Resources & Links

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New York State Resources

Hospice and Palliative Care Association of New York State

www.hpcanys.org

This statewide organization is dedicated to ensuring the availability and accessibility of quality hospice and palliative care for all persons in New York State confronted with life-limiting illness.

Live with Care

http://www.livewithcare.org

Live with Care.org, a project of the Westchester End-of-Life Coalition helps people prepare in advance of a serious health care problem, navigate the health care system and different care settings, understand care concepts and questions to ask, connect with local services and identify helpful online resources

Westchester End-of-Life Coalition

www.westchesterendoflife.org

The Westchester End-of-Life Coalition has a vision of a community where people at the end of life are comfortable, cared for and supported. The website has an excellent list of frequently asked questions and answers on hospice and palliative care, health care proxies and pain and symptom management.

National Resources

ALS Association

www.alsa.org

Provides education, advocacy and information about amyotrophic lateral sclerosis (Lou Gehrig’s disease).

Alzheimer’s Association

www.alz.org

Provides resources for families and caregivers of those suffering from Alzheimer’ disease.

Alzheimer’s Foundation of America

www.alzfdn.org

Provides resources for families and caregivers of those suffering from Alzheimer’ disease.

Caring.com

www.caring.com

Provides information and support for people caring for parents or other
loved ones.

Caring Connections


www.caringinfo.org/i4a/pages/index.cfm?pageid=1

Caring Connections, a program of the National Hospice and Palliative Care Organization (NHPCO), is a national consumer engagement initiative to improve care at the end of life, supported by a grant from The Robert Wood Johnson Foundation.

The Center for Family Caregivers

www.familycaregivers.org

Provides online support and educational materials to family caregivers.

Compassion & Choices

www.compassionandchoices.org/

Compassion & Choices is a national organization which helps patients and their loved ones face the end of life.

Compassion and Support.org

www.compassionandsupport.org/

It is a website developed and coordinated by The Community-Wide End of Life/Palliative Care Initiative, an initiative of the Rochester Health Care Forum. The goal of this initiative is to ensure that care provided to a person who is approaching death, in pain, or both, meets the person’s individual wishes and is of the highest quality, regardless of where this person lives or who is providing their care. The website has information about and sample Medical Orders for Life Sustaining Treatment (MOLST) forms.

Death with Dignity National Center

www.deathwithdignity.org

Death with Dignity National Center is one of the leaders in the death with dignity movement, based on its development, implementation and defense of Oregon’s Death with Dignity Act.

National Clearinghouse for Long-Term Care

www.longtermcare.gov

Provides information and resources on future long-term care needs.

National Alliance for Caregiving

www.caregiving.org

Provides caregiving tips and guides and an internet clearinghouse of 1,000 reviewed and rated resources for caregivers.

National Family Caregivers Association

www.nfcacares.org

Offers caregiving tips and on-line resources including a support network and resource guides.

National Hospice & Palliative Care Organization

www.nhpco.org/templates/1/homepage.cfm

National Hospice & Palliative Care Organization (NHPCO) cares for terminally ill persons and their families, and is dedicated to making hospice an integral part of the US health care system.

Oregon Department of Human Services

www.oregon.gov/DHS/ph/pas/about_us.shtml

The Oregon Department of Human Services’ webpage has all of the forms and annual reports on Oregon’s aid-in-dying law.

Pain Management Resources

www.vachss.com/help_text/pain.html#org

Pain Management Resources provides a complete listing of groups from the American Alliance of Cancer Pain Initiatives to the Pain Research Institute.

Palliative Care Policy Center

www.medicaring.org/index.html

Palliative Care Policy Center (PCPC) offers expert support to hospitals, nursing homes, health systems, hospices, and other organizations that serve individuals nearing the end of life.

Senior Advisor. com

www.senioradvisor.com

Features reviews and advice on local senior living communities, providing information for people to make an informed decision.

Senior Living Map

www.seniorlivingmap.org

Provides maps of where various types of senior living facilities, independent, assisted living, residential care, are located and then links to the facility websites

Skilled Nursing Facilities.org

www.skillednursingfacilities.org

Offers a nationwide directory of nursing homes and information about them.

World Federation of Right to Die Societies

www.worldrtd.net

World Federation provides an international link for organizations working to secure or protect the rights of individuals to self-determination at the end of their lives.

Recommended Reading

Hospice Care for Patients Who Choose to Hasten Death by Voluntarily Stopping Eating and Drinking by Judith Schwarz, PhD

Aid in Dying Language Matters by David C. Leven, JD and Kathryn Tucker, JD

Physician Aid in Dying Pros and Cons by Peter Rogatz, MD

Stopping Eating and Drinking by Judith Schwarz, PhD

The Right to Decide by Peter Rogatz, MD

The War Against Death by Peter Rogatz, MD

The Changing Climate for Physician Aid in Dying by David Orentlicher MD

Oregon’s experience with aid in dying: findings from the the death with dignity laboratory by Barbara Coombs Lee 

Implementing a Death with Dignity Program at a Comprehensive Cancer Center by Elizabeth Trice Loggers et al

The Brittany Maynard Effect: How she is changing the debate 

Recommended Radio Interviews

Talking About End-of-life Choices: Why It’s So Hard And So Important – An Interview with Judith Schwarz,PhD on Voice America’s Turn the Page with Hemda Mizrahi 

Health Professionals: Facilitator or Barriers to Choices in Dying – HealthCetera Radio interview with Judith Schwarz, PhD

Are We Experiencing a Changing Culture of How We Die in America?” – HealtCetera Radio interview with Judith Schwarz, PhD 

In the Land of Gray – It’s New Orleans, Death the podcast interview with Judith Schwarz, PhD

Recommended Films & Videos

Voluntarily Stopping Eating and Drinking: Exploring an End of Life Option for Suffering Patients –  Judith Schwarz, PhD and Tim Kirk, PhD

The Life of Death by Marsha Onderstijn

Isn’t it Delicious