II 

108TH CONGRESS 

2D SESSION S. 2545 

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 SENATE OF THE UNITED STATES 

JUNE 17, 2004 

Mr. NELSON of Florida (for himself and Mr. ROCKEFELLER) 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 

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. 
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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 2004’’. 

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. 

17 (2) In January 2004, a study published in the 

18 Journal of the American Medical Association con19 cluded that many people dying in institutions have 

20 unmet medical, psychological, and spiritual needs. 

21 Moreover, family members of decedents who received 
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1 care at home with hospice services were more likely 

2 to report a favorable dying experience. 

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

4 States, in its decisions in Washington v. Glucksberg 

5 and Vacco v. Quill, reaffirmed the constitutional 

6 right of competent adults to refuse unwanted med7 ical treatment. In those cases, the Court stressed the 

8 use of advance directives as a means of safeguarding 

9 that right should those adults become incapable of 

10 deciding for themselves. 

11 (4) A study published in 2002 estimated that 

12 the overall prevalence of advance directives is be13 tween 15 and 20 percent of the general population, 

14 despite the passage of the Patient Self-Determina15 tion Act in 1990, which requires that health care 

16 providers tell patients about advance directives. 

17 (5) Competent adults should complete advance 

18 care plans stipulating their health care decisions in 

19 the event that they become unable to speak for 

20 themselves. Through the execution of advance direc21 tives, including living wills and durable powers of at22 torney for health care according to the laws of the 

23 State in which they reside, individuals can protect 

24 their right to express their wishes and have them re25 spected. 
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1 (b) PURPOSES.—The purposes of this Act are to im2 prove access to information about individuals’ health care 

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

4 promote advance care planning and decisionmaking so 

5 that individuals’ wishes are known should they become un6 able to speak for themselves, to engage health care pro7 viders in disseminating information about and assisting in 

8 the preparation of advance directives, which include living 

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

10 for other purposes. 

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

12 CONSULTATIONS. 

13 (a) COVERAGE.—Section 1861(s)(2) of the Social Se14 curity Act (42 U.S.C. 1395x(s)(2)), as amended by section 

15 642(a) of the Medicare Prescription Drug, Improvement, 

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

17 Stat. 2322), is amended— 

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

19 the end; 

20 (2) in subparagraph (Z), by inserting ‘‘and’’ at 

21 the end; and 

22 (3) by adding at the end the following new sub23 paragraph: 

24 ‘‘(AA) end-of-life planning consultations (as de25 fined in subsection (bbb));’’. 
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1 (b) SERVICES DESCRIBED.—Section 1861 of the So2 cial Security Act (42 U.S.C. 1395x), as amended by sec3 tion 706(b) of the Medicare Prescription Drug, Improve4 ment, and Modernization Act of 2003 (Public Law 108– 

5 173; 117 Stat. 2339), is amended by adding at the end 

6 the following new subsection: 

7 ‘‘End-of-Life Planning Consultation 

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

9 means physicians’ services— 

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

11 physician and an individual regarding— 

12 ‘‘(A) the importance of preparing advance 

13 directives in case an injury or illness causes the 

14 individual to be unable to make health care de15 cisions; 

16 ‘‘(B) the situations in which an advance di17 rective is likely to be relied upon; 

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

19 comprehensive end-of-life plan is beneficial and 

20 the reasons that such a plan should be updated 

21 periodically as the health of the individual 

22 changes; 

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

24 individual may use to determine the require25 ments of the State in which such individual re-
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1 sides so that the treatment wishes of that indi2 vidual will be carried out if the individual is un3 able to communicate those wishes, including re4 quirements regarding the designation of a sur5 rogate decision maker (health care proxy); and 

6 ‘‘(E) whether or not the physician is will7 ing to follow the individual’s wishes as ex8 pressed in an advance directive; and 

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

10 annual basis or immediately following any major 

11 change in an individual’s health condition that would 

12 warrant such a consultation (whichever comes 

13 first).’’. 

14 (c) WAIVER OF DEDUCTIBLE AND COINSURANCE.— 

15 (1) DEDUCTIBLE.—The first sentence of sec16 tion 1833(b) of the Social Security Act (42 U.S.C. 

17 1395l(b)) is amended— 

18 (A) by striking ‘‘and’’ before ‘‘(6)’’; and 

19 (B) by inserting before the period at the 

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

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

22 planning consultation (as defined in section 

23 1861(bbb))’’. 
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1 (2) COINSURANCE.—Section 1833(a)(1) of the 

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

3 amended— 

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

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

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

7 after ‘‘80 percent’’; and 

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

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

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

11 after ‘‘80 percent’’. 

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

13 1848(j)(3) of the Social Security Act (42 U.S.C. 1395w– 

14 4(j)(3)), as amended by section 611(c) of the Medicare 

15 Prescription Drug, Improvement, and Modernization Act 

16 of 2003 (Public Law 108–173; 117 Stat. 2304), is amend17 ed by inserting ‘‘(2)(AA),’’ after ‘‘(2)(W),’’. 

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

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

20 amended by section 613(c) of the Medicare Prescription 

21 Drug, Improvement, and Modernization Act of 2003 (Pub22 lic Law 108–173; 117 Stat. 2306), is amended— 

23 (1) by striking ‘‘and’’ at the end of subpara24 graph (L); 
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1 (2) by striking the semicolon at the end of sub2 paragraph (M) and inserting ‘‘, and’’; and 

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

5 ‘‘(N) in the case of end-of-life planning con6 sultations (as defined in section 1861(bbb)), which 

7 are performed more frequently than is covered under 

8 paragraph (2) of such section;’’. 

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

10 this section shall apply to services furnished on or after 

11 January 1, 2005. 

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

13 AND PORTABILITY OF ADVANCE DIRECTIVES. 

14 (a) MEDICARE.—Section 1866(f) of the Social Secu15 rity Act (42 U.S.C. 1395cc(f)) is amended— 

16 (1) in paragraph (1)— 

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

18 ‘‘and if presented by the individual (or on be19 half of the individual), to include the content of 

20 such advance directive in a prominent part of 

21 such record’’ before the semicolon at the end; 

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

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

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

25 period at the end and inserting ‘‘; and’’; and 
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1 (D) by inserting after subparagraph (E) 

2 the following new subparagraph: 

3 ‘‘(F) to provide each individual with the oppor4 tunity to discuss issues relating to the information 

5 provided to that individual pursuant to subparagraph 

6 (A) with an appropriately trained professional.’’; 

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

8 and inserting ‘‘an’’; and 

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

10 paragraph: 

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

12 (1), a provider of services, Medicare Advantage organiza13 tion, or prepaid or eligible organization (as the case may 

14 be) shall give effect to an advance directive executed out15 side the State in which such directive is presented, even 

16 one that does not appear to meet the formalities of execu17 tion, form, or language required by the State in which it 

18 is presented to the same extent as such provider or organi19 zation would give effect to an advance directive that meets 

20 such requirements, except that a provider or organization 

21 may decline to honor such a directive if the provider or 

22 organization can reasonably demonstrate that it is not an 

23 authentic expression of the individual’s wishes concerning 

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

25 be construed to authorize the administration of medical 
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1 treatment otherwise prohibited by the laws of the State 

2 in which the directive is presented. 

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

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

5 such provisions. The provisions of this paragraph shall not 

6 preempt any State law that provides for greater port7 ability, more deference to a patient’s wishes, or more lati8 tude in determining a patient’s wishes.’’. 

9 (b) MEDICAID.—Section 1902(w) of the Social Secu10 rity Act (42 U.S.C. 1396a(w)) is amended— 

11 (1) in paragraph (1)— 

12 (A) in subparagraph (B)— 

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

14 medical record’’ and inserting ‘‘in a promi15 nent part of the individual’s current med16 ical record’’; and 

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

18 the individual (or on behalf of the indi19 vidual), to include the content of such ad20 vance directive in a prominent part of such 

21 record’’ before the semicolon at the end; 

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

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

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

25 period at the end and inserting ‘‘; and’’; and 
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1 (D) by inserting after subparagraph (E) 

2 the following new subparagraph: 

3 ‘‘(F) to provide each individual with the oppor4 tunity to discuss issues relating to the information 

5 provided to that individual pursuant to subpara6 graph (A) with an appropriately trained profes7 sional.’’; 

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

9 and inserting ‘‘an’’; and 

10 (3) by adding at the end the following para11 graph: 

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

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

14 give effect to an advance directive executed outside the 

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

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

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

18 to the same extent as such provider or organization would 

19 give effect to an advance directive that meets such require20 ments, except that a provider or organization may decline 

21 to honor such a directive if the provider or organization 

22 can reasonably demonstrate that it is not an authentic ex23 pression of the individual’s wishes concerning his or her 

24 health care. Nothing in this paragraph shall be construed 

25 to authorize the administration of medical treatment oth-
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1 erwise prohibited by the laws of the State in which the 

2 directive is presented. 

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

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

5 such provisions. The provisions of this paragraph shall not 

6 preempt any State law that provides for greater port7 ability, more deference to a patient’s wishes, or more lati8 tude in determining a patient’s wishes.’’. 

9 (c) EFFECTIVE DATES.— 

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

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

12 shall apply to provider agreements and contracts en13 tered into, renewed, or extended under title XVIII of 

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

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

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

17 Secretary of Health and Human Services specifies, 

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

19 after the date of enactment of this Act. 

20 (2) EXTENSION OF EFFECTIVE DATE FOR

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

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

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

24 and Human Services determines requires State legis25 lation in order for the plan to meet the additional 
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1 requirements imposed by the amendments made by 

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

3 as failing to comply with the requirements of such 

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

5 additional requirements before the first day of the 

6 first calendar quarter beginning after the close of 

7 the first regular session of the State legislature that 

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

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

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

11 of the session is considered to be a separate regular 

12 session of the State legislature. 

13 SEC. 5. INCREASING AWARENESS OF THE IMPORTANCE OF 

14 END-OF-LIFE PLANNING. 

15 Title III of the Public Health Service Act is amended 

16 by adding at the end the following new part: 

17 ‘‘PART R—PROGRAMS TO INCREASE AWARENESS 

18 OF ADVANCE DIRECTIVE PLANNING ISSUES 

19 ‘‘SEC. 399Z–1. ADVANCE DIRECTIVE EDUCATION CAM20 PAIGNS AND INFORMATION CLEARING21 HOUSES. 

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

23 The Secretary shall, directly or through grants awarded 

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

25 campaign— 
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1 ‘‘(1) to raise public awareness of the impor2 tance of planning for care near the end of life; 

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

4 the various situations in which individuals may find 

5 themselves if they become unable to express their 

6 health care wishes; 

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

8 legal documents that express an individual’s wishes, 

9 through advance directives (including living wills, 

10 comfort care orders, and durable powers of attorney 

11 for health care); and 

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

13 of hospice care and palliative care. 

14 ‘‘(b) INFORMATION CLEARINGHOUSE.—The Sec15 retary, directly or through grants awarded under sub16 section (c), shall provide for the establishment of a na17 tional, toll-free, information clearinghouse as well as clear18 inghouses that the public may access to find out about 

19 State-specific information regarding advance directive and 

20 end-of-life decisions. 

21 ‘‘(c) GRANTS.— 

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

23 least 60 percent of the funds appropriated under 

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

25 public or nonprofit private entities (including States 
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1 or political subdivisions of a State), or a consortium 

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

3 education campaigns under subsection (a) and estab4 lishing information clearinghouses under subsection 

5 (b). 

6 ‘‘(2) PERIOD.—Any grant awarded under para7 graph (1) shall be for a period of 3 years. 

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

9 are authorized to be appropriated to carry out this section 

10 $25,000,000.’’. 

11 SEC. 6. GAO STUDIES AND REPORTS ON END-OF-LIFE PLAN12 NING ISSUES. 

13 (a) STUDY AND REPORT ON COMPLIANCE WITH AD14 VANCE DIRECTIVES AND OTHER ADVANCE PLANNING

15 DOCUMENTS.— 

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

17 United States shall conduct a study on the effective18 ness of advance directives in making patients’ wishes 

19 known and honored by health care providers. 

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

21 18 months after the date of enactment of this Act, 

22 the Comptroller General shall submit to Congress a 

23 report on this study conducted under paragraph (1) 

24 together with recommendations for such legislation 
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1 and administrative action as the Comptroller Gen2 eral determines to be appropriate. 

3 (b) 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 imple7 mentation of the amendments made by section 3 (re8 lating to medicare coverage of end-of-life planning 

9 consultations). 

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

11 date of enactment of this Act, the Comptroller Gen12 eral shall submit to Congress a report on this study 

13 conducted under paragraph (1) together with rec14 ommendations for such legislation and administra15 tive action as the Comptroller General determines to 

16 be appropriate. 

17 (c) STUDY AND REPORT ON ESTABLISHMENT OF NA18 TIONAL ADVANCE DIRECTIVE REGISTRY.— 

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

20 United States shall conduct a study on the feasi21 bility of a national registry for advance directives, 

22 taking into consideration the constraints created by 

23 the privacy provisions enacted as a result of the 

24 Health Insurance Portability and Accountability Act. 
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1 (2) REPORT.—Not later than 18 months after 

2 the date of enactment of this Act, the Comptroller 

3 General shall submit to Congress a report on this 

4 study conducted under paragraph (1) together with 

5 recommendations for such legislation and adminis6 trative action as the Comptroller General determines 

7 to be appropriate. 

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