[Congressional Bills 106th Congress]
[From the U.S. Government Publishing Office]
[H.R. 1149 Introduced in House (IH)]







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.

    Be it enacted by the Senate and House of Representatives of the 
United States of America in Congress assembled,

SECTION 1. SHORT TITLE; TABLE OF CONTENTS.

    (a) Short Title.--This Act may be cited as the ``Advance Planning 
and Compassionate Care Act of 1999''.
    (b) Table of Contents.--The table of contents of 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.

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

    (a) In General.--The Secretary of Health and Human Services, 
through the Administrator of the Health Care Financing Administration, 
the Director of the National Institutes of Health, and the 
Administrator of the Agency for Health Care Policy and Research, shall 
develop outcome standards and measures to evaluate the performance of 
health care programs and projects that provide end-of-life care to 
individuals and the quality of such care.
    (b) Report to Congress.--Not later that 2 years after the date of 
the enactment of this Act, the Secretary of Health and Human Services 
shall submit a report to Congress regarding the outcome standards and 
measures developed pursuant to subsection (a).

SEC. 3. EXPANSION OF ADVANCE DIRECTIVES.

    (a) Medicare.--Section 1866(f) of the Social Security Act (42 
U.S.C. 1395cc(f)) is amended--
            (1) in paragraph (1)--
                    (A) in subparagraph (B), by inserting ``and if 
                presented by the individual, to include the content 
of such advance directive in a prominent part of such record'' before 
the semicolon;
                    (B) in subparagraph (D), by striking ``and'' at the 
                end;
                    (C) in subparagraph (E), by striking the period and 
                inserting ``; and''; and
                    (D) by inserting after subparagraph (E) the 
                following:
            ``(F) to provide each individual with the opportunity to 
        discuss issues relating to the information provided to that 
        individual pursuant to subparagraph (A) with an appropriately 
        trained professional.''; and
            (2) by adding at the end the following:
    ``(4)(A) An advance directive validly executed outside of the State 
in which such advance directive is presented by an adult individual to 
a provider of services or a prepaid or eligible organization shall be 
given the same effect by that provider or organization as an advance 
directive validly executed under the law of the State in which it is 
presented would be given effect.
    ``(B) Nothing in this paragraph shall be construed to authorize the 
administration, withholding, or withdrawal of health care unless it is 
consistent with the laws of the State in which an advance directive is 
presented.
    ``(C) The provisions of this paragraph shall preempt any State law 
to the extent such law is inconsistent with such provisions. The 
provisions of this paragraph shall not preempt any State law that 
provides for greater portability, more deference to a patient's wishes, 
or more latitude in determining a patient's wishes.''.
    (b) Medicaid.--Section 1902(w) of the Social Security Act (42 
U.S.C. 1396a(w)) is amended--
            (1) in paragraph (1)--
                    (A) in subparagraph (B)--
                            (i) by striking ``in the individual's 
                        medical record'' and inserting ``in a prominent 
                        part of the individual's current medical 
                        record''; and
                            (ii) by inserting ``and if presented by the 
                        individual, to include the content of such 
                        advance directive in a prominent part of such 
                        record'' before the semicolon;
                    (B) in subparagraph (D), by striking ``and'' at the 
                end;
                    (C) in subparagraph (E), by striking the period and 
                inserting ``; and''; and
                    (D) by inserting after subparagraph (E) the 
                following:
            ``(F) to provide each individual with the opportunity to 
        discuss issues relating to the information provided to that 
        individual pursuant to subparagraph (A) with an appropriately 
        trained professional.''; and
            (2) by adding at the end the following:
    ``(5)(A) An advance directive validly executed outside of the State 
in which such advance directive is presented by an adult individual to 
a provider or organization shall be given the same effect by that 
provider or organization as an advance directive validly executed under 
the law of the State in which it is presented would be given effect.
    ``(B) Nothing in this paragraph shall be construed to authorize the 
administration, withholding, or withdrawal of health care otherwise 
prohibited by the laws of the State in which an advance directive is 
presented.
    ``(C) The provisions of this paragraph shall preempt any State law 
to the extent such law is inconsistent with such provisions. The 
provisions of this paragraph shall not preempt any State law that 
provides for greater portability, more deference to a patient's wishes, 
or more latitude in determining a patient's wishes.''.
    (c) Effective Dates.--
            (1) In general.--Subject to paragraph (2), the amendments 
        made by subsections (a) and (b) shall apply to provider 
        agreements entered into, renewed, or extended under title XVIII 
        of the Social Security Act, and to State plans under title XIX 
        of such Act, on or after such date (not later than 1 year after 
        the date of the enactment of this Act) as the Secretary of 
        Health and Human Services specifies.
            (2) Extension of effective date for state law amendment.--
        In the case of a State plan under title XIX of the Social 
        Security Act which the Secretary of Health and Human Services 
        determines requires State legislation in order for the plan to 
        meet the additional requirements imposed by the amendments made 
        by subsection (b), the State plan shall not be regarded as 
        failing to comply with the requirements of such title solely on 
        the basis of its failure to meet these additional requirements 
        before the first day of the first calendar quarter beginning 
        after the close of the first regular session of the State 
        legislature that begins after the date of the enactment of this 
        Act. For purposes of the previous sentence, in the case of a 
        State that has a 2-year legislative session, each year of the 
        session is considered to be a separate regular session of the 
        State legislature.

SEC. 4. STUDY AND RECOMMENDATIONS TO CONGRESS ON ISSUES RELATING TO 
              ADVANCE DIRECTIVE EXPANSION.

    (a) Study.--The Secretary of Health and Human Services shall 
conduct a thorough study regarding the implementation of the amendments 
made by section 3 of this Act.
    (b) Report.--Not later than 18 months after the date of enactment 
of this Act, the Secretary of Health and Human Services shall submit a 
report to Congress that contains a detailed statement of the findings 
and conclusions of the Secretary regarding the study conducted pursuant 
to subsection (a), together with the Secretary's recommendations for 
such legislation and administrative actions as the Secretary considers 
appropriate.

SEC. 5. STUDY AND LEGISLATIVE PROPOSAL TO CONGRESS.

    (a) Study.--
            (1) In general.--The Secretary of Health and Human Services 
        shall conduct a thorough study of all matters relating to the 
        creation of a national uniform policy on advance directives for 
        individuals receiving items and services under titles XVIII and 
        XIX of the Social Security Act (42 U.S.C. 1395 et seq., 1396 et 
        seq.).
            (2) Matters studied.--The matters studied by the Secretary 
        of Health and Human Services shall include issues concerning--
                    (A) the election or refusal of life-sustaining 
                treatment;
                    (B) the provision of adequate palliative care 
                including pain management;
                    (C) the portability of advance directives, 
                including the cases involving the transfer of an 
                individual from one health care setting to another;
                    (D) immunity for health care providers that follow 
                the instructions in an individual's advance directive;
                    (E) exemptions for health care providers from 
                following the instructions in an individual's advance 
                directive;
                    (F) conditions under which an advance directive is 
                operative;
                    (G) revocation of an advance directive by an 
                individual;
                    (H) the criteria for determining that an individual 
                is in terminal status; and
                    (I) surrogate decision making regarding end of life 
                care.
    (b) Report to Congress.--Not later than 18 months after the date of 
enactment of this Act, the Secretary of Health and Human Services shall 
submit a report to Congress that contains a detailed description of the 
results of the study conducted pursuant to subsection (a).
    (c) Consultation.--In conducting the study and developing the 
report under this section, the Secretary of Health and Human Services 
shall consult with physicians and other health care provider groups, 
consumer groups, the Uniform Law Commissioners, and other interested 
parties.

SEC. 6. NATIONAL INFORMATION HOTLINE FOR END-OF-LIFE DECISIONMAKING.

    The Secretary of Health and Human Services, through the 
Administrator of the Health Care Financing Administration, shall 
establish and operate directly, or by grant, contract, or interagency 
agreement, out of funds otherwise appropriated to the Secretary, a 
clearinghouse and 24-hour toll-free telephone hotline, to provide 
consumer information about advance directives, as defined in section 
1866(f)(3) of the Social Security Act (42 U.S.C. 1395cc(f)(3)), and 
end-of-life decisionmaking.

SEC. 7. EVALUATION OF AND DEMONSTRATION PROJECTS FOR INNOVATIVE AND NEW 
              APPROACHES TO END-OF-LIFE CARE FOR MEDICARE 
              BENEFICIARIES.

    (a) Definitions.--In this section:
            (1) Medicare beneficiaries.--The term ``medicare 
        beneficiaries'' means individuals who are entitled to benefits 
        under part A or eligible for benefits under part B of the 
        medicare program.
            (2) Medicare program.--The term ``medicare program'' means 
        the health care program under title XVIII of the Social 
        Security Act (42 U.S.C. 1395 et seq.).
            (3) Secretary.--The term ``Secretary'' means the Secretary 
        of Health and Human Services.
    (b) Evaluation of Existing Programs.--
            (1) In general.--The Secretary, through the Administrator 
        of the Health Care Financing Administration, shall conduct 
        ongoing evaluations of innovative health care programs that 
        provide end-of-life care to medicare beneficiaries who are 
        seriously ill or who suffer from a medical condition that is 
        likely to be fatal.
            (2) Requirements.--Evaluations conducted under this 
        subsection shall include the following:
                    (A) Evidence that the evaluated program implements 
                practices or procedures that result in improved patient 
                outcomes, resource utilization, or both.
                    (B) A definition of the population served by the 
                program and a determination as to how accurately that 
                population reflects the total medicare beneficiaries in 
                the area who are in need of services offered by the 
                program.
                    (C) A description of the eligibility requirements 
                and enrollment procedures for the program.
                    (D) A detailed description of the services provided 
                to medicare beneficiaries served by the program and the 
                utilization rates for such services.
                    (E) A description of the structure for the 
                provision of specific services.
                    (F) A detailed accounting of the costs of providing 
                specific services under the program.
                    (G) A description of any procedures for offering 
                medicare beneficiaries a choice of services and how the 
                program responds to the preferences of the medicare 
                beneficiaries served by the program.
                    (H) An assessment of the quality of care and of the 
                outcomes for medicare beneficiaries and the families of 
                such beneficiaries served by the program.
                    (I) An assessment of any ethical, cultural, or 
                legal concerns regarding the evaluated program and with 
                the replication of such program in other settings.
                    (J) Identification of any changes to regulations, 
                or of any additional funding, that would result in more 
                efficient procedures or improved outcomes, for the 
                program.
            (3) External evaluators.--The Secretary shall contract with 
        1 or more external evaluators to coordinate and conduct the 
        evaluations required under this subsection and under subsection 
        (c)(4).
            (4) Use of outcome measures and standards.--An evaluation 
        conducted under this subsection and subsection (c)(4) shall use 
        the outcome standards and measures required to be developed 
        under section 2 as soon as those standards and measures are 
        available.
    (c) Demonstration Projects.--
            (1) Authority.--The Secretary, through the Administrator of 
        the Health Care Financing Administration, shall conduct 
        demonstration projects to develop new and innovative approaches 
        to providing end-of-life care to medicare beneficiaries who are 
        seriously ill or who suffer from a medical condition that is 
        likely to be fatal.
            (2) Application.--Any entity seeking to conduct a 
        demonstration project under this subsection shall submit to the 
        Secretary an application in such form and manner as the 
        Secretary may require.
            (3) Selection criteria.--
                    (A) In general.--In selecting entities to conduct 
                demonstration projects under this subsection, the 
                Secretary shall select entities that will allow for 
                demonstration projects to be conducted in a variety of 
                States, in an array of care settings, and that 
                reflect--
                            (i) a balance between urban and rural 
                        settings;
                            (ii) cultural diversity; and
                            (iii) various modes of medical care and 
                        insurance, such as fee-for-service, preferred 
                        provider organizations, health maintenance 
                        organizations, hospice care, home care 
                        services, long-term care, and integrated 
                        delivery systems.
                    (B) Preferences.--The Secretary shall give 
                preference to applications for demonstration projects 
                that--
                            (i) will serve medicare beneficiaries who 
                        are dying of illnesses that are most prevalent 
                        under the medicare program, including cancer, 
                        heart failure, chronic obstructive respiratory 
                        disease, dementia, stroke, and progressive 
                        multifactorial frailty associated with advanced 
                        age; and
                            (ii) appear capable of sustained service 
                        and broad replication at a reasonable cost 
                        within commonly available organizational 
                        structures.
            (4) Evaluations.--Each demonstration project conducted 
        under this subsection shall be evaluated at such regular 
        intervals as the Secretary determines are appropriate. An 
        evaluation of a project conducted under this subsection shall 
include the items described in subsection (b)(2) and the following:
                    (A) A comparison of the quality of care and of the 
                outcomes for medicare beneficiaries and the families of 
                such beneficiaries served by the demonstration project 
                to the quality of care and outcomes for such 
                individuals that would have resulted if care had been 
                provided under existing delivery systems.
                    (B) An analysis of how ongoing measures of quality 
                and accountability for improvement and excellence could 
                be incorporated into the demonstration project.
                    (C) A comparison of the costs of the care provided 
                to medicare beneficiaries under the demonstration 
                project to the costs of that care if it had been 
                provided under the medicare program.
            (5) Waiver authority.--The Secretary may waive compliance 
        with any requirement of titles XI, XVIII, and XIX of the Social 
        Security Act (42 U.S.C. 1301 et seq., 1395 et seq., 1396 et 
        seq.) which, if applied, would prevent a demonstration project 
        carried out under this subsection from effectively achieving 
        the purpose of such a project.
    (d) Annual Reports to Congress.--
            (1) In general.--Beginning 1 year after the date of 
        enactment of this Act, and annually thereafter, the Secretary 
        shall submit to Congress a report on the quality of end-of-life 
        care under the medicare program, together with any suggestions 
        for legislation to improve the quality of such care under that 
        program.
            (2) Summary of recent studies.--A report submitted under 
        this subsection shall include a summary of any recent studies 
        and advice from experts in the health care field regarding the 
        ethical, cultural, and legal issues that may arise when 
        attempting to improve the health care system to meet the needs 
        of individuals with serious and eventually fatal illnesses.
            (3) Continuation or replication of demonstration 
        projects.--Beginning 3 years after the date of enactment of 
        this Act, the report required under this subsection shall 
        include recommendations regarding whether the demonstration 
        projects conducted under subsection (c) should be continued and 
        whether broad replication of any of those projects should be 
        initiated.
    (e) Funding.--The Secretary shall provide for the transfer from the 
Federal Hospital Insurance Trust Fund established under section 1817 of 
the Social Security Act (42 U.S.C. 1395i) of such sums as are necessary 
for the costs of conducting evaluations under subsection (b), 
conducting demonstration projects under subsection (c), and preparing 
and submitting the annual reports required under subsection (d). 
Amounts may be transferred under the preceding sentence without regard 
to amounts appropriated in advance in appropriations Acts.

SEC. 8. MEDICARE COVERAGE OF SELF-ADMINISTERED MEDICATION FOR CERTAIN 
              PATIENTS WITH CHRONIC PAIN.

    (a) In General.--Section 1861(s)(2) of the Social Security Act (42 
U.S.C. 1395x(s)(2)) is amended--
            (1) by striking ``and'' at the end of subparagraph (S);
            (2) in subparagraph (T), by striking the period at the end 
        and inserting ``; and''; and
            (3) by inserting after subparagraph (T) the following:
            ``(U) self-administered drugs which may be dispensed only 
        upon prescription and which are prescribed for the relief of 
        chronic pain in patients with a life-threatening disease or 
        condition;''.
    (b) Effective Date.--The amendments made by subsection (a) shall 
apply to items and services furnished on or after January 1, 2000.

SEC. 9. ANNUAL REPORTS ON QUALITY OF END-OF-LIFE CARE UNDER THE 
              MEDICARE PROGRAM.

    Beginning 1 year after the date of the enactment of this Act and 
annually thereafter, the Secretary of Health and Human Services shall 
submit to Congress a report on the quality of end-of-life care under 
the medicare program. The Secretary shall include in such reports such 
recommendations for legislation to improve the quality of such care 
under that program as the Secretary deems appropriate.
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