I 
109TH CONGRESS 
1ST SESSION 
H. R. 963 
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 
FEBRUARY 17, 2005 
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 sub-
sequently 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 Representa-
tives 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 
‘‘Children’s Compassionate Care Act of 2005’’. 
(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 EDU-
CATION 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 ‘el-
igible entity’ means a health care provider that is af-
filiated with an academic institution, that is pro-
viding comprehensive pediatric palliative care serv-
ices, alone or through an arrangement with another 
entity, and that has demonstrated experience in pro-
viding 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 condi-
tions; 
‘‘(B) pediatric hospices or hospices with 
significant pediatric palliative care programs; 
‘‘(C) home health agencies with a dem-
onstrated capacity to serve children with life- 
threatening conditions and that provide pedi-
atric palliative care; and 
‘‘(D) any other entity that the Secretary 
determines is appropriate. 
‘‘(2) 
LIFE-THREATENING
CONDITION
DE-
FINED.—In this subsection, the term ‘life-threat-
ening 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 Se-
curity 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 ter-
minally 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 award-
ed 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 pro-
viding such care; 
‘‘(2) provide consultative services and guidance 
to health care providers that are developing and 
building comprehensive pediatric palliative care pro-
grams; 
‘‘(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 pallia-
tive care; 
‘‘(5) facilitate the development, assessment, and 
implementation of clinical practice guidelines and in-
stitutional 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 2006 through 2010.’’. 
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 en-
tities to implement or expand pediatric palliative care pro-
grams 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 con-
ditions and their families; and 
‘‘(3) home health agencies with— 
‘‘(A) a demonstrated capacity and ability 
to care for children with life-threatening condi-
tions; and 
‘‘(B) expertise in providing palliative care. 
‘‘(c) AUTHORIZED ACTIVITIES.—Grant funds award-
ed under subsection (a) shall be used to— 
‘‘(1) create new pediatric palliative care pro-
grams; 
‘‘(2) start or expand needed additional care set-
tings, such as respite, hospice, inpatient day serv-
ices, 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 con-
taining such information as the Administrator may re-
quire. 
‘‘(e) AUTHORIZATION OF APPROPRIATIONS.—There 
are authorized to be appropriated to carry out this section 
$10,000,000 for each of fiscal years 2006 through 2010.’’. 
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. 404H. PEDIATRIC PALLIATIVE CARE TRAINING AND 
RESIDENCY GRANTS. 
‘‘(a) ESTABLISHMENT.—The Director of the Na-
tional Institutes of Health is authorized to award training 
grants to eligible entities to expand the number of physi-
cians, 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 2006 through 2010.’’. 
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 con-
taining such information as the Administrator may re-
quire. 
‘‘(d) AUTHORIZATION OF APPROPRIATIONS.—There 
are authorized to be appropriated to carry out this section 
$5,000,000 for each of fiscal years 2006 through 2010.’’. 
SEC. 105. RESEARCH. 
(a) PAIN AND SYMPTOM MANAGEMENT.—The Direc-
tor 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 re-
search to— 
(1) children’s hospitals or other hospitals serv-
ing a significant number of children with life-threat-
ening conditions; 
(2) pediatric departments of medical schools; 
(3) institutions currently participating in Na-
tional Institutes of Health network of pediatric 
pharmacological research units; and 
(4) hospices with pediatric palliative care pro-
grams 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 
PALLIA-
TIVE CARE DEMONSTRATION 
PROJECTS 
SEC. 201. MEDICARE PEDIATRIC PALLIATIVE CARE DEM-
ONSTRATION PROJECTS. 
(a) DEFINITIONS.—In this section: 
(1) CARE COORDINATION SERVICES.—The term 
‘‘care coordination services’’ means services that pro-
vide for the coordination of, and assistance with, re-
ferral for medical and other services, including mul-
tidisciplinary care conferences, coordination with 
other providers involved in care of the eligible child, 
patient and family caregiver education and coun-
seling, and such other services as the Secretary de-
termines 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 sub-
section (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 pro-
viding 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 coun-
seling) for the immediate family of eligible 
children; 
(II) provides for such care and serv-
ices in eligible children’s homes, on an out-
patient basis, and on a short-term inpa-
tient basis, directly or under arrangements 
made by the agency or organization, except 
that— 
(aa) the agency or organization 
must routinely provide directly sub-
stantially all of each of the services
described in subparagraphs (A), (C), 
and (H) of such section 1861(dd)(1); 
(bb) in the case of other services 
described in such section 1861(dd)(1) 
which are not provided directly by the 
agency or organization, the agency or 
organization must maintain profes-
sional management responsibility for 
all such services furnished to an eligi-
ble child, regardless of the location or 
facility in which such services are fur-
nished; and 
(III)(aa) identifies medical, commu-
nity, and social service needs; 
(bb) simplifies access to service; 
(cc) uses the full range of community 
resources, including the friends and family 
of the eligible child; and 
(dd) provides educational opportuni-
ties relating to health care; and 
(ii) has an interdisciplinary group of 
personnel which— 
(I) includes at least— 
(aa) 1 physician (as defined 
in section 1861(r)(1) of the So-