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Forgoing Medically Provided Nutrition and Hydration in Pediatric Patients

Published online by Cambridge University Press:  01 January 2021

Lawrence J. Nelson ,
Cindy Hylton Rushton ,
Ronald E. Cranford ,
Robert M. Nelson ,
Jacqueline J. Glover  and
Robert D. Truog
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Extract

Discussion of the ethics of forgoing medically provided nutrition and hydration tends to focus on adults rather than infants and children. Many appellate court decisions address the legal propriety of forgoing medically provided nutritional support of adults, but only a few have ruled on pediatric cases that pose the same issue.

The cessation of nutritional support is implemented most commonly for patients in a permanent vegetative state (often referred to as persistent vegetative state (hereinafter “PVS”)). An estimated 4,000 to 10,000 American children are in the permanent vegetative state, compared to 10,000 to 25,000 adults. Yet the dearth of literature, case reports, and court decisions suggests that physicians and families of pediatric patients stop medically provided nutrition or seek court orders much less frequently.

Type
Article
Information
Journal of Law, Medicine & Ethics , Volume 23 , Issue 1 , Spring 1995 , pp. 33 - 46
Copyright
Copyright © American Society of Law, Medicine and Ethics 1995

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References

Childress, James F., “When Is It Morally Justifiable to Discontinue Medical Nutrition and Hydration?,” in Lynn, L., ed., By No Extraordinary Means (Bloomington: Indiana University Press, 1986), pp. 67–83; Brody, Baruch A., “Ethical Questions Raised by the Persistent Vegetative Patient,” Hastings Center Report, 18 (1988): 33-37; Hodges, M.O. et al., “Tube Feeding: Internists’ Attitudes Regarding Ethical Obligations,” Archives of Internal Medicine, 154 (1994): 1013-20; Steinbrock, R. Lo, B., “Artificial Feeding—Solid Ground, Not a Slippery Slope,” N Engl. J. Med., 318 (1988): 286-90; Weir, R.F., Abating Treatment with Critically Ill Patients (New York: Oxford University Press, 1989), pp. 409-16; and Lo, B. Dornbrand, L., “Guiding the Hand that Feeds: Caring for the Demented Elderly,” N. Engl. J. Med., 311 (1984): 402-04.Google Scholar
Paris, John J. Fletcher, Anne B., “Infant Doe Regulations and the Absolute Requirement to Use Nourishment and Fluids for the Dying Infant,” Law, Medicine & Health Care, 11 (1983): 210–13; Frader, Joel, “Forgoing Life-Sustaining Food and Water: Newborns,” in Lynn, J., ed., By No Extraordinary Means (Bloomington: Indiana University Press, 1986), pp. 180-85; and Coulter, David L., “Is the Vegetative State Recognizable in Infants?,” Medical Ethics for the Physician, 5 (1990): 4-5, 10.CrossRefGoogle Scholar
Meisel, A., The Right to Die (New York: Wiley, 1989), pp. 124–30.Google Scholar
In re Guardianship of Crum, 580 N.E.2d 876 (P. Ct. Franklin County, Ohio, 1991); In re Guardianship of Myers, 610 N.E.2d 663 (P. Ct. Summit County, Ohio 1993); In re Busalacchi, No. 93799 (P. Div. Cir. Ct. St. Louis County, Mo. 1991), No. 73677, 1993 WESTLAW 32356 (Mo. 1993); and Conservatorship of Sanchez, No. NEP 30869 (Sup. Ct. Los Angeles County, Cal. 1992).Google Scholar
The Multi-Society Task Force on PVS, “Medical Aspects of the Persistent Vegetative State (Part One),” N. Engl. J. Med., 330 (1994): 1499–508.CrossRefGoogle Scholar
Leicher, C.R. DiMarco, F.J., “Termination of Nutrition and Hydration in a Child with Vegetative State,” Archives of Pediatric and Adolescent Medicine, 148 (1994): 87–92; and Paris, John J. O'Connell, Kevin J., “Withdrawal of Nutrition and Fluids from a Neurologically Devastated Infant: The Case of Baby T,” Journal of Perinatology, 11 (1991): 372-73.CrossRefGoogle Scholar
Ashwal, S. et al., “The Persistent Vegetative State in Children: Report of the Child Neurology Society Ethics Committee,” Annals of Neurology, 32 (1992): 570–76.CrossRefGoogle Scholar
Yeh, T., personal communication with Nelson, Lawrence J., 1994.Google Scholar
Rubenstein, Jeffrey S. Unti, Sharon M. Winter, Robert J., “Pediatric Resident Attitudes About Technologic Support of Vegetative Patients and the Effects of Parental Input—A Longitudinal Study,” Pediatrics, 94 (1994): 8–12.Google Scholar
Task Force, supra note 5.Google Scholar
The report of the task force was approved by the American Academy of Neurology, Child Neurology Society, American Neurological Association, American Association of Neurological Surgeons, and American Academy of Pediatrics.Google Scholar
Task Force, supra note 5.Google Scholar
President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Deciding to Forego Life-Sustaining Treatment: A Report on the Ethical, Medical, and Legal Issues in Treatment Decisions (Washington D.C.: U.S. Government Printing Office, 1983), pp. 171–92.Google Scholar
Hastings Center, Guidelines on the Termination of Life-Sustaining Treatment and Care of the Dying (Briarcliff Manor: Hastings Center, 1987).Google Scholar
“Position of the American Academy of Neurology on Certain Aspects of the Care and Management of the Persistent Vegetative State Patient,” adopted by the Executive Board, American Academy of Neurology, Apr. 21, 1988, Cincinnati, Ohio, Neurology, 39 (1989): 125–26.Google Scholar
Council on Scientific Affairs and Council on Ethical and Judicial Affairs, “Persistent Vegetative State and the Decision to Withdraw or Withhold Life Support,” JAMA, 263 (1990): 426–30.CrossRefGoogle Scholar
American Nurses Association, “Position Statement in Foregoing Artificial Nutrition and Hydration,” adopted by the ANA board of directors, Apr. 2, 1992.Google Scholar
The Multi-Society Task Force on PVS, “Medical Aspects of the Persistent Vegetative State (Part Two),” N. Engl. J. Med., 330 (1994): 1572–79.CrossRefGoogle Scholar
Committee of Bioethics on the American Academy of Pediatrics, “Guidelines on Forgoing Life-Sustaining Medical Treatment,” Pediatrics, 93 (1994): 532–36.Google Scholar
Id. at p. 535.Google Scholar
We recognize that the persistent or permanent vegetative state may be “difficult to recognize in infants because of their immaturity and limited number of normal responses.” See Coulter, David L., “Neurologic Uncertainty in Newborn Intensive Care,” N. Engl. J. Med., 316 (1987): 840–44; and Coulter, , supra note 2.CrossRefGoogle Scholar
McCormick, Richard A., “To Save or Let Die: The Dilemma of Modern Medicine,” in How Brave a New World? (Garden City: Doubleday, 1981), pp. 339–51.Google Scholar
We reject the position, adopted by one commentator, that infants in the permanent vegetative must be fed by enteral means for this is simply providing food and water, although no obligation exists to feed such permanently unconscious patients by intravenous means for this is “medical treatment and not basic care.” See Coulter, , supra note 2.Google Scholar
Frader, , supra note 2; and Miraie, Emily D. Mahowald, Mary B., “Withholding Nutrition from Seriously Ill Newborn Infants: A Parent's Perspective,” Journal of Pediatrics, 113 (1988): 262–65.Google Scholar
Task Force, supra note 18 (emphasis added).Google Scholar
Task Force, supra note 5.Google Scholar
Task Force, supra note 18.Google Scholar
Nelson, Lawrence J. Nelson, Robert M., “Ethics and the Provision of Futile, Harmful, or Burdensome Treatment to Children,” Critical Care Medicine, 20 (1992): 427–33.CrossRefGoogle Scholar
Quan, Linda Kinder, Dennis, “Pediatric Submersions: Prehospital Predictors of Outcome,” Pediatrics, 90 (1992): 909–13.Google Scholar
Biggart, M.J. Bohn, D.J., “Effect of Hypothermia and Cardiac Arrest on Outcome of Near-Drowning Accidents in Children,” Journal of Pediatrics, 117 (1990): 179–83; and Quan, Kinder, , supra note 29.CrossRefGoogle Scholar
As a threshold matter, artificial nutrition must be considered medical treatment because only licensed physicians and other clinicians can employ it. A medical licensing board and a district attorney would surely take a very dim view of a nonphysician surgically inserting tubes into various parts of the body to administer nutrition. Most states make it a crime to engage in the unauthorized practice of medicine. See, for example, Cal. Bus. & Prof. Code §§ 2052, 2053.Google Scholar
Distinguishing between tube feedings and other treatments also commonly rests on psychological reasons, which are discussed in detail below.Google Scholar
See supra notes 3, 13–17, 19.Google Scholar
Lynn, J. Childress, J.F., “Must Patients Always Be Given Food and Water?,” Hastings Center Report, 13 (1983): 17–21.CrossRefGoogle Scholar
Annas, George J., “Do Feeding Tubes Have More Rights than Patients?,” Hastings Center Report, 16 (1986): 26–28 (original emphasis). In the case of minors, the parents are presumptively the proper persons to determine the usefulness of treatment to their child, although this presumption can be rebutted.Google Scholar
Paris, O’Connell, , supra note 6.Google Scholar
Paris, Fletcher, , supra note 2.Google Scholar
Taylor, Lesli O'Neill, James A., “Total Parenteral Nutrition in the Pediatric Patient,” Surgical Clinics of North America, 71 (1991): 477–91; and Mullick, Florabel G. Moran, Cesar A. Ishak, Kamal G., “Total Parenteral Nutrition: A Histopathologic Analysis of the Liver Changes in 20 Children,” Modern Pathology, 7 (1994): 190-94.CrossRefGoogle Scholar
Taylor, O’Neill, , supra note 38.Google Scholar
Colomb, V. et al., “Liver Disease Associated with Long-Term Parenteral Nutrition in Children,” Transplantation Proceedings, 26 (1994): 1467.Google Scholar
Takagi, Y. Okada, A., “Candidates for Small Bowel Transplantation: Our Experience and a Survey of Home Parenteral Nutrition in Japan,” Transplantation Proceedings, 26 (1994): 1446; Taylor, O’Neill, , supra note 38; and DePotter, S. et al., “Long-Term Home Parenteral Nutrition in Pediatric Patients,” Transplantation Proceedings, 26 (1994): 1443.Google Scholar
Taylor, O’Neill, , supra note 38.Google Scholar
Pharaon, I. et al., “Long-Term Parenteral Nutrition in Children Who Are Potentially Candidates for Small Bowel Transplantation,” Transplantation Proceedings, 26 (1994): 1442.Google Scholar
DePotter, et al., supra note 41.Google Scholar
Reyes, J. et al., “Small Bowel and Liver/Small Bowel Transplantation in Children,” Seminars in Pediatric Surgery, 2 (1993): 289–300.Google Scholar
Tzakis, Andreas G. et al., “Intestinal Transplantation in Children Under FK506 Immunosuppression,” Journal of Pediatric Surgery, 28 (1993): 1040–43; and Reyes, J. et al., “Candidates for Intestinal Transplantation and Possible Indicators of Outcome,” Transplantation Proceedings, 26 (1994): 1447-48.CrossRefGoogle Scholar
Reyes, et al., supra note 46.Google Scholar
Green, M. et al., “Early Infectious Complications of Liver-Intestinal Transplantation in Children: Preliminary Analysis,” Transplantation Proceedings, 26 (1994): 1420–21; and Todo, S. et al., “Intestinal Transplantation at the University of Pittsburgh,” Transplantation Proceedings, 26 (1994): 1409-10.Google Scholar
Columb, V. et al., “Liver Disease Associated with Long-Term Parenteral Nutrition in Children,” Transplantation Proceedings, 26 (1994): 1467.Google Scholar
The decision not to resect the necrotic bowel during Jennifer's second operation is reasonable based on these same considerations. We recommend that a pediatric surgeon have a discussion with the parents prior to a “second look” operation so that he or she has knowledge of their wishes in anticipation of the possibility that extensive bowel necrosis would preclude future enteral feedings. We also note that progress is being made in research on long-term TPN and intestinal transplantation and that the clinical prospects for children with total intestinal failure may change in the future.Google Scholar
McCann, R.M. Hall, W.J. Groth-Juncker, A., “Comfort Care for Terminally Ill Patients: The Appropriate Use of Nutrition and Hydration,” JAMA, 272 (1994): 1263–66; and Schmitz, P. O'Brien, M., “Observations on Nutrition and Hydration in Dying Cancer Patients,” in Lynn, J., ed., By No Extraordinary Means (Bloomington: Indiana University Press, 1986), pp. 29-38.CrossRefGoogle Scholar
Miller-Thiel, Janice Glover, Jacqueline J. Beliveau, Ev, “Caring for the Dying Child,” in Gallagher, C. Amenia, M., eds., Nutrition and Hydration in Hospice Care: Needs, Strategies, Ethics (Haworth Press, 1993), pp. 55–72.Google Scholar
Coulter, , supra note 2; Siegler, M. Weisbard, A.J., “Against the Emerging Stream: Should Fluids and Nutritional Support Be Discontinued?,” Archives of Internal Medicine, 145 (1985): 129–31; and May, W.E. et al., “Feeding and Hydrating the Permanently Unconscious and Other Vulnerable Persons,” Issues in Law and Medicine, 3 (1987): 203-17.Google Scholar
See supra notes 13–17, 19.Google Scholar
Childress, , supra note 1; Lo, Dornbrand, , supra note 1; Steinbrock, Lo, , supra note 1; Paris, Fletcher, , supra note 2; Frader, , supra note 2; and Lynn, Childress, , supra note 34.Google Scholar
Meisel, , supra note 3.Google Scholar
Siegler, Weisbard, , supra note 53.Google Scholar
Coulter, , supra note 2. Dr. Coulter claims that no one has “the moral authority to decide to starve (or dehydrate) [a permanently vegetative] infant to death.” However, the task force report rejects the factual assumption beneath this moral claim: Such infants cannot experience hunger or thirst, pain or suffering. See Task Force, supra note 18.Google Scholar
Siegler, Weisbard, , supra note 53; and Coulter, , supra note 2.Google Scholar
Conservatorship of Drabick, 200 Cal. App. 3d 185, 208 (1988).Google Scholar
Id.Google Scholar
“Report of the Hastings Center Research Project on the Care of Imperiled Newborns,” Hastings Center Report, 17 (1987): 5–32.Google Scholar
Quan, Kinder, , supra note 29.Google Scholar
Rhoden, Nancy K., “Treating Baby Doe: The Ethics of Uncertainty,” Hastings Center Report, 16 (1986): 34–42.CrossRefGoogle Scholar
Robertson, John A., “Dilemma in Danville,” Hastings Center Report, 11 (1981): 5–8.CrossRefGoogle Scholar
Hall, Jacqulyn K., “Caring for Corpses or Killing Patients?,” Nursing Management, 25 (1994): 81–89 is a good example of a very poorly reasoned article that attempts to provoke such fear.CrossRefGoogle Scholar
In re Guardianship of Crum, supra note 4.Google Scholar
In re Guardianship of Myers, supra note 4; In re Busalacchi, supra note 4; and Conservatorship of Sanchez, supra note 4.Google Scholar
Meisel, , supra note 3.Google Scholar
See Crum, , supra note 4.Google Scholar
See Myers, , supra note 4.Google Scholar
In the Matter of Lawrance, 579 N.E.2d 32 (Ind. 1991).Google Scholar
Guardianship of Doe, 583 N.E.2d 1263 (Mass. 1992).Google Scholar
In the Matter of the Guardianship of L.W., 482 N.W.2d 60 (Wis. 1992).Google Scholar
In re Guardianship of Grant, 747 P.2d 445 (Wash. 1987), modified, 757 P.2d 534 (1988). The Missouri Supreme Court in Cruzan v. Harmon, 760 S.W.2d 408 (1989), affirmed sub nom on other grounds, Cruzan v. Director, Missouri Department of Health, 476 U.S. 160 (1990), reached a similar conclusion regarding the status of medically provided nutrition.Google Scholar
In re Storar, , 438 N.Y.S.2d 266, 275 (N.Y. 1981), cert. denied, 454 U.S. 858 (1981), ruled that blood transfusions had to be given to a profoundly retarded, terminally ill cancer patient, despite his mother's refusal, and suggested that the “transfusions were analogous to food—they would not cure the cancer, but they could eliminate the risk of death from another treatable cause.”Google Scholar
In re L.H.R., 321 S.E.2d 716, 723 (Ga. 1984); In re Guardianship of Barry, 445 So.2d 365 (Fla. App. 1984); In re Rosebush, 491 N.W.2d 633 (Mich. App. 1992); and In re P.V.W., 424 So.2d 1015 (La. 1982) (relevant Louisiana statutory law has changed since this opinion was rendered).Google Scholar
In re Jane Doe, 418 S.E.2d 3 (Ga. 1992).Google Scholar
In re Swan, 569 A.2d 1202 (Maine 1990).Google Scholar
In re Guardianship of Crum, supra note 4; and In re Guardianship of Myers, supra note 4.Google Scholar
U.S. Child Abuse Prevention and Treatment Amendments of 1984, Pub. L. No. 98–457.Google Scholar
Department of Health and Human Services, “Child Abuse and Neglect Prevention and Treatment Program,” Federal Register, 50 (1985): 14878–901.Google Scholar
Bowen v. American Hospital Association, et al., 106 S. Ct. 2101 (1986).Google Scholar
Dept. of Health and Human Services, supra note 82.Google Scholar
Id.Google Scholar
Leicher, DiMarco, , supra note 6; and Bopp, J. Nimz, M., “A Legal Analysis of the Child Abuse Amendments of 1984,” in Caplan, A. et al., eds., Compelled Compassion (Totowa: Humana Press, 1992), pp. 73–103.Google Scholar
Smith, S.R., “Disabled Newborns and the Federal Child Abuse Amendments: Tenuous Protection,” Hastings Law Review, 37 (1986): 765–825.Google Scholar
Nelson, Lawrence J., “Perinatology/Neonatology and the Law: Looking Beyond Baby Doe,” in Klaus, M. Faranoff, A.A., eds., The Year Book of Perinatal/Neonatal Medicine (Chicago: Year Book Medical, 1988), pp. 5–10.Google Scholar
Kopelman, L.M. Irons, T.G. Kopelman, A.E., “Neonatologists Judge the Baby Doe Regulations,” N. Engl. J. Med., 318 (1988): 677–83.CrossRefGoogle Scholar
West's Louisiana Stat. Anno. 1994, Children's Code art. 1553.Google Scholar
Id., art. 1554. Such treatment may be forgone when a child (1) is in a “continual profound comatose state [sic]”; (2) suffers from a “terminal and irreversible condition despite every appropriate medical treatment to correct such condition”; or (3) when the “potential risks to the child's life or health inherent in any treatment … outweigh the potential benefits for survival.”Google Scholar
Ariz. Rev. Stat. Anno. 1993 § 36–2281.CrossRefGoogle Scholar
West's Smith-Hurd Ill. Comp. Stat. Anno. ch. 325, § 5/3 (Supp. 1994).Google Scholar
Gen. Laws of R.I. (Supp. 1990).Google Scholar
Mont. Code Anno. 1993, § 41-3-102(3)(a), (5)(a)(i), (8)(c), (16).Google Scholar
Vernon's Anno. Missouri Stats. § 210.110(5) (Supp. 1994).Google Scholar
Corbett v. D’Alessandro, 487 So.2d 368 (Fla. Dist. Ct. App. 1986); and Cruzan v. Director, Missouri Department of Health, 497 U.S. 261 (1990) (in which a majority of the justices considered medically provided nutrition to be a form of medical treatment).Google Scholar
Leicher, DiMarco, , supra note 6.Google Scholar
See Task Force, supra note 18.Google Scholar
The task force has noted that patients in the permanent vegetative state do not manifest the characteristic signs of malnutrition after depletion of nutrients over a prolonged period, that nursing care can prevent the most common signs of acute dehydration, and that such patients do not experience hunger or thirst (id.).Google Scholar
Miller-Thiel, et al., supra note 52.Google Scholar
In re A.C., 573 A.2d 1235 (D.C. 1990); and Meisel, , supra note 3, xlvii, § 4.21 (1994 Supp. No. 2).Google Scholar
Lynn, Childress, , supra note 34.Google Scholar
Id.; see also Miller-Thiel, et al., supra note 52.Google Scholar