I 116th CONGRESS 2d Session H. R. 5582 IN THE HOUSE OF REPRESENTATIVES January 10, 2020 Mr. Murphy of North Carolina (for himself, Mr. Banks , Mr. Lamborn , Mr. Latta , Mr. Meadows , Mr. Gaetz , Mr. Mooney of West Virginia , Mr. Gosar , Mr. Babin , Mr. Norman , Mr. Rutherford , and Mr. Harris ) introduced the following bill; which was referred to the Committee on Energy and Commerce A BILL To amend titles XIX and XXI of the Social Security Act to require hospitals and certain other participating providers under Medicaid or the Children’s Health Insurance Program to disclose the provider’s policy on parental consent for the provision, withdrawal, or denial of life-sustaining treatment for minors, and for other purposes.

1. Short title This Act may be cited as the Parental Accessibility Rights for Emergency and Negligent Treatment Act . 2. Life-sustaining treatment parental consent policy under Medicaid and CHIP (a) Medicaid Section 1902(w) of the Social Security Act ( 42 U.S.C. 1396a(w) ) is amended— (1) by striking the implementation of such rights; and all that precedes it through (w)(1) and inserting the following: (w) (1) For purposes of subsection (a)(57) and sections 1903(m)(1)(A) and 1919(c)(2)(E), the requirements of this subsection are that a provider or organization (as the case may be) maintain written policies and procedures with respect to all individuals, and in the case of any minor individuals (as defined in paragraph (4)(B)) with respect to the parents and legal guardians of such individuals, receiving medical care by or through the provider or organization— (A) to provide, on an Internet website of the provider or organization, and upon request of an individual or, in the case of a minor individual, at least 1 parent or legal guardian of the minor individual, written information to each such individual, parent, or legal guardian concerning— (i) an individual's rights under State law (whether statutory or as recognized by the courts of the State) to make decisions concerning such medical care, including the right to accept, withdraw, or refuse, a medical or surgical treatment or life-sustaining procedures, including hydration and sustenance, and the right to formulate advance directives (as defined in paragraph (4)(A)); (ii) the provider's or organization's written policies respecting the implementation of such rights; (iii) in the case of a minor individual— (I) the disclosure of whether or not the consent of at least 1 parent or legal guardian of the minor individual is required for the provision, withdrawal, or denial of life-sustaining procedures, including hydration and sustenance, or prior to a do-not-resuscitate order or similar physician’s order being instituted; (II) notice that the requirement to provide such disclosure must be noted in the minor individual's medical records; and (III) if any such consent is required, the procedures for how the consent is obtained and recorded; ; (2) in paragraph (2), by striking adult individual and inserting individual, and in the case of a minor individual, to at least 1 parent or legal guardian of the minor individual ; (3) in paragraph (3), by striking section and inserting subsection ; and (4) in paragraph (4)— (A) by striking subsection, the term and inserting “subsection— (A) the term ; and (B) by adding at the end the following: (B) the term minor individual means an individual who is an unemancipated individual who has not attained 18 years of age. . (b) Application to CHIP Section 2107(e)(1) of the Social Security Act ( 42 U.S.C. 1397gg(e)(1) ) is amended— (1) by redesignating subparagraphs (D) through (S) as subparagraphs (E) through (T), respectively; and (2) by inserting after subparagraph (C) the following: (D) Subsections (a)(57) and (w) of section 1902 (relating to maintenance of written policies and procedures respecting advance directives and parental consent for the denial of life-sustaining procedures for minor individuals). . (c) Effective date (1) In general Subject to paragraph (2), the amendments made by this section shall apply to provider agreements entered into or renewed on or after January 1, 2020. (2) Exception for State legislation In the case of a State plan under title XIX or XXI of the Social Security Act which the Secretary of Health and Human Services determines requires State legislation (other than legislation appropriating funds) in order for the plan to meet the additional requirements imposed by the amendments made by this section, the State plan shall not be regarded as failing to comply with the requirements of such title solely on the basis of its failure to meet these additional requirements before the first day of the first calendar quarter beginning after the close of the first regular session of the State legislature that begins after the date of the enactment of this Act.