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 interdisciplinary 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 pallia-
tive care; 
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‘‘(5) facilitate the development, assessment, and 
implementation of evidence-based (when available) 
and best practices (as available) clinical practice 
guidelines and institutional protocols and procedures 
for pediatric palliative, pain management, end-of-life, 
supportive, and bereavement care; and 
‘‘(6) assure that children with life-threatening 
conditions and the families of such children are an 
integral part of these family-centered processes. 
‘‘(d) AUTHORIZATION OF APPROPRIATIONS.—There 
are authorized to be appropriated to carry out this section 
$5,000,000 for each of fiscal years 2008 through 2012.’’. 
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. 
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‘‘(b) ELIGIBLE ENTITY DEFINED.—In this section, 
the term ‘eligible entity’ means— 
‘‘(1) children’s hospitals or other hospitals with 
a capacity (or those developing a capacity) and abil-
ity to care for children with life-threatening condi-
tions; 
‘‘(2) hospices with a demonstrated or devel-
oping capacity and ability to provide palliative care 
(including symptom management, assistance with 
and support in decisionmaking) for children with 
life-threatening conditions and their families in a 
family-centered manner; and 
‘‘(3) home health agencies with— 
‘‘(A) a demonstrated capacity (or devel-
oping capacity) and ability to care for children 
with life-threatening conditions; and 
‘‘(B) demonstrated expertise (or actively 
developing capacity) in providing pediatric pal-
liative care. 
‘‘(c) AUTHORIZED ACTIVITIES.—Grant funds award-
ed under subsection (a) shall be used to— 
‘‘(1) create new or expand existing pediatric 
palliative care programs; 
‘‘(2) start or expand needed additional care set-
tings, such as respite, hospice, outpatient, inpatient 
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day services, or other care settings to provide a con-
tinuum of care across inpatient, home, and commu-
nity-based settings for pediatric palliative care; 
‘‘(3) expand comprehensive pediatric palliative 
care services, including care coordination services, to 
greater numbers of children with life-threatening 
conditions and broader service areas, including re-
gional and rural outreach; and 
‘‘(4) support communication linkages and care 
coordination, applying telemedicine and teleconfer-
encing technologies, and measures to improve both 
patient and family safety, and measures to improve 
efficacy and quality. 
‘‘(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 2008 through 2012.’’. 
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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. 404I. 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 interdisciplinary 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; 
‘‘(D) psychiatry; or 
‘‘(E) pain medicine; 
‘‘(2) a school of nursing (when partnering with 
physicians or a provider eligible to receive payments 
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under title XVIII of the Social Security Act (42 
U.S.C. 1395 et seq.), as available); 
‘‘(3) a school of psychology (when partnering 
with physicians or a provider eligible to receive pay-
ments under title XVIII of the Social Security Act 
(42 U.S.C. 1395 et seq.), as available); 
‘‘(4) a school of social work (when partnering 
with physicians or a provider eligible to receive pay-
ments under title XVIII of the Social Security Act 
(42 U.S.C. 1395 et seq.), as available); 
‘‘(5) a children’s hospital or other hospital with 
demonstrated expertise or developing capacity to 
serve pediatric patients with life-threatening condi-
tions; and 
‘‘(6) an entity that has access to a continuum 
of care such as acute care, inpatient, hospice, out-
patient, or home-based hospice to fully expose the 
trainee to palliative care. 
‘‘(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. Such appli-
cation shall include a plan for evaluating outcomes. 
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‘‘(d) AUTHORIZATION OF APPROPRIATIONS.—There 
are authorized to be appropriated to carry out this section 
$5,000,000 for each of fiscal years 2008 through 2012.’’. 
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 and general or pediatric nursing education pro-
grams through the development of model interdisciplinary 
programs that partner with other health professional 
schools such as psychology, pharmacology, nursing, or so-
cial work, when practicable. 
‘‘(b) ELIGIBLE ENTITY DEFINED.—In this section, 
the term ‘eligible entity’ means a provider eligible to re-
ceive payments under title XVIII of the Social Security 
Act (42 U.S.C. 1395 et seq.), in either a pediatric depart-
ment of— 
‘‘(1) a medical school; 
‘‘(2) a nursing school; 
‘‘(3) a children’s hospital; or 
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‘‘(4) any other hospital with a general pediatric 
or family practice residency program serving pedi-
atric 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 require 
(including a plan for evaluating outcomes). 
‘‘(d) AUTHORIZATION OF APPROPRIATIONS.—There 
are authorized to be appropriated to carry out this section 
$5,000,000 for each of fiscal years 2008 through 2012.’’. 
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 research 
grants to fund interdisciplinary research in pediatric pain 
and symptom management that will utilize existing facili-
ties of the National Institutes of Health including— 
(1) pediatric pharmacological research units; 
(2) clinical translational science awardees; 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 pe-
diatric pain and symptom management research to— 
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(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) pediatric departments of nursing schools; 
(4) institutions currently participating in Na-
tional Institutes of Health network of pediatric 
pharmacological research units; 
(5) hospices with pediatric palliative care pro-
grams and academic affiliations; 
(6) pediatric departments of social work 
schools; 
(7) pediatric departments of psychology schools; 
(8) pediatric departments of pharmacology 
schools; and 
(9) pediatric pain medicine programs. 
(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: 
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(1) CARE COORDINATION SERVICES.—The term 
‘‘care coordination services’’ means services that pro-
vide for the coordination of, and assistance with, re-
ferral for clinical and other services, including inter-
disciplinary care conferences, coordination with other 
providers involved in caring for the eligible child 
with a life-threatening condition, patient and family- 
centered 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 eligible child 
and the family of such child. 
(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 21 years of 
age. 
(4) ELIGIBLE PROVIDER.—The term ‘‘eligible 
provider’’ means— 
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(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 fam-
ily-centered counseling (including sup-
portive and bereavement counseling) for 
the eligible child and the immediate family 
of such child; 
(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); 
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(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 and the family of such child, 
regardless of the location or facility in 
which such services are furnished; 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-
cial Security Act (42 U.S.C. 
1395x(r)(1))); 
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(bb) 1 registered profes-
sional nurse; 
(cc) 1 licensed mental health 
professional; and 
(dd) 1 licensed social work-
er; 
employed by or, in the case of a physi-
cian described in item (aa), under 
contract with the agency or organiza-
tion; 
(II) provides (or supervises the provi-
sion of) the care and services described in 
such section 1861(dd)(1); and 
(III) establishes the policies governing 
the provision of such care and services; 
(iii) maintains central clinical records 
on all patients; 
(iv) does not discontinue the palliative 
care it provides with respect to an eligible 
child and the family of such child because 
of the inability of the eligible child to pay 
for such care; 
(v)(I) uses volunteers in its provision 
of care and services in accordance with 
standards set by the Secretary, which 
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standards shall ensure a continuing level of 
effort to use such volunteers; and 
(II) maintains records on the use of 
these volunteers and the cost savings and 
expansion of care and services achieved 
through the use of these volunteers; 
(vi) in the case of an agency or orga-
nization in any State in which State or ap-
plicable local law provides for the licensing 
of agencies or organizations of this nature, 
is licensed pursuant to such law; 
(vii) seeks to ensure that eligible chil-
dren and their families receive complete, 
timely, understandable information about 
diagnosis, prognosis, treatments, and pal-
liative care options; 
(viii) seeks to ensure access to routine 
pediatric care as appropriate for the eligi-
ble child; 
(ix) ensures that children and their 
families participate in effective and timely 
prevention, assessment, and treatment of 
physical and psychological symptoms of 
distress; and 
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(x) meets such other requirements as 
the Secretary may find necessary in the in-
terest of the health and safety of the eligi-
ble children who are provided with pallia-
tive care by such agency or organization; 
and 
(B) any other individual or entity with an 
agreement under section 1866 of the Social Se-
curity Act (42 U.S.C. 1395cc) that— 
(i) has demonstrated expertise in pro-
viding palliative care to pediatric popu-
lations; and 
(ii) the Secretary determines is appro-
priate. 
(5) LIFE-THREATENING CONDITION.—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))). 
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(6) MEDICARE PROGRAM.—The term ‘‘Medicare 
program’’ means the health benefits program under 
title XVIII of the Social Security Act (42 U.S.C. 
1395 et seq.). 
(7) SECRETARY.—The term ‘‘Secretary’’ means 
the Secretary of Health and Human Services. 
(b) PEDIATRIC PALLIATIVE CARE DEMONSTRATION 
PROJECTS.— 
(1) ESTABLISHMENT.—The Secretary shall es-
tablish demonstration projects in accordance with 
the provisions of this subsection to provide pediatric 
palliative care to eligible children. 
(2) PARTICIPATION.— 
(A) ELIGIBLE
PROVIDERS.—Any eligible 
provider may furnish items or services covered 
under the pediatric palliative care benefit. 
(B) ELIGIBLE CHILDREN.—The Secretary 
shall permit any eligible child residing in the 
service area of an eligible provider participating 
in a demonstration project to participate in 
such project on a voluntary basis. 
(c) 
SERVICES
UNDER
DEMONSTRATION 
PROJECTS.— 
(1) IN
GENERAL.—Except as otherwise pro-
vided in this subsection, the provisions of section 
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1814(i) of the Social Security Act (42 U.S.C. 
1395f(i)) shall apply to the payment for pediatric 
palliative care provided under the demonstration 
projects in the same manner in which such section 
applies to the payment for hospice care (as defined 
in section 1861(dd)(1) of the Social Security Act (42 
U.S.C. 1395x(dd)(1))) provided under the Medicare 
program. 
(2) COVERAGE
OF
PEDIATRIC
PALLIATIVE 
CARE.— 
(A) IN
GENERAL.—Notwithstanding sec-
tion 1862(a)(1)(C) of the Social Security Act 
(42 U.S.C. 1395y(a)(1)(C)), the Secretary shall 
provide for reimbursement for items and serv-
ices provided under the pediatric palliative care 
benefit made available under the demonstration 
projects in a manner that is consistent with the 
requirements of subparagraph (B). 
(B) BENEFIT.—Under the pediatric pallia-
tive care benefit, the following requirements 
shall apply: 
(i) WAIVER
OF
REQUIREMENT
TO 
ELECT HOSPICE CARE.—Each eligible child 
may receive benefits without an election 
under section 1812(d)(1) of the Social Se-
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curity Act (42 U.S.C. 1395d(d)(1)) to re-
ceive hospice care (as defined in section 
1861(dd)(1) of such Act (42 U.S.C. 
1395x(dd)(1))) having been made with re-
spect to the eligible child. 
(ii) AUTHORIZATION
FOR
CURATIVE 
TREATMENT.—Each eligible child may con-
tinue to receive benefits for disease and 
symptom modifying treatment under the 
Medicare program. 
(iii) PROVISION OF CARE COORDINA-
TION SERVICES.—Each eligible child shall 
receive care coordination services (as de-
fined in subsection (a)(1)) and hospice 
care (as so defined) through an eligible 
provider participating in a demonstration 
project, regardless of whether such indi-
vidual has been determined to be termi-
nally ill (as defined in section 1861(dd)(3) 
of the Social Security Act (42 U.S.C. 
1395x(dd)(3))). 
(iv) AVAILABILITY
OF
INFORMATION 
ON
PEDIATRIC
PALLIATIVE
CARE.—Each 
eligible child and the family of such child 
shall receive information and education in 
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order to better understand the utility of 
pediatric palliative care. 
(v) AVAILABILITY
OF
SUPPORTIVE 
AND
BEREAVEMENT
COUNSELING.—Each 
eligible child and the family of such child 
shall receive supportive counseling and be-
reavement counseling, if appropriate. 
(vi) 
PROVISION
OF
INDIVIDUAL 
CARE.—Each eligible child and the family 
of such child shall receive appropriate care 
that is— 
(I) designed to fit the child’s 
physical, cognitive, emotional, and 
spiritual level of development that 
shall involve and respect both the 
child and the family of such child; and 
(II) effective and compassionate 
from diagnosis through death and be-
reavement. 
(vii) PROFESSIONAL
EDUCATION.— 
Each professional caring for an eligible 
child shall have special responsibilities for 
educating themself and others about the 
identification, management, and discussion 
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of the last phase of a child’s fatal medical 
problem. 
(viii) ADDITIONAL BENEFITS.—Under 
the demonstration projects, the Secretary 
may include any other item or service— 
(I) for which payment may other-
wise be made under the Medicare pro-
gram; and 
(II) that is consistent with the 
recommendations contained in the re-
port published in 2003 by the Insti-
tute of Medicine of the National 
Academy of Sciences entitled ‘‘When 
Children Die: Improving Palliative 
and End-of-Life Care for Children 
and Their Families’’. 
(C) PAYMENT.— 
(i) ESTABLISHMENT
OF
PAYMENT 
METHODOLOGY.—The Secretary shall es-
tablish a methodology for determining the 
amount of payment for pediatric palliative 
care furnished under the demonstration 
projects that is similar to the methodology 
for determining the amount of payment for 
hospice 
care 
(as 
defined 
in 
section 
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1861(dd)(1) of the Social Security Act (42 
U.S.C. 
1395x(dd)(1))) 
under 
section 
1814(i) of such Act (42 U.S.C. 1395f(i)), 
except as provided in the following sub-
clauses: 
(I) AMOUNT OF PAYMENT.—Sub-
ject to subclauses (II) and (III), the 
amount of payment for pediatric pal-
liative care shall be equal to the 
amount that would be paid for hospice 
care (as so defined), increased by an 
appropriate percentage to account for 
the additional costs of providing sup-
portive and bereavement counseling 
and care coordination services (as de-
fined in subsection (a)(1)). 
(II) WAIVER OF HOSPICE CAP.— 
The 
limitation 
under 
section 
1814(i)(2) of the Social Security Act 
(42 U.S.C. 1395f(i)(2)) shall not 
apply with respect to pediatric pallia-
tive care and amounts paid for pedi-
atric palliative care under this sub-
paragraph 
shall 
not 
be 
counted 
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against the cap amount described in 
such section. 
(III) SEPARATE
PAYMENT
FOR 
COUNSELING
SERVICES.—Notwith-
standing section 1814(i)(1)(A) of the 
Social 
Security 
Act 
(42 
U.S.C. 
1395f(i)(1)(A)), the Secretary may 
pay for bereavement counseling as a 
separate service. 
(ii) SPECIAL RULES FOR PAYMENT OF 
MEDICARE+CHOICE ORGANIZATIONS.—The 
Secretary shall establish procedures under 
which the Secretary provides for an appro-
priate adjustment in the monthly payments 
made under section 1853 of the Social Se-
curity Act (42 U.S.C. 1395w–23) to any 
Medicare+Choice organization that pro-
vides health care items or services to an el-
igible child who is participating in a dem-
onstration project. 
(3) COVERAGE OF PEDIATRIC PALLIATIVE CARE 
CONSULTATION
SERVICES.—Under the demonstra-
tion projects, the Secretary shall provide for a one- 
time payment on behalf of each eligible child who 
has not yet elected to participate in the demonstra-
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tion project for services that are furnished by a phy-
sician or advanced practice registered nurse who is 
either the medical or nursing director or an em-
ployee of a provider eligible to receive payments 
under title XVIII of the Social Security Act (42 
U.S.C. 1395 et seq.) participating in such a project 
and that consist of— 
(A) an evaluation of the individual’s need 
for pain and symptom management, including 
the need for pediatric palliative care; 
(B) counseling the individual and the fam-
ily of such individual with respect to the bene-
fits of pediatric palliative care and care options; 
(C) if appropriate, advising the individual 
and the family of such individual regarding ad-
vanced care planning; and 
(D) care coordination. 
(d) CONDUCT OF DEMONSTRATION PROJECTS.— 
(1) SITES.—The Secretary shall conduct dem-
onstration projects in not less than 4, but not more 
than 8, sites. 
(2) SELECTION OF SITES.—The Secretary shall 
select demonstration sites on the basis of proposals 
submitted under paragraph (3) that are located in 
geographic areas that— 
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(A) include both urban and rural eligible 
organizations; 
(B) are geographically diverse and readily 
accessible to eligible children; and 
(C) take into account adequate representa-
tion of children of ethnic and racial minorities. 
(3) PROPOSALS.—The Secretary shall accept 
proposals to furnish pediatric palliative care under 
the demonstration projects from any eligible provider 
at such time, in such manner, and in such form as 
the Secretary may reasonably require. 
(4) FACILITATION OF EVALUATION.—The Sec-
retary shall design the demonstration projects to fa-
cilitate the evaluation conducted under subsection 
(e)(1). 
(5) DURATION.—The Secretary shall complete 
the demonstration projects within a period of 5 
years that includes a period of 1 year during which 
the Secretary shall complete the evaluation under 
section 204. 
(e) WAIVER
OF MEDICARE REQUIREMENTS.—The 
Secretary shall waive compliance with such requirements 
of the Medicare program to the extent and for the period 
the Secretary finds necessary to conduct the demonstra-
tion projects. 
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SEC. 202. PRIVATE SECTOR PEDIATRIC PALLIATIVE CARE 
DEMONSTRATION PROJECTS. 
(a) DEFINITIONS.—In this section: 
(1) CARE COORDINATION SERVICES.—The term 
‘‘care coordination services’’ has the meaning given 
the term in section 201. 
(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— 
(A) under 21 years of age; 
(B) enrolled for health benefits coverage 
under an eligible health plan; and 
(C) not enrolled under (or entitled to) ben-
efits under a health plan described in para-
graph (5)(C). 
(4) ELIGIBLE PROVIDER.—The term ‘‘eligible 
provider’’ has the meaning given the term in section 
201. 
(5) ELIGIBLE HEALTH PLAN.— 
(A) IN
GENERAL.—Subject to subpara-
graphs (B) and (C), the term ‘‘eligible health 
plan’’ means an individual or group plan that 
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provides, or pays the cost of, medical care (as 
such term is defined in section 2791 of the 
Public Health Service Act (42 U.S.C. 300gg– 
91)). 
(B) TYPES
OF
PLANS
INCLUDED.—For 
purposes of subparagraph (A), the term ‘‘eligi-
ble health plan’’ includes the following health 
plans, and any combination thereof: 
(i) A group health plan (as defined in 
section 2791(a) of the Public Health Serv-
ice Act (42 U.S.C. 300gg–91(a))), but only 
if the plan— 
(I) has 50 or more participants 
(as defined in section 3(7) of the Em-
ployee Retirement Income Security 
Act of 1974 (29 U.S.C. 1002(7))); or 
(II) is administered by an entity 
other than the employer who estab-
lished and maintains the plan. 
(ii) A health insurance issuer (as de-
fined in section 2791(b) of the Public 
Health Service Act (42 U.S.C. 300gg– 
91(b))). 
(iii) A health maintenance organiza-
tion (as defined in section 2791(b) of the 
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Public Health Service Act (42 U.S.C. 
300gg–91(b))). 
(iv) A long-term care policy, including 
a nursing home fixed indemnity policy (un-
less the Secretary determines that such a 
policy does not provide sufficiently com-
prehensive coverage of a benefit so that the 
policy should be treated as a health plan). 
(v) An employee welfare benefit plan 
or any other arrangement which is estab-
lished or maintained for the purpose of of-
fering or providing health benefits to the 
employees of 2 or more employers. 
(vi) Health benefits coverage provided 
under a contract under the Federal em-
ployees health benefits program under 
chapter 89 of title 5, United States Code. 
(C) TYPES
OF
PLANS
EXCLUDED.—For 
purposes of subparagraph (A), the term ‘‘eligi-
ble health plan’’ does not include any of the fol-
lowing health plans: 
(i) The Medicare program under title 
XVIII of the Social Security Act (42 
U.S.C. 1395 et seq.). 
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(ii) The Medicaid program under title 
XIX of the Social Security Act (42 U.S.C. 
1396 et seq.). 
(iii) A Medicare supplemental policy 
(as defined in section 1882(g)(1) of the 
Social Security Act (42 U.S.C. 1395ss et 
seq.). 
(iv) The health care program for ac-
tive military personnel under title 10, 
United States Code. 
(v) The veterans health care program 
under chapter 17 of title 38, United States 
Code. 
(vi) The Civilian Health and Medical 
Program 
of 
the 
Uniformed 
Services 
(CHAMPUS), 
as 
defined 
in 
section 
1072(4) of title 10, United States Code. 
(vii) The Indian health service pro-
gram under the Indian Health Care Im-
provement Act (25 U.S.C. 1601 et seq.). 
(6) ELIGIBLE ORGANIZATION.—The term ‘‘eligi-
ble organization’’ means an organization that pro-
vides health benefits coverage under an eligible 
health plan. 
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(7) LIFE-THREATENING CONDITION.—The term 
‘‘life-threatening condition’’ has the meaning given 
the term in section 201. 
(8) MEDICARE PROGRAM.—The term ‘‘Medicare 
program’’ means the health benefits program under 
title XVIII of the Social Security Act (42 U.S.C. 
1395 et seq.). 
(9) PEDIATRIC PALLIATIVE CARE.—The term 
‘‘pediatric palliative care’’ means services of the type 
to be furnished under the demonstration projects 
under section 201, including care coordination serv-
ices. 
(10) PEDIATRIC PALLIATIVE CARE CONSULTA-
TION SERVICES.—The term ‘‘pediatric palliative care 
consultation services’’ means services of the type de-
scribed in section 201(c)(3). 
(11) 
SECRETARY.—The 
term 
‘‘Secretary’’ 
means the Secretary of Health and Human Services, 
acting through the Director of the Agency for 
Healthcare Research and Quality. 
(b) NONMEDICARE PEDIATRIC PALLIATIVE CARE 
DEMONSTRATION PROJECTS.— 
(1) ESTABLISHMENT.—The Secretary shall es-
tablish demonstration projects under this section at 
the same time as the Secretary establishes the dem-
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onstration projects under section 201 and in accord-
ance with the provisions of this subsection to dem-
onstrate the provision of pediatric palliative care and 
pediatric palliative care consultation services to eligi-
ble children who are not entitled to (or enrolled for) 
coverage under the health plans described in sub-
section (a)(3)(C). 
(2) PARTICIPATION.— 
(A) ELIGIBLE ORGANIZATIONS.—The Sec-
retary shall permit any eligible organization to 
participate in a demonstration project on a vol-
untary basis. 
(B) ELIGIBLE CHILDREN.—Any eligible or-
ganization participating in a demonstration 
project shall permit any eligible child enrolled in 
an eligible health plan offered by the organiza-
tion to participate in such project on a vol-
untary basis. 
(c) 
SERVICES
UNDER
DEMONSTRATION 
PROJECTS.— 
(1) PROVISION OF PEDIATRIC PALLIATIVE CARE 
AND
CONSULTATION
SERVICES.—Under a dem-
onstration project, each eligible organization electing 
to participate in the demonstration project shall pro-
vide pediatric palliative care and pediatric palliative 
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care consultation services to each eligible child who 
is enrolled with the organization and who elects to 
participate in the demonstration project. Under the 
pediatric palliative care benefit, the following re-
quirements shall apply: 
(A) WAIVER OF REQUIREMENT TO ELECT 
HOSPICE CARE.—Each eligible child may receive 
benefits without an election under section 
1812(d)(1) of the Social Security Act (42 
U.S.C. 1395d(d)(1)) to receive hospice care (as 
defined in section 1861(dd)(1) of such Act (42 
U.S.C. 1395x(dd)(1))) having been made with 
respect to the eligible child. 
(B) 
AUTHORIZATION
FOR
CURATIVE 
TREATMENT.—Each eligible child may continue 
to receive benefits for disease and symptom 
modifying treatment under the Medicare pro-
gram. 
(C) PROVISION
OF
CARE
COORDINATION 
SERVICES.—Each eligible child shall receive 
care coordination services (as defined in sub-
section (a)(1)) and hospice care (as so defined) 
through an eligible provider participating in a 
demonstration project, regardless of whether 
such individual has been determined to be ter-
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minally ill (as defined in section 1861(dd)(3) of 
the 
Social 
Security 
Act 
(42 
U.S.C. 
1395x(dd)(3))). 
(D) AVAILABILITY
OF
INFORMATION
ON 
PEDIATRIC
PALLIATIVE
CARE.—Each eligible 
child and the family of such child shall receive 
information and education in order to better 
understand the utility of pediatric palliative 
care. 
(E) AVAILABILITY
OF
SUPPORTIVE
AND 
BEREAVEMENT
COUNSELING.—Each 
eligible 
child and the family of such child shall receive 
supportive counseling and bereavement coun-
seling, if appropriate. 
(F) PROVISION
OF
INDIVIDUAL
CARE.— 
Each eligible child and the family of such child 
shall receive appropriate care— 
(i) that is designed to fit the child’s 
physical, cognitive, emotional, and spiritual 
level of development that shall involve and 
respect both the child and the family of 
such child; 
(ii) that is effective and compas-
sionate from diagnosis through death and 
bereavement; 
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(iii) that involves and respects both 
the eligible child and the family of the eli-
gible child; and 
(iv) in which the family of the eligible 
child is a part of the care team. 
(G) 
PROFESSIONAL
EDUCATION.—Each 
professional caring for an eligible child shall 
have 
special 
responsibilities 
for 
educating 
themself and others about the identification, 
management, and discussion of the last phase 
of a child’s fatal medical problem. 
(H) ADDITIONAL
BENEFITS.—Under the 
demonstration projects, the Secretary may in-
clude any other item or service that is con-
sistent with the recommendations contained in 
the report published in 2003 by the Institute of 
Medicine of the National Academy of Sciences 
entitled ‘‘When Children Die: Improving Pallia-
tive and End-of-Life Care for Children and 
Their Families’’. 
(2) 
AVAILABILITY
OF
ADMINISTRATIVE 
GRANTS.— 
(A) IN
GENERAL.—Subject to subpara-
graph (B), the Secretary shall award grants to 
eligible organizations electing to participate in a 
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demonstration project for the administrative 
costs incurred by the eligible organization in 
participating in the demonstration project (in-
cluding care coordination), including the costs 
of collecting and submitting the data required 
to be submitted under subsection (d)(4)(B). 
(B) NO
PAYMENT
FOR
SERVICES.—The 
Secretary may not pay eligible organizations for 
pediatric palliative care or pediatric palliative 
care consultation services furnished under the 
demonstration projects. 
(d) CONDUCT OF DEMONSTRATION PROJECTS.— 
(1) SITES.—The Secretary shall conduct dem-
onstration projects in not less than 4, but not more 
than 8, sites. 
(2) SELECTION OF SITES.—The Secretary shall 
select demonstration sites on the basis of proposals 
submitted under paragraph (3) that are located in 
geographic areas that— 
(A) include both urban and rural eligible 
organizations; 
(B) are geographically diverse and readily 
accessible to a significant number of eligible 
children; and 
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(C) take into account adequate representa-
tion of children of ethnic and racial minorities. 
(3) PROPOSALS.— 
(A) IN GENERAL.—The Secretary shall ac-
cept proposals to furnish pediatric palliative 
care and pediatric palliative care consultation 
services under the demonstration projects from 
any eligible organization at such time, in such 
manner, and in such form as the Secretary may 
require. 
(B) APPLICATION
FOR
ADMINISTRATIVE 
GRANTS.—If the eligible organization desires to 
receive an administrative grant under sub-
section (c)(2), the proposal submitted under 
subparagraph (A) shall include a request for 
the grant, specify the amount requested, and 
identify the purposes for which the organization 
will use any funds made available under the 
grant. 
(4) COLLECTION AND SUBMISSION OF DATA.— 
(A) COLLECTION.—Each eligible organiza-
tion participating in a demonstration project 
shall collect such data as the Secretary may re-
quire to facilitate the evaluation to be com-
pleted under section 204. 
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(B) SUBMISSION.—Each eligible organiza-
tion shall submit the data collected under sub-
paragraph (A) to the Secretary at such time, in 
such manner, and in such form as the Secretary 
may require. 
(5) DURATION.—The Secretary shall complete 
the demonstration projects within a period of 5 
years that includes a period of 1 year during which 
the Secretary shall complete the evaluation under 
section 204. 
SEC. 203. SYMPOSIUM ON PEDIATRIC PALLIATIVE CARE. 
(a) CONVENING A SYMPOSIUM.—The Secretary of 
Health and Human Services shall convene a symposium 
on Pediatric Palliative Care (in this section referred to as 
the ‘‘symposium’’). The symposium shall occur not later 
than June 30, 2008. 
(b) PURPOSES.—The purposes of the symposium 
shall be to— 
(1) assess the initial response to the Institute 
of Medicine’s 2003 report on ‘‘When Children Die: 
Improving Palliative and End-of-Life Care for Chil-
dren and Their Families’’; and 
(2) increase awareness of a child’s life-threat-
ening condition or death on the child, the family of 
the child, and society as a whole, and the importance 
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of providing quality pediatric palliative care to chil-
dren with life-threatening conditions and the families 
of such children in the United States. 
(c) ATTENDEES.—The Secretary of Health and 
Human Services, or the designee of the Secretary, shall 
attend the symposium along with other nongovernmental 
organizations, interested parties, and clinicians. 
(d) REPORT.—The symposium shall report to the 
Secretary of Health and Human Services and the appro-
priate committees of Congress on recommendations de-
rived from the symposium and on the status of depart-
mental research activities concerning palliative care for 
children with life-threatening conditions. 
(e) AUTHORIZATION
OF APPROPRIATIONS.—There 
are authorized to be appropriated to carry out this section 
$300,000 for fiscal year 2008. 
SEC. 204. EVALUATION AND REPORTS TO CONGRESS. 
(a) EVALUATIONS.—During the 1-year period fol-
lowing the first 4 years of the demonstration projects, the 
Secretary shall complete an evaluation of the demonstra-
tion projects using outcomes in order— 
(1) to determine the short-term and long-term 
costs and benefits of changing hospice care (as de-
fined in section 1861(dd)(1) of the Social Security 
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Act (42 U.S.C. 1395x(dd)(1))) provided under the 
Medicare program to children, to include— 
(A) the pediatric palliative care furnished 
under the demonstration projects; and 
(B) the Medicare program to permit eligi-
ble children to receive curative and palliative 
care simultaneously; 
(2) to review the implementation of the dem-
onstration projects compared to recommendations 
contained in the report published in 2003 by the In-
stitute of Medicine of the National Academy of 
Sciences entitled ‘‘When Children Die: Improving 
Palliative and End-of-Life Care for Children and 
Their Families’’; 
(3) to determine the quality and duration of 
palliative care for individuals who receive such care 
under the demonstration projects who would not be 
eligible to receive such care under the Medicare pro-
gram; 
(4) to determine whether any increase in pay-
ments for pediatric palliative care is offset by sav-
ings in other parts of the Medicare program; and 
(5) to determine the projected cost of imple-
menting the demonstration projects on a national 
basis. 
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(b) REPORTS.— 
(1) INTERIM REPORT.—Not later than the date 
that is 2 years after the date on which the dem-
onstration projects are implemented, the Secretary 
shall submit an interim report to Congress on the 
demonstration projects. 
(2) FINAL REPORT.—Not later than the date 
that is 1 year after the date on which the dem-
onstration projects end, the Secretary shall submit a 
final report to Congress on the demonstration 
projects that includes the results of the evaluation 
conducted under paragraph (1) together with such 
recommendations for legislation or administrative 
action as the Secretary determines is appropriate. 
SEC. 205. AUTHORIZATION OF APPROPRIATIONS. 
(a) IN GENERAL.—There are authorized to be appro-
priated— 
(1) $2,500,000, to carry out the demonstration 
projects under section 201; 
(2) $2,500,000, to carry out the demonstration 
projects under section 202, including for awarding 
grants under subsection (c)(2) of such section; and 
(3) $300,000, to carry out section 203. 
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(b) AVAILABILITY.—Sums appropriated under sub-
section (a) shall remain available without fiscal year limi-
tation until expended. 
Æ 
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