Home > 105th Congressional Bills > H.R. 3128 (ih) To amend title XVIII of the Social Security Act with respect to restrictions on changes in benefits under Medicare+Choice plans. ...

H.R. 3128 (ih) To amend title XVIII of the Social Security Act with respect to restrictions on changes in benefits under Medicare+Choice plans. ...


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108th CONGRESS
  1st Session
                                H. R. 3127

  To improve the palliative and end-of-life care provided to children 
       with life-threatening conditions, and for other purposes.


_______________________________________________________________________


                    IN THE HOUSE OF REPRESENTATIVES

                           September 17, 2003

Ms. Pryce of Ohio (for herself and Mr. Murtha) introduced the following 
 bill; which was referred to the Committee on Energy and Commerce, and 
  in addition to the Committee on Ways and Means, for a period to be 
subsequently determined by the Speaker, in each case for consideration 
  of such provisions as fall within the jurisdiction of the committee 
                               concerned

_______________________________________________________________________

                                 A BILL


 
  To improve the palliative and end-of-life care provided to children 
       with life-threatening conditions, and for other purposes.

    Be it enacted by the Senate and House of Representatives of the 
United States of America in Congress assembled,

SECTION 1. SHORT TITLE; TABLE OF CONTENTS.

    (a) Short Title.--This Act may be cited as the ``Pediatric 
Palliative Care Act of 2003''.
    (b) Table of Contents.--The table of contents of this Act is as 
follows:

Sec. 1. Short title; table of contents.
   TITLE I--GRANTS TO EXPAND PEDIATRIC PALLIATIVE CARE SERVICES AND 
                                RESEARCH

Sec. 101. Education and training.
Sec. 102. Grants to expand pediatric palliative care.
Sec. 103. Health professions fellowships and residency grants.
Sec. 104. Model program grants.
Sec. 105. Research.
       TITLE II--PEDIATRIC PALLIATIVE CARE DEMONSTRATION PROJECTS

Sec. 201. Medicare pediatric palliative care demonstration projects.
Sec. 202. Private sector pediatric palliative care demonstration 
                            projects.
Sec. 203. Authorization of appropriations.

   TITLE I--GRANTS TO EXPAND PEDIATRIC PALLIATIVE CARE SERVICES AND 
                                RESEARCH

SEC. 101. EDUCATION AND TRAINING.

    Subpart 2 of part E of title VII of the Public Health Service Act 
(42 U.S.C. 295 et seq.) is amended--
            (1) in section 770(a) by inserting ``except for section 
        771,'' after ``carrying out this subpart''; and
            (2) by adding at the end the following:

``SEC. 771. PEDIATRIC PALLIATIVE CARE SERVICES EDUCATION AND TRAINING.

    ``(a) Establishment.--The Secretary may award grants to eligible 
entities to provide training in pediatric palliative care and related 
services.
    ``(b) Eligible Entity Defined.--
            ``(1) In general.--In this section the term `eligible 
        entity' means a health care provider that is affiliated with an 
        academic institution, that is providing comprehensive pediatric 
        palliative care services, alone or through an arrangement with 
        another entity, and that has demonstrated experience in 
        providing training and consultative services in pediatric 
        palliative care including--
                    ``(A) children's hospitals or other hospitals or 
                medical centers with significant capacity in caring for 
                children with life-threatening conditions;
                    ``(B) pediatric hospices or hospices with 
                significant pediatric palliative care programs;
                    ``(C) home health agencies with a demonstrated 
                capacity to serve children with life-threatening 
                conditions and that provide pediatric palliative care; 
                and
                    ``(D) any other entity that the Secretary 
                determines is appropriate.
            ``(2) Life-threatening condition defined.--In this 
        subsection, the term `life-threatening condition' has the 
        meaning given such term by the Secretary (in consultation with 
        hospice programs (as defined in section 1861(dd)(2) of the 
        Social Security Act (42 U.S.C. 1395x(dd)(2))) and academic 
        experts in end-of-life care), except that the Secretary may not 
        limit such term to individuals who are terminally ill (as 
        defined in section 1861(dd)(3) of the Social Security Act (42 
        U.S.C. 1395x(dd)(3))).
    ``(c) Authorized Activities.--Grant funds awarded under subsection 
(a) shall be used to--
            ``(1) provide short-term training and education programs in 
        pediatric palliative care for the range of interdisciplinary 
        health professionals and others providing such care;
            ``(2) provide consultative services and guidance to health 
        care providers that are developing and building comprehensive 
        pediatric palliative care programs;
            ``(3) develop regional information outreach and other 
        resources to assist clinicians and families in local and 
        outlying communities and rural areas;
            ``(4) develop or evaluate current curricula and educational 
        materials being used in providing such education and guidance 
        relating to pediatric palliative care;
            ``(5) facilitate the development, assessment, and 
        implementation of clinical practice guidelines and 
        institutional protocols and procedures for pediatric 
        palliative, end-of-life, and bereavement care; and
            ``(6) assure that families of children with life-
        threatening conditions are an integral part of these processes.
    ``(d) Authorization of Appropriations.--There are authorized to be 
appropriated to carry out this section $5,000,000 for each of fiscal 
years 2004 through 2008.''.

SEC. 102. GRANTS TO EXPAND PEDIATRIC PALLIATIVE CARE.

    Part Q of title III of the Public Health Service Act (42 U.S.C. 
280h et seq.) is amended by adding at the end the following:

``SEC. 399Z-1. GRANTS TO EXPAND PEDIATRIC PALLIATIVE CARE.

    ``(a) Establishment.--The Secretary, acting through the 
Administrator of the Health Resources and Services Administration may 
award grants to eligible entities to implement or expand pediatric 
palliative care programs for children with life-threatening conditions.
    ``(b) Eligible Entity Defined.--In this section, the term `eligible 
entity' means--
            ``(1) children's hospitals or other hospitals with a 
        capacity and ability to care for children with life-threatening 
        conditions;
            ``(2) hospices with a demonstrated capacity and ability to 
        care for children with life-threatening conditions and their 
        families; and
            ``(3) home health agencies with--
                    ``(A) a demonstrated capacity and ability to care 
                for children with life-threatening conditions; and
                    ``(B) expertise in providing palliative care.
    ``(c) Authorized Activities.--Grant funds awarded under subsection 
(a) shall be used to--
            ``(1) create new pediatric palliative care programs;
            ``(2) start or expand needed additional care settings, such 
        as respite, hospice, inpatient day services, or other care 
        settings to provide a continuum of care across inpatient, home, 
        and community-based settings;
            ``(3) expand comprehensive pediatric palliative care 
        services, including care coordination services, to greater 
        numbers of children and broader service areas, including 
        regional and rural outreach; and
            ``(4) support communication linkages and care coordination, 
        telemedicine and teleconferencing, and measures to improve 
        patient safety.
    ``(d) Application.--Each eligible entity desiring a grant under 
this section shall submit an application to the Administrator at such 
time, in such manner, and containing such information as the 
Administrator may require.
    ``(e) Authorization of Appropriations.--There are authorized to be 
appropriated to carry out this section $10,000,000 for each of fiscal 
years 2004 through 2008.''.

SEC. 103. PEDIATRIC PALLIATIVE CARE TRAINING AND RESIDENCY GRANTS.

    Part A of title IV of the Public Health Service Act (42 U.S.C. 281 
et seq.) is amended by adding at the end the following:

``SEC. 404F. PEDIATRIC PALLIATIVE CARE TRAINING AND RESIDENCY GRANTS.

    ``(a) Establishment.--The Director of the National Institutes of 
Health is authorized to award training grants to eligible entities to 
expand the number of physicians, nurses, mental health professionals, 
and appropriate allied health professionals and specialists (as 
determined by the Secretary) with pediatric palliative clinical 
training and research experience.
    ``(b) Eligible Entity Defined.--In this section, the term `eligible 
entity' means--
            ``(1) a pediatric department of a medical school and other 
        related departments including--
                    ``(A) oncology;
                    ``(B) virology;
                    ``(C) neurology; and
                    ``(D) psychiatry;
            ``(2) a school of nursing;
            ``(3) a school of psychology and social work; and
            ``(4) a children's hospital or other hospital with a 
        significant number of pediatric patients with life-threatening 
        conditions.
    ``(c) Application.--Each eligible entity desiring a grant under 
this section shall submit an application to the Director at such time, 
in such manner, and containing such information as the Director may 
require.
    ``(d) Authorization of Appropriations.--There are authorized to be 
appropriated to carry out this section $5,000,000 for each of fiscal 
years 2004 through 2008.''.

SEC. 104. MODEL PROGRAM GRANTS.

    Part Q of title III of the Public Health Service Act (42 U.S.C. 
280h et seq.), as amended by section 102, is further amended by adding 
at the end the following:

``SEC. 399Z-2. MODEL PROGRAM GRANTS.

    ``(a) Establishment.--The Secretary may award grants to eligible 
entities to enhance pediatric palliative care and care for children 
with life-threatening conditions in general pediatric or family 
practice residency training programs through the development of model 
programs.
    ``(b) Eligible Entity Defined.--In this section the term `eligible 
entity' means a pediatric department of--
            ``(1) a medical school;
            ``(2) a children's hospital; or
            ``(3) any other hospital with a general pediatric or family 
        practice residency program that serves a significant number of 
        pediatric patients with life-threatening conditions.
    ``(c) Application.--Each eligible entity desiring a grant under 
this section shall submit an application to the Administrator at such 
time, in such manner, and containing such information as the 
Administrator may require.
    ``(d) Authorization of Appropriations.--There are authorized to be 
appropriated to carry out this section $5,000,000 for each of fiscal 
years 2004 through 2008.''.

SEC. 105. RESEARCH.

    (a) Pain and Symptom Management.--The Director of the National 
Institutes of Health (in this section referred to as the ``Director'') 
shall provide translational research grants to fund research in 
pediatric pain and symptom management that will utilize existing 
facilities of the National Institutes of Health including--
            (1) pediatric pharmacological research units;
            (2) the general clinical research centers; and
            (3) other centers providing infrastructure for patient 
        oriented research.
    (b) Eligible Entities.--In carrying out subsection (a), the 
Director may award grants for the conduct of research to--
            (1) children's hospitals or other hospitals serving a 
        significant number of children with life-threatening 
        conditions;
            (2) pediatric departments of medical schools;
            (3) institutions currently participating in National 
        Institutes of Health network of pediatric pharmacological 
        research units; and
            (4) hospices with pediatric palliative care programs and 
        academic affiliations.
    (c) Authorization of Appropriations.--There are authorized to be 
appropriated to carry out this section $10,000,000, to remain available 
until expended.

       TITLE II--PEDIATRIC PALLIATIVE CARE DEMONSTRATION PROJECTS

SEC. 201. MEDICARE PEDIATRIC PALLIATIVE CARE DEMONSTRATION PROJECTS.

    (a) Definitions.--In this section:
            (1) Care coordination services.--The term ``care 
        coordination services'' means services that provide for the 
        coordination of, and assistance with, referral for medical and 
        other services, including multidisciplinary care conferences, 
        coordination with other providers involved in care of the 
        eligible child, patient and family caregiver education and 
        counseling, and such other services as the Secretary determines 
        to be appropriate in order to facilitate the coordination and 
        continuity of care furnished to an individual.
            (2) Demonstration project.--The term ``demonstration 
        project'' means a demonstration project established by the 
        Secretary under subsection (b)(1).
            (3) Eligible child.--The term ``eligible child'' means an 
        individual with a life-threatening condition who is entitled to 
        benefits under part A of the medicare program and who is under 
        18 years of age.
            (4) Eligible provider.--The term ``eligible provider'' 
        means--
                    (A) a pediatric palliative care program that is a 
                public agency or private organization (or a subdivision 
                thereof) which--
                            (i)(I) is primarily engaged in providing 
                        the care and services described in section 
                        1861(dd)(1) of the Social Security Act (42 
                        U.S.C. 1395(dd)(1)) and makes such services 
                        available (as needed) on a 24-hour basis and 
                        which also provides counseling (including 
                        bereavement counseling) for the immediate 
                        family of eligible children;
                            (II) provides for such care and services in 

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