II 

110TH CONGRESS 

1ST SESSION S. 464 

To amend titles XVIII and XIX of the Social Security Act to improve 

the requirements regarding advance directives in order to ensure that 

an individual’s health care decisions are complied with, and for other 

purposes. 

IN THE SENATE OF THE UNITED STATES 

JANUARY 31, 2007 

Mr. ROCKEFELLER (for himself, Ms. COLLINS, and Mr. NELSON of Florida) 

introduced the following bill; which was read twice and referred to the 

Committee on Finance 

A BILL 

To amend titles XVIII and XIX of the Social Security Act 

to improve the requirements regarding advance directives 

in order to ensure that an individual’s health care decisions are complied with, 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 ‘‘Advance Planning and Compassionate Care Act of 

6 2007’’. 


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

2 this Act is as follows: 

Sec. 1. Short title; table of contents. 

Sec. 2. Development of standards to assess end-of-life care. 

Sec. 3. Study and report by the Secretary of Health and Human Services regarding the establishment and implementation of a national 

uniform policy on advance directives. 

Sec. 4. Improvement of policies related to the use of advance directives. 

Sec. 5. National information hotline for end-of-life decisionmaking and hospice 

care. 

Sec. 6. Demonstration project for innovative and new approaches to end-of-life 

care for Medicare, Medicaid, and SCHIP beneficiaries. 

Sec. 7. Establishment of End-of-Life Care Advisory Board. 

3 SEC. 2. DEVELOPMENT OF STANDARDS TO ASSESS END-OF4 LIFE CARE. 

5 (a) IN GENERAL.—The Secretary of Health and 

6 Human Services, in consultation with the Administrator 

7 of the Centers for Medicare & Medicaid Services, the Di8 rector of the National Institutes of Health, the Adminis9 trator of the Agency for Health Care Policy and Research, 

10 and the End-of-Life Care Advisory Board (established 

11 under section 7), shall develop outcome standards and 

12 measures to— 

13 (1) evaluate the performance of health care pro14 grams and projects that provide end-of-life care to 

15 individuals, including the quality of the care pro16 vided by such programs and projects; and 

17 (2) assess the access to, and utilization of, such 

18 programs and projects, including differences in such 

19 access and utilization in rural and urban areas and 

20 for minority populations. 


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1 (b) REPORT TO CONGRESS.—Not later than 2 years 

2 after the date of enactment of this Act, the Secretary of 

3 Health and Human Services shall submit to Congress a 

4 report on the outcome standards and measures developed 

5 under subsection (a), together with recommendations for 

6 such legislation and administrative actions as the Sec7 retary considers appropriate. 

8 SEC. 3. STUDY AND REPORT BY THE SECRETARY OF 

9 HEALTH AND HUMAN SERVICES REGARDING 

10 THE ESTABLISHMENT AND IMPLEMENTATION 

11 OF A NATIONAL UNIFORM POLICY ON AD12 VANCE DIRECTIVES. 

13 (a) STUDY.— 

14 (1) IN GENERAL.—The Secretary of Health and 

15 Human Services shall conduct a thorough study of 

16 all matters relating to the establishment and imple17 mentation of a national uniform policy on advance 

18 directives for individuals receiving items and services 

19 under titles XVIII and XIX of the Social Security 

20 Act (42 U.S.C. 1395 et seq.; 1396 et seq.). 

21 (2) MATTERS STUDIED.—The matters studied 

22 by the Secretary of Health and Human Services 

23 under paragraph (1) shall include issues con24 cerning— 


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1 (A) family satisfaction that a patient’s 

2 wishes, as stated in the patient’s advance direc3 tive, were carried out; 

4 (B) the portability of advance directives, 

5 including cases involving the transfer of an in6 dividual from 1 health care setting to another; 

7 (C) immunity from civil liability and crimi8 nal responsibility for health care providers that 

9 follow the instructions in an individual’s ad10 vance directive that was validly executed in, and 

11 consistent with the laws of, the State in which 

12 it was executed; 

13 (D) conditions under which an advance di14 rective is operative; 

15 (E) revocation of an advance directive by 

16 an individual; 

17 (F) the criteria used by States for deter18 mining that an individual has a terminal condi19 tion; 

20 (G) surrogate decisionmaking regarding 

21 end-of-life care; 

22 (H) the provision of adequate palliative 

23 care (as defined in paragraph (3)), including 

24 pain management; and 


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1 (I) adequate and timely referrals to hos2 pice care programs. 

3 (3) PALLIATIVE CARE.—For purposes of para4 graph (2)(H), the term ‘‘palliative care’’ means 

5 interdisciplinary care for individuals with a life6 threatening illness or injury relating to pain and 

7 symptom management and psychological, social, and 

8 spiritual needs and that seeks to improve the quality 

9 of life for the individual and the individual’s family. 

10 (b) REPORT TO CONGRESS.—Not later than 18 

11 months after the date of enactment of this Act, the Sec12 retary of Health and Human Services shall submit to Con13 gress a report on the study conducted under subsection 

14 (a), together with recommendations for such legislation 

15 and administrative actions as the Secretary considers ap16 propriate. 

17 (c) CONSULTATION.—In conducting the study and 

18 developing the report under this section, the Secretary of 

19 Health and Human Services shall consult with the End20 of-Life Care Advisory Board (established under section 7), 

21 the Uniform Law Commissioners, and other interested 

22 parties. 


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1 SEC. 4. IMPROVEMENT OF POLICIES RELATED TO THE USE 

2 OF ADVANCE DIRECTIVES. 

3 (a) MEDICARE.—Section 1866(f) of the Social Secu4 rity Act (42 U.S.C. 1395cc(f)) is amended— 

5 (1) in paragraph (1)— 

6 (A) in subparagraph (B), by inserting 

7 ‘‘and if presented by the individual, to include 

8 the content of such advance directive in a 

9 prominent part of such record’’ before the semi10 colon at the end; 

11 (B) in subparagraph (D), by striking 

12 ‘‘and’’ after the semicolon at the end; 

13 (C) in subparagraph (E), by striking the 

14 period at the end and inserting ‘‘; and’’; and 

15 (D) by inserting after subparagraph (E) 

16 the following new subparagraph: 

17 ‘‘(F) to provide each individual with the oppor18 tunity to discuss issues relating to the information 

19 provided to that individual pursuant to subpara20 graph (A) with an appropriately trained profes21 sional.’’; 

22 (2) in paragraph (3), by striking ‘‘a written’’ 

23 and inserting ‘‘an’’; and 

24 (3) by adding at the end the following new 

25 paragraph: 


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1 ‘‘(5)(A) An advance directive validly executed outside 

2 of the State in which such advance directive is presented 

3 by an adult individual to a provider of services, a Medicare 

4 Advantage organization, or a prepaid or eligible organiza5 tion shall be given the same effect by that provider or or6 ganization as an advance directive validly executed under 

7 the law of the State in which it is presented would be given 

8 effect. 

9 ‘‘(B)(i) The definition of an advanced directive shall 

10 also include actual knowledge of instructions made while 

11 an individual was able to express the wishes of such indi12 vidual with regard to health care. 

13 ‘‘(ii) For purposes of clause (i), the term ‘actual 

14 knowledge’ means the possession of information of an indi15 vidual’s wishes communicated to the health care provider 

16 orally or in writing by the individual, the individual’s med17 ical power of attorney representative, the individual’s 

18 health care surrogate, or other individuals resulting in the 

19 health care provider’s personal cognizance of these wishes. 

20 Other forms of imputed knowledge are not actual knowl21 edge. 

22 ‘‘(C) The provisions of this paragraph shall preempt 

23 any State law to the extent such law is inconsistent with 

24 such provisions. The provisions of this paragraph shall not 

25 preempt any State law that provides for greater portVerDate Aug 31 2005 03:18 Feb 03, 2007 Jkt 059200 PO 00000 Frm 00007 Fmt 6652 Sfmt 6201 E:\BILLS\S464.IS S464

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1 ability, more deference to a patient’s wishes, or more lati2 tude in determining a patient’s wishes.’’. 

3 (b) MEDICAID.—Section 1902(w) of the Social Secu4 rity Act (42 U.S.C. 1396a(w)) is amended— 

5 (1) in paragraph (1)— 

6 (A) in subparagraph (B)— 

7 (i) by striking ‘‘in the individual’s 

8 medical record’’ and inserting ‘‘in a promi9 nent part of the individual’s current med10 ical record’’; and 

11 (ii) by inserting ‘‘and if presented by 

12 the individual, to include the content of 

13 such advance directive in a prominent part 

14 of such record’’ before the semicolon at the 

15 end; 

16 (B) in subparagraph (D), by striking 

17 ‘‘and’’ after the semicolon at the end; 

18 (C) in subparagraph (E), by striking the 

19 period at the end and inserting ‘‘; and’’; and 

20 (D) by inserting after subparagraph (E) 

21 the following new subparagraph: 

22 ‘‘(F) to provide each individual with the oppor23 tunity to discuss issues relating to the information 

24 provided to that individual pursuant to subparaVerDate Aug 31 2005 03:18 Feb 03, 2007 Jkt 059200 PO 00000 Frm 00008 Fmt 6652 Sfmt 6201 E:\BILLS\S464.IS S464

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1 graph (A) with an appropriately trained profes2 sional.’’; 

3 (2) in paragraph (4), by striking ‘‘a written’’ 

4 and inserting ‘‘an’’; and 

5 (3) by adding at the end the following para6 graph: 

7 ‘‘(6)(A) An advance directive validly executed outside 

8 of the State in which such advance directive is presented 

9 by an adult individual to a provider or organization shall 

10 be given the same effect by that provider or organization 

11 as an advance directive validly executed under the law of 

12 the State in which it is presented would be given effect. 

13 ‘‘(B)(i) The definition of an advanced directive shall 

14 also include actual knowledge of instructions made while 

15 an individual was able to express the wishes of such indi16 vidual with regard to health care. 

17 ‘‘(ii) For purposes of clause (i), the term ‘actual 

18 knowledge’ means the possession of information of an indi19 vidual’s wishes communicated to the health care provider 

20 orally or in writing by the individual, the individual’s med21 ical power of attorney representative, the individual’s 

22 health care surrogate, or other individuals resulting in the 

23 health care provider’s personal cognizance of these wishes. 

24 Other forms of imputed knowledge are not actual knowl25 edge. 


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1 ‘‘(C) The provisions of this paragraph shall preempt 

2 any State law to the extent such law is inconsistent with 

3 such provisions. The provisions of this paragraph shall not 

4 preempt any State law that provides for greater port5 ability, more deference to a patient’s wishes, or more lati6 tude in determining a patient’s wishes.’’. 

7 (c) STUDY AND REPORT REGARDING IMPLEMENTA8 TION.— 

9 (1) STUDY.—The Secretary of Health and 

10 Human Services shall conduct a study regarding the 

11 implementation of the amendments made by sub12 sections (a) and (b). 

13 (2) REPORT.—Not later than 18 months after 

14 the date of enactment of this Act, the Secretary of 

15 Health and Human Services shall submit to Con16 gress a report on the study conducted under para17 graph (1), together with recommendations for such 

18 legislation and administrative actions as the Sec19 retary considers appropriate. 

20 (d) EFFECTIVE DATES.— 

21 (1) IN GENERAL.—Subject to paragraph (2), 

22 the amendments made by subsections (a) and (b) 

23 shall apply to provider agreements and contracts en24 tered into, renewed, or extended under title XVIII of 

25 the Social Security Act (42 U.S.C. 1395 et seq.), 


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1 and to State plans under title XIX of such Act (42 

2 U.S.C. 1396 et seq.), on or after such date as the 

3 Secretary of Health and Human Services specifies, 

4 but in no case may such date be later than 1 year 

5 after the date of enactment of this Act. 

6 (2) EXTENSION OF EFFECTIVE DATE FOR

7 STATE LAW AMENDMENT.—In the case of a State 

8 plan under title XIX of the Social Security Act (42 

9 U.S.C. 1396 et seq.) which the Secretary of Health 

10 and Human Services determines requires State legis11 lation in order for the plan to meet the additional 

12 requirements imposed by the amendments made by 

13 subsection (b), the State plan shall not be regarded 

14 as failing to comply with the requirements of such 

15 title solely on the basis of its failure to meet these 

16 additional requirements before the first day of the 

17 first calendar quarter beginning after the close of 

18 the first regular session of the State legislature that 

19 begins after the date of enactment of this Act. For 

20 purposes of the previous sentence, in the case of a 

21 State that has a 2-year legislative session, each year 

22 of the session is considered to be a separate regular 

23 session of the State legislature. 


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1 SEC. 5. NATIONAL INFORMATION HOTLINE FOR END-OF2 LIFE DECISIONMAKING AND HOSPICE CARE. 

3 The Secretary of Health and Human Services, acting 

4 through the Administrator of the Centers for Medicare & 

5 Medicaid Services, shall operate directly, or by grant, con6 tract, or interagency agreement, out of funds otherwise 

7 appropriated to the Secretary, a clearinghouse and a 24- 

8 hour toll-free telephone hotline in order to provide con9 sumer information about advance directives (as defined in 

10 section 1866(f)(3) of the Social Security Act (42 U.S.C. 

11 1395cc(f)(3)), as amended by section 4(a)), end-of-life de12 cisionmaking, and available end-of-life and hospice care 

13 services. In carrying out the preceding sentence, the Ad14 ministrator may designate an existing clearinghouse and 

15 24-hour toll-free telephone hotline or, if no such entity is 

16 appropriate, may establish a new clearinghouse and a 24- 

17 hour toll-free telephone hotline. 

18 SEC. 6. DEMONSTRATION PROJECT FOR INNOVATIVE AND 

19 NEW APPROACHES TO END-OF-LIFE CARE 

20 FOR MEDICARE, MEDICAID, AND SCHIP BENE21 FICIARIES. 

22 (a) ESTABLISHMENT.— 

23 (1) IN GENERAL.—The Secretary, acting 

24 through the Administrator of the Centers for Medi25 care & Medicaid Services, shall conduct a dem26 onstration project under which the Secretary conVerDate Aug 31 2005 03:18 Feb 03, 2007 Jkt 059200 PO 00000 Frm 00012 Fmt 6652 Sfmt 6201 E:\BILLS\S464.IS S464

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1 tracts with entities operating programs in order to 

2 develop new and innovative approaches to providing 

3 end-of-life care to Medicare beneficiaries, Medicaid 

4 beneficiaries, and SCHIP beneficiaries. 

5 (2) APPLICATION.—Any entity seeking to par6 ticipate in the demonstration project shall submit to 

7 the Secretary an application in such form and man8 ner as the Secretary may require. 

9 (3) DURATION.—The authority of the Secretary 

10 to conduct the demonstration project shall terminate 

11 at the end of the 5-year period beginning on the 

12 date the Secretary implements the demonstration 

13 project. 

14 (b) SELECTION CRITERIA.— 

15 (1) IN GENERAL.—Subject to paragraphs (2) 

16 and (3), in selecting entities to participate in the 

17 demonstration project, the Secretary shall select en18 tities that will allow for programs to be conducted 

19 in a variety of States, in an array of care settings, 

20 and that reflect— 

21 (A) a balance between urban and rural set22 tings; 

23 (B) cultural diversity; and 

24 (C) various modes of medical care and in25 surance, such as fee-for-service, preferred proVerDate Aug 31 2005 03:18 Feb 03, 2007 Jkt 059200 PO 00000 Frm 00013 Fmt 6652 Sfmt 6201 E:\BILLS\S464.IS S464

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1 vider organizations, health maintenance organi2 zations, hospice care, home care services, long3 term care, pediatric care, and integrated deliv4 ery systems. 

5 (2) PREFERENCES.—The Secretary shall give 

6 preference to entities operating programs that— 

7 (A) will serve Medicare beneficiaries, Med8 icaid beneficiaries, or SCHIP beneficiaries who 

9 are dying of illnesses that are most prevalent 

10 under the Medicare program, the Medicaid pro11 gram, or SCHIP, respectively; and 

12 (B) appear capable of sustained service 

13 and broad replication at a reasonable cost with14 in commonly available organizational structures. 

15 (3) SELECTION OF PROGRAM THAT PROVIDES

16 PEDIATRIC END-OF-LIFE CARE.—The Secretary shall 

17 ensure that at least 1 of the entities selected to par18 ticipate in the demonstration project operates a pro19 gram that provides pediatric end-of-life care. 

20 (c) EVALUATION OF PROGRAMS.— 

21 (1) IN GENERAL.—Each program operated by 

22 an entity under the demonstration project shall be 

23 evaluated at such regular intervals as the Secretary 

24 determines are appropriate. 


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1 (2) USE OF PRIVATE ENTITIES TO CONDUCT

2 EVALUATIONS.—The Secretary, in consultation with 

3 the End-of-Life Care Advisory Board (established 

4 under section 7), shall contract with 1 or more pri5 vate entities to coordinate and conduct the evalua6 tions under paragraph (1). Such a contract may not 

7 be awarded to an entity selected to participate in the 

8 demonstration project. 

9 (3) REQUIREMENTS FOR EVALUATIONS.— 

10 (A) USE OF OUTCOME MEASURES AND

11 STANDARDS.—In coordinating and conducting 

12 an evaluation of a program conducted under the 

13 demonstration project, an entity shall use the 

14 outcome standards and measures required to be 

15 developed under section 2 as soon as those 

16 standards and measures are available. 

17 (B) ELEMENTS OF EVALUATION.—In addi18 tion to the use of the outcome standards and 

19 measures under subparagraph (A), an evalua20 tion of a program conducted under the dem21 onstration project shall include the following: 

22 (i) A comparison of the quality of care 

23 provided by, and of the outcomes for Medi24 care beneficiaries, Medicaid beneficiaries, 

25 and SCHIP beneficiaries, and the families 


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1 of such beneficiaries enrolled in, the pro2 gram being evaluated to the quality of care 

3 and outcomes for such individuals that 

4 would have resulted if care had been pro5 vided under existing delivery systems. 

6 (ii) An analysis of how ongoing meas7 ures of quality and accountability for im8 provement and excellence could be incor9 porated into the program being evaluated. 

10 (iii) A comparison of the costs of the 

11 care provided to Medicare beneficiaries, 

12 Medicaid beneficiaries, and SCHIP bene13 ficiaries under the program being evalu14 ated to the costs of such care that would 

15 have been incurred under the Medicare 

16 program, the Medicaid program, and 

17 SCHIP if such program had not been con18 ducted. 

19 (iv) An analysis of whether the pro20 gram being evaluated implements practices 

21 or procedures that result in improved pa22 tient outcomes, resource utilization, or 

23 both. 

24 (v) An analysis of— 


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1 (I) the population served by the 

2 program being evaluated; and 

3 (II) how accurately that popu4 lation reflects the total number of 

5 Medicare beneficiaries, Medicaid bene6 ficiaries, and SCHIP beneficiaries re7 siding in the area who are in need of 

8 services offered by such program. 

9 (vi) An analysis of the eligibility re10 quirements and enrollment procedures for 

11 the program being evaluated. 

12 (vii) An analysis of the services pro13 vided to beneficiaries enrolled in the pro14 gram being evaluated and the utilization 

15 rates for such services. 

16 (viii) An analysis of the structure for 

17 the provision of specific services under the 

18 program being evaluated. 

19 (ix) An analysis of the costs of pro20 viding specific services under the program 

21 being evaluated. 

22 (x) An analysis of any procedures for 

23 offering Medicare beneficiaries, Medicaid 

24 beneficiaries, and SCHIP beneficiaries en25 rolled in the program being evaluated a 


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1 choice of services and how the program re2 sponds to the preferences of such bene3 ficiaries. 

4 (xi) An analysis of the quality of care 

5 provided to, and of the outcomes for, Medi6 care beneficiaries, Medicaid beneficiaries, 

7 and SCHIP beneficiaries, and the families 

8 of such beneficiaries, that are enrolled in 

9 the program being evaluated. 

10 (xii) An analysis of any ethical, cul11 tural, or legal concerns— 

12 (I) regarding the program being 

13 evaluated; and 

14 (II) with the replication of such 

15 program in other settings. 

16 (xiii) An analysis of any changes to 

17 regulations or of any additional funding 

18 that would result in more efficient proce19 dures or improved outcomes under the pro20 gram being evaluated. 

21 (d) WAIVER AUTHORITY.—The Secretary may waive 

22 compliance with any of the requirements of titles XI, 

23 XVIII, XIX, and XXI of the Social Security Act (42 

24 U.S.C. 1301 et seq.; 1395 et seq.; 1396 et seq.; 1397aa 

25 et seq.) which, if applied, would prevent the demonstration 


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1 project carried out under this section from effectively 

2 achieving the purpose of such project. 

3 (e) REPORTS TO CONGRESS.— 

4 (1) ANNUAL REPORTS BY SECRETARY.— 

5 (A) IN GENERAL.—Beginning 1 year after 

6 the date of enactment of this Act, and annually 

7 thereafter, the Secretary shall submit to Con8 gress a report on the demonstration project and 

9 on the quality of end-of-life care under the 

10 Medicare program, the Medicaid program, and 

11 SCHIP, together with recommendations for 

12 such legislation and administrative actions as 

13 the Secretary considers appropriate. 

14 (B) SUMMARY OF RECENT STUDIES.—A 

15 report submitted under subparagraph (A) shall 

16 include a summary of any recent studies and 

17 advice from experts in the health care field re18 garding the ethical, cultural, and legal issues 

19 that may arise when attempting to improve the 

20 health care system to meet the needs of individ21 uals with serious and eventually terminal condi22 tions. 

23 (C) CONTINUATION OR REPLICATION OF

24 DEMONSTRATION PROJECTS.—The first report 

25 submitted under subparagraph (A) after the 3- 


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1 year anniversary of the date the Secretary im2 plements the demonstration project shall in3 clude recommendations regarding whether such 

4 demonstration project should be continued be5 yond the period described in subsection (a)(3) 

6 and whether broad replication of any of the pro7 grams conducted under the demonstration 

8 project should be initiated. 

9 (2) REPORT BY END-OF-LIFE CARE ADVISORY

10 BOARD ON DEMONSTRATION PROJECT.— 

11 (A) IN GENERAL.—Not later than 2 years 

12 after the conclusion of the demonstration 

13 project, the End-of-Life Advisory Board shall 

14 submit a report to the Secretary and Congress 

15 on such project. 

16 (B) CONTENTS.—The report submitted 

17 under subparagraph (A) shall contain— 

18 (i) an evaluation of the effectiveness 

19 of the demonstration project; and 

20 (ii) recommendations for such legisla21 tion and administrative actions as the 

22 Board considers appropriate. 

23 (f) FUNDING.—There are appropriated such sums as 

24 are necessary for conducting the demonstration project 


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1 and for preparing and submitting the reports required 

2 under subsection (e)(1). 

3 (g) DEFINITIONS.—In this section: 

4 (1) DEMONSTRATION PROJECT.—The term 

5 ‘‘demonstration project’’ means the demonstration 

6 project conducted under this section. 

7 (2) MEDICAID BENEFICIARIES.—The term 

8 ‘‘Medicaid beneficiaries’’ means individuals who are 

9 enrolled in the State Medicaid program. 

10 (3) MEDICAID PROGRAM.—The term ‘‘Medicaid 

11 program’’ means the health care program under title 

12 XIX of the Social Security Act (42 U.S.C. 1395 et 

13 seq.). 

14 (4) MEDICARE BENEFICIARIES.—The term 

15 ‘‘Medicare beneficiaries’’ means individuals who are 

16 entitled to, or enrolled for, benefits under part A or 

17 enrolled for benefits under part B of the Medicare 

18 program. 

19 (5) MEDICARE PROGRAM.—The term ‘‘Medicare 

20 program’’ means the health care program under title 

21 XVIII of the Social Security Act (42 U.S.C. 1395 et 

22 seq.). 

23 (6) SCHIP.—The term ‘‘SCHIP’’ means the 

24 State children’s health insurance program under 


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1 title XXI of the Social Security Act (42 U.S.C. 

2 1397aa et seq.). 

3 (7) SCHIP BENEFICIARY.—The term ‘‘SCHIP 

4 beneficiary’’ means an individual who is enrolled in 

5 SCHIP. 

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

7 the Secretary of Health and Human Services. 

8 SEC. 7. ESTABLISHMENT OF END-OF-LIFE CARE ADVISORY 

9 BOARD. 

10 (a) ESTABLISHMENT.—There is established within 

11 the Department of Health and Human Services an End12 of-Life Care Advisory Board (in this section referred to 

13 as the ‘‘Board’’). 

14 (b) STRUCTURE AND MEMBERSHIP.— 

15 (1) IN GENERAL.—The Board shall be com16 posed of 15 members who shall be appointed by the 

17 Secretary of Health and Human Services (in this 

18 section referred to as the ‘‘Secretary’’). 

19 (2) REQUIRED REPRESENTATION.—The Sec20 retary shall ensure that the following groups, organi21 zations, and associations are represented in the 

22 membership of the Board: 

23 (A) An end-of-life consumer advocacy orga24 nization. 

25 (B) A senior citizen advocacy organization. 


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1 (C) A physician-based hospice or palliative 

2 care organization. 

3 (D) A nurse-based hospice or palliative 

4 care organization. 

5 (E) A hospice or palliative care provider 

6 organization. 

7 (F) A hospice or palliative care representa8 tive that serves the veterans population. 

9 (G) A physician-based medical association. 

10 (H) A physician-based pediatric medical 

11 association. 

12 (I) A home health-based nurses associa13 tion. 

14 (J) A hospital-based or health system15 based palliative care group. 

16 (K) A children-based or family-based hos17 pice resource group. 

18 (L) A cancer pain management resource 

19 group. 

20 (M) A cancer research and policy advocacy 

21 group. 

22 (N) An end-of-life care policy advocacy 

23 group. 

24 (O) An interdisciplinary end-of-life care 

25 academic institution. 


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1 (3) ETHNIC DIVERSITY REQUIREMENT.—The 

2 Secretary shall ensure that the members of the 

3 Board appointed under paragraph (1) represent the 

4 ethnic diversity of the United States. 

5 (4) PROHIBITION.—No individual who is a Fed6 eral officer or employee may serve as a member of 

7 the Board. 

8 (5) TERMS OF APPOINTMENT.—Each member 

9 of the Board shall serve for a term determined ap10 propriate by the Secretary. 

11 (6) CHAIRPERSON.—The Secretary shall des12 ignate a member of the Board as chairperson. 

13 (c) MEETINGS.—The Board shall meet at the call of 

14 the chairperson but not less often than every 3 months. 

15 (d) DUTIES.— 

16 (1) IN GENERAL.—The Board shall advise the 

17 Secretary on all matters related to the furnishing of 

18 end-of-life care to individuals. 

19 (2) SPECIFIC DUTIES.—The specific duties of 

20 the Board are as follows: 

21 (A) CONSULTING.—The Board shall con22 sult with the Secretary regarding— 

23 (i) the development of the outcome 

24 standards and measures under section 2; 


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1 (ii) conducting the study and submit2 ting the report under section 3; and 

3 (iii) the selection of private entities to 

4 conduct evaluations pursuant to section 

5 6(c)(2). 

6 (B) REPORT ON DEMONSTRATION

7 PROJECT.—The Board shall submit the report 

8 required under section 6(e)(2). 

9 (e) MEMBERS TO SERVE WITHOUT COMPENSA10 TION.— 

11 (1) IN GENERAL.—All members of the Board 

12 shall serve on the Board without compensation for 

13 such service. 

14 (2) TRAVEL EXPENSES.—The members of the 

15 Board shall be allowed travel expenses, including per 

16 diem in lieu of subsistence, at rates authorized for 

17 employees of agencies under subchapter I of chapter 

18 57 of title 5, United States Code, while away from 

19 their homes or regular places of business in the per20 formance of services for the Board. 

21 (f) STAFF.— 

22 (1) IN GENERAL.—The chairperson of the 

23 Board may, without regard to the civil service laws 

24 and regulations, appoint and terminate an executive 

25 director and such other additional personnel as may 


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1 be necessary to enable the Board to perform its du2 ties. The employment of an executive director shall 

3 be subject to confirmation by the Board. 

4 (2) COMPENSATION.—The chairperson of the 

5 Board may fix the compensation of the executive di6 rector and other personnel without regard to chapter 

7 51 and subchapter III of chapter 53 of title 5, 

8 United States Code, relating to classification of posi9 tions and General Schedule pay rates, except that 

10 the rate of pay for the executive director and other 

11 personnel may not exceed the rate payable for level 

12 V of the Executive Schedule under section 5316 of 

13 such title. 

14 (3) PERSONNEL AS FEDERAL EMPLOYEES.— 

15 (A) IN GENERAL.—The executive director 

16 and any personnel of the Board who are em17 ployees shall be employees under section 2105 

18 of title 5, United States Code, for purposes of 

19 chapters 63, 81, 83, 84, 85, 87, 89, and 90 of 

20 that title. 

21 (B) MEMBERS OF BOARD.—Subparagraph 

22 (A) shall not be construed to apply to members 

23 of the Board. 

24 (g) DETAIL OF GOVERNMENT EMPLOYEES.—Any 

25 Federal Government employee may be detailed to the 


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1 Board without additional reimbursement (other than the 

2 employee’s regular compensation), and such detail shall be 

3 without interruption or loss of civil service status or privi4 lege. 

5 (h) PROCUREMENT OF TEMPORARY AND INTERMIT6 TENT SERVICES.—The chairperson of the Board may pro7 cure temporary and intermittent services under section 

8 3109(b) of title 5, United States Code, at rates for individ9 uals which do not exceed the daily equivalent of the annual 

10 rate of basic pay prescribed for level V of the Executive 

11 Schedule under section 5316 of such title. 

12 (i) FEDERAL ADVISORY COMMITTEE ACT.—Section 

13 14 of the Federal Advisory Committee Act (5 U.S.C. 

14 App.) shall not apply to the Board. 

15 (j) TERMINATION.—The Board shall terminate 90 

16 days after the date on which the Board submits the report 

17 under section 6(e)(2). 

18 (k) FUNDING.—Funding for the operation of the 

19 Board shall be from amounts otherwise appropriated to 

20 the Department of Health and Human Services. 

Æ 


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