[Congressional Bills 113th Congress]
[From the U.S. Government Publishing Office]
[H.R. 1666 Introduced in House (IH)]

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 
                   research, 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.

    This Act may be cited as the ``Patient Centered Quality Care for 
Life Act''.

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, characterized by untreated 
        symptoms, unmet psychosocial and personal care needs, high 
        caregiver burden, 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 caregivers 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 integrating symptom management 
        alongside disease-directed 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.
            (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 serious 
        illness, and can be provided together with curative treatment.
            (5) Medical teams that help patients manage pain and stress 
        during, alongside, and after treatment provide patients with 
        better quality of life. Evidence-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, 
        socialize, 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 commissioned by the 
        American Cancer Society Cancer Action 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 having 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 Resources Service 
        Administration (HRSA) in 2002 projected significant shortfalls 
        in the number of palliative medicine specialists in the United 
        States and called for increased education and training in 
        symptom assessment and management and other palliative care 
        core competencies across all clinical specialties serving 
        seriously ill patients. Several Institute of Medicine cancer 
        reports, including on palliative care in 2001, survivorship in 
        2006, psychosocial care in 2007, and pain in 2011 have also 
        consistently signaled the need for skills training to improve 
        health professional communication with patients and families 
        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 providing 
        patient-centered health care that integrates symptom management 
        and other aspects of coordinated or palliative care; and
            (2) identify strategic solutions for collectively 
        addressing quality of life concerns for the rapidly expanding 
        population of patients and survivors facing serious, complex, 
        and chronic illness in the United States and for the families 
        of such patients and survivors.
    (b) Participants.--The Summit shall include representatives 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 National 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
                    (E) other professionals as deemed appropriate 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 improve 
        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 
        nominations, appoint representatives described in paragraph 
        (2)(B).
            (2) Composition.--The Summit Steering Committee shall 
        consist of at least the following members:
                    (A) Members from federal agencies.--
                            (i) The Secretary, who will serve as chair 
                        of the Committee.
                            (ii) Four representatives from Federal 
                        agencies described in subsection (b) (or any 
                        other Federal agency deemed appropriate by the 
                        Secretary), to be appointed by the Secretary.
                    (B) Members representing stakeholder entities.--
                            (i) Six representatives of health 
                        professionals (with each of such 6 
                        representatives 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 
                        communities.
                            (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, medical specialists, and other 
        health professionals and seriously ill patients and families of 
        such patients to ensure that symptoms are managed and other 
        quality 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 integrated, 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, surveillance, health 
        information technology, workforce training, delivery of care, 
        and communication activities required to collectively address 
        barriers to achieving integrated palliative care for seriously 
        ill patients in all care settings. Such agenda shall include 
        strategies for reducing disparities among medically underserved 
        populations.
    (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 Committee on Health, Education, Labor, and Pensions of the Senate a 
report on the recommendations made by the participants of the Summit 
and shall make such recommendations available to the public.
    (f) Seriously Ill Patient Defined.--For purposes of this Act, the 
term ``seriously ill patient'' means an individual who has a serious 
health condition (as defined 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:

             ``PART W--PROGRAMS RELATING TO PALLIATIVE CARE

``SEC. 399OO. QUALITY OF LIFE PATIENT AND PROFESSIONAL AWARENESS GRANTS 
              PROGRAM INITIATIVE.

    ``(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 Centered Quality Care for Life Act, the Secretary, through the 
Director of the Centers for Disease Control and Prevention, shall 
establish a national quality of life education and awareness grants 
program initiative for seriously ill patients, families of such 
patients, and health professionals who treat such patients for the 
purposes of encouraging an increased demand for and delivery of 
integrated and patient-centered care for managing pain and symptoms 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 eligible entities described in subsection (b) to 
develop new and expand existing information, resources, and 
communication 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 disease and related dementias. Such materials shall be 
presented in a variety of formats (such as online, print, and public 
service announcement).
    ``(b) Eligible Entities.--For purposes of this section, an eligible 
entity includes only a State health department, community health 
center, State or territory program 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 containing such information as the Director 
may require, including assurances that the entity will--
            ``(1) evaluate programs carried out by the entity through a 
        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 findings with 
        the Secretary.
    ``(d) Use of Funds.--An entity awarded a grant under this section 
shall use such grant to carry out programs described in subsection (e), 
for patients and families of such patients that further the purposes 
described in subsection (a).
    ``(e) Programs.--Programs described in this subsection, for which a 
grant awarded under this section may be used, include programs to--
            ``(1) navigate the health system, including assistance to 
        patients with finding health professionals to support quality 
        of life needs, care decision-making and coordination, and 
        transitions across care settings;
            ``(2) provide general advocacy on behalf of patients 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 patients that are integrated 
        alongside disease directed treatment in various care settings; 
        and
            ``(4) collect and analyze data related to the effectiveness 
        of the initiative under subsection (a).
    ``(f) Priority.--In carrying out the grant program under this 
section, the Secretary shall give priority to applications that include 
an emphasis on addressing outreach efforts for seriously ill patients 
who are among medically underserved populations (as defined in section 
1302(7)) and families of such patients or health professionals serving 
medically underserved populations. Such populations would include 
pediatric patients, young adult and adolescent patients, racial and 
ethnic minority populations, 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 
        therapists, nutritionists, integrative medicine specialists, 
        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 prevention, 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 establish a health 
        care professional workforce training grants program initiative 
        for the purposes of promoting and enhancing symptom assessment 
        and management, communications skills, coordinated patient-
        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 Alzheimer'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 physicians, nurses, social workers, 
        and professional chaplains for the purposes described in the 
        previous sentence.
            ``(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-centered goals of 
        care; support to patient and family caregivers; and management 
        of transitions across care sites.
    ``(b) Eligible Entities.--For purposes of subsection (a), an 
eligible entity is an entity described in section 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 containing such information as the Secretary 
may require, including assurances that the entity will--
            ``(1) evaluate programs carried out by the entity 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 findings with 
        the Secretary.
    ``(d) Use of Funds.--An entity awarded a grant under this section 
shall use such grant to carry out programs described in subsection (e) 
to train health care professionals described in subsection (a)(1) for 
the purposes described in such subsection.
    ``(e) Programs.--Programs described in this subsection, for which a 
grant awarded under this section may be used, include programs to--
            ``(1) enhance health professional communication skills in 
        caring for seriously ill patients and survivors, establishing 
        goals of care, and tailoring treatments;
            ``(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 symptoms 
        assessment and management, developing comprehensive 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 patients;
            ``(5) provide technical assistance to hospitals and other 
        care settings to establish coordinated palliative care teams;
            ``(6) create and expand coordinated palliative care 
        leadership centers (as defined in subsection (h));
            ``(7) provide mentoring and training to health 
        professionals;
            ``(8) improve cultural sensitivity communication and 
        patient care for minority and medically underserved 
        populations, including by addressing the particular 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 effectiveness 
        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 applications that include 
an emphasis on addressing outreach efforts for seriously ill patients 
who are among medically underserved populations (as defined in section 
1302(7)) and families of such patients or health professionals serving 
medically underserved populations. Such populations would include 
pediatric patients, young adult and adolescent patients, racial and 
ethnic minority populations, 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 Life Act, the 
Secretary shall update and expand the September 2002 report of the 
Health Resources and Services Administration, titled `The Supply, 
Demand and Use of Palliative Care Physicians in the United States'. 
Such update 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 members in all care settings in the United States, 
as well as training needs for other medical specialists and non-
physician clinicians.
    ``(h) Palliative Care Leadership Center Defined.--For purposes of 
this section, the term `palliative care leadership center' means a 
center--
            ``(1) that trains hospital palliative care programs;
            ``(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 professionals involved in starting or 
        running a palliative care program, including physicians, 
        nurses, social workers, administrators and financial managers.
    ``(i) 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 2019.''.

SEC. 6. QUALITY OF LIFE CROSS-AGENCY ADVISORY COMMITTEE.

    Part W of title III of the Public Health Service Act, as added by 
section 4 and amended by section 5, is further amended by adding at the 
end the following new section:

``SEC. 399OO-2. QUALITY OF LIFE CROSS-AGENCY ADVISORY COMMITTEE.

    ``(a) Establishment.--Not later than 90 days after the date of the 
enactment of this section and subject to subsection (e), the Secretary 
shall establish a Quality of Life Cross-Agency Advisory Committee (in 
this section to be referred to as the `Advisory Committee') to advise, 
coordinate, and assist the Centers for Disease Control and Prevention 
and the Health Resources and Services Administration in creating and 
conducting the national quality of life education and awareness 
initiative under section 399OO and the health care professional 
workforce training initiative under section 399OO-1 and disseminate 
findings that have been identified from such initiatives for cross 
agency implementation of best practices.
    ``(b) Membership.--The Advisory Committee shall be composed of 
members who shall be appointed by the Secretary and shall include 
representatives of--
            ``(1) 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 National Institutes of Health;
            ``(2) the Department of Veterans Affairs;
            ``(3) the Department of Defense;
            ``(4) public and private organizations with expertise in 
        patient-centered care, palliative care, psychosocial care, and 
        symptom management and survivorship; and
            ``(5) such other representatives as the Secretary deems 
        necessary.
    ``(c) Duties.--The Advisory Committee shall--
            ``(1) evaluate the results of the programs funded by the 
        grants awarded under section 399OO(b) and under section 399OO-
        1(b);
            ``(2) coordinate and implement a cross-agency strategic 
        plan, with respect to the agencies specified in subsection (b), 
        to disseminate findings from such programs;
            ``(3) advise the Secretary of Health and Human Services on 
        strategies for disseminating across agencies specified in 
        subsection (b) recommendations from the National Action Agenda 
        described in section 3(c)(1) of the Patient Centered Quality 
        Care for Life Act;
            ``(4) consider and summarize recent advances achieved in 
        symptom management and survivorship research relevant to the 
        goals of this part and make recommendations to the Director of 
        the National Institutes of Health on gaps in basic, clinical, 
        behavioral, or other research required to achieve further 
        improvements in care to support quality of life and 
        survivorship;
            ``(5) develop a strategy for developing new and enhancing 
        health surveillance tools used to track symptoms, late effects, 
        and quality care trends over time, including national surveys 
        of the overall population of the United States, such as the 
        National Health Interview Survey and the Behavioral Risk Factor 
        Surveillance System conducted by the Centers for Disease 
        Control and Prevention and the Health Information National 
        Trends Survey conducted by the National Institutes of Health, 
        as well as administrative databases and disease registries such 
        as databases of the Centers for Medicare & Medicaid Services, 
        the Surveillance Epidemiology and End Results (SEER) cancer 
        registries program of the National Cancer Institute, the SEER-
        Medicare Linked Database of the National Cancer Institute, and 
        the National Program of Cancer Registries of the Centers for 
        Disease Control and Prevention; and
            ``(6) make appropriate updates and addendums annually to 
        the National Action Agenda.
    ``(d) Meetings.--The Advisory Committee shall meet at least once a 
year.
    ``(e) Authorization of Appropriations.--There are authorized to be 
appropriated to carry out this section such sums as are necessary for 
each of the fiscal years 2014 through 2019.''.

SEC. 7. ENHANCING RESEARCH IN SUPPORT OF PATIENT QUALITY OF LIFE.

    (a) In General.--Part W of title III of the Public Health Service 
Act, as added by section 4 and amended by sections 5 and 6, is further 
amended by adding at the end the following new section:

``SEC. 399OO-3. ENHANCING RESEARCH IN SUPPORT OF PATIENT QUALITY OF 
              LIFE.

    ``(a) In General.--The Secretary, acting through the Director of 
the National Institutes of Health, shall develop and implement a 
strategy to be applied across the institutes and centers of the 
National Institutes of Health that is in accordance with 
recommendations of the Advisory Committee established under section 
399OO-2 to expand national research programs in symptom management, 
palliative, psychosocial, and survivorship care.
    ``(b) Research Programs.--The Director of the National Institutes 
of Health shall expand and intensify research programs in symptom 
management and palliative, psychosocial, and survivorship care and 
research programs that address the quality of life needs for the 
rapidly growing population in the United States of seriously ill 
patient (with illnesses such as cancer; heart, renal and live failure; 
lung disease; and Alzheimer's disease and related dementias).''.
    (b) Expanding Trans-NIH Research Reporting to Include Quality of 
Life and Survivorship Research.--
            (1) In general.--Section 402A(c)(2)(B)(i) of the Public 
        Health Service Act (42 U.S.C. 282a(c)(2)(B)(i)) is amended by 
        inserting ``and for conducting or supporting research with 
        respect to 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, 2014.
                                 <all>