Read the document

Patient Centered Quality Care for Life Act

1. Short title
- This Act may be cited as the "Patient Centered Quality Care for Life Life Act".Act".
2. Findings
- Congress finds the following:
- (1) Studies demonstrate that, despite very high health expenditures, seriously ill patients are not satisfied with the qualityuality of their medical care, characterized by untreated symptoms, unmet psychosocialsocial and personal care needs, high caregiver burden, and low patient and familyfamily satisfaction.ction.
- (2) Health care delivery systems in the United States are not set up to address the complexomplex chronic care needs that are increasingly becoming the norm for more patientsients and survivors (and family caregivers of such patients and survivors) facingcing serious illness like cancer; heart, renal and liver failure; lung disease;ease; Alzheimer’s disease and related dementias, which are care needs that can spann span over many years or even decades and impose significant burdens on familyily caregivers.ers.
- (3) Public outreach and education for seriously ill patients, survivors, and their families toies to improve awareness of and demand for the benefits of integrating symptomymptom management alongside disease-directed treatment is essential to improving theg the quality of life of patients, survivors, and their families, which should be an an integral element of quality health care. care.
- (4) Palliative care is specialized medical care for seriously ill patients. This type of care is focused on providing patientstients with relief from the symptoms, pain, and stresses of a serious illness—whateveratever the diagnosis. The goal is to improve quality of life for both the patient andt and the family. Palliative care is provided by a team of doctors, nurses, and other other specialists who work with a patient’s other doctors to provide an extra layerlayer of support. Palliative care is appropriate at any age and at any stage in an a serious illness, and can be provided together with curative treatment.ment.
- (5) Medical teams that help patients manage pain and stress during, alongside, and after treatmentent provide patients with better quality of life. Evidence-based research showsshows that such care may also lead to increased survival. These teams also reduceeduce preventable suffering and caregiver breakdown.down.
- (6) Patients receiving palliative or coordinated care feel better and are more likely to keep theireir doctor’s appointments, complete their treatment, and take their medications. If. If patient disease-related and treatment-related symptoms such as pain, nausea,usea, depression, fatigue, and breathlessness are managed, patients are more likelykely to eat well, exercise, socialize, and take pleasure in things that can helpelp them feel better emotionally and physically and help them fight chronicronic illness.ness.
- (7) A 2010 Harris Interactive poll commissioned by the American Cancer Society Cancerncer Action Network (ACSCAN) among cancer patients, survivors, and their familyamily caregivers found that fewer than one-third of the patients and survivors weres were asked by their doctor about what is important to such patients and survivors in in terms of quality of life. In that same poll, fewer than one-third of thef the patients and survivors were asked if they were having stress, depression,ion, anxiety, or other emotional concerns related to the cancer or discussed ways to to help with those emotional effects, though more than one-third of such patientsients and survivors said they had these emotional concerns.cerns.
- (8) A report commissioned by the Health Resources Service Administration (HRSA) in 2002 projected significantficant shortfalls in the number of palliative medicine specialists in the Unitedted States and called for increased education and training in symptom assessmentent and management and other palliative care core competencies across all clinicalical specialties serving seriously ill patients. Several Institute of Medicinedicine cancer reports, including on palliative care in 2001, survivorship in 2006,06, psychosocial care in 2007, and pain in 2011 have also consistently signaled thed the need for skills training to improve health professional communication with with patients and families regarding symptoms, establishing goals of care, tailoringloring treatments to those goals, and other quality of life concerns.erns.
3. National patient-centered health care and quality of life stakeholder strategicegic summitsummit
- (a) Summit
  - Not later than one year after the date of the enactment of this section, thethe Secretary of Health and Human Services shall convene a Patient-Centered Healthh Care and Quality of Life Stakeholder Strategic Summit (in this Act to be be referred to as the "Summit") to be composed of individuals withh appropriate expertise to—o—
  - (1) analyze key health system barriers to providing patient-centered health care that integrates symptom management and other aspects of coordinated or palliative care; andnd
  - (2) identify strategic solutions for collectively addressing quality of life concerns for the rapidly expanding population of patients and survivors facing serious, complex, andand chronic illness in the United States and for the families of such patients andnd survivors.rs.
- (b) Participants
  - The Summit shall include representatives from at least the following:ng:
  - (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 Healthcaree Research and Quality, the Centers for Medicare e & Medicaid Services, and the National Institutes of Health;h;
    - (B) the Department of Veterans Affairs; andd
    - (C) the Department of Defense..
  - (2) Private organizations, including—ng—
    - (A) health professional organizations that represent physicians, nurses, pharmacists, and social workers;rs;
    - (B) patient non-profit organizations (as defined in section 4(g));
    - (C) private health insurance organizations;
    - (D) faith community representatives; andand
    - (E) other professionals as deemed appropriate by the Secretary..
- (c) Steering Committeetee
  - (1) In generalal
    - The Secretary shall establish a Summit Steering Committee to plan the Summit, coordinate participants of the Summit, develop an agendaa for the Summit that is in accordance with subsection (d), and draft a summaryy 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 shallall appoint the representatives described in paragraph (2)(A) and shall seekeek nominations from relevant stakeholders and, from such nominations, appointt representatives described in paragraph (2)(B).B).
  - (2) Composition
    - The Summit Steering Committee shall consist of at least the following members:rs:
    - (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 entitiess
      - (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 thethe following:
  - (1) Improving communication and coordination of health care among primary care providers,, medical specialists, and other health professionals and seriously ill patientsts and families of such patients to ensure that symptoms are managed and otherher quality of life needs are met to support the continued functioning andnd well-being of such patients.ts.
  - (2) Examining the appropriate roles of both physician and non-physician professionals (such as nurse practitioners,rs, clinical social workers, physician assistants, and other patient or survivoror navigators or case coordinators) in strengthening access to integrated,, coordinated, or palliative care across care settings for all seriously illll patients and families of such patients.ts.
  - (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 ofof care, and communication activities required to collectively address barriers too achieving integrated palliative care for seriously ill patients in all carere settings. Such agenda shall include strategies for reducing disparities amongng 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 onn the recommendations made by the participants of the Summit and shall make such recommendations available to the public.ic.
- (f) Seriously ill patient definedefined
  - 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 of 1993 (26 U.S.C. 2911(11)).).
- (g) Authorization of appropriationsons
  - There is authorized to be appropriated to carry out this section such sums as are necessary for each of the fiscal years 2014014 through 2018.
4. Quality of life patient and professional awareness grants program initiativeative
- Title III of the Public Health Service Act (42 U.S.C. 241 et seq.) is amended by adding at the end the following newnew part:rt:
  - "
  - W Programs Relating to Palliative CareCare
    - 399OO. Quality of life patient and professional awareness grants program initiativeiative
      - (a) In generalal
        
        Not later than 6 months after the date of the submission of the report by the Patient-Centereded Health Care and Quality of Life Stakeholder Strategic Summit under section 3(e)) of the Patient Centered Quality Care for Lifeife Act, the Secretary, through the Director of the Centers forr Disease Control and Prevention, shall establish a national quality of lifeife education and awareness grants program initiative for seriously ill patients, families of such patients, and health professionals who treat such patients forr the purposes of encouraging an increased demand for and delivery of integratedted and patient-centered care for managing pain and symptoms of such patients and improving the quality of life of such patients. Under the initiative, thee Secretary shall, subject to subsection (h), award competitive grants too eligible entities described in subsection (b) to develop new and expandand existing information, resources, and communication materials about symptomtom management and other aspects of patient-centered care as an integral part of quality care for serious illnesses such as cancer; heart, renal and liverer failure; lung disease; and Alzheimer’s disease and related dementias. Suchh 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 oror territory program supported by the National Comprehensive Cancer Control Program of the Centers for Disease Control and Prevention, health professionon school, chronic disease or cancer center, academic medical center, physicianan practice, home health care agency, palliative care or psychosocial care teamam (as defined in subsection (g)), hospice program, patient non-profitit organization (as defined in subsection (g)), clinical pastoral educationion program, long-term care facility, faith community organization, or other publicic or private entity or organization addressing patient-centered care and qualityity 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 suchch 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; andd
        
        (3) coordinate the dissemination of such findings with the Secretary.
      - (d) Use of fundsds
        
        An entity awarded a grant under this section shall use such grant to carry out programs described in subsection (e), for patients andand families of such patients that further the purposes described in subsectionn (a).a).
      - (e) Programs
        
        Programs described in this subsection, for which a grant awarded under this section mayay be used, include programs to—
        
        (1) navigate the health system, including assistance to patients with finding healthth professionals to support quality of life needs, care decision-making andand coordination, and transitions across care settings;s;
        
        (2) provide general advocacy on behalf of patients and survivors to provide patients information to to help them effectively communicate with health care providers about pain,in, physical and psychosocial symptoms, and barriers they are facing in adhering toto curative or disease-directed treatments;ts;
        
        (3) encourage health professionals to request coordinated patient-centered care consults foror patients that are integrated alongside disease directed treatment in variousous care settings; andnd
        
        (4) collect and analyze data related to the effectiveness of the initiative under subsectionion (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 outreachach efforts for seriously ill patients who are among medically underserveded populations (as defined in section 1302(7)) and families of such patients or health professionals serving medically underserved populations. Suchch populations would include pediatric patients, young adult and adolescentnt patients, racial and ethnic minority populations, and other priorityty populations specified by the Secretary.y.
      - (g) Definitions
        
        For purposes of this section:on:
        
        (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 organizationn
        
        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 areare necessary..
  - "
5. Professional workforce training grants program initiativetive
- Part W of title III of the Public Health Service Act, as added by section 4, is amended by adding at the end thed the following new section:tion:
  - "
  - 399OO–1. Professional workforce training grants program initiativeiative
    - (a) Initiative
      - (1) In generalal
        
        Not later than 6 months after the date of the submission of the report by the Patient-Centereded 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 thethe Administrator of the Health Resources and Services Administration, shalll establish a health care professional workforce training grants programam initiative for the purposes of promoting and enhancing symptom assessment and management, communications skills, coordinated patient-centered care, and otherr quality of life focused clinical core competencies (as described in paragraphaph (2)) across all clinical specialties that serve seriously ill patients andd patients with multiple or complex chronic diseases, such as patients with cancer; heart, renal, and liver failure; lung disease; and Alzheimer’s diseasee and related dementias. Under such initiative, the Secretary shall, subject to subsection (i), award competitive grants to eligible entities to providee evidence-based training and develop new training for health professionals,s, including physicians, nurses, social workers, and professional chaplains for the purposes described in the previous sentence.e.
      - (2) Quality of life focused clinical core competencies describedd
        
        For purposes of paragraph (1), quality of life focused clinical core competencies include, at a minimum, the assessmentt 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 entitiesies
      - 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 suchch 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; andd
      - (3) coordinate the dissemination of such findings with the Secretary.
    - (d) Use of fundsfunds
      - An entity awarded a grant under this section shall use such grant to carry out programs describedbed in subsection (e) to train health care professionals described in subsectionn (a)(1) for the purposes described in such subsection.n.
    - (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;ms;
      - (3) improve health professional skills in symptoms assessment and management, developing comprehensive care coordination and discharge plans to support transitionss across care settings, managing patients with complex or multiple chronic conditions, and preparing survivorship care plans;s;
      - (4) promote quality of life focused clinical core competencies (as described in subsection (a)(2)) across all clinicalal specialties serving seriously ill patients;;
      - (5) provide technical assistance to hospitals and other care settings to establish coordinatedd palliative care teams;s;
      - (6) create and expand coordinated palliative care leadership centers (as defined in subsectionn (h)););
      - (7) provide mentoring and training to health professionals;;
      - (8) improve cultural sensitivity communication and patient care for minority and medicallyly underserved populations, including by addressing the particular needs off children, adolescents, and families of such children and adolescents; racialal and ethnic groups; and other medically underserved patient and survivoror populations; andand
      - (9) collect and analyze data related to the effectiveness of health professional education andand 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 an emphasis on addressing outreach efforts for seriously ill patients who areare among medically underserved populations (as defined in section 1302(7)) and families of such patients or health professionals serving medically underservedved populations. Such populations would include pediatric patients, young adult andand adolescent patients, racial and ethnic minority populations, and other priorityity populations specified by the Secretary.ry.
    - (g) Study
      - Not later than one year after the date of the enactment of the Patient Centered Qualityy Care for Life Act, the Secretary shall update and expand thee September 2002 report of the Health Resources and Services Administration,n, titled "The Supply, Demand and Use of Palliative Care Physicians in the United States". Such update and expansion shall be based on an an examination of workforce trends, workforce capacity, and training needs for palliative medicine physicians, physician assistants, nurse practitioners, andand other palliative care team members in all care settings in the United States, as well as training needs for other medical specialists and non-physiciann clinicians..
    - (h) Palliative care leadership center definedined
      - For purposes of this section, the term palliative care leadershiphip center means a center——
      - (1) that trains hospital palliative care programs;ms;
      - (2) that provides intensive operational training and mentoring for palliative care programs att every stage of development and growth; andnd
      - (3) that provides training oriented to teams rather than individuals, and involves participationn by teams of hospital and hospice health care professionals involved in starting or running a palliative care program, including physicians, nurses, socialial workers, administrators and financial managers.
    - (i) Authorization of appropriationsons
      - There is authorized to be appropriated to carry out this section such sums as are necessary for each of the fiscal years 2014014 throughh 2019.19.
  - "
6. Quality of life cross-agency advisory committeeittee
- Part W of title III of the Public Health Service Act, as added by section 4 and amended by section 5, is further amendedended by adding at the end the following new section:tion:
  - "
  - 399OO–2. Quality of life cross-agency advisory committeettee
    - (a) Establishment
      - Not later than 90 days after the date of the enactment of this section and subject to subsection (e), the Secretaryry 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 thee Health Resources and Services Administration in creating and conducting thee national quality of life education and awareness initiative under section 399OO9OO and the health care professional workforce training initiative under sectionion 399OO–1 and disseminate findings that have been identified from suchch initiatives for cross agency implementation of best practices.s.
    - (b) Membership
      - The Advisory Committee shall be composed of members who shall be appointed by thethe Secretary and shall include representatives of——
      - (1) the Department of Health and Human Services, including from the Centers for Disease Control andd Prevention, the Health Resources and Services Administration, the Agency forr Healthcare Research and Quality, the Centers for Medicare e & Medicaid Services, and the National Institutes of Health;h;
      - (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; andand
      - (5) such other representatives as the Secretary deems necessary.
    - (c) Duties
      - The Advisory Committee shall—ll—
      - (1) evaluate the results of the programs funded by the grants awarded under section 399OO(b) andnd under section 399OO–1(b);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;ms;
      - (3) advise the Secretary of Health and Human Services on strategies for disseminating across agencies specified in subsection (b) recommendations from the National Actionn 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 survivorshipip research relevant to the goals of this part and make recommendations to thee Director of the National Institutes of Health on gaps in basic, clinical,al, behavioral, or other research required to achieve further improvements in caree 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 nationalal surveys of the overall population of the United States, such as the Nationall Health Interview Survey and the Behavioral Risk Factor Surveillance Systemem 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 Nationalnal Cancer Institute, the SEER–Medicare Linked Database of the National Cancerr Institute, and the National Program of Cancer Registries of the Centers for Disease Control and Prevention; andand
      - (6) make appropriate updates and addendums annually to the National Action Agenda.a.
    - (d) Meetings
      - The Advisory Committee shall meet at least once a year.
    - (e) Authorization of appropriationsons
      - There are authorized to be appropriated to carry out this section such sums as are necessary for each of the fiscal years 201414 throughh 2019.19.
  - "
7. Enhancing research in support of patient quality of lifeife
- (a) In generalneral
  - Part W of title III of the Public Health Service Act, as added by section 4 and amended by sectionsons 5 and 6, is further amended by adding at the end the following newew section:on:
    - "
    - 399OO–3. Enhancing research in support of patient quality of life life
      - (a) In generalal
        
        The Secretary, acting through the Director of the National Institutes of Health, shall develop andd implement a strategy to be applied across the institutes and centers of thehe National Institutes of Health that is in accordance with recommendations of thethe Advisory Committee established under section 399OO–2 to expand nationalnal research programs in symptom management, palliative, psychosocial, andand survivorship care.
      - (b) Research programs
        
        The Director of the National Institutes of Health shall expand and intensify research programs in in symptom management and palliative, psychosocial, and survivorship care andd research programs that address the quality of life needs for the rapidly growing population in the United States of seriously ill patient (withth 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 survivorshiporship researcharch
  - (1) In generalal
    - 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 conductingg or supporting research with respect to quality of life and survivorship"" after "or national centers"..
  - (2) Effective dateate
    - The amendment made by paragraph (1) shall apply with respect to reports required on or after January 1, 2014.4.