110th CONGRESS
1st Session
S. 464
To amend titles XVIII and XIX of the Social Security Act to improve
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 SENATE OF THE UNITED STATES
January 31, 2007
Mr. ROCKEFELLER (for himself, Ms. COLLINS, and Mr. NELSON of Florida) 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 to improve
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 2007'.
(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. Study and report by the Secretary of Health and Human Services
regarding the establishment and implementation of a national uniform policy
on advance directives.
Sec. 4. Improvement of policies related to the use of advance directives.
Sec. 5. National information hotline for end-of-life decisionmaking and
hospice care.
Sec. 6. Demonstration project for innovative and new approaches to end-of-life
care for Medicare, Medicaid, and SCHIP beneficiaries.
Sec. 7. Establishment of End-of-Life Care Advisory Board.
SEC. 2. DEVELOPMENT OF STANDARDS TO ASSESS END-OF-LIFE CARE.
(a) In General- The Secretary of Health and Human Services, in consultation
with the Administrator of the Centers for Medicare & Medicaid Services,
the Director of the National Institutes of Health, the Administrator of
the Agency for Health Care Policy and Research, and the End-of-Life Care
Advisory Board (established under section 7), shall develop outcome standards
and measures to--
(1) evaluate the performance of health care programs and projects that
provide end-of-life care to individuals, including the quality of the
care provided by such programs and projects; and
(2) assess the access to, and utilization of, such programs and projects,
including differences in such access and utilization in rural and urban
areas and for minority populations.
(b) Report to Congress- Not later than 2 years after the date of enactment
of this Act, the Secretary of Health and Human Services shall submit to
Congress a report on the outcome standards and measures developed under
subsection (a), together with recommendations for such legislation and administrative
actions as the Secretary considers appropriate.
SEC. 3. STUDY AND REPORT BY THE SECRETARY OF HEALTH AND HUMAN SERVICES
REGARDING THE ESTABLISHMENT AND IMPLEMENTATION OF A NATIONAL UNIFORM POLICY
ON ADVANCE DIRECTIVES.
(1) IN GENERAL- The Secretary of Health and Human Services shall conduct
a thorough study of all matters relating to the establishment and implementation
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 under paragraph (1) shall include issues concerning--
(A) family satisfaction that a patient's wishes, as stated in the patient's
advance directive, were carried out;
(B) the portability of advance directives, including cases involving
the transfer of an individual from 1 health care setting to another;
(C) immunity from civil liability and criminal responsibility for health
care providers that follow the instructions in an individual's advance
directive that was validly executed in, and consistent with the laws
of, the State in which it was executed;
(D) conditions under which an advance directive is operative;
(E) revocation of an advance directive by an individual;
(F) the criteria used by States for determining that an individual has
a terminal condition;
(G) surrogate decisionmaking regarding end-of-life care;
(H) the provision of adequate palliative care (as defined in paragraph
(3)), including pain management; and
(I) adequate and timely referrals to hospice care programs.
(3) PALLIATIVE CARE- For purposes of paragraph (2)(H), the term `palliative
care' means interdisciplinary care for individuals with a life-threatening
illness or injury relating to pain and symptom management and psychological,
social, and spiritual needs and that seeks to improve the quality of life
for the individual and the individual's family.
(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 to
Congress a report on the study conducted under subsection (a), together
with recommendations for such legislation and administrative actions as
the Secretary considers appropriate.
(c) Consultation- In conducting the study and developing the report under
this section, the Secretary of Health and Human Services shall consult with
the End-of-Life Care Advisory Board (established under section 7), the Uniform
Law Commissioners, and other interested parties.
SEC. 4. IMPROVEMENT OF POLICIES RELATED TO THE USE OF ADVANCE DIRECTIVES.
(a) Medicare- Section 1866(f) of the Social Security Act (42 U.S.C. 1395cc(f))
is amended--
(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 at the end;
(B) in subparagraph (D), by striking `and' after the semicolon at the
end;
(C) in subparagraph (E), by striking the period at the end and inserting
`; and'; and
(D) by inserting after subparagraph (E) the following new subparagraph:
`(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.';
(2) in paragraph (3), by striking `a written' and inserting `an'; and
(3) by adding at the end the following new paragraph:
`(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
of services, a Medicare Advantage organization, 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)(i) The definition of an advanced directive shall also include actual
knowledge of instructions made while an individual was able to express the
wishes of such individual with regard to health care.
`(ii) For purposes of clause (i), the term `actual knowledge' means the
possession of information of an individual's wishes communicated to the
health care provider orally or in writing by the individual, the individual's
medical power of attorney representative, the individual's health care surrogate,
or other individuals resulting in the health care provider's personal cognizance
of these wishes. Other forms of imputed knowledge are not actual knowledge.
`(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--
(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 at the end;
(B) in subparagraph (D), by striking `and' after the semicolon at the
end;
(C) in subparagraph (E), by striking the period at the end and inserting
`; and'; and
(D) by inserting after subparagraph (E) the following new subparagraph:
`(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.';
(2) in paragraph (4), by striking `a written' and inserting `an'; and
(3) by adding at the end the following paragraph:
`(6)(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)(i) The definition of an advanced directive shall also include actual
knowledge of instructions made while an individual was able to express the
wishes of such individual with regard to health care.
`(ii) For purposes of clause (i), the term `actual knowledge' means the
possession of information of an individual's wishes communicated to the
health care provider orally or in writing by the individual, the individual's
medical power of attorney representative, the individual's health care surrogate,
or other individuals resulting in the health care provider's personal cognizance
of these wishes. Other forms of imputed knowledge are not actual knowledge.
`(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) Study and Report Regarding Implementation-
(1) STUDY- The Secretary of Health and Human Services shall conduct a
study regarding the implementation of the amendments made by subsections
(a) and (b).
(2) REPORT- Not later than 18 months after the date of enactment of this
Act, the Secretary of Health and Human Services shall submit to Congress
a report on the study conducted under paragraph (1), together with recommendations
for such legislation and administrative actions as the Secretary considers
appropriate.
(1) IN GENERAL- Subject to paragraph (2), the amendments made by subsections
(a) and (b) shall apply to provider agreements and contracts entered into,
renewed, or extended under title XVIII of the Social Security Act (42
U.S.C. 1395 et seq.), and to State plans under title XIX of such Act (42
U.S.C. 1396 et seq.), on or after such date as the Secretary of Health
and Human Services specifies, but in no case may such date be later than
1 year after the date of enactment of this Act.
(2) EXTENSION OF EFFECTIVE DATE FOR STATE LAW AMENDMENT- In the case of
a State plan under title XIX of the Social Security Act (42 U.S.C. 1396
et seq.) 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 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. 5. NATIONAL INFORMATION HOTLINE FOR END-OF-LIFE DECISIONMAKING AND
HOSPICE CARE.
The Secretary of Health and Human Services, acting through the Administrator
of the Centers for Medicare & Medicaid Services, shall operate directly,
or by grant, contract, or interagency agreement, out of funds otherwise
appropriated to the Secretary, a clearinghouse and a 24-hour toll-free telephone
hotline in order 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)), as amended by section 4(a)), end-of-life decisionmaking,
and available end-of-life and hospice care services. In carrying out the
preceding sentence, the Administrator may designate an existing clearinghouse
and 24-hour toll-free telephone hotline or, if no such entity is appropriate,
may establish a new clearinghouse and a 24-hour toll-free telephone hotline.
SEC. 6. DEMONSTRATION PROJECT FOR INNOVATIVE AND NEW APPROACHES TO END-OF-LIFE
CARE FOR MEDICARE, MEDICAID, AND SCHIP BENEFICIARIES.
(1) IN GENERAL- The Secretary, acting through the Administrator of the
Centers for Medicare & Medicaid Services, shall conduct a demonstration
project under which the Secretary contracts with entities operating programs
in order to develop new and innovative approaches to providing end-of-life
care to Medicare beneficiaries, Medicaid beneficiaries, and SCHIP beneficiaries.
(2) APPLICATION- Any entity seeking to participate in the demonstration
project shall submit to the Secretary an application in such form and
manner as the Secretary may require.
(3) DURATION- The authority of the Secretary to conduct the demonstration
project shall terminate at the end of the 5-year period beginning on the
date the Secretary implements the demonstration project.
(1) IN GENERAL- Subject to paragraphs (2) and (3), in selecting entities
to participate in the demonstration project, the Secretary shall select
entities that will allow for programs to be conducted in a variety of
States, in an array of care settings, and that reflect--
(A) a balance between urban and rural settings;
(B) cultural diversity; and
(C) 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, pediatric care, and
integrated delivery systems.
(2) PREFERENCES- The Secretary shall give preference to entities operating
programs that--
(A) will serve Medicare beneficiaries, Medicaid beneficiaries, or SCHIP
beneficiaries who are dying of illnesses that are most prevalent under
the Medicare program, the Medicaid program, or SCHIP, respectively;
and
(B) appear capable of sustained service and broad replication at a reasonable
cost within commonly available organizational structures.
(3) SELECTION OF PROGRAM THAT PROVIDES PEDIATRIC END-OF-LIFE CARE- The
Secretary shall ensure that at least 1 of the entities selected to participate
in the demonstration project operates a program that provides pediatric
end-of-life care.
(c) Evaluation of Programs-
(1) IN GENERAL- Each program operated by an entity under the demonstration
project shall be evaluated at such regular intervals as the Secretary
determines are appropriate.
(2) USE OF PRIVATE ENTITIES TO CONDUCT EVALUATIONS- The Secretary, in
consultation with the End-of-Life Care Advisory Board (established under
section 7), shall contract with 1 or more private entities to coordinate
and conduct the evaluations under paragraph (1). Such a contract may not
be awarded to an entity selected to participate in the demonstration project.
(3) REQUIREMENTS FOR EVALUATIONS-
(A) USE OF OUTCOME MEASURES AND STANDARDS- In coordinating and conducting
an evaluation of a program conducted under the demonstration project,
an entity shall use the outcome standards and measures required to be
developed under section 2 as soon as those standards and measures are
available.
(B) ELEMENTS OF EVALUATION- In addition to the use of the outcome standards
and measures under subparagraph (A), an evaluation of a program conducted
under the demonstration project shall include the following:
(i) A comparison of the quality of care provided by, and of the outcomes
for Medicare beneficiaries, Medicaid beneficiaries, and SCHIP beneficiaries,
and the families of such beneficiaries enrolled in, the program being
evaluated to the quality of care and outcomes for such individuals
that would have resulted if care had been provided under existing
delivery systems.
(ii) An analysis of how ongoing measures of quality and accountability
for improvement and excellence could be incorporated into the program
being evaluated.
(iii) A comparison of the costs of the care provided to Medicare beneficiaries,
Medicaid beneficiaries, and SCHIP beneficiaries under the program
being evaluated to the costs of such care that would have been incurred
under the Medicare program, the Medicaid program, and SCHIP if such
program had not been conducted.
(iv) An analysis of whether the program being evaluated implements
practices or procedures that result in improved patient outcomes,
resource utilization, or both.
(I) the population served by the program being evaluated; and
(II) how accurately that population reflects the total number of
Medicare beneficiaries, Medicaid beneficiaries, and SCHIP beneficiaries
residing in the area who are in need of services offered by such
program.
(vi) An analysis of the eligibility requirements and enrollment procedures
for the program being evaluated.
(vii) An analysis of the services provided to beneficiaries enrolled
in the program being evaluated and the utilization rates for such
services.
(viii) An analysis of the structure for the provision of specific
services under the program being evaluated.
(ix) An analysis of the costs of providing specific services under
the program being evaluated.
(x) An analysis of any procedures for offering Medicare beneficiaries,
Medicaid beneficiaries, and SCHIP beneficiaries enrolled in the program
being evaluated a choice of services and how the program responds
to the preferences of such beneficiaries.
(xi) An analysis of the quality of care provided to, and of the outcomes
for, Medicare beneficiaries, Medicaid beneficiaries, and SCHIP beneficiaries,
and the families of such beneficiaries, that are enrolled in the program
being evaluated.
(xii) An analysis of any ethical, cultural, or legal concerns--
(I) regarding the program being evaluated; and
(II) with the replication of such program in other settings.
(xiii) An analysis of any changes to regulations or of any additional
funding that would result in more efficient procedures or improved
outcomes under the program being evaluated.
(d) Waiver Authority- The Secretary may waive compliance with any of the
requirements of titles XI, XVIII, XIX, and XXI of the Social Security Act
(42 U.S.C. 1301 et seq.; 1395 et seq.; 1396 et seq.; 1397aa et seq.) which,
if applied, would prevent the demonstration project carried out under this
section from effectively achieving the purpose of such project.
(1) ANNUAL REPORTS BY SECRETARY-
(A) 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 demonstration project and on the quality of end-of-life
care under the Medicare program, the Medicaid program, and SCHIP, together
with recommendations for such legislation and administrative actions
as the Secretary considers appropriate.
(B) SUMMARY OF RECENT STUDIES- A report submitted under subparagraph
(A) 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 terminal
conditions.
(C) CONTINUATION OR REPLICATION OF DEMONSTRATION PROJECTS- The first
report submitted under subparagraph (A) after the 3-year anniversary
of the date the Secretary implements the demonstration project shall
include recommendations regarding whether such demonstration project
should be continued beyond the period described in subsection (a)(3)
and whether broad replication of any of the programs conducted under
the demonstration project should be initiated.
(2) REPORT BY END-OF-LIFE CARE ADVISORY BOARD ON DEMONSTRATION PROJECT-
(A) IN GENERAL- Not later than 2 years after the conclusion of the demonstration
project, the End-of-Life Advisory Board shall submit a report to the
Secretary and Congress on such project.
(B) CONTENTS- The report submitted under subparagraph (A) shall contain--
(i) an evaluation of the effectiveness of the demonstration project;
and
(ii) recommendations for such legislation and administrative actions
as the Board considers appropriate.
(f) Funding- There are appropriated such sums as are necessary for conducting
the demonstration project and for preparing and submitting the reports required
under subsection (e)(1).
(g) Definitions- In this section:
(1) DEMONSTRATION PROJECT- The term `demonstration project' means the
demonstration project conducted under this section.
(2) MEDICAID BENEFICIARIES- The term `Medicaid beneficiaries' means individuals
who are enrolled in the State Medicaid program.
(3) MEDICAID PROGRAM- The term `Medicaid program' means the health care
program under title XIX of the Social Security Act (42 U.S.C. 1395 et
seq.).
(4) MEDICARE BENEFICIARIES- The term `Medicare beneficiaries' means individuals
who are entitled to, or enrolled for, benefits under part A or enrolled
for benefits under part B of the Medicare program.
(5) 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.).
(6) SCHIP- The term `SCHIP' means the State children's health insurance
program under title XXI of the Social Security Act (42 U.S.C. 1397aa et
seq.).
(7) SCHIP BENEFICIARY- The term `SCHIP beneficiary' means an individual
who is enrolled in SCHIP.
(8) SECRETARY- The term `Secretary' means the Secretary of Health and
Human Services.
SEC. 7. ESTABLISHMENT OF END-OF-LIFE CARE ADVISORY BOARD.
(a) Establishment- There is established within the Department of Health
and Human Services an End-of-Life Care Advisory Board (in this section referred
to as the `Board').
(b) Structure and Membership-
(1) IN GENERAL- The Board shall be composed of 15 members who shall be
appointed by the Secretary of Health and Human Services (in this section
referred to as the `Secretary').
(2) REQUIRED REPRESENTATION- The Secretary shall ensure that the following
groups, organizations, and associations are represented in the membership
of the Board:
(A) An end-of-life consumer advocacy organization.
(B) A senior citizen advocacy organization.
(C) A physician-based hospice or palliative care organization.
(D) A nurse-based hospice or palliative care organization.
(E) A hospice or palliative care provider organization.
(F) A hospice or palliative care representative that serves the veterans
population.
(G) A physician-based medical association.
(H) A physician-based pediatric medical association.
(I) A home health-based nurses association.
(J) A hospital-based or health system-based palliative care group.
(K) A children-based or family-based hospice resource group.
(L) A cancer pain management resource group.
(M) A cancer research and policy advocacy group.
(N) An end-of-life care policy advocacy group.
(O) An interdisciplinary end-of-life care academic institution.
(3) ETHNIC DIVERSITY REQUIREMENT- The Secretary shall ensure that the
members of the Board appointed under paragraph (1) represent the ethnic
diversity of the United States.
(4) PROHIBITION- No individual who is a Federal officer or employee may
serve as a member of the Board.
(5) TERMS OF APPOINTMENT- Each member of the Board shall serve for a term
determined appropriate by the Secretary.
(6) CHAIRPERSON- The Secretary shall designate a member of the Board as
chairperson.
(c) Meetings- The Board shall meet at the call of the chairperson but not
less often than every 3 months.
(1) IN GENERAL- The Board shall advise the Secretary on all matters related
to the furnishing of end-of-life care to individuals.
(2) SPECIFIC DUTIES- The specific duties of the Board are as follows:
(A) CONSULTING- The Board shall consult with the Secretary regarding--
(i) the development of the outcome standards and measures under section
2;
(ii) conducting the study and submitting the report under section
3; and
(iii) the selection of private entities to conduct evaluations pursuant
to section 6(c)(2).
(B) REPORT ON DEMONSTRATION PROJECT- The Board shall submit the report
required under section 6(e)(2).
(e) Members To Serve Without Compensation-
(1) IN GENERAL- All members of the Board shall serve on the Board without
compensation for such service.
(2) TRAVEL EXPENSES- The members of the Board shall be allowed travel
expenses, including per diem in lieu of subsistence, at rates authorized
for employees of agencies under subchapter I of chapter 57 of title 5,
United States Code, while away from their homes or regular places of business
in the performance of services for the Board.
(1) IN GENERAL- The chairperson of the Board may, without regard to the
civil service laws and regulations, appoint and terminate an executive
director and such other additional personnel as may be necessary to enable
the Board to perform its duties. The employment of an executive director
shall be subject to confirmation by the Board.
(2) COMPENSATION- The chairperson of the Board may fix the compensation
of the executive director and other personnel without regard to chapter
51 and subchapter III of chapter 53 of title 5, United States Code, relating
to classification of positions and General Schedule pay rates, except
that the rate of pay for the executive director and other personnel may
not exceed the rate payable for level V of the Executive Schedule under
section 5316 of such title.
(3) PERSONNEL AS FEDERAL EMPLOYEES-
(A) IN GENERAL- The executive director and any personnel of the Board
who are employees shall be employees under section 2105 of title 5,
United States Code, for purposes of chapters 63, 81, 83, 84, 85, 87,
89, and 90 of that title.
(B) MEMBERS OF BOARD- Subparagraph (A) shall not be construed to apply
to members of the Board.
(g) Detail of Government Employees- Any Federal Government employee may
be detailed to the Board without additional reimbursement (other than the
employee's regular compensation), and such detail shall be without interruption
or loss of civil service status or privilege.
(h) Procurement of Temporary and Intermittent Services- The chairperson
of the Board may procure temporary and intermittent services under section
3109(b) of title 5, United States Code, at rates for individuals which do
not exceed the daily equivalent of the annual rate of basic pay prescribed
for level V of the Executive Schedule under section 5316 of such title.
(i) Federal Advisory Committee Act- Section 14 of the Federal Advisory Committee
Act (5 U.S.C. App.) shall not apply to the Board.
(j) Termination- The Board shall terminate 90 days after the date on which
the Board submits the report under section 6(e)(2).
(k) Funding- Funding for the operation of the Board shall be from amounts
otherwise appropriated to the Department of Health and Human Services.
END
