I 

108TH CONGRESS 

1ST SESSION H. R. 3127

To improve the palliative and end-of-life care provided to children with lifethreatening 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.

1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled,

3 SECTION 1. SHORT TITLE; TABLE OF CONTENTS. 

4 (a) SHORT TITLE.—This Act may be cited as the 

5 ‘‘Pediatric Palliative Care Act of 2003’’. 

6 (b) TABLE OF CONTENTS.—The table of contents of 

7 this Act is as follows:

Sec. 1. Short title; table of contents. 
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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.

1 TITLE I—GRANTS TO EXPAND 

2 PEDIATRIC PALLIATIVE CARE 

3 SERVICES AND RESEARCH 

4 SEC. 101. EDUCATION AND TRAINING. 

5 Subpart 2 of part E of title VII of the Public Health 

6 Service Act (42 U.S.C. 295 et seq.) is amended—

7 (1) in section 770(a) by inserting ‘‘except for 

8 section 771,’’ after ‘‘carrying out this subpart’’; and 

9 (2) by adding at the end the following: 

10 ‘‘SEC. 771. PEDIATRIC PALLIATIVE CARE SERVICES EDU11 CATION AND TRAINING. 

12 ‘‘(a) ESTABLISHMENT.—The Secretary may award 

13 grants to eligible entities to provide training in pediatric 

14 palliative care and related services. 

15 ‘‘(b) ELIGIBLE ENTITY DEFINED.—

16 ‘‘(1) IN GENERAL.—In this section the term ‘el17 igible entity’ means a health care provider that is af18 filiated with an academic institution, that is pro19 viding comprehensive pediatric palliative care serv-
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1 ices, alone or through an arrangement with another 

2 entity, and that has demonstrated experience in pro3 viding training and consultative services in pediatric 

4 palliative care including—

5 ‘‘(A) children’s hospitals or other hospitals 

6 or medical centers with significant capacity in 

7 caring for children with life-threatening condi8 tions; 

9 ‘‘(B) pediatric hospices or hospices with 

10 significant pediatric palliative care programs; 

11 ‘‘(C) home health agencies with a dem12 onstrated capacity to serve children with life13 threatening conditions and that provide pedi14 atric palliative care; and 

15 ‘‘(D) any other entity that the Secretary 

16 determines is appropriate. 

17 ‘‘(2) LIFE-THREATENING CONDITION DE18 FINED.—In this subsection, the term ‘life-threat19 ening condition’ has the meaning given such term by 

20 the Secretary (in consultation with hospice programs 

21 (as defined in section 1861(dd)(2) of the Social Se22 curity Act (42 U.S.C. 1395x(dd)(2))) and academic 

23 experts in end-of-life care), except that the Secretary 

24 may not limit such term to individuals who are ter-
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1 minally ill (as defined in section 1861(dd)(3) of the 

2 Social Security Act (42 U.S.C. 1395x(dd)(3))). 

3 ‘‘(c) AUTHORIZED ACTIVITIES.—Grant funds award4 ed under subsection (a) shall be used to—

5 ‘‘(1) provide short-term training and education 

6 programs in pediatric palliative care for the range of 

7 interdisciplinary health professionals and others pro8 viding such care; 

9 ‘‘(2) provide consultative services and guidance 

10 to health care providers that are developing and 

11 building comprehensive pediatric palliative care pro12 grams; 

13 ‘‘(3) develop regional information outreach and 

14 other resources to assist clinicians and families in 

15 local and outlying communities and rural areas; 

16 ‘‘(4) develop or evaluate current curricula and 

17 educational materials being used in providing such 

18 education and guidance relating to pediatric pallia19 tive care; 

20 ‘‘(5) facilitate the development, assessment, and 

21 implementation of clinical practice guidelines and in22 stitutional protocols and procedures for pediatric 

23 palliative, end-of-life, and bereavement care; and 
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1 ‘‘(6) assure that families of children with life2 threatening conditions are an integral part of these 

3 processes. 

4 ‘‘(d) AUTHORIZATION OF APPROPRIATIONS.—There 

5 are authorized to be appropriated to carry out this section 

6 $5,000,000 for each of fiscal years 2004 through 2008.’’. 

7 SEC. 102. GRANTS TO EXPAND PEDIATRIC PALLIATIVE 

8 CARE. 

9 Part Q of title III of the Public Health Service Act 

10 (42 U.S.C. 280h et seq.) is amended by adding at the end 

11 the following: 

12 ‘‘SEC. 399Z–1. GRANTS TO EXPAND PEDIATRIC PALLIATIVE 

13 CARE. 

14 ‘‘(a) ESTABLISHMENT.—The Secretary, acting 

15 through the Administrator of the Health Resources and 

16 Services Administration may award grants to eligible enti17 ties to implement or expand pediatric palliative care pro18 grams for children with life-threatening conditions. 

19 ‘‘(b) ELIGIBLE ENTITY DEFINED.—In this section, 

20 the term ‘eligible entity’ means—

21 ‘‘(1) children’s hospitals or other hospitals with 

22 a capacity and ability to care for children with life23 threatening conditions;
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1 ‘‘(2) hospices with a demonstrated capacity and 

2 ability to care for children with life-threatening con3 ditions and their families; and 

4 ‘‘(3) home health agencies with—

5 ‘‘(A) a demonstrated capacity and ability 

6 to care for children with life-threatening condi7 tions; and 

8 ‘‘(B) expertise in providing palliative care. 

9 ‘‘(c) AUTHORIZED ACTIVITIES.—Grant funds award10 ed under subsection (a) shall be used to—

11 ‘‘(1) create new pediatric palliative care pro12 grams; 

13 ‘‘(2) start or expand needed additional care set14 tings, such as respite, hospice, inpatient day serv15 ices, or other care settings to provide a continuum 

16 of care across inpatient, home, and community-based 

17 settings; 

18 ‘‘(3) expand comprehensive pediatric palliative 

19 care services, including care coordination services, to 

20 greater numbers of children and broader service 

21 areas, including regional and rural outreach; and 

22 ‘‘(4) support communication linkages and care 

23 coordination, telemedicine and teleconferencing, and 

24 measures to improve patient safety. 
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1 ‘‘(d) APPLICATION.—Each eligible entity desiring a 

2 grant under this section shall submit an application to the 

3 Administrator at such time, in such manner, and con4 taining such information as the Administrator may re5 quire. 

6 ‘‘(e) AUTHORIZATION OF APPROPRIATIONS.—There 

7 are authorized to be appropriated to carry out this section 

8 $10,000,000 for each of fiscal years 2004 through 2008.’’. 

9 SEC. 103. PEDIATRIC PALLIATIVE CARE TRAINING AND 

10 RESIDENCY GRANTS. 

11 Part A of title IV of the Public Health Service Act 

12 (42 U.S.C. 281 et seq.) is amended by adding at the end 

13 the following: 

14 ‘‘SEC. 404F. PEDIATRIC PALLIATIVE CARE TRAINING AND 

15 RESIDENCY GRANTS. 

16 ‘‘(a) ESTABLISHMENT.—The Director of the Na17 tional Institutes of Health is authorized to award training 

18 grants to eligible entities to expand the number of physi19 cians, nurses, mental health professionals, and appropriate 

20 allied health professionals and specialists (as determined 

21 by the Secretary) with pediatric palliative clinical training 

22 and research experience. 

23 ‘‘(b) ELIGIBLE ENTITY DEFINED.—In this section, 

24 the term ‘eligible entity’ means—
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1 ‘‘(1) a pediatric department of a medical school 

2 and other related departments including—

3 ‘‘(A) oncology; 

4 ‘‘(B) virology; 

5 ‘‘(C) neurology; and 

6 ‘‘(D) psychiatry; 

7 ‘‘(2) a school of nursing; 

8 ‘‘(3) a school of psychology and social work; 

9 and 

10 ‘‘(4) a children’s hospital or other hospital with 

11 a significant number of pediatric patients with life12 threatening conditions. 

13 ‘‘(c) APPLICATION.—Each eligible entity desiring a 

14 grant under this section shall submit an application to the 

15 Director at such time, in such manner, and containing 

16 such information as the Director may require. 

17 ‘‘(d) AUTHORIZATION OF APPROPRIATIONS.—There 

18 are authorized to be appropriated to carry out this section 

19 $5,000,000 for each of fiscal years 2004 through 2008.’’. 

20 SEC. 104. MODEL PROGRAM GRANTS. 

21 Part Q of title III of the Public Health Service Act 

22 (42 U.S.C. 280h et seq.), as amended by section 102, is 

23 further amended by adding at the end the following: 
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1 ‘‘SEC. 399Z–2. MODEL PROGRAM GRANTS. 

2 ‘‘(a) ESTABLISHMENT.—The Secretary may award 

3 grants to eligible entities to enhance pediatric palliative 

4 care and care for children with life-threatening conditions 

5 in general pediatric or family practice residency training 

6 programs through the development of model programs. 

7 ‘‘(b) ELIGIBLE ENTITY DEFINED.—In this section 

8 the term ‘eligible entity’ means a pediatric department 

9 of—

10 ‘‘(1) a medical school; 

11 ‘‘(2) a children’s hospital; or 

12 ‘‘(3) any other hospital with a general pediatric 

13 or family practice residency program that serves a 

14 significant number of pediatric patients with life15 threatening conditions. 

16 ‘‘(c) APPLICATION.—Each eligible entity desiring a 

17 grant under this section shall submit an application to the 

18 Administrator at such time, in such manner, and con19 taining such information as the Administrator may re20 quire. 

21 ‘‘(d) AUTHORIZATION OF APPROPRIATIONS.—There 

22 are authorized to be appropriated to carry out this section 

23 $5,000,000 for each of fiscal years 2004 through 2008.’’. 

24 SEC. 105. RESEARCH. 

25 (a) PAIN AND SYMPTOM MANAGEMENT.—The Direc26 tor of the National Institutes of Health (in this section 
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1 referred to as the ‘‘Director’’) shall provide translational 

2 research grants to fund research in pediatric pain and 

3 symptom management that will utilize existing facilities 

4 of the National Institutes of Health including—

5 (1) pediatric pharmacological research units; 

6 (2) the general clinical research centers; and 

7 (3) other centers providing infrastructure for 

8 patient oriented research. 

9 (b) ELIGIBLE ENTITIES.—In carrying out subsection 

10 (a), the Director may award grants for the conduct of re11 search to— 

12 (1) children’s hospitals or other hospitals serv13 ing a significant number of children with life-threat14 ening conditions; 

15 (2) pediatric departments of medical schools; 

16 (3) institutions currently participating in Na17 tional Institutes of Health network of pediatric 

18 pharmacological research units; and 

19 (4) hospices with pediatric palliative care pro20 grams and academic affiliations. 

21 (c) AUTHORIZATION OF APPROPRIATIONS.—There 

22 are authorized to be appropriated to carry out this section 

23 $10,000,000, to remain available until expended.
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1 TITLE II—PEDIATRIC PALLIA2 TIVE CARE DEMONSTRATION 

3 PROJECTS 

4 SEC. 201. MEDICARE PEDIATRIC PALLIATIVE CARE DEM5 ONSTRATION PROJECTS. 

6 (a) DEFINITIONS.—In this section: 

7 (1) CARE COORDINATION SERVICES.—The term 

8 ‘‘care coordination services’’ means services that pro9 vide for the coordination of, and assistance with, re10 ferral for medical and other services, including mul11 tidisciplinary care conferences, coordination with 

12 other providers involved in care of the eligible child, 

13 patient and family caregiver education and coun14 seling, and such other services as the Secretary de15 termines to be appropriate in order to facilitate the 

16 coordination and continuity of care furnished to an 

17 individual. 

18 (2) DEMONSTRATION PROJECT.—The term 

19 ‘‘demonstration project’’ means a demonstration 

20 project established by the Secretary under sub21 section (b)(1). 

22 (3) ELIGIBLE CHILD.—The term ‘‘eligible 

23 child’’ means an individual with a life-threatening 

24 condition who is entitled to benefits under part A of 
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1 the medicare program and who is under 18 years of 

2 age. 

3 (4) ELIGIBLE PROVIDER.—The term ‘‘eligible 

4 provider’’ means—

5 (A) a pediatric palliative care program that 

6 is a public agency or private organization (or a 

7 subdivision thereof) which—

8 (i)(I) is primarily engaged in pro9 viding the care and services described in 

10 section 1861(dd)(1) of the Social Security 

11 Act (42 U.S.C. 1395(dd)(1)) and makes 

12 such services available (as needed) on a 

13 24-hour basis and which also provides 

14 counseling (including bereavement coun15 seling) for the immediate family of eligible 

16 children; 

17 (II) provides for such care and serv18 ices in eligible children’s homes, on an out19 patient basis, and on a short-term inpa20 tient basis, directly or under arrangements 

21 made by the agency or organization, except 

22 that—

23 (aa) the agency or organization 

24 must routinely provide directly sub25 stantially all of each of the services 
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1 described in subparagraphs (A), (C), 

2 and (H) of such section 1861(dd)(1); 

3 (bb) in the case of other services 

4 described in such section 1861(dd)(1) 

5 which are not provided directly by the 

6 agency or organization, the agency or 

7 organization must maintain profes8 sional management responsibility for 

9 all such services furnished to an eligi10 ble child, regardless of the location or 

11 facility in which such services are fur12 nished; and 

13 (III)(aa) identifies medical, commu14 nity, and social service needs; 

15 (bb) simplifies access to service; 

16 (cc) uses the full range of community 

17 resources, including the friends and family 

18 of the eligible child; and 

19 (dd) provides educational opportuni20 ties relating to health care; and 

21 (ii) has an interdisciplinary group of 

22 personnel which—

23 (I) includes at least—

24 (aa) 1 physician (as defined 

25 in section 1861(r)(1) of the So-
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1 cial Security Act (42 U.S.C. 

2 1395x(r)(1))); 

3 (bb) 1 registered profes4 sional nurse; and 

5 (cc) 1 social worker; 

6 employed by or, in the case of a physi7 cian described in item (aa), under 

8 contract with the agency or organiza9 tion, and also includes at least 1 pas10 toral or other counselor; 

11 (II) provides (or supervises the 

12 provision of) the care and services de13 scribed in such section 1861(dd)(1); 

14 and 

15 (III) establishes the policies gov16 erning the provision of such care and 

17 services; 

18 (iii) maintains central clinical records 

19 on all patients; 

20 (iv) does not discontinue the palliative 

21 care it provides with respect to an eligible 

22 child because of the inability of the eligible 

23 child to pay for such care; 

24 (v)(I) uses volunteers in its provision 

25 of care and services in accordance with 
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1 standards set by the Secretary, which 

2 standards shall ensure a continuing level of 

3 effort to use such volunteers; and 

4 (II) maintains records on the use of 

5 these volunteers and the cost savings and 

6 expansion of care and services achieved 

7 through the use of these volunteers; 

8 (vi) in the case of an agency or orga9 nization in any State in which State or ap10 plicable local law provides for the licensing 

11 of agencies or organizations of this nature, 

12 is licensed pursuant to such law; 

13 (vii) seeks to ensure that children and 

14 families receive complete, timely, under15 standable information about diagnosis, 

16 prognosis, treatments, and palliative care 

17 options; 

18 (viii) ensures that children and fami19 lies participate in effective and timely pre20 vention, assessment, and treatment of 

21 physical and psychological symptoms of 

22 distress; and 

23 (ix) meets such other requirements as 

24 the Secretary may find necessary in the in25 terest of the health and safety of the eligi-
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1 ble children who are provided with pallia2 tive care by such agency or organization; 

3 and 

4 (B) any other individual or entity with an 

5 agreement under section 1866 of the Social Se6 curity Act (42 U.S.C. 1395cc) that—

7 (i) has demonstrated experience in 

8 providing interdisciplinary team-based pal9 liative care and care coordination services 

10 (as defined in paragraph (1)) to pediatric 

11 populations; and 

12 (ii) the Secretary determines is appro13 priate. 

14 (5) LIFE-THREATENING CONDITION.—The term 

15 ‘‘life-threatening condition’’ has the meaning given 

16 such term by the Secretary (in consultation with 

17 hospice programs (as defined in section 1861(dd)(2) 

18 of the Social Security Act (42 U.S.C. 1395x(dd)(2))) 

19 and academic experts in end-of-life care), except that 

20 the Secretary may not limit such term to individuals 

21 who are terminally ill (as defined in section 

22 1861(dd)(3) of the Social Security Act (42 U.S.C. 

23 1395x(dd)(3))). 

24 (6) MEDICARE PROGRAM.—The term ‘‘medicare 

25 program’’ means the health benefits program under
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1 title XVIII of the Social Security Act (42 U.S.C. 

2 1395 et seq.). 

3 (7) SECRETARY.—The term ‘‘Secretary’’ means 

4 the Secretary of Health and Human Services. 

5 (b) PEDIATRIC PALLIATIVE CARE DEMONSTRATION

6 PROJECTS.—

7 (1) ESTABLISHMENT.—The Secretary shall es8 tablish demonstration projects in accordance with 

9 the provisions of this subsection to provide pediatric 

10 palliative care to eligible children. 

11 (2) PARTICIPATION.—

12 (A) ELIGIBLE PROVIDERS.—Any eligible 

13 provider may furnish items or services covered 

14 under the pediatric palliative care benefit. 

15 (B) ELIGIBLE CHILDREN.—The Secretary 

16 shall permit any eligible child residing in the 

17 service area of an eligible provider participating 

18 in a demonstration project to participate in 

19 such project on a voluntary basis. 

20 (c) SERVICES UNDER DEMONSTRATION

21 PROJECTS.—

22 (1) IN GENERAL.—Except as otherwise pro23 vided in this subsection, the provisions of section 

24 1814(i) of the Social Security Act (42 U.S.C. 

25 1395f(i)) shall apply to the payment for pediatric 
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1 palliative care provided under the demonstration 

2 projects in the same manner in which such section 

3 applies to the payment for hospice care (as defined 

4 in section 1861(dd)(1) of the Social Security Act (42 

5 U.S.C. 1395x(dd)(1))) provided under the medicare 

6 program. 

7 (2) COVERAGE OF PEDIATRIC PALLIATIVE

8 CARE.—

9 (A) IN GENERAL.—Notwithstanding sec10 tion 1862(a)(1)(C) of the Social Security Act 

11 (42 U.S.C. 1395y(a)(1)(C)), the Secretary shall 

12 provide for reimbursement for items and serv13 ices provided under the pediatric palliative care 

14 benefit made available under the demonstration 

15 projects in a manner that is consistent with the 

16 requirements of subparagraph (B). 

17 (B) BENEFIT.—Under the pediatric pallia18 tive care benefit, the following requirements 

19 shall apply: 

20 (i) WAIVER OF REQUIREMENT TO

21 ELECT HOSPICE CARE.—Each eligible child 

22 may receive benefits without an election 

23 under section 1812(d)(1) of the Social Se24 curity Act (42 U.S.C. 1395d(d)(1)) to re25 ceive hospice care (as defined in section 
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1 1861(dd)(1) of such Act (42 U.S.C. 

2 1395x(dd)(1))) having been made with re3 spect to the eligible child. 

4 (ii) AUTHORIZATION FOR CURATIVE

5 TREATMENT.—Each eligible child may con6 tinue to receive benefits for disease and 

7 symptom modifying treatment under the 

8 medicare program. 

9 (iii) PROVISION OF CARE COORDINA10 TION SERVICES.—Each eligible child shall 

11 receive care coordination services (as de12 fined in subsection (a)(1)) and hospice 

13 care (as so defined) through an eligible 

14 provider participating in a demonstration 

15 project, regardless of whether such indi16 vidual has been determined to be termi17 nally ill (as defined in section 1861(dd)(3) 

18 of the Social Security Act (42 U.S.C. 

19 1395x(dd)(3))). 

20 (iv) AVAILABILITY OF INFORMATION

21 ON PEDIATRIC PALLIATIVE CARE.—Each 

22 eligible child and the family of such child 

23 shall receive information and education in 

24 order to better understand the utility of 

25 pediatric palliative care. 
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1 (v) AVAILABILITY OF BEREAVEMENT

2 COUNSELING.—Each family of an eligible 

3 child shall receive bereavement counseling, 

4 if appropriate. 

5 (vi) ADDITIONAL BENEFITS.—Under 

6 the demonstration projects, the Secretary 

7 may include any other item or service—

8 (I) for which payment may other9 wise be made under the medicare pro10 gram; and 

11 (II) that is consistent with the 

12 recommendations contained in the re13 port published in 2003 by the Insti14 tute of Medicine of the National 

15 Academy of Sciences entitled ‘‘When 

16 Children Die: Improving Palliative 

17 and End-of-Life Care for Children 

18 and Their Families’’. 

19 (C) PAYMENT.— 

20 (i) ESTABLISHMENT OF PAYMENT

21 METHODOLOGY.—The Secretary shall es22 tablish a methodology for determining the 

23 amount of payment for pediatric palliative 

24 care furnished under the demonstration 

25 projects that is similar to the methodology 
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1 for determining the amount of payment for 

2 hospice care (as defined in section 

3 1861(dd)(1) of the Social Security Act (42 

4 U.S.C. 1395x(dd)(1))) under section 

5 1814(i) of such Act (42 U.S.C. 1395f(i)), 

6 except as provided in the following sub7 clauses: 

8 (I) AMOUNT OF PAYMENT.—Sub9 ject to subclauses (II) and (III), the 

10 amount of payment for pediatric pal11 liative care shall be equal to the 

12 amount that would be paid for hospice 

13 care (as so defined), increased by an 

14 appropriate percentage to account for 

15 the additional costs of providing be16 reavement counseling and care coordi17 nation services (as defined in sub18 section (a)(1)). 

19 (II) WAIVER OF HOSPICE CAP.—

20 The limitation under section 

21 1814(i)(2) of the Social Security Act 

22 (42 U.S.C. 1395f(i)(2)) shall not 

23 apply with respect to pediatric pallia24 tive care and amounts paid for pedi25 atric palliative care under this sub-
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1 paragraph shall not be counted 

2 against the cap amount described in 

3 such section. 

4 (III) SEPARATE PAYMENT FOR

5 COUNSELING SERVICES.—Notwith6 standing section 1814(i)(1)(A) of the 

7 Social Security Act (42 U.S.C. 

8 1395f(i)(1)(A)), the Secretary may 

9 pay for bereavement counseling as a 

10 separate service. 

11 (ii) SPECIAL RULES FOR PAYMENT OF

12 MEDICARE+CHOICE ORGANIZATIONS.—The 

13 Secretary shall establish procedures under 

14 which the Secretary provides for an appro15 priate adjustment in the monthly payments 

16 made under section 1853 of the Social Se17 curity Act (42 U.S.C. 1395w–23) to any 

18 Medicare+Choice organization that pro19 vides health care items or services to an el20 igible child who is participating in a dem21 onstration project. 

22 (3) COVERAGE OF PEDIATRIC PALLIATIVE CARE

23 CONSULTATION SERVICES.—Under the demonstra24 tion projects, the Secretary shall provide for a one25 time payment on behalf of each eligible child who
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1 has not yet elected to participate in the demonstra2 tion project for services that are furnished by a phy3 sician who is either the medical director or an em4 ployee of an eligible provider participating in such 

5 a project and that consist of—

6 (A) an evaluation of the individual’s need 

7 for pain and symptom management, including 

8 the need for pediatric palliative care; 

9 (B) counseling the individual and the fam10 ily of such individual with respect to the bene11 fits of pediatric palliative care and care options; 

12 and 

13 (C) if appropriate, advising the individual 

14 and the family of such individual regarding ad15 vanced care planning. 

16 (d) CONDUCT OF DEMONSTRATION PROJECTS.—

17 (1) SITES.—The Secretary shall conduct dem18 onstration projects in at least 4, but not more than 

19 8, sites. 

20 (2) SELECTION OF SITES.—The Secretary shall 

21 select demonstration sites on the basis of proposals 

22 submitted under paragraph (3) that are located in 

23 geographic areas that—

24 (A) include both urban and rural eligible 

25 providers; and 
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1 (B) are geographically diverse and readily 

2 accessible to a significant number of eligible 

3 children. 

4 (3) PROPOSALS.—The Secretary shall accept 

5 proposals to furnish pediatric palliative care under 

6 the demonstration projects from any eligible provider 

7 at such time, in such manner, and in such form as 

8 the Secretary may reasonably require. 

9 (4) FACILITATION OF EVALUATION.—The Sec10 retary shall design the demonstration projects to fa11 cilitate the evaluation conducted under subsection 

12 (e)(1). 

13 (5) DURATION.—The Secretary shall complete 

14 the demonstration projects within a period of 5 

15 years that includes a period of 1 year during which 

16 the Secretary shall complete the evaluation under 

17 subsection (e)(1). 

18 (e) EVALUATION AND REPORTS TO CONGRESS.—

19 (1) EVALUATION.—During the 1-year period 

20 following the first 4 years of the demonstration 

21 projects, the Secretary shall complete an evaluation 

22 of the demonstration projects in order—

23 (A) to determine the short-term and long24 term costs and benefits of changing—
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1 (i) hospice care (as defined in section 

2 1861(dd)(1) of the Social Security Act (42 

3 U.S.C. 1395x(dd)(1))) provided under the 

4 medicare program to children to include 

5 the pediatric palliative care furnished 

6 under the demonstration projects; and 

7 (ii) the medicare program to permit 

8 eligible children to receive curative and pal9 liative care simultaneously; 

10 (B) to review the implementation of the 

11 demonstration projects compared to rec12 ommendations contained in the report published 

13 in 2003 by the Institute of Medicine of the Na14 tional Academy of Sciences entitled ‘‘When 

15 Children Die: Improving Palliative and End-of16 Life Care for Children and Their Families’’; 

17 (C) to determine the quality and duration 

18 of palliative care for individuals who receive 

19 such care under the demonstration projects who 

20 would not be eligible to receive such care under 

21 the medicare program; 

22 (D) whether any increase in payments for 

23 pediatric palliative care is offset by savings in 

24 other parts of the medicare program; and 
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1 (E) the projected cost of implementing the 

2 demonstration projects on a national basis. 

3 (2) REPORTS.—

4 (A) INTERIM REPORT.—Not later than the 

5 date that is 2 years after the date on which the 

6 demonstration projects are implemented, the 

7 Secretary shall submit an interim report to 

8 Congress on the demonstration projects. 

9 (B) FINAL REPORT.—Not later than the 

10 date that is 1 year after the date on which the 

11 demonstration projects end, the Secretary shall 

12 submit a final report to Congress on the dem13 onstration projects that includes the results of 

14 the evaluation conducted under paragraph (1) 

15 together with such recommendations for legisla16 tion or administrative action as the Secretary 

17 determines is appropriate. 

18 (f) WAIVER OF MEDICARE REQUIREMENTS.—The 

19 Secretary shall waive compliance with such requirements 

20 of the medicare program to the extent and for the period 

21 the Secretary finds necessary to conduct the demonstra22 tion projects. 

23 SEC. 202. PRIVATE SECTOR PEDIATRIC PALLIATIVE CARE 

24 DEMONSTRATION PROJECTS. 

25 (a) DEFINITIONS.—In this section: 
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1 (1) DEMONSTRATION PROJECT.—The term 

2 ‘‘demonstration project’’ means a demonstration 

3 project established by the Secretary under sub4 section (b)(1). 

5 (2) ELIGIBLE CHILD.—The term ‘‘eligible 

6 child’’ means an individual with a life-threatening 

7 condition who is—

8 (A) under 18 years of age; 

9 (B) enrolled for health benefits coverage 

10 under an eligible health plan; and 

11 (C) not enrolled under (or entitled to) ben12 efits under a health plan described in para13 graph (3)(C). 

14 (3) ELIGIBLE HEALTH PLAN.—

15 (A) IN GENERAL.—Subject to clauses (ii) 

16 and (iii), the term ‘‘eligible health plan’’ means 

17 an individual or group plan that provides, or 

18 pays the cost of, medical care (as such term is 

19 defined in section 2791 of the Public Health 

20 Service Act (42 U.S.C. 300gg–91)). 

21 (B) TYPES OF PLANS INCLUDED.—For 

22 purposes of subparagraph (A), the term ‘‘eligi23 ble health plan’’ includes the following health 

24 plans, and any combination thereof:
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1 (i) A group health plan (as defined in 

2 section 2791(a) of the Public Health Serv3 ice Act (42 U.S.C. 300gg–91(a))), but only 

4 if the plan—

5 (I) has 50 or more participants 

6 (as defined in section 3(7) of the Em7 ployee Retirement Income Security 

8 Act of 1974 (29 U.S.C. 1002(7))); or 

9 (II) is administered by an entity 

10 other than the employer who estab11 lished and maintains the plan. 

12 (ii) A health insurance issuer (as de13 fined in section 2791(b) of the Public 

14 Health Service Act (42 U.S.C. 300gg–

15 91(b))). 

16 (iii) A health maintenance organiza17 tion (as defined in section 2791(b) of the 

18 Public Health Service Act (42 U.S.C. 

19 300gg–91(b))). 

20 (iv) A long-term care policy, including 

21 a nursing home fixed indemnity policy (un22 less the Secretary determines that such a 

23 policy does not provide sufficiently com24 prehensive coverage of a benefit so that the 

25 policy should be treated as a health plan). 
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1 (v) An employee welfare benefit plan 

2 or any other arrangement which is estab3 lished or maintained for the purpose of of4 fering or providing health benefits to the 

5 employees of 2 or more employers. 

6 (vi) Health benefits coverage provided 

7 under a contract under the Federal em8 ployees health benefits program under 

9 chapter 89 of title 5, United States Code. 

10 (C) TYPES OF PLANS EXCLUDED.—For 

11 purposes of subparagraph (A), the term ‘‘eligi12 ble health plan’’ does not include any of the fol13 lowing health plans: 

14 (i) The medicare program under title 

15 XVIII of the Social Security Act (42 

16 U.S.C. 1395 et seq.). 

17 (ii) The medicaid program under title 

18 XIX of the Social Security Act (42 U.S.C. 

19 1396 et seq.). 

20 (iii) A medicare supplemental policy 

21 (as defined in section 1882(g)(1) of the 

22 Social Security Act (42 U.S.C. 1395ss et 

23 seq.). 
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1 (iv) The health care program for ac2 tive military personnel under title 10, 

3 United States Code. 

4 (v) The veterans health care program 

5 under chapter 17 of title 38, United States 

6 Code. 

7 (vi) The Civilian Health and Medical 

8 Program of the Uniformed Services 

9 (CHAMPUS), as defined in section 

10 1072(4) of title 10, United States Code. 

11 (vii) The Indian health service pro12 gram under the Indian Health Care Im13 provement Act (25 U.S.C. 1601 et seq.). 

14 (4) ELIGIBLE ORGANIZATION.—The term ‘‘eligi15 ble organization’’ means an organization that pro16 vides health benefits coverage under an eligible 

17 health plan. 

18 (5) LIFE-THREATENING CONDITION.—The term 

19 ‘‘life-threatening condition’’ has the meaning given 

20 such term under section 201(a)(4). 

21 (6) PEDIATRIC PALLIATIVE CARE.—The term 

22 ‘‘pediatric palliative care’’ means services of the type 

23 to be furnished under the demonstration projects 

24 under section 201, including care coordination serv25 ices (as defined in subsection (a)(1) of such section). 
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1 (7) PEDIATRIC PALLIATIVE CARE CONSULTA2 TION SERVICES.—The term ‘‘pediatric palliative care 

3 consultation services’’ means services of the type de4 scribed in section 201(c)(3). 

5 (8) SECRETARY.—The term ‘‘Secretary’’ means 

6 the Secretary of Health and Human Services, acting 

7 through the Director of the Agency for Healthcare 

8 Research and Quality. 

9 (b) NONMEDICARE PEDIATRIC PALLIATIVE CARE

10 DEMONSTRATION PROJECTS.—

11 (1) ESTABLISHMENT.—The Secretary shall es12 tablish demonstration projects under this section at 

13 the same time as the Secretary establishes the dem14 onstration projects under section 201 and in accord15 ance with the provisions of this subsection to dem16 onstrate the provision of pediatric palliative care and 

17 pediatric palliative care consultation services to eligi18 ble children who are not entitled to (or enrolled for) 

19 coverage under the health plans described in sub20 section (a)(3)(C). 

21 (2) PARTICIPATION.—

22 (A) ELIGIBLE ORGANIZATIONS.—The Sec23 retary shall permit any eligible organization to 

24 participate in a demonstration project on a vol25 untary basis.
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1 (B) ELIGIBLE CHILDREN.—Any eligible or2 ganization participating in a demonstration 

3 project shall permit any eligible child enrolled in 

4 an eligible health plan offered by the organiza5 tion to participate in such project on a vol6 untary basis. 

7 (c) SERVICES UNDER DEMONSTRATION

8 PROJECTS.—

9 (1) PROVISION OF PEDIATRIC PALLIATIVE CARE

10 AND CONSULTATION SERVICES.—Under a dem11 onstration project, each eligible organization electing 

12 to participate in the demonstration project shall pro13 vide pediatric palliative care and pediatric palliative 

14 care consultation services to each eligible child who 

15 is enrolled with the organization and who elects to 

16 participate in the demonstration project. 

17 (2) AVAILABILITY OF ADMINISTRATIVE

18 GRANTS.—

19 (A) IN GENERAL.—Subject to subpara20 graph (B), the Secretary shall award grants to 

21 eligible organizations electing to participate in a 

22 demonstration project for the administrative 

23 costs incurred by the eligible organization in 

24 participating in the demonstration project, in25 cluding the costs of collecting and submitting 
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1 the data required to be submitted under sub2 section (d)(4)(B). 

3 (B) NO PAYMENT FOR SERVICES.—The 

4 Secretary may not pay eligible organizations for 

5 pediatric palliative care or pediatric palliative 

6 care consultation services furnished under the 

7 demonstration projects. 

8 (d) CONDUCT OF DEMONSTRATION PROJECTS.—

9 (1) SITES.—The Secretary shall conduct dem10 onstration projects in at least 4, but not more than 

11 8, sites. 

12 (2) SELECTION OF SITES.—The Secretary shall 

13 select demonstration sites on the basis of proposals 

14 submitted under paragraph (3) that are located in 

15 geographic areas that—

16 (A) include both urban and rural eligible 

17 organizations; and 

18 (B) are geographically diverse and readily 

19 accessible to a significant number of eligible 

20 children. 

21 (3) PROPOSALS.—

22 (A) IN GENERAL.—The Secretary shall ac23 cept proposals to furnish pediatric palliative 

24 care and pediatric palliative care consultation 

25 services under the demonstration projects from 
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1 any eligible organization at such time, in such 

2 manner, and in such form as the Secretary may 

3 require. 

4 (B) APPLICATION FOR ADMINISTRATIVE

5 GRANTS.—If the eligible organization desires to 

6 receive an administrative grant under sub7 section (c)(2), the proposal submitted under 

8 subparagraph (A) shall include a request for 

9 the grant, specify the amount requested, and 

10 identify the purposes for which the organization 

11 will use any funds made available under the 

12 grant. 

13 (4) COLLECTION AND SUBMISSION OF DATA.—

14 (A) COLLECTION.—Each eligible organiza15 tion participating in a demonstration project 

16 shall collect such data as the Secretary may re17 quire to facilitate the evaluation to be com18 pleted under subsection (e)(1). 

19 (B) SUBMISSION.—Each eligible organiza20 tion shall submit the data collected under sub21 paragraph (A) to the Secretary at such time, in 

22 such manner, and in such form as the Secretary 

23 may require. 

24 (5) DURATION.—The Secretary shall complete 

25 the demonstration projects within a period of 5 
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1 years that includes a period of 1 year during which 

2 the Secretary shall complete the evaluation under 

3 subsection (e)(1). 

4 (e) EVALUATION AND REPORTS TO CONGRESS AND

5 ELIGIBLE ORGANIZATIONS.—

6 (1) EVALUATION.—During the 1-year period 

7 following the first 4 years of the demonstration 

8 projects, the Secretary shall complete an evaluation 

9 of the demonstration projects. 

10 (2) REPORTS.—

11 (A) INTERIM REPORT.—Not later than the 

12 date that is 2 years after the date on which the 

13 demonstration projects are implemented, the 

14 Secretary shall submit an interim report to 

15 Congress and each eligible organization partici16 pating in a demonstration project on the dem17 onstration projects. 

18 (B) FINAL REPORT.—Not later than the 

19 date that is 1 year after the date on which the 

20 demonstration projects end, the Secretary shall 

21 submit a final report to Congress and each eli22 gible organization participating in a demonstra23 tion project on the demonstration projects that 

24 includes the results of the evaluation conducted 

25 under paragraph (1) together with such rec-
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1 ommendations for legislation or administrative 

2 action as the Secretary determines is appro3 priate. 

4 SEC. 203. AUTHORIZATION OF APPROPRIATIONS. 

5 (a) IN GENERAL.—There are authorized to be appro6 priated—

7 (1) $2,500,000, to carry out the demonstration 

8 projects under section 201; and 

9 (2) $2,500,000, to carry out the demonstration 

10 projects under section 202, including for awarding 

11 grants under subsection (c)(2) of such section. 

12 (b) AVAILABILITY.—Sums appropriated under sub13 section (a) shall remain available, without fiscal year limi14 tation, until expended.

Æ