II 

Calendar No. 49 

109TH CONGRESS 

1ST SESSION S. 570 

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 

MARCH 9, 2005 

Mr. NELSON of Florida introduced the following bill; which was read the first 

time 

MARCH 10, 2005 

Read the second time and placed on the calendar 

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 
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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 Education Act of 2005’’. 

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

7 this Act is as follows: 

Sec. 1. Short title; table of contents. 

Sec. 2. Findings and purposes. 

Sec. 3. Improvement of policies related to the use and portability of advance 

directives. 

Sec. 4. Increasing awareness of the importance of End-of-Life planning. 

Sec. 5. GAO study and report on establishment of national advance directive 

registry. 

Sec. 6. Advance directives at State department of motor vehicles. 

8 SEC. 2. FINDINGS AND PURPOSES. 

9 (a) FINDINGS.—Congress makes the following find10 ings: 

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

12 United States. Eighty percent of those people die in 

13 institutions such as hospitals, nursing homes, and 

14 other facilities. Chronic illnesses, such as cancer and 

15 heart disease, account for 2 out of every 3 deaths. 

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

17 Journal of the American Medical Association con18 cluded that many people dying in institutions have 
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1 unmet medical, psychological, and spiritual needs. 

2 Moreover, family members of decedents who received 

3 care at home with hospice services were more likely 

4 to report a favorable dying experience. 

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

6 States, in its decisions in Washington v. Glucksberg 

7 and Vacco v. Quill, reaffirmed the constitutional 

8 right of competent adults to refuse unwanted med9 ical treatment. In those cases, the Court stressed the 

10 use of advance directives as a means of safeguarding 

11 that right should those adults become incapable of 

12 deciding for themselves. 

13 (4) A study published in 2002 estimated that 

14 the overall prevalence of advance directives is be15 tween 15 and 20 percent of the general population, 

16 despite the passage of the Patient Self-Determina17 tion Act in 1990, which requires that health care 

18 providers tell patients about advance directives. 

19 (5) Competent adults should complete advance 

20 care plans stipulating their health care decisions in 

21 the event that they become unable to speak for 

22 themselves. Through the execution of advance direc23 tives, including living wills and durable powers of at24 torney for health care according to the laws of the 

25 State in which they reside, individuals can protect 
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1 their right to express their wishes and have them re2 spected. 

3 (b) PURPOSES.—The purposes of this Act are to im4 prove access to information about individuals’ health care 

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

6 promote advance care planning and decisionmaking so 

7 that individuals’ wishes are known should they become un8 able to speak for themselves, to engage health care pro9 viders in disseminating information about and assisting in 

10 the preparation of advance directives, which include living 

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

12 for other purposes. 

13 SEC. 3. IMPROVEMENT OF POLICIES RELATED TO THE USE 

14 AND PORTABILITY OF ADVANCE DIRECTIVES. 

15 (a) MEDICARE.—Section 1866(f) of the Social Secu16 rity Act (42 U.S.C. 1395cc(f)) is amended— 

17 (1) in paragraph (1)— 

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

19 ‘‘and if presented by the individual (or on be20 half of the individual), to include the content of 

21 such advance directive in a prominent part of 

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

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

24 ‘‘and’’ after the semicolon at the end; 
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1 (C) in subparagraph (E), by striking the 

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

3 (D) by inserting after subparagraph (E) 

4 the following new subparagraph: 

5 ‘‘(F) to provide each individual with the oppor6 tunity to discuss issues relating to the information 

7 provided to that individual pursuant to subpara8 graph (A) with an appropriately trained profes9 sional.’’; 

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

11 and inserting ‘‘an’’; and 

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

13 paragraph: 

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

15 (1), a provider of services, Medicare Advantage organiza16 tion, or prepaid or eligible organization (as the case may 

17 be) shall give effect to an advance directive executed out18 side the State in which such directive is presented, even 

19 one that does not appear to meet the formalities of execu20 tion, form, or language required by the State in which it 

21 is presented to the same extent as such provider or organi22 zation would give effect to an advance directive that meets 

23 such requirements, except that a provider or organization 

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

25 organization can reasonably demonstrate that it is not an 
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1 authentic expression of the individual’s wishes concerning 

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

3 be construed to authorize the administration of medical 

4 treatment otherwise prohibited by the laws of the State 

5 in which the directive is presented. 

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

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

8 such provisions. The provisions of this paragraph shall not 

9 preempt any State law that provides for greater port10 ability, more deference to a patient’s wishes, or more lati11 tude in determining a patient’s wishes.’’. 

12 (b) MEDICAID.—Section 1902(w) of the Social Secu13 rity Act (42 U.S.C. 1396a(w)) is amended— 

14 (1) in paragraph (1)— 

15 (A) in subparagraph (B)— 

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

17 medical record’’ and inserting ‘‘in a promi18 nent part of the individual’s current med19 ical record’’; and 

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

21 the individual (or on behalf of the indi22 vidual), to include the content of such ad23 vance directive in a prominent part of such 

24 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 (4), by striking ‘‘a written’’ 

13 and inserting ‘‘an’’; and 

14 (3) by adding at the end the following para15 graph: 

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

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

18 give effect to an advance directive executed outside the 

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

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

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

22 to the same extent as such provider or organization would 

23 give effect to an advance directive that meets such require24 ments, except that a provider or organization may decline 

25 to honor such a directive if the provider or organization 
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1 can reasonably demonstrate that it is not an authentic ex2 pression of the individual’s wishes concerning his or her 

3 health care. Nothing in this paragraph shall be construed 

4 to authorize the administration of medical treatment oth5 erwise prohibited by the laws of the State in which the 

6 directive is presented. 

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

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

9 such provisions. The provisions of this paragraph shall not 

10 preempt any State law that provides for greater port11 ability, more deference to a patient’s wishes, or more lati12 tude in determining a patient’s wishes.’’. 

13 (c) EFFECTIVE DATES.— 

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

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

16 shall apply to provider agreements and contracts en17 tered into, renewed, or extended under title XVIII of 

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

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

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

21 Secretary of Health and Human Services specifies, 

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

23 after the date of enactment of this Act. 

24 (2) EXTENSION OF EFFECTIVE DATE FOR

25 STATE LAW AMENDMENT.—In the case of a State 
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1 plan under title XIX of the Social Security Act (42 

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

3 and Human Services determines requires State legis4 lation in order for the plan to meet the additional 

5 requirements imposed by the amendments made by 

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

7 as failing to comply with the requirements of such 

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

9 additional requirements before the first day of the 

10 first calendar quarter beginning after the close of 

11 the first regular session of the State legislature that 

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

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

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

15 of the session is considered to be a separate regular 

16 session of the State legislature. 

17 SEC. 4. INCREASING AWARENESS OF THE IMPORTANCE OF 

18 END-OF-LIFE PLANNING. 

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

20 241 et seq.) is amended by adding at the end the following 

21 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 ‘‘The Secretary shall provide for the establishment of 

7 a national, toll-free, information clearinghouse as well as 

8 clearinghouses that the public may access to find out 

9 about State-specific information regarding advance direc10 tive and end-of-life decisions.’’. 

11 SEC. 5. GAO STUDY AND REPORT ON ESTABLISHMENT OF 

12 NATIONAL ADVANCE DIRECTIVE REGISTRY. 

13 (a) STUDY.—The Comptroller General of the United 

14 States shall conduct a study on the feasibility of a national 

15 registry for advance directives, taking into consideration 

16 the constraints created by the privacy provisions enacted 

17 as a result of the Health Insurance Portability and Ac18 countability Act. 

19 (b) REPORT.—Not later than 18 months after the 

20 date of enactment of this Act, the Comptroller General 

21 of the United States shall submit to Congress a report 

22 on the study conducted under subsection (a) together with 

23 recommendations for such legislation and administrative 

24 action as the Comptroller General of the United States 

25 determines to be appropriate. 
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1 SEC. 6. ADVANCE DIRECTIVES AT STATE DEPARTMENT OF 

2 MOTOR VEHICLES. 

3 Each State shall establish a program of providing in4 formation on the advance directives clearinghouse estab5 lished pursuant to section 399Z–1 of the Public Health 

6 Service Act to individuals who are residents of the State 

7 at such State’s department of motor vehicles. Such pro8 gram shall be modeled after the program of providing in9 formation regarding organ donation established at the 

10 State’s department of motor vehicles, if such State has 

11 such an organ donation program. 
Calendar No. 49 

109TH CONGRESS 

1ST SESSION S. 570 

A BILL 

To amend titles XVIII and XIX of the Social Secupurposes. powers of attorney for health care, and for other directives, which include living wills and durable about and assisting in the preparation of advance care providers in disseminating information unable to speak for themselves, to engage health viduals’ wishes are known should they become care planning and decisionmaking so that indi- care near the end of life, to promote advance viduals’ health care options and legal rights for Act to improve access to information about indi- rity Act and title III of the Public Health Service 

MARCH 10, 2005 

Read the second time and placed on the calendar