I
105TH CONGRESS
1ST SESSION
H. R. 2999
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
NOVEMBER 9, 1997
Mr. LEVIN 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 ad-
vance 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 Representa-
tives of the United States of America in Congress assembled,
SECTION 1. SHORT TITLE.
This Act may be cited as the ‘‘Advance Planning and
Compassionate Care Act of 1997’’.
SEC. 2. EXPANSION OF ADVANCE DIRECTIVES.
(a) MEDICARE.—Section 1866(f) of the Social Secu-
rity Act (42 U.S.C. 1395cc(f)) (as amended by section
4641 of the Balanced Budget Act of 1997 (Public Law
105–33; 111 Stat. 487)) 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 semi-
colon;
(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 oppor-
tunity to discuss issues relating to the information
provided to that individual pursuant to subpara-
graph (A) with an appropriately trained profes-
sional.’’; 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 pre-
paid 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 with-
drawal 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 port-
ability, more deference to a patient’s wishes, or more lati-
tude in determining a patient’s wishes.’’.
(b) MEDICAID.—Section 1902(w) of the Social Secu-
rity 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 promi-
nent part of the individual’s current medi-
cal 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 oppor-
tunity to discuss issues relating to the information
provided to that individual pursuant to subpara-
graph (A) with an appropriately trained profes-
sional.’’; 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 with-
drawal 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 port-
ability, more deference to a patient’s wishes, or more lati-
tude 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, re-
newed, 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 speci-
fies.
(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 be-
fore the first day of the first calendar quarter begin-
ning 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 consid-
ered to be a separate regular session of the State
legislature.
SEC. 3. 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 im-
plementation of the amendments made by section 2 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 conclu-
sions of the Secretary regarding the study conducted pur-
suant to subsection (a), together with the Secretary’s rec-
ommendations for such legislation and administrative ac-
tions as the Secretary considers appropriate.
SEC. 4. 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 uni-
form policy on advance directives for individuals re-
ceiving 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 an-
other;
(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 individ-
ual’s advance directive;
(F) conditions under which an advance di-
rective is operative;
(G) revocation of an advance directive by
an individual;
(H) the criteria for determining that an in-
dividual is in terminal status; and
(I) surrogate decision making regarding
end of life care.
(b) REPORT TO CONGRESS.—Not later than 1 year
after the date of enactment of this Act, the Secretary of
Health and Human Services shall submit a report to Con-
gress 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. 5. DEVELOPMENT OF STANDARDS TO ASSESS END–OF–
LIFE CARE.
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 stand-
ards 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.
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 BENE-
FICIARIES.
(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 bene-
fits 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 Admin-
istration, shall conduct ongoing evaluations of inno-
vative 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 utiliza-
tion, 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 require-
ments and enrollment procedures for the pro-
gram.
(D) A detailed description of the services
provided to medicare beneficiaries served by the
program and the utilization rates for such serv-
ices.
(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 of-
fering medicare beneficiaries a choice of services
and how the program responds to the pref-
erences 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 pro-
gram and with the replication of such program
in other settings.
(J) Identification of any changes to regula-
tions, 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 STAND-
ARDS.—An evaluation conducted under this sub-
section and subsection (c)(4) shall use the outcome
standards and measures required to be developed
under section 5 as soon as those standards and
measures are available.
(c) DEMONSTRATION PROJECTS.—
(1) AUTHORITY.—The Secretary, through the
Administrator of the Health Care Financing Admin-
istration, shall conduct demonstration projects to de-
velop new and innovative approaches to providing
end-of-life care to medicare beneficiaries who are se-
riously ill or who suffer from a medical condition
that is likely to be fatal.
(2) APPLICATION.—Any entity seeking to con-
duct 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 sub-
section, the Secretary shall select entities that
will allow for demonstration projects to be con-
ducted 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, pre-
ferred provider organizations, health main-
tenance organizations, hospice care, home
care services, long-term care, and inte-
grated delivery systems.
(B) PREFERENCES.—The Secretary shall
give preference to applications for demonstra-
tion projects that—
(i) will serve medicare beneficiaries
who are dying of illnesses that are most
prevalent under the medicare program, in-
cluding cancer, heart failure, chronic ob-
structive respiratory disease, dementia,
stroke, and progressive multifactorial frail-
ty associated with advanced age; and
(ii) appear capable of sustained serv-
ice and broad replication at a reasonable
cost within commonly available organiza-
tional 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 fol-
lowing:
(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 pro-
gram.
(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 effec-
tively 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 there-
after, the Secretary shall submit to Congress a re-
port on the quality of end-of-life care under the med-
icare program, together with any suggestions for leg-
islation to improve the quality of such care under
that program.
(2) SUMMARY OF RECENT STUDIES.—A report
submitted under this subsection shall include a sum-
mary of any recent studies and advice from experts
in the health care field regarding the ethical, cul-
tural, and legal issues that may arise when attempt-
ing to improve the health care system to meet the
needs of individuals with serious and eventually fatal
illnesses.
(3) CONTINUATION OR REPLICATION OF DEM-
ONSTRATION
PROJECTS.—Beginning 3 years after
the date of enactment of this Act, the report re-
quired under this subsection shall include rec-
ommendations 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), con-
ducting 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 appro-
priated 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)) (as amended by sec-
tion 4557 of the Balanced Budget Act (Public Law 105–
33; 111 Stat. 463)) is amended—
(1) by striking ‘‘and’’ at the end of subpara-
graph (S);
(2) in subparagraph (T), by striking the period
at the end and inserting ‘‘; and’’; and
(3) by inserting after subparagraph (T) the fol-
lowing:
‘‘(U) self-administered drugs which may be dis-
pensed only upon prescription and which are pre-
scribed 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 June 1, 1998.
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