I 

109TH CONGRESS 

1ST SESSION H. R. 2058

To amend titles XVIII and XIX of the Social Security Act and title III 

of the Public Health Service Act to improve access to information about 

individuals’ health care options and legal rights for care near the end 

of life, to promote advance care planning and decisionmaking so that 

individuals’ wishes are known should they become unable to speak for 

themselves, to engage health care providers in disseminating information 

about and assisting in the preparation of advance directives, which include living wills and durable powers of attorney for health care, and 

for other purposes. 

IN THE HOUSE OF REPRESENTATIVES 

MAY 3, 2005

Mr. LEVIN (for himself, Mr. ABERCROMBIE, Mr. CARDIN, Mr. CASE, Mr. CASTLE, Mr. CLEAVER, Mr. CUMMINGS, Ms. DELAURO, Mr. ENGEL, Mr. 

FARR, Mr. HOLDEN, Mr. KILDEE, Mr. KIND, Mr. KUCINICH, Mr. LEWIS

of Georgia, Mrs. MALONEY, Mrs. MCCARTHY, Mr. MCDERMOTT, Mr. 

MCNULTY, Mr. MEEK of Florida, Mr. GEORGE MILLER of California, Mr. 

MOORE of Kansas, Mr. ROSS, Ms. SLAUGHTER, Mr. SNYDER, Mr. UDALL

of Colorado, Ms. WASSERMAN SCHULTZ, Mr. WAXMAN, Mr. DAVIS of Illinois, and Mr. OWENS) 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 amend titles XVIII and XIX of the Social Security Act 

and title III of the Public Health Service Act to improve 

access to information about individuals’ health care options and legal rights for care near the end of life, 

to promote advance care planning and decisionmaking 
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so that individuals’ wishes are known should they become 

unable to speak for themselves, to engage health care 

providers in disseminating information about and assisting in the preparation of advance directives, which include living wills and durable powers of attorney for 

health care, 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 Directives Improvement and Education Act of 

6 2005’’. 

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

8 this Act is as follows:

Sec. 1. Short title; table of contents. 

Sec. 2. Findings and purposes. 

Sec. 3. Medicare coverage of end-of-life planning consultations. 

Sec. 4. Improvement of policies related to the use and portability of advance 

directives. 

Sec. 5. Increasing awareness of the importance of end-of-life planning. 

Sec. 6. GAO studies and reports on end-of-life planning issues.

9 SEC. 2. FINDINGS AND PURPOSES. 

10 (a) FINDINGS.—Congress makes the following find11 ings: 

12 (1) Every year 2,500,000 people die in the 

13 United States. Eighty percent of those people die in 

14 institutions such as hospitals, nursing homes, and 

15 other facilities. Chronic illnesses, such as cancer and 

16 heart disease, account for 2 out of every 3 deaths. 
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1 (2) In January 2004, a study published in the 

2 Journal of the American Medical Association con3 cluded that many people dying in institutions have 

4 unmet medical, psychological, and spiritual needs. 

5 Moreover, family members of decedents who received 

6 care at home with hospice services were more likely 

7 to report a favorable dying experience. 

8 (3) In 1997, the Supreme Court of the United 

9 States, in its decisions in Washington v. Glucksberg 

10 and Vacco v. Quill, reaffirmed the constitutional 

11 right of competent adults to refuse unwanted med12 ical treatment. In those cases, the Court stressed the 

13 use of advance directives as a means of safeguarding 

14 that right should those adults become incapable of 

15 deciding for themselves. 

16 (4) A study published in 2002 estimated that 

17 the overall prevalence of advance directives is be18 tween 15 and 20 percent of the general population, 

19 despite the passage of the Patient Self-Determina20 tion Act in 1990, which requires that health care 

21 providers tell patients about advance directives. 

22 (5) Competent adults should complete advance 

23 care plans stipulating their health care decisions in 

24 the event that they become unable to speak for 

25 themselves. Through the execution of advance direc-
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1 tives, including living wills and durable powers of at2 torney for health care according to the laws of the 

3 State in which they reside, individuals can protect 

4 their right to express their wishes and have them re5 spected. 

6 (b) PURPOSES.—The purposes of this Act are to im7 prove access to information about individuals’ health care 

8 options and legal rights for care near the end of life, to 

9 promote advance care planning and decisionmaking so 

10 that individuals’ wishes are known should they become un11 able to speak for themselves, to engage health care pro12 viders in disseminating information about and assisting in 

13 the preparation of advance directives, which include living 

14 wills and durable powers of attorney for health care, and 

15 for other purposes. 

16 SEC. 3. MEDICARE COVERAGE OF END-OF-LIFE PLANNING 

17 CONSULTATIONS. 

18 (a) COVERAGE.—Section 1861(s)(2) of the Social Se19 curity Act (42 U.S.C. 1395x(s)(2)), as amended by section 

20 642(a) of the Medicare Prescription Drug, Improvement, 

21 and Modernization Act of 2003 (Public Law 108–173; 117 

22 Stat. 2322), is amended—

23 (1) in subparagraph (Y), by striking ‘‘and’’ at 

24 the end; 
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1 (2) in subparagraph (Z), by inserting ‘‘and’’ at 

2 the end; and 

3 (3) by adding at the end the following new sub4 paragraph: 

5 ‘‘(AA) end-of-life planning consultations (as de6 fined in subsection (bbb));’’. 

7 (b) SERVICES DESCRIBED.—Section 1861 of the So8 cial Security Act (42 U.S.C. 1395x), as amended by sec9 tion 706(b) of the Medicare Prescription Drug, Improve10 ment, and Modernization Act of 2003 (Public Law 108–

11 173; 117 Stat. 2339), is amended by adding at the end 

12 the following new subsection: 

13 ‘‘End-of-Life Planning Consultation 

14 ‘‘(bbb) The term ‘end-of-life planning consultation’ 

15 means physicians’ services—

16 ‘‘(1) consisting of a consultation between the 

17 physician and an individual regarding—

18 ‘‘(A) the importance of preparing advance 

19 directives in case an injury or illness causes the 

20 individual to be unable to make health care de21 cisions; 

22 ‘‘(B) the situations in which an advance di23 rective is likely to be relied upon; 

24 ‘‘(C) the reasons that the development of a 

25 comprehensive end-of-life plan is beneficial and 
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1 the reasons that such a plan should be updated 

2 periodically as the health of the individual 

3 changes; 

4 ‘‘(D) the identification of resources that an 

5 individual may use to determine the require6 ments of the State in which such individual re7 sides so that the treatment wishes of that indi8 vidual will be carried out if the individual is un9 able to communicate those wishes, including re10 quirements regarding the designation of a sur11 rogate decision maker (health care proxy); and 

12 ‘‘(E) whether or not the physician is will13 ing to follow the individual’s wishes as ex14 pressed in an advance directive; and 

15 ‘‘(2) that are furnished to an individual on an 

16 annual basis or immediately following any major 

17 change in an individual’s health condition that would 

18 warrant such a consultation (whichever comes 

19 first).’’. 

20 (c) WAIVER OF DEDUCTIBLE AND COINSURANCE.—

21 (1) DEDUCTIBLE.—The first sentence of sec22 tion 1833(b) of the Social Security Act (42 U.S.C. 

23 1395l(b)) is amended—

24 (A) by striking ‘‘and’’ before ‘‘(6)’’; and 
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1 (B) by inserting before the period at the 

2 end the following: ‘‘, and (7) such deductible 

3 shall not apply with respect to an end-of-life 

4 planning consultation (as defined in section 

5 1861(bbb))’’. 

6 (2) COINSURANCE.—Section 1833(a)(1) of the 

7 Social Security Act (42 U.S.C. 1395l(a)(1)) is 

8 amended—

9 (A) in clause (N), by inserting ‘‘(or 100 

10 percent in the case of an end-of-life planning 

11 consultation, as defined in section 1861(bbb))’’ 

12 after ‘‘80 percent’’; and 

13 (B) in clause (O), by inserting ‘‘(or 100 

14 percent in the case of an end-of-life planning 

15 consultation, as defined in section 1861(bbb))’’ 

16 after ‘‘80 percent’’. 

17 (d) PAYMENT FOR PHYSICIANS’ SERVICES.—Section 

18 1848(j)(3) of the Social Security Act (42 U.S.C. 1395w–

19 4(j)(3)), as amended by section 611(c) of the Medicare 

20 Prescription Drug, Improvement, and Modernization Act 

21 of 2003 (Public Law 108–173; 117 Stat. 2304), is amend22 ed by inserting ‘‘(2)(AA),’’ after ‘‘(2)(W),’’. 

23 (e) FREQUENCY LIMITATION.—Section 1862(a)(1) of 

24 the Social Security Act (42 U.S.C. 1395y(a)(1)), as 

25 amended by section 613(c) of the Medicare Prescription 
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1 Drug, Improvement, and Modernization Act of 2003 (Pub2 lic Law 108–173; 117 Stat. 2306), is amended—

3 (1) by striking ‘‘and’’ at the end of subpara4 graph (L); 

5 (2) by striking the semicolon at the end of sub6 paragraph (M) and inserting ‘‘, and’’; and 

7 (3) by adding at the end the following new sub8 paragraph: 

9 ‘‘(N) in the case of end-of-life planning con10 sultations (as defined in section 1861(bbb)), which 

11 are performed more frequently than is covered under 

12 paragraph (2) of such section;’’. 

13 (f) EFFECTIVE DATE.—The amendments made by 

14 this section shall apply to services furnished on or after 

15 January 1, 2006. 

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

17 AND PORTABILITY OF ADVANCE DIRECTIVES. 

18 (a) MEDICARE.—Section 1866(f) of the Social Secu19 rity Act (42 U.S.C. 1395cc(f)) is amended—

20 (1) in paragraph (1)—

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

22 ‘‘and if presented by the individual (or on be23 half of the individual), to include the content of 

24 such advance directive in a prominent part of 

25 such record’’ before the semicolon at the end; 
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1 (B) in subparagraph (D), by striking 

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

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

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

5 (D) by inserting after subparagraph (E) 

6 the following new subparagraph: 

7 ‘‘(F) to provide each individual with the oppor8 tunity to discuss issues relating to the information 

9 provided to that individual pursuant to subpara10 graph (A) with an appropriately trained profes11 sional.’’; 

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

13 and inserting ‘‘an’’; and 

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

15 paragraph: 

16 ‘‘(5)(A) In addition to the requirements of paragraph 

17 (1), a provider of services, Medicare Advantage organiza18 tion, or prepaid or eligible organization (as the case may 

19 be) shall give effect to an advance directive executed out20 side the State in which such directive is presented, even 

21 one that does not appear to meet the formalities of execu22 tion, form, or language required by the State in which it 

23 is presented to the same extent as such provider or organi24 zation would give effect to an advance directive that meets 

25 such requirements, except that a provider or organization 
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1 may decline to honor such a directive if the provider or 

2 organization can reasonably demonstrate that it is not an 

3 authentic expression of the individual’s wishes concerning 

4 his or her health care. Nothing in this paragraph shall 

5 be construed to authorize the administration of medical 

6 treatment otherwise prohibited by the laws of the State 

7 in which the directive is presented. 

8 ‘‘(B) The provisions of this paragraph shall preempt 

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

10 such provisions. The provisions of this paragraph shall not 

11 preempt any State law that provides for greater port12 ability, more deference to a patient’s wishes, or more lati13 tude in determining a patient’s wishes.’’. 

14 (b) MEDICAID.—Section 1902(w) of the Social Secu15 rity Act (42 U.S.C. 1396a(w)) is amended—

16 (1) in paragraph (1)—

17 (A) in subparagraph (B)—

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

19 medical record’’ and inserting ‘‘in a promi20 nent part of the individual’s current med21 ical record’’; and 

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

23 the individual (or on behalf of the indi24 vidual), to include the content of such ad-
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1 vance directive in a prominent part of such 

2 record’’ before the semicolon at the end; 

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

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

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

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

7 (D) by inserting after subparagraph (E) 

8 the following new subparagraph: 

9 ‘‘(F) to provide each individual with the oppor10 tunity to discuss issues relating to the information 

11 provided to that individual pursuant to subpara12 graph (A) with an appropriately trained profes13 sional.’’; 

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

15 and inserting ‘‘an’’; and 

16 (3) by adding at the end the following para17 graph: 

18 ‘‘(6)(A) In addition to the requirements of paragraph 

19 (1), a provider or organization (as the case may be) shall 

20 give effect to an advance directive executed outside the 

21 State in which such directive is presented, even one that 

22 does not appear to meet the formalities of execution, form, 

23 or language required by the State in which it is presented 

24 to the same extent as such provider or organization would 

25 give effect to an advance directive that meets such require-
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1 ments, except that a provider or organization may decline 

2 to honor such a directive if the provider or organization 

3 can reasonably demonstrate that it is not an authentic ex4 pression of the individual’s wishes concerning his or her 

5 health care. Nothing in this paragraph shall be construed 

6 to authorize the administration of medical treatment oth7 erwise prohibited by the laws of the State in which the 

8 directive is presented. 

9 ‘‘(B) The provisions of this paragraph shall preempt 

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

11 such provisions. The provisions of this paragraph shall not 

12 preempt any State law that provides for greater port13 ability, more deference to a patient’s wishes, or more lati14 tude in determining a patient’s wishes.’’. 

15 (c) EFFECTIVE DATES.—

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

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

18 shall apply to provider agreements and contracts en19 tered into, renewed, or extended under title XVIII of 

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

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

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

23 Secretary of Health and Human Services specifies, 

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

25 after the date of enactment of this Act. 
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1 (2) EXTENSION OF EFFECTIVE DATE FOR

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

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

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

5 and Human Services determines requires State legis6 lation in order for the plan to meet the additional 

7 requirements imposed by the amendments made by 

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

9 as failing to comply with the requirements of such 

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

11 additional requirements before the first day of the 

12 first calendar quarter beginning after the close of 

13 the first regular session of the State legislature that 

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

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

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

17 of the session is considered to be a separate regular 

18 session of the State legislature. 

19 SEC. 5. INCREASING AWARENESS OF THE IMPORTANCE OF 

20 END-OF-LIFE PLANNING. 

21 Title III of the Public Health Service Act (42 U.S.C. 

22 241 et seq.) is amended by adding at the end the following 

23 new part: 
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1 ‘‘PART R—PROGRAMS TO INCREASE AWARENESS 

2 OF ADVANCE DIRECTIVE PLANNING ISSUES 

3 ‘‘SEC. 399Z–1. ADVANCE DIRECTIVE EDUCATION CAM4 PAIGNS AND INFORMATION CLEARING5 HOUSES. 

6 ‘‘(a) ADVANCE DIRECTIVE EDUCATION CAMPAIGN.—

7 The Secretary shall, directly or through grants awarded 

8 under subsection (c), conduct a national public education 

9 campaign—

10 ‘‘(1) to raise public awareness of the impor11 tance of planning for care near the end of life; 

12 ‘‘(2) to improve the public’s understanding of 

13 the various situations in which individuals may find 

14 themselves if they become unable to express their 

15 health care wishes; 

16 ‘‘(3) to explain the need for readily available 

17 legal documents that express an individual’s wishes, 

18 through advance directives (including living wills, 

19 comfort care orders, and durable powers of attorney 

20 for health care); and 

21 ‘‘(4) to educate the public about the availability 

22 of hospice care and palliative care. 

23 ‘‘(b) INFORMATION CLEARINGHOUSE.—The Sec24 retary, directly or through grants awarded under sub25 section (c), shall provide for the establishment of a na26 tional, toll-free, information clearinghouse as well as clear-
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1 inghouses that the public may access to find out about 

2 State-specific information regarding advance directive and 

3 end-of-life decisions. 

4 ‘‘(c) GRANTS.—

5 ‘‘(1) IN GENERAL.—The Secretary shall use at 

6 least 60 percent of the funds appropriated under 

7 subsection (d) for the purpose of awarding grants to 

8 public or nonprofit private entities (including States 

9 or political subdivisions of a State), or a consortium 

10 of any of such entities, for the purpose of conducting 

11 education campaigns under subsection (a) and estab12 lishing information clearinghouses under subsection 

13 (b). 

14 ‘‘(2) PERIOD.—Any grant awarded under para15 graph (1) shall be for a period of 3 years. 

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

17 are authorized to be appropriated to carry out this section 

18 $25,000,000.’’. 

19 SEC. 6. GAO STUDIES AND REPORTS ON END-OF-LIFE PLAN20 NING ISSUES. 

21 (a) STUDY AND REPORT ON COMPLIANCE WITH AD22 VANCE DIRECTIVES AND OTHER ADVANCE PLANNING

23 DOCUMENTS.—

24 (1) STUDY.—The Comptroller General of the 

25 United States shall conduct a study on the effective-
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1 ness of advance directives in making patients’ wishes 

2 known and honored by health care providers. 

3 (2) REPORT.—Not later than the date that is 

4 18 months after the date of enactment of this Act, 

5 the Comptroller General of the United States shall 

6 submit to Congress a report on the study conducted 

7 under paragraph (1) together with recommendations 

8 for such legislation and administrative action as the 

9 Comptroller General of the United States determines 

10 to be appropriate. 

11 (b) STUDY AND REPORT ON IMPLEMENTATION OF

12 THE MEDICARE COVERAGE FOR END-OF-LIFE PLANNING

13 CONSULTATIONS.—

14 (1) STUDY.—The Comptroller General of the 

15 United States shall conduct a study on the imple16 mentation of the amendments made by section 3 (re17 lating to medicare coverage of end-of-life planning 

18 consultations). 

19 (2) REPORT.—Not later than 2 years after the 

20 date of enactment of this Act, the Comptroller Gen21 eral of the United States shall submit to Congress 

22 a report on the study conducted under paragraph 

23 (1) together with recommendations for such legisla24 tion and administrative action as the Comptroller 
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1 General of the United States determines to be ap2 propriate. 

3 (c) STUDY AND REPORT ON ESTABLISHMENT OF NA4 TIONAL ADVANCE DIRECTIVE REGISTRY.—

5 (1) STUDY.—The Comptroller General of the 

6 United States shall conduct a study on the feasi7 bility of a national registry for advance directives, 

8 taking into consideration the constraints created by 

9 the privacy provisions enacted as a result of the 

10 Health Insurance Portability and Accountability Act. 

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

12 the date of enactment of this Act, the Comptroller 

13 General of the United States shall submit to Con14 gress a report on the study conducted under para15 graph (1) together with recommendations for such 

16 legislation and administrative action as the Comp17 troller General of the United States determines to be 

18 appropriate.

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