Advance Directives — Advance Care Planning
Laws and practices related to end-of-life decisions vary from state to state. Resources referenced here are for New York.
- “Advance Directives: Making Your Wishes Known and Honored,” New York State Office of the Attorney General. The authoritative overview in New York. Available at: https://ag.ny.gov/sites/default/files/advancedirectives.pdf
- “Advance Care Planning: Know Your Choices, Share Your Wishes,” Commmunity Conversations on Compassionate Care, a non-governmental New York group. Available at: http://www.compassionandsupport.org/pdfs/about/B-1576_Excellus_2010_Complete.pdf
- Expressing Your Preferences
- Living Will. A Living Will is a written declaration of your health care wishes, and New York courts have ruled that it serves as “clear and convincing evidence” of these wishes. Because New York does not have a statute governing living wills, there is no standard or prescribed form. An example is available at http://www.compassionandsupport.org/pdfs/research/Living_Will_Form.pdf
- Health Care Proxy. A Health Care Proxy allows you to appoint someone to make health care decisions for you when you are unable to make these decisions for yourself, and it allows you to declare your health care wishes to guide or limit your appointed agent. Information, instructions, and the form are available in a packet from the NYS Department of Health at https://www.health.ny.gov/publications/1430.pdf
- Medical Orders Based on Your Preferences
- DNR. A Do Not Resuscitate (DNR) order from your doctor instructs other medical professionals not to perform CPR when your heartbeat or breathing stops. A DNR form effective outside a hospital is available at https://www.health.ny.gov/forms/doh-3474.pdf
- MOLST. In a Medical Order for Life-Sustaining Treatment (MOLST) you declare your wishes regarding medical treatments (including resuscitation and other life-sustaining treatments), and your doctor’s signature establishes your wishes as medical orders that are effective in hospitals and in other medical facilities and settings. FAQs are available at https://www.health.ny.gov/professionals/patients/patient_rights/molst/frequently_asked_questions.htm The form is available at https://www.health.ny.gov/forms/doh-5003.pdf
Recently added books are marked with an asterisk (*).
- * Modern Death: How Medicine Changed the End of Life, by Haider Warraich, 2017. “From the minutest exploration of how cells die to the larger philosophical questions about life and death, Haider Warraich invites the reader to contemplate the art and science of death and dying.”
- The Good Death: An Exploration of Dying in America, by Ann Neumann, 2016. This book describes the author’s extensive search for information about how to die well.
- When Breath Becomes Air, by Paul Kalanithi, M.D., 2016. The posthumous memoir of a brilliant neurosurgeon who died of lung cancer at age 37. The book covers his early life and education, his dealing with impending death, and his consideration of “What makes a life worth living?”
- * The Conversation: A Revolutionary Plan for End-of-Life Care, by Angelo Volandes, M.D., 2015. This book argues that if doctors explain the options for having or forgoing various medical treatments and interventions, then patients with advanced illness can tell doctors how they wish to spend the remainder of their lives.
- Being Mortal; Medicine and What Matters in the End, by Atul Gawande, M.D., 2014. The New York Times best-seller about the triumphs of modern medicine and the challenges of aging and dying from the perspective of a doctor and a compassionate human being.
- Knocking on Heaven’s Door, by Katy Butler, 2014. A combination of a personal memoir and expert investigative reporting, focused on her parents’ desires for “good deaths” and the forces within the medical establishment that stood in the way.
- * Grave Matters: A Journey through the Modern Funeral Industry to a Natural Way of Burial, by Mark Harris, 2007. This book examines the new green burial movement by following a dozen families who conduct natural burials for their dead, including burials in backyard grave sites and “natural cemeteries,” as well as sea burials and funerals at home.
- Making Friends with Death; A Buddhist Guide to Encountering Mortality, by Judith L. Lief, 2001. Practical exercises for deepening awareness and appreciation of change; practices for cultivating kindness as well as caregiver guidelines, drawn from the Buddhist tradition.
- Dying Well; The Prospect for Growth at the End of Life, by Ira Byock, M.D., 1997. A longtime spokesman for the hospice movement, the author provides a blueprint for families, showing them how to deal with doctors, how to talk to friends and relatives, and how to make the end of life as meaningful and precious as the beginning.
- * A Year to Live: How to Live This Year as if It Were Your Last, by Stephen Levine, 1997. Imagine that you had only one year left to live. What would you do differently? Stephen Levine provides a year-long program of strategies and guided meditations to help the reader work through this exercise.
- On Death and Dying, by Elizabeth Kubler-Ross, MD., 1st ed. 1969. This is a classic but is still relevant today, especially as it advocates for respecting the dignity and wishes of the dying.
Essays, Articles, & Reports
- “The Art of Goodbye”, a series of five publications of the University of Florida, Institute of Food and Agricultural Sciences (IFAS) Extension. The subjects are: Communication Considerations, Exploring Health Concerns, Exploring Self-Reflection, Planning Final Arrangements, and Why People Are Talking About the End of Life. This End of Life Education series is available at http://edis.ifas.ufl.edu/topic_series_eole Each article can be read online or downloaded in a pdf publication format.
- “Lobby Day 2017 — Reflections”, by Susan Harris, Ed.D. An essay describing her first experience in lobbying members of the New York State Senate and Assembly, as part of a Compassion and Choices campaign, for passage of the Medical Aid in Dying Act. She also relates the personal experience that led her to become an advocate. The essay is available in our library.
- “Somebody with a Backbone: Tips for Choosing a Health Care Proxy”, a blog post by Ellen Goodman, founder of the Conversation Project. This interview/post highlights some of the personal choices that need to be made in choosing a health care proxy. It is available at: http://theconversationproject.org/tcp-blog/somebody-with-a-backbone-tips-for-choosing-a-health-care-proxy/ At the end of the post there is a link to a more general discussion of choosing, and also being, a health care proxy.
- “Bringing Death Out of the Closet”, by Jeff Baltes and Bonnie Edelstein, CommUNITY, April, 2016. This article, presented for the LGBQT community, reviews the proposed New York Medical Aid in Dying Act and introduces the work of Death With Dignity–Albany. Available in our library.
- “Oregon’s Experience with Aid in Dying”, by Barbara Coombs Lee, Annals of the New York Academy of Sciences, July 2014. This article, written by the president of Compassion and Choices, reviews data and scientific investigations on the operations of Oregon’s experience with its 1994 Death with Dignity Act. Available at https://www.compassionandchoices.org/wp-content/uploads/2016/02/BCL-Annals-rebuild-12-2014.pdf
- “Extremis”, 2016 (information at http://www.imdb.com/title/tt5538078/). This short documentary (24 minutes) shows the heart-wrenching emotions that accompany end-of-life decisions as doctors, patients, and families in a hospital ICU face harrowing choices. Nominated for an Academy Award (2017) and winner of awards at the Tribeca and San Francisco film festivals (2016), this film is distributed by Netflix.
- “How to Die in Oregon”, 2011 (information at http://www.imdb.com/title/tt1715802/). In 1994 Oregon became the first state to legalize physician-assisted suicide. At the time, only Belgium, Switzerland, and the Netherlands had legalized the practice. “How to Die in Oregon” tell the stories of those most intimately involved with the practice today — terminally ill Oregonians, their families, doctors, and friends — as well as the passage of an aid-in-dying law in Washington State.
- “A daughter to father heart-to-heart: Tom & Jennifer Brokaw at TEDxStanford”, 2012. Former NBC newsman Tom Brokaw and his daughter Dr. Jennifer Brokaw discuss the importance of end-of-life planning, especially advance directives, and related issues. Streaming video available at https://www.youtube.com/watch?v=OCFwlysc56c
- “On My Own by Diane Rehm”, April 10, 2017. On WAMC’s The Roundtable, Joe Donahue interviews Diane Rehm about her new book On My Own. In her book and the interview, beloved NPR radio host Diane Rehm speaks about the long drawn-out death (from Parkinson’s) of her husband of fifty-four years, and of her struggle to reconstruct her life without him. Streaming audio available at http://wamc.org/post/my-own-diane-rehm
Videos of our Programs
- Hospice and Palliative Care, with Beth Mahar. Monday, July 10, 2017. Available at https://vimeo.com/228665743 The slides presented are available in our library, in pdf form for viewing.
- Voluntarily Stopping Eating & Drinking, with Judith Schwarz, PhD, RN. Tuesday, June 13, 2017. Available at https://vimeo.com/222398882 The PowerPoint slides that Dr. Schwarz presented are available in our library, in pdf form for viewing.
- Palliative Care and Hospice, with Dr. David Pratt. Wednesday, December 7, 2016. Available at https://vimeo.com/197916413 The PowerPoint slides that Dr. Pratt presented are available in our library here, in pdf form for viewing. Also, a WNYT feature about a local palliative care program, by Benita Zahn, is available at http://wnyt.com/in-depth/in-depth-palliative-care/4339995/
- Controlling Your Destiny: Legal Documents That Work, with Attorney Lou Pierro, Esq. Tuesday, October 25, 2016. Available at https://vimeo.com/191491688
- Interfaith Dialogue and Perspectives on End-of-Life Options, with Dr. David M. Gordis, Rev. Dr. Eric S. Shaw, and Dr. William Levering. Thursday, September 29, 2016. Available at https://vimeo.com/188313601
- Compassion & Choices
This is the largest national organization dedicated to end of life issues. They offer free consultation, planning resources, referrals and guidance, and work across the nation to protect and expand options at the end of life. Compassion & Choices has a New York Campaign Director and is very actively pursuing the End of Life Options legislation. Death with Dignity-Albany has collaborated with Compassion & Choices in participating in a Lobby Day at the NYS Legislature, and Compassion & Choices leaders have been frequent speakers at our meetings. https://www.compassionandchoices.org/
- End of Life Choices New York
End of Life Choices New York, through leadership, advocacy, education and counseling, seeks to expand choice at the end of life and improve the quality of care for New Yorkers, ensuring that their values and wishes are respected. They help patients and their loved ones face the end of life with calm facts and choices of action during a difficult time. They aggressively pursue legal reforms to improve pain care and palliative care. They engage in a variety of educational and advocacy efforts to ensure that advance directives and end of life wishes are honored. They are now engaged in a major effort to establish aid in dying in New York either through litigation or by legislation. http://endoflifechoicesny.org/
- Death with Dignity National Center
The Death with Dignity National Center is a non-profit organization that has led the legal defense of the Oregon Death with Dignity Law for 20 years. The mission of the center is to promote Death with Dignity laws based on its model legislation, the Oregon Death with Dignity Act, both to provide an option for dying individuals and to stimulate nationwide improvements in end-of-life care. The Research Center of their website provides useful information, including a page on Terminology. Our local organization, Death with Dignity-Albany, is in full support but is not officially affiliated with the national center. http://www.deathwithdignity.org/
- Aging with Dignity
Aging with Dignity is a national non-profit organization that has developed a user-friendly advance directive document, Five Wishes, that structures the conversation for making end-of-life decisions. In completing this living will, people can specify a health care agent and express their wishes about care and treatment. When signed and witnessed, the Five Wishes document meets the legal requirements for an advance directive in New York., that helps start and structure important conversations about care in times of serious illness. http://www.agingwithdignity.org/index.php
- The Conversation Project
The Conversation Project is dedicated to helping people talk about their wishes for end-of-life care. Their Starter Kit is available online and is designed to help people get their thoughts together and hold conversations with their loved ones. This is an excellent resource for preparing to complete an Advance Directive. http://theconversationproject.org/