Advance Planning and Compassionate Care Act of 1999 - Directs the Secretary of Health and Human Services to develop outcome standards and measures to evaluate health care program and project performance in providing quality end-of-life care and to report to Congress on such development.
Amends titles XVIII (Medicare) and XIX (Medicaid) of the Social Security Act, as amended by the Balanced Budget Act of 1997, with regard to advance directives in order to: (1) require service providers and eligible organizations to provide an appropriately trained professional for discussing advance directive issues with all adult individuals receiving medical care by or through such entities; and (2) ensure that an advance directive valid in one State will be honored in another State.
Requires the Secretary to study and report to Congress on: (1) the implementation of this Act; and (2) all matters relating to the creation of a national uniform policy on advance directives.
Requires the Secretary, through the Health Care Financing Administration (HCFA), to: (1) establish and operate a clearinghouse and 24-hour toll-free telephone hotline to provide consumer information about advance directives and end-of-life decision making; (2) 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; and (3) conduct demonstration projects to develop new and innovative approaches to providing such end-of-life care.
Directs the Secretary to report annually to Congress on the quality of end-of-life care under Medicare, together with any suggestions for legislation to improve the quality of such care.
Provides for necessary funding of such evaluations, demonstration projects, and annual reports.
Amends SSA title XVIII, as amended by the Balanced Budget Act of 1997, to provide for Medicare coverage of self-administered prescription drugs which are prescribed for the relief of chronic pain in patients with a life-threatening disease or condition.
Directs the Secretary to report annually to Congress on the quality of end-of-life care under Medicare, together with recommendations for appropriate legislation to improve the quality of such care.
[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.
<all>
Introduced in House
Introduced in House
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.
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.
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.
Sponsor introductory remarks on measure. (CR E499-500)
Referred to the Subcommittee on Health and Environment.
Referred to the Subcommittee on Health.
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