H Decisions to Forgo Life-Sustaining Treatment for Incompetent Patients

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1 WMS policy: ETH-026 Medical Neglect and Child Abuse (Baby Doe): The Wisconsin Medical Society opposes any change to the Wisconsin Child Abuse Law that would include the federal definition of withholding medically indicated treatment, which is defined as: The failure to respond to the infant s life-threatening conditions by providing treatment (including appropriate nutrition, hydration and medication) which in the treating physician s or physicians reasonable medical judgment, will be most likely to be effective in ameliorating or correcting all such conditions, except that the term does not include the failure to provide treatment (other than appropriate nutrition, hydration or medication) to an infant when, in the treating physician s or physicians reasonable medical judgment: a. The infant is chronically and irreversibly comatose; b. The provision of such treatment would: Merely prolong dying: Not be effective in ameliorating or correcting all of the infant s life-threatening conditions; or Otherwise be futile in terms of the survival of the infant; or c. The provision of such treatment would be virtually futile in terms of survival of the infant and the treatment itself under such circumstances would be inhumane. (The Child Abuse Prevention and Treatment Act, Sec Definitions, June 25, 2003). (HOD, 0408) AMA policy: H Decisions to Forgo Life-Sustaining Treatment for Incompetent Patients The AMA believes that: (1) Advance directives (living wills and durable powers of attorney for health care) are the best insurance for individuals that their interests will be promoted in the event that they become incompetent. Generally, it is most effective if the individual designates a proxy decision maker and discusses with the proxy his or her values regarding decisions about life support. (2) Without an advance directive that designates a proxy, the patient's family should become the surrogate decision maker. Family includes persons with whom the patient is closely associated. In the case when there is no person closely associated with the patient, but there are persons who both care about the patient and have some relevant knowledge of the patient, such relations should be involved in the decision-making process, and may be appropriate surrogates. (3) It is the responsibility of physicians to provide all relevant medical information and to explain to surrogate decision makers that decisions should be based on substituted judgment (what the patient would have decided) when there is evidence of patients' preferences and values. If there is not adequate evidence of preferences and values, the decision should be based on the best interests of the patient (what outcome would most likely promote the patient's well-being). (4) Institutional ethics committees should be established for the purpose of facilitating sound decision making. These ethics committees should be structured so that a diversity of perspectives, including those from outside medicine, are represented. (5) The surrogate's decision should almost always be accepted by the physician. However, there are four situations that may require either institutional or judicial review and/or intervention in the decision-making process. These situations are when: (a) there is no available family willing to be the patient's surrogate decision maker;

2 (b) there is a dispute among family members and there is no decision maker designated in an advance directive; (c) a health care provider believes that the family's decision is clearly not what the patient would have decided if competent; and (d) a health care provider believes that the decision is not a decision that could reasonably be judged to be in the patient's best interests. Decisions based on a conflict of interest generally would not be in the patient's best interest. In these four cases, the guidelines outlined in the report should be followed. In particular, when there are disputes among family members or between family and health care providers, the use of ethics committees specifically designed to facilitate sound decision making is recommended before resorting to the courts. (6) Judicial review for decisions about life-sustaining treatment should be a last resort. It is strongly encouraged that when judicial review is necessary, in nonemergency situations, the courts should determine who is to make treatment decisions, including appointing a guardian, rather than making treatment decisions. (7) When a permanently unconscious patient was never competent or had not left any evidence of previous preferences or values, since there is no objective way to ascertain what would be in the best interests of the patient, the surrogate's decision should not be challenged as long as the decision is based on the decision maker's true concern for what would be best for the patient. (8) In the case of seriously ill or handicapped newborns, present and future interests of the infant must be considered. Due to the complexities involved in deciding about life support for seriously ill newborns, physicians should specifically discuss with parents the risks and uncertainties involved. When possible, parents should be given time to adjust to the shock of the situation and absorb the medical information presented to them before making decisions about life-sustaining treatment. In addition, counseling services and an opportunity to talk with couples who have had to make similar decisions should be available to the parents. (9) Due to the complexity of decisions for permanently unconscious patients and newborns, an ethics committee should be available, whenever possible, to facilitate the surrogate's decision making. (10) Hospitals and other health care facilities should establish protocols regarding assessment of decision making capacity, informing patients about advance directives, identifying surrogate decision makers, the use of advance directives, substituted judgment and best interests in decision making, and the procedures for challenging the decision of a surrogate. These protocols should be in accordance with the CEJA preceding guidelines. (CEJA Rep. D, A-91; Reaffirmed: Res. 3, A-99; Reaffirmed: Res. 209, A-05; Reaffirmed: BOT Rep. 9, A-08; Reaffirmed: BOT Rep. 14, I-09) E Treatment Decisions for Seriously Ill Newborns The primary consideration for decisions regarding life-sustaining treatment for seriously ill newborns should be what is best for the newborn. Factors that should be weighed are (1) the chance that therapy will succeed, (2) the risks involved with treatment and nontreatment, (3) the degree to which the therapy, if successful, will extend life, (4) the pain and discomfort associated with the therapy, and (5) the anticipated quality of life for the newborn with and without treatment. Care must be taken to evaluate the newborn s expected quality of life from the child s perspective. Life-sustaining treatment may be withheld or withdrawn from a newborn when the pain and suffering expected to be endured by the child will overwhelm any potential for joy during his or her life. When an infant suffers extreme neurological damage, and is consequently not capable of experiencing either suffering or joy, a decision may be made to withhold or withdraw life-sustaining treatment. When life-sustaining treatment is withheld or withdrawn, comfort care must not be discontinued. When an infant s prognosis is largely uncertain, as is often the case with extremely premature newborns, all life-sustaining and life-enhancing treatment should be initiated. Decisions about life-sustaining treatment should be made once the prognosis becomes more certain. It is not necessary to attain absolute or near absolute prognostic certainty before life-sustaining treatment is withdrawn, since this goal is often unattainable and risks unnecessarily prolonging the infant s suffering. Physicians must provide full information to parents of

3 seriously ill newborns regarding the nature of treatments, therapeutic options, and expected prognosis with and without therapy, so that parents can make informed decisions for their children about lifesustaining treatment. Counseling services and an opportunity to talk with persons who have had to make similar decisions should be available to parents. Ethics committees or infant review committees should also be utilized to facilitate parental decision making. These committees should help mediate resolutions of conflicts that may arise among parents, physicians, and others involved in the care of the infant. These committees should also be responsible for referring cases to the appropriate public agencies when it is concluded that the parents decision is not a decision that could reasonably be judged to be in the best interests of the infant. (I, III, IV, V) Issued June 1994 based on the report "Treatment Decisions for Seriously Ill Newborns," adopted June H Treatment Decisions for Seriously Ill Newborns Physicians should play an active role in advocating for changes in the Child Abuse Prevention Act as well as state laws that require physicians to violate the ethical guidelines stated in E (Treatment Decisions for Seriously Ill Newborns). (CEJA Rep. I, A-92; Modified and Reaffirmed: CEJA Rep. 1, A-03) H Guidelines on Neonatal Resuscitation Our AMA will support programs designed to educate health care professionals who treat premature infants, as well as parents and caregivers of premature infants, on evidence-based guidelines on neonatal resuscitation, especially with regard to premature infants born at the cusp of viability. (Sub. Res. 520, A-12) E-2.17 Quality of Life In the making of decisions for the treatment of seriously disabled newborns or of other persons who are severely disabled by injury or illness, the primary consideration should be what is best for the individual patient and not the avoidance of a burden to the family or to society. Quality of life, as defined by the patient s interests and values, is a factor to be considered in determining what is best for the individual. It is permissible to consider quality of life when deciding about life-sustaining treatment in accordance with Opinions 2.20, "Withholding or Withdrawing Life-Sustaining Medical Treatment," 2.215, "Treatment Decisions forseriously Ill Newborns," and 2.22, "Do-Not-Resuscitate Orders." (I, III, IV) Issued March 1981; Updated June Secondary: H Neonatal Circumcision Our AMA: (1) encourages training programs for pediatricians, obstetricians, and family physicians to incorporate information on the use of local pain control techniques for neonatal circumcision; (2) supports the general principles of the 1999 Circumcision Policy Statement of the American Academy of Pediatrics, which reads as follows: "Existing scientific evidence demonstrates potential medical benefits of newborn male circumcision; however, these data are not sufficient to recommend routine neonatal circumcision. In circumstances in which there are potential benefits and risks, yet the procedure is not essential to the child's current well-being, parents should determine what is in the best interest of the

4 child. To make an informed choice, parents of all male infants should be given accurate and unbiased information and be provided the opportunity to discuss this decision. If a decision for circumcision is made, procedural analgesia should be provided;" and (3) urges that as part of the informed consent discussion, the risks and benefits of pain control techniques for circumcision be thoroughly discussed to aid parents in making their decisions. (CSA Rep. 10, I-99; Reaffirmed: CSAPH Rep. 1, A-09) H Neonatal Screening for HIV Infection Our AMA: (1) Urges the U.S. Public Health Service, other appropriate federal agencies, private researchers, and health care industries to continue to pursue research, development, and implementation of diagnostic tests and procedures for more accurate demonstration of HIV infection in the newborn; and supports the widespread use of such tests in early diagnosis; (2) Favors giving consideration to rapid HIV testing of newborns, with maternal consent, when the maternal HIV status has not been determined during pregnancy or labor; and (3) Supports voluntary, routine HIV testing of neonates in states with a high prevalence of HIV infection with maintenance of strict confidentiality. When treatment modalities with proven benefits for infected neonates are available, our AMA supports mandatory HIV testing of all newborns in high prevalence areas. (CSA Rep. 4, A-03) H Impact of 24-Hour Postpartum Stay on Infant and Maternal Health (1) The AMA is concerned about the trend toward increasingly brief perinatal hospital stays as a routine practice in the absence of adequate data to demonstrate the practice is safe. (2) Policy of the AMA is that in the absence of definitive empirical data, perinatal discharge of mothers and infants should be determined by the clinical judgment of attending physicians and not by economic considerations. This decision should be made based on the criteria of medical stability, delivery of adequate predischarge education, need for neonatal screening, and determination that adequate feeding is occurring, and with consideration of the mother's social and emotional needs and preferences. A plan should be in place for psychosocial and medical follow-up, as outlined in the Guidelines for Perinatal Care developed by the AAP and ACOG. (3) The AMA should encourage well-designed experimental studies to identify safe neonatal practices with regard to the hospital discharge of mothers and infants. (4) The AMA supports the collaborative efforts of the Maternal and Child Health Bureau and other concerned national organizations to examine more thoroughly the issue of appropriate medical care during the perinatal period. (CSA Rep. 5, A-95; Reaffirmed by Rules & Credentials Cmt., A-96; Reaffirmed and Modified: CSAPH Rep. 3, A-06) E Anencephalic Neonates as Organ Donors Anencephaly is a congenital absence of major portion of the brain, skull, and scalp. Anencephalic neonates are thought to be unique from other brain-damaged beings because of a lack of past consciousness with no potential for future consciousness. Physicians may provide anencephalic neonates with ventilator assistance and other medical therapies that are necessary to sustain organ perfusion and viability until such time as a determination of death can be made in accordance with

5 accepted medical standards, relevant law, and regional organ procurement organization policy. Retrieval and transplantation of the organs of anencephalic infants are ethically permissible only after such determination of death is made, and only in accordance with the Council s guidelines for transplantation. (I, III, V) Issued March 1992 based on the report "Anencephalic Infants as Organ Donors," adopted December 1988; Updated June 1994; Updated December 1994 based on the report "The Use of Anencephalic Neonates as Organ Donors," adopted December 1994; and updated June 1996 based on the report "Anencephalic Infants as Organ Donors - Reconsideration," adopted December H Late-Term Pregnancy Termination Techniques (1) The term 'partial birth abortion' is not a medical term. The AMA will use the term "intact dilatation and extraction"(or intact D&X) to refer to a specific procedure comprised of the following elements: deliberate dilatation of the cervix, usually over a sequence of days; instrumental or manual conversion of the fetus to a footling breech; breech extraction of the body excepting the head; and partial evacuation of the intracranial contents of the fetus to effect vaginal delivery of a dead but otherwise intact fetus. This procedure is distinct from dilatation and evacuation (D&E) procedures more commonly used to induce abortion after the first trimester. Because 'partial birth abortion' is not a medical term it will not be used by the AMA. (2) According to the scientific literature, there does not appear to be any identified situation in which intact D&X is the only appropriate procedure to induce abortion, and ethical concerns have been raised about intact D&X. The AMA recommends that the procedure not be used unless alternative procedures pose materially greater risk to the woman. The physician must, however, retain the discretion to make that judgment, acting within standards of good medical practice and in the best interest of the patient. (3) The viability of the fetus and the time when viability is achieved may vary with each pregnancy. In the second-trimester when viability may be in question, it is the physician who should determine the viability of a specific fetus, using the latest available diagnostic technology. (4) In recognition of the constitutional principles regarding the right to an abortion articulated by the Supreme Court in Roe v. Wade, and in keeping with the science and values of medicine, the AMA recommends that abortions not be performed in the third trimester except in cases of serious fetal anomalies incompatible with life. Although third-trimester abortions can be performed to preserve the life or health of the mother, they are, in fact, generally not necessary for those purposes. Except in extraordinary circumstances, maternal health factors which demand termination of the pregnancy can be accommodated without sacrifice of the fetus, and the near certainty of the independent viability of the fetus argues for ending the pregnancy by appropriate delivery. (BOT Rep. 26, A-97; Modified and Reaffirmed: CSAPH Rep. 3, A-07)

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