,,ii #aacth ,,congress #b;d ,session ,s4 #bhjj ,,in ,,the ,,senate ,,of ,,the ,,united ,,states ,september #aa1 #bjad,mr4 ,begich 7for himself and ,mr4 ,king7 introduced the following bill2 which was read twice and referred to the ,committee on ,health1 ,education1 ,labor1 and ,pensions ,a ,,bill ,to create a patient-centered quality of care initiative for seriously ill patients through the establishment of a stakeholder strategic summit1 quality of life education and awareness initiative1 health care workforce training1 an advisory committee1 and palliative care focused research1 and for other purposes4 #a4 ,short title ,this ,act may be cited as the ,patient ,centered ,quality ,care for ,life ,act4 #b4 ,findings ,congress finds the following3 7#a7 ,studies demonstrate that1 despite very high health expenditures1 seriously ill patients are not satisfied with the quality of their medical care1 characterized by untreated symptoms1 unmet psychosocial and personal care needs1 high caregiver burden1 and low patient and family satisfaction4 7#b7 ,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 7and family caregivers of such patients and survivors7 facing serious illness like cancer2 heart1 renal and liver failure2 lung disease2 ,alzheimer's disease and related dementias1 which are care needs that can span over many years or even decades and impose significant burdens on family caregivers4 7#c7 ,public outreach and education for seriously ill patients1 survivors1 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 patients1 survivors1 and their families1 which should be an integral element of quality health care4 7#d7 ,palliative care is specialized medical care for seriously ill patients4 ,this type of care is focused on providing patients with relief from the symptoms1 pain1 and stresses of a serious illness--whatever the diagnosis4 ,the goal is to improve quality of life for both the patient and the family4 ,palliative care is provided by a team of doctors1 nurses1 and other specialists who work with a patient's other doctors to provide an extra layer of support4 ,palliative care is appropriate at any age and at any stage in a serious illness1 and can be provided together with curative treatment4 7#e7 ,medical teams that help patients manage pain and stress during1 alongside1 and after treatment provide patients with better quality of life4 ,evidence-based research shows that such care may also lead to increased survival4 ,these teams also reduce preventable suffering and caregiver breakdown4 7#f7 ,patients receiving palliative or coordinated care feel better and are more likely to keep their doctor's appointments1 complete their treatment1 and take their medications4 ,if patient disease-related and treatment-related symptoms such as pain1 nausea1 depression1 fatigue1 and breathlessness are managed1 patients are more likely to eat well1 exercise1 socialize1 and take pleasure in things that can help them feel better emotionally and physically and help them fight chronic illness4 7#g7 ,a #bjaj ,harris ,interactive poll commissioned by the ,american ,cancer ,society ,cancer ,action ,network 7,,acscan7 among cancer patients1 survivors1 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 life4 ,in that same poll1 fewer than one-third of the patients and survivors were asked if they were having stress1 depression1 anxiety1 or other emotional concerns related to the cancer or discussed ways to help with those emotional effects1 though more than one-third of such patients and survivors said they had these emotional concerns4 7#h7 ,a report commissioned by the ,health ,resources ,service ,administration 7,,hrsa7 in #bjjb 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 patients4 ,several ,institute of ,medicine cancer reports1 including on palliative care in #bjja1 survivorship in #bjjf1 psychosocial care in #bjjg1 and pain in #bjaa have also consistently signaled the need for skills training to improve health professional communication with patients and families regarding symptoms1 establishing goals of care1 tailoring treatments to those goals1 and other quality of life concerns4 #c4 ,national patient-centered health care and quality of life stakeholder strategic summit 7a7 ,summit ,not later than one year after the date of the enactment of this section1 the ,secretary of ,health and ,human ,services shall convene a ,patient-,centered ,health ,care and ,quality of ,life ,stakeholder ,strategic ,summit 7in this ,act to be referred to as the ,summit7 to be composed of individuals with appropriate expertise to-- 7#a7 analyze key health system barriers to providing patient-centered health care that integrates symptom management and other aspects of coordinated or palliative care2 and 7#b7 identify strategic solutions for collectively addressing quality of life concerns for the rapidly expanding population of patients and survivors facing serious1 complex1 and chronic illness in the ,united ,states and for the families of such patients and survivors4 7b7 ,participants ,the ,summit shall include representatives from at least the following3 7#a7 ,federal agencies1 including-- 7,a7 the ,department of ,health and ,human ,services1 including from the ,centers for ,disease ,control and ,prevention1 the ,health ,resources and ,services ,administration1 the ,agency for ,healthcare ,research and ,quality1 the ,centers for ,medicare ,medicaid ,services1 and the ,national ,institutes of ,health2 7,b7 the ,department of ,veterans ,affairs2 and 7,c7 the ,department of ,defense4 7#b7 ,private organizations1 including-- 7,a7 health professional organizations that represent physicians1 nurses1 pharmacists1 and social workers2 7,b7 patient non-profit organizations 7as defined in section #d7;g772 7,c7 private health insurance organizations2 7,d7 faith community representatives2 and 7,e7 other professionals as deemed appropriate by the ,secretary4 7c7 ,steering ,committee 7#a7 ,in general ,the ,secretary shall establish a ,summit ,steering ,committee to plan the ,summit1 coordinate participants of the ,summit1 develop an agenda for the ,summit that is in accordance with subsection 7d71 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 7in this ,act to be referred to as the ,national ,action ,agenda7 in accordance with subsection 7d77#d74 ,the ,secretary shall appoint the representatives described in paragraph 7#b77;,a7 and shall seek nominations from relevant stakeholders and1 from such nominations1 appoint representatives described in paragraph 7#b77;,b74 7#b7 ,composition ,the ,summit ,steering ,committee shall consist of at least the following members3 7,a7 ,members from ,federal agencies 7i7 ,the ,secretary1 who will serve as chair of the ,committee4 7ii7 ,four representatives from ,federal agencies described in subsection 7b7 7or any other ,federal agency deemed appropriate by the ,secretary71 to be appointed by the ,secretary4 7,b7 ,members representing stakeholder entities 7i7 ,six representatives of health professionals 7with each of such #f representatives having research1 clinical1 and teaching or mentoring expertise74 7ii7 ,three representatives of patient advocacy organizations4 7iii7 ,one representative of a private health insurance organization4 7iv7 ,one representative of faith communities4 7v7 ,two physicians4 7vi7 ,two nurses4 7vii7 ,one social worker4 7d7 ,agenda ,the agenda for the ,summit shall focus on specific areas that include at least the following3 7#a7 ,improving communication and coordination of health care among primary care providers1 medical specialists1 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 patients4 7#b7 ,examining the appropriate roles of both physician and non-physician professionals 7such as nurse practitioners1 clinical social workers1 physician assistants1 and other patient or survivor navigators or case coordinators7 in strengthening access to integrated1 coordinated1 or palliative care across care settings for all seriously ill patients and families of such patients4 7#c7 ,examining the role of health information technology in promoting delivery of integrated care to such patients4 7#d7 ,developing recommendations for a ,national ,action ,agenda1 which shall specify research1 surveillance1 health information technology1 workforce training1 delivery of care1 and communication activities required to collectively address barriers to achieving integrated palliative care for seriously ill patients in all care settings4 ,such agenda shall include strategies for reducing disparities among medically underserved populations4 7e7 ,report ,not later than one year after the last day of the ,summit1 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 ,health1 ,education1 ,labor1 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 public4 7f7 ,seriously ill patient defined ,for purposes of this ,act1 the term seriously ill patient means an individual who has a serious health condition 7as defined in section #aja7aa7 of the ,family and ,medical ,leave ,act of #aiic 7#bf ,u4,s4,c4 #biaa7aa7774 7g7 ,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 #bjad through #bjah4 #d4 ,quality of life patient and professional awareness grants program initiative ,title ,,iii of the ,public ,health ,service ,act 7#db ,u4,s4,c4 #bda et seq47 is amended by adding at the end the following new part3 ,w ,programs ,relating to ,palliative ,care #cii,,oo4 ,quality of life patient and professional awareness grants program initiative 7a7 ,in general ,not later than #f 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 #c7;e7 of the ,patient ,centered ,quality ,care for ,life ,act1 the ,secretary1 through the ,director of the ,centers for ,disease ,control and ,prevention1 shall establish a national quality of life education and awareness grants program initiative for seriously ill patients1 families of such patients1 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 patients4 ,under the initiative1 the ,secretary shall1 subject to subsection 7h71 award competitive grants to eligible entities described in subsection 7b7 to develop new and expand existing information1 resources1 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 cancer2 heart1 renal and liver failure2 lung disease2 and ,alzheimer's disease and related dementias4 ,such materials shall be presented in a variety of formats 7such as online1 print1 and public service announcement74 7b7 ,eligible entities ,for purposes of this section1 an eligible entity includes only a ,state health department1 community health center1 ,state or territory program supported by the ,national ,comprehensive ,cancer ,control ,program of the ,centers for ,disease ,control and ,prevention1 health profession school1 chronic disease or cancer center1 academic medical center1 physician practice1 home health care agency1 palliative care or psychosocial care team 7as defined in subsection 7g771 hospice program1 patient non-profit organization 7as defined in subsection 7g771 clinical pastoral education program1 long-term care facility1 faith community organization1 or other public or private entity or organization addressing patient-centered care and quality of life concerns of seriously ill patients4 7c7 ,application ,to be eligible to receive a grant under this section1 an entity shall submit to the ,secretary an application at such time1 in such manner1 and containing such information as the ,director may require1 including assurances that the entity will-- 7#a7 evaluate programs carried out by the entity through a grant provided under this section2 7#b7 submit to the ,secretary a report on the findings of such evaluations2 and 7#c7 coordinate the dissemination of such findings with the ,secretary4 7d7 ,use of funds ,an entity awarded a grant under this section shall use such grant to carry out programs described in subsection 7e71 for patients and families of such patients that further the purposes described in subsection 7a74 7e7 ,programs ,programs described in this subsection1 for which a grant awarded under this section may be used1 include programs to-- 7#a7 navigate the health system1 including assistance to patients with finding health professionals to support quality of life needs1 care decisionmaking and coordination1 and transitions across care settings2 7#b7 provide general advocacy on behalf of patients and survivors to provide patients information to help them effectively communicate with health care providers about pain1 physical and psychosocial symptoms1 and barriers they are facing in adhering to curative or disease-directed treatments2 7#c7 encourage health professionals to request coordinated patient-centered care consults for patients that are integrated alongside disease directed treatment in various care settings2 and 7#d7 collect and analyze data related to the effectiveness of the initiative under subsection 7a74 7f7 ,priority ,in carrying out the grant program under this section1 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 7as defined in section #acjb7g77 and families of such patients or health professionals serving medically underserved populations4 ,such populations would include pediatric patients1 young adult and adolescent patients1 racial and ethnic minority populations1 and other priority populations specified by the ,secretary4 7g7 ,definitions ,for purposes of this section3 7#a7 ,psychosocial care team ,the term psychosocial care team means health professionals focused on addressing social and emotional concerns of serious illness1 and may include professionals such as social workers1 psychiatrists1 psychologists1 nurses1 child life specialists1 teachers1 chaplains1 spiritual counselors1 physical and occupational therapists1 nutritionists1 integrative medicine specialists1 patient service coordinators1 patient navigators1 and patient representatives4 7#b7 ,patient non-profit organization ,the term patient non-profit organization means a nonprofit entity primarily engaged in raising funds for health-related research1 such as disease prevention1 health education1 and patient services4 7h7 ,authorization of appropriations ,there is authorized to be appropriated to carry out this section such sums as are necessary4 4 #e4 ,professional workforce training grants program initiative ,part ,w of title ,,iii of the ,public ,health ,service ,act1 as added by section #d1 is amended by adding at the end the following new section3 #cii,,oo-#a4 ,professional workforce training grants program initiative 7a7 ,initiative 7#a7 ,in general ,not later than #f 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 #c7;e7 of the ,patient ,centered ,quality ,care for ,life ,act1 the ,secretary1 through the ,administrator of the ,health ,resources and ,services ,administration1 shall establish a health care professional workforce training grants program initiative for the purposes of promoting and enhancing symptom assessment and management1 communications skills1 coordinated patient-centered care1 and other quality of life focused clinical core competencies 7as described in paragraph 7#b77 across all clinical specialties that serve seriously ill patients and patients with multiple or complex chronic diseases1 such as patients with cancer2 heart1 renal1 and liver failure2 lung disease2 and ,alzheimer's disease and related dementias4 ,under such initiative1 the ,secretary shall1 subject to subsection 7i71 award competitive grants to eligible entities to provide evidence-based training and develop new training for health professionals1 including physicians1 nurses1 social workers1 and professional chaplains for the purposes described in the previous sentence4 7#b7 ,quality of life focused clinical core competencies described ,for purposes of paragraph 7#a71 quality of life focused clinical core competencies include1 at a minimum1 the assessment and management of physical1 psychological1 and spiritual symptoms2 establishment of patient-centered goals of care2 support to patient and family caregivers2 and management of transitions across care sites4 7b7 ,eligible entities ,for purposes of subsection 7a71 an eligible entity is an entity described in section #cii,,oo7b74 7c7 ,application ,to be eligible to receive a grant under this section1 an entity shall submit to the ,secretary an application at such time1 in such manner1 and containing such information as the ,secretary may require1 including assurances that the entity will-- 7#a7 evaluate programs carried out by the entity through the grant provided under this section2 7#b7 submit to the ,secretary a report on the findings of such evaluations2 and 7#c7 coordinate the dissemination of such findings with the ,secretary4 7d7 ,use of funds ,an entity awarded a grant under this section shall use such grant to carry out programs described in subsection 7e7 to train health care professionals described in subsection 7a77#a7 for the purposes described in such subsection4 7e7 ,programs ,programs described in this subsection1 for which a grant awarded under this section may be used1 include programs to-- 7#a7 enhance health professional communication skills in caring for seriously ill patients and survivors1 establishing goals of care1 and tailoring treatments2 7#b7 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 teams2 7#c7 improve health professional skills in symptoms assessment and management1 developing comprehensive care coordination and discharge plans to support transitions across care settings1 managing patients with complex or multiple chronic conditions1 and preparing survivorship care plans2 7#d7 promote quality of life focused clinical core competencies 7as described in subsection 7a77#b77 across all clinical specialties serving seriously ill patients2 7#e7 provide technical assistance to hospitals and other care settings to establish coordinated palliative care teams2 7#f7 create and expand coordinated palliative care leadership centers 7as defined in subsection 7h772 7#g7 provide mentoring and training to health professionals2 7#h7 improve cultural sensitivity communication and patient care for minority and medically underserved populations1 including by addressing the particular needs of children1 adolescents1 and families of such children and adolescents2 racial and ethnic groups2 and other medically underserved patient and survivor populations2 and 7#i7 collect and analyze data related to the effectiveness of health professional education and training efforts carried out pursuant to this section4 7f7 ,priority ,in carrying out the grant program under this section1 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 7as defined in section #acjb7g77 and families of such patients or health professionals serving medically underserved populations4 ,such populations would include pediatric patients1 young adult and adolescent patients1 racial and ethnic minority populations1 and other priority populations specified by the ,secretary4 7g7 ,study ,not later than one year after the date of the enactment of the ,patient ,centered ,quality ,care for ,life ,act1 the ,secretary shall update and expand the ,september #bjjb report of the ,health ,resources and ,services ,administration1 titled ,the ,supply1 ,demand and ,use of ,palliative ,care ,physicians in the ,united ,states4 ,such update and expansion shall be based on an examination of workforce trends1 workforce capacity1 and training needs for palliative medicine physicians1 physician assistants1 nurse practitioners1 and other palliative care team members in all care settings in the ,united ,states1 as well as training needs for other medical specialists and non-physician clinicians4 7h7 ,palliative care leadership center defined ,for purposes of this section1 the term palliative care leadership center means a center-- 7#a7 that trains hospital palliative care programs2 7#b7 that provides intensive operational training and mentoring for palliative care programs at every stage of development and growth2 and 7#c7 that provides training oriented to teams rather than individuals1 and involves participation by teams of hospital and hospice health care professionals involved in starting or running a palliative care program1 including physicians1 nurses1 social workers1 administrators and financial managers4 7i7 ,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 #bjad through #bjai4 4 #f4 ,quality of life cross-agency advisory committee ,part ,w of title ,,iii of the ,public ,health ,service ,act1 as added by section #d and amended by section #e1 is further amended by adding at the end the following new section3 #cii,,oo-#b4 ,quality of life cross-agency advisory committee 7a7 ,establishment ,not later than #ij days after the date of the enactment of this section and subject to subsection 7e71 the ,secretary shall establish a ,quality of ,life ,cross-,agency ,advisory ,committee 7in this section to be referred to as the ,advisory ,committee7 to advise1 coordinate1 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 #cii,,oo and the health care professional workforce training initiative under section #cii,,oo-#a and disseminate findings that have been identified from such initiatives for cross agency implementation of best practices4 7b7 ,membership ,the ,advisory ,committee shall be composed of members who shall be appointed by the ,secretary and shall include representatives of-- 7#a7 the ,department of ,health and ,human ,services1 including from the ,centers for ,disease ,control and ,prevention1 the ,health ,resources and ,services ,administration1 the ,agency for ,healthcare ,research and ,quality1 the ,centers for ,medicare ,medicaid ,services1 and the ,national ,institutes of ,health2 7#b7 the ,department of ,veterans ,affairs2 7#c7 the ,department of ,defense2 7#d7 public and private organizations with expertise in patient-centered care1 palliative care1 psychosocial care1 and symptom management and survivorship2 and 7#e7 such other representatives as the ,secretary deems necessary4 7c7 ,duties ,the ,advisory ,committee shall-- 7#a7 evaluate the results of the programs funded by the grants awarded under section #cii,,oo7b7 and under section #cii,,oo-#a7;b72 7#b7 coordinate and implement a cross-agency strategic plan1 with respect to the agencies specified in subsection 7b71 to disseminate findings from such programs2 7#c7 advise the ,secretary of ,health and ,human ,services on strategies for disseminating across agencies specified in subsection 7b7 recommendations from the ,national ,action ,agenda described in section #c7;c77#a7 of the ,patient ,centered ,quality ,care for ,life ,act2 7#d7 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 basic1 clinical1 behavioral1 or other research required to achieve further improvements in care to support quality of life and survivorship2 7#e7 develop a strategy for developing new and enhancing health surveillance tools used to track symptoms1 late effects1 and quality care trends over time1 including national surveys of the overall population of the ,united ,states1 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 ,health1 as well as administrative databases and disease registries such as databases of the ,centers for ,medicare ,medicaid ,services1 the ,surveillance ,epidemiology and ,end ,results 7,,seer7 cancer registries program of the ,national ,cancer ,institute1 the ,,seer-,medicare ,linked ,database of the ,national ,cancer ,institute1 and the ,national ,program of ,cancer ,registries of the ,centers for ,disease ,control and ,prevention2 and 7#f7 make appropriate updates and addendums annually to the ,national ,action ,agenda4 7d7 ,meetings ,the ,advisory ,committee shall meet at least once a year4 7e7 ,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 #bjad through #bjai4 4 #g4 ,enhancing research in support of patient quality of life 7a7 ,in general ,part ,w of title ,,iii of the ,public ,health ,service ,act1 as added by section #d and amended by sections #e and #f1 is further amended by adding at the end the following new section3 #cii,,oo-#c4 ,enhancing research in support of patient quality of life 7a7 ,in general ,the ,secretary1 acting through the ,director of the ,national ,institutes of ,health1 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 #cii,,oo-#b to expand national research programs in symptom management1 palliative1 psychosocial1 and survivorship care4 7b7 ,research programs ,the ,director of the ,national ,institutes of ,health shall expand and intensify research programs in symptom management and palliative1 psychosocial1 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 7with illnesses such as cancer2 heart1 renal and live failure2 lung disease2 and ,alzheimer's disease and related dementias74 4 7b7 ,expanding ,trans-,,nih research reporting ,to include quality of life and survivorship research 7#a7 ,in general ,section #djb;,a7c77#b77;,b77i7 of the ,public ,health ,service ,act 7#db ,u4,s4,c4 #bhb;a7c77#b77;,b77i77 is amended by inserting and for conducting or supporting research with respect to quality of life and survivorship after or national centers4 7#b7 ,effective date ,the amendment made by paragraph 7#a7 shall apply with respect to reports required on or after ,january #a1 #bjad4