I

106TH CONGRESS

1ST SESSION H. R. 1149

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

clarify 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 HOUSE OF REPRESENTATIVES

MARCH 17, 1999

Mr. LEVIN (for himself, Mr. GREENWOOD, Ms. HOOLEY of Oregon, Mr.

GEORGE MILLER of California, Mr. FROST, Mrs. MORELLA, Mrs.

MALONEY of New York, Mr. SANDLIN, and Ms. SLAUGHTER) introduced

the following bill; which was referred to the Committee on 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

to expand and clarify 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,
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1 SECTION 1. SHORT TITLE; TABLE OF CONTENTS.

2 (a) SHORT TITLE.—This Act may be cited as the

3 ‘‘Advance Planning and Compassionate Care Act of

4 1999’’.

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

6 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. Expansion of advance directives.

Sec. 4. Study and recommendations to Congress on issues relating to advance

directive expansion.

Sec. 5. Study and legislative proposal to Congress.

Sec. 6. National information hotline for end-of-life decisionmaking.

Sec. 7. Evaluation of and demonstration projects for innovative and new approaches to end-of-life care for medicare beneficiaries.

Sec. 8. Medicare coverage of self-administered medication for certain patients

with chronic pain.

Sec. 9. Annual reports on quality of end-of-life care under the medicare program.

7 SEC. 2. DEVELOPMENT OF STANDARDS TO ASSESS END-OF8 LIFE CARE.

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

10 Human Services, through the Administrator of the Health

11 Care Financing Administration, the Director of the Na12 tional Institutes of Health, and the Administrator of the

13 Agency for Health Care Policy and Research, shall develop

14 outcome standards and measures to evaluate the perform15 ance of health care programs and projects that provide

16 end-of-life care to individuals and the quality of such care.

17 (b) REPORT TO CONGRESS.—Not later that 2 years

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

19 of Health and Human Services shall submit a report to
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1 Congress regarding the outcome standards and measures

2 developed pursuant to subsection (a).

3 SEC. 3. EXPANSION OF ADVANCE DIRECTIVES.

4 (a) MEDICARE.—Section 1866(f) of the Social Secu5 rity Act (42 U.S.C. 1395cc(f)) is amended—

6 (1) in paragraph (1)—

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

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

9 the content of such advance directive in a

10 prominent part of such record’’ before the semi11 colon;

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

13 ‘‘and’’ at the end;

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

15 period and inserting ‘‘; and’’; and

16 (D) by inserting after subparagraph (E)

17 the following:

18 ‘‘(F) to provide each individual with the oppor19 tunity to discuss issues relating to the information

20 provided to that individual pursuant to subpara21 graph (A) with an appropriately trained profes22 sional.’’; and

23 (2) by adding at the end the following:

24 ‘‘(4)(A) An advance directive validly executed outside

25 of the State in which such advance directive is presented
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1 by an adult individual to a provider of services or a pre2 paid or eligible organization shall be given the same effect

3 by that provider or organization as an advance directive

4 validly executed under the law of the State in which it

5 is presented would be given effect.

6 ‘‘(B) Nothing in this paragraph shall be construed

7 to authorize the administration, withholding, or with8 drawal of health care unless it is consistent with the laws

9 of the State in which an advance directive is presented.

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

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

12 such provisions. The provisions of this paragraph shall not

13 preempt any State law that provides for greater port14 ability, more deference to a patient’s wishes, or more lati15 tude in determining a patient’s wishes.’’.

16 (b) MEDICAID.—Section 1902(w) of the Social Secu17 rity Act (42 U.S.C. 1396a(w)) is amended—

18 (1) in paragraph (1)—

19 (A) in subparagraph (B)—

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

21 medical record’’ and inserting ‘‘in a promi22 nent part of the individual’s current med23 ical record’’; and

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

25 the individual, to include the content of
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1 such advance directive in a prominent part

2 of such record’’ before the semicolon;

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

4 ‘‘and’’ at the end;

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

6 period and inserting ‘‘; and’’; and

7 (D) by inserting after subparagraph (E)

8 the following:

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.’’; and

14 (2) by adding at the end the following:

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

16 of the State in which such advance directive is presented

17 by an adult individual to a provider or organization shall

18 be given the same effect by that provider or organization

19 as an advance directive validly executed under the law of

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

21 ‘‘(B) Nothing in this paragraph shall be construed

22 to authorize the administration, withholding, or with23 drawal of health care otherwise prohibited by the laws of

24 the State in which an advance directive is presented.
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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) EFFECTIVE DATES.—

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

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

10 shall apply to provider agreements entered into, re11 newed, or extended under title XVIII of the Social

12 Security Act, and to State plans under title XIX of

13 such Act, on or after such date (not later than 1

14 year after the date of the enactment of this Act) as

15 the Secretary of Health and Human Services speci16 fies.

17 (2) EXTENSION OF EFFECTIVE DATE FOR

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

19 plan under title XIX of the Social Security Act

20 which the Secretary of Health and Human Services

21 determines requires State legislation in order for the

22 plan to meet the additional requirements imposed by

23 the amendments made by subsection (b), the State

24 plan shall not be regarded as failing to comply with

25 the requirements of such title solely on the basis of
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1 its failure to meet these additional requirements be2 fore the first day of the first calendar quarter begin3 ning after the close of the first regular session of the

4 State legislature that begins after the date of the en5 actment of this Act. For purposes of the previous

6 sentence, in the case of a State that has a 2-year

7 legislative session, each year of the session is consid8 ered to be a separate regular session of the State

9 legislature.

10 SEC. 4. STUDY AND RECOMMENDATIONS TO CONGRESS ON

11 ISSUES RELATING TO ADVANCE DIRECTIVE

12 EXPANSION.

13 (a) STUDY.—The Secretary of Health and Human

14 Services shall conduct a thorough study regarding the im15 plementation of the amendments made by section 3 of this

16 Act.

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

18 date of enactment of this Act, the Secretary of Health and

19 Human Services shall submit a report to Congress that

20 contains a detailed statement of the findings and conclu21 sions of the Secretary regarding the study conducted pur22 suant to subsection (a), together with the Secretary’s rec23 ommendations for such legislation and administrative ac24 tions as the Secretary considers appropriate.
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1 SEC. 5. STUDY AND LEGISLATIVE PROPOSAL TO CONGRESS.

2 (a) STUDY.—

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

4 Human Services shall conduct a thorough study of

5 all matters relating to the creation of a national uni6 form policy on advance directives for individuals re7 ceiving items and services under titles XVIII and

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

9 seq., 1396 et seq.).

10 (2) MATTERS STUDIED.—The matters studied

11 by the Secretary of Health and Human Services

12 shall include issues concerning—

13 (A) the election or refusal of life-sustaining

14 treatment;

15 (B) the provision of adequate palliative

16 care including pain management;

17 (C) the portability of advance directives,

18 including the cases involving the transfer of an

19 individual from one health care setting to an20 other;

21 (D) immunity for health care providers

22 that follow the instructions in an individual’s

23 advance directive;

24 (E) exemptions for health care providers

25 from following the instructions in an individ26 ual’s advance directive;
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1 (F) conditions under which an advance di2 rective is operative;

3 (G) revocation of an advance directive by

4 an individual;

5 (H) the criteria for determining that an in6 dividual is in terminal status; and

7 (I) surrogate decision making regarding

8 end of life care.

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

10 months after the date of enactment of this Act, the Sec11 retary of Health and Human Services shall submit a re12 port to Congress that contains a detailed description of

13 the results of the study conducted pursuant to subsection

14 (a).

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

16 developing the report under this section, the Secretary of

17 Health and Human Services shall consult with physicians

18 and other health care provider groups, consumer groups,

19 the Uniform Law Commissioners, and other interested

20 parties.

21 SEC. 6. NATIONAL INFORMATION HOTLINE FOR END-OF22 LIFE DECISIONMAKING.

23 The Secretary of Health and Human Services,

24 through the Administrator of the Health Care Financing

25 Administration, shall establish and operate directly, or by
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1 grant, contract, or interagency agreement, out of funds

2 otherwise appropriated to the Secretary, a clearinghouse

3 and 24-hour toll-free telephone hotline, to provide con4 sumer information about advance directives, as defined in

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

6 1395cc(f)(3)), and end-of-life decisionmaking.

7 SEC. 7. EVALUATION OF AND DEMONSTRATION PROJECTS

8 FOR INNOVATIVE AND NEW APPROACHES TO

9 END-OF-LIFE CARE FOR MEDICARE BENE10 FICIARIES.

11 (a) DEFINITIONS.—In this section:

12 (1) MEDICARE BENEFICIARIES.—The term

13 ‘‘medicare beneficiaries’’ means individuals who are

14 entitled to benefits under part A or eligible for bene15 fits under part B of the medicare program.

16 (2) MEDICARE PROGRAM.—The term ‘‘medicare

17 program’’ means the health care program under title

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

19 seq.).

20 (3) SECRETARY.—The term ‘‘Secretary’’ means

21 the Secretary of Health and Human Services.

22 (b) EVALUATION OF EXISTING PROGRAMS.—

23 (1) IN GENERAL.—The Secretary, through the

24 Administrator of the Health Care Financing Admin25 istration, shall conduct ongoing evaluations of inno-
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1 vative health care programs that provide end-of-life

2 care to medicare beneficiaries who are seriously ill or

3 who suffer from a medical condition that is likely to

4 be fatal.

5 (2) REQUIREMENTS.—Evaluations conducted

6 under this subsection shall include the following:

7 (A) Evidence that the evaluated program

8 implements practices or procedures that result

9 in improved patient outcomes, resource utiliza10 tion, or both.

11 (B) A definition of the population served

12 by the program and a determination as to how

13 accurately that population reflects the total

14 medicare beneficiaries in the area who are in

15 need of services offered by the program.

16 (C) A description of the eligibility require17 ments and enrollment procedures for the pro18 gram.

19 (D) A detailed description of the services

20 provided to medicare beneficiaries served by the

21 program and the utilization rates for such serv22 ices.

23 (E) A description of the structure for the

24 provision of specific services.
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1 (F) A detailed accounting of the costs of

2 providing specific services under the program.

3 (G) A description of any procedures for of4 fering medicare beneficiaries a choice of services

5 and how the program responds to the pref6 erences of the medicare beneficiaries served by

7 the program.

8 (H) An assessment of the quality of care

9 and of the outcomes for medicare beneficiaries

10 and the families of such beneficiaries served by

11 the program.

12 (I) An assessment of any ethical, cultural,

13 or legal concerns regarding the evaluated pro14 gram and with the replication of such program

15 in other settings.

16 (J) Identification of any changes to regula17 tions, or of any additional funding, that would

18 result in more efficient procedures or improved

19 outcomes, for the program.

20 (3) EXTERNAL EVALUATORS.—The Secretary

21 shall contract with 1 or more external evaluators to

22 coordinate and conduct the evaluations required

23 under this subsection and under subsection (c)(4).

24 (4) USE OF OUTCOME MEASURES AND STAND25 ARDS.—An evaluation conducted under this sub-
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1 section and subsection (c)(4) shall use the outcome

2 standards and measures required to be developed

3 under section 2 as soon as those standards and

4 measures are available.

5 (c) DEMONSTRATION PROJECTS.—

6 (1) AUTHORITY.—The Secretary, through the

7 Administrator of the Health Care Financing Admin8 istration, shall conduct demonstration projects to de9 velop new and innovative approaches to providing

10 end-of-life care to medicare beneficiaries who are se11 riously ill or who suffer from a medical condition

12 that is likely to be fatal.

13 (2) APPLICATION.—Any entity seeking to con14 duct a demonstration project under this subsection

15 shall submit to the Secretary an application in such

16 form and manner as the Secretary may require.

17 (3) SELECTION CRITERIA.—

18 (A) IN GENERAL.—In selecting entities to

19 conduct demonstration projects under this sub20 section, the Secretary shall select entities that

21 will allow for demonstration projects to be con22 ducted in a variety of States, in an array of

23 care settings, and that reflect—

24 (i) a balance between urban and rural

25 settings;
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1 (ii) cultural diversity; and

2 (iii) various modes of medical care

3 and insurance, such as fee-for-service, pre4 ferred provider organizations, health main5 tenance organizations, hospice care, home

6 care services, long-term care, and inte7 grated delivery systems.

8 (B) PREFERENCES.—The Secretary shall

9 give preference to applications for demonstra10 tion projects that—

11 (i) will serve medicare beneficiaries

12 who are dying of illnesses that are most

13 prevalent under the medicare program, in14 cluding cancer, heart failure, chronic ob15 structive respiratory disease, dementia,

16 stroke, and progressive multifactorial frail17 ty associated with advanced age; and

18 (ii) appear capable of sustained serv19 ice and broad replication at a reasonable

20 cost within commonly available organiza21 tional structures.

22 (4) EVALUATIONS.—Each demonstration

23 project conducted under this subsection shall be

24 evaluated at such regular intervals as the Secretary

25 determines are appropriate. An evaluation of a
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1 project conducted under this subsection shall include

2 the items described in subsection (b)(2) and the fol3 lowing:

4 (A) A comparison of the quality of care

5 and of the outcomes for medicare beneficiaries

6 and the families of such beneficiaries served by

7 the demonstration project to the quality of care

8 and outcomes for such individuals that would

9 have resulted if care had been provided under

10 existing delivery systems.

11 (B) An analysis of how ongoing measures

12 of quality and accountability for improvement

13 and excellence could be incorporated into the

14 demonstration project.

15 (C) A comparison of the costs of the care

16 provided to medicare beneficiaries under the

17 demonstration project to the costs of that care

18 if it had been provided under the medicare pro19 gram.

20 (5) WAIVER AUTHORITY.—The Secretary may

21 waive compliance with any requirement of titles XI,

22 XVIII, and XIX of the Social Security Act (42

23 U.S.C. 1301 et seq., 1395 et seq., 1396 et seq.)

24 which, if applied, would prevent a demonstration
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1 project carried out under this subsection from effec2 tively achieving the purpose of such a project.

3 (d) ANNUAL REPORTS TO CONGRESS.—

4 (1) IN GENERAL.—Beginning 1 year after the

5 date of enactment of this Act, and annually there6 after, the Secretary shall submit to Congress a re7 port on the quality of end-of-life care under the

8 medicare program, together with any suggestions for

9 legislation to improve the quality of such care under

10 that program.

11 (2) SUMMARY OF RECENT STUDIES.—A report

12 submitted under this subsection shall include a sum13 mary of any recent studies and advice from experts

14 in the health care field regarding the ethical, cul15 tural, and legal issues that may arise when attempt16 ing to improve the health care system to meet the

17 needs of individuals with serious and eventually fatal

18 illnesses.

19 (3) CONTINUATION OR REPLICATION OF DEM20 ONSTRATION PROJECTS.—Beginning 3 years after

21 the date of enactment of this Act, the report re22 quired under this subsection shall include rec23 ommendations regarding whether the demonstration

24 projects conducted under subsection (c) should be
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1 continued and whether broad replication of any of

2 those projects should be initiated.

3 (e) FUNDING.—The Secretary shall provide for the

4 transfer from the Federal Hospital Insurance Trust Fund

5 established under section 1817 of the Social Security Act

6 (42 U.S.C. 1395i) of such sums as are necessary for the

7 costs of conducting evaluations under subsection (b), con8 ducting demonstration projects under subsection (c), and

9 preparing and submitting the annual reports required

10 under subsection (d). Amounts may be transferred under

11 the preceding sentence without regard to amounts appro12 priated in advance in appropriations Acts.

13 SEC. 8. MEDICARE COVERAGE OF SELF-ADMINISTERED

14 MEDICATION FOR CERTAIN PATIENTS WITH

15 CHRONIC PAIN.

16 (a) IN GENERAL.—Section 1861(s)(2) of the Social

17 Security Act (42 U.S.C. 1395x(s)(2)) is amended—

18 (1) by striking ‘‘and’’ at the end of subpara19 graph (S);

20 (2) in subparagraph (T), by striking the period

21 at the end and inserting ‘‘; and’’; and

22 (3) by inserting after subparagraph (T) the fol23 lowing:

24 ‘‘(U) self-administered drugs which may be dis25 pensed only upon prescription and which are pre-
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1 scribed for the relief of chronic pain in patients with

2 a life-threatening disease or condition;’’.

3 (b) EFFECTIVE DATE.—The amendments made by

4 subsection (a) shall apply to items and services furnished

5 on or after January 1, 2000.

6 SEC. 9. ANNUAL REPORTS ON QUALITY OF END-OF-LIFE

7 CARE UNDER THE MEDICARE PROGRAM.

8 Beginning 1 year after the date of the enactment of

9 this Act and annually thereafter, the Secretary of Health

10 and Human Services shall submit to Congress a report

11 on the quality of end-of-life care under the medicare pro12 gram. The Secretary shall include in such reports such

13 recommendations for legislation to improve the quality of

14 such care under that program as the Secretary deems ap15 propriate.

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