VSED References

For Academics

May 29

About

Here you will find references related to voluntarily stopping eating and drinking (VSED). This is a collection of articles around the following issues.

Caretaker narratives or news articles describing individual experiences.
Commentaries about VSED overall or about legal or ethical considerations.
Position papers from organizations around the world.
Empiric studies that collected data from groups of patients, caretakers, or providers about VSED frequency, experiences, or attitudes.
Other resources.

Narrative / News

AFP. 2020. “Alain Cocq Wants to Let Himself Die Again - He Announced That He Would Cease All Hydration, Diet, and Treatment Except Painkillers from Monday.” Le Monde, Oct. 10.

Aleccia, JoNel. 2017. “Dementia Patient at Center of Spoon-Feeding Controversy Dies.” Kaiser Health News, (October 12). Available here.

Aleccia, JoNel. 2017a. “Despite Advance Directive, Dementia Patient Denied Last Wish, Says Spouse.” Kaiser Health News, August 21, 2017. Available here. Accessed December 9, 2019.

Aleccia, JoNel. 2017b. “New Instructions Could Let Dementia Patients Refuse Spoon-Feeding.” Kaiser Health News, November 3, 2017. Available here. Accessed December 13, 2019.

Aleccia, JoNel. 2018. “Aggressive New Advance Directive Would Let Dementia Patients Refuse Food.” Kaiser Health News, March 30, 2018. Available here. Accessed December 13, 2019.

Aleccia, JoNel. 2020. “Diagnosed with Dementia, She Documented Her Wishes for the End. Then Her Retirement Home Said No.” Washington Post, January 18, 2020. Available here. Accessed January 18, 2020.

Ann, Laurie. 2016. “Mom’s VSED Journey.” Narrative Inquiry in Bioethics, 6, no. 2: E1-E4.

Badham, John (director). 1981. “Whose Life Is It Anyway?” (film). Beverly Hills: Metro-Goldwyn-Mayer.

Bahrampour, Tara. 2019. “At 94, She Was Ready to Die by Fasting. Her Daughter Filmed It.” Washington Post, November 3.

Battin, Margaret P. 1996. The Least Worst Death. New York: Oxford University Press.

Baumgartner, Fritz. 2006. “The Ethical Requirement to Provide Hydration and Nutrition.” Archives Internal Med., 166: 1324-1325.

BBC. 2014. “Debbie Purdy: Right-to-Die Campaigner Dies.” BBC News, Dec. 29.

Blair, Henry. 2016. “Hunger Games.” Narrative Inquiry in Bioethics, 6, no. 2: E7-E9.

Brown, David L. 2016. “She Never Met a Stranger—Death is No Stranger.” Narrative Inquiry in Bioethics, 6, no. 2: E4-E7.

Brewer, Colin O. 2019. Let Me Not Get Alzheimer's Sweet Heaven: Why Many People Prefer Death or Active Deliverance to Living with Dementia. Bloxham: Skyscraper Publications.

Brosio, Martha Risberg. 2019. The Last Ten Days – Academia, Dementia, and the Choice to Die: A Loving Memoir of Richard A. Brosio. Gorham, ME: Myers Education Press.

Burton, Keith. 1989. “A Chronicle: Dax’s Case as It Happened.” In Dax’s Case: Essays in Medical Ethics and Human Meaning, edited by Lonnie D. Kliever, 1-12. Dallas: Southern Methodist University Press. Reprinted in Steinbock et al., 2013, 343-347.

Byock, Ira. 1995. “Patient Refusal of Nutrition and Hydration: Walking the Ever-Finer Line.” American Journal of Hospice and Palliative Care, 12, no. 2: 8-13.

Byock, Ira. 2014. Four Things that Matter Most: A Book About Living. New York: Simon and Schuster.

Campaign for Dignity in Dying. 2019. The Inescapable Truth. Available here.

Cantor, Norman L. 2020. My Eccentric Family: Memories from a Communist, Mafioso, Zionist Past. Tel Aviv-Yafo, Israel: eBookPro Publishing.

Cantor, Norman. 2017. “My Revised Advance Directive.” Available here.

Chandler-Cramer, M. Colette. 2014. “The Advance Directive for Dementia of M. Colette Chandler-Cramer.” Included in Menzel, Paul T., and M. Colette Chandler-Cramer. 2014. “Advance Directives, Dementia, and Withholding Food and Water by Mouth.” Hastings Center Report, 44, no. 3 (May-June): 23-37. Available here.

Christie, Kate. VSED Resources NW VSED Handbook.

Chug, Kiran, Stacey Wood, and Tim Donoghue. 2010. “Margaret Page Dies in Rest Home after 16 Days.” Dominion Post, March 31.

Culzac, Natasha. 2014. “Grandmother Starves Herself to Death After UK's Assisted Suicide Laws Left Her with No Alternative.” Guardian, October 19.

Douglas, Carol, and Bill Lukin. 2016. “My Life—My Death.” Narrative Inquiry in Bioethics, 6, no. 2: 77-78.

“Dying Wish.” Available here.

Dziedzic–Carroll, Julie. 2016. “The Less the Better: One Patient’s Journey with VSED.” Narrative Inquiry in Bioethics, 6, no. 2: 78-80.

Ebert, Sandra. 2019. “Fasting to Death: The Sad Story Behind Klaus Grosch's Obituary Notice.” Kölner Stadt-Anzeiger, May 17.

Eddy, David. 1994. “A Conversation with My Mother.” JAMA, 272: 179-181.

Eddy, David. 2005. “I’m Still Telling Others How Well This Worked for My Mother.” In The Best Way to Say Goodbye: A Legal, Peaceful Choice at the End of Life, Stanley A. Terman, ed., 82-84. Carlsbad, CA: Life Transitions.

Eddy, David. 2007. “I’m Still Telling Others How Well This Worked for My Mother.” In Stanley A. Terman, ed., The Best Way to Say Goodbye: A Legal, Peaceful Choice at the End of Life. Carlsbad, CA: Life Transitions.

Evans, Alex. 2012. “Former Magistrate Starved Herself to Death, Supporting Right-to-Die.” Weston Mercury, October 26.

Fayerman, Pamela. 2016. “Margot Bentley Dies, A Finality That Couldn’t Come Too Soon for Anguished Family.” Vancouver Sun, November 11.

Gross, Jane. 2008. “What an End-of-Life Adviser Could Have Told Me.” New York Times, December 15.

Halpern, Scott D. 2020. “Learning about End-of-Life Care from Grandpa.” New England J Med, DOI: 10.1056/NEJMp2026629.

Hensel, William Arthur. 1996. “My Living Will.” JAMA, 275: 588.

Hammond, Katherine. 2016. “Kept Alive – The Enduring Tragedy of Margot Bentley.” Narrative Inquiry in Bioethics, 6, no. 2 (summer): 80-82.

Henig, Robin Marantz. 2015. “Despite Sweeping Aid in Dying Law, Few Will Have that Option.” NPR, October 7.

Hooks, Cody, and Morgan Timms. 2019. “A Remarkable Life, a Chosen Death.” Taos News, February 21.

Horowitz, Robert, Bernard Sussman, and Timothy Quill. 2016. "VSED Narratives: Exploring Complexity." Narrative Inquiry in Bioethics, 6, no. 2: 115-120.

Horowitz, Robert, Bernard Sussman, and Timothy Quill. 2016. "VSED Narratives: Exploring Complexity." Narrative Inquiry in Bioethics, 6, no. 2: 115-120. doi: 10.1353/nib.2016.0028.

Hull, Rhonda. 2020. “Interview with Jim Rough: A Courageous Conversation about V.S.E.D.” Available here.

In My Own Words. 2020. Video Advance Recording Service, Oakland, CA. Available here (accessed June 5, 2020).

Jay, Niver. 2020. “Alzheimer’s: the Torture of Dementia.” Final Exit Network Newsletter, 19, no. 3: 1-2.

Jose, Elizabeth Keller, and William S. Jose. 2016. “VSED at Home with Hospice: A Daughter’s and Husband’s Experience.” Narrative Inquiry in Bioethics, 6, no. 2: 82-88.

Jury, Mark, and Dan Jury. 1978. Gramp. New York: Penguin Books.

Kohlhase, Wendy. 2016. “Voluntary Stopping of Eating and Drinking: A Patient’s Right to Choose or an Act of Suicide?” Narrative Inquiry in Bioethics, 6, no. 2: 88-90.

Laurie, Ann. 2016. “Mom’s VSED Journey.” Narrative Inquiry in Bioethics, 6, no. 2: E1-E4.

Mackintosh, Eliza. 2019. “Teenager’s Death Ignites Debate over Euthanasia.” CNN, June 8.

Margolik, David. 1994. “Judge Says Ailing Man, 85, May Fast to Death.” New York Times, February 3.

Marks, Adam. 2016. “‘I’d Like to Choose my Own Way:’ VSED in the Non–Terminal Patient.” Narrative Inquiry in Bioethics, 6, no. 2: 90-92.

Mehne, Sabine. 2019. I Die as I Want: My Decision to Fast at Death [Ich Sterbe Wie Ich Will Meine Entscheidung zum Sterbefasten]. Munich: Ernst Reinhardt Verlag.

Meier, Cynthia A., and Thuan D. Ong. 2015. "To Feed or Not to Feed? A Case Report and Ethical Analysis of Withholding Food and Drink in a Patient With Advanced Dementia." Journal of Pain and Symptom Management, 50, no. 6: 887-890. doi: 10.1016/j.jpainsymman.2015.07.009.

Menzel, Paul T. "Carpe Diem: The Death of Jeptha Carrell" based on interview of Carrell’s surviving spouse, Demaris Carrell. 2010, updated 2013. Available here and here.

Mitchell, Marilyn. 2016. “Sam’s Final Story.” Narrative Inquiry in Bioethics, 6, no. 2: 92-94.

Montgomery, Lori. 1996. “Starving is Legal Suicide Method.” Detroit Free Press, November 20.

Muller, David. 2012. “Physician-Assisted Death Is Illegal in Most States, So My Patient Made Another Choice.” Health Affairs, 31: 2343-2346.

Ness, Roberta. David’s journey. Unpublished.

Ness, Roberta. Jan Bergman. Unpublished.

Om, Jason. 2011. “Sounds of Summer: Angela's Last Wish.” World Today, January 21. Available here.

Palliacura. “Case Studies.” Available here.

Parth, Christian. 2019. “Deadly Means ‘Only in Extreme Individual Cases.’” Spiegel, July 28.

Span, Paula. 2016. “The VSED Exit: A Way to Speed Up Dying Without Asking Permission.” New York Times, October 21.

PBS. 2016. “Diane Rehm Shares the Painful Story of Her Husband’s Death.” PBS NewsHour, March 3.

Quill, T.E., Menzel, P.T., Pope, T., & Schwarz, J.K. (editors). Voluntarily stopping eating and drinking: A compassionate, widely-available option for hastening death. Oxford University Press; 2021.

Case 1.1, pp. 12-22
Case 1.2, pp. 23-26
Case 1.3, pp. 26-29 (Horowitz)
Case 1.4, pp. 29-33
Case Korean-American with pancreatic cancer. Pp. 49-51
Case 7.4, pp. 145-150

Reagan, P. (private correspondence, 12.9.23), DM.

Reagan, P. (private correspondence, 12.9.23), DG.

Reagan, P. (private correspondence, 12.9.23), ALS case.

Richard, MacDonald. 2020. “Peace and Love: VSED Bests COVID for Neta.” Final Exit Network Newsletter, 19, no. 3: 4-5.

“Rosemary Bowen’s Fast.” Available here.

Schaffer, Susan Elliott, and Schaffer, Janet Malek. 2016. “Life and Death on Her Own Terms.” Narrative Inquiry in Bioethics, 6, no. 2: 96-99.

Scheidt, Rick J. 2017. “Dying Wish.” The Gerontologist, 57: 1001-1003.

Schwarz, Judith K. 2016. “Sarah’s Second Attempt to Stop Eating and Drinking: Success at Last.” Narrative Inquiry in Bioethics, 6, no. 2: 99-101.

Seidman, Carrie. 2014. “The Traveler’s Final Journey.” Available here.

Shacter, Phyllis R. 2016. “Not Here by Choice: My Husband’s Choice About How and When to Die.” Narrative Inquiry in Bioethics, 6, no. 2: 94-96.

Shacter, Phyllis. 2017. Choosing to Die: A Personal Story: Elective Death by Voluntarily Stopping Eating and Drinking (VSED) in the Face of Degenerative Disease. Scotts Valley: Create Space (self-published). Available here.

Stirling, R. 2019. The Guardian, 12.9.23. “‘It’s gone on too long. Push me over the edge’: Diana Rigg’s dying wishes in the grip of cancer.” Available here.

Sturmann, Jan. 2019. “It’s My Right: The Handmade Death of Herta Sturmann.” Available here.

Teiser, Stephen F. 1996. The Ghost Festival in Medieval China. Princeton, NJ: Princeton University Press.

Terman, Stanley A. 2016. “To Live Long Enough to Warm the Hearts of Others: Reflections on Informing my Patient about a Peaceful Way to Die.” Narrative Inquiry in Bioethics, 6, no. 2: 101-105.

Terman, Stanley A. 2007. The Best Way to Say Goodbye: A Legal, Peaceful Choice at the End of Life. Carlsbad, CA: Life Transitions.

Uyttebrouck, Olivier. 2011. “Couple Transported Out of Facility After Refusing Food.” Albuquerque Journal, January 8.

Vetter, Pam. 2008. “Dying Wish Documents Death of Dr. Michael Miller with Conscious Choice to Stop Eating and Drinking.” American Chronicle, July 28.

Webster, Deacon Gregory. 2016. “The Deacon’s Mom Wants to Die.” Narrative Inquiry in Bioethics, 6, no. 2: 105-107.

Western Australia Parliament. 2018. “Inquiry into the Need for Laws in Western Australia to Allow Citizens to Make Informed Decisions Regarding Their Own End of Life Choices.” Available here.

Wolfe, Warren. 1994. “Three Lives, Three Journeys.” Star Tribune, February 27.

Zur Nieden, Christiane, and Hans-Christoph Zur Nieden. 2019. Dealing with Fasting: Practical Cases. Frankfurt: Mabuse-Verlag.

Zur Nieden, Christiane. 2016. Fasting to Death. Voluntary Waiver of Food and Fluids - A Case Description. Frankfurt: Mabuse-Verlag.

Narrative Books

Diane Rehm, On My Own. 2016, Vintage Books

Raymond Smith, Voluntarily Stopping Eating and Drinking: My wife’s ordeal

Marc Newhouse, Cheat the Nursing Home

Phyllis Schacter (see above)

Commentary / Ethics / Law

Alan Meisel, Kenneth Cerminara, and Thaddeus M. Pope. 2020. The Right to Die: The Law of End-of-Life Decisionmaking, 3rd ed. New York: Wolters Kluwer Law & Business. Loose-leaf publication from 2004 with annual supplements.

Beauchamp, Tom L., and James F. Childress. 2001. Principles of Biomedical Ethics, 5th ed. New York: Oxford University Press.

Bentley v. Maplewood Seniors Care Society, 2014 BCSC 165 (Feb. 3, 2014).

Bentley v. Maplewood Seniors Care Society, 2015 BCCA 91 (Mar. 5th, 2015).

Berghmans, Ron. 2000. “Advance Directives and Dementia.” Annals of the New York Academy of Sciences, 913 (January): 105-110.

Bernat, James L., Bernard Gert, and Peter Mogielnicki. 1993. “Patient Refusal of Hydration and Nutrition. An Alternative to Physician-Assisted Suicide or Voluntary Active Euthanasia.” Archives of Internal Medicine, 153, no. 24: 2723-2728.

Block, Susan D., and J. Andrew Billings. “Patient requests to hasten death: Evaluation and management in terminal care.” 1994. Archives of Internal Medicine, 154, no. 18: 2039–2047.

Boyle, Joseph. 2017. “Intention, Permissibility, and the Consistency of Traditional End-of-Life Care,” in Euthanasia and Assisted Suicide: Global Views on Choosing to End Life, edited by Michael J. Cholbi, 255-275. Santa Barbara, CA: Praeger/ABC-CLIO.

Brewer, Colin O. 2019. Let Me Not Get Alzheimer's Sweet Heaven: Why Many People Prefer Death or Active Deliverance to Living with Dementia. Bloxham: Skyscraper Publications.

Cantor, Norman L. 2018. “On Avoiding Deep Dementia.” Hastings Center Report, 48, no. 4.

Cantor, Norman L. 2006. “On Hastening Death Without Violating Legal and Moral Prohibitions.” Loyola University Chicago Law Journal, 37: 101-125.

Cantor, Norman L. 2017. “Changing the Paradigm of Advance Directives to Avoid Prolonged Dementia.” Bill of Health (blog by the Petrie-Flom Center, Harvard Law School, April 20, 2017). Available here.

Casarett, David J., and Timothy E. Quill. 2007. "’I'm Not Ready for Hospice’: Strategies for Timely and Effective Hospice Discussions." Annals of Internal Medicine, 146, no. 6: 443-449. doi: 146/6/443 [pii].

Cassel, Eric J. 1982. "The Nature of Suffering and the Goals of Medicine." N Engl J Med. 306, no. 11: 639-645.

Cavanagh, Maureen. 2014. “How Should a Catholic Hospice Respond to Patients Who Choose to Voluntarily Stop Eating and Drinking in Order to Hasten Death?” Linacre Quarterly, 81, no. 3 (August): 279–285.

Chabot, Boudewijn, and Christian Walther. 2017. Way Out at the End of Life: Death Fasting - Self-Determined Death by Refraining from Eating and Drinking [Ausweg am Lebensende: Sterbefasten - Selbstbestimmtes Sterben durch Verzicht auf Essen und Trinken]. Munich: Reinhardt Ernst.

Chabot, Boudewijn. 2008. A Hastened Death by Self-Denial of Food and Drink. Amsterdam: Chabot.

Chabot, Boudewijn. 2011. “Informationen zum freiwilligen Verzicht auf Nahrung und Flüssigkeit: Was zu tun ist.” In: Ausweg am Lebensende: Selbstbestimmt sterben durch freiwilligen Verzicht auf Essen und Trinken. Chabot, B., Walther, C., editors. 2nd ed. München: Reinhardt.

Chabot, Boudewijn. 2015. Stopping Eating and Drinking a Guide. Amsterdam: self-published.

Chabot, Boudewin E. 2007. Auto-Euthanasie. Verborgen Stervenswegen In Gesprek Met Naasten. Amsterdam: Uitgeverij Bert Bakker.

Cherny, Nathan I., and Russel K. Portenoy. 1994. "Sedation in the management of refractory symptoms: guidelines for evaluation and treatment." J Palliat Care, 10, no. 2: 31-38.

Cochrane, Thomas I., and Robert D. Truog. 2005. “Refusal of Hydration and Nutrition: Irrelevance of the ‘Artificial’ vs ‘Natural’ Distinction.” Archives Internal Med., 165, no. 22: 2574-2576.

Friesen, Phoebe. 2020. “Medically Assisted Dying and Suicide: How Are They Different and How Are they Similar?” Hastings Center Report, 50, no 1 (January-February): 32-43. DOI-10.1002/hast.1083.

Gallagher, J. 1984. “Health Facilities' Obligations when a Patient Refuses Treatment.” Health Progress, 65, no. 8: 40-43.

Gruenewald, David A. 2018. “Voluntarily Stopping Eating and Drinking: A Practical Approach for Long-Term Care Facilities.” Journal of Palliative Medicine, 21, no. 9: 1214-1220.

Harvard Community Ethics Committee. 2016. “Palliated and Assisted Voluntary Stopping of Eating and Drinking.” Available here.

Jaggard, Peter, and James Wright. “Stopping Eating and Drinking by Advance Directives: Choose Your Injustice.” Caring for the Ages (April 2019): 12-13.

Jansen, Lynn A. 2004. “No Safe Harbor: the Principle of Complicity and the Practice of Voluntary Stopping of Eating and Drinking.” Journal of Medicine and Philosophy, 29, no. 1: 61-74.

Jansen, Lynn A., and Daniel P. Sulmasy. 2002. “Sedation, Alimentation, Hydration, and Equivocation: Careful Conversation about Care at the End of Life.” Annals of Internal Medicine, 136, no. 11 (June): 845-849.

Jox, Ralf J., Isra Black, Gian Domenico Borasio, and Johanna Anneser. 2017. “Voluntary Stopping of Eating and Drinking: Is Medical Support Ethically Justified?” BMC Medicine, 15: 186-190. DOI 10.1186/s12916-017-0950-1.

Mader, Sarah, and Victoria Apold. 2020. “VSED as an Alternative to MAiD: A Pan-Canadian Legal Analysis.” Available here.

McCann, Robert M., William J. Hall, and Ann-Marie Groth-Juncker. 1994. "Comfort Care for Terminally Ill Patients. The Appropriate Use of Nutrition and Hydration." JAMA, 272, no. 16: 1263-1266.

Meisel, Alan, Kathy L. Cerminara, and Thaddeus M. Pope. 2020. The Right to Die: The Law of End-of-Life Decisionmaking. New York: Wolters Kluwer.

Meisel, Alan. 1995. “Barriers to Forgoing Nutrition and Hydration in Nursing Homes.” American Journal of Law and Medicine, 21: 335-382.

Menzel, Paul T. 2013. “Advance Directives, Dementia, and Eligibility for Physician-Assisted Death.” New York Law School Law Review, 58, no. 2 (): 321-345.

Menzel, Paul T. 2017. “Change of Mind: An Issue for Advance Directives,” in John K. Davis, ed., Ethics at the End of Life: New Issues and Arguments. New York: Routledge, pp. 126-137.

Menzel, Paul T. 2017. “Three Barriers to VSED by Advance Directive: A Critical Assessment.” Seattle Journal for Social Justice, 15, no. 3: 673-700. Available here.

Menzel, Paul T. 2017. “Voluntarily Stopping Eating and Drinking: A Normative Comparison with Refusing Life-saving Treatment and Advance Directives.” Journal of Law, Medicine & Ethics, 45. No. 4 (winter): 634-646.

Menzel, Paul T. 2019. “Justifying a Surrogate’s Request to Forego Oral Feeding.” Am J Bioethics, 19, no. 1: 92-94.

Menzel, Paul T., and M. Colette Chandler-Cramer. 2014. “Advance Directives, Dementia, and Withholding Food and Water by Mouth.” Hastings Center Report, 44, no. 3 (May-June): 23-37.

Miller, Franklin G., and Diane E. Meier. 1998. “Voluntary Death: A Comparison of Terminal Dehydration and Physician-Assisted Suicide.” Annals of Internal Medicine, 128: 559-562.

O’Rourke, Kevin D. 2005. “The Catholic Tradition on Forgoing Life Support.” The National Catholic Bioethics Quarterly, 5, no. 3 (autumn): 537-553. DOI: 10.5840/ncbq20055332.

Palecek, Eric J., Joan M. Teno, David J. Casarett, Laura C. Hanson, Ramona L. Rhodes, and Susan L. Mitchell. 2010. “Comfort Feeding Only: A Proposal to Bring Clarity to Decision-making Regarding Difficulty with Eating for Persons with Advanced Dementia.” Journal of the American Geriatric Society, 58: 580-584. Available here.

Pflege Durch Angehorige. 2019. “Fasting to Death - Supplement to the Living Will.” Available here.

Pope, Thaddeus M., and Amanda West. 2014. “Legal Briefing: Voluntarily Stopping Eating and Drinking.” J Clin Ethics, 25, no. 1: 68-80.

Pope, Thaddeus M. 2019. “Whether, When, and How to Honor Advance VSED Requests for End-Stage Dementia Patients.” Am J Bioethics, 19, no. 1: 90-92.

Pope, Thaddeus M. 2015. “Prospective Autonomy and Dementia: Ulysses Contracts for VSED.” Journal of Bioethical Inquiry, 12, no. 3: 389-394. DOI 10.1007/s11673-015-9652-6.

Pope, Thaddeus M. 2015. “Prospective Autonomy and Ulysses Contracts for VSED.” One of two sections of Thaddeus M. Pope and Bernadette J. Richards “Decision-Making: At the End of Life and the Provision of Pretreatment Advice.” Journal of Bioethical Inquiry, 12, no. 3 (September): 389-394. DOI 10.1007/s11673-015-9652-6.

Pope, Thaddeus M. 2018. “Law and Ethics in Oncology: Voluntarily Stopping Eating and Drinking Is a Legal and Ethical Exit Option.” ASCO Post, June 25.

Pope, Thaddeus M. 2019. “Avoiding Late-Stage Dementia with Advance Directives for Stopping Eating and Drinking.” KevinMD, October 6.

Pope, Thaddeus M. 2019. “Whether, When, and How to Honor Advance VSED Requests for End-Stage Dementia Patients.” American Journal of Bioethics, 19, no 1: 90-92.

Pope, Thaddeus M., and Amanda West. 2014. “Legal Briefing: Voluntarily Stopping Eating and Drinking.” Journal of Clinical Ethics, 25, no. 1: 68-80.

Pope, Thaddeus M., and Lindsey Anderson. 2011. “Voluntarily Stopping Eating and Drinking: A Legal Treatment Option at the End of Life.” Widener Law Review, 17, no. 2: 363-428.

Quill, Timothy E., Linda Ganzini, Robert D. Troug, Thaddeus M. Pope. 2018. "Voluntarily Stopping Eating and Drinking: Clinical, Ethical, and Legal Aspects." JAMA Intern Med, 178, no. 1: 123-127.

Quill, Timothy E., and Ira R. Byock. 2000. “Responding to Intractable Terminal Suffering: The Role of Terminal Sedation and Voluntary Refusal of Food and Fluids.” Annals of Internal Medicine, 13, no. 5: 408–414.

Quill, Timothy E. 2000. "Initiating End-of-Life Discussions with Seriously Ill Patients: Addressing the ‘Elephant in the Room’." JAMA, 284, no. 19: 2502-2507. doi:10.1001/jama.284.19.2502.

Quill, Timothy E., and Margaret P. Battin. 2020. “Physician Assisted Death: Understanding, Evaluating, and Responding to Requests for Medical Aid In Dying.” UpToDate (website), Robert M. Arnold, section editor. Available here.

Quill, Timothy E., and Amy P. Abernethy. 2013. "Generalist Plus Specialist Palliative Care--Creating a More Sustainable Model." New England Journal of Medicine, 368, no. 13: 1173-1175.

Quill, Timothy E., Bernard Lo, and Dan W. Brock. 1997. "Palliative Options of Last Resort: a Comparison of Voluntarily Stopping Eating and Drinking, Terminal Sedation, Physician-Assisted Suicide, and Voluntary Active Euthanasia." JAMA, 278, no. 23: 2099-2104.

Quill, Timothy E., Linda Ganzini, Robert D. Truog, and Thaddeus M. Pope. 2018. "Voluntarily Stopping Eating and Drinking Among Patients With Serious Advanced Illness-Clinical, Ethical, and Legal Aspects." JAMA Intern Med, 178, no. 1: 123-127. doi: 10.1001/jamainternmed.2017.6307.

Quill, Timothy E., Periyakoil, Vyjeyanthi J., Erin Denney-Koelsch, Patrick White, and Donna Zhurhovsky. 2019. Primer of Palliative Care, 7th Edition. Chicago, IL: American Academy of Hospice and Palliative Medicine.

Radbruch, Lukas, and Liliana De Lima. 2017. “Response Regarding Voluntary Cessation of Food and Water.” Journal of Palliative Medicine, 20: 578-579.

Savulescu, Julian. 2014. “A Simple Solution to the Puzzles of End of Life? Voluntary Palliated Starvation.” Journal of Medical Ethics, 40: 110-113.

Schwarz, Judith K. 2011. “Death by Voluntary Dehydration: Suicide or the Right to Refuse a Life-Prolonging Measure?” Widener Law Review, 17, no. 2: 351-361.

Schwarz, Judith K. 2019. “Lessons From New York’s Dementia Directive and Applications to Withholding Oral Feedings.” American Journal of Bioethics, 19, no. 1: 95-97.

Schwarz, Judith K. 2007. "Exploring the Option of Voluntarily Stopping Eating and Drinking Within the Context of a Suffering Patient's Request For a Hastened Death." Journal of Palliative Medicine, 10, no. 6: 1288-1297.

Silver, Mara. 2005. “Testing Cruzan: Prisoners and the Constitutional Question of Self-Starvation.” Stanford Law Review, 58: 631-662.

Sullivan, Robert J. 1993. “Accepting Death without Artificial Nutrition or Hydration.” Journal of General Internal Medicine, 8: 220-223.

Symposium. 2016. “Voluntarily Stopping Eating and Drinking.” Narrative Inquiry on Bioethics, 6, no. 2: 75-126.

Terman, Stanley.A. 2007. The Best Way to Say Goodbye: A Legal, Peaceful Choice at the End of Life. Carlsbad, CA: Life Transitions Publications.

Volicer, Ladislav, Thaddeus Mason Pope, and Karl E. Steinberg. 2019. “Assistance with Eating and Drinking Only When Requested Can Prevent Living with Advanced Dementia.” JAMDA, 20, no. 11: 1353-1355.

Wax, John W., Amy W. An, Nicole Kosier, and Timothy E. Quill. 2018. “Voluntary Stopping Eating and Drinking.” Journal of the American Geriatrics Society, 66, no. 3: 441–445.

White, Benjamin P., Lindy Willmott, and Julian Savulescu. 2014. “Voluntary Palliated Starvation: A Lawful and Ethical Way to Die?” Journal of Law and Medicine, 22: 375-386.

Position Papers

AMDA – The Society for Post-Acute and Long-Term Care Medicine. 2019. “Ethics Committee White Paper: Stopping eating and drinking by advance directives (SED by AD) in the ALF and PALTC setting” (April 2019). Available here.

AMDA – The Society for Post-Acute and Long-Term Care Medicine. 2019. “Ethics Committee White Paper: Stopping Eating and Drinking by Advance Directives (SED by AD) in the ALF and PALTC Setting.” Available here. Accessed December 13, 2019.

American Academy of Hospice and Palliative Medicine (AAHPM). 2016. “Advisory Brief: Guidance on Responding to Requests for Physician-Assisted Dying.” Available here.

American Association of Suicidology. 2017. “Statement of the American Association of Suicidology: ‘Suicide’ Is Not the Same as ‘Physician Aid in Dying,’” approved October 30, 2017. Available here.

American Bar Association. 2017. “State Statutory Provisions Related to Orally Provided Food and Fluids and Comfort Care” (July 2017). Available here. Accessed December 3, 2019.

American Medical Women’s Association. 2018. “Position Statement on Medical Aid in Dying.” Available here.

American Nurses Association. 2017. “Position Statement: Nutrition and Hydration at the End of Life.” Available here.

ANA Center for Ethics and Human Rights. 2017. “Revised Position Statement: Nutrition and Hydration at the End of Life.” Available here.

Baracos, Vickie E. 2017. “International Association for Hospice and Palliative Care Endorses Volitional Death by Starvation and Dehydration.” Journal of Palliative Medicine, 20: 577.

Benton Hospice Service [now Lumina Hospice & Palliative Care in Corvallis, Oregon]. 2015. “Voluntarily Stopping Eating and Drinking (VSED) Policy.”

Cipriano, Pamela F. 2018. “ANA responds to the HHS announcement of the New Conscience and Religious Freedom Division” (January 18, 2018). Available here. Accessed May 15, 2020.

Druml, Christiane, Peter E. Ballmer, Wilfred Druml, Frank Oehmichen, Alan Shenkin, Pierre Singer, Peter Soeters, Arved Weimann, and Stephan C. Bischoff. 2016. “ESPEN Guideline on Ethical Aspects of Artificial Nutrition and Hydration.” Clinical Nutrition, 35, no. 3: 545-556. (European Society for Clinical Nutrition and Metabolism supports VSED).

Lachman, V.D. Voluntary stopping of eating and drinking: An ethical alternative to physician-assisted suicide. Medsurg nursing. 2015 Jan 1;24(1):56-60. (Background to ANA 2017 position).

KNMG (Royal Dutch Medical Association) and V&VN (Dutch Nurses Association). 2014. Caring for people who consciously choose not to eat and drink so as to hasten the end of life. Available here. Accessed December 3, 2019.

KNMG (Koninklijke Nederlandsche Maatschappij tot bevordering der Geneeskunst) [Royal Dutch Medical Association]. 2011. “The Role of the Physician in the Voluntary Termination of Life.” Available here.

Danis, M. Up-to-date 2023. Stopping hydration and nutrition at the end of life. Stopping nutrition and hydration at the end of life (medilib.ir). Accessed December 2, 2023. (written by NIH author).

Royal Dutch Medical Association (KNMG) and Dutch Nurses’ Association (V&VN). 2014. “Caring for People Who Consciously Choose Not to Eat and Drink So as to Hasten the End of Life.” Available here.

Royal Dutch Medical Association [Koninklijke Nederlandsche Maatschappij tot bevordering der Geneeskunst (KNMG)]. “The Role of the Physician in the Voluntary Termination of Life.” 2011. Available here.

U.S. Bishops’ Pro-Life Committee. 1992. “Nutrition and Hydration: Moral and Pastoral Reflections.” Washington, DC: U.S. Catholic Conference Inc. Reprinted in Steinbock et al., 2013, 391-397.

United States Conference of Catholic Bishops. 2009. “Ethical and Religious Directives for Catholic Health Care Services (5th edition).” Available here.

Wright, James L., Peter M. Jaggard, Timothy Holahan, and Ethics Subcommittee of AMDA. 2019. “Stopping Eating and Drinking by Advance Directives (SED by AD) in Assisted Living and Nursing Homes.” JAMDA, 29: 1362-1366.

Empiric

Batzler, YN, Schallenburger, M, Maletzki, P, Tenge, T, Schlieper, D, Schwartz, J, Neukirchen, M. Caring for patients during voluntarily stopping of eating and drinking (VSED): experiences of a palliative care team in Germany. BMC palliative care. 2023 Dec;22(1):1-8. (German single hospital experience with difficulties experienced by patients undertaking VSED).

Bolt, Eva E., Martijn Hagens, Dick Willems, and Bregie D. Onwuteaka-Philipsen. 2015. “Primary Care Patients Hastening Death by Voluntarily Stopping Eating and Drinking.” Annals Family Medicine, 13, no. 5: 421-428.

Bolt, EE, Pasman, HR, Onwuteaka-Philipsen, BD. Patients Who Seek to Hasten Death by Voluntarily Stopping Eating and Drinking: A Qualitative Study. The Annals of Family Medicine. 2023 Nov 1;21(6):534-44. (Netherlands small study of range of patients undertaking VSED, preparation, and support).

Chabot, Boudewijn E., and Arnold Goedhart. 2009. “A Survey of Self-directed Dying Attended by Proxies in the Dutch Population.” Social Science and Medicine, 68, no. 10: 1745–1751.

Ganzini, Linda, Elizabeth R. Goy, and Steven K. Dobscha. 2008. "Prevalence of Depression and Anxiety in Patients Requesting Physicians' Aid in Dying: Cross Sectional Survey." BMJ, 337: 1682. doi: 10.1136/bmj.a1682.

Ganzini, Linda, Elizabeth R. Goy, and Steven K. Dobscha. 2009. "Oregonians' Reasons for Requesting Physician Aid in Dying." Archives of Internal Med, 169, no. 5: 489-492. doi: 10.1001/archinternmed.2008.579.

Ganzini, Linda, Elizabeth R. Goy, Lois L. Miller, Theresa A. Harvath, Ann Jackson, and Molly A. Delorit. 2003. "Nurses' Experiences With Hospice Patients Who Refuse Food and Fluids to Hasten Death." New England Journal of Medicine, 349, no. 4: 359-365. doi: 10.1056/NEJMsa035086.

Hagens, M., Pasman, HRW, van der Heide, A., Onwuteaka-Philipsen, BD. Intentionally ending one's own life in the presence or absence of a medical condition: A nationwide mortality follow-back study. SSM Popul Health. 2021 Jul 15;15:100871. doi: 10.1016/j.ssmph.2021.100871. PMID: 34337130; PMCID: PMC8318894.

Harvath, Theresa A., Lois L. Miller, Elizabeth Goy, Ann Jackson, Molly Delorit, and Linda Ganzini. 2004. “Voluntary Refusal of Food and Fluids: Attitudes of Oregon Hospice Nurses and Social Workers.” International Journal of Palliative Nursing, 10: 236-241.

Hoffman, David N., Gianna R. Strand, Rachel F. Bloom, and Katherine Henley. Understanding resistance to honoring VSED advance directives in dementia patients: a cross sectional study. J Gerontol Geriatric Med, 9:192. 2023 (survey of long-term care directors about policies/attitudes/experiences with VSED).

Hoekstra, Nina Luisa, and Alfred Simon. 2019. “Empirical Data on Voluntary Waiver of Food and Liquid.” In Voluntary Waiver of Food and Fluids, Medical and Nursing Basics - Ethical and Legal Assessments, Eds. Michael Coors, Bernd Alt-epping, and Alfred Simon. Stuttgart: Kohlhammer.

Hoekstra, Nina Luisa, M. Strack, and A. Simonet. 2015. “Physicians' Attitudes on Voluntary Refusal of Food and Fluids to Hasten Death - Results of an Empirical Study Among 255 Physicians.” Zeitschrift für Palliativmedizin, 16, no 2: 68–73.

Ivanovic, Natasa, Daniel Buche, and Andre Fringer. 2014. "Voluntary Stopping of Eating and Drinking at the End of Life - a 'Systematic Search and Review' Giving Insight Into an Option of Hastening Death in Capacitated Adults at the End of Life." BMC Palliat Care, 13, no. 1: 1. doi: 10.1186/1472-684x-13-1.

Lowers, Jane. 2020. Caring for Someone Who Has Chosen to Stop Eating and Drinking to Hasten Death, Lancaster University. Doctoral dissertation. Available here.

My Death, My Decision (UK). Opinion Poll on MAID and Alzheimers. Available here.

Shinjo, Takuya, Tatsuya Morita, Daisuke Kiuchi, Masayuki Ikenaga, Hirofumi Abo, Sayaka Maeda, Satoru Tsuneto, and Yoshiyuki Kizawa. 2019. “Japanese Physicians’ Experiences of Terminally Ill Patients Voluntarily Stopping Eating and Drinking: A National Survey.” BMJ Supportive Palliative Care, 9, no. 2: 143-145.

Stängle, S., Schnepp, W., Mezger, M., Büche, D., Fringer, A. 2019. Development of a Questionnaire to Determine Incidence and Attitudes to "Voluntary Stopping of Eating and Drinking". SAGE Open Nurs. 2019 Jan 8;5:2377960818812356.

Stängle, S., Büche, D., Häuptle, C., Fringer, A. 2021. Experiences, personal attitudes, and professional stances of Swiss health care professionals toward voluntary stopping of eating and drinking to hasten death: a cross-sectional study. Journal of pain and symptom management. 2021 Feb 1;61(2):270-8.

Stängle, S., Fringer, A. 2021. Perspectives of people accompanying a person during voluntary stopping eating and drinking: a convergent mixed methods study. Annals of Palliative Medicine. 2021;10(1).

Stängle, Sabrina, Schnepp, Wukfried, and Fringer, Andre. 2019. “The need to distinguish between different forms of oral nutrition refusal and different forms of voluntary stopping of eating and drinking." Palliat Care & Social Practice, 13:1-7.

Stängle, Sabrina, Wilfried Schnepp, Daniel Büche, Christian Häuptle, and André Fringer. 2020. “Family Physicians’ Perspective on Voluntary Stopping of Eating and Drinking: A Cross-Sectional Study.” Journal of International Medical Research, forthcoming.

Stängle, Sabrina, Wilfried Schnepp, Daniel Büche, Christian Häuptle, and André Fringer. 2020. “Long-term Care Nurses' Attitudes and the Incidence of Voluntary Stopping of Eating and Drinking: A Cross-Sectional Study.” Journal of Advanced Nursing, 76, no. 2: 526-533.

Tools

Dartmouth Dementia Directive. Available here (AD document that includes VSED for patients with dementia).

End of Life Choices New York. 2020. “Advance Directive for Receiving Oral Food and Fluids in Dementia.” Available here.

Terman, Stanley A. 2019. My Way Cards © 2009 – 2019. Carlsbad, CA: Life Transitions Publications. Now Care Planning (guide to convincing physicians to support VSED for incompetent/demented patients based on surrogate decision).

Visiting Nurse Service of New York. 2017. “VSED: Responding to a Patient’s Desire to Voluntarily Stop Eating and Drinking.” (clinical pathway).

Foreign (Non-U.S.)

Abohaimed, Shaikhah, Salah Basma, Matar Hussain, Al-Shimali Khalid, Al-Thalji Omar, Al-Othman Yasmin, Zurba Nasra Shah. 2019. “Attitudes of physicians towards different types of euthanasia in Kuwait.” Medical Principles and Practice, 28: 199–207.

Alzheimer’s Australia. 2014. End of Life Care for People with Dementia. Available here.

Australian National Health and Medical Research Council. 2006. “Guidelines for a Palliative Approach in Residential Aged Care.” Available here.

Birnbacher, Dieter. 2015. “Ist Sterbefasten eine Form von Suizid?” Ethik in der Medizin, 27, no. 4 (December). DOI 10.1007/s00481-015-0337-9. Unpublished English version from the author: “Is Voluntarily Stopping Eating and Drinking a Form of Suicide?”

Braun, Whitney. 2008. “Sallekhana: the Ethicality and Legality of Religious Suicide by Starvation in the Jain Religious Community.” Med Law. 27, no. 4: 913-924. PMID: 19202863.

Campaign for Dignity in Dying. 2019. The Inescapable Truth. Available here.

Canada Department of Justice. 2016. “Legislative Background: Medical Assistance in Dying.” Available here.

China Daily. 2004. "Zhongyua Festival - Hungry Ghost Festival." China Daily, August 30, 2004 (retrieved October 20, 2008).

Coors, Michael, Bernd Alt-epping, and Alfred Simon. 2019. Voluntary Waiver of Food and Fluids Medical and Nursing Basics - Ethical and Legal Assessments [Freiwilliger Verzicht auf Nahrung und Flüssigkeit]. Stuttgart: Kohlhammer.

Feichtner, Angelika, Dietmar Weixler, and Alois Birklbauer. 2018. “Voluntary Refraining from Food and Fluids to Accelerate Death: A Statement from the Austrian Palliative Society (OPG) [Freiwilliger Verzicht auf Nahrung und Flüssigkeit, um das Sterben zu beschleunigen: Eine Stellungnahme der österreichischen Palliativgesellschaft (OPG)].” Vienna Medical Weekly [Wiener Medizinische Wochenschrift], 168: 168-176.

Joychen, P.J. 2015. “Jain Practice of Santhara Illegal: Rajasthan HC.” Times of India, August 11. Available here.

Kaufmann, Peter, Fringer A., Trachsel M., Stängle S., Meichlinger J., & Walther C. 2020. Sterbefasten - 25 Fallbeispiele zur Diskussion über den freiwilligen Verzicht auf Nahrung und Flüssigkeit (FVNF). Stuttgart: Kohlhammer.

Kaufmann, Peter, Manuel Trachsel, and Christian Walther. 2020. Sterbefasten: Fallbeispiele Zur Diskussion Uber Den Freiwilligen Verzicht Auf Nahrung Und Flussigkeit. Stuttgart: Kohlhammer.

Trowse, Phillippa. 2020. “Voluntary Stopping of Eating and Drinking in Advance Directives for Adults with Late‐Stage Dementia.” Australasian Journal on Aging. Available here.

Other

Ahluwalia, Indu B., Janice M. Dodds, and Magda Baligh. 1998. “Social Support and Coping Behaviors of Low-Income Families Experiencing Food Insufficiency in North Carolina.” Health Education and Behavior, 25, no. 5: 599-612.

Ayala, Guadalupe X., Barbara Baquero, and Sylvia Klinger. 2008. “A Systematic Review of the Relationship Between Acculturation and Diet Among Latinos in the United States: Implications for Future Research.” Journal of the American Dietetic Association, 108, no. 8: 1330–1344.

Bangerter, Lauren R., Allison R. Heid, Katherin Abbott, and Kimberly Van Haitsma. 2017. “Honoring the everyday preferences of nursing home residents: Perceived choice and satisfaction with care.” Gerontologist, 5, no. 3: 479–486.

Centers for Medicare & Medicaid Services (CMS). 2019. “Long-Term Care Facility Resident Assessment Instrument, 3.0, Version 1.17.1.” October 2019 (online). Available here. Accessed May 15, 2020.

Centers for Medicare & Medicaid Services (CMS). 2017. “State Operations Manual, Appendix PP - Guidance to Surveyors for Long Term Care Facilities (Rev. 173, 11-22-17).” Available here. Accessed May 2020.

Chilton, Mariana, and Sue Booth. 2007. “Hunger of the Body and Hunger of the Mind: African American Women’s Perceptions of Food Insecurity, Health, and Violence.” Journal of Nutrition, Education, and Behavior, 39, no. 3: 116–125.

Diez-Manglano, Jesus, Soledad I. de Isasmendi Perez, Rosa G. Fenoll, Luis A. Sanchez, Francesc Formiga, Vincente G. Galvan, Carlos Duenas, Bernardino R. Villanueva, Cristina E. Diaz, and Emilio C. Vales. 2020. "Palliative Sedation in Patients Hospitalized in Internal Medicine Departments." Journal of Pain and Symptom and Management, 59, no. 2: 302-309. doi: 10.1016/j.jpainsymman.2019.10.013. (Empiric study – survey – of use of palliative sedation, not VSED.)

Dubowitz, Tamara, Shannon N. Zenk, Bonnie Ghosh-Dastidar, Deborah A. Cohen, Robin Beckman, Gerald Hunter, Elizabeth D. Steiner, and Rebacca L. Collins. 2015. “Healthy Food Access for Urban Food Desert Residents: Examination of the Food Environment, Food Purchasing Practices, Diet and BMI.” Public Health Nutrition, 18, no. 12: 2220-2230.

Emmerich, Nathan, and Bert Gordijn. 2019. "Ethics of Crisis Sedation: Questions of Performance and Consent." Journal of Medical Ethics, 45, no. 5: 339-345. doi: 10.1136/medethics-2018-105285.

Lo, Bernard, and Gordon Rubenfeld. 2005. "Palliative Sedation in Dying Patients: 'We turn to it when everything else hasn't worked'." JAMA, 294, no. 14: 1810-1816. doi:10.1001/jama.294.14.1810.

Olson, Christine M. 1999. “Nutrition and Health Outcomes Associated with Food Insecurity and Hunger.” Journal of Nutrition, 129, no. 2: 521S–524S.

Khemā Danielle Eernisse