I 
109TH CONGRESS 
1ST SESSION H. R. 4249 
To provide for programs within the Department of Health and Human Serv-
ices and Department of Veterans Affairs for patients with fatal chronic 
illness, and for other purposes. 
IN THE HOUSE OF REPRESENTATIVES 
NOVEMBER 8, 2005 
Mr. OBERSTAR (for himself and Mr. RAMSTAD) introduced the following bill; 
which was referred to the Committee on Energy and Commerce, and in 
addition to the Committees on Ways and Means and Veterans’ Affairs, 
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 provide for programs within the Department of Health 
and Human Services and Department of Veterans Af-
fairs for patients with fatal chronic illness, and for other 
purposes. 
Be it enacted by the Senate and House of Representa-
tives of the United States of America in Congress assembled, 
SECTION 1. SHORT TITLE; TABLE OF CONTENTS. 
(a) SHORT TITLE.—This Act may be cited as the 
‘‘Living Well with Fatal Chronic Illness Act of 2005’’.
(b) TABLE OF CONTENTS.—The table of contents of 
this Act is as follows: 
Sec. 1. Short title; table of contents. 
Sec. 2. Department of Health and Human Services programs for patients with 
fatal chronic illnesses. 
Sec. 3. Programs through Department of Veterans Affairs regarding patients 
with fatal chronic illnesses. 
Sec. 4. Study by Institute of Medicine. 
SEC. 2. DEPARTMENT OF HEALTH AND HUMAN SERVICES 
PROGRAMS 
FOR 
PATIENTS 
WITH 
FATAL 
CHRONIC ILLNESSES. 
(a) ESTABLISHMENT OF PROGRAMS.—The Secretary 
of Health and Human Services shall carry out research, 
demonstration, and education programs with respect to 
fatal chronic illness through the Public Health Service. 
(b) STUDIES
ON END-OF-LIFE CARE.—The Sec-
retary shall conduct studies on end-of-life care through all 
relevant agencies and through the Assistant Secretary for 
Planning and Evaluation. Such studies shall include an 
examination of the development of practice parameters ap-
plicable to such care as well as research regarding such 
care. Such studies shall also include an annual report from 
the Secretary to the appropriate committees for oversight 
in Congress and to the Special Committee on Aging in 
the Senate on service delivery and quality of life for per-
sons living through fatal chronic illness and their families 
and professional caregivers.
(c) HEALTH RESOURCES AND SERVICES ADMINIS-
TRATION.— 
(1) IN GENERAL.—In carrying out subsection 
(a), the Secretary, acting through the Administrator 
of the Health Resources and Services Administra-
tion, shall carry out research, demonstration, and 
education programs toward improving the delivery of 
appropriate health and support services for patients 
with fatal chronic illnesses. 
(2) HEALTH CENTERS.—As determined appro-
priate by the Secretary, paragraph (1) may be car-
ried out through the program under section 330 of 
the Public Health Service Act (relating to commu-
nity and migrant health centers and health centers 
regarding homeless individuals and residents of pub-
lic housing), including by designating individuals 
with fatal chronic illnesses as medically underserved 
populations. 
(3) CAREGIVERS.—Programs under paragraph 
(1) shall include activities regarding appropriate 
support services for caregivers for patients with fatal 
chronic illness, including respite care. 
(4) HEALTH
PROFESSIONS
TRAINING.—Pro-
grams under paragraph (1) shall include making 
awards of grants or contracts to public and non-
profit private entities for the purpose of training 
health professionals, including students attending 
health professions schools, in the care of patients 
with fatal chronic illnesses. Such training shall in-
clude training in the provision of appropriate pallia-
tive care and appropriate referral to hospices, and 
training provided as continuing education. 
(5) INITIATIVE.—Programs under paragraph 
(1) shall include an initiative to coordinate innova-
tion, evaluation, and service delivery relating to fatal 
chronic illnesses. 
(d) AGENCY
FOR HEALTHCARE RESEARCH
AND 
QUALITY.— 
(1) IN
GENERAL.—In carrying out section 
912(c) of the Public Health Service Act, the Sec-
retary, acting through the Director of the Agency 
for Healthcare Research and Quality, shall, with re-
spect to patients with fatal chronic illnesses— 
(A) identify the causes of preventable 
health care errors and patient injury in health 
care delivery, including errors of inadequate 
mobilization of services to the home, inadequate 
continuity of caregivers, inadequate symptom 
prevention, management, and relief, or inad-
equate advance care planning;
(B) develop, demonstrate, and evaluate 
strategies for reliable performance of the care 
system, including reducing errors and improv-
ing patient safety and health outcomes; and 
(C) disseminate such effective strategies 
throughout the health care industry. 
(2) 
GRANTS.—In 
carrying 
out 
paragraph 
(1)(A), the Secretary shall make grants for the pur-
pose of developing reliable and current data and in-
sight as to the merits and efficiencies of various 
strategies for providing health care, including pallia-
tive and hospice care, and social services for patients 
with fatal chronic illnesses. 
(e) CENTERS FOR DISEASE CONTROL AND PREVEN-
TION.—The Director of the Centers for Disease Control 
and Prevention shall expand activities with respect to epi-
demiology and public health in fatal chronic illness. Such 
activities may include contracting with the Institute of 
Medicine or another national interest non-profit organiza-
tion to provide a review of the status of care for the end 
of life, which review shall be included by the Secretary in 
the annual reports to Congress under subsection (h). 
(f) NATIONAL INSTITUTES OF HEALTH.— 
(1) EXPANSION OF ACTIVITIES.—The Director 
of the National Institutes of Health (in this sub-