HR 5192
110th CONGRESS
2d Session
H. R. 5192
To improve the palliative and end-of-life care provided to children
with life-threatening conditions, and for other purposes.
IN THE HOUSE OF REPRESENTATIVES
January 29, 2008
Ms. PRYCE of Ohio (for herself and Mr. MURTHA) 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 improve the palliative and end-of-life care provided to children
with life-threatening conditions, 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 `Children's 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.
TITLE I--GRANTS TO EXPAND PEDIATRIC PALLIATIVE CARE SERVICES AND RESEARCH
Sec. 101. Education and training.
Sec. 102. Grants to expand pediatric palliative care.
Sec. 103. Pediatric palliative care training and residency grants.
Sec. 104. Model program grants.
TITLE II--PEDIATRIC PALLIATIVE CARE DEMONSTRATION PROJECTS
Sec. 201. Medicare pediatric palliative care demonstration projects.
Sec. 202. Private sector pediatric palliative care demonstration projects.
Sec. 203. Symposium on pediatric palliative care.
Sec. 204. Evaluation and reports to Congress.
Sec. 205. Authorization of appropriations.
TITLE I--GRANTS TO EXPAND PEDIATRIC PALLIATIVE CARE SERVICES AND RESEARCH
SEC. 101. EDUCATION AND TRAINING.
Subpart 2 of part E of title VII of the Public Health Service Act (42
U.S.C. 295 et seq.) is amended--
(1) in section 770(a) by inserting `except for section 771,' after `carrying
out this subpart'; and
(2) by adding at the end the following:
`SEC. 771. PEDIATRIC PALLIATIVE CARE SERVICES EDUCATION AND TRAINING.
`(a) Establishment- The Secretary, acting through the Administrator of
the Health Resources and Services Administration, may award grants to
eligible entities to provide training in pediatric palliative care and
related services for children with life-threatening conditions.
`(b) Eligible Entity Defined-
`(1) IN GENERAL- In this section, the term `eligible entity' means a
health care provider that is affiliated with an academic institution,
that is providing comprehensive interdisciplinary pediatric palliative
care services, alone or through an arrangement with another entity,
and that has demonstrated experience in providing training and consultative
services in pediatric palliative care, including--
`(A) children's hospitals or other hospitals or medical centers with
demonstrated, or actively developing, capacity in providing palliative
care for children with life-threatening conditions;
`(B) pediatric hospices or hospices with significant pediatric palliative
care programs;
`(C) home health agencies with a demonstrated or developing capacity
to serve children with life-threatening conditions and that provide
pediatric palliative care; and
`(D) any other entity that the Secretary determines is appropriate.
`(2) LIFE-THREATENING CONDITION DEFINED- In this subsection, the term
`life-threatening condition' has the meaning given such term by the
Secretary (in consultation with hospice programs (as defined in section
1861(dd)(2) of the Social Security Act (42 U.S.C. 1395x(dd)(2))) and
academic experts in end-of-life care), except that the Secretary may
not limit such term to individuals who are terminally ill (as defined
in section 1861(dd)(3) of the Social Security Act (42 U.S.C. 1395x(dd)(3))).
`(c) Authorized Activities- Grant funds awarded under subsection (a) shall
be used to--
`(1) provide short-term training and education programs in pediatric
palliative care for the range of interdisciplinary health professionals
and others providing such care;
`(2) provide consultative services and guidance to health care providers
that are developing and building comprehensive interdisciplinary pediatric
palliative care programs;
`(3) develop regional information outreach and other resources to assist
clinicians and families in local and outlying communities and rural
areas;
`(4) develop or evaluate current curricula and educational materials
being used in providing such education and guidance relating to pediatric
palliative care;
`(5) facilitate the development, assessment, and implementation of evidence-based
(when available) and best practices (as available) clinical practice
guidelines and institutional protocols and procedures for pediatric
palliative, pain management, end-of-life, supportive, and bereavement
care; and
`(6) assure that children with life-threatening conditions and the families
of such children are an integral part of these family-centered processes.
`(d) Authorization of Appropriations- There are authorized to be appropriated
to carry out this section $5,000,000 for each of fiscal years 2008 through
2012.'.
SEC. 102. GRANTS TO EXPAND PEDIATRIC PALLIATIVE CARE.
Part Q of title III of the Public Health Service Act (42 U.S.C. 280h et
seq.) is amended by adding at the end the following:
`SEC. 399Z-1. GRANTS TO EXPAND PEDIATRIC PALLIATIVE CARE.
`(a) Establishment- The Secretary, acting through the Administrator of
the Health Resources and Services Administration, may award grants to
eligible entities to implement or expand pediatric palliative care programs
for children with life-threatening conditions.
`(b) Eligible Entity Defined- In this section, the term `eligible entity'
means--
`(1) children's hospitals or other hospitals with a capacity (or those
developing a capacity) and ability to care for children with life-threatening
conditions;
`(2) hospices with a demonstrated or developing capacity and ability
to provide palliative care (including symptom management, assistance
with and support in decisionmaking) for children with life-threatening
conditions and their families in a family-centered manner; and
`(3) home health agencies with--
`(A) a demonstrated capacity (or developing capacity) and ability
to care for children with life-threatening conditions; and
`(B) demonstrated expertise (or actively developing capacity) in providing
pediatric palliative care.
`(c) Authorized Activities- Grant funds awarded under subsection (a) shall
be used to--
`(1) create new or expand existing pediatric palliative care programs;
`(2) start or expand needed additional care settings, such as respite,
hospice, outpatient, inpatient day services, or other care settings
to provide a continuum of care across inpatient, home, and community-based
settings for pediatric palliative care;
`(3) expand comprehensive pediatric palliative care services, including
care coordination services, to greater numbers of children with life-threatening
conditions and broader service areas, including regional and rural outreach;
and
`(4) support communication linkages and care coordination, applying
telemedicine and teleconferencing technologies, and measures to improve
both patient and family safety, and measures to improve efficacy and
quality.
`(d) Application- Each eligible entity desiring a grant under this section
shall submit an application to the Administrator at such time, in such
manner, and containing such information as the Administrator may require.
`(e) Authorization of Appropriations- There are authorized to be appropriated
to carry out this section $10,000,000 for each of fiscal years 2008 through
2012.'.
SEC. 103. PEDIATRIC PALLIATIVE CARE TRAINING AND RESIDENCY GRANTS.
Part A of title IV of the Public Health Service Act (42 U.S.C. 281 et
seq.) is amended by adding at the end the following:
`SEC. 404I. PEDIATRIC PALLIATIVE CARE TRAINING AND RESIDENCY GRANTS.
`(a) Establishment- The Director of the National Institutes of Health
is authorized to award training grants to eligible entities to expand
the number of physicians, nurses, mental health professionals, and appropriate
allied health professionals and specialists (as determined by the Secretary)
with interdisciplinary pediatric palliative clinical training and research
experience.
`(b) Eligible Entity Defined- In this section, the term `eligible entity'
means--
`(1) a pediatric department of a medical school and other related departments
including--
`(2) a school of nursing (when partnering with physicians or a provider
eligible to receive payments under title XVIII of the Social Security
Act (42 U.S.C. 1395 et seq.), as available);
`(3) a school of psychology (when partnering with physicians or a provider
eligible to receive payments under title XVIII of the Social Security
Act (42 U.S.C. 1395 et seq.), as available);
`(4) a school of social work (when partnering with physicians or a provider
eligible to receive payments under title XVIII of the Social Security
Act (42 U.S.C. 1395 et seq.), as available);
`(5) a children's hospital or other hospital with demonstrated expertise
or developing capacity to serve pediatric patients with life-threatening
conditions; and
`(6) an entity that has access to a continuum of care such as acute
care, inpatient, hospice, outpatient, or home-based hospice to fully
expose the trainee to palliative care.
`(c) Application- Each eligible entity desiring a grant under this section
shall submit an application to the Director at such time, in such manner,
and containing such information as the Director may require. Such application
shall include a plan for evaluating outcomes.
`(d) Authorization of Appropriations- There are authorized to be appropriated
to carry out this section $5,000,000 for each of fiscal years 2008 through
2012.'.
SEC. 104. MODEL PROGRAM GRANTS.
Part Q of title III of the Public Health Service Act (42 U.S.C. 280h et
seq.), as amended by section 102, is further amended by adding at the
end the following:
`SEC. 399Z-2. MODEL PROGRAM GRANTS.
`(a) Establishment- The Secretary may award grants to eligible entities
to enhance pediatric palliative care and care for children with life-threatening
conditions in general pediatric or family practice residency training
programs and general or pediatric nursing education programs through the
development of model interdisciplinary programs that partner with other
health professional schools such as psychology, pharmacology, nursing,
or social work, when practicable.
`(b) Eligible Entity Defined- In this section, the term `eligible entity'
means a provider eligible to receive payments under title XVIII of the
Social Security Act (42 U.S.C. 1395 et seq.), in either a pediatric department
of--
`(3) a children's hospital; or
`(4) any other hospital with a general pediatric or family practice
residency program serving pediatric patients with life-threatening conditions.
`(c) Application- Each eligible entity desiring a grant under this section
shall submit an application to the Administrator at such time, in such
manner, and containing such information as the Administrator may require
(including a plan for evaluating outcomes).
`(d) Authorization of Appropriations- There are authorized to be appropriated
to carry out this section $5,000,000 for each of fiscal years 2008 through
2012.'.
SEC. 105. RESEARCH.
(a) Pain and Symptom Management- The Director of the National Institutes
of Health (in this section referred to as the `Director') shall provide
research grants to fund interdisciplinary research in pediatric pain and
symptom management that will utilize existing facilities of the National
Institutes of Health including--
(1) pediatric pharmacological research units;
(2) clinical translational science awardees; and
(3) other centers providing infrastructure for patient-oriented research.
(b) Eligible Entities- In carrying out subsection (a), the Director may
award grants for the conduct of pediatric pain and symptom management
research to--
(1) children's hospitals or other hospitals serving a significant number
of children with life-threatening conditions;
(2) pediatric departments of medical schools;
(3) pediatric departments of nursing schools;
(4) institutions currently participating in National Institutes of Health
network of pediatric pharmacological research units;
(5) hospices with pediatric palliative care programs and academic affiliations;
(6) pediatric departments of social work schools;
(7) pediatric departments of psychology schools;
(8) pediatric departments of pharmacology schools; and
(9) pediatric pain medicine programs.
(c) Authorization of Appropriations- There are authorized to be appropriated
to carry out this section $10,000,000, to remain available until expended.
TITLE II--PEDIATRIC PALLIATIVE CARE DEMONSTRATION PROJECTS
SEC. 201. MEDICARE PEDIATRIC PALLIATIVE CARE DEMONSTRATION PROJECTS.
(a) Definitions- In this section:
(1) CARE COORDINATION SERVICES- The term `care coordination services'
means services that provide for the coordination of, and assistance
with, referral for clinical and other services, including interdisciplinary
care conferences, coordination with other providers involved in caring
for the eligible child with a life-threatening condition, patient and
family-centered caregiver education and counseling, and such other services
as the Secretary determines to be appropriate in order to facilitate
the coordination and continuity of care furnished to an eligible child
and the family of such child.
(2) DEMONSTRATION PROJECT- The term `demonstration project' means a
demonstration project established by the Secretary under subsection
(b)(1).
(3) ELIGIBLE CHILD- The term `eligible child' means an individual with
a life-threatening condition who is entitled to benefits under part
A of the Medicare program and who is under 21 years of age.
(4) ELIGIBLE PROVIDER- The term `eligible provider' means--
(A) a pediatric palliative care program that is a public agency or
private organization (or a subdivision thereof) which--
(i)(I) is primarily engaged in providing the care and services described
in section 1861(dd)(1) of the Social Security Act (42 U.S.C. 1395(dd)(1))
and makes such services available (as needed) on a 24-hour basis
and which also provides family-centered counseling (including supportive
and bereavement counseling) for the eligible child and the immediate
family of such child;
(II) provides for such care and services in eligible children's
homes, on an outpatient basis, and on a short-term inpatient basis,
directly or under arrangements made by the agency or organization,
except that--
(aa) the agency or organization must routinely provide directly
substantially all of each of the services described in subparagraphs
(A), (C), and (H) of such section 1861(dd)(1);
(bb) in the case of other services described in such section 1861(dd)(1)
which are not provided directly by the agency or organization,
the agency or organization must maintain professional management
responsibility for all such services furnished to an eligible
child and the family of such child, regardless of the location
or facility in which such services are furnished; and
(III)(aa) identifies medical, community, and social service needs;
(bb) simplifies access to service;
(cc) uses the full range of community resources, including the friends
and family of the eligible child; and
(dd) provides educational opportunities relating to health care;
and
(ii) has an interdisciplinary group of personnel which--
(aa) 1 physician (as defined in section 1861(r)(1) of the Social
Security Act (42 U.S.C. 1395x(r)(1)));
(bb) 1 registered professional nurse;
(cc) 1 licensed mental health professional; and
(dd) 1 licensed social worker;
employed by or, in the case of a physician described in item (aa),
under contract with the agency or organization;
(II) provides (or supervises the provision of) the care and services
described in such section 1861(dd)(1); and
(III) establishes the policies governing the provision of such care
and services;
(iii) maintains central clinical records on all patients;
(iv) does not discontinue the palliative care it provides with respect
to an eligible child and the family of such child because of the
inability of the eligible child to pay for such care;
(v)(I) uses volunteers in its provision of care and services in
accordance with standards set by the Secretary, which standards
shall ensure a continuing level of effort to use such volunteers;
and
(II) maintains records on the use of these volunteers and the cost
savings and expansion of care and services achieved through the
use of these volunteers;
(vi) in the case of an agency or organization in any State in which
State or applicable local law provides for the licensing of agencies
or organizations of this nature, is licensed pursuant to such law;
(vii) seeks to ensure that eligible children and their families
receive complete, timely, understandable information about diagnosis,
prognosis, treatments, and palliative care options;
(viii) seeks to ensure access to routine pediatric care as appropriate
for the eligible child;
(ix) ensures that children and their families participate in effective
and timely prevention, assessment, and treatment of physical and
psychological symptoms of distress; and
(x) meets such other requirements as the Secretary may find necessary
in the interest of the health and safety of the eligible children
who are provided with palliative care by such agency or organization;
and
(B) any other individual or entity with an agreement under section
1866 of the Social Security Act (42 U.S.C. 1395cc) that--
(i) has demonstrated expertise in providing palliative care to pediatric
populations; and
(ii) the Secretary determines is appropriate.
(5) LIFE-THREATENING CONDITION- The term `life-threatening condition'
has the meaning given such term by the Secretary (in consultation with
hospice programs (as defined in section 1861(dd)(2) of the Social Security
Act (42 U.S.C. 1395x(dd)(2))) and academic experts in end-of-life care),
except that the Secretary may not limit such term to individuals who
are terminally ill (as defined in section 1861(dd)(3) of the Social
Security Act (42 U.S.C. 1395x(dd)(3))).
(6) MEDICARE PROGRAM- The term `Medicare program' means the health benefits
program under title XVIII of the Social Security Act (42 U.S.C. 1395
et seq.).
(7) SECRETARY- The term `Secretary' means the Secretary of Health and
Human Services.
(b) Pediatric Palliative Care Demonstration Projects-
(1) ESTABLISHMENT- The Secretary shall establish demonstration projects
in accordance with the provisions of this subsection to provide pediatric
palliative care to eligible children.
(A) ELIGIBLE PROVIDERS- Any eligible provider may furnish items or
services covered under the pediatric palliative care benefit.
(B) ELIGIBLE CHILDREN- The Secretary shall permit any eligible child
residing in the service area of an eligible provider participating
in a demonstration project to participate in such project on a voluntary
basis.
(c) Services Under Demonstration Projects-
(1) IN GENERAL- Except as otherwise provided in this subsection, the
provisions of section 1814(i) of the Social Security Act (42 U.S.C.
1395f(i)) shall apply to the payment for pediatric palliative care provided
under the demonstration projects in the same manner in which such section
applies to the payment for hospice care (as defined in section 1861(dd)(1)
of the Social Security Act (42 U.S.C. 1395x(dd)(1))) provided under
the Medicare program.
(2) COVERAGE OF PEDIATRIC PALLIATIVE CARE-
(A) IN GENERAL- Notwithstanding section 1862(a)(1)(C) of the Social
Security Act (42 U.S.C. 1395y(a)(1)(C)), the Secretary shall provide
for reimbursement for items and services provided under the pediatric
palliative care benefit made available under the demonstration projects
in a manner that is consistent with the requirements of subparagraph
(B).
(B) BENEFIT- Under the pediatric palliative care benefit, the following
requirements shall apply:
(i) WAIVER OF REQUIREMENT TO ELECT HOSPICE CARE- Each eligible child
may receive benefits without an election under section 1812(d)(1)
of the Social Security Act (42 U.S.C. 1395d(d)(1)) to receive hospice
care (as defined in section 1861(dd)(1) of such Act (42 U.S.C. 1395x(dd)(1)))
having been made with respect to the eligible child.
(ii) AUTHORIZATION FOR CURATIVE TREATMENT- Each eligible child may
continue to receive benefits for disease and symptom modifying treatment
under the Medicare program.
(iii) PROVISION OF CARE COORDINATION SERVICES- Each eligible child
shall receive care coordination services (as defined in subsection
(a)(1)) and hospice care (as so defined) through an eligible provider
participating in a demonstration project, regardless of whether
such individual has been determined to be terminally ill (as defined
in section 1861(dd)(3) of the Social Security Act (42 U.S.C. 1395x(dd)(3))).
(iv) AVAILABILITY OF INFORMATION ON PEDIATRIC PALLIATIVE CARE- Each
eligible child and the family of such child shall receive information
and education in order to better understand the utility of pediatric
palliative care.
(v) AVAILABILITY OF SUPPORTIVE AND BEREAVEMENT COUNSELING- Each
eligible child and the family of such child shall receive supportive
counseling and bereavement counseling, if appropriate.
(vi) PROVISION OF INDIVIDUAL CARE- Each eligible child and the family
of such child shall receive appropriate care that is--
(I) designed to fit the child's physical, cognitive, emotional,
and spiritual level of development that shall involve and respect
both the child and the family of such child; and
(II) effective and compassionate from diagnosis through death
and bereavement.
(vii) PROFESSIONAL EDUCATION- Each professional caring for an eligible
child shall have special responsibilities for educating themself
and others about the identification, management, and discussion
of the last phase of a child's fatal medical problem.
(viii) ADDITIONAL BENEFITS- Under the demonstration projects, the
Secretary may include any other item or service--
(I) for which payment may otherwise be made under the Medicare
program; and
(II) that is consistent with the recommendations contained in
the report published in 2003 by the Institute of Medicine of the
National Academy of Sciences entitled `When Children Die: Improving
Palliative and End-of-Life Care for Children and Their Families'.
(i) ESTABLISHMENT OF PAYMENT METHODOLOGY- The Secretary shall establish
a methodology for determining the amount of payment for pediatric
palliative care furnished under the demonstration projects that
is similar to the methodology for determining the amount of payment
for hospice care (as defined in section 1861(dd)(1) of the Social
Security Act (42 U.S.C. 1395x(dd)(1))) under section 1814(i) of
such Act (42 U.S.C. 1395f(i)), except as provided in the following
subclauses:
(I) AMOUNT OF PAYMENT- Subject to subclauses (II) and (III), the
amount of payment for pediatric palliative care shall be equal
to the amount that would be paid for hospice care (as so defined),
increased by an appropriate percentage to account for the additional
costs of providing supportive and bereavement counseling and care
coordination services (as defined in subsection (a)(1)).
(II) WAIVER OF HOSPICE CAP- The limitation under section 1814(i)(2)
of the Social Security Act (42 U.S.C. 1395f(i)(2)) shall not apply
with respect to pediatric palliative care and amounts paid for
pediatric palliative care under this subparagraph shall not be
counted against the cap amount described in such section.
(III) SEPARATE PAYMENT FOR COUNSELING SERVICES- Notwithstanding
section 1814(i)(1)(A) of the Social Security Act (42 U.S.C. 1395f(i)(1)(A)),
the Secretary may pay for bereavement counseling as a separate
service.
(ii) SPECIAL RULES FOR PAYMENT OF MEDICARE+CHOICE ORGANIZATIONS-
The Secretary shall establish procedures under which the Secretary
provides for an appropriate adjustment in the monthly payments made
under section 1853 of the Social Security Act (42 U.S.C. 1395w-23)
to any Medicare+Choice organization that provides health care items
or services to an eligible child who is participating in a demonstration
project.
(3) COVERAGE OF PEDIATRIC PALLIATIVE CARE CONSULTATION SERVICES- Under
the demonstration projects, the Secretary shall provide for a one-time
payment on behalf of each eligible child who has not yet elected to
participate in the demonstration project for services that are furnished
by a physician or advanced practice registered nurse who is either the
medical or nursing director or an employee of a provider eligible to
receive payments under title XVIII of the Social Security Act (42 U.S.C.
1395 et seq.) participating in such a project and that consist of--
(A) an evaluation of the individual's need for pain and symptom management,
including the need for pediatric palliative care;
(B) counseling the individual and the family of such individual with
respect to the benefits of pediatric palliative care and care options;
(C) if appropriate, advising the individual and the family of such
individual regarding advanced care planning; and
(d) Conduct of Demonstration Projects-
(1) SITES- The Secretary shall conduct demonstration projects in not
less than 4, but not more than 8, sites.
(2) SELECTION OF SITES- The Secretary shall select demonstration sites
on the basis of proposals submitted under paragraph (3) that are located
in geographic areas that--
(A) include both urban and rural eligible organizations;
(B) are geographically diverse and readily accessible to eligible
children; and
(C) take into account adequate representation of children of ethnic
and racial minorities.
(3) PROPOSALS- The Secretary shall accept proposals to furnish pediatric
palliative care under the demonstration projects from any eligible provider
at such time, in such manner, and in such form as the Secretary may
reasonably require.
(4) FACILITATION OF EVALUATION- The Secretary shall design the demonstration
projects to facilitate the evaluation conducted under subsection (e)(1).
(5) DURATION- The Secretary shall complete the demonstration projects
within a period of 5 years that includes a period of 1 year during which
the Secretary shall complete the evaluation under section 204.
(e) Waiver of Medicare Requirements- The Secretary shall waive compliance
with such requirements of the Medicare program to the extent and for the
period the Secretary finds necessary to conduct the demonstration projects.
SEC. 202. PRIVATE SECTOR PEDIATRIC PALLIATIVE CARE DEMONSTRATION PROJECTS.
(a) Definitions- In this section:
(1) CARE COORDINATION SERVICES- The term `care coordination services'
has the meaning given the term in section 201.
(2) DEMONSTRATION PROJECT- The term `demonstration project' means a
demonstration project established by the Secretary under subsection
(b)(1).
(3) ELIGIBLE CHILD- The term `eligible child' means an individual with
a life-threatening condition who is--
(A) under 21 years of age;
(B) enrolled for health benefits coverage under an eligible health
plan; and
(C) not enrolled under (or entitled to) benefits under a health plan
described in paragraph (5)(C).
(4) ELIGIBLE PROVIDER- The term `eligible provider' has the meaning
given the term in section 201.
(5) ELIGIBLE HEALTH PLAN-
(A) IN GENERAL- Subject to subparagraphs (B) and (C), the term `eligible
health plan' means an individual or group plan that provides, or pays
the cost of, medical care (as such term is defined in section 2791
of the Public Health Service Act (42 U.S.C. 300gg-91)).
(B) TYPES OF PLANS INCLUDED- For purposes of subparagraph (A), the
term `eligible health plan' includes the following health plans, and
any combination thereof:
(i) A group health plan (as defined in section 2791(a) of the Public
Health Service Act (42 U.S.C. 300gg-91(a))), but only if the plan--
(I) has 50 or more participants (as defined in section 3(7) of
the Employee Retirement Income Security Act of 1974 (29 U.S.C.
1002(7))); or
(II) is administered by an entity other than the employer who
established and maintains the plan.
(ii) A health insurance issuer (as defined in section 2791(b) of
the Public Health Service Act (42 U.S.C. 300gg-91(b))).
(iii) A health maintenance organization (as defined in section 2791(b)
of the Public Health Service Act (42 U.S.C. 300gg-91(b))).
(iv) A long-term care policy, including a nursing home fixed indemnity
policy (unless the Secretary determines that such a policy does
not provide sufficiently comprehensive coverage of a benefit so
that the policy should be treated as a health plan).
(v) An employee welfare benefit plan or any other arrangement which
is established or maintained for the purpose of offering or providing
health benefits to the employees of 2 or more employers.
(vi) Health benefits coverage provided under a contract under the
Federal employees health benefits program under chapter 89 of title
5, United States Code.
(C) TYPES OF PLANS EXCLUDED- For purposes of subparagraph (A), the
term `eligible health plan' does not include any of the following
health plans:
(i) The Medicare program under title XVIII of the Social Security
Act (42 U.S.C. 1395 et seq.).
(ii) The Medicaid program under title XIX of the Social Security
Act (42 U.S.C. 1396 et seq.).
(iii) A Medicare supplemental policy (as defined in section 1882(g)(1)
of the Social Security Act (42 U.S.C. 1395ss et seq.).
(iv) The health care program for active military personnel under
title 10, United States Code.
(v) The veterans health care program under chapter 17 of title 38,
United States Code.
(vi) The Civilian Health and Medical Program of the Uniformed Services
(CHAMPUS), as defined in section 1072(4) of title 10, United States
Code.
(vii) The Indian health service program under the Indian Health
Care Improvement Act (25 U.S.C. 1601 et seq.).
(6) ELIGIBLE ORGANIZATION- The term `eligible organization' means an
organization that provides health benefits coverage under an eligible
health plan.
(7) LIFE-THREATENING CONDITION- The term `life-threatening condition'
has the meaning given the term in section 201.
(8) MEDICARE PROGRAM- The term `Medicare program' means the health benefits
program under title XVIII of the Social Security Act (42 U.S.C. 1395
et seq.).
(9) PEDIATRIC PALLIATIVE CARE- The term `pediatric palliative care'
means services of the type to be furnished under the demonstration projects
under section 201, including care coordination services.
(10) PEDIATRIC PALLIATIVE CARE CONSULTATION SERVICES- The term `pediatric
palliative care consultation services' means services of the type described
in section 201(c)(3).
(11) SECRETARY- The term `Secretary' means the Secretary of Health and
Human Services, acting through the Director of the Agency for Healthcare
Research and Quality.
(b) Nonmedicare Pediatric Palliative Care Demonstration Projects-
(1) ESTABLISHMENT- The Secretary shall establish demonstration projects
under this section at the same time as the Secretary establishes the
demonstration projects under section 201 and in accordance with the
provisions of this subsection to demonstrate the provision of pediatric
palliative care and pediatric palliative care consultation services
to eligible children who are not entitled to (or enrolled for) coverage
under the health plans described in subsection (a)(3)(C).
(A) ELIGIBLE ORGANIZATIONS- The Secretary shall permit any eligible
organization to participate in a demonstration project on a voluntary
basis.
(B) ELIGIBLE CHILDREN- Any eligible organization participating in
a demonstration project shall permit any eligible child enrolled in
an eligible health plan offered by the organization to participate
in such project on a voluntary basis.
(c) Services Under Demonstration Projects-
(1) PROVISION OF PEDIATRIC PALLIATIVE CARE AND CONSULTATION SERVICES-
Under a demonstration project, each eligible organization electing to
participate in the demonstration project shall provide pediatric palliative
care and pediatric palliative care consultation services to each eligible
child who is enrolled with the organization and who elects to participate
in the demonstration project. Under the pediatric palliative care benefit,
the following requirements shall apply:
(A) WAIVER OF REQUIREMENT TO ELECT HOSPICE CARE- Each eligible child
may receive benefits without an election under section 1812(d)(1)
of the Social Security Act (42 U.S.C. 1395d(d)(1)) to receive hospice
care (as defined in section 1861(dd)(1) of such Act (42 U.S.C. 1395x(dd)(1)))
having been made with respect to the eligible child.
(B) AUTHORIZATION FOR CURATIVE TREATMENT- Each eligible child may
continue to receive benefits for disease and symptom modifying treatment
under the Medicare program.
(C) PROVISION OF CARE COORDINATION SERVICES- Each eligible child shall
receive care coordination services (as defined in subsection (a)(1))
and hospice care (as so defined) through an eligible provider participating
in a demonstration project, regardless of whether such individual
has been determined to be terminally ill (as defined in section 1861(dd)(3)
of the Social Security Act (42 U.S.C. 1395x(dd)(3))).
(D) AVAILABILITY OF INFORMATION ON PEDIATRIC PALLIATIVE CARE- Each
eligible child and the family of such child shall receive information
and education in order to better understand the utility of pediatric
palliative care.
(E) AVAILABILITY OF SUPPORTIVE AND BEREAVEMENT COUNSELING- Each eligible
child and the family of such child shall receive supportive counseling
and bereavement counseling, if appropriate.
(F) PROVISION OF INDIVIDUAL CARE- Each eligible child and the family
of such child shall receive appropriate care--
(i) that is designed to fit the child's physical, cognitive, emotional,
and spiritual level of development that shall involve and respect
both the child and the family of such child;
(ii) that is effective and compassionate from diagnosis through
death and bereavement;
(iii) that involves and respects both the eligible child and the
family of the eligible child; and
(iv) in which the family of the eligible child is a part of the
care team.
(G) PROFESSIONAL EDUCATION- Each professional caring for an eligible
child shall have special responsibilities for educating themself and
others about the identification, management, and discussion of the
last phase of a child's fatal medical problem.
(H) ADDITIONAL BENEFITS- Under the demonstration projects, the Secretary
may include any other item or service that is consistent with the
recommendations contained in the report published in 2003 by the Institute
of Medicine of the National Academy of Sciences entitled `When Children
Die: Improving Palliative and End-of-Life Care for Children and Their
Families'.
(2) AVAILABILITY OF ADMINISTRATIVE GRANTS-
(A) IN GENERAL- Subject to subparagraph (B), the Secretary shall award
grants to eligible organizations electing to participate in a demonstration
project for the administrative costs incurred by the eligible organization
in participating in the demonstration project (including care coordination),
including the costs of collecting and submitting the data required
to be submitted under subsection (d)(4)(B).
(B) NO PAYMENT FOR SERVICES- The Secretary may not pay eligible organizations
for pediatric palliative care or pediatric palliative care consultation
services furnished under the demonstration projects.
(d) Conduct of Demonstration Projects-
(1) SITES- The Secretary shall conduct demonstration projects in not
less than 4, but not more than 8, sites.
(2) SELECTION OF SITES- The Secretary shall select demonstration sites
on the basis of proposals submitted under paragraph (3) that are located
in geographic areas that--
(A) include both urban and rural eligible organizations;
(B) are geographically diverse and readily accessible to a significant
number of eligible children; and
(C) take into account adequate representation of children of ethnic
and racial minorities.
(A) IN GENERAL- The Secretary shall accept proposals to furnish pediatric
palliative care and pediatric palliative care consultation services
under the demonstration projects from any eligible organization at
such time, in such manner, and in such form as the Secretary may require.
(B) APPLICATION FOR ADMINISTRATIVE GRANTS- If the eligible organization
desires to receive an administrative grant under subsection (c)(2),
the proposal submitted under subparagraph (A) shall include a request
for the grant, specify the amount requested, and identify the purposes
for which the organization will use any funds made available under
the grant.
(4) COLLECTION AND SUBMISSION OF DATA-
(A) COLLECTION- Each eligible organization participating in a demonstration
project shall collect such data as the Secretary may require to facilitate
the evaluation to be completed under section 204.
(B) SUBMISSION- Each eligible organization shall submit the data collected
under subparagraph (A) to the Secretary at such time, in such manner,
and in such form as the Secretary may require.
(5) DURATION- The Secretary shall complete the demonstration projects
within a period of 5 years that includes a period of 1 year during which
the Secretary shall complete the evaluation under section 204.
SEC. 203. SYMPOSIUM ON PEDIATRIC PALLIATIVE CARE.
(a) Convening a Symposium- The Secretary of Health and Human Services
shall convene a symposium on Pediatric Palliative Care (in this section
referred to as the `symposium'). The symposium shall occur not later than
June 30, 2008.
(b) Purposes- The purposes of the symposium shall be to--
(1) assess the initial response to the Institute of Medicine's 2003
report on `When Children Die: Improving Palliative and End-of-Life Care
for Children and Their Families'; and
(2) increase awareness of a child's life-threatening condition or death
on the child, the family of the child, and society as a whole, and the
importance of providing quality pediatric palliative care to children
with life-threatening conditions and the families of such children in
the United States.
(c) Attendees- The Secretary of Health and Human Services, or the designee
of the Secretary, shall attend the symposium along with other nongovernmental
organizations, interested parties, and clinicians.
(d) Report- The symposium shall report to the Secretary of Health and
Human Services and the appropriate committees of Congress on recommendations
derived from the symposium and on the status of departmental research
activities concerning palliative care for children with life-threatening
conditions.
(e) Authorization of Appropriations- There are authorized to be appropriated
to carry out this section $300,000 for fiscal year 2008.
SEC. 204. EVALUATION AND REPORTS TO CONGRESS.
(a) Evaluations- During the 1-year period following the first 4 years
of the demonstration projects, the Secretary shall complete an evaluation
of the demonstration projects using outcomes in order--
(1) to determine the short-term and long-term costs and benefits of
changing hospice care (as defined in section 1861(dd)(1) of the Social
Security Act (42 U.S.C. 1395x(dd)(1))) provided under the Medicare program
to children, to include--
(A) the pediatric palliative care furnished under the demonstration
projects; and
(B) the Medicare program to permit eligible children to receive curative
and palliative care simultaneously;
(2) to review the implementation of the demonstration projects compared
to recommendations contained in the report published in 2003 by the
Institute of Medicine of the National Academy of Sciences entitled `When
Children Die: Improving Palliative and End-of-Life Care for Children
and Their Families';
(3) to determine the quality and duration of palliative care for individuals
who receive such care under the demonstration projects who would not
be eligible to receive such care under the Medicare program;
(4) to determine whether any increase in payments for pediatric palliative
care is offset by savings in other parts of the Medicare program; and
(5) to determine the projected cost of implementing the demonstration
projects on a national basis.
(1) INTERIM REPORT- Not later than the date that is 2 years after the
date on which the demonstration projects are implemented, the Secretary
shall submit an interim report to Congress on the demonstration projects.
(2) FINAL REPORT- Not later than the date that is 1 year after the date
on which the demonstration projects end, the Secretary shall submit
a final report to Congress on the demonstration projects that includes
the results of the evaluation conducted under paragraph (1) together
with such recommendations for legislation or administrative action as
the Secretary determines is appropriate.
SEC. 205. AUTHORIZATION OF APPROPRIATIONS.
(a) In General- There are authorized to be appropriated--
(1) $2,500,000, to carry out the demonstration projects under section
201;
(2) $2,500,000, to carry out the demonstration projects under section
202, including for awarding grants under subsection (c)(2) of such section;
and
(3) $300,000, to carry out section 203.
(b) Availability- Sums appropriated under subsection (a) shall remain
available without fiscal year limitation until expended.
END
