Why is tube feeding so common . . .
- if forgoing food and fluids at the end of life is an ethically sound choice?
- if forgoing food and fluids at the end of life is a legally protected option?
- if forgoing food and fluids at the end of life is not painful, and may even provide for a more comfortable death?
- if forgoing food and fluids at the end of life allows family members and friends the opportunity to
(1) help provide comfort care, and
(2) be there with the patient at the time of death?
- if forgoing food and fluids at the end of life . . .
- is accepted as a legitimate option within most religious faith traditions in the U.S.?
ANSWERS: There are a number of reasons why tube feeding is so common, but the most important answer is that many care givers, patients, and family members lack accurate information. Physicians may not offer the option and patients or their family members may not ask about the option because neither know that forging food and fluids is a legitimate option at the end of life. In addition. . .
Physicians
- Physicians may be unaware of the stances taken by medical organizations on this issue (see AMA and the American College of Physician positions).
- The idea of withholding or withdrawing tube feeding may run counter to the "healer" identity many physicians assume. Tube feeding is relatively inexpensive and common, and it may prolong life (at least in a biological sense), so why not do it?
- Physicians may also be reluctant to offer the forgoing of food and fluids as an option out of fear: Fear that the patient or family members will lose faith in her; Fear his colleagues will disapprove; Fear that the death will be painful and difficult to manage from a clinical standpoint, and: Fear of potential legal liability if someone challenges a decision to forgo tube feeding some time down the road. (No doctors have ever been successfully prosecuted under this scenario, but the fear of prosecution has a chilling effect on physician behavior, nonetheless.)
Nursing home administrators and caregivers
- Federal and state laws and their supporting regulations only require that caregivers make a good faith effort to provide patients with adequate nutrition and hydration. Patients are certainly not required by law or regulation to accept and consume the sustenance provided. Nor is there a requirement that nursing homes force feed patients who decline food and fluids.
- It is also true that some nursing homes decline to offer the option of forgoing artificially provided nutrition and hydration because they benefit financially from continuing it.
Family members
Food and drink play an important role in our culture, making it difficult to even contemplate forgoing its provision on behalf of a loved one. This is the case even if the family member making the decision is fairly sure this is what the patient would want, and even when the family member making the decision would not want to be tube fed in a similar situation.
CONCLUSION: Decisions about forgoing food and fluids at the end of life are important, and should not be made lightly. Neither should they be made without relevant and accurate information. Please make use of the information you find on this site to help you make a thoughtful and informed choice about tube feeding at the end of life for yourself and those who depend on you to do what's best.
Citations
Billings, J. Andrew. 1985. "Comfort Measures for the Terminally Ill: Is Dehydration Painful?" Journal of the American Geriatric Society. Vol. 33, pp. 808-810.
Brody, Jane E. 2002. "Facing Up to the Inevitable, in Search of a Good Death," The New York Times, December 31.
Collaud, Thierry and Rapin, Charles-Henri. 1991. "Dehydration in Dying Patients: Study with Physicians in French-Speaking Switzerland," Journal of Pain and Symptom Management. Vol. 6, pp. 230-240.
Ely, John W., Peters, Philip G., Zweig, Steven, Elder, Nancy, and Schneider, F. David. 1992. "The Physicians’ Decisions To Use Tube Feedings: The Role of the Family, the Living Will, and the Cruzan Decision," Journal of the American Geriatric Association. Vol. 40, pp. 471 475.
Hodges, Marian O, Tolle, Susan W., Stocking, Carol, and Cassel, Christine K. 1994. "Tube Feeding. Internists’ Attitudes Regarding Ethical Obligations," Archives of Internal Medicine. Vol. 154, pp. 1013-1020.
Lindgren, James. 1993. "Death by Default," Law and Contemporary Problems. Vol. 56, pp. 186-254.
Lynn, Joanne. 1989a. "Must Patients Always be given Food and Water?." In Joanne Lynn, ed., By No Extraordinary Means: The Choice to Forgo Life-Sustaining Food and Water. Bloomington, Ind.: University Press, pp. 47-60.
McCann, Robert M., Hall, William J., and Grath-Junker, Annmarie. 1994. "Comfort Care for Terminally Ill Patients: The Appropriate Use of Nutrition andHydration," Journal of the American Medical Association. Vol. 272, pp. 1263-6.
Meisel, Alan. 1991. "Legal Myths About Terminating Life Support," Archives of Internal Medicine. Vol. 151, pp. 1497-1502.
New York State Task Force on Life and the Law (NYSTFLL). 1992. When Others Must Choose: Deciding for Patients Without Capacity. New York: NYSTFLL.
Office of Technology Assessment (OTA). 1987. Losing a Million Minds:Confronting the Tragedy of Alzheimer’s Disease and Other Dementias. Washington, DC: U.S. Government Printing Office, July.
Pitorak, Elizabeth Ford. 2003. "Care at the Time of Death," American Journal of Nursing. Vo. 103 (7): 42-53.
Siegler, Mark and Shiedermayer, David L. 1987. "Should Fluid and Nutritional Support Be Withheld from Terminally Ill Patients?: Tube Feeding in Hospice Settings," The American Journal of Hospice Care. Vol. 4, pp. 32-35.
Solomon, Mildred Z., et al. 1993. "Decisions near the End of Life: Professional Views on Life-Sustaining Treatments," American Journal of Public Health. Vol. 83, pp. 14-25.
Sutcliffe, Jayne. 1994. "Palliative care: Terminal dehydration," Nursing Times, Vol. 90, pp. 60-3.
