I 
113TH CONGRESS 
1ST SESSION H. R. 1666 
To create a patient-centered quality of care initiative for seriously ill patients 
through the establishment of a stakeholder strategic summit, quality 
of life education and awareness initiative, health care workforce training, 
an advisory committee, and palliative care focused research, and for 
other purposes. 
IN THE HOUSE OF REPRESENTATIVES 
APRIL 23, 2013 
Mr. CLEAVER (for himself and Mr. BACHUS) introduced the following bill; 
which was referred to the Committee on Energy and Commerce 
A BILL 
To create a patient-centered quality of care initiative for 
seriously ill patients through the establishment of a 
stakeholder strategic summit, quality of life education 
and awareness initiative, health care workforce training, 
an advisory committee, and palliative care focused re-
search, 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. 
This Act may be cited as the ‘‘Patient Centered Qual-
ity Care for Life Act’’. 
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SEC. 2. FINDINGS. 
Congress finds the following: 
(1) Studies demonstrate that, despite very high 
health expenditures, seriously ill patients are not 
satisfied with the quality of their medical care, char-
acterized by untreated symptoms, unmet psycho-
social and personal care needs, high caregiver bur-
den, and low patient and family satisfaction. 
(2) Health care delivery systems in the United 
States are not set up to address the complex chronic 
care needs that are increasingly becoming the norm 
for more patients and survivors (and family care-
givers of such patients and survivors) facing serious 
illness like cancer; heart, renal and liver failure; lung 
disease; Alzheimer’s disease and related dementias, 
which are care needs that can span over many years 
or even decades and impose significant burdens on 
family caregivers. 
(3) Public outreach and education for seriously 
ill patients, survivors, and their families to improve 
awareness of and demand for the benefits of inte-
grating symptom management alongside disease-di-
rected treatment is essential to improving the quality 
of life of patients, survivors, and their families, 
which should be an integral element of quality health 
care. 
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(4) Palliative care is specialized medical care 
for seriously ill patients. This type of care is focused 
on providing patients with relief from the symptoms, 
pain, and stresses of a serious illness—whatever the 
diagnosis. The goal is to improve quality of life for 
both the patient and the family. Palliative care is 
provided by a team of doctors, nurses, and other 
specialists who work with a patient’s other doctors 
to provide an extra layer of support. Palliative care 
is appropriate at any age and at any stage in a seri-
ous illness, and can be provided together with cura-
tive treatment. 
(5) Medical teams that help patients manage 
pain and stress during, alongside, and after treat-
ment provide patients with better quality of life. Evi-
dence-based research shows that such care may also 
lead to increased survival. These teams also reduce 
preventable suffering and caregiver breakdown. 
(6) Patients receiving palliative or coordinated 
care feel better and are more likely to keep their 
doctor’s appointments, complete their treatment, and 
take their medications. If patient disease-related and 
treatment-related symptoms such as pain, nausea, 
depression, fatigue, and breathlessness are managed, 
patients are more likely to eat well, exercise, social-
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ize, and take pleasure in things that can help them 
feel better emotionally and physically and help them 
fight chronic illness. 
(7) A 2010 Harris Interactive poll commis-
sioned by the American Cancer Society Cancer Ac-
tion Network (ACSCAN) among cancer patients, 
survivors, and their family caregivers found that 
fewer than one-third of the patients and survivors 
were asked by their doctor about what is important 
to such patients and survivors in terms of quality of 
life. In that same poll, fewer than one-third of the 
patients and survivors were asked if they were hav-
ing stress, depression, anxiety, or other emotional 
concerns related to the cancer or discussed ways to 
help with those emotional effects, though more than 
one-third of such patients and survivors said they 
had these emotional concerns. 
(8) A report commissioned by the Health Re-
sources Service Administration (HRSA) in 2002 
projected significant shortfalls in the number of pal-
liative medicine specialists in the United States and 
called for increased education and training in symp-
tom assessment and management and other pallia-
tive care core competencies across all clinical special-
ties serving seriously ill patients. Several Institute of 
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Medicine cancer reports, including on palliative care 
in 2001, survivorship in 2006, psychosocial care in 
2007, and pain in 2011 have also consistently sig-
naled the need for skills training to improve health 
professional communication with patients and fami-
lies regarding symptoms, establishing goals of care, 
tailoring treatments to those goals, and other quality 
of life concerns. 
SEC. 3. NATIONAL PATIENT-CENTERED HEALTH CARE AND 
QUALITY OF LIFE STAKEHOLDER STRATEGIC 
SUMMIT. 
(a) SUMMIT.—Not later than one year after the date 
of the enactment of this section, the Secretary of Health 
and Human Services shall convene a Patient-Centered 
Health Care and Quality of Life Stakeholder Strategic 
Summit (in this Act to be referred to as the ‘‘Summit’’) 
to be composed of individuals with appropriate expertise 
to— 
(1) analyze key health system barriers to pro-
viding patient-centered health care that integrates 
symptom management and other aspects of coordi-
nated or palliative care; and 
(2) identify strategic solutions for collectively 
addressing quality of life concerns for the rapidly ex-
panding population of patients and survivors facing 
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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 
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(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. 
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(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 
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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. 
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(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 
2014 through 2018. 
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: 
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‘‘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-
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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; 
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‘‘(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 decision-making 
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-
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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, 
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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-
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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 
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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— 
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‘‘(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)); 
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‘‘(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 
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