Resources

RESOURCES

( Content displayed in box )

Medical Aid in Dying — Overview

See also:  Advocacy Resources

Advance Directives — Advance Care Planning

Laws and practices related to end-of-life decisions vary from state to state. Resources referenced here are mostly for New York.
  • Overviews
  • 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 compassionandsupport.org/wp-content/uploads/sites/2/2018/03/LivingWillEnglish.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 www.health.ny.gov/publications/1430.pdf
    • Dementia Considerations  If you suffer from dementia the powers of your health care agent will continue, but additional considerations regarding your care may become important. The question of how these considerations should be addressed in advance directives is an evolving field. Several entities have developed forms and provisions that could be used. Provisions that would apply if dementia is quite advanced are offered at compassionandchoices.org/resource/dementia-provision and endoflifechoicesny.org/directives/dementia-directive/
  • Medical Orders Based on Your Preferences

Books

    • The Inevitable: Dispatches on the Right to Die, by Katie Englehart, 2021. Structured around six people representing different aspects of the right to die debate, this is an even-handed treatment of the many moral, religious, and family-related questions surrounding aid in dying. Engagingly written and deeply researched.
    • The Art of Dying Well: A Practical Guide to a Good End of Life, by Katy Butler, 2019. Packed with helpful insights and inspiring true stories, this book shows how to thrive in later life, how to get the best from our health system, and how to make your own “good dealth” more likely.
    • That Good Night: Life and Medicine in the Eleventh Hour, by Sunita Puri, M.D., 2019. Written by a palliative care doctor, this is an uplifting, deeply authentic, and insightful book that addresses life and death in the confusing, fluorescent lit world of high-tech medicine. CLICK HERE for a review by Dr. David Pratt.
    • Finish Strong: Putting Your Priorities First at Life’s End, by Barbara Coombs Lee, 2019. Written by the president of Compassion & Choices. This book describes concrete action, beyond the usual advance care planning, that we can take in the here and now to help live our best lives to the end. CLICK HERE for a review by Dr. David Pratt.
    • Having the Last Say: Capturing Your Legacy in One Small Story, by Alan Gelb, 2015. This book invites readers to write a short story based on a memory or event in their lives — in order to gain greater clarity about their life experiences. CLICK HERE for a review by Martha Rozett.
    • Modern Death: How Medicine Changed the End of Life, by Haider Warraich, M.D., 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.
    • MORE BOOKS

Essays, Articles, & Reports

    • “A Son’s Decision to Help His Father Die”, by John Rosengren. John Griffith, with a failing body and a failing mind at age 99, wants to die at home with Voluntary Stopping of Eating and Drinking. His sons are divided on the question, and their families have already struggled through a variety of end-of-life situations. A reprint from The Washington Post (November 30, 2022) is available in our library.
    • “A Better Way to Face Death”, by Daneila J. Lamas, M.D. A pulmonary and critical-care physician looks at her experience in trying to follow patients’ advance directives and proxies’ directions, and she finds the system is not performing well. A key problem is that they often are not the same as what the patient currently wants. A reprint from The New York Times (January 6, 2022) is available in our library.
    • “Defying Patients’ End-of-Life Wishes Can Be Costly” , by Paula Span. Examines a number of cases in which hospitals have not followed instructions in advance directives, and patients’ families have received sizeable payments after filing law suits. A reprint from The New York Times is available in our library.
    • “Questioning CPR as a Default Response”, by Paula Span. In light of a survey of doctors finding that they consider starting CPR on very old patients to be appropriate in situations that have a very small chance of a successful outcome, this article examines whether CPR is used too frequently. A reprint from The New York Times is available in our library.
    • “Get Your Digital Accounts Ready In Case of Death”, by Melanie Pinola. Four steps to take for simply and securely sharing your important digital account information with family members and trusted friends. A reprint from The New York Times is available in our library.
    • “With Dementia, More is Needed than a Boilerplate Advance Directive”, by Katy Butler. Suggestions for adding specific statements to your advance directives regarding the care you wish to receive if you suffer from dementia. Available at theconversationproject.org/tcp-blog/with-dementia-more-is-needed-than-a-boilerplate-advance-directive/.
    • “How to Prepare Yourself for a Good End of Life”, by Katy Butler. In addition to having advance directives for your medical care, how can you prepare for a good end of life? Based on hundreds of interviews, this article offers a useful set of guidelines and suggestions. A reprint from the San Francisco Chronicle is available in our library.
    • “How to Make Doctors Think About Death”, by Theresa Brown. A proposal for end-of-life medical treatment guidelines, by a hospice nurse. Such guidelines “would introduce clarity into end-of-life decisions” and “would help nurses and doctors acknowledge when cure is impossible, and comfort is the most compassionate, ethical route.” A reprint from The New York Times is available in our library.
    • “The Lesson of Impermanence”, by Sunita Puri, M.D. A palliative care doctor’s beautiful essay on the impermanence of life and the acceptance of death. “A chance encounter with a sand painting helped me learn how to doctor patients I knew I would lose.” A reprint from The New York Times is available in our library.
    • “The Art of Goodbye”, a series of publications of the University of Florida, Institute of Food and Agricultural Sciences (IFAS) Extension. The titles include: A Closer Look at Emerging Trends in End-of-Life Rituals, 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 edis.ifas.ufl.edu/topic_series_eole Each article can be read online or downloaded in a pdf publication format.
    • MORE ESSAYS, ARTICLES, & REPORTS

Films

    • “Passing On”, 2016 (information and viewing at https://passing-on.org/). This PBS documentary explores death and dying through a series of compelling, personal, and thought-provoking stories that will engage viewers and provide valuable information for end-of-life planning.
    • “Extremis”, 2016 (information at jessicazitter.com/). 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 www.howtodieinoregon.com/). 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.

Other Media

    • “A Conversation About End of Life Options for New Yorkers”, October 1, 2022. This webinar was presented by Ellis Medicine as part of their Ground Rounds series. In the conversation, Dr. George Giokas explains why he does not support Medical Aid in Dying, and Dr. David Pratt explains why he does. A recording is available at https://www.youtube.com/watch?v=pmgagxDlcps
    • “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 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 wamc.org/post/my-own-diane-rehm

Videos and Slides of our Programs

    • Medical Aid in Dying Legislation — Everything You Need to Know, presented by Thad Mirer and Amanda Cavanaugh. Monday, October 18, 2021. The slides from the first part are available in our library HERE, and those from the second part HERE.
    • Getting the Care You Want at the End of Life. Thursday, June 3, 2021. Available at https://vimeo.com/559243548
    • Making Decisions While Living Under the Threat of COVID-19. Wednesday, September 9, 2020. Available at https://vimeo.com/462388029
    • Where to Live and How to Pay for It. Wednesday, September 25, 2019. Available at https://vimeo.com/364844946
    • Putting Heart into End-of-Life Care. Tuesday, May 21, 2019. The video is available at vimeo.com/340034850 and the slide presentation is available in our library.
    • Funeral Arrangements — What to Know and How to Plan. Tuesday, January 15, 2019. Available at vimeo.com/313857129
    • A Conversation with Senator Neil Breslin. Wednesday, November 14, 2018. Available at vimeo.com/304154459
    • Extending Advance Care Directives — The Dementia Provision, with Judith Schwarz, PhD, RN. Wednesday, September 12, 2018. The program slides are available in our library HERE. No video will be available.
    • Get Your Affairs in Order, with Lynda Shrager (“Organize and Declutter”) and Dorothee Racette (“Digital Estate Planning — What You Need to Know”). Tuesday, March 6, 2018. Part One available at vimeo.com/259730743 and Part Two at vimeo.com/261015050
    • Passing Resolutions—How Your Community Can Help Influence the Passage of Medical Aid in Dying, with Amanda Cavanaugh. Monday, January 8, 2018. Available at vimeo.com/251661834
    • Hospice and Palliative Care, with Beth Mahar. Monday, July 10, 2017. Available at 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 vimeo.com/222398882 The PowerPoint slides that Dr. Schwarz presented are available in our library, in pdf form for viewing.
    • MORE VIDEOS AND SLIDES OF OUR PROGRAMS

Organizations

    • 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. 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. 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 Resources section of their website provides useful information. www.deathwithdignity.org/
      Death with Dignity National Center and Death with Dignity–Albany are independent organizations, but we are both part of the New York Alliance for Medical Aid in Dying.
    • The Completed Life Initiative The Completed Life Initiative, founded in 2019, was created in an effort to promote self-determination and dignity at the end-of-life. They have produced a series of excellent conferences and programs, whose recorded videos are available on their website. They also provide other resources and engage in various activities. https://completedlife.org/
    • Aging with Dignity Aging with Dignity is a national non-profit organization that has developed a program, Five Wishes, that helps structure the conversation for making end-of-life decisions. 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. This is an excellent resource for preparing to make Advance Directives. theconversationproject.org/
The slides from the presentation can be reviewed separately, in PDF format, at codaconversations.com/uploads/ADVANCE_PLANNING__IN_THE_COVID-19_PANDEMIC.pdf Gretchen Brauer-Rieke has been a nurse and nurse educator, and now is an advance care planning facilitator. Her website is codaconversations.com

Comments are closed.