section referred to as the ‘‘Director’’) shall expand, 
intensify, and coordinate the activities of the Na-
tional Institutes of Health with respect to research 
on fatal chronic illness. Such activities shall include 
programs, requests for proposals, study section 
membership, advisory council membership, and 
training programs to support rapid and substantial 
improvements in understanding— 
(A) mechanisms of disability and suffering 
in fatal chronic illness and the relief and man-
agement of that disability and suffering 
through to end of life; and 
(B) human resources, service delivery ar-
rangements, technology, and financing that 
would be most useful in ensuring comfort and 
dignity for individuals with fatal chronic illness, 
and in relieving the burden for family and pro-
fessional caregivers. 
(2) 
ADMINISTRATION.—The 
Director 
shall 
carry out this subsection acting through the Direc-
tors of every Institute within the National Institutes 
of Health that has at least one fatal chronic illness 
in its purview. 
(3) COLLABORATION.—In carrying out this sub-
section, the Director of the National Institutes of
Health shall collaborate with the Department of Vet-
erans Affairs, the Agency for Healthcare Research 
and Quality, and any other agency that the Director 
determines appropriate. The Secretary of Veterans 
Affairs and the Director of the Agency for 
Healthcare Research and Quality shall assist in such 
collaboration. 
(4) RESPONSIBILITIES OF INSTITUTES.—Each 
Institute within the National Institutes of Health 
that has fatal chronic illness in its purview shall es-
tablish a plan for improving understanding of the 
mechanisms of disability and suffering in fatal 
chronic illness and the relief and management of 
that disability and suffering through to end of life. 
Since most Americans now die of chronic heart or 
lung failure, cancer, stroke, dementia, or multifacto-
rial frailty, each such Institute shall develop and im-
plement a strategic plan and a set of projects that 
aim primarily to ensure that affected patients and 
their families can live through advanced illness and 
death comfortably and meaningfully. 
(5) CENTERS OF EXCELLENCE.— 
(A) IN GENERAL.—In carrying out para-
graph (1), the Director shall make awards of 
grants and contracts to public or nonprofit pri-
vate entities for the establishment and oper-
ation of centers of excellence to carry out re-
search, demonstration, and education programs 
regarding fatal chronic illness, including pro-
grams regarding palliative care. 
(B) DESIGNATION.—In carrying out this 
subsection, the Director shall designate at least 
2 Claude D. Pepper Older Americans Independ-
ence Centers (supported by the National Insti-
tute on Aging), 2 program projects of the Na-
tional, Heart, Lung, and Blood Institute, and 2 
comprehensive cancer centers (supported by the 
National Cancer Institute) to provide education 
and information support and research data and 
methods leadership for substantial and rapid 
improvements in the understanding of the 
mechanisms of disability and suffering in fatal 
chronic illness and the relief and management 
of that disability and suffering through to the 
end of life. 
(C) RESEARCH.—Each center established 
or operated under subparagraph (A) or des-
ignated under subparagraph (B) shall conduct 
basic and clinical research into fatal chronic ill-
ness.
(D) CERTAIN ACTIVITIES.—The Secretary 
shall ensure that, with respect to the geographic 
area in which a center of excellence under sub-
paragraph (A) is located, the activities of the 
center include— 
(i) providing information and edu-
cation regarding fatal chronic illness to 
health professionals and the public; 
(ii) serving as a resource through 
which health professionals, and patients 
and their caregivers, can plan and coordi-
nate the provision of health and support 
services regarding fatal chronic illness; and 
(iii) providing training and support of 
implementation of quality improvement. 
(g) MEDICARE PILOT PROGRAMS FOR TREATMENT 
OF FATAL CHRONIC ILLNESSES.— 
(1) ESTABLISHMENT.—The Secretary, in all 
relevant parts of the Department of Health and 
Human Services, including the Centers for Medicare 
& Medicaid Services and the Office of the Assistant 
Secretary for Planning and Evaluation, shall provide 
for pilot programs under this subsection. The pilot 
programs shall be developed under a coordinated na-
tional effort in order to demonstrate innovative, ef-
fective means of delivering care to Medicare bene-
ficiaries with fatal chronic illnesses under the Medi-
care program. The pilot programs shall be completed 
within 5 years after the date that funds are first ap-
propriated under this subsection. 
(2) DESIGN.—The pilot programs under this 
subsection shall be designed to learn how— 
(A) to effectively and efficiently deliver 
quality care to the fatally chronically ill; 
(B) to provide and maintain continuity of 
care for the fatally chronically ill; 
(C) to provide advance care planning to 
the fatally chronically ill; 
(D) to determine what rate and strategies 
for payment are most appropriate; 
(E) to deliver emergency care for the fa-
tally chronically ill; 
(F) to facilitate access to hospice care 
when the Medicare beneficiary becomes eligible 
for such care; 
(G) to develop and estimate the effect of 
potential alternative severity criteria for eligi-
bility of specially tailored programs; 
(H) to test the effectiveness and costs of 
new strategies for family caregivers support;
(I) to implement a clinical services and 
payment program that uses thresholds of sever-
ity to define the onset of the need for com-
prehensive end-of-life services; 
(J) to test the merits of using severity cri-
teria (relating to fatal chronic illness) in deter-
mining eligibility for the Medicare hospice pro-
gram, but only when use of such criteria ex-
pands access to hospice care to individuals who 
are not yet terminally ill (as that term is de-
fined at section 1861(dd)(3)(A) of the Social 
Security Act); and 
(K) to arrange financial incentives so that 
substantially diminished payments arise when 
care providers fail to ensure timely advance 
care planning, symptom prevention, manage-
ment, and relief, or continuity of care across 
time and settings. 
(3) CONDUCT OF PILOT PROGRAMS.—The Sec-
retary shall conduct pilot programs in at least 6 
sites and in at least 3 States. 
(4) REPORT
TO
CONGRESS.—The Secretary 
shall submit to Congress a report on the pilot pro-
grams under this subsection. Such report shall in-
clude recommendations regarding whether the pilot