113 S1439 IS: Care Planning Act of 2013
U.S. Senate
2013-08-01
text/xml
EN
Pursuant to Title 17 Section 105 of the United States Code, this file is not subject to copyright protection and is in the public domain.
1.Short
title; table of contents
(a)This Act may be cited
as the Care Planning Act of
2013
.
(b)The table of contents of this Act is as follows:
Sec. 1. Short title; table of
contents.
Sec. 2. Findings.
Sec. 3. Improvement of advanced illness planning and
coordination.
Sec. 4. Quality measurement development.
Sec. 5. Inclusion of advance care planning materials in the
Medicare & You handbook.
Sec. 6. Care Planning Advisory Board.
Sec. 7. Improvement of policies related to the use and
portability of advance directives.
Sec. 8. Additional requirements for facilities.
Sec. 9. Grants for increasing public awareness of advance care
planning and advanced illness care.
Sec. 10. HHS study and report on the storage of advance
directives.
Sec. 11. GAO study and report on the provisions of, and
amendments made by, this Act.
Sec. 12. Consultation with the Care Planning Advisory
Board.
Sec. 13. Rule of construction.
2.Congress makes the following
findings:
(1)The population of
the United States is estimated to age rapidly, with the number of people over
the age of 65 set to double to more than 72,000,000, or 1 in 5 Americans, over
the next two decades.
(2)Americans today
are living longer and healthier lives than ever before in the history of the
United States yet are also facing increased incidence of multiple serious
conditions as aging progresses.
(3)Americans with
advanced illness face a complicated and fragmented system of care delivery that
puts them at risk for repeat hospitalizations, adverse drug reactions, and
conflicting medical advice that may be overwhelming to individuals and
families.
(4)The progression
of advanced illness leads to the need for increasingly intensive decision
support, health care services, and support from family caregivers.
(5)The complexity of
care needed by individuals with advanced illness may result in uncoordinated
care, adverse health outcomes, frustration, wasted time, and undue emotional
burdens on individuals and their family caregivers.
(6)Numerous private
sector leaders, including hospitals, health systems, home health agencies,
hospice programs, long-term care providers, employers, and other entities, have
put in place innovative solutions to provide more comprehensive and coordinated
care for Americans living with advanced illness.
(7)Hospice programs,
as one of the longest standing Medicare care coordination benefits that offer a
comprehensive set of services via an interdisciplinary team working to provide
person- and family-centered care to the frailest and most vulnerable
individuals in our communities, can serve as a model for advanced illness care
delivery.
(8)Palliative care
programs that serve patients beginning at diagnosis with advanced illness and
provide care designed to reduce the symptom burden of illness can serve as a
model for interdisciplinary team care planning based on the individual’s goals
of care.
(9)The Government of
the United States, as the Nation’s largest purchaser of health care services,
must learn from these innovators and encourage health care providers to furnish
more supportive and comprehensive advanced illness care to improve the efficacy
and quality of health care delivered for generations of Americans to
come.
(10)Health care
providers who serve individuals with advanced illness face complicated care
systems and legal concerns that may result in over- or under-treatment of
individuals with advanced illness.
(11)Individuals have
the well-established right to accept or reject medical treatment that is
offered, as well as the well-established right to document their preferences
for how treatment decisions should be made if, at some point in the future,
they lose the ability to make health care decisions.
(12)Too often,
individuals with advanced illness do not understand the conditions they are
facing or their treatment options, and they do not receive the information or
support they need to evaluate treatment options in light of their personal
goals and values and to document treatment plans in a manner that allows
providers and facilities to follow their plans.
(13)Providing
quality services and planning support to individuals with advanced illness will
protect and preserve their dignity.
3.Improvement of
advanced illness planning and coordination
(a)Medicare
coverage of planning services
(1)Section
1861(s)(2) of the Social Security Act (42 U.S.C. 1395x(s)(2)) is
amended—
(A)in subparagraph
(EE), by striking and
at the end;
(B)in subparagraph
(FF), by inserting and
at the end; and
(C)by inserting after
subparagraph (FF) the following new paragraph:
(GG)planning services
(as defined in subsection
(iii));
.
(2)Section 1861 of the Social Security Act (42 U.S.C.
1395x) is amended by adding at the end the following new subsection:
(iii)(1)(A)The term planning
services means a voluntary decisionmaking process that includes the
elements described in paragraph (2) and is furnished to a planning services
eligible individual by an applicable provider through an interdisciplinary
team.
(B)Planning services may only be
furnished to a planning services eligible individual under this title once in
each 12-month period.
(2)(A)The elements described
in this paragraph are the following:
(i)One or more face-to-face encounters
between one or more members of the interdisciplinary team and the individual
and, at the individual’s discretion, family caregivers, or, for an individual
who lacks decisionmaking capacity under State law, the individual’s legally
authorized representative.
(ii)The provision of information about
the typical trajectory of illnesses or conditions that affect the individual,
including foreseeable care decisions that may need to be made at a future time
when the individual is likely to be unable to make decisions due to temporary
or permanent cognitive incapacity.
(iii)Assisting the individual in defining
and articulating goals of care, values, and preferences.
(iv)Providing the individual with (and
discussing) information about the benefits and burdens of a relevant range of
treatment options available to the individual, including disease modifying or
potentially curative treatment, palliative care, which may be provided alone or
in conjunction with disease modifying treatment, and, when the individual may
be currently eligible or may become eligible for hospice care due to disease
progression, hospice care. An applicable provider shall present and discuss
relevant treatment options that may help the individual to achieve goals of
care and may not exclude options based on an individual’s age, disability
status, or the presence of advanced illness unless, in the provider's clinical
judgment, a treatment option will not achieve the outcome sought by the
individual.
(v)Assisting the individual in evaluating
treatment options and approaches to care to identify those that most closely
align with the individual’s goals of care, values, and preferences.
(vi)Preparing, and sharing with relevant
providers, documentation—
(I)that states the individual’s goals
of care, preferences, and values, preferred decisionmaking strategies, and a
plan of care that is concrete, achievable, and actionable; and
(II)that is in a paper or electronic
format, on State or locally recognized forms that are used for the purpose of
assuring that providers can follow the plan across care settings, such as
advance directives or portable treatment orders.
(vii)Referrals to providers, including
medical and social service providers, who deliver care consistent with the
plan.
(viii)Providing culturally and
educationally appropriate training for the individual and family caregivers to
support their ability to carry out the plan.
(B)Even when the individual’s decisional
capacity is impaired and another person or entity, such as an appointed agent,
proxy, or surrogate, is exercising legal authority under State law governing
decisionmaking on behalf of incapacitated individuals, the interdisciplinary
team shall make a reasonable attempt to include the individual in the planning
process.
(3)For purposes of this subsection, the
term planning services eligible individual
means an individual
that meets at least one of the following criteria:
(A)The individual is diagnosed with
metastatic or locally advanced cancer.
(B)The individual is diagnosed with
Alzheimer’s disease or another progressive dementia.
(C)The individual is diagnosed with
late-stage neuromuscular disease.
(D)The individual is diagnosed with
late-stage diabetes.
(E)The individual is diagnosed with
late-stage kidney, liver, heart, gastrointestinal, cerebrovascular, or lung
disease.
(F)The individual needs assistance with
two or more activities of daily living (defined as bathing, dressing, eating,
getting out of bed or a chair, mobility, and toileting) that are caused by one
or more progressive illnesses.
(G)The individual meets other criteria
determined appropriate by the Secretary, including criteria that are designed
to identify individuals with a need for planning services due to advancing
illness or risk of decline in cognitive function over time.
(4)For purposes of this subsection, the
term applicable provider means a hospice program (as defined in
section 1861(dd)(2)) or other provider of services (as defined in section
1861(u)) or supplier (as defined in section 1861(d)) that—
(A)furnishes planning services through an
interdisciplinary team; and
(B)meets such other requirements the
Secretary may determine to be appropriate.
(5)(A)For purposes of this
subsection, the term interdisciplinary team
means a group
that—
(i)includes—
(I)a core team of a physician or an
advance practice registered nurse, a social worker, a nurse; and, subject to
subparagraph (B), a chaplain, a minister, or the individual’s personal
religious or spiritual advisor; and
(II)when necessary to meet an
individual’s planning needs, other professionals, which may include a
pharmacist, a licensed clinical social worker, and a psychologist, either as
ongoing team members or who may be brought in as needed to address the
individual’s planning needs; and
(ii)meets requirements that may be
established by the Secretary.
(B)An applicable provider furnishing
planning services to a planning services eligible individual shall offer to the
individual (or the individual’s legally authorized representative when the
individual has been found to lack decisional capacity) the opportunity to
select either a chaplain affiliated with the provider, a minister, or personal
religious or spiritual advisor who can help to represent the individual’s
goals, values, and preferences to serve as a core team member at the
individual’s (or legally authorized representative’s) request.
(C)The requirements established by the
Secretary under subparagraph (A)(ii) shall include a requirement that
interdisciplinary team members (except for the individuals's chosen minister or
personal religious or spiritual advisor) have training and experience in
delivering person-directed planning services and in team-based delivery of
services for individuals with dementing illness and individuals with advanced
illness.
.
(3)Payment under
physician fee scheduleSection 1848(j)(3) of the Social Security
Act (42 U.S.C. 1395w–4(j)(3)) is amended by inserting (2)(GG),
after (2)(FF) (including administration of the health risk
assessment),
.
(4)Section 1862(a) of the Social Security Act (42 U.S.C.
1395y(a)) is amended—
(A)in paragraph
(1)—
(i)in
subparagraph (O), by striking and
at the end;
(ii)in
subparagraph (P) by striking the semicolon at the end and inserting ,
and
; and
(iii)by
adding at the end the following new subparagraph:
(Q)in the case of planning services (as
defined in section 1861(iii)(1)), which are furnished more frequently than is
covered under subparagraph (B) of such
section;
;
and
(B)in paragraph (7),
by striking or (P)
and inserting (P), or
(Q)
.
(5)The amendments made by this subsection shall apply to
services furnished on or after January 1, 2015.
(b)Medicaid
coverage of planning services
(1)Section 1905(a) of
the Social Security Act (42 U.S.C. 1396d(a)) is amended—
(A)by redesignating
paragraph (29) as paragraph (30);
(B)in paragraph (28),
by striking at the end and
; and
(C)by inserting after
paragraph (28) the following new paragraph:
(29)planning services (as defined in section
1861(iii));
and
.
(2)Section 1902(a)(10)(A) of the Social Security Act (42
U.S.C. 1396a(a)(10)(A)) is amended by striking and (28)
and
inserting , (28), and (29)
.
(3)
(A)Except as provided in subparagraph (B), the amendments
made by paragraphs (1) and (2) take effect on January 1, 2015.
(B)Extension of
effective date for State law amendmentIn the case of a State
plan under title XIX of the Social Security Act (42 U.S.C. 1396 et seq.) which
the Secretary determines requires State legislation in order for the plan to
meet the additional requirements imposed by the amendments made by paragraphs
(1) and (2), 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.
(c)Advanced
illness care coordination services projectSection 1115A(b)(2) of
title XI of the Social Security Act (42 U.S.C. 1315a(b)(2)) is amended—
(1)in subparagraph
(A), by adding at the end the following new sentence: The models
selected under this subparagraph shall include the model described in
subparagraph (D) and such model shall be implemented by not later than December
31, 2015.
; and
(2)by adding at the
end the following new subparagraph:
(D)Advanced
illness care coordination services model
(i)
(I)The model described in this subparagraph is a model under
which payments are made to applicable providers that furnish advanced illness
care coordination services to eligible individuals.
(II)At
least one applicable provider selected for participation under the model shall
be a hospice program (as defined in section 1861(dd)(2)).
(ii)In this subparagraph, the term applicable
provider means a hospice program (as defined in section 1861(dd)(2)) or
other provider of services (as defined in section 1861(u)) or supplier (as
defined in section 1861(d)) that—
(I)furnishes
advanced illness care coordination services through an interdisciplinary team
(as defined in section 1861(iii)(5)); and
(II)meets such other
requirements the Secretary may determine to be appropriate.
(iii)Advanced
illness care coordination servicesIn this subparagraph, the term
advanced illness care coordination services
means the following
services:
(I)Planning services
(as defined in section 1861(iii)).
(II)A
multi-dimensional assessment of the individual’s strengths and
limitations.
(III)An assessment
of the individual’s formal and informal supports, including family
caregivers.
(IV)Comprehensive
medication review and management (including, if appropriate, counseling and
self-management support).
(V)In-home
supportive services for the eligible individual and family caregivers
consistent with the care plan.
(VI)24-hour access
to emergency support in person or via telephone or telemedicine with the
individual’s medical record and care plan available to the responder.
(VII)Coordination
across health care and social service systems, including involvement of the
interdisciplinary team to evaluate quality and address concerns.
(VIII)Such other
services as specified by the Secretary.
(iv)In this subparagraph, the term eligible
individual
means an individual who—
(I)is entitled to,
or enrolled for, benefits under part A of title XVIII and enrolled under part B
of such title, but not enrolled under part C of such title; and
(II)has the need for
assistance with two or more activities of daily living (defined as bathing,
dressing, eating, getting out of bed or a chair, mobility, and toileting) that
are caused by one or more progressive
conditions.
.
4.Quality
measurement development
(a)Section 931(c)(2) of
the Public Health Service Act (42 U.S.C. 299b–31(c)(2)) is amended—
(1)by redesignating
subparagraphs (I) and (J) as subparagraphs (L) and (M), respectively;
and
(2)by inserting
after subparagraph (H) the following new subparagraphs:
(I)the process of
eliciting and documenting patient (and, where relevant and appropriate, family
caregiver) goals, preferences, and values from the patient or from a legally
authorized representative, including the articulation of goals that accurately
reflect how the patient wants to live;
(J)the
effectiveness, patient-centeredness (and, where relevant, family
caregiver-centeredness), and accuracy of care plans, including documentation of
individual goals, preferences, and values;
(K)agreement and
consistency among—
(i)the patient’s
goals, values, and preferences;
(ii)any documented
care plan;
(iii)the treatment
delivered; and
(iv)outcomes of
treatment;
.
(b)Authorization
of appropriationsThere are authorized to be appropriated to the
Secretary of Health and Human Services to carry out the amendments made by this
section, $5,000,000 for fiscal year 2014. Amounts appropriated under the
preceding sentence shall remain available until expended.
5.Inclusion of
advance care planning materials in the Medicare & You handbook
(a)Section 1804(a) of
the Social Security Act (42 U.S.C. 1395b–2(a)) is amended—
(1)in paragraph (2), by striking
and
at the end;
(2)in paragraph (3),
by striking the period at the end and inserting a semicolon; and
(3)by inserting
after paragraph (3) the following new paragraphs:
(4)information
on—
(A)care
planning;
(B)how individual
goals, values, and preferences should be considered in framing a care plan;
and
(C)a range of
approaches for treating advanced illness, including disease modifying options,
palliative care that supports individuals from the onset of advanced illness
and can be provided at the same time as all other care types, and hospice care;
and
(5)information on
documentation options for care planning or advance care planning, including
advance directives and portable treatment
orders.
.
(b)The amendments made by this section shall apply to notices
distributed on or after January 1, 2015.
6.Care Planning
Advisory Board
(a)The
Secretary of Health and Human Services shall establish the Care Planning
Advisory Board (in this section referred to as the Advisory
Board).
(b)
(1)The Advisory Board shall be composed of 15 members, to be
appointed not later than 30 days after the date of the enactment of this Act,
as follows:
(A)The President of
the United States shall appoint 3 members.
(B)The majority
leader of the Senate shall appoint 3 members.
(C)The minority
leader of the Senate shall appoint 3 members.
(D)The Speaker of
the House of Representatives shall appoint 3 members.
(E)The minority
leader of the House of Representatives shall appoint 3 members.
(2)The
membership of the Advisory Board shall include individuals who (with a
preference for individuals who also are members of the group they are appointed
to represent)—
(A)represent the
interests of—
(i)patient advocacy
groups;
(ii)older
adults;
(iii)individuals
with cognitive or functional limitations;
(iv)family
caregivers for individuals described in clause (ii) or (iii);
(v)palliative care
and hospice providers;
(vi)researchers;
(vii)ethicists;
(viii)faith
communities;
(ix)health care
providers; and
(x)health care
facilities;
(B)have demonstrated
experience in dealing with issues related to health care decisionmaking and
health care policy; and
(C)represent the
health care interests and needs of a variety of geographic areas and
demographic groups.
(c)The
Advisory Board shall advise the Secretary on issues related to care planning,
advanced illness coordination services, advance care planning, and
documentation options, including how to—
(1)assure that
individuals with advanced illness receive person- and family-centered
care;
(2)assist
individuals with advanced illness to develop a treatment plan that is formed
around their goals, values, and preferences, that is informed by research on
disease trajectory, and that includes a documented plan that is realistic,
actionable, and concrete, and that may include the use of advance directives,
portable treatment orders (where appropriate), or other forms used in the State
or locality;
(3)develop and
monitor a demonstration program that includes an optimal service array to
support individuals with advanced illness with services designed to manage
symptoms as illness progresses;
(4)provide health
care that is consistent with individuals’ current treatment preferences or, for
those whose capacity to make decisions is impaired, with the individuals’
values and goals, and specific directions documented in advance directives and
portable treatment orders;
(5)encourage
provider participation in educational and training activities addressing care
planning, advanced illness care, and advance care planning;
(6)develop quality
measures, including process, outcome, and experience measures, that applicable
providers should report for planning services (as defined in section 1861(iii)
of the Social Security Act, as added by section 3);
(7)determine the
appropriate role for discharge planners in educating individuals and their
families about care planning services, advance care planning, palliative care,
hospice, advance directives, portable treatment orders, and other relevant
services, supports, planning tools, and documentation options;
(8)develop and
promote best practices in communications about advanced illness between
providers, individuals, and family caregivers in different settings, including
acute care hospitals;
(9)evaluate the
feasibility of replacing life expectancy in months with clinical criteria to
determine eligibility for hospice care; and
(10)promote
effective advance care planning and effective and appropriate use of portable
treatment orders.
(d)The Federal Advisory Committee Act (5 U.S.C. App.) shall
apply to the Advisory Board.
(e)
(1)No compensation
for members of Advisory BoardExcept as provided in paragraph
(2), a member of the Advisory Board may not receive pay, allowances, or
benefits by reason of their service on the Board.
(2)Each member shall receive travel expenses, including per
diem in lieu of subsistence under subchapter I of chapter 57 of title 5, United
States Code.
(f)Not
later than 3 years after the establishment of the Advisory Board, the Advisory
Board shall submit to Congress a final report containing the findings and
conclusions of the Advisory Board, together with recommendations for such
legislation and administrative actions as the Advisory Board considers
appropriate.
(g)The
Advisory Board shall terminate 30 days after submitting the report under
subsection (f).
(h)Authorization
of appropriationsThere are authorized to be appropriated such
sums as may be necessary to carry out this section.
7.Improvement of policies related to the use
and portability of advance directives
(a)Section 1866(f) of the
Social Security Act (42 U.S.C.
1395cc(f)) is amended—
(1)in paragraph (1)—
(A)in subparagraph (A)(i), by striking
State law
and all that follows through medical
care
and inserting relevant State and Federal law (whether
statutory or as recognized by the courts) to make decisions concerning medical
care
;
(B)by striking
subparagraph (B);
(C)by redesignating
subparagraphs (C), (D), and (E) as subparagraphs (G), (H), and (I),
respectively;
(D)by inserting
after subparagraph (A) the following new subparagraphs:
(B)to document in a prominent part of the
individual's current medical record whether or not the individual has an
advance directive or portable treatment order, to request a copy of the advance
directive or portable treatment order, as applicable, and if received, to
include the copy (or the content of the document or documents) in a prominent
part of such record;
(C)to provide each individual with the
opportunity to discuss the information provided pursuant to subparagraph (A)
with an appropriately trained employee or volunteer of the provider or
organization;
(D)for an individual with decisional
capacity under State law, to follow the individual’s current treatment
instructions, as expressed in writing or through verbal or nonverbal
communications;
(E)for an individual who lacks decisional
capacity—
(i)to ensure that treatment decisions
are made in accordance with current preferences, values, and goals of the
individual, when possible to ascertain and follow, and in accordance with
current advance directives and portable treatment orders that are valid under
State law where the care is delivered, and instructions provided by legally
authorized representatives in accordance with State and Federal law;
(ii)in the absence of a current
advance directive or portable treatment order that is valid under State law
where the care is delivered, to deliver treatment based on credible evidence of
the individual’s treatment preferences, goals, and values, such as a current
advance directive or portable treatment order executed in another State or past
statements about treatment preferences; and
(iii)to reconcile actual or suspected
discrepancies among advance directives, portable treatment orders, and other
evidence in accordance with State law, and, where State law is silent, to
reconcile discrepancies in the manner most likely to deliver treatment that is
consistent with the individual’s treatment preferences, goals, and
values;
(F)that specify narrow, but potentially
recurring, conditions or circumstances under which an advance directive,
portable treatment order, or treatment directions from an individual or legally
authorized representative would not be followed, such as—
(i)where the validity or authenticity
of a document is in question;
(ii)where there is evidence that an
individual’s preferences changed after the individual documented preferences in
an advance directive or portable treatment order;
(iii)where the treatment sought by the
individual is not medically indicated; and
(iv)because of conscience objections
in accordance with paragraph (3);
;
(E)in subparagraph
(H), as redesignated by subparagraph (C), by striking State law
and all that follows through respecting
and inserting
this section and relevant State and Federal law (whether statutory or as
recognized by the courts) respecting
;
(F)in subparagraph
(I), as redesignated by subparagraph (C), by inserting and portable
treatment orders
before the period at the end;
(G)in the flush
matter at the end, by striking (C)
and inserting
(G)
; and
(H)by adding at the
end the following new sentence: Nothing in subparagraph (D) or (E) shall
be construed to apply to sterilization or abortion.
;
(2)by redesignating
paragraphs (3) and (4) as paragraphs (4) and (5), respectively;
(3)by inserting
after paragraph (2) the following new paragraph:
(3)Nothing in this section shall be
construed to prohibit the application of a State law which allows for an
objection on the basis of conscience for any health care provider or any agent
of such provider which as a matter of conscience cannot implement an advance
directive.
;
(4)in paragraph (4),
as redesignated by paragraph (2)—
(A)by striking
written
;
(B)by striking
State law
and inserting State or Federal law
;
and
(C)by striking
of the State
;
(5)by redesignating
paragraph (5), as redesignated by paragraph (2), as paragraph (6);
(6)by inserting
after paragraph (4) the following new paragraph:
(5)In this subsection, the term
portable treatment order
means a treatment order designed to
document a clinical process that includes shared, informed medical
decisionmaking, that reflects the individual’s goals of care and values, and
that is designed to apply across care settings, including the
home.
; and
(7)by inserting
after paragraph (6), as redesignated by paragraph (6), the following new
paragraph:
(7)Nothing in this subsection shall
permit the Secretary to seek civil penalties, including exclusion from
participation in the program under this title or the program under title XIX,
against an individual or entity if the individual or entity—
(A)used reasonable efforts to deliver
care that is consistent with an individual's goals, preferences, and values
when addressing decisionmaking for an individual who lacks decisional capacity;
or
(B)declined to furnish care in accordance
with paragraph
(3).
.
(b)Section 1902(w) of the
Social Security Act (42 U.S.C.
1396a(w)) is amended—
(1)in paragraph (1)—
(A)in subparagraph (A)(i), by striking
State law
and all that follows through medical
care
and inserting relevant State and Federal law (whether
statutory or as recognized by the courts) to make decisions concerning medical
care
;
(B)by striking
subparagraph (B);
(C)by redesignating
subparagraphs (C), (D), and (E) as subparagraphs (F), (G), and (H),
respectively;
(D)by inserting
after subparagraph (A) the following new subparagraphs:
(B)to document in a prominent part of the
individual's current medical record whether or not the individual has an
advance directive or portable treatment order, to request a copy of the advance
directive and or portable treatment order, and if received, to include the copy
(or the content of the document or documents) in a prominent part of such
record;
(C)to provide each individual with the
opportunity to discuss the information provided pursuant to subparagraph (A)
with an appropriately trained personnel of the provider or organization;
(D)for an individual with decisional
capacity under State law, to follow the individual’s current treatment
instructions, as expressed in writing or through verbal or non-verbal
communications;
(E)for an individual who lacks decisional
capacity—
(i)to ensure that treatment decisions
are made in accordance with State law addressing legally authorized
representatives and advance directives;
(ii)in the absence of a current
advance directive or portable treatment order, to deliver treatment based on
credible evidence of the individual’s treatment preferences, goals, and values,
such as an advance directive or portable treatment order executed in another
State or past statements about treatment preferences; and
(iii)to reconcile actual or suspected
discrepancies among advance directives, portable treatment orders, and other
evidence in accordance with State law, and, where State law is silent, to
reconcile discrepancies in the manner most likely to deliver treatment that is
consistent with the individual’s treatment preferences, goals, and
values;
(F)that specify narrow, but potentially
recurring, conditions or circumstances under which an advance directive,
portable treatment order, or treatment directions from an individual or legally
authorized representative would not be followed, such as—
(i)where the validity or authenticity
of a document is in question;
(ii)where there is evidence that an
individual’s preferences changed after the individual documented preferences in
an advance directive or portable treatment order;
(iii)where the treatment sought by the
individual is not medically indicated; and
(iv)because of conscience objections
in accordance with paragraph (3);
;
(E)in subparagraph
(H), as redesignated by subparagraph (C), by striking State law
and all that follows through respecting
and inserting
this section and relevant State and Federal law (whether statutory or as
recognized by the courts) respecting
;
(F)in subparagraph
(I), as redesignated by subparagraph (C), by inserting and portable
treatment orders
before the period at the end;
(G)in the flush
matter at the end, by striking (C)
and inserting
(G)
; and
(H)by adding at the
end the following new sentence: Nothing in subparagraph (D) or (E) shall
be construed to apply to sterilization or abortion.
; and
(2)in paragraph
(4)—
(A)by striking
written
;
(B)by striking
State law
and inserting State or Federal law
;
and
(C)by striking
of the State
;
(3)by redesignating
paragraph (5) as paragraph (6);
(4)by inserting
after paragraph (4) the following new paragraph:
(5)In this subsection, the term
portable treatment order
means a treatment order designed to
document a clinical process that includes shared, informed medical
decisionmaking, that reflects the individual’s goals of care and values, and
that is designed to apply across care settings, including the
home.
;
and
(5)by inserting
after paragraph (6), as redesignated by paragraph (3), the following new
paragraph:
(7)Nothing in this subsection shall
permit the Secretary to seek civil penalties, including exclusion from
participation in the program under this title or the program under title XVIII,
against an individual or entity if the individual or entity—
(A)used reasonable efforts to deliver
care that is consistent with an individual's goals, preferences, and values
when addressing decisionmaking for an individual who lacks decisional capacity;
or
(B)declined to furnish care in accordance
with paragraph
(3).
.
(c)Clarification
with respect to advance directivesSection 7 of the Assisted
Suicide Funding Restriction Act of 1997 (42 U.S.C. 14406) is amended—
(1)in paragraph (1),
by striking or
at the end; and
(2)by striking
paragraph (2) and inserting the following:
(2)to require any
provider or organization, or any employee of such a provider or organization,
to follow or be bound by a request from an individual or legally authorized
representative, an advance directive, or a portable treatment order that
directs the purposeful causing of, or the purposeful assisting in causing, the
death of any individual, such as by assisted suicide, euthanasia, or mercy
killing; or
(3)to allow
discrimination against or imposition of penalties on any provider or
organization, or any employee of such a provider or organization, that refuses,
for any reason, including an objection based on a religious, conscience, or
moral objection, to inform, counsel, or in any way participate in the
purposeful causing of, or the purposeful assisting in causing, the death of any
individual, such as by assisted suicide, euthanasia, or mercy
killing.
.
(d)
(1)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 the
enactment of this Act.
(2)Extension of effective date for State law
amendmentIn 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 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.
8.Additional
requirements for facilities
(a)
(1)Section 1866(a)(1) of the Social Security Act (42 U.S.C. 1395cc(a)(1)) is
amended—
(A)in subparagraph
(V), by striking and
at the end;
(B)in subparagraph
(W), as added by section 3005(1)(C) of the Patient Protection and Affordable
Care Act (Public Law 111–148), by redesignating such subparagraph as
subparagraph (X), moving such subparagraph to follow subparagraph (V), moving
such subparagraph 2 ems to the left, and striking the period at the end and
inserting a comma;
(C)in subparagraph
(W), as added by section 6406(b)(3) of the Patient Protection and Affordable
Care Act (Public Law 111–148), by redesignating such subparagraph as
subparagraph (Y), moving such subparagraph to follow subparagraph (X), as added
by subparagraph (B), moving such subparagraph 2 ems to the left, and striking
the period at the end and inserting , and
; and
(D)by inserting
after subparagraph (Y) the following new subparagraph:
(Z)in the case of hospitals, skilled
nursing facilities, home health agencies, and hospice programs, to assure that
appropriate documentation of care plans made while the individual received care
by or through the provider (which may include advance directives, portable
orders, or other locally appropriate documents) be completed prior to discharge
to allow the plan to be carried out after
discharge.
.
(2)The amendments made by this subsection shall apply to
agreements entered into or renewed on or after January 1, 2015.
(b)
(1)The Secretary of Health and Human Services
shall conduct a study on the extent to which hospitals, skilled nursing
facilities, hospice programs, home health agencies, and applicable providers of
planning services under section 1861(iii) of the Social Security Act, as added
by section 3(a), work with individuals to—
(A)engage in a care planning process;
(B)thoroughly and completely document the care
planning process in the medical record;
(C)complete documents necessary to support the
treatment and care plan, such as portable treatment orders and advance
directives;
(D)provide services
and support that is free from discrimination based on advanced age, disability
status, or advanced illness; and
(E)provide documentation necessary to carry
out the treatment plan to—
(i)subsequent providers or facilities;
and
(ii)the individual, their legally authorized
representatives, and, where appropriate and relevant, their family
caregiver.
(2)Not later than January 1, 2018, 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 action as the Secretary determines to be
appropriate.
9.Grants for
increasing public awareness of advance care planning and advanced illness
care
(a)Material and
resources development
(1)The Secretary of Health and Human Services (in this
section referred to as the Secretary
) is authorized to award
grants to entities described in subsection (d) to develop online training
modules, decision support tools, and instructional materials for individuals,
family caregivers, and health care providers that include—
(A)for healthy
individuals, the importance of—
(i)identifying an
individual who will make treatment decisions in the event of future cognitive
incapacity;
(ii)discussing
values and goals relevant to catastrophic injury or illness; and
(iii)completing an
advance directive that—
(I)appoints a
surrogate; and
(II)documents goals
and values and other information that should be considered in making treatment
decisions;
(B)for individuals
with advanced illness, the importance of—
(i)articulating
goals of care;
(ii)understanding
prognosis and typical disease trajectory;
(iii)evaluating
treatment options in light of goals of care;
(iv)developing a
treatment plan; and
(v)documenting the
treatment plan on advance directives, portable treatment orders, and other
documentation forms used in the locality where the plan is to be
executed;
(C)the role and
effective use of State and other advance directive forms and portable treatment
orders; and
(D)the range of
services for individuals facing advanced illness, including planning services,
palliative care, and hospice care.
(2)Any
grant awarded under paragraph (1) shall be for a period of 3 years.
(b)Establishment
and maintenance of web- and telephone-Based resources
(1)The Secretary is authorized to award grants to entities
described in subsection (d) to establish and maintain a website and telephone
hotline to disseminate resources developed under subsection (a) and materials
designed by the Department of Health and Human Services Center for Faith-Based
and Neighborhood Partnerships for faith communities.
(2)Any
grant awarded under paragraph (1) shall be for a period of 5 years.
(3)Ability to
sustain activitiesThe Secretary shall take into account the
ability of an entity to sustain the activities described in paragraph (1)
beyond the 5-year grant period in determining whether to award a grant under
paragraph (1) to the entity.
(c)National public
education campaign
(1)The Secretary is authorized to award grants to entities
described in subsection (d) to conduct a national public education campaign to
raise public awareness of advance care planning and advanced illness care,
including the availability of the resources created under subsections (a) and
(b).
(2)Any
grant awarded under paragraph (1) shall be for a period of 5 years.
(d)Entities described in this subsection are public or
private entities (including States or political subdivisions of a State,
faith-based organizations, and religious educational institutions), or a
consortium of any such entities.
(e)Authorization
of appropriations
(1)There are authorized to be appropriated to the
Secretary—
(A)for purposes of
making grants under subsection (a), $5,000,000 for fiscal year 2015, to remain
available until expended;
(B)for purposes of
making grants under subsection (b), $5,000,000 for fiscal year 2015, to remain
available until expended; and
(C)for purposes of
making grants under subsection (c), $5,000,000 for fiscal year 2015 to remain
available until expended.
(2)None
of the funds appropriated under paragraph (1) shall be used to—
(A)develop a model
advance directive;
(B)develop or employ
a dollars-per-quality adjusted life year (or similar measure that discounts the
value of a life because of an individual's disability); or
(C)make a grant to a
private entity that advocates, promotes, or facilitates any item or procedure
for which funding is unavailable under the Assisted Suicide Funding Restriction
Act of 1997 (Public Law 105–12).
10.HHS study and report on the storage of
advance directives
(a)The Secretary of Health and Human Services
shall conduct a study on State and regional activities with respect to storing
completed advance directives and portable treatment orders. Such study shall
include an analysis of the practicality and feasibility of establishing a
national registry for completed advance directives and portable treatment
orders, taking into consideration the constraints created by the privacy
provisions enacted as a result of the Health Insurance Portability and
Accountability Act of 1996 (Public Law 104–191).
(b)Not later than January 1, 2017, 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 action as the Secretary determines to be
appropriate.
11.GAO study and
report on the provisions of, and amendments made by, this Act
(a)The
Comptroller General of the United States (in this section referred to as the
Comptroller General
) shall conduct a study on the provisions of,
and amendments made by, this Act, including the quality (such as individual and
family experience, individual understanding of treatment choices, and alignment
among individual goals, values, and preferences, the documented care plan,
treatment delivered, and treatment outcomes) associated with such provisions
and such amendments.
(b)Not
later than January 1, 2018, the Comptroller General shall submit to Congress a
report containing the results of the study conducted under subsection (a),
together with recommendations for such legislation and administrative action as
the Comptroller General determines appropriate.
12.Consultation
with the Care Planning Advisory BoardThe Secretary of Health and Human Services
shall consult with the Care Planning Advisory Board established under section 6
in order to ensure that every activity carried out under the provisions of, and
amendments made by, this Act will help individuals to—
(1)receive education
and care that is free from discrimination based on advanced age, disability
status, or presence of advanced illness;
(2)develop plans and
receive care that is consistent with each individual’s goals, values and
preferences; and
(3)receive an
explanation of a range of perspectives on approaches for treating advanced
illness, including disease modifying options, palliative care that supports
individuals from the onset of advanced illness and can be provided at the same
time as all other care types, and hospice care.
13.Nothing in the
provisions of, or the amendments made by, this Act shall be construed to limit
the restrictions of, or to authorize the use of Federal funds for any service,
material, or activity pertaining to an item or service or procedure for which
funds are unavailable under, the Assisted Suicide Funding Restriction Act of
1997 (Public Law 105–12).