I 115th CONGRESS 1st Session H. R. 1676 IN THE HOUSE OF REPRESENTATIVES March 22, 2017 Mr. Engel (for himself, Mr. Reed , and Mr. Carter of Georgia ) introduced the following bill; which was referred to the Committee on Energy and Commerce A BILL To amend the Public Health Service Act to increase the number of permanent faculty in palliative care at accredited allopathic and osteopathic medical schools, nursing schools, social work schools, and other programs, including physician assistant education programs, to promote education and research in palliative care and hospice, and to support the development of faculty careers in academic palliative medicine.

1. Short title This Act may be cited as the Palliative Care and Hospice Education and Training Act . 2. Findings Congress makes the following findings: (1) Palliative care is interdisciplinary, patient- and family-centered health care for people with serious illnesses. This type of care is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness, whatever the diagnosis. The goal of palliative care is to relieve suffering and improve quality of life for both patients and their families. Palliative care is provided by a team of doctors, nurses, social workers, physician assistants, chaplains, and other specialists who work with a patient’s other health care providers to provide an extra layer of support, including assistance with difficult medical decisionmaking and coordination of care among specialists. Palliative care is appropriate at any age and at any stage in a serious illness, and can be provided together with curative treatment. Palliative care is not dependent on a life-limiting prognosis and may actually help an individual recover from illness by relieving symptoms, such as pain, anxiety, or loss of appetite, while undergoing sometimes difficult medical treatments or procedures, such as surgery or chemotherapy. (2) Hospice is palliative care for patients in their last year of life. Considered the model for quality compassionate care for individuals facing a life-limiting illness, hospice provides expert medical care, pain management, and emotional and spiritual support expressly tailored to the patient’s needs and wishes. In most cases, care is provided in the patient’s home but may also be provided in freestanding hospice centers, hospitals, nursing homes, and other long-term care facilities. In 2014, an estimated 1,600,000 to 1,700,000 patients received services from hospice, including non-Medicare beneficiaries. Nearly 48 percent of all Medicare decedents in 2014 received care from a hospice program. Hospice is a covered benefit under the Medicare program. There were 4,025 Medicare-certified hospices serving more than 1,300,000 Medicare beneficiaries in 2014. (3) Despite a high intensity of medical treatment, many seriously ill patients experience troubling symptoms, unmet psychological and personal care needs, and high caregiver burden. Numerous studies have shown that adding palliative care can improve pain and symptom control, quality of life, and family satisfaction with care. (4) Health care providers need better education about pain management and palliative care. Students graduating from medical, nursing and other health professional schools today have very little, if any, training in the core precepts of pain and symptom management, advance care planning, communication skills, and care coordination for patients with serious or life-threatening illness. Even for specialists, training is lacking. For example, the Accreditation Council for Graduate Medical Education requires oncology fellowship programs to integrate competence in palliative care into their curriculum and the American Society of Clinical Oncology has recommended the integration of palliative care services into standard oncology practice at the time a person is diagnosed with metastatic or advanced cancer. Yet a 2015 national survey found hematology/oncology fellows were inadequately prepared to provide palliative care to their patients. Less than half had a rotation in palliative care and 25 percent of fellows reported no explicit teaching on key skills such as assessing prognosis, conducting a family meeting to discuss treatment options, and referral to palliative care. (5) The American Board of Medical Specialties and the Accreditation Council for Graduate Medical Education provided formal subspecialty status for hospice and palliative medicine in 2006, and the Centers for Medicare & Medicaid Services recognized hospice and palliative medicine as a medical subspecialty in October of 2008. (6) As of February 2017, there were a total of 127 hospice and palliative medicine training programs accredited by the Accreditation Council for Graduate Medical Education. For the 2016–2017 academic year, these programs were training 327 physicians in hospice and palliative medicine. Some programs include an additional track in pediatrics, geriatrics, research, or public health. Fewer than a dozen of these ACGME-accredited training programs focus solely on pediatric palliative medicine though data show an increasing prevalence of children with complex chronic conditions who could benefit from such specialized care. (7) There is a large gap between the number of health care professionals with palliative care training and the number required to meet the needs of the growing population of individuals with serious or life-threatening illness. In 2015, 75 percent of U.S. hospitals with 50 or more beds had a palliative care program though not all these programs have in place the interdisciplinary team necessary to provide comprehensive, high-quality palliative care. Hospital data reported to the National Palliative Care Registry show that in 2015 only 44 percent of programs met national staffing standards set by the Joint Commission, even when including unfunded positions. Among the 56 percent of programs without complete interdisciplinary teams, 30 percent have no physician, 10 percent have no advanced practice registered nurse or RN, 54 percent have no social worker and 70 percent have no chaplain. Looking at just physician specialists, 2017 projections by the George Washington University Health Workforce Institute show that current training capacity for hospice and palliative medicine is not sufficient to provide hospital-based care and keep pace with growth in the population of adults over 65 years old. The shortages are exacerbated when considering the current rapid expansion of community-based palliative care, such as in outpatient and home-based settings. A separate survey of physicians in the field found that, if the rate of those entering and leaving hospice and palliative medicine maintains, there will be no more than 1 percent absolute growth in this physician workforce in 20 years, during which time the number of persons eligible for palliative care will grow by over 20 percent. The study’s authors project this will result in a ratio of one palliative medicine physician for every 26,000 seriously ill patients by 2030. (8) According to the National Academy of Medicine, there is a need for better understanding of the role of palliative care among both the public and professionals across the continuum of care so that hospice and palliative care can achieve their full potential for patients and their families . 3. Palliative care and hospice education and training (a) In general Part D of title VII of the Public Health Service Act ( 42 U.S.C. 294 et seq.) is amended by inserting after section 759 the following: 759A. Palliative care and hospice education and training (a) Palliative care and hospice education centers (1) In general The Secretary shall award grants or contracts under this section to entities described in paragraph (1), (3), or (4) of section 799B, and section 801(2), for the establishment or operation of Palliative Care and Hospice Education Centers that meet the requirements of paragraph (2). (2) Requirements A Palliative Care and Hospice Education Center meets the requirements of this paragraph if such Center— (A) improves the training of health professionals in palliative care, including residencies, traineeships, or fellowships; (B) develops and disseminates curricula relating to the palliative treatment of the complex health problems of individuals with serious or life-threatening illnesses; (C) supports the training and retraining of faculty to provide instruction in palliative care; (D) supports continuing education of health professionals who provide palliative care to patients with serious or life-threatening illness; (E) provides students (including residents, trainees, and fellows) with clinical training in palliative care in long-term care facilities, home care, hospices, chronic and acute disease hospitals, and ambulatory care centers; (F) establishes traineeships for individuals who are preparing for advanced education nursing degrees, social work degrees, or advanced degrees in physician assistant studies, with a focus in palliative care in long-term care facilities, home care, hospices, chronic and acute disease hospitals, and ambulatory care centers; and (G) does not duplicate the activities of existing education centers funded under this section or under section 753 or 865. (3) Expansion of existing centers Nothing in this section shall be construed to— (A) prevent the Secretary from providing grants to expand existing education centers, including geriatric education centers established under section 753 or 865, to provide for education and training focused specifically on palliative care, including for non-geriatric populations; or (B) limit the number of education centers that may be funded in a community. (b) Palliative medicine physician training (1) In general The Secretary may make grants to, and enter into contracts with, schools of medicine, schools of osteopathic medicine, teaching hospitals, and graduate medical education programs, for the purpose of providing support for projects that fund the training of physicians (including residents, trainees, and fellows) who plan to teach palliative medicine. (2) Requirements Each project for which a grant or contract is made under this subsection shall— (A) be staffed by full-time teaching physicians who have experience or training in palliative medicine; (B) be based in a hospice and palliative medicine fellowship program accredited by the Accreditation Council for Graduate Medical Education; (C) provide training in palliative medicine through a variety of service rotations, such as consultation services, acute care services, extended care facilities, ambulatory care and comprehensive evaluation units, hospice, home health, and community care programs; (D) develop specific performance-based measures to evaluate the competency of trainees; and (E) provide training in palliative medicine through one or both of the training options described in subparagraphs (A) and (B) of paragraph (3). (3) Training options The training options referred to in subparagraph (E) of paragraph (2) are as follows: (A) 1-year retraining programs in hospice and palliative medicine for physicians who are faculty at schools of medicine and osteopathic medicine, or others determined appropriate by the Secretary. (B) 1- or 2-year training programs that are designed to provide training in hospice and palliative medicine for physicians who have completed graduate medical education programs in any medical specialty leading to board eligibility in hospice and palliative medicine pursuant to the American Board of Medical Specialties. (4) Definitions For purposes of this subsection the term graduate medical education means a program sponsored by a school of medicine, a school of osteopathic medicine, a hospital, or a public or private institution that— (A) offers postgraduate medical training in the specialties and subspecialties of medicine; and (B) has been accredited by the Accreditation Council for Graduate Medical Education or the American Osteopathic Association through its Committee on Postdoctoral Training. (c) Palliative medicine and hospice academic career awards (1) Establishment of program The Secretary shall establish a program to provide awards, to be known as the Palliative Medicine and Hospice Academic Career Awards , to eligible individuals to promote the career development of such individuals as academic hospice and palliative care physicians. (2) Eligible individuals To be eligible to receive an award under paragraph (1), an individual shall— (A) be board certified or board eligible in hospice and palliative medicine; and (B) have a junior (non-tenured) faculty appointment at an accredited (as determined by the Secretary) school of medicine or osteopathic medicine. (3) Limitations No award under paragraph (1) may be made to an eligible individual unless the individual— (A) has submitted to the Secretary an application, at such time, in such manner, and containing such information as the Secretary may require, and the Secretary has approved such application; (B) provides, in such form and manner as the Secretary may require, assurances that the individual will meet the service requirement described in paragraph (6); and (C) provides, in such form and manner as the Secretary may require, assurances that the individual has a full-time faculty appointment in a health professions institution and documented commitment from such institution to spend a majority of the total funded time of such individual on teaching and developing skills in interdisciplinary education in palliative care. (4) Maintenance of effort An eligible individual who receives an award under paragraph (1) shall provide assurances to the Secretary that funds provided to the eligible individual under this subsection will be used only to supplement, not to supplant, the amount of Federal, State, and local funds otherwise expended by the eligible individual. (5) Amount and term (A) Amount The amount of an award under this subsection shall be equal to the award amount provided for under section 753(c)(5)(A) for the fiscal year involved. (B) Term The term of an award made under this subsection shall not exceed 5 years. (C) Payment to institution The Secretary shall make payments for awards under this subsection to institutions, including schools of medicine and osteopathic medicine. (6) Service requirement An individual who receives an award under this subsection shall provide training in palliative care and hospice, including the training of interdisciplinary teams of health care professionals. The provision of such training shall constitute a majority of the total funded obligations of such individual under the award. (d) Palliative care workforce development (1) In general The Secretary shall award grants or contracts under this subsection to entities that operate a Palliative Care and Hospice Education Center pursuant to subsection (a)(1). (2) Application To be eligible for an award under paragraph (1), an entity described in such paragraph shall submit to the Secretary an application at such time, in such manner, and containing such information as the Secretary may require. (3) Use of funds Amounts awarded under a grant or contract under paragraph (1) shall be used to carry out the fellowship program described in paragraph (4). (4) Fellowship program (A) In general Pursuant to paragraph (3), a Palliative Care and Hospice Education Center that receives an award under this subsection shall use such funds to offer short-term intensive courses (referred to in this subsection as a fellowship ) that focus on palliative care that provide supplemental training for faculty members in medical schools and other health professions schools with programs in psychology, pharmacy, nursing, social work, physician assistant education, chaplaincy, or other health disciplines, as approved by the Secretary. Such a fellowship shall be open to current faculty, and appropriately credentialed volunteer faculty and practitioners, who do not have formal training in palliative care, to upgrade their knowledge and clinical skills for the care of individuals with serious or life-threatening illness and to enhance their interdisciplinary and interprofessional teaching skills. (B) Location A fellowship under this paragraph shall be offered either at the Palliative Care and Hospice Education Center that is sponsoring the course, in collaboration with other Palliative Care and Hospice Education Centers, or at medical schools, schools of nursing, schools of pharmacy, schools of social work, schools of chaplaincy or pastoral care education, graduate programs in psychology, physician assistant education programs, or other health professions schools approved by the Secretary with which the Centers are affiliated. (C) Continuing education credit Participation in a fellowship under this paragraph shall be accepted with respect to complying with continuing health profession education requirements. As a condition of such acceptance, the recipient shall subsequently provide a minimum of 18 hours of voluntary instruction in palliative care content (that has been approved by a palliative care and hospice education center) to students or trainees in health-related educational, home, hospice, or long-term care settings. (5) Targets A Palliative Care and Hospice Education Center that receives an award under this subsection shall meet targets approved by the Secretary for providing palliative care training to a certain number of faculty or practitioners during the term of the award, as well as other parameters established by the Secretary. (6) Amount of award Each award under this subsection shall be in the amount of $150,000. Not more than 24 Palliative Care and Hospice Education Centers may receive an award under this subsection. (7) Maintenance of effort A Palliative Care and Hospice Education Center that receives an award under this subsection shall provide assurances to the Secretary that funds provided to the Center under the award will be used only to supplement, not to supplant, the amount of Federal, State, and local funds otherwise expended by such Center. (e) Palliative care and hospice career incentive awards (1) In general The Secretary shall award grants or contracts under this subsection to individuals described in paragraph (2) to foster greater interest among a variety of health professionals in entering the field of palliative care. (2) Eligible individuals To be eligible to receive an award under paragraph (1), an individual shall— (A) be an advanced practice nurse, a social worker, physician assistant, pharmacist, chaplain, or student of psychology who is pursuing a doctorate, masters, or other advanced degree with a focus in palliative care or related fields in an accredited health professions school; and (B) submit to the Secretary an application at such time, in such manner, and containing such information as the Secretary may require. (3) Conditions of award As a condition of receiving an award under this subsection, an individual shall agree that, following completion of the award period, the individual will teach or practice palliative care in health-related educational, home, hospice, or long-term care settings for a minimum of 5 years under guidelines established by the Secretary. (4) Payment to institution The Secretary shall make payments for awards under this subsection to institutions which include schools of medicine, osteopathic medicine, nursing, social work, psychology, chaplaincy or pastoral care education, dentistry, and pharmacy, or other allied health discipline in an accredited health professions school or program (such as a physician assistant education program) that is approved by the Secretary. (f) Authorization of appropriations There are authorized to be appropriated to carry out this section, $44,100,000 for each of the fiscal years 2018 through 2022. . (b) Effective date The amendment made by this section shall be effective beginning on the date that is 90 days after the date of enactment of this Act. 4. Hospice and palliative nursing (a) Preference for grants or awards for nursing workforce development projects Section 805 of the Public Health Service Act ( 42 U.S.C. 296d ) is amended— (1) by striking or help and inserting help ; and (2) by inserting the following before the period at the end: , or for education and training in hospice and palliative nursing . (b) Advanced education nursing grants Section 811 of the Public Health Service Act ( 42 U.S.C. 296j ) is amended— (1) in subsection (a)— (A) in paragraph (1), by striking and at the end; (B) by redesignating paragraph (2) as paragraph (3); and (C) by inserting after paragraph (1), the following new paragraph: (2) palliative care and hospice career incentive awards under section 759A(e); and ; and (2) in subsection (g)(2), by inserting or for education and training in hospice and palliative nursing after section 332 . (c) Nurse education, practice, and quality grants Section 831 of the Public Health Service Act ( 42 U.S.C. 296p ) is amended— (1) in subsection (a)— (A) by striking or at the end of paragraph (1); (B) by striking the period at the end of paragraph (2) and inserting ; or ; and (C) by adding at the end the following new paragraph: (3) education and training in hospice and palliative nursing. ; and (2) in subsection (b)(3), by inserting hospice and palliative nursing, after coordinated care, . (d) Nurse retention grants Section 831A of the Public Health Service Act ( 42 U.S.C. 296p–1 ) is amended— (1) in subsection (c)(2), by inserting , and to applicants with programs that include initiatives to train nurses in hospice and palliative nursing before the period; and (2) in subsection (d), by inserting , and to train nurses in hospice and palliative nursing before the period. (e) Additional palliative care and hospice education and training programs Part D of title VIII of the Public Health Service Act ( 42 U.S.C. 296p et seq.) is amended by adding at the end the following: 832. Palliative care and hospice education and training (a) Program authorized The Secretary shall award grants to eligible entities to develop and implement, in coordination with programs under section 759A, programs and initiatives to train and educate individuals in providing palliative care in health-related educational, hospice, home, or long-term care settings. (b) Use of funds An eligible entity that receives a grant under subsection (a) shall use funds under such grant to— (1) provide training to individuals who will provide palliative care in health-related educational, home, hospice, or long-term care settings; (2) develop and disseminate curricula relating to palliative care in health-related educational, home, hospice, or long-term care settings; (3) train faculty members in palliative care in health-related educational, home, hospice, or long-term care settings; or (4) provide continuing education to individuals who provide palliative care in health-related educational, home, hospice, or long-term care settings. (c) Application An eligible entity desiring a grant under subsection (a) shall submit an application to the Secretary at such time, in such manner, and containing such information as the Secretary may reasonably require. (d) Eligible entity For purposes of this section, the term eligible entity shall include a school of nursing, a health care facility, a program leading to certification as a certified nurse assistant, a partnership of such a school and facility, or a partnership of such a program and facility. (e) Authorization of appropriations There are authorized to be appropriated to carry out this section $5,000,000 for each of fiscal years 2018 through 2022. . 5. National palliative care education and awareness campaign Part A of title IX of the Public Health Service Act ( 42 U.S.C. 299 et seq.) is amended by adding at the end the following new section: 904. National palliative care education and awareness campaign (a) In general Under the authority under section 902(a) to disseminate information on health care and on systems for the delivery of such care, the Director shall provide for the planning and implementation of a national education and awareness campaign to inform patients, families, and health professionals about the benefits of palliative care throughout the continuum of care for patients with serious or life-threatening illness. (b) Information disseminated (1) Mandatory information The campaign under subsection (a) shall include dissemination of the following: (A) Palliative care Information, resources, and communication materials about palliative care as an essential part of the continuum of quality care for patients and families facing serious or life-threatening illness (including cancer; heart, kidney, liver, lung, and infectious diseases; as well as neurodegenerative disease such as dementia, Parkinson’s disease, or amyotrophic lateral sclerosis). (B) Palliative care services Specific information regarding the services provided to patients by professionals trained in hospice and palliative care, including pain and symptom management, support for shared decisionmaking, care coordination, psychosocial care, and spiritual care, explaining that such services may be provided starting at the point of diagnosis and alongside curative treatment and are intended to— (i) provide patient-centered and family-centered support throughout the continuum of care for serious and life-threatening illness; (ii) anticipate, prevent, and treat physical, emotional, social, and spiritual suffering; (iii) optimize quality of life; and (iv) facilitate and support the goals and values of patients and families. (C) Palliative care professionals Specific materials that explain the role of professionals trained in hospice and palliative care in providing team-based care (including pain and symptom management, support for shared decisionmaking, care coordination, psychosocial care, and spiritual care) for patients and families throughout the continuum of care for serious or life-threatening illness. (D) Research Evidence-based research demonstrating the benefits of patient access to palliative care throughout the continuum of care for serious or life-threatening illness. (E) Population-specific materials Materials shall be developed that target specific populations, including patients with serious or life-threatening illness who are among medically underserved populations (as defined in section 330(b)(3)) and families of such patients or health professionals serving medically underserved populations. Such populations shall include pediatric patients, young adult and adolescent patients, racial and ethnic minority populations, and other priority populations specified by the Director. (2) Other information In addition to the information described in paragraph (1), such campaign may include dissemination of such other information as the Director determines to be relevant. (3) Information format The information and materials required to be disseminated under paragraph (1) and any information disseminated under paragraph (2) shall be presented in a variety of formats (such as posted online, in print, and through public service announcements). (4) Required publication The information and materials required to be disseminated under paragraph (1) and any information disseminated under paragraph (2) shall be posted on the Internet websites of relevant Federal agencies and Departments, including the Agency for Healthcare Research and Quality, the Centers for Medicare & Medicaid Services, the Administration on Aging, the Centers for Disease Control and Prevention, and the Department of Veterans Affairs. (c) Consultation The Director shall consult with appropriate professional societies, hospice and palliative care stakeholders, and relevant patient advocate organizations with respect to palliative care, psychosocial care, and complex chronic illness with respect to the following: (1) The planning and implementation of the national palliative care education and awareness campaign under this section. (2) The development of information to be disseminated under this section. (3) A definition of the term serious or life-threatening illness for purposes of this section. . 6. Clarification None of the funds made available under this Act (or an amendment made by this Act) may be used to provide, promote, or provide training with regard to any item or service for which Federal funding is unavailable under section 3 of Public Law 105–12 ( 42 U.S.C. 14402 ). 7. Enhancing NIH research in palliative care (a) In general Part B of title IV of the Public Health Service Act ( 42 U.S.C. 284 et seq.) is amended by adding at the end the following new section: 409K. Enhancing research in palliative care (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 to expand national research programs in palliative care. (b) Research programs The Director of the National Institutes of Health shall expand and intensify research programs in palliative care to address the quality of care and quality of life for the rapidly growing population of patients in the United States with serious or life-threatening illnesses, including cancer; heart, kidney, liver, lung, and infectious diseases; as well as neurodegenerative disease such as dementia, Parkinson’s disease, or amyotrophic lateral sclerosis. . (b) Expanding trans-NIH research reporting To include palliative care research Section 402A(c)(2)(B) of the Public Health Service Act ( 42 U.S.C. 282a(c)(2)(B) ) is amended by inserting and, beginning January 1, 2018, for conducting or supporting research with respect to palliative care after or national centers .