Personalize Your Care Act 2.0
This bill amends title XVIII (Medicare) of the Social Security Act to establish several new programs and requirements related to end-of-life care and advance care planning.
The bill establishes a demonstration program to test the use of advanced illness management and early use of palliative care under Medicare.
The Department of Health and Human Services (HHS) must make grants to eligible entities for the purpose of developing, expanding, and enhancing programs for orders for life-sustaining treatment.
The Centers for Medicare & Medicaid Services (CMS) shall adopt standards for electronic health records with respect to providing one-click access to specified advance care planning documentation.
Under Medicare, an advance directive shall be portable across state lines and may be presumed valid regardless of where it was executed. In the absence of a validly executed advance directive, any authentic expression of a person's wishes with regard to health care shall be honored.
The Government Accountability Office must study and report on the portability, electronic storage, use, and barriers to use of advance directives.
The bill applies specified quality measures to end-of-life care under Medicare.
CMS must report annually on specified information related to Medicare decedents.
HHS shall award grants to increase public awareness of advance care planning. In addition, HHS shall award grants to eligible entities for the development and implementation of training and education programs related to advance care planning, hospice care, and palliative care.
HHS must establish an advisory committee on advance care planning.
[Congressional Bills 114th Congress]
[From the U.S. Government Publishing Office]
[H.R. 5555 Introduced in House (IH)]
<DOC>
114th CONGRESS
2d Session
H. R. 5555
To amend titles XVIII and XIX of the Social Security Act to improve
end-of-life care and advanced illness management.
_______________________________________________________________________
IN THE HOUSE OF REPRESENTATIVES
June 22, 2016
Mr. Blumenauer (for himself and Mr. Roe of Tennessee) introduced the
following bill; which was referred to the Committee on Energy and
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 improve
end-of-life care and advanced illness management.
Be it enacted by the Senate and House of Representatives of the
United States of America in Congress assembled,
SECTION 1. SHORT TITLE; FINDINGS; TABLE OF CONTENTS.
(a) Short Title.--This Act may be cited as the ``Personalize Your
Care Act 2.0''.
(b) Findings.--Congress finds the following:
(1) All individuals should be afforded the opportunity to
fully participate in decisions related to their health care.
(2) Care near the end of life should be person- and family-
oriented and evidence-based.
(3) To ensure high-quality, person-centered care near the
end of life, care must align with an individual's goals,
values, and stated preferences.
(4) Advance care planning plays a valuable role in
achieving quality care by informing providers and family
members of an individual's treatment preferences.
(5) All clinicians who care for people with advanced
serious illness should demonstrate competence in basic advance
care planning and palliative care, including communication
skills, inter-professional collaboration, and symptom
management.
(6) More should be done to establish specific policies and
programs to assist people with sensory, mental, and other
disabilities in order to maximize the degree to which they are
active participants in the decisions related to their health
care, including training health care providers how to
communicate with people with developmental, psychiatric,
speech, and sensory disabilities.
(7) Including completed advance care planning documents
within a patient's electronic health record can increase the
likelihood these documents are kept current and available at
the right place at the right time.
(8) A decade of research has demonstrated that physician
orders for life-sustaining treatment effectively convey patient
preferences and guide medical personnel toward medical
treatment aligned with patient wishes.
(9) Patients, caregivers, families, and health
professionals would benefit from an authoritative, validated
list of core components to the delivery high-quality end-of-
life care.
(10) Palliative care, hospice, and various care models that
integrate health care and supportive services provide high-
quality end-of-life care and reduce the use of avoidable
hospital- and institution-based services that the patient does
not want.
(c) Table of Contents.--The table of contents of this Act is as
follows:
Sec. 1. Short title; findings; table of contents.
Sec. 2. Advanced illness management and choices care model
demonstration program.
Sec. 3. Grants for programs for orders for life-sustaining treatment
and similar provider or medical orders.
Sec. 4. Advance care planning standards for electronic health records.
Sec. 5. Portability of advance directives.
Sec. 6. Application of quality measures under Medicare relating to end-
of-life care.
Sec. 7. Annual report on Medicare decedents.
Sec. 8. Grants to increase public awareness of advance care planning.
Sec. 9. Advance care planning and palliative care education and
training.
Sec. 10. Advance Care Planning Advisory Council.
SEC. 2. ADVANCED ILLNESS MANAGEMENT AND CHOICES CARE MODEL
DEMONSTRATION PROGRAM.
(a) In General.--The Secretary of Health and Human Services (in
this section referred to as the ``Secretary'') shall establish a 3-year
demonstration program (in this section referred to as the
``demonstration program'') to test the use of advanced illness
management and early use of palliative care under the Medicare program.
The Secretary may extend the program to a duration of 4 or 5 years, as
determined necessary by the Secretary in coordination with the Centers
for Medicare and Medicaid Innovation.
(b) Demonstration Program Design.--Under the demonstration program
the Secretary shall establish a capitated payment for the payment of
advanced illness management services and the early use of palliative
care consistent with the following:
(1) The services and care are furnished to individuals
who--
(A) reside at home or in an institutional setting;
(B) have a documented medical prognosis that the
individual's life expectancy is 24 months or less; and
(C) have the need for assistance with two or more
activities of daily living or meet such other criteria
as the Secretary may specify.
(2) The services and care are furnished concurrently with
the receipt of services related to the treatment of the
individual's condition with respect to which a diagnosis of
terminal illness has been made.
(3) The services and care include at least hospice care (as
defined in section 1861(dd)(1) of the Social Security Act), a
functional assessment of the individual and of the family
caregiver (as appropriate), in-home services and supports, 24-
hour, 7-day-a-week emergency supports, care coordination and
communication across settings and providers, and such other
palliative care services as the Secretary deems necessary.
(4) The services and care are furnished by an
interdisciplinary team that includes primary care providers,
palliative medicine specialists, palliative nurses, social
workers, chaplains, pharmacists, dieticians, physical
therapists, occupational therapists, psychotherapists, and such
others as the Secretary deems necessary and appropriate.
(c) Timely Implementation.--The Secretary of Health and Human
Services shall implement a capitated payment model for the payment of
advanced illness management services under subsection (a) not later
than 2 years after the date of the enactment of this Act.
SEC. 3. GRANTS FOR PROGRAMS FOR ORDERS FOR LIFE-SUSTAINING TREATMENT
AND SIMILAR PROVIDER OR MEDICAL ORDERS.
(a) In General.--The Secretary of Health and Human Services shall
make grants to eligible entities for the purpose of developing,
expanding, and enhancing programs for orders for life-sustaining
treatment (as defined in subsection (c)(2)).
(b) Authorized Activities.--Activities funded through a grant under
this section for an area may include--
(1) developing such a program for the area that includes
hospitals, home care, hospice, long-term care, community and
assisted living residences, skilled nursing facilities, and
emergency medical services within a State;
(2) expanding an existing program for orders regarding
life-sustaining treatment to serve more patients or enhance the
quality of services, including educational services for
patients and patients' families, training of health care
professionals, or establishing an orders for life-sustaining
treatment registry; and
(3) technical assistance and professional training.
(c) Definitions.--In this section:
(1) The term ``eligible entity'' includes--
(A) an academic medical center, a medical school, a
State health department, a State medical association, a
multistate task force, a hospital, or a health system
capable of administering a program for physician orders
regarding life-sustaining treatment for a State; or
(B) any other health care agency or entity as the
Secretary determines appropriate.
(2) The term ``program for orders for life-sustaining
treatment'' means a program that, regardless of its name--
(A) implements a clinical process designed to
facilitate shared, informed medical decisionmaking and
communication between health care professionals and
patients with serious, progressive illness or frailty
and results in a set of medical orders that are
substantially consistent with the national standard and
that--
(i) are portable and honored across care
settings; and
(ii) address key medical decisions
consistent with the patient's goals of care;
and
(B) is guided by a coalition of stakeholders, such
as patient advocacy groups and representatives from
across the continuum of health care services,
disability rights advocates, senior advocates,
emergency medical services, long-term care, medical
associations, hospitals, home health, hospice, nursing
associations, the State agency responsible for senior
and disability services, faith-based groups, and the
State department of health.
(3) The term ``Secretary'' means the Secretary of Health
and Human Services.
(d) Authorization of Appropriations.--To carry out this section,
there are authorized to be appropriated $35,000,000 for the 5-fiscal-
year period beginning with fiscal year 2017, to remain available until
expended.
SEC. 4. ADVANCE CARE PLANNING STANDARDS FOR ELECTRONIC HEALTH RECORDS.
(a) In General.--Notwithstanding section 3004(b)(3) of the Public
Health Service Act (42 U.S.C. 300jj-14(b)(3)), not later than 4 years
after the date of the enactment of this Act, the Secretary of Health
and Human Services shall adopt, by rule, standards for a qualified
electronic health record (as defined in section 3000(13) of such Act
(42 U.S.C. 300jj(13)), with respect to organizing patient
communications with health care providers about care goals and to
provide one-click access to the following:
(1) The patient's current advance directive (as defined in
section 1866(f)(3) of the Social Security Act (42 U.S.C.
1395cc(f)(3)), as applicable.
(2) The patient's current order for life-sustaining
treatment (described in section 3(c)(2)(A)), as applicable.
(3) Documentation of advance care planning discussion
between the patient and the provider.
(b) Treatment of Standards.--A standard adopted under subsection
(a) shall be treated as a standard adopted under section 3004 of the
Public Health Service Act (42 U.S.C. 300jj-14) for purposes of
certifying qualified electronic health records pursuant to section
3001(c)(5) of such Act (42 U.S.C. 300jj-11(c)(5)).
SEC. 5. PORTABILITY OF ADVANCE DIRECTIVES.
(a) In General.--Section 1866(f) of the Social Security Act (42
U.S.C. 1395cc(f)) is amended by adding at the end the following new
paragraph:
``(5)(A) An advance directive validly executed outside the State in
which such directive is presented must be given effect by a provider of
services or organization to the same extent as an advance directive
validly executed under the law of the State in which it is presented.
``(B) In the absence of knowledge to the contrary, a physician or
other health care provider or organization may presume that a written
advance health care directive or similar instrument, regardless of
where executed, is valid.
``(C) In the absence of a validly executed advance directive, any
authentic expression of a person's wishes with respect to health care
shall be honored.
``(D) The provisions of this paragraph shall preempt any State law
on advance directive portability to the extent such law is inconsistent
with such provisions. Nothing in the paragraph shall be construed to
authorize the administration of health care treatment otherwise
prohibited by the laws of the State in which the directive is
presented.''.
(b) GAO Study on Health Care Decisionmaking Laws and Barriers to
the Use of Advance Directives.--
(1) Study.--The Comptroller General of the United States
shall conduct a study that examines the use, portability, and
electronic storage of advance directives and that identifies
barriers towards adopting, using, and following advance
directives in the clinical setting. Such examination shall
include issues that remain unresolved after the Stage 3
Meaningful Use final rule, including barriers and solutions to
finding and accessing advance care planning documents, best
practices for alerting eligible providers to the presence of an
advance care plan, and best practices for transmitting advance
care plans across sites of care.
(2) Report.--Not later than 1 year after the date of the
enactment of this Act, the Comptroller General shall submit to
Congress a report on the study conducted under paragraph (1)
and shall include in the report such recommendations regarding
improving advance health care planning as the Comptroller
General deems appropriate.
SEC. 6. APPLICATION OF QUALITY MEASURES UNDER MEDICARE RELATING TO END-
OF-LIFE CARE.
(a) Incorporating End-of-Life Care Subdomains Within Quality
Domains Under Medicare Physician Fee Schedule.--Section 1848(s)(1) of
the Social Security Act (42 U.S.C. 1395w-4(s)(1)) is amended by adding
at the end the following new subparagraph:
``(G) End-of-life subdomains relating to quality
domains.--Within one or more appropriate quality
domains, the Secretary shall establish subdomains
relating to end-of-life care, including subdomains
relating to each of the following:
``(i) The process of eliciting and
documenting goals, preferences, and values of
the patient (and, where relevant and
appropriate, family caregiver) regarding end-
of-life care from the patient or from a legally
authorized representative, including the
articulation of goals that accurately reflect
how the patient wants to live.
``(ii) The effectiveness, patient-
centeredness (and, where relevant, family
caregiver-centeredness), and accuracy of end-
of-life care plans, including documentation of
individual goals, preferences, and values.
``(iii) Agreement and consistency with
respect to end-of-life care among--
``(I) patient's goals, values, and
preferences;
``(II) any documented care plan;
and
``(III) the care delivered.''.
(b) Incorporating Quality Measures on End-of-Life Care for Post-
Acute Care (PAC).--Section 1899B of the Social Security Act (42 U.S.C.
1395lll) is amended--
(1) in subsection (a)(2)(E)(i)--
(A) by striking ``and'' at the end of subclause
(IV);
(B) by striking the period at the end of subclause
(V) and inserting ``; and''; and
(C) by adding at the end the following new
subclause:
``(VI) with respect to the domain
described in subsection (c)(1)(F)
(relating to end-of-life care)--
``(aa) for PAC providers
described in clauses (ii),
(iii), and (iv) of paragraph
(2)(A), October 1, 2018; and
``(bb) for PAC providers
described in clauses (i) of
such paragraph, January 1,
2019.''; and
(2) in subsection (c)(1), by adding at the end the
following new subparagraph:
``(F) The effectiveness, patient-centeredness (and,
where relevant, family caregiver-centeredness), and
accuracy of end-of-life care plans and communications
relating to such plans, including--
``(i) documentation of a patient's goals,
preferences, and values; and
``(ii) agreement and consistency with
respect to end-of-life care among--
``(I) patient's goals, values, and
preferences;
``(II) any documented care plan;
and
``(III) the care delivered.''.
SEC. 7. ANNUAL REPORT ON MEDICARE DECEDENTS.
The Secretary of Health and Human Services shall issue for each
fiscal year (beginning no later than fiscal year 2018) an annual report
that analyzes the circumstances of Medicare beneficiaries who died
during the fiscal year covered by such report. Such analysis shall
include at least the following with respect to such decedents:
(1) Information on the care or payor settings (such as
under part A or part C of Medicare) at the time of death.
(2) Information on the demographic characteristics of such
decedents.
(3) Information on the geographic distribution of such
decedents.
(4) An evaluation of the Medicare claims data for such
decedents for services furnished in the last year of life,
including an analysis of the setting of care for decedents who
had more than one chronic illness at the time of death.
(5) Such other information as the Secretary deems
appropriate.
SEC. 8. GRANTS TO INCREASE PUBLIC AWARENESS OF ADVANCE CARE PLANNING.
(a) In General.--The Secretary of Health and Human Services shall
award grants to increase public awareness of advance care planning.
Such grants shall be awarded under such terms and conditions as the
Secretary shall specify.
(b) Types of Grants.--Grants under this section may provide for the
development of--
(1) decision support tools and instructional materials for
individuals, family caregivers, and health care providers that
include the importance of planning for treatment decisions,
discussing values and goals related to catastrophic injury or
illness, and completing an advance directive; and
(2) materials for individuals that presents the importance
of articulating goals of care, understanding disease diagnosis
and prognosis, evaluating treatment options, and developing a
plan of care, and documenting the treatment plan.
(c) Authorization of Appropriations.--There are authorized to be
appropriated to carry out this section for the 5-fiscal-year period
beginning with fiscal year 2017 $20,000,000, to remain available until
expended.
SEC. 9. ADVANCE CARE PLANNING AND PALLIATIVE CARE EDUCATION AND
TRAINING.
(a) In General.--The Secretary of Health and Human Services shall
award grants to eligible entities to develop and implement programs and
initiatives to train and educate individuals to provide advance care
planning, advance illness care, hospice care, and palliative care in
hospital, hospice, home, community, and long-term care settings.
(b) Eligible Entities.--For purposes of this section, eligible
entities may be a medical school, a nursing school, a health care
system, non-profit organization, or other entity the Secretary deems
appropriate.
(c) Use of Funds.--Funding under grants awarded under this section
shall be used--
(1) to provide training and continuing education to
individuals who will provide advance care planning services or
palliative care in the hospital, hospice, home, community, and
long-term care settings; and
(2) to develop curricula or teaching materials related to
advance care planning or palliative care in such settings.
(d) Authorization of Appropriations.--There are authorized to be
appropriated to carry out this section for the 5-fiscal-year period
beginning with fiscal year 2017 $20,000,000, to remain available until
expended.
SEC. 10. ADVANCE CARE PLANNING ADVISORY COUNCIL.
(a) Establishment.--Not later than 180 days after the date of the
enactment of this Act, the Secretary of Health and Human Services (in
this section referred to as the ``Secretary'') shall establish within
the Office of the Secretary an advisory committee to be known as the
Advance Care Planning Advisory Council (in this section referred to as
the ``Council'').
(b) Duties.--
(1) Mission.--The Council shall advise the Secretary
regarding the compilation, development, and dissemination of
resources for individuals facing advanced and terminal illness.
(2) Responsibilities.--Responsibilities of the council
include the following:
(A) Ensuring that resources provided contain non-
biased information about the range of options available
to individuals with advance and terminal illness,
including information about conventional, curative
treatments, palliative care, and hospice care.
(B) Developing strategies for increasing public
understanding about advanced illness and the important
role advance care planning can play in documenting an
individual's wishes for medical care for loved ones in
the event that individual cannot communicate the
individual's his or her wishes.
(C) Compiling information for dissemination
regarding existing advance care planning models
including POLST, MOLST, advance directives, and
healthcare proxies.
(D) Promoting interagency coordination and
minimizing overlap regarding advance care planning,
including opportunities to coordinate efforts between
the Federal agencies and external stakeholders.
(E) Identifying and evaluating cross-cutting issues
such as perinatal end-of-life care and advance care
planning access issues.
(c) Membership.--
(1) In general.--The Council shall be composed of up to 15
members appointed by the Secretary from among qualified
individuals who are not officers or employees of the Federal
Government.
(2) Groups.--The members of the Council shall include the
following:
(A) At least 3 members with clinical training and
an expertise in advanced illness or end-of-life care.
(B) At least 3 members from patient and family
advocacy groups.
(C) At least 3 members from religious or spiritual
organizations.
(D) Other members from interested stakeholder
groups with a proven expertise in chronic, advanced,
and end-of-life care.
(d) Applicability of FACA.--The Council shall be treated as an
advisory committee subject to the Federal Advisory Committee Act (5
U.S.C. App.).
<all>
Introduced in House
Introduced in House
Sponsor introductory remarks on measure. (CR E974-975)
Referred to the Committee on Energy and 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 Energy and 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 Energy and 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 Subcommittee on Health.
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