I 

110TH CONGRESS 

2D SESSION H. R. 5192 

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

IN THE HOUSE OF REPRESENTATIVES 

JANUARY 29, 2008 

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 ‘‘Children’s Compassionate Care Act of 2007’’. 

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. Pediatric palliative care training 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. Symposium on pediatric palliative care. 

Sec. 204. Evaluation and reports to Congress. 

Sec. 205. 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, acting 

13 through the Administrator of the Health Resources and 

14 Services Administration, may award grants to eligible en15 tities to provide training in pediatric palliative care and 

16 related services for children with life-threatening condi17 tions. 

18 ‘‘(b) ELIGIBLE ENTITY DEFINED.— 


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1 ‘‘(1) IN GENERAL.—In this section, the term 

2 ‘eligible entity’ means a health care provider that is 

3 affiliated with an academic institution, that is pro4 viding comprehensive interdisciplinary pediatric pal5 liative care services, alone or through an arrange6 ment with another entity, and that has dem7 onstrated experience in providing training and con8 sultative services in pediatric palliative care, includ9 ing— 

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

11 or medical centers with demonstrated, or ac12 tively developing, capacity in providing pallia13 tive care for children with life-threatening con14 ditions; 

15 ‘‘(B) pediatric hospices or hospices with 

16 significant pediatric palliative care programs; 

17 ‘‘(C) home health agencies with a dem18 onstrated or developing capacity to serve chil19 dren with life-threatening conditions and that 

20 provide pediatric palliative care; and 

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

22 determines is appropriate. 

23 ‘‘(2) LIFE-THREATENING CONDITION DE24 FINED.—In this subsection, the term ‘life-threat25 ening condition’ has the meaning given such term by 


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1 the Secretary (in consultation with hospice programs 

2 (as defined in section 1861(dd)(2) of the Social Se3 curity Act (42 U.S.C. 1395x(dd)(2))) and academic 

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

5 may not limit such term to individuals who are ter6 minally ill (as defined in section 1861(dd)(3) of the 

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

8 ‘‘(c) AUTHORIZED ACTIVITIES.—Grant funds award9 ed under subsection (a) shall be used to— 

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

11 programs in pediatric palliative care for the range of 

12 interdisciplinary health professionals and others pro13 viding such care; 

14 ‘‘(2) provide consultative services and guidance 

15 to health care providers that are developing and 

16 building comprehensive interdisciplinary pediatric 

17 palliative care programs; 

18 ‘‘(3) develop regional information outreach and 

19 other resources to assist clinicians and families in 

20 local and outlying communities and rural areas; 

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

22 educational materials being used in providing such 

23 education and guidance relating to pediatric pallia24 tive care; 


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

2 implementation of evidence-based (when available) 

3 and best practices (as available) clinical practice 

4 guidelines and institutional protocols and procedures 

5 for pediatric palliative, pain management, end-of-life, 

6 supportive, and bereavement care; and 

7 ‘‘(6) assure that children with life-threatening 

8 conditions and the families of such children are an 

9 integral part of these family-centered processes. 

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

11 are authorized to be appropriated to carry out this section 

12 $5,000,000 for each of fiscal years 2008 through 2012.’’. 

13 SEC. 102. GRANTS TO EXPAND PEDIATRIC PALLIATIVE 

14 CARE. 

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

16 (42 U.S.C. 280h et seq.) is amended by adding at the end 

17 the following: 

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

19 CARE. 

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

21 through the Administrator of the Health Resources and 

22 Services Administration, may award grants to eligible en23 tities to implement or expand pediatric palliative care pro24 grams for children with life-threatening conditions. 


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

2 the term ‘eligible entity’ means— 

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

4 a capacity (or those developing a capacity) and abil5 ity to care for children with life-threatening condi6 tions; 

7 ‘‘(2) hospices with a demonstrated or devel8 oping capacity and ability to provide palliative care 

9 (including symptom management, assistance with 

10 and support in decisionmaking) for children with 

11 life-threatening conditions and their families in a 

12 family-centered manner; and 

13 ‘‘(3) home health agencies with— 

14 ‘‘(A) a demonstrated capacity (or devel15 oping capacity) and ability to care for children 

16 with life-threatening conditions; and 

17 ‘‘(B) demonstrated expertise (or actively 

18 developing capacity) in providing pediatric pal19 liative care. 

20 ‘‘(c) AUTHORIZED ACTIVITIES.—Grant funds award21 ed under subsection (a) shall be used to— 

22 ‘‘(1) create new or expand existing pediatric 

23 palliative care programs; 

24 ‘‘(2) start or expand needed additional care set25 tings, such as respite, hospice, outpatient, inpatient 


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1 day services, or other care settings to provide a con2 tinuum of care across inpatient, home, and commu3 nity-based settings for pediatric palliative care; 

4 ‘‘(3) expand comprehensive pediatric palliative 

5 care services, including care coordination services, to 

6 greater numbers of children with life-threatening 

7 conditions and broader service areas, including re8 gional and rural outreach; and 

9 ‘‘(4) support communication linkages and care 

10 coordination, applying telemedicine and teleconfer11 encing technologies, and measures to improve both 

12 patient and family safety, and measures to improve 

13 efficacy and quality. 

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

15 grant under this section shall submit an application to the 

16 Administrator at such time, in such manner, and con17 taining such information as the Administrator may re18 quire. 

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

20 are authorized to be appropriated to carry out this section 

21 $10,000,000 for each of fiscal years 2008 through 2012.’’. 


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1 SEC. 103. PEDIATRIC PALLIATIVE CARE TRAINING AND 

2 RESIDENCY GRANTS. 

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

4 (42 U.S.C. 281 et seq.) is amended by adding at the end 

5 the following: 

6 ‘‘SEC. 404I. PEDIATRIC PALLIATIVE CARE TRAINING AND 

7 RESIDENCY GRANTS. 

8 ‘‘(a) ESTABLISHMENT.—The Director of the Na9 tional Institutes of Health is authorized to award training 

10 grants to eligible entities to expand the number of physi11 cians, nurses, mental health professionals, and appropriate 

12 allied health professionals and specialists (as determined 

13 by the Secretary) with interdisciplinary pediatric palliative 

14 clinical training and research experience. 

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

16 the term ‘eligible entity’ means— 

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

18 and other related departments including— 

19 ‘‘(A) oncology; 

20 ‘‘(B) virology; 

21 ‘‘(C) neurology; 

22 ‘‘(D) psychiatry; or 

23 ‘‘(E) pain medicine; 

24 ‘‘(2) a school of nursing (when partnering with 

25 physicians or a provider eligible to receive payments 


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1 under title XVIII of the Social Security Act (42 

2 U.S.C. 1395 et seq.), as available); 

3 ‘‘(3) a school of psychology (when partnering 

4 with physicians or a provider eligible to receive pay5 ments under title XVIII of the Social Security Act 

6 (42 U.S.C. 1395 et seq.), as available); 

7 ‘‘(4) a school of social work (when partnering 

8 with physicians or a provider eligible to receive pay9 ments under title XVIII of the Social Security Act 

10 (42 U.S.C. 1395 et seq.), as available); 

11 ‘‘(5) a children’s hospital or other hospital with 

12 demonstrated expertise or developing capacity to 

13 serve pediatric patients with life-threatening condi14 tions; and 

15 ‘‘(6) an entity that has access to a continuum 

16 of care such as acute care, inpatient, hospice, out17 patient, or home-based hospice to fully expose the 

18 trainee to palliative care. 

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

20 grant under this section shall submit an application to the 

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

22 such information as the Director may require. Such appli23 cation shall include a plan for evaluating outcomes. 


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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 2008 through 2012.’’. 

4 SEC. 104. MODEL PROGRAM GRANTS. 

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

6 (42 U.S.C. 280h et seq.), as amended by section 102, is 

7 further amended by adding at the end the following: 

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

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

10 grants to eligible entities to enhance pediatric palliative 

11 care and care for children with life-threatening conditions 

12 in general pediatric or family practice residency training 

13 programs and general or pediatric nursing education pro14 grams through the development of model interdisciplinary 

15 programs that partner with other health professional 

16 schools such as psychology, pharmacology, nursing, or so17 cial work, when practicable. 

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

19 the term ‘eligible entity’ means a provider eligible to re20 ceive payments under title XVIII of the Social Security 

21 Act (42 U.S.C. 1395 et seq.), in either a pediatric depart22 ment of— 

23 ‘‘(1) a medical school; 

24 ‘‘(2) a nursing school; 

25 ‘‘(3) a children’s hospital; or 


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1 ‘‘(4) any other hospital with a general pediatric 

2 or family practice residency program serving pedi3 atric patients with life-threatening conditions. 

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

5 grant under this section shall submit an application to the 

6 Administrator at such time, in such manner, and con7 taining such information as the Administrator may require 

8 (including a plan for evaluating outcomes). 

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

10 are authorized to be appropriated to carry out this section 

11 $5,000,000 for each of fiscal years 2008 through 2012.’’. 

12 SEC. 105. RESEARCH. 

13 (a) PAIN AND SYMPTOM MANAGEMENT.—The Direc14 tor of the National Institutes of Health (in this section 

15 referred to as the ‘‘Director’’) shall provide research 

16 grants to fund interdisciplinary research in pediatric pain 

17 and symptom management that will utilize existing facili18 ties of the National Institutes of Health including— 

19 (1) pediatric pharmacological research units; 

20 (2) clinical translational science awardees; and 

21 (3) other centers providing infrastructure for 

22 patient-oriented research. 

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

24 (a), the Director may award grants for the conduct of pe25 diatric pain and symptom management research to— 


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1 (1) children’s hospitals or other hospitals serv2 ing a significant number of children with life-threat3 ening conditions; 

4 (2) pediatric departments of medical schools; 

5 (3) pediatric departments of nursing schools; 

6 (4) institutions currently participating in Na7 tional Institutes of Health network of pediatric 

8 pharmacological research units; 

9 (5) hospices with pediatric palliative care pro10 grams and academic affiliations; 

11 (6) pediatric departments of social work 

12 schools; 

13 (7) pediatric departments of psychology schools; 

14 (8) pediatric departments of pharmacology 

15 schools; and 

16 (9) pediatric pain medicine programs. 

17 (c) AUTHORIZATION OF APPROPRIATIONS.—There 

18 are authorized to be appropriated to carry out this section 

19 $10,000,000, to remain available until expended. 

20 TITLE II—PEDIATRIC PALLIA21 TIVE CARE DEMONSTRATION 

22 PROJECTS 

23 SEC. 201. MEDICARE PEDIATRIC PALLIATIVE CARE DEM24 ONSTRATION PROJECTS. 

25 (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 clinical and other services, including inter5 disciplinary care conferences, coordination with other 

6 providers involved in caring for the eligible child 

7 with a life-threatening condition, patient and family8 centered caregiver education and counseling, and 

9 such other services as the Secretary determines to be 

10 appropriate in order to facilitate the coordination 

11 and continuity of care furnished to an eligible child 

12 and the family of such child. 

13 (2) DEMONSTRATION PROJECT.—The term 

14 ‘‘demonstration project’’ means a demonstration 

15 project established by the Secretary under sub16 section (b)(1). 

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

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

19 condition who is entitled to benefits under part A of 

20 the Medicare program and who is under 21 years of 

21 age. 

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

23 provider’’ means— 


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1 (A) a pediatric palliative care program that 

2 is a public agency or private organization (or a 

3 subdivision thereof) which— 

4 (i)(I) is primarily engaged in pro5 viding the care and services described in 

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

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

8 such services available (as needed) on a 

9 24-hour basis and which also provides fam10 ily-centered counseling (including sup11 portive and bereavement counseling) for 

12 the eligible child and the immediate family 

13 of such child; 

14 (II) provides for such care and serv15 ices in eligible children’s homes, on an out16 patient basis, and on a short-term inpa17 tient basis, directly or under arrangements 

18 made by the agency or organization, except 

19 that— 

20 (aa) the agency or organization 

21 must routinely provide directly sub22 stantially all of each of the services 

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

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


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1 (bb) in the case of other services 

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

3 which are not provided directly by the 

4 agency or organization, the agency or 

5 organization must maintain profes6 sional management responsibility for 

7 all such services furnished to an eligi8 ble child and the family of such child, 

9 regardless of the location or facility in 

10 which such services are furnished; and 

11 (III)(aa) identifies medical, commu12 nity, and social service needs; 

13 (bb) simplifies access to service; 

14 (cc) uses the full range of community 

15 resources, including the friends and family 

16 of the eligible child; and 

17 (dd) provides educational opportuni18 ties relating to health care; and 

19 (ii) has an interdisciplinary group of 

20 personnel which— 

21 (I) includes at least— 

22 (aa) 1 physician (as defined 

23 in section 1861(r)(1) of the So24 cial Security Act (42 U.S.C. 

25 1395x(r)(1))); 


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1 (bb) 1 registered profes2 sional nurse; 

3 (cc) 1 licensed mental health 

4 professional; and 

5 (dd) 1 licensed social work6 er; 

7 employed by or, in the case of a physi8 cian described in item (aa), under 

9 contract with the agency or organiza10 tion; 

11 (II) provides (or supervises the provi12 sion of) the care and services described in 

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

14 (III) establishes the policies governing 

15 the provision of such care and services; 

16 (iii) maintains central clinical records 

17 on all patients; 

18 (iv) does not discontinue the palliative 

19 care it provides with respect to an eligible 

20 child and the family of such child because 

21 of the inability of the eligible child to pay 

22 for such care; 

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

24 of care and services in accordance with 

25 standards set by the Secretary, which 


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1 standards shall ensure a continuing level of 

2 effort to use such volunteers; and 

3 (II) maintains records on the use of 

4 these volunteers and the cost savings and 

5 expansion of care and services achieved 

6 through the use of these volunteers; 

7 (vi) in the case of an agency or orga8 nization in any State in which State or ap9 plicable local law provides for the licensing 

10 of agencies or organizations of this nature, 

11 is licensed pursuant to such law; 

12 (vii) seeks to ensure that eligible chil13 dren and their families receive complete, 

14 timely, understandable information about 

15 diagnosis, prognosis, treatments, and pal16 liative care options; 

17 (viii) seeks to ensure access to routine 

18 pediatric care as appropriate for the eligi19 ble child; 

20 (ix) ensures that children and their 

21 families participate in effective and timely 

22 prevention, assessment, and treatment of 

23 physical and psychological symptoms of 

24 distress; and 


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1 (x) meets such other requirements as 

2 the Secretary may find necessary in the in3 terest of the health and safety of the eligi4 ble children who are provided with pallia5 tive care by such agency or organization; 

6 and 

7 (B) any other individual or entity with an 

8 agreement under section 1866 of the Social Se9 curity Act (42 U.S.C. 1395cc) that— 

10 (i) has demonstrated expertise in pro11 viding palliative care to pediatric popu12 lations; and 

13 (ii) the Secretary determines is appro14 priate. 

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

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

17 such term by the Secretary (in consultation with 

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

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

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

21 the Secretary may not limit such term to individuals 

22 who are terminally ill (as defined in section 

23 1861(dd)(3) of the Social Security Act (42 U.S.C. 

24 1395x(dd)(3))). 


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1 (6) MEDICARE PROGRAM.—The term ‘‘Medicare 

2 program’’ means the health benefits program under 

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

4 1395 et seq.). 

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

6 the Secretary of Health and Human Services. 

7 (b) PEDIATRIC PALLIATIVE CARE DEMONSTRATION

8 PROJECTS.— 

9 (1) ESTABLISHMENT.—The Secretary shall es10 tablish demonstration projects in accordance with 

11 the provisions of this subsection to provide pediatric 

12 palliative care to eligible children. 

13 (2) PARTICIPATION.— 

14 (A) ELIGIBLE PROVIDERS.—Any eligible 

15 provider may furnish items or services covered 

16 under the pediatric palliative care benefit. 

17 (B) ELIGIBLE CHILDREN.—The Secretary 

18 shall permit any eligible child residing in the 

19 service area of an eligible provider participating 

20 in a demonstration project to participate in 

21 such project on a voluntary basis. 

22 (c) SERVICES UNDER DEMONSTRATION

23 PROJECTS.— 

24 (1) IN GENERAL.—Except as otherwise pro25 vided in this subsection, the provisions of section 


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1 1814(i) of the Social Security Act (42 U.S.C. 

2 1395f(i)) shall apply to the payment for pediatric 

3 palliative care provided under the demonstration 

4 projects in the same manner in which such section 

5 applies to the payment for hospice care (as defined 

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

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

8 program. 

9 (2) COVERAGE OF PEDIATRIC PALLIATIVE

10 CARE.— 

11 (A) IN GENERAL.—Notwithstanding sec12 tion 1862(a)(1)(C) of the Social Security Act 

13 (42 U.S.C. 1395y(a)(1)(C)), the Secretary shall 

14 provide for reimbursement for items and serv15 ices provided under the pediatric palliative care 

16 benefit made available under the demonstration 

17 projects in a manner that is consistent with the 

18 requirements of subparagraph (B). 

19 (B) BENEFIT.—Under the pediatric pallia20 tive care benefit, the following requirements 

21 shall apply: 

22 (i) WAIVER OF REQUIREMENT TO

23 ELECT HOSPICE CARE.—Each eligible child 

24 may receive benefits without an election 

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1 curity Act (42 U.S.C. 1395d(d)(1)) to re2 ceive hospice care (as defined in section 

3 1861(dd)(1) of such Act (42 U.S.C. 

4 1395x(dd)(1))) having been made with re5 spect to the eligible child. 

6 (ii) AUTHORIZATION FOR CURATIVE

7 TREATMENT.—Each eligible child may con8 tinue to receive benefits for disease and 

9 symptom modifying treatment under the 

10 Medicare program. 

11 (iii) PROVISION OF CARE COORDINA12 TION SERVICES.—Each eligible child shall 

13 receive care coordination services (as de14 fined in subsection (a)(1)) and hospice 

15 care (as so defined) through an eligible 

16 provider participating in a demonstration 

17 project, regardless of whether such indi18 vidual has been determined to be termi19 nally ill (as defined in section 1861(dd)(3) 

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

21 1395x(dd)(3))). 

22 (iv) AVAILABILITY OF INFORMATION

23 ON PEDIATRIC PALLIATIVE CARE.—Each 

24 eligible child and the family of such child 

25 shall receive information and education in 


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1 order to better understand the utility of 

2 pediatric palliative care. 

3 (v) AVAILABILITY OF SUPPORTIVE

4 AND BEREAVEMENT COUNSELING.—Each 

5 eligible child and the family of such child 

6 shall receive supportive counseling and be7 reavement counseling, if appropriate. 

8 (vi) PROVISION OF INDIVIDUAL

9 CARE.—Each eligible child and the family 

10 of such child shall receive appropriate care 

11 that is— 

12 (I) designed to fit the child’s 

13 physical, cognitive, emotional, and 

14 spiritual level of development that 

15 shall involve and respect both the 

16 child and the family of such child; and 

17 (II) effective and compassionate 

18 from diagnosis through death and be19 reavement. 

20 (vii) PROFESSIONAL EDUCATION.— 

21 Each professional caring for an eligible 

22 child shall have special responsibilities for 

23 educating themself and others about the 

24 identification, management, and discussion 


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1 of the last phase of a child’s fatal medical 

2 problem. 

3 (viii) ADDITIONAL BENEFITS.—Under 

4 the demonstration projects, the Secretary 

5 may include any other item or service— 

6 (I) for which payment may other7 wise be made under the Medicare pro8 gram; and 

9 (II) that is consistent with the 

10 recommendations contained in the re11 port published in 2003 by the Insti12 tute of Medicine of the National 

13 Academy of Sciences entitled ‘‘When 

14 Children Die: Improving Palliative 

15 and End-of-Life Care for Children 

16 and Their Families’’. 

17 (C) PAYMENT.— 

18 (i) ESTABLISHMENT OF PAYMENT

19 METHODOLOGY.—The Secretary shall es20 tablish a methodology for determining the 

21 amount of payment for pediatric palliative 

22 care furnished under the demonstration 

23 projects that is similar to the methodology 

24 for determining the amount of payment for 

25 hospice care (as defined in section 


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

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

3 1814(i) of such Act (42 U.S.C. 1395f(i)), 

4 except as provided in the following sub5 clauses: 

6 (I) AMOUNT OF PAYMENT.—Sub7 ject to subclauses (II) and (III), the 

8 amount of payment for pediatric pal9 liative care shall be equal to the 

10 amount that would be paid for hospice 

11 care (as so defined), increased by an 

12 appropriate percentage to account for 

13 the additional costs of providing sup14 portive and bereavement counseling 

15 and care coordination services (as de16 fined in subsection (a)(1)). 

17 (II) WAIVER OF HOSPICE CAP.— 

18 The limitation under section 

19 1814(i)(2) of the Social Security Act 

20 (42 U.S.C. 1395f(i)(2)) shall not 

21 apply with respect to pediatric pallia22 tive care and amounts paid for pedi23 atric palliative care under this sub24 paragraph shall not be counted 


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1 against the cap amount described in 

2 such section. 

3 (III) SEPARATE PAYMENT FOR

4 COUNSELING SERVICES.—Notwith5 standing section 1814(i)(1)(A) of the 

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

7 1395f(i)(1)(A)), the Secretary may 

8 pay for bereavement counseling as a 

9 separate service. 

10 (ii) SPECIAL RULES FOR PAYMENT OF

11 MEDICARE+CHOICE ORGANIZATIONS.—The 

12 Secretary shall establish procedures under 

13 which the Secretary provides for an appro14 priate adjustment in the monthly payments 

15 made under section 1853 of the Social Se16 curity Act (42 U.S.C. 1395w–23) to any 

17 Medicare+Choice organization that pro18 vides health care items or services to an el19 igible child who is participating in a dem20 onstration project. 

21 (3) COVERAGE OF PEDIATRIC PALLIATIVE CARE

22 CONSULTATION SERVICES.—Under the demonstra23 tion projects, the Secretary shall provide for a one24 time payment on behalf of each eligible child who 

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1 tion project for services that are furnished by a phy2 sician or advanced practice registered nurse who is 

3 either the medical or nursing director or an em4 ployee of a provider eligible to receive payments 

5 under title XVIII of the Social Security Act (42 

6 U.S.C. 1395 et seq.) participating in such a project 

7 and that consist of— 

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

9 for pain and symptom management, including 

10 the need for pediatric palliative care; 

11 (B) counseling the individual and the fam12 ily of such individual with respect to the bene13 fits of pediatric palliative care and care options; 

14 (C) if appropriate, advising the individual 

15 and the family of such individual regarding ad16 vanced care planning; and 

17 (D) care coordination. 

18 (d) CONDUCT OF DEMONSTRATION PROJECTS.— 

19 (1) SITES.—The Secretary shall conduct dem20 onstration projects in not less than 4, but not more 

21 than 8, sites. 

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

23 select demonstration sites on the basis of proposals 

24 submitted under paragraph (3) that are located in 

25 geographic areas that— 


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1 (A) include both urban and rural eligible 

2 organizations; 

3 (B) are geographically diverse and readily 

4 accessible to eligible children; and 

5 (C) take into account adequate representa6 tion of children of ethnic and racial minorities. 

7 (3) PROPOSALS.—The Secretary shall accept 

8 proposals to furnish pediatric palliative care under 

9 the demonstration projects from any eligible provider 

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

11 the Secretary may reasonably require. 

12 (4) FACILITATION OF EVALUATION.—The Sec13 retary shall design the demonstration projects to fa14 cilitate the evaluation conducted under subsection 

15 (e)(1). 

16 (5) DURATION.—The Secretary shall complete 

17 the demonstration projects within a period of 5 

18 years that includes a period of 1 year during which 

19 the Secretary shall complete the evaluation under 

20 section 204. 

21 (e) WAIVER OF MEDICARE REQUIREMENTS.—The 

22 Secretary shall waive compliance with such requirements 

23 of the Medicare program to the extent and for the period 

24 the Secretary finds necessary to conduct the demonstra25 tion projects. 


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1 SEC. 202. PRIVATE SECTOR PEDIATRIC PALLIATIVE CARE 

2 DEMONSTRATION PROJECTS. 

3 (a) DEFINITIONS.—In this section: 

4 (1) CARE COORDINATION SERVICES.—The term 

5 ‘‘care coordination services’’ has the meaning given 

6 the term in section 201. 

7 (2) DEMONSTRATION PROJECT.—The term 

8 ‘‘demonstration project’’ means a demonstration 

9 project established by the Secretary under sub10 section (b)(1). 

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

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

13 condition who is— 

14 (A) under 21 years of age; 

15 (B) enrolled for health benefits coverage 

16 under an eligible health plan; and 

17 (C) not enrolled under (or entitled to) ben18 efits under a health plan described in para19 graph (5)(C). 

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

21 provider’’ has the meaning given the term in section 

22 201. 

23 (5) ELIGIBLE HEALTH PLAN.— 

24 (A) IN GENERAL.—Subject to subpara25 graphs (B) and (C), the term ‘‘eligible health 

26 plan’’ means an individual or group plan that 


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

2 such term is defined in section 2791 of the 

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

4 91)). 

5 (B) TYPES OF PLANS INCLUDED.—For 

6 purposes of subparagraph (A), the term ‘‘eligi7 ble health plan’’ includes the following health 

8 plans, and any combination thereof: 

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

10 section 2791(a) of the Public Health Serv11 ice Act (42 U.S.C. 300gg–91(a))), but only 

12 if the plan— 

13 (I) has 50 or more participants 

14 (as defined in section 3(7) of the Em15 ployee Retirement Income Security 

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

17 (II) is administered by an entity 

18 other than the employer who estab19 lished and maintains the plan. 

20 (ii) A health insurance issuer (as de21 fined in section 2791(b) of the Public 

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

23 91(b))). 

24 (iii) A health maintenance organiza25 tion (as defined in section 2791(b) of the 


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

2 300gg–91(b))). 

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

4 a nursing home fixed indemnity policy (un5 less the Secretary determines that such a 

6 policy does not provide sufficiently com7 prehensive coverage of a benefit so that the 

8 policy should be treated as a health plan). 

9 (v) An employee welfare benefit plan 

10 or any other arrangement which is estab11 lished or maintained for the purpose of of12 fering or providing health benefits to the 

13 employees of 2 or more employers. 

14 (vi) Health benefits coverage provided 

15 under a contract under the Federal em16 ployees health benefits program under 

17 chapter 89 of title 5, United States Code. 

18 (C) TYPES OF PLANS EXCLUDED.—For 

19 purposes of subparagraph (A), the term ‘‘eligi20 ble health plan’’ does not include any of the fol21 lowing health plans: 

22 (i) The Medicare program under title 

23 XVIII of the Social Security Act (42 

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


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1 (ii) The Medicaid program under title 

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

3 1396 et seq.). 

4 (iii) A Medicare supplemental policy 

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

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

7 seq.). 

8 (iv) The health care program for ac9 tive military personnel under title 10, 

10 United States Code. 

11 (v) The veterans health care program 

12 under chapter 17 of title 38, United States 

13 Code. 

14 (vi) The Civilian Health and Medical 

15 Program of the Uniformed Services 

16 (CHAMPUS), as defined in section 

17 1072(4) of title 10, United States Code. 

18 (vii) The Indian health service pro19 gram under the Indian Health Care Im20 provement Act (25 U.S.C. 1601 et seq.). 

21 (6) ELIGIBLE ORGANIZATION.—The term ‘‘eligi22 ble organization’’ means an organization that pro23 vides health benefits coverage under an eligible 

24 health plan. 


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1 (7) LIFE-THREATENING CONDITION.—The term 

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

3 the term in section 201. 

4 (8) MEDICARE PROGRAM.—The term ‘‘Medicare 

5 program’’ means the health benefits program under 

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

7 1395 et seq.). 

8 (9) PEDIATRIC PALLIATIVE CARE.—The term 

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

10 to be furnished under the demonstration projects 

11 under section 201, including care coordination serv12 ices. 

13 (10) PEDIATRIC PALLIATIVE CARE CONSULTA14 TION SERVICES.—The term ‘‘pediatric palliative care 

15 consultation services’’ means services of the type de16 scribed in section 201(c)(3). 

17 (11) SECRETARY.—The term ‘‘Secretary’’ 

18 means the Secretary of Health and Human Services, 

19 acting through the Director of the Agency for 

20 Healthcare Research and Quality. 

21 (b) NONMEDICARE PEDIATRIC PALLIATIVE CARE

22 DEMONSTRATION PROJECTS.— 

23 (1) ESTABLISHMENT.—The Secretary shall es24 tablish demonstration projects under this section at 

25 the same time as the Secretary establishes the demVerDate Aug 31 2005 03:35 Jan 31, 2008 Jkt 069200 PO 00000 Frm 00032 Fmt 6652 Sfmt 6201 E:\BILLS\H5192.IH H5192

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1 onstration projects under section 201 and in accord2 ance with the provisions of this subsection to dem3 onstrate the provision of pediatric palliative care and 

4 pediatric palliative care consultation services to eligi5 ble children who are not entitled to (or enrolled for) 

6 coverage under the health plans described in sub7 section (a)(3)(C). 

8 (2) PARTICIPATION.— 

9 (A) ELIGIBLE ORGANIZATIONS.—The Sec10 retary shall permit any eligible organization to 

11 participate in a demonstration project on a vol12 untary basis. 

13 (B) ELIGIBLE CHILDREN.—Any eligible or14 ganization participating in a demonstration 

15 project shall permit any eligible child enrolled in 

16 an eligible health plan offered by the organiza17 tion to participate in such project on a vol18 untary basis. 

19 (c) SERVICES UNDER DEMONSTRATION

20 PROJECTS.— 

21 (1) PROVISION OF PEDIATRIC PALLIATIVE CARE

22 AND CONSULTATION SERVICES.—Under a dem23 onstration project, each eligible organization electing 

24 to participate in the demonstration project shall pro25 vide pediatric palliative care and pediatric palliative 


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•HR 5192 IH

1 care consultation services to each eligible child who 

2 is enrolled with the organization and who elects to 

3 participate in the demonstration project. Under the 

4 pediatric palliative care benefit, the following re5 quirements shall apply: 

6 (A) WAIVER OF REQUIREMENT TO ELECT

7 HOSPICE CARE.—Each eligible child may receive 

8 benefits without an election under section 

9 1812(d)(1) of the Social Security Act (42 

10 U.S.C. 1395d(d)(1)) to receive hospice care (as 

11 defined in section 1861(dd)(1) of such Act (42 

12 U.S.C. 1395x(dd)(1))) having been made with 

13 respect to the eligible child. 

14 (B) AUTHORIZATION FOR CURATIVE

15 TREATMENT.—Each eligible child may continue 

16 to receive benefits for disease and symptom 

17 modifying treatment under the Medicare pro18 gram. 

19 (C) PROVISION OF CARE COORDINATION

20 SERVICES.—Each eligible child shall receive 

21 care coordination services (as defined in sub22 section (a)(1)) and hospice care (as so defined) 

23 through an eligible provider participating in a 

24 demonstration project, regardless of whether 

25 such individual has been determined to be terVerDate Aug 31 2005 03:35 Jan 31, 2008 Jkt 069200 PO 00000 Frm 00034 Fmt 6652 Sfmt 6201 E:\BILLS\H5192.IH H5192

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1 minally ill (as defined in section 1861(dd)(3) of 

2 the Social Security Act (42 U.S.C. 

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

4 (D) AVAILABILITY OF INFORMATION ON

5 PEDIATRIC PALLIATIVE CARE.—Each eligible 

6 child and the family of such child shall receive 

7 information and education in order to better 

8 understand the utility of pediatric palliative 

9 care. 

10 (E) AVAILABILITY OF SUPPORTIVE AND

11 BEREAVEMENT COUNSELING.—Each eligible 

12 child and the family of such child shall receive 

13 supportive counseling and bereavement coun14 seling, if appropriate. 

15 (F) PROVISION OF INDIVIDUAL CARE.— 

16 Each eligible child and the family of such child 

17 shall receive appropriate care— 

18 (i) that is designed to fit the child’s 

19 physical, cognitive, emotional, and spiritual 

20 level of development that shall involve and 

21 respect both the child and the family of 

22 such child; 

23 (ii) that is effective and compas24 sionate from diagnosis through death and 

25 bereavement; 


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•HR 5192 IH

1 (iii) that involves and respects both 

2 the eligible child and the family of the eli3 gible child; and 

4 (iv) in which the family of the eligible 

5 child is a part of the care team. 

6 (G) PROFESSIONAL EDUCATION.—Each 

7 professional caring for an eligible child shall 

8 have special responsibilities for educating 

9 themself and others about the identification, 

10 management, and discussion of the last phase 

11 of a child’s fatal medical problem. 

12 (H) ADDITIONAL BENEFITS.—Under the 

13 demonstration projects, the Secretary may in14 clude any other item or service that is con15 sistent with the recommendations contained in 

16 the report published in 2003 by the Institute of 

17 Medicine of the National Academy of Sciences 

18 entitled ‘‘When Children Die: Improving Pallia19 tive and End-of-Life Care for Children and 

20 Their Families’’. 

21 (2) AVAILABILITY OF ADMINISTRATIVE

22 GRANTS.— 

23 (A) IN GENERAL.—Subject to subpara24 graph (B), the Secretary shall award grants to 

25 eligible organizations electing to participate in a 


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•HR 5192 IH

1 demonstration project for the administrative 

2 costs incurred by the eligible organization in 

3 participating in the demonstration project (in4 cluding care coordination), including the costs 

5 of collecting and submitting the data required 

6 to be submitted under subsection (d)(4)(B). 

7 (B) NO PAYMENT FOR SERVICES.—The 

8 Secretary may not pay eligible organizations for 

9 pediatric palliative care or pediatric palliative 

10 care consultation services furnished under the 

11 demonstration projects. 

12 (d) CONDUCT OF DEMONSTRATION PROJECTS.— 

13 (1) SITES.—The Secretary shall conduct dem14 onstration projects in not less than 4, but not more 

15 than 8, sites. 

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

17 select demonstration sites on the basis of proposals 

18 submitted under paragraph (3) that are located in 

19 geographic areas that— 

20 (A) include both urban and rural eligible 

21 organizations; 

22 (B) are geographically diverse and readily 

23 accessible to a significant number of eligible 

24 children; and 


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•HR 5192 IH

1 (C) take into account adequate representa2 tion of children of ethnic and racial minorities. 

3 (3) PROPOSALS.— 

4 (A) IN GENERAL.—The Secretary shall ac5 cept proposals to furnish pediatric palliative 

6 care and pediatric palliative care consultation 

7 services under the demonstration projects from 

8 any eligible organization at such time, in such 

9 manner, and in such form as the Secretary may 

10 require. 

11 (B) APPLICATION FOR ADMINISTRATIVE

12 GRANTS.—If the eligible organization desires to 

13 receive an administrative grant under sub14 section (c)(2), the proposal submitted under 

15 subparagraph (A) shall include a request for 

16 the grant, specify the amount requested, and 

17 identify the purposes for which the organization 

18 will use any funds made available under the 

19 grant. 

20 (4) COLLECTION AND SUBMISSION OF DATA.— 

21 (A) COLLECTION.—Each eligible organiza22 tion participating in a demonstration project 

23 shall collect such data as the Secretary may re24 quire to facilitate the evaluation to be com25 pleted under section 204. 


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•HR 5192 IH

1 (B) SUBMISSION.—Each eligible organiza2 tion shall submit the data collected under sub3 paragraph (A) to the Secretary at such time, in 

4 such manner, and in such form as the Secretary 

5 may require. 

6 (5) DURATION.—The Secretary shall complete 

7 the demonstration projects within a period of 5 

8 years that includes a period of 1 year during which 

9 the Secretary shall complete the evaluation under 

10 section 204. 

11 SEC. 203. SYMPOSIUM ON PEDIATRIC PALLIATIVE CARE. 

12 (a) CONVENING A SYMPOSIUM.—The Secretary of 

13 Health and Human Services shall convene a symposium 

14 on Pediatric Palliative Care (in this section referred to as 

15 the ‘‘symposium’’). The symposium shall occur not later 

16 than June 30, 2008. 

17 (b) PURPOSES.—The purposes of the symposium 

18 shall be to— 

19 (1) assess the initial response to the Institute 

20 of Medicine’s 2003 report on ‘‘When Children Die: 

21 Improving Palliative and End-of-Life Care for Chil22 dren and Their Families’’; and 

23 (2) increase awareness of a child’s life-threat24 ening condition or death on the child, the family of 

25 the child, and society as a whole, and the importance 


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•HR 5192 IH

1 of providing quality pediatric palliative care to chil2 dren with life-threatening conditions and the families 

3 of such children in the United States. 

4 (c) ATTENDEES.—The Secretary of Health and 

5 Human Services, or the designee of the Secretary, shall 

6 attend the symposium along with other nongovernmental 

7 organizations, interested parties, and clinicians. 

8 (d) REPORT.—The symposium shall report to the 

9 Secretary of Health and Human Services and the appro10 priate committees of Congress on recommendations de11 rived from the symposium and on the status of depart12 mental research activities concerning palliative care for 

13 children with life-threatening conditions. 

14 (e) AUTHORIZATION OF APPROPRIATIONS.—There 

15 are authorized to be appropriated to carry out this section 

16 $300,000 for fiscal year 2008. 

17 SEC. 204. EVALUATION AND REPORTS TO CONGRESS. 

18 (a) EVALUATIONS.—During the 1-year period fol19 lowing the first 4 years of the demonstration projects, the 

20 Secretary shall complete an evaluation of the demonstra21 tion projects using outcomes in order— 

22 (1) to determine the short-term and long-term 

23 costs and benefits of changing hospice care (as de24 fined in section 1861(dd)(1) of the Social Security 


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•HR 5192 IH

1 Act (42 U.S.C. 1395x(dd)(1))) provided under the 

2 Medicare program to children, to include— 

3 (A) the pediatric palliative care furnished 

4 under the demonstration projects; and 

5 (B) the Medicare program to permit eligi6 ble children to receive curative and palliative 

7 care simultaneously; 

8 (2) to review the implementation of the dem9 onstration projects compared to recommendations 

10 contained in the report published in 2003 by the In11 stitute of Medicine of the National Academy of 

12 Sciences entitled ‘‘When Children Die: Improving 

13 Palliative and End-of-Life Care for Children and 

14 Their Families’’; 

15 (3) to determine the quality and duration of 

16 palliative care for individuals who receive such care 

17 under the demonstration projects who would not be 

18 eligible to receive such care under the Medicare pro19 gram; 

20 (4) to determine whether any increase in pay21 ments for pediatric palliative care is offset by sav22 ings in other parts of the Medicare program; and 

23 (5) to determine the projected cost of imple24 menting the demonstration projects on a national 

25 basis. 


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1 (b) REPORTS.— 

2 (1) INTERIM REPORT.—Not later than the date 

3 that is 2 years after the date on which the dem4 onstration projects are implemented, the Secretary 

5 shall submit an interim report to Congress on the 

6 demonstration projects. 

7 (2) FINAL REPORT.—Not later than the date 

8 that is 1 year after the date on which the dem9 onstration projects end, the Secretary shall submit a 

10 final report to Congress on the demonstration 

11 projects that includes the results of the evaluation 

12 conducted under paragraph (1) together with such 

13 recommendations for legislation or administrative 

14 action as the Secretary determines is appropriate. 

15 SEC. 205. AUTHORIZATION OF APPROPRIATIONS. 

16 (a) IN GENERAL.—There are authorized to be appro17 priated— 

18 (1) $2,500,000, to carry out the demonstration 

19 projects under section 201; 

20 (2) $2,500,000, to carry out the demonstration 

21 projects under section 202, including for awarding 

22 grants under subsection (c)(2) of such section; and 

23 (3) $300,000, to carry out section 203. 


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1 (b) AVAILABILITY.—Sums appropriated under sub2 section (a) shall remain available without fiscal year limi3 tation until expended. 

Æ 


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