Role of Law. Federal regulations: definitions. Federal Law & Regulations 10/23/2012. Wisconsin Law & Premature Infants:

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1 Wisconsin Law & Care of Newborns: Benefit or Burden? Meriter Ethics Conference November 2, 2012 Kellie Lang, JD, RN, Assistant Adjunct Professor Medical College of Wisconsin Wisconsin Law & Premature Infants: Benefit or Burden? I. Overview: Law & Medical Decision making for Children A. Role of Parents B. Law 1. Federal 2. Wisconsin 3. Case law example II. Case law: Extremely Premature Infants A. Miller, TX Supreme Court, 2003 B. Montalvo, WI Appellate Court, 2002 III. Discussion 2 Role of Parents Natural bonds of affection lead parents to act in the best interests of their children (Parham, 1979) A child is not the mere creature of the State Parents may be free to become martyrs themselves. But it does not follow that they are free, identical circumstances, to make martyrs of their children before they have reached the age of full and legal discretion when they can make that choice for themselves. (Prince, 1943) Role of Law State intervention justified by doctrine of Parens Patriae (parent of the country) Rationale: Sanctity of life; Protection of vulnerable population Usual mechanism = Child Abuse statutes 3 4 Federal Law & Regulations Child Abuse Prevention & Treatment Act (CAPTA) Federal funding statute State s receipt of funding dependent upon state having a procedure in place to address [reports/suspicion] of child abuse, including [disabled infants] Baby Doe regulations Federal regulations: definitions Medical neglect includes withholding of medically indicated treatment from a disabled infant with a lifethreatening condition Withholding of medically indicated tx means the failure to respond to the infant s life threatening conditions by providing treatment (including appropriate nutrition, hydration, and medication) which in the treating physicians reasonable medical judgment will be most likely to be effective in ameliorating or correcting all such conditions Exceptions: comatose, prolong dying/not correct underlying problem, futile/inhumane 5 6 1

2 WI Statute Neglect means failure, refusal, or inability on the part of a caregiver, for reasons other than poverty, to provide necessary care, food, clothing, medical or dental care, or shelter so as to seriously endanger the physical health of the child. Statutory definition extends protection to all children, including infants with disabilities (WI DHFS, 1996) WI Dept. of Health & Family Services Guidelines (Baby Doe) 1996 Parents have legal right and obligation, as well as personal insight, concern and love to make decisions regarding health and welfare of their children. In vast majority of instances, parents are the most enlightened & thoughtful decision makers for their children Baby Doe cases may be difficult to resolve and are rarely clear cut Support interdisciplinary resources and encourage informal, non judicial resolution 7 8 WI Law and Minors Parental permission Required until 18 years of age Exceptions (WI) STD treatment HIV testing (14y/o) Mental Health (14 y/o) Bone marrow donation to sibling (12 y/o) Drug/Alcohol treatment (12 y/o) Legal Intervention: compelling medical treatment Usually clear benefit that outweighs risk Example: children of Jehovah Witnesses Parental refusal upheld Example: Newmark v. Williams (Delaware 1991) The State s interest in forcing a minor to undergo medical care diminishes as the risks of treatment increase and its benefits decrease. Does the same decision making standard apply to parents of extremely premature newborns? 9 10 Case law: Extremely premature infants Miller (Texas Supreme Court, 2003) Montalvo (Wisconsin Appellate Court, 2002) Miller v. HCA, Inc. (Supreme Court of Texas 2003) Infant born at 23 weeks (1990) Parents had refused resuscitation Infant had severe impairments Alleged battery & negligence against HCA Trial court awarded $60m to parents (1998) TX Supreme Court: Emergent circumstances were exception to informed consent requirement

3 Montalvo v. Borkovec (Wisconsin Court of Appeals 2002) Infant born at 23 weeks (1996) Informed consent for Cesarean Resuscitation provided to infant No allegations of harm or disability Parents allege: because physicians did not advise them of the risks related to premature birth, consent was not informed (1999) Trial court dismissed; Appellate court affirmed Wisconsin Appellate Court Holding No obligation to obtain informed consent because no available, viable alternative existed. Reasons why there was no alternative: WI Case Law (Edna MF) Federal Law (Child Abuse Protection & Treatment Act) Emergency exception applied Public policy Claim dismissed (Trial Court decision affirmed.) Montalvo Thus, in Wisconsin, in the absence of persistent vegetative state, the right of a parent to withhold life sustaining medical treatment from a child does not exist. Because the Montalvo infant was not in persistent vegetative state the alternative of withholding life sustaining treatment did not exist. Unraveling Montalvo 1. Informed consent analysis 2. Interpretation of Edna MF 3. Application of CAPTA 4. Public policy considerations 5. Best interests of the child Montalvo Court and Informed Consent [C]omes into play only when there is a need to make a choice of available, viable alternatives WI Statute Information on alternative modes of treatment Any physician who treats a patient shall inform the patient about the availability of all alternate, viable medical modes of treatment and about the benefits and risks of those treatments. The physician s duty to inform the patient does not require disclosure of: (5) Information in emergencies where failure to provide treatment would be more harmful to the patient than treatment

4 According to the appellate court, [Informed consent] comes into play only when there is a need to make a choice of available, viable alternatives In other words, there must be a choice that can be made Accurate analysis? Query: Does this mean that there is no need for physicians to obtain informed consent when there is only a single treatment option? Wisconsin Supreme Court on Informed Consent: The concept of informed consent is based on a tenet that in order to make a rational and informed decision about undergoing a particular treatment a patient has the right to know about the significant potential risks involved in the proposed treatment or surgery. Johnson v. Kokomoor Emphasis added Appellate Court: No obligation to engage in informed consent (statute does not apply) On the other hand Emergency exception applies If the informed consent statute/doctrine does not apply, an emergency exception is not necessary. Informed Consent Critique Summary Informed consent is necessary regardless of treatment options unless an exception applies Intent of legal doctrine is to increase information for patients, enable intelligent decision making; also respects autonomy and bodily integrity Consent was not necessary not because of lack of alternatives but because it was an emergency Emergency exception to informed consent applied to Montalvo and should have been sufficient to dismiss the claim Interpretation of Edna MF No alternatives available because of Edna MF and CAPTA Montalvo court cited Wisconsin Supreme Court, in Edna MF, as having concluded, either withholding or withdrawing lifesustaining medical treatment is not in the best interests of any patient who is not in a persistent vegetative state. Interpretation of Edna MF Thus, in Wisconsin, in the absence of persistent vegetative state, the right of a parent to withhold life sustaining medical treatment from a child does not exist. Because the Montalvo infant was not in a persistent vegetative state the alternative of withholding life sustaining treatment did not exist

5 Review of Edna MF 1997 Wisconsin Supreme Court decision Relied on another Wisconsin Supreme Court decision, LW (1992) Context of each case significant to respective decisions and law established Edna MF and LW do not apply to parental decision making for children In re LW (WI Supreme Court 1992) 79 year old incompetent man May never have been competent (schizophrenia) Institutionalized for 40 years Guardian = Non profit corporation No close friends, relatives No indication of LW s wishes LW suffered heart attack, in persistent vegetative state LW Issue: Whether an incompetent individual in a persistent vegetative state has the right to refuse life sustaining medical treatment, including artificial nutrition and hydration, and whether a court appointed guardian may exercise that right on the ward s behalf. (Emphasis added) LW Holding: Incompetent individuals have the right to refuse unwanted life sustaining medical treatment A guardian may consent to the withholding or withdrawal of life sustaining medical treatment when 1. Incompetent patient s attending physician (with 2 physicians)[clarify] determine that patient is in persistent vegetative state and no chance of recovery AND Guardian determines in good faith that the withholding or withdrawal of treatment is in the ward s best interests, according to the objective factors below. (Degree of humiliation, dependence, loss of dignity, life expectancy, prognosis, risks, benefits, etc.) LW expressly excluded family member decision making in Footnote 16: We do not decide today whether a family member may consent to the withholding or withdrawal of life sustaining medical treatment from a patient, because that question is not before us. Our review is limited to whether a court appointed guardian, where there can be no familial decisional process, may consent to the withholding or withdrawal of such treatment from a patient in a persistent vegetative state. Edna MF 71 year old woman Alzheimer s type dementia Bedridden, contracted limbs Dependent for cares Feeding tube Not in persistent vegetative state Outdated neurological criteria used Was not examined by neurologist Court appointed guardian = Betty Spahn (Ms. MF s sister)

6 Edna MF Issues: 1. Whether guardian of incompetent person who has not executed advance directive and is not in persistent vegetative state has authority to direct withdrawal of life sustaining medical treatment from incompetent person, and 2. Whether, in this case, there is clear statement of Edna s desire to die rather than have extreme measures to sustain her life under circumstances such as these Edna MF Holding 1. Relying on LW, we hold that a guardian may only direct the withdrawal of life sustaining medical treatment if the incompetent ward is in a persistent vegetative state and the decision to withdraw is in the best interests of the ward. 2. We further hold that in this case, where the only indication of Edna s desires was made 30 years ago and under different circumstances, there is not a clear statement of intent such that Edna s guardian may authorize withholding of nutrition. (Emphasis added.) Edna MF: An accurate interpretation? [A] guardian may only direct the withdrawal of lifesustaining medical treatment, including nutrition and hydration, if the incompetent ward is in a persistent vegetative state and the decision to withdraw is in the best interests of the ward. Montalvo: [The Edna court] thus concluded that either withholding or withdrawing life sustaining medical treatment is not in the best interests of any patient who is not in a persistent vegetative state. Edna MF does not apply to decisionmaking by parents for their children Limited to state actors Court appointed guardians Incompetent wards LW specifically excluded decision making involving family members The distinguishing factor of court appointed guardian as family member not raised in Edna MF LW limited to state actors An incompetent is a ward of the state and this state s parens patriae power requires this court to ensure ward s best interests are protected A guardian is a state actor [whose] authority derives from the state s parens patriae power and is purely statutory. court appointed guardians fulfill the parens patriae duty of the state to protect the best interests of the incompetent ward. Edna MF Critique Summary Edna MF is limited to state actors Relies on LW a guardian may only direct the withdrawal of life sustaining medical treatment if the incompetent ward is in persistent vegetative state and the decision to withdraw is in the best interests of the ward. Montalvo court expanded scope of prior case law without providing legal rationale

7 Application of CAPTA (Child Abuse Prevention & Treatment Act ) Under CAPTA, states must have in place procedures for responding to child neglect The Act includes a provision preventing the withholding of medically indicated treatment from a disabled infant with a lifethreatening condition. The implied choice of withholding treatment is exactly what CAPTA prohibits. (Montalvo) 37 CAPTA Critique Summary CAPTA is a federal funding statute Conditions state s receipt of federal funding for child abuse program on maintaining a procedure for responding to reports of neglect of newborns State must have procedures for handling report of possible medical neglect of an infant in place (WI DHFS Guidelines 1996; Emphasis added) Child neglect determination for withholding treatment is fact intensive and charges are rare 38 Public Policy Considerations Best Interests of the Child 1. Preservation of life 2. Physician liability 3. Parental variations Summary Discussion Emergency exception was sufficient to dismiss Montalvo claim Care for premature infants, like all children, must incorporate ethical principles and respect for parental perspectives, medical prognosis and professional standards Montalvo subjects children to treatment without balancing benefits/burdens as part of a best interests evaluation Montalvo creates confusion regarding the law because of the misapplication of precedent and federal law

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