: Living with Dying in America
Resources

National Hospice and Palliative Care Organization
Provides a search for hospice and palliative care, as well as statistics, resources and information.
1700 Diagonal Road, Suite 300
Alexandria, VA 22314
(703) 837-1500 
www.nhpco.org

American Academy of Hospice and Palliative Medicine
Find board-certified hospice and palliative care physicians. 
4700 W. Lake Ave.
Glenview, IL 60025-1485
(847) 375-4712
www.aahpm.org

The Last Acts® Campaign
Research latest news on legislative, educational and policy initiatives from local, state and national organizations. 
1951 Kidwell Drive, Suite 205 
Vienna, VA 22182 
(703) 827-8771
www.lastacts.org

Growth House
Excellent source for books and other publications regarding end-of-life care
San Francisco, CA
(415) 255-9045
www.growthhouse.org

Aging With Dignity
Provides Five Wishes, an advance directives planning document. 
1-888-5-WISHES 
www.agingwithdignity.org

AARP
Offers extensive information on and support for caregiving, illness, grief, widowhood, funerals, wills and estate planning and advance directives. 
601 E St., NW 
Washington, DC 20049 
1-800-424-3410 
www.aarp.org/endoflife

The Center for Advanced Illness Coordinated Care, in collaboration with the Veteran’s Administration Healthcare Network of Upstate New York at Albany
Find guidance on coping with the complexities of serious illness through the “Walking the Advanced Illness Road” section. 
113 Holland Avenue (111t)
Albany, NY 12208
(518) 626-6088
www.coordinatedcare.net

Community-State Partnerships to Improve End-of-Life Care 
Find out what individual states are doing to organize health care professionals, educators and policymakers. 
(816) 842-7110
www.midbio.org

Project on Death in America
Lists innovations in the arts, social work, education and public policy.
Open Society Institute
400 West 59th Street
New York, NY 10019
212-548-0150
www.soros.org/death

Center to Advance Palliative Care
Search the latest resources in palliative care available to hospitals and health care systems. 
Mount Sinai Hospital
One Gustave L. Levy Place, Box 1070
New York, NY 10029-6547
www.capcmssm.org

Missoula Demonstration Project
Research tool for communities interested in setting up models for improved care at the end of life. 
320 Main Street
Missoula, MT 59802 
(406) 728-1613
www.dyingwell.com/MDP.htm 

Promoting Excellence in End-of-Life Care
Research innovative programs that have received grants and technical support to change the face of dying in America. 
The University of Montana
1000 East Beckwith Avenue
Missoula, MT 59812
(406) 243-6601
www.promotingexcellence.org

Americans for Better Care of the Dying
Track changes in public policy, as well as reforms in pain management and support for family caregivers. 
4125 Albemarle Street, NW, Suite 210
Washington, DC 20016
(202) 895-9485
www.abcd-caring.org

Conversations

Aging with Dignity
The Five Wishes Project
Offers advance directive forms that can be used by residents of 33 states.
1-888-5-WISHES 
www.agingwithdignity.org

AARP 
AARP’s End-of-Life page. Offers information on having end-of-life conversations.
601 E St., NW 
Washington, DC 20049 
1-800-424-3410 
www.aarp.org/mmaturity/sept_oct00/conversation.html 

Partnership for Caring: America’s Voices for the Dying
It’s All About Talking page.
PFC Publications – Publications Office 
325 East Oliver Street
Baltimore, MD 21202
Hotline: 1-800-989-9455 (option 2)
www.partnershipforcaring.org/Talking/index.html

Widowhood

AARP Grief and Loss Programs
Offers a variety of programs in which volunteers reach out to widows.
601 E Street, NW
Washington, DC 20049
(202) 434-2260
www.aarp.org/griefandloss

Hospice Foundation of America
Offers information to professionals and families about caregiving, terminal illness, loss and bereavement. 
2001 S Street, NW, Suite 300
Washington, DC 20009
(202) 638-5419 or 1-800-854-3402
www.hospicefoundation.org 

Parents Without Partners
Offers support, information and resources for single parents.
1650 S. Dixie Highway, Suite 510
Boca Raton, FL 33432
(561) 391-8833
www.parentswithoutpartners.org 

ElderHope, LLC
Offers online support, forums, seminars, classes, and bereavement materials
P.O. Box 940822
Plano, TX 75094-0822
(972) 768-8553
www.elderhope.com


National Hospice and Palliative Care Organization
Provides a search for hospice and palliative care, as well as statistics, resources and information.
1700 Diagonal Road, Suite 300
Alexandria, VA 22314
(703) 837-1500 
www.NHPCO.org

Society of Military Widows/National Association of Uniformed Services, Inc.
Offers information and support to military widows.
5535 Hempstead Way
Springfield, VA 22151
(703) 750-1342
www.naus.org

Palliative Care
 
Palliative Care Overview
Provides an overview of palliative care and pain treatment.
www.medbroadcast.com/health_topics/death_dying/

American Medical Association, Institute for Ethics
EPEC (Education for Physicians on End of Life Care Project)
Offers information on end-of-life care education for professionals.
515 N. State St.
Chicago, IL 60610
(312) 464-4979
www.ama-assn.org

American Board of Hospice and Palliative Medicine
Provides information on palliative care and a directory of ABHPM certified physicians.
9200 Daleview Court
Silver Spring, MD 20901
(301) 439-8001
www.abhpm.org

Center to Advance Palliative Care
Search the latest resources in palliative care available to hospitals and health care systems. 
Mount Sinai Hospital
One Gustave L. Levy Place, Box 1070
New York, NY 10029-6547
www.capcmssm.org 

National Hospice and Palliative Care Organization
Provides a search for palliative care and hospice, as well as statistics, resources and information.
1700 Diagonal Road, Suite 300
Alexandria, VA 22314
(703) 837-1500 
www.nhpco.org 

Palliative Care Corner
Offers resources for patients and providers.
13947 Silven Ave NE
Bainbridge Island, WA 98110 
(206) 855-8026
www.painconsult.com

Advance Directives

Aging with Dignity
Provides the Five Wishes Living Will, legal in 33 states ($5 fee).
1-888-5-WISHES 
www.agingwithdignity.org

U.S. Department of Health and Human Services
Guidelines on advance directives.
www.hcfa.gov/pubforms/advdir.htm

AARP
Information on obtaining and completing advance directives.
601 E St., NW 
Washington, DC 20049 
1-800-424-3410 
www.aarp.org/endoflife/

American Medical Association
Booklet on advance directives.
515 N. State Street
Chicago, IL 60610
(312) 464-5000
www.ama-assn.org/public/booklets/livgwill.htm 

Partnership for Caring: America’s Voices for the Dying
Provides free, state-specific living wills.
PFC Publications – Publications Office 
325 East Oliver Street
Baltimore, MD 21202
Hotline: 1-800-989-9455 (option 2)
www.partnershipforcaring.org

Gundersen Lutheran 
End-of-Life Care
Programs that help health care providers implement advance directives in hospitals. 
1836-1910 South Avenue
La Crosse, WI 54601-5494
(608) 782-7300 or 1-800-362-9567
www.gundluth.org/eolprograms

Culture & Diversity

Tuskegee University National Center for Bioethics in Research & Health Care
The nation's first bioethics center is devoted to engaging the sciences, humanities, law and religious faiths in exploring moral issues involving research and medical treatment of African Americans and other underserved people. The Center provides leadership in cultural diversity and death and dying. 
1209 Chambliss Street, Tuskegee Institute
Tuskegee, AL 36088
(334)-724-4612
www.tubioethics.org

ACCESS to End-of-Life Care: A Community Initiative
Formed in 1997 by a group of experienced hospice nurses, social workers and administrators, this advocacy group provides education about death, dying and grieving. 
P.O. Box 460478
San Francisco, CA 94146-0478
www.access2eolcare.org

Assuring Cultural Competence in Health Care
The Health and Human Services Office of Minority Health has published national standards on culturally and linguistically appropriate services (CLAS) in health care, available online.
OMH Resource Center
P.O. Box 37337
Washington, DC 20013-7337
1-800-444-6472
http://www.omhrc.gov/clas/

Growth House Inc. 
Provides background and health agency referral services with a strong focus 
on diversity, including a section on gay and lesbian issues 
www.growthhouse.org/ 

HIVInSite 
The University of California San Francisco offers comprehensive information 
on issues surrounding HIV/AIDS 
http://hivinsite.ucsf.edu 

Spirituality & Faith

Sound Covenant
Trains volunteers and clinical caregivers in hospices, hospitals, churches, nursing homes and community service organizations to use therapeutic recorded and live music to relieve pain and suffering.
P.O. Box 523
Hershey, PA 17033
www.soundcovenant.org

Ethical Wills 
Offers a way to leave your legacy by writing down your values and beliefs.
www.ethicalwill.com 

Compassion Sabbath
An interfaith initiative to help clergy and congregations minister to seriously ill and dying people.
1021-1025 Jefferson St.
Kansas City, MO 64105
816 221-1100
www.midbio.org/cs/index.htm

Gilda's Club Worldwide
Offers emotional and social support to those living with cancer and their families.
5 Madison Ave., Suite 609
New York, NY 10016
(212) 686-9898
www.gildasclub.org

Supportive Care of the Dying: A Coalition for Compassionate Care
A non-profit coalition committed to bring about cultural change regarding pain and symptom management and relief of suffering for persons living with and affected by life- threatening illness. 
c/o Providence Health System
4805 NE Glisan St., 2E07
Portland, OR 97213
(503) 215-5053
www.careofdying.org

National Hospice and Palliative Care Organization
Provides a search for hospice and palliative care, as well as statistics, resources and information.
1700 Diagonal Road, Suite 300
Alexandria, VA 22314
(703) 837-1500 
www.nhpco.org

American Association of Pastoral Counselors
Provides information about pastoral counseling, resources and a searchable directory of pastoral counselors.
9504-A Lee Highway
Fairfax, VA 22031
(703) 385-6967
www.aapc.org

Last Rites

Beliefnet
Billing itself as the “source for spirituality, religion and morality,” Beliefnet is an online community that offers comprehensive information on death, grief, bereavement and funerals. Especially worthy are this site’s comparative religion features.
www.beliefnet.com

“Funerals: A Consumer’s Guide” 
Published by the Federal Trade Commission.
1-877-FTC-HELP
www.ftc.gov/bcp/conline/pubs/services/funeral.htm

National Public Radio’s series “Exploring Death in America” 
An exceptionally wide-ranging and well-balanced collection of “voices” and resources including bibliographies, interviews, sample chapters from important texts and personal stories.
www.npr.org/programs/death/

“On Our Own Terms – Moyers on Dying.” 
This groundbreaking PBS series, first aired in the fall of 2000, spurred an ongoing program of community outreach.
www.thirteen.org/onourownterms

The American Association for Death Education and Counseling
A professional organization dedicated to promoting excellence in death education, bereavement counseling and care of the dying. 
342 North Main Street
West Hartford, CT 06117-2507 
(860) 586-7503
www.adec.org

The Last Acts® Campaign
A national outreach program for end-of-life issues, including hospice care, public policy debates, and funding issues. A comprehensive site, it is a wonderful resource for individuals and communities seeking better care for the dying and bereaved.
1951 Kidwell Drive, Suite 205 
Vienna, VA 22182 
(703) 827-8771
www.lastacts.org

The Funeral Consumers Alliance 
Provides information for consumers about funeral ethics, affordability and legal issues.
P.O. Box 10
Hinesburg, VT
(802) 482-3437.
www.funerals.org

The National Funeral Directors Association
Offers useful consumer guidelines, demographic information and helpful links to other national and international organizations.
13625 Bishop's Drive
Brookfield, WI 53005
1-800-228-6332
www.nfda.org

Caregiving

Caring Road
Interactive site offering support and information for caregivers, including chat rooms, links and a disease directory.
www.caringroad.com

Department of Pain Medicine and Palliative Care
New York Beth Israel Medical Center
New York Beth Israel Medical Center has created the Caregiver Resource Directory to help family caregivers feel less alone and overwhelmed.
www.stoppain.org

The Family Caregiver Alliance 
Provides resources, including information about specific diseases and related public policy news.
690 Market Street, Suite 600
San Francisco, CA 94104
(415) 434-3388 
www.Caregiver.org

The American Pain Foundation 
Provides a survey to screen yourself for depression and access to on-line support. 
201 N. Charles Street, Suite 710
Baltimore, MD 21201-4111
www.painfoundation.org

Partnership for Caring: America’s Voice for the Dying
A consumer advocacy group, offers state-specific, advance directive documents to print or order. You’ll also find “Talking About Your Choices”, a booklet that introduces issues surrounding end-of-life decision-making.
PFC Publications – Publications Office 
325 East Oliver Street
Baltimore, MD 21202
Hotline: 1-800-989-9455 (option 2)
www.partnershipforcaring.org

The National Alliance for Caregiving 
Provides information from pertinent studies, tips for caregivers and a searchable resources directory.
4720 Montgomery Lane, Suite 642
Bethesda, MD 20814
www.Caregiving.org

The National Family Caregivers Association
Offers practical information and answers to frequently asked questions (FAQs), as well as “A Guide to Improving Doctor/Caregiver Communication.” 
10400 Connecticut Avenue, #500
Kensington, MD 20895-3944 
1-800-896-3650
www.nfcacares.org

The Midwest Bioethics Center 
Makes available Caring Conversations
(www.midbio.org/workbook.pdf), a workbook to help start conversations, including advance health care planning and advance directive forms.
1021-1025 Jefferson Street
Kansas City, MO 64105
1-800-344-3829
www.midbio.org

Empowering Caregivers
A comprehensive site offering information, emotional and spiritual support through featured expert columns, articles on caregiving, journal exercises, a newsletter, forums, chats, healing circle, caregiver and caregiving spotlights, inspiration, humor and more. 
National Organization For Empowering Caregivers
425 West 23rd Street Suite 9B
New York, New York 10011
(212) 807-1204
www.care-givers.com

Hospice

HospiceWeb
Offers a message board, a list of answers to frequently asked questions (FAQs) about hospice and links to numerous hospice-related sites throughout the world.
www.hospiceweb.com

American Hospice Foundation
Includes a collection of articles with practical information for the dying or the grieving. Offers “Grief at School Training Guide & Video” to help teachers respond to grieving children and on-site training workshops. 
2120 L Street, NW, Suite 200
Washington, DC 20037
(202) 223-0204
www.americanhospice.org

Hospice Foundation of America
The site provides guidelines for choosing hospice, tips for dealing with grief and other consumer resources, such as a collection of hospice readings and Web links. Call the foundation to find a hospice near you.
2001 S Street, NW, Suite 300
Washington, DC 20009
(202) 638-5419 or 1-800-854-3402
www.hospicefoundation.org

American Academy of Hospice and Palliative Medicine
Includes a selection of links to general hospice informational sites. 
4700 W. Lake Ave.
Glenview, IL 60025-1485
(847) 375-4712
www.aahpm.org

The Hospice and Palliative Nurses Association
Check on background and credentials for hospice nurses.
Penn Center West One, Suite 229
Pittsburgh, PA 15276
(412) 787-9301
www.hpna.org

National Hospice Foundation 
Informs the public about the quality end-of-life care that hospice provides; 
including information on choosing a hospice and communicating your 
end-of-life wishes. 
1700 Diagonal Rd, Suite 300 
Alexandria, VA 22314 
(703) 516-4928 
www.hospiceinfo.org

National Hospice and Palliative Care Organization
Offers a hospice database and provides statistical and educational material about hospice care. Or call the toll-free HelpLine at (800) 658-8898 to find a hospice near you.
1700 Diagonal Road, Suite 300
Alexandria, VA 22314
(703) 837-1500
www.nhpco.org

Nursing Homes & Long Term Care

Medicare’s Website 
Offers the Nursing Home Compare database, with information about every Medicare/Medicaid certified nursing home in the country, organized by state, county and city.
www.medicare.gov/Nursing/Overview.asp


“Your Guide to Choosing a Nursing Home” 
A booklet available from the Health Care Financing Administration of the U.S. Department of Health and Human Services
7500 Security Boulevard
Baltimore, MD 21244
1-800-633-4227 
www.medicare.gov/Publications/Pubs/pdf/nhguide.pdf

When a Child is Dying

Growth House
Excellent source for books and other publications regarding end-of-life care
(415) 255-9045
www.growthhouse.org

The National Organization for Rare Disorders, Inc.
Provides information about rare pediatric illnesses.
P.O. Box 8923
New Fairfield, CT 06812-8923
(203) 746-6518 
www.rarediseases.org/index.html

The Compassionate Friends
Provides grief support after the death of a child.
P.O. Box 3696
Oak Brook IL 60522-3696
(877) 969-0010
www.compassionatefriends.org

The Candlelighters Childhood Cancer Foundation
Offers support, advocacy and information to parents caring for children with cancer.
3910 Warner Street
Kensington, MD 20895
1-800-366-2223
www.candlelighters.org

Department of Symptom Control and Palliative Care
M. D. Anderson Cancer Center
Provides information and resources about symptom control and palliative care.
1515 Holcombe, Box 08
Houston, TX 77030
(713) 792-6085
www.mdanderson.org/departments/palliative/

End-of-Life Care for Children
Texas Children’s Cancer Center
Texas Children’s Hospital
Offers information and resources for families and professionals on end-of-life care for children. Also, offers “The End-of-Life Care for Children” handbook, which encompasses most of the materials on the website.
Houston, TX
www.childendoflifecare.org/home.html

Project Joy and Hope for Texas
Offers news and resource information about end-of-life care and bereavement services for families with children with life limiting illness.
PO Box 5111
Pasadena, TX 77508
(713) 944-6JOY or toll free at (866) JOYHOPE
www.joyandhope.org/contact.html

Children’s International Project on Palliative/Hospice Services (ChIPPS)
National Hospice and Palliative Care Organization
Offers information on the program to enhance the science and practice of pediatric hospice and palliative care
1700 Diagonal Road, Suite 300
Alexandria, VA 22314
(703) 837-1500 
www.nhpco.org 

Children's Hospice International
Offers information on children’s hospice care.
2202 Mt. Vernon Ave, Suite 3C
Alexandria, VA 22301
1-800-24-CHILD or (703) 684-0330
www.chionline.org

Pediatric Pain-Science Helping Children
IWK Grace Health Center, Dalhousie University
Offers resources, information and self-help for parents.
Halifax, Nova Scotia
Canada
is.dal.ca/~pedpain/pedpain.html

Violence & Unexpected Death

National Donor Family Council of the National Kidney Foundation
Provides organ donation information and to families.
(212) 809-2210 or 1-800-622-9010
www.donorfamily.org

Mothers Against Drunk Driving (MADD)
An organization working to stop drunk driving, support the victims of this violent crime, and prevent underage drinking.
(214) 744-6233 or 1-800-GET-MADD
www.madd.org

National Organization for Victim Assistance
Provides information in victim’s rights, assistance and services.
1730 Park Road NW
Washington, DC 20010
(202) 232-6682 or 1-800-TRY-NOVA
www.try-nova.org 

The Compassionate Friends
Provides grief support after the death of a child.
P.O. Box 3696
Oak Brook IL 60522-3696
(877) 969-0010
www.compassionatefriends.org

Bereaved Parents of the USA
Offers information and support to parents and families who are struggling with the death of a child.
PO Box 95
Park Forest, IL 60466
Fax (708) 748-9184
www.bereavedparentsusa.org

Parents of Murdered Children
Provides resources, support and advocacy information to parents of murdered children.
National POMC
100 East Eighth Street, Suite B-41 
Cincinnati, OH 45202 
(513) 721-5683 or 1-888-818-POMC
www.pomc.com

Grief & Loss

AARP
Information for widows and widowers.
601 E St., NW 
Washington, DC 20049 
1-800-424-3410
www.aarp.org./griefandloss/

Hospice Foundation of America
Offers information to professionals and families about caregiving, terminal illness, loss and bereavement. 
2001 S Street, NW, Suite 300
Washington, DC 20009
(202) 638-5419 or 1-800-854-3402
www.hospicefoundation.org

The Compassionate Friends
For parents who have lost a child.
PO Box 3696
Oakbrook, IL 60522
(877) 969-0010
www.compassionatefriends.org

National Hospice and Palliative Care Organization
Provides a search for hospice and palliative care, as well as statistics, resources and information.
1700 Diagonal Road, Suite 300
Alexandria, VA 22314
(703) 837-1500 
www.nhpco.org

The Center for Grieving Children 
Provides educational and support materials to grieving children, teens, their families, schools and other community agencies who support them.
49 York Street 
P.O. Box 1438
Portland, ME 04104
(207) 775-5216
www.cgcmaine.org

Vision for the Future

Partnership for Caring: America’s Voices for the Dying
Download forms for advance directives tailored to your state; join a consumer advocacy group focused on improving end-of-life care.
PFC Publications – Publications Office 
325 East Oliver Street
Baltimore, MD 21202
Hotline: 1-800-989-9455 (option 2)
http://www.partnershipforcaring.org

The National Hospice and Palliative Care Organization
Provides a search for hospice and palliative care, as well as statistics, resources and information.
1700 Diagonal Road, Suite 300
Alexandria, VA 22314
(703) 837-1500 
www.nhpco.org

American Academy of Hospice and Palliative Medicine
Find board-certified hospice and palliative care physicians. 
4700 W. Lake Ave.
Glenview, IL 60025-1485
(847) 375-4712
www.aahpm.org

The Last Acts® Campaign
Research latest news on legislative, educational and policy initiatives from local, state and national organizations. 
1951 Kidwell Drive, Suite 205 
Vienna, VA 22182 
(703) 827-8771
www.lastacts.org

Growth House
Excellent source for books and other publications regarding end-of-life care.
San Francisco, CA
(415) 255-9045
www.growthhouse.org

Aging With Dignity
Provides Five Wishes, an advance directives planning document. 
1-888-5-WISHES 
www.agingwithdignity.org

AARP
Offers extensive information on and support for caregiving, illness, grief, widowhood, funerals, wills and estate planning and advance directives. 
601 E St., NW 
Washington, DC 20049 
1-800-424-3410 
www.aarp.org/endoflife

The Center for Advanced Illness Coordinated Care, in collaboration with the Veteran’s Administration Healthcare Network of Upstate New York at Albany
Find guidance on coping with the complexities of serious illness through the “Walking the Advanced Illness Road” section. 
113 Holland Avenue (111t)
Albany, NY 12208
(518) 626-6088
www.coordinatedcare.net

Community-State Partnerships to Improve End-of-Life Care 
Find out what individual states are doing to organize health care professionals, educators and policymakers. 
(816) 842-7110
www.midbio.org

Project on Death in America
Lists innovations in the arts, social work, education and public policy.
Open Society Institute
400 West 59th Street
New York, NY 10019
212-548-0150
www.soros.org/death

Center to Advance Palliative Care
Search the latest resources in palliative care available to hospitals and health care systems. 
Mount Sinai Hospital
One Gustave L. Levy Place, Box 1070
New York NY 10029-6547
www.capcmssm.org

Missoula Demonstration Project
Research tool for communities interested in setting up models for improved care at the end of life. 
320 Main Street
Missoula, MT 59802 
(406) 728-1613
www.dyingwell.com/MDP.htm

Promoting Excellence in End-of-Life Care
Research innovative programs that have received grants and technical support to change the face of dying in America. 
The University of Montana
1000 East Beckwith Avenue
Missoula, Montana 59812
(406) 243-6601
www.endoflifecare.org

Americans for Better Care of the Dying
Track changes in public policy, as well as reforms in pain management and support for family caregivers. 
4125 Albemarle Street, NW, Suite 210
Washington, DC 20016
(202) 895-9485
www.abcd-caring.org