serious, complex, and chronic illness in the United 
States and for the families of such patients and sur-
vivors. 
(b) PARTICIPANTS.—The Summit shall include rep-
resentatives from at least the following: 
(1) Federal agencies, including— 
(A) the Department of Health and Human 
Services, including from the Centers for Disease 
Control and Prevention, the Health Resources 
and Services Administration, the Agency for 
Healthcare Research and Quality, the Centers 
for Medicare & Medicaid Services, and the Na-
tional Institutes of Health; 
(B) the Department of Veterans Affairs; 
and 
(C) the Department of Defense. 
(2) Private organizations, including— 
(A) health professional organizations that 
represent physicians, nurses, pharmacists, and 
social workers; 
(B) patient non-profit organizations (as 
defined in section 4(g)); 
(C) private health insurance organizations; 
(D) faith community representatives; and 
VerDate Mar 15 2010 
02:19 Jul 21, 2012
Jkt 019200
PO 00000
Frm 00006
Fmt 6652
Sfmt 6201
E:\BILLS\H6157.IH
H6157
rfrederick on DSK6VPTVN1PROD with BILLS
(E) other professionals as deemed appro-
priate by the Secretary. 
(c) STEERING COMMITTEE.— 
(1) IN GENERAL.—The Secretary shall establish 
a Summit Steering Committee to plan the Summit, 
coordinate participants of the Summit, develop an 
agenda for the Summit that is in accordance with 
subsection (d), and draft a summary report detailing 
recommendations made by the participants of the 
Summit for a national strategic action agenda to im-
prove patient-centered care and quality of life (in 
this Act to be referred to as the ‘‘National Action 
Agenda’’) in accordance with subsection (d)(4). The 
Secretary shall appoint the representatives described 
in paragraph (2)(A) and shall seek nominations 
from relevant stakeholders and, from such nomina-
tions, appoint representatives described in paragraph 
(2)(B). 
(2) COMPOSITION.—The Summit Steering Com-
mittee shall consist of at least the following mem-
bers: 
(A) MEMBERS
FROM
FEDERAL
AGEN-
CIES.— 
(i) The Secretary, who will serve as 
chair of the Committee. 
VerDate Mar 15 2010 
02:19 Jul 21, 2012
Jkt 019200
PO 00000
Frm 00007
Fmt 6652
Sfmt 6201
E:\BILLS\H6157.IH
H6157
rfrederick on DSK6VPTVN1PROD with BILLS
(ii) Four representatives from Federal 
agencies described in subsection (b) (or 
any other Federal agency deemed appro-
priate by the Secretary), to be appointed 
by the Secretary. 
(B) MEMBERS
REPRESENTING
STAKE-
HOLDER ENTITIES.— 
(i) Six representatives of health pro-
fessionals (with each of such 6 representa-
tives having research, clinical, and teaching 
or mentoring expertise). 
(ii) Three representatives of patient 
advocacy organizations. 
(iii) One representative of a private 
health insurance organization. 
(iv) One representative of faith com-
munities. 
(v) Two physicians. 
(vi) Two nurses. 
(vii) One social worker. 
(d) AGENDA.—The agenda for the Summit shall 
focus on specific areas that include at least the following: 
(1) Improving communication and coordination 
of health care among primary care providers, med-
ical specialists, and other health professionals and 
VerDate Mar 15 2010 
02:19 Jul 21, 2012
Jkt 019200
PO 00000
Frm 00008
Fmt 6652
Sfmt 6201
E:\BILLS\H6157.IH
H6157
rfrederick on DSK6VPTVN1PROD with BILLS
seriously ill patients and families of such patients to 
ensure that symptoms are managed and other qual-
ity of life needs are met to support the continued 
functioning and well-being of such patients. 
(2) Examining the appropriate roles of both 
physician and non-physician professionals (such as 
nurse practitioners, clinical social workers, physician 
assistants, and other patient or survivor navigators 
or case coordinators) in strengthening access to inte-
grated, coordinated, or palliative care across care 
settings for all seriously ill patients and families of 
such patients. 
(3) Examining the role of health information 
technology in promoting delivery of integrated care 
to such patients. 
(4) Developing recommendations for a National 
Action Agenda, which shall specify research, surveil-
lance, health information technology, workforce 
training, delivery of care, and communication activi-
ties required to collectively address barriers to 
achieving integrated palliative care for seriously ill 
patients in all care settings. Such agenda shall in-
clude strategies for reducing disparities among medi-
cally underserved populations. 
VerDate Mar 15 2010 
02:19 Jul 21, 2012
Jkt 019200
PO 00000
Frm 00009
Fmt 6652
Sfmt 6201
E:\BILLS\H6157.IH
H6157
rfrederick on DSK6VPTVN1PROD with BILLS
(e) REPORT.—Not later than one year after the last 
day of the Summit, the Secretary of Health and Human 
Services shall submit to the Committee on Energy and 
Commerce of the House of Representatives and the Com-
mittee on Health, Education, Labor, and Pensions of the 
Senate a report on the recommendations made by the par-
ticipants of the Summit and shall make such recommenda-
tions available to the public. 
(f) SERIOUSLY ILL PATIENT DEFINED.—For pur-
poses of this Act, the term ‘‘seriously ill patient’’ means 
an individual who has a serious health condition (as de-
fined in section 101(11) of the Family and Medical Leave 
Act of 1993 (26 U.S.C. 2911(11)). 
(g) AUTHORIZATION OF APPROPRIATIONS.—There is 
authorized to be appropriated to carry out this section 
such sums as are necessary for each of the fiscal years 
2013 through 2017. 
SEC. 4. QUALITY OF LIFE PATIENT AND PROFESSIONAL 
AWARENESS GRANTS PROGRAM INITIATIVE. 
Title III of the Public Health Service Act (42 U.S.C. 
241 et seq.) is amended by adding at the end the following 
new part: 
VerDate Mar 15 2010 
02:19 Jul 21, 2012
Jkt 019200
PO 00000
Frm 00010
Fmt 6652
Sfmt 6201
E:\BILLS\H6157.IH
H6157
rfrederick on DSK6VPTVN1PROD with BILLS
‘‘PART W—PROGRAMS RELATING TO PALLIATIVE 
CARE 
‘‘SEC. 399OO. QUALITY OF LIFE PATIENT AND PROFES-
SIONAL AWARENESS GRANTS PROGRAM INI-
TIATIVE. 
‘‘(a) IN GENERAL.—Not later than 6 months after 
the date of the submission of the report by the Patient- 
Centered Health Care and Quality of Life Stakeholder 
Strategic Summit under section 3(e) of the Patient Cen-
tered Quality Care for Life Act, the Secretary, through 
the Director of the Centers for Disease Control and Pre-
vention, shall establish a national quality of life education 
and awareness grants program initiative for seriously ill 
patients, families of such patients, and health profes-
sionals who treat such patients for the purposes of encour-
aging an increased demand for and delivery of integrated 
and patient-centered care for managing pain and symp-
toms of such patients and improving the quality of life 
of such patients. Under the initiative, the Secretary shall, 
subject to subsection (h), award competitive grants to eli-
gible entities described in subsection (b) to develop new 
and expand existing information, resources, and commu-
nication materials about symptom management and other 
aspects of patient-centered care as an integral part of 
quality care for serious illnesses such as cancer; heart, 
renal and liver failure; lung disease; and Alzheimer’s dis-
VerDate Mar 15 2010 
02:19 Jul 21, 2012
Jkt 019200
PO 00000
Frm 00011
Fmt 6652
Sfmt 6201
E:\BILLS\H6157.IH
H6157
rfrederick on DSK6VPTVN1PROD with BILLS
ease and related dementias. Such materials shall be pre-
sented in a variety of formats (such as online, print, and 
public service announcement). 
‘‘(b) ELIGIBLE ENTITIES.—For purposes of this sec-
tion, an eligible entity includes only a State health depart-
ment, community health center, State or territory pro-
gram supported by the National Comprehensive Cancer 
Control Program of the Centers for Disease Control and 
Prevention, health profession school, chronic disease or 
cancer center, academic medical center, physician practice, 
home health care agency, palliative care or psychosocial 
care team (as defined in subsection (g)), hospice program, 
patient non-profit organization (as defined in subsection 
(g)), clinical pastoral education program, long-term care 
facility, faith community organization, or other public or 
private entity or organization addressing patient-centered 
care and quality of life concerns of seriously ill patients. 
‘‘(c) APPLICATION.—To be eligible to receive a grant 
under this section, an entity shall submit to the Secretary 
an application at such time, in such manner, and con-
taining such information as the Director may require, in-
cluding assurances that the entity will— 
‘‘(1) evaluate programs carried out by the enti-
ty through a grant provided under this section; 
VerDate Mar 15 2010 
02:19 Jul 21, 2012
Jkt 019200
PO 00000
Frm 00012
Fmt 6652
Sfmt 6201
E:\BILLS\H6157.IH
H6157
rfrederick on DSK6VPTVN1PROD with BILLS
‘‘(2) submit to the Secretary a report on the 
findings of such evaluations; and 
‘‘(3) coordinate the dissemination of such find-
ings with the Secretary. 
‘‘(d) USE OF FUNDS.—An entity awarded a grant 
under this section shall use such grant to carry out pro-
grams described in subsection (e), for patients and fami-
lies of such patients that further the purposes described 
in subsection (a). 
‘‘(e) PROGRAMS.—Programs described in this sub-
section, for which a grant awarded under this section may 
be used, include programs to— 
‘‘(1) navigate the health system, including as-
sistance to patients with finding health professionals 
to support quality of life needs, care decisionmaking 
and coordination, and transitions across care set-
tings; 
‘‘(2) provide general advocacy on behalf of pa-
tients and survivors to provide patients information 
to help them effectively communicate with health 
care providers about pain, physical and psychosocial 
symptoms, and barriers they are facing in adhering 
to curative or disease-directed treatments; 
‘‘(3) encourage health professionals to request 
coordinated patient-centered care consults for pa-
VerDate Mar 15 2010 
02:19 Jul 21, 2012
Jkt 019200
PO 00000
Frm 00013
Fmt 6652
Sfmt 6201
E:\BILLS\H6157.IH
H6157
rfrederick on DSK6VPTVN1PROD with BILLS
tients that are integrated alongside disease directed 
treatment in various care settings; and 
‘‘(4) collect and analyze data related to the ef-
fectiveness of the initiative under subsection (a). 
‘‘(f) PRIORITY.—In carrying out the grant program 
under this section, the Secretary shall give priority to ap-
plications that include an emphasis on addressing out-
reach efforts for seriously ill patients who are among 
medically underserved populations (as defined in section 
1302(7)) and families of such patients or health profes-
sionals serving medically underserved populations. Such 
populations would include pediatric patients, young adult 
and adolescent patients, racial and ethnic minority popu-
lations, and other priority populations specified by the 
Secretary. 
‘‘(g) DEFINITIONS.—For purposes of this section: 
‘‘(1) PSYCHOSOCIAL
CARE
TEAM.—The term 
‘psychosocial care team’ means health professionals 
focused on addressing social and emotional concerns 
of serious illness, and may include professionals such 
as 
social 
workers, 
psychiatrists, 
psychologists, 
nurses, child life specialists, teachers, chaplains, 
spiritual counselors, physical and occupational thera-
pists, nutritionists, integrative medicine specialists, 
VerDate Mar 15 2010 
02:19 Jul 21, 2012
Jkt 019200
PO 00000
Frm 00014
Fmt 6652
Sfmt 6201
E:\BILLS\H6157.IH
H6157
rfrederick on DSK6VPTVN1PROD with BILLS
patient service coordinators, patient navigators, and 
patient representatives. 
‘‘(2) PATIENT
NON-PROFIT
ORGANIZATION.— 
The term ‘patient non-profit organization’ means a 
nonprofit entity primarily engaged in raising funds 
for health-related research, such as disease preven-
tion, health education, and patient services. 
‘‘(h) AUTHORIZATION OF APPROPRIATIONS.—There 
is authorized to be appropriated to carry out this section 
such sums as are necessary.’’. 
SEC. 5. PROFESSIONAL WORKFORCE TRAINING GRANTS 
PROGRAM INITIATIVE. 
Part W of title III of the Public Health Service Act, 
as added by section 4, is amended by adding at the end 
the following new section: 
‘‘SEC. 399OO–1. PROFESSIONAL WORKFORCE TRAINING 
GRANTS PROGRAM INITIATIVE. 
‘‘(a) INITIATIVE.— 
‘‘(1) IN GENERAL.—Not later than 6 months 
after the date of the submission of the report by the 
Patient-Centered Health Care and Quality of Life 
Stakeholder Strategic Summit under section 3(e) of 
the Patient Centered Quality Care for Life Act, the 
Secretary, through the Administrator of the Health 
Resources and Services Administration, shall estab-
VerDate Mar 15 2010 
02:19 Jul 21, 2012
Jkt 019200
PO 00000
Frm 00015
Fmt 6652
Sfmt 6201
E:\BILLS\H6157.IH
H6157
rfrederick on DSK6VPTVN1PROD with BILLS
lish a health care professional workforce training 
grants program initiative for the purposes of pro-
moting and enhancing symptom assessment and 
management, communications skills, coordinated pa-
tient-centered care, and other quality of life focused 
clinical core competencies (as described in paragraph 
(2)) across all clinical specialties that serve seriously 
ill patients and patients with multiple or complex 
chronic diseases, such as patients with cancer; heart, 
renal, and liver failure; lung disease; and Alz-
heimer’s disease and related dementias. Under such 
initiative, the Secretary shall, subject to subsection 
(i), award competitive grants to eligible entities to 
provide evidence-based training and develop new 
training for health professionals, including physi-
cians, nurses, social workers, and professional chap-
lains for the purposes described in the previous sen-
tence. 
‘‘(2) QUALITY
OF
LIFE
FOCUSED
CLINICAL 
CORE COMPETENCIES DESCRIBED.—For purposes of 
paragraph (1), quality of life focused clinical core 
competencies include, at a minimum, the assessment 
and management of physical, psychological, and 
spiritual symptoms; establishment of patient-cen-
tered goals of care; support to patient and family 
VerDate Mar 15 2010 
02:19 Jul 21, 2012
Jkt 019200
PO 00000
Frm 00016
Fmt 6652
Sfmt 6201
E:\BILLS\H6157.IH
H6157
rfrederick on DSK6VPTVN1PROD with BILLS
caregivers; and management of transitions across 
care sites. 
‘‘(b) ELIGIBLE ENTITIES.—For purposes of sub-
section (a), an eligible entity is an entity described in sec-
tion 399OO(b). 
‘‘(c) APPLICATION.—To be eligible to receive a grant 
under this section, an entity shall submit to the Secretary 
an application at such time, in such manner, and con-
taining such information as the Secretary may require, in-
cluding assurances that the entity will— 
‘‘(1) evaluate programs carried out by the enti-
ty through the grant provided under this section; 
‘‘(2) submit to the Secretary a report on the 
findings of such evaluations; and 
‘‘(3) coordinate the dissemination of such find-
ings with the Secretary. 
‘‘(d) USE OF FUNDS.—An entity awarded a grant 
under this section shall use such grant to carry out pro-
grams described in subsection (e) to train health care pro-
fessionals described in subsection (a)(1) for the purposes 
described in such subsection. 
‘‘(e) PROGRAMS.—Programs described in this sub-
section, for which a grant awarded under this section may 
be used, include programs to— 
VerDate Mar 15 2010 
02:19 Jul 21, 2012
Jkt 019200
PO 00000
Frm 00017
Fmt 6652
Sfmt 6201
E:\BILLS\H6157.IH
H6157
rfrederick on DSK6VPTVN1PROD with BILLS
‘‘(1) enhance health professional communication 
skills in caring for seriously ill patients and sur-
vivors, establishing goals of care, and tailoring treat-
ments; 
‘‘(2) improve health profession identification of 
patient populations that benefit from coordinated 
palliative care and appropriate referral of patients 
for consultations with specialized interdisciplinary 
palliative care teams; 
‘‘(3) improve health professional skills in symp-
toms assessment and management, developing com-
prehensive care coordination and discharge plans to 
support transitions across care settings, managing 
patients with complex or multiple chronic conditions, 
and preparing survivorship care plans; 
‘‘(4) promote quality of life focused clinical core 
competencies (as described in subsection (a)(2)) 
across all clinical specialties serving seriously ill pa-
tients; 
‘‘(5) provide technical assistance to hospitals 
and other care settings to establish coordinated pal-
liative care teams; 
‘‘(6) create and expand coordinated palliative 
care leadership centers (as defined in subsection 
(h)); 
VerDate Mar 15 2010 
02:19 Jul 21, 2012
Jkt 019200
PO 00000
Frm 00018
Fmt 6652
Sfmt 6201
E:\BILLS\H6157.IH
H6157
rfrederick on DSK6VPTVN1PROD with BILLS
‘‘(7) provide mentoring and training to health 
professionals; 
‘‘(8) improve cultural sensitivity communication 
and patient care for minority and medically under-
served populations, including by addressing the par-
ticular needs of children, adolescents, and families of 
such children and adolescents; racial and ethnic 
groups; and other medically underserved patient and 
survivor populations; and 
‘‘(9) collect and analyze data related to the ef-
fectiveness of health professional education and 
training efforts carried out pursuant to this section. 
‘‘(f) PRIORITY.—In carrying out the grant program 
under this section, the Secretary shall give priority to ap-
plications that include an emphasis on addressing out-
reach efforts for seriously ill patients who are among 
medically underserved populations (as defined in section 
1302(7)) and families of such patients or health profes-
sionals serving medically underserved populations. Such 
populations would include pediatric patients, young adult 
and adolescent patients, racial and ethnic minority popu-
lations, and other priority populations specified by the 
Secretary. 
‘‘(g) STUDY.—Not later than one year after the date 
of the enactment of the Patient Centered Quality Care for 
VerDate Mar 15 2010 
02:19 Jul 21, 2012
Jkt 019200
PO 00000
Frm 00019
Fmt 6652
Sfmt 6201
E:\BILLS\H6157.IH
H6157
rfrederick on DSK6VPTVN1PROD with BILLS
Life Act, the Secretary shall update and expand the Sep-
tember 2002 report of the Health Resources and Services 
Administration, titled ‘The Supply, Demand and Use of 
Palliative Care Physicians in the United States’. Such up-
date and expansion shall be based on an examination of 
workforce trends, workforce capacity, and training needs 
for palliative medicine physicians, physician assistants, 
nurse practitioners, and other palliative care team mem-
bers in all care settings in the United States, as well as 
training needs for other medical specialists and non-physi-
cian clinicians. 
‘‘(h) PALLIATIVE CARE LEADERSHIP CENTER DE-
FINED.—For purposes of this section, the term ‘palliative 
care leadership center’ means a center— 
‘‘(1) that trains hospital palliative care pro-
grams; 
‘‘(2) that provides intensive operational training 
and mentoring for palliative care programs at every 
stage of development and growth; and 
‘‘(3) that provides training oriented to teams 
rather than individuals, and involves participation by 
teams of hospital and hospice health care profes-
sionals involved in starting or running a palliative 
care program, including physicians, nurses, social 
workers, administrators and financial managers. 
VerDate Mar 15 2010 
02:19 Jul 21, 2012
Jkt 019200
PO 00000
Frm 00020
Fmt 6652
Sfmt 6201
E:\BILLS\H6157.IH
H6157
rfrederick on DSK6VPTVN1PROD with BILLS
quality of life and survivorship’’ after ‘‘or national 
centers’’. 
(2) EFFECTIVE DATE.—The amendment made 
by paragraph (1) shall apply with respect to reports 
required on or after January 1, 2013. 
Æ 
VerDate Mar 15 2010 
02:19 Jul 21, 2012
Jkt 019200
PO 00000
Frm 00026
Fmt 6652
Sfmt 6301
E:\BILLS\H6157.IH
H6157
rfrederick on DSK6VPTVN1PROD with BILLS