II 

109TH CONGRESS 

1ST SESSION S. 174 

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

IN THE SENATE OF THE UNITED STATES 

JANUARY 26, 2005 

Mr. DEWINE (for himself, Mr. DODD, and Mrs. MURRAY) introduced the following bill; which was read twice and referred to the Committee on 

Health, Education, Labor, and Pensions 

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 ‘‘Children’s Compassionate Care Act of 2005’’. 

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

7 this Act is as follows:

Sec. 1. Short title; table of contents. 

TITLE I—GRANTS TO EXPAND PEDIATRIC PALLIATIVE CARE 

SERVICES AND RESEARCH 
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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 serv20 ices, alone or through an arrangement with another 
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1 entity, and that has demonstrated experience in pro2 viding training and consultative services in pediatric 

3 palliative care including— 

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

5 or medical centers with significant capacity in 

6 caring for children with life-threatening condi7 tions; 

8 ‘‘(B) pediatric hospices or hospices with 

9 significant pediatric palliative care programs; 

10 ‘‘(C) home health agencies with a dem11 onstrated capacity to serve children with life12 threatening conditions and that provide pedi13 atric palliative care; and 

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

15 determines is appropriate. 

16 ‘‘(2) LIFE-THREATENING CONDITION DE17 FINED.—In this subsection, the term ‘life-threat18 ening condition’ has the meaning given such term by 

19 the Secretary (in consultation with hospice programs 

20 (as defined in section 1861(dd)(2) of the Social Se21 curity Act (42 U.S.C. 1395x(dd)(2))) and academic 

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

23 may not limit such term to individuals who are ter24 minally ill (as defined in section 1861(dd)(3) of the 

25 Social Security Act (42 U.S.C. 1395x(dd)(3))). 
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1 ‘‘(c) AUTHORIZED ACTIVITIES.—Grant funds award2 ed under subsection (a) shall be used to— 

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

4 programs in pediatric palliative care for the range of 

5 interdisciplinary health professionals and others pro6 viding such care; 

7 ‘‘(2) provide consultative services and guidance 

8 to health care providers that are developing and 

9 building comprehensive pediatric palliative care pro10 grams; 

11 ‘‘(3) develop regional information outreach and 

12 other resources to assist clinicians and families in 

13 local and outlying communities and rural areas; 

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

15 educational materials being used in providing such 

16 education and guidance relating to pediatric pallia17 tive care; 

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

19 implementation of clinical practice guidelines and in20 stitutional protocols and procedures for pediatric 

21 palliative, end-of-life, and bereavement care; and 

22 ‘‘(6) assure that families of children with life23 threatening conditions are an integral part of these 

24 processes. 
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1 ‘‘(d) AUTHORIZATION OF APPROPRIATIONS.—There 

2 are authorized to be appropriated to carry out this section 

3 $5,000,000 for each of fiscal years 2006 through 2010.’’. 

4 SEC. 102. GRANTS TO EXPAND PEDIATRIC PALLIATIVE 

5 CARE. 

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

7 (42 U.S.C. 280h et seq.) is amended by adding at the end 

8 the following: 

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

10 CARE. 

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

12 through the Administrator of the Health Resources and 

13 Services Administration, may award grants to eligible en14 tities to implement or expand pediatric palliative care pro15 grams for children with life-threatening conditions. 

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

17 the term ‘eligible entity’ means— 

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

19 a capacity and ability to care for children with life20 threatening conditions; 

21 ‘‘(2) hospices with a demonstrated capacity and 

22 ability to care for children with life-threatening con23 ditions and their families; and 

24 ‘‘(3) home health agencies with— 
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1 ‘‘(A) a demonstrated capacity and ability 

2 to care for children with life-threatening condi3 tions; and 

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

5 ‘‘(c) AUTHORIZED ACTIVITIES.—Grant funds award6 ed under subsection (a) shall be used to— 

7 ‘‘(1) create new pediatric palliative care pro8 grams; 

9 ‘‘(2) start or expand needed additional care set10 tings, such as respite, hospice, inpatient day serv11 ices, or other care settings to provide a continuum 

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

13 settings; 

14 ‘‘(3) expand comprehensive pediatric palliative 

15 care services, including care coordination services, to 

16 greater numbers of children and broader service 

17 areas, including regional and rural outreach; and 

18 ‘‘(4) support communication linkages and care 

19 coordination, telemedicine and teleconferencing, and 

20 measures to improve patient safety. 

21 ‘‘(d) APPLICATION.—Each eligible entity desiring a 

22 grant under this section shall submit an application to the 

23 Administrator at such time, in such manner, and con24 taining such information as the Administrator may re25 quire. 
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1 ‘‘(e) AUTHORIZATION OF APPROPRIATIONS.—There 

2 are authorized to be appropriated to carry out this section 

3 $10,000,000 for each of fiscal years 2006 through 2010.’’. 

4 SEC. 103. PEDIATRIC PALLIATIVE CARE TRAINING AND 

5 RESIDENCY GRANTS. 

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

7 (42 U.S.C. 281 et seq.) is amended by adding at the end 

8 the following: 

9 ‘‘SEC. 404H. PEDIATRIC PALLIATIVE CARE TRAINING AND 

10 RESIDENCY GRANTS. 

11 ‘‘(a) ESTABLISHMENT.—The Director of the Na12 tional Institutes of Health is authorized to award training 

13 grants to eligible entities to expand the number of physi14 cians, nurses, mental health professionals, and appropriate 

15 allied health professionals and specialists (as determined 

16 by the Secretary) with pediatric palliative clinical training 

17 and research experience. 

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

19 the term ‘eligible entity’ means— 

20 ‘‘(1) a pediatric department of a medical school 

21 and other related departments including— 

22 ‘‘(A) oncology; 

23 ‘‘(B) virology; 

24 ‘‘(C) neurology; and 

25 ‘‘(D) psychiatry; 
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1 ‘‘(2) a school of nursing; 

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

3 and 

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

5 a significant number of pediatric patients with life6 threatening conditions. 

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

8 grant under this section shall submit an application to the 

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

10 such information as the Director may require. 

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

12 are authorized to be appropriated to carry out this section 

13 $5,000,000 for each of fiscal years 2006 through 2010.’’. 

14 SEC. 104. MODEL PROGRAM GRANTS. 

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

16 (42 U.S.C. 280h et seq.), as amended by section 102, is 

17 further amended by adding at the end the following: 

18 ‘‘SEC. 399Z–2. MODEL PROGRAM GRANTS. 

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

20 grants to eligible entities to enhance pediatric palliative 

21 care and care for children with life-threatening conditions 

22 in general pediatric or family practice residency training 

23 programs through the development of model programs. 
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1 ‘‘(b) ELIGIBLE ENTITY DEFINED.—In this section 

2 the term ‘eligible entity’ means a pediatric department 

3 of— 

4 ‘‘(1) a medical school; 

5 ‘‘(2) a children’s hospital; or 

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

7 or family practice residency program that serves a 

8 significant number of pediatric patients with life9 threatening conditions. 

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

11 grant under this section shall submit an application to the 

12 Administrator at such time, in such manner, and con13 taining such information as the Administrator may re14 quire. 

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

16 are authorized to be appropriated to carry out this section 

17 $5,000,000 for each of fiscal years 2006 through 2010.’’. 

18 SEC. 105. RESEARCH. 

19 (a) PAIN AND SYMPTOM MANAGEMENT.—The Direc20 tor of the National Institutes of Health (in this section 

21 referred to as the ‘‘Director’’) shall provide translational 

22 research grants to fund research in pediatric pain and 

23 symptom management that will utilize existing facilities 

24 of the National Institutes of Health including— 

25 (1) pediatric pharmacological research units; 
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1 (2) the general clinical research centers; and 

2 (3) other centers providing infrastructure for 

3 patient oriented research. 

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

5 (a), the Director may award grants for the conduct of re6 search to— 

7 (1) children’s hospitals or other hospitals serv8 ing a significant number of children with life-threat9 ening conditions; 

10 (2) pediatric departments of medical schools; 

11 (3) institutions currently participating in Na12 tional Institutes of Health network of pediatric 

13 pharmacological research units; and 

14 (4) hospices with pediatric palliative care pro15 grams and academic affiliations. 

16 (c) AUTHORIZATION OF APPROPRIATIONS.—There 

17 are authorized to be appropriated to carry out this section 

18 $10,000,000, to remain available until expended. 

19 TITLE II—PEDIATRIC PALLIA20 TIVE CARE DEMONSTRATION 

21 PROJECTS 

22 SEC. 201. MEDICARE PEDIATRIC PALLIATIVE CARE DEM23 ONSTRATION PROJECTS. 

24 (a) DEFINITIONS.—In this section: 
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1 (1) CARE COORDINATION SERVICES.—The term 

2 ‘‘care coordination services’’ means services that pro3 vide for the coordination of, and assistance with, re4 ferral for medical and other services, including mul5 tidisciplinary care conferences, coordination with 

6 other providers involved in care of the eligible child, 

7 patient and family caregiver education and coun8 seling, and such other services as the Secretary de9 termines to be appropriate in order to facilitate the 

10 coordination and continuity of care furnished to an 

11 individual. 

12 (2) DEMONSTRATION PROJECT.—The term 

13 ‘‘demonstration project’’ means a demonstration 

14 project established by the Secretary under sub15 section (b)(1). 

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

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

18 condition who is entitled to benefits under part A of 

19 the medicare program and who is under 18 years of 

20 age. 

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

22 provider’’ means— 

23 (A) a pediatric palliative care program that 

24 is a public agency or private organization (or a 

25 subdivision thereof) which— 
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1 (i)(I) is primarily engaged in pro2 viding the care and services described in 

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

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

5 such services available (as needed) on a 

6 24-hour basis and which also provides 

7 counseling (including bereavement coun8 seling) for the immediate family of eligible 

9 children; 

10 (II) provides for such care and serv11 ices in eligible children’s homes, on an out12 patient basis, and on a short-term inpa13 tient basis, directly or under arrangements 

14 made by the agency or organization, except 

15 that— 

16 (aa) the agency or organization 

17 must routinely provide directly sub18 stantially all of each of the services 

19 described in subparagraphs (A), (C), 

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

21 (bb) in the case of other services 

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

23 which are not provided directly by the 

24 agency or organization, the agency or 

25 organization must maintain profes-
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1 sional management responsibility for 

2 all such services furnished to an eligi3 ble child, regardless of the location or 

4 facility in which such services are fur5 nished; and 

6 (III)(aa) identifies medical, commu7 nity, and social service needs; 

8 (bb) simplifies access to service; 

9 (cc) uses the full range of community 

10 resources, including the friends and family 

11 of the eligible child; and 

12 (dd) provides educational opportuni13 ties relating to health care; and 

14 (ii) has an interdisciplinary group of 

15 personnel which— 

16 (I) includes at least— 

17 (aa) 1 physician (as defined 

18 in section 1861(r)(1) of the So19 cial Security Act (42 U.S.C. 

20 1395x(r)(1))); 

21 (bb) 1 registered profes22 sional nurse; and 

23 (cc) 1 social worker; 

24 employed by or, in the case of a physi25 cian described in item (aa), under 
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1 contract with the agency or organiza2 tion, and also includes at least 1 pas3 toral or other counselor; 

4 (II) provides (or supervises the provi5 sion of) the care and services described in 

6 such section 1861(dd)(1); and 

7 (III) establishes the policies governing 

8 the provision of such care and services; 

9 (iii) maintains central clinical records 

10 on all patients; 

11 (iv) does not discontinue the palliative 

12 care it provides with respect to an eligible 

13 child because of the inability of the eligible 

14 child to pay for such care; 

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

16 of care and services in accordance with 

17 standards set by the Secretary, which 

18 standards shall ensure a continuing level of 

19 effort to use such volunteers; and 

20 (II) maintains records on the use of 

21 these volunteers and the cost savings and 

22 expansion of care and services achieved 

23 through the use of these volunteers; 

24 (vi) in the case of an agency or orga25 nization in any State in which State or ap-
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1 plicable local law provides for the licensing 

2 of agencies or organizations of this nature, 

3 is licensed pursuant to such law; 

4 (vii) seeks to ensure that children and 

5 families receive complete, timely, under6 standable information about diagnosis, 

7 prognosis, treatments, and palliative care 

8 options; 

9 (viii) ensures that children and fami10 lies participate in effective and timely pre11 vention, assessment, and treatment of 

12 physical and psychological symptoms of 

13 distress; and 

14 (ix) meets such other requirements as 

15 the Secretary may find necessary in the in16 terest of the health and safety of the eligi17 ble children who are provided with pallia18 tive care by such agency or organization; 

19 and 

20 (B) any other individual or entity with an 

21 agreement under section 1866 of the Social Se22 curity Act (42 U.S.C. 1395cc) that— 

23 (i) has demonstrated experience in 

24 providing interdisciplinary team-based pal25 liative care and care coordination services 
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1 (as defined in paragraph (1)) to pediatric 

2 populations; and 

3 (ii) the Secretary determines is appro4 priate. 

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

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

7 such term by the Secretary (in consultation with 

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

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

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

11 the Secretary may not limit such term to individuals 

12 who are terminally ill (as defined in section 

13 1861(dd)(3) of the Social Security Act (42 U.S.C. 

14 1395x(dd)(3))). 

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

16 program’’ means the health benefits program under 

17 title XVIII of the Social Security Act (42 U.S.C. 

18 1395 et seq.). 

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

20 the Secretary of Health and Human Services. 

21 (b) PEDIATRIC PALLIATIVE CARE DEMONSTRATION

22 PROJECTS.— 

23 (1) ESTABLISHMENT.—The Secretary shall es24 tablish demonstration projects in accordance with 
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1 the provisions of this subsection to provide pediatric 

2 palliative care to eligible children. 

3 (2) PARTICIPATION.— 

4 (A) ELIGIBLE PROVIDERS.—Any eligible 

5 provider may furnish items or services covered 

6 under the pediatric palliative care benefit. 

7 (B) ELIGIBLE CHILDREN.—The Secretary 

8 shall permit any eligible child residing in the 

9 service area of an eligible provider participating 

10 in a demonstration project to participate in 

11 such project on a voluntary basis. 

12 (c) SERVICES UNDER DEMONSTRATION

13 PROJECTS.— 

14 (1) IN GENERAL.—Except as otherwise pro15 vided in this subsection, the provisions of section 

16 1814(i) of the Social Security Act (42 U.S.C. 

17 1395f(i)) shall apply to the payment for pediatric 

18 palliative care provided under the demonstration 

19 projects in the same manner in which such section 

20 applies to the payment for hospice care (as defined 

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

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

23 program. 

24 (2) COVERAGE OF PEDIATRIC PALLIATIVE

25 CARE.— 
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1 (A) IN GENERAL.—Notwithstanding sec2 tion 1862(a)(1)(C) of the Social Security Act 

3 (42 U.S.C. 1395y(a)(1)(C)), the Secretary shall 

4 provide for reimbursement for items and serv5 ices provided under the pediatric palliative care 

6 benefit made available under the demonstration 

7 projects in a manner that is consistent with the 

8 requirements of subparagraph (B). 

9 (B) BENEFIT.—Under the pediatric pallia10 tive care benefit, the following requirements 

11 shall apply: 

12 (i) WAIVER OF REQUIREMENT TO

13 ELECT HOSPICE CARE.—Each eligible child 

14 may receive benefits without an election 

15 under section 1812(d)(1) of the Social Se16 curity Act (42 U.S.C. 1395d(d)(1)) to re17 ceive hospice care (as defined in section 

18 1861(dd)(1) of such Act (42 U.S.C. 

19 1395x(dd)(1))) having been made with re20 spect to the eligible child. 

21 (ii) AUTHORIZATION FOR CURATIVE

22 TREATMENT.—Each eligible child may con23 tinue to receive benefits for disease and 

24 symptom modifying treatment under the 

25 medicare program. 
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1 (iii) PROVISION OF CARE COORDINA2 TION SERVICES.—Each eligible child shall 

3 receive care coordination services (as de4 fined in subsection (a)(1)) and hospice 

5 care (as so defined) through an eligible 

6 provider participating in a demonstration 

7 project, regardless of whether such indi8 vidual has been determined to be termi9 nally ill (as defined in section 1861(dd)(3) 

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

11 1395x(dd)(3))). 

12 (iv) AVAILABILITY OF INFORMATION

13 ON PEDIATRIC PALLIATIVE CARE.—Each 

14 eligible child and the family of such child 

15 shall receive information and education in 

16 order to better understand the utility of 

17 pediatric palliative care. 

18 (v) AVAILABILITY OF BEREAVEMENT

19 COUNSELING.—Each family of an eligible 

20 child shall receive bereavement counseling, 

21 if appropriate. 

22 (vi) ADDITIONAL BENEFITS.—Under 

23 the demonstration projects, the Secretary 

24 may include any other item or service— 
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1 (I) for which payment may other2 wise be made under the medicare pro3 gram; and 

4 (II) that is consistent with the 

5 recommendations contained in the re6 port published in 2003 by the Insti7 tute of Medicine of the National 

8 Academy of Sciences entitled ‘‘When 

9 Children Die: Improving Palliative 

10 and End-of-Life Care for Children 

11 and Their Families’’. 

12 (C) PAYMENT.— 

13 (i) ESTABLISHMENT OF PAYMENT

14 METHODOLOGY.—The Secretary shall es15 tablish a methodology for determining the 

16 amount of payment for pediatric palliative 

17 care furnished under the demonstration 

18 projects that is similar to the methodology 

19 for determining the amount of payment for 

20 hospice care (as defined in section 

21 1861(dd)(1) of the Social Security Act (42 

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

23 1814(i) of such Act (42 U.S.C. 1395f(i)), 

24 except as provided in the following sub25 clauses: 
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1 (I) AMOUNT OF PAYMENT.—Sub2 ject to subclauses (II) and (III), the 

3 amount of payment for pediatric pal4 liative care shall be equal to the 

5 amount that would be paid for hospice 

6 care (as so defined), increased by an 

7 appropriate percentage to account for 

8 the additional costs of providing be9 reavement counseling and care coordi10 nation services (as defined in sub11 section (a)(1)). 

12 (II) WAIVER OF HOSPICE CAP.—

13 The limitation under section 

14 1814(i)(2) of the Social Security Act 

15 (42 U.S.C. 1395f(i)(2)) shall not 

16 apply with respect to pediatric pallia17 tive care and amounts paid for pedi18 atric palliative care under this sub19 paragraph shall not be counted 

20 against the cap amount described in 

21 such section. 

22 (III) SEPARATE PAYMENT FOR

23 COUNSELING SERVICES.—Notwith24 standing section 1814(i)(1)(A) of the 

25 Social Security Act (42 U.S.C. 
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1 1395f(i)(1)(A)), the Secretary may 

2 pay for bereavement counseling as a 

3 separate service. 

4 (ii) SPECIAL RULES FOR PAYMENT OF

5 MEDICARE+CHOICE ORGANIZATIONS.—The 

6 Secretary shall establish procedures under 

7 which the Secretary provides for an appro8 priate adjustment in the monthly payments 

9 made under section 1853 of the Social Se10 curity Act (42 U.S.C. 1395w–23) to any 

11 Medicare+Choice organization that pro12 vides health care items or services to an el13 igible child who is participating in a dem14 onstration project. 

15 (3) COVERAGE OF PEDIATRIC PALLIATIVE CARE

16 CONSULTATION SERVICES.—Under the demonstra17 tion projects, the Secretary shall provide for a one18 time payment on behalf of each eligible child who 

19 has not yet elected to participate in the demonstra20 tion project for services that are furnished by a phy21 sician who is either the medical director or an em22 ployee of an eligible provider participating in such a 

23 project and that consist of— 
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1 (A) an evaluation of the individual’s need 

2 for pain and symptom management, including 

3 the need for pediatric palliative care; 

4 (B) counseling the individual and the fam5 ily of such individual with respect to the bene6 fits of pediatric palliative care and care options; 

7 and 

8 (C) if appropriate, advising the individual 

9 and the family of such individual regarding ad10 vanced care planning. 

11 (d) CONDUCT OF DEMONSTRATION PROJECTS.— 

12 (1) SITES.—The Secretary shall conduct dem13 onstration projects in at least 4, but not more than 

14 8, sites. 

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

16 select demonstration sites on the basis of proposals 

17 submitted under paragraph (3) that are located in 

18 geographic areas that— 

19 (A) include both urban and rural eligible 

20 providers; and 

21 (B) are geographically diverse and readily 

22 accessible to a significant number of eligible 

23 children. 

24 (3) PROPOSALS.—The Secretary shall accept 

25 proposals to furnish pediatric palliative care under 
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1 the demonstration projects from any eligible provider 

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

3 the Secretary may reasonably require. 

4 (4) FACILITATION OF EVALUATION.—The Sec5 retary shall design the demonstration projects to fa6 cilitate the evaluation conducted under subsection 

7 (e)(1). 

8 (5) DURATION.—The Secretary shall complete 

9 the demonstration projects within a period of 5 

10 years that includes a period of 1 year during which 

11 the Secretary shall complete the evaluation under 

12 subsection (e)(1). 

13 (e) EVALUATION AND REPORTS TO CONGRESS.— 

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

15 following the first 4 years of the demonstration 

16 projects, the Secretary shall complete an evaluation 

17 of the demonstration projects in order— 

18 (A) to determine the short-term and long19 term costs and benefits of changing— 

20 (i) hospice care (as defined in section 

21 1861(dd)(1) of the Social Security Act (42 

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

23 medicare program to children to include 

24 the pediatric palliative care furnished 

25 under the demonstration projects; and 
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1 (ii) the medicare program to permit 

2 eligible children to receive curative and pal3 liative care simultaneously; 

4 (B) to review the implementation of the 

5 demonstration projects compared to rec6 ommendations contained in the report published 

7 in 2003 by the Institute of Medicine of the Na8 tional Academy of Sciences entitled ‘‘When 

9 Children Die: Improving Palliative and End-of10 Life Care for Children and Their Families’’; 

11 (C) to determine the quality and duration 

12 of palliative care for individuals who receive 

13 such care under the demonstration projects who 

14 would not be eligible to receive such care under 

15 the medicare program; 

16 (D) whether any increase in payments for 

17 pediatric palliative care is offset by savings in 

18 other parts of the medicare program; and 

19 (E) the projected cost of implementing the 

20 demonstration projects on a national basis. 

21 (2) REPORTS.— 

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

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

24 demonstration projects are implemented, the 
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1 Secretary shall submit an interim report to 

2 Congress on the demonstration projects. 

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

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

5 demonstration projects end, the Secretary shall 

6 submit a final report to Congress on the dem7 onstration projects that includes the results of 

8 the evaluation conducted under paragraph (1) 

9 together with such recommendations for legisla10 tion or administrative action as the Secretary 

11 determines is appropriate. 

12 (f) WAIVER OF MEDICARE REQUIREMENTS.—The 

13 Secretary shall waive compliance with such requirements 

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

15 the Secretary finds necessary to conduct the demonstra16 tion projects. 

17 SEC. 202. PRIVATE SECTOR PEDIATRIC PALLIATIVE CARE 

18 DEMONSTRATION PROJECTS. 

19 (a) DEFINITIONS.—In this section: 

20 (1) DEMONSTRATION PROJECT.—The term 

21 ‘‘demonstration project’’ means a demonstration 

22 project established by the Secretary under sub23 section (b)(1). 
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1 (2) ELIGIBLE CHILD.—The term ‘‘eligible 

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

3 condition who is— 

4 (A) under 18 years of age; 

5 (B) enrolled for health benefits coverage 

6 under an eligible health plan; and 

7 (C) not enrolled under (or entitled to) ben8 efits under a health plan described in para9 graph (3)(C). 

10 (3) ELIGIBLE HEALTH PLAN.— 

11 (A) IN GENERAL.—Subject to subpara12 graphs (B) and (C), the term ‘‘eligible health 

13 plan’’ means an individual or group plan that 

14 provides, or pays the cost of, medical care (as 

15 such term is defined in section 2791 of the 

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

17 91)). 

18 (B) TYPES OF PLANS INCLUDED.—For 

19 purposes of subparagraph (A), the term ‘‘eligi20 ble health plan’’ includes the following health 

21 plans, and any combination thereof: 

22 (i) A group health plan (as defined in 

23 section 2791(a) of the Public Health Serv24 ice Act (42 U.S.C. 300gg–91(a))), but only 

25 if the plan— 
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1 (I) has 50 or more participants 

2 (as defined in section 3(7) of the Em3 ployee Retirement Income Security 

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

5 (II) is administered by an entity 

6 other than the employer who estab7 lished and maintains the plan. 

8 (ii) A health insurance issuer (as de9 fined in section 2791(b) of the Public 

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

11 91(b))). 

12 (iii) A health maintenance organiza13 tion (as defined in section 2791(b) of the 

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

15 300gg–91(b))). 

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

17 a nursing home fixed indemnity policy (un18 less the Secretary determines that such a 

19 policy does not provide sufficiently com20 prehensive coverage of a benefit so that the 

21 policy should be treated as a health plan). 

22 (v) An employee welfare benefit plan 

23 or any other arrangement which is estab24 lished or maintained for the purpose of of-
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1 fering or providing health benefits to the 

2 employees of 2 or more employers. 

3 (vi) Health benefits coverage provided 

4 under a contract under the Federal em5 ployees health benefits program under 

6 chapter 89 of title 5, United States Code. 

7 (C) TYPES OF PLANS EXCLUDED.—For 

8 purposes of subparagraph (A), the term ‘‘eligi9 ble health plan’’ does not include any of the fol10 lowing health plans: 

11 (i) The medicare program under title 

12 XVIII of the Social Security Act (42 

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

14 (ii) The medicaid program under title 

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

16 1396 et seq.). 

17 (iii) A medicare supplemental policy 

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

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

20 seq.). 

21 (iv) The health care program for ac22 tive military personnel under title 10, 

23 United States Code. 
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1 (v) The veterans health care program 

2 under chapter 17 of title 38, United States 

3 Code. 

4 (vi) The Civilian Health and Medical 

5 Program of the Uniformed Services 

6 (CHAMPUS), as defined in section 

7 1072(4) of title 10, United States Code. 

8 (vii) The Indian health service pro9 gram under the Indian Health Care Im10 provement Act (25 U.S.C. 1601 et seq.). 

11 (4) ELIGIBLE ORGANIZATION.—The term ‘‘eligi12 ble organization’’ means an organization that pro13 vides health benefits coverage under an eligible 

14 health plan. 

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

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

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

18 (6) PEDIATRIC PALLIATIVE CARE.—The term 

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

20 to be furnished under the demonstration projects 

21 under section 201, including care coordination serv22 ices (as defined in subsection (a)(1) of such section). 

23 (7) PEDIATRIC PALLIATIVE CARE CONSULTA24 TION SERVICES.—The term ‘‘pediatric palliative care 
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1 consultation services’’ means services of the type de2 scribed in section 201(c)(3). 

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

4 the Secretary of Health and Human Services, acting 

5 through the Director of the Agency for Healthcare 

6 Research and Quality. 

7 (b) NONMEDICARE PEDIATRIC PALLIATIVE CARE

8 DEMONSTRATION PROJECTS.— 

9 (1) ESTABLISHMENT.—The Secretary shall es10 tablish demonstration projects under this section at 

11 the same time as the Secretary establishes the dem12 onstration projects under section 201 and in accord13 ance with the provisions of this subsection to dem14 onstrate the provision of pediatric palliative care and 

15 pediatric palliative care consultation services to eligi16 ble children who are not entitled to (or enrolled for) 

17 coverage under the health plans described in sub18 section (a)(3)(C). 

19 (2) PARTICIPATION.— 

20 (A) ELIGIBLE ORGANIZATIONS.—The Sec21 retary shall permit any eligible organization to 

22 participate in a demonstration project on a vol23 untary basis. 

24 (B) ELIGIBLE CHILDREN.—Any eligible or25 ganization participating in a demonstration 
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1 project shall permit any eligible child enrolled in 

2 an eligible health plan offered by the organiza3 tion to participate in such project on a vol4 untary basis. 

5 (c) SERVICES UNDER DEMONSTRATION

6 PROJECTS.— 

7 (1) PROVISION OF PEDIATRIC PALLIATIVE CARE

8 AND CONSULTATION SERVICES.—Under a dem9 onstration project, each eligible organization electing 

10 to participate in the demonstration project shall pro11 vide pediatric palliative care and pediatric palliative 

12 care consultation services to each eligible child who 

13 is enrolled with the organization and who elects to 

14 participate in the demonstration project. 

15 (2) AVAILABILITY OF ADMINISTRATIVE

16 GRANTS.— 

17 (A) IN GENERAL.—Subject to subpara18 graph (B), the Secretary shall award grants to 

19 eligible organizations electing to participate in a 

20 demonstration project for the administrative 

21 costs incurred by the eligible organization in 

22 participating in the demonstration project, in23 cluding the costs of collecting and submitting 

24 the data required to be submitted under sub25 section (d)(4)(B). 
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1 (B) NO PAYMENT FOR SERVICES.—The 

2 Secretary may not pay eligible organizations for 

3 pediatric palliative care or pediatric palliative 

4 care consultation services furnished under the 

5 demonstration projects. 

6 (d) CONDUCT OF DEMONSTRATION PROJECTS.— 

7 (1) SITES.—The Secretary shall conduct dem8 onstration projects in at least 4, but not more than 

9 8, sites. 

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

11 select demonstration sites on the basis of proposals 

12 submitted under paragraph (3) that are located in 

13 geographic areas that— 

14 (A) include both urban and rural eligible 

15 organizations; and 

16 (B) are geographically diverse and readily 

17 accessible to a significant number of eligible 

18 children. 

19 (3) PROPOSALS.— 

20 (A) IN GENERAL.—The Secretary shall ac21 cept proposals to furnish pediatric palliative 

22 care and pediatric palliative care consultation 

23 services under the demonstration projects from 

24 any eligible organization at such time, in such 
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1 manner, and in such form as the Secretary may 

2 require. 

3 (B) APPLICATION FOR ADMINISTRATIVE

4 GRANTS.—If the eligible organization desires to 

5 receive an administrative grant under sub6 section (c)(2), the proposal submitted under 

7 subparagraph (A) shall include a request for 

8 the grant, specify the amount requested, and 

9 identify the purposes for which the organization 

10 will use any funds made available under the 

11 grant. 

12 (4) COLLECTION AND SUBMISSION OF DATA.— 

13 (A) COLLECTION.—Each eligible organiza14 tion participating in a demonstration project 

15 shall collect such data as the Secretary may re16 quire to facilitate the evaluation to be com17 pleted under subsection (e)(1). 

18 (B) SUBMISSION.—Each eligible organiza19 tion shall submit the data collected under sub20 paragraph (A) to the Secretary at such time, in 

21 such manner, and in such form as the Secretary 

22 may require. 

23 (5) DURATION.—The Secretary shall complete 

24 the demonstration projects within a period of 5 

25 years that includes a period of 1 year during which 
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1 the Secretary shall complete the evaluation under 

2 subsection (e)(1). 

3 (e) EVALUATION AND REPORTS TO CONGRESS AND

4 ELIGIBLE ORGANIZATIONS.— 

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

6 following the first 4 years of the demonstration 

7 projects, the Secretary shall complete an evaluation 

8 of the demonstration projects. 

(2) REPORTS.—