Sec. 401. Commission on Improving Patient Directed Health Care
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Congress finds the following: In order to elevate the role of patient choices in the health care system, the American public must engage in an informed, national, public debate on how the current health care system empowers and informs health care decision-making, and what can be done to improve the likelihood patients receive the care they want and need. Research suggests that patients often do not receive the care they want. As a result, the end of life is associated with a substantial burden of suffering by the patient and negative health and financial consequences that extend to family members and society.
Patients face a complex and fragmented health care system that may decrease the likelihood that health care choices are known and carried out. The health care system should embed principles that take into account patient wishes. Decisions concerning health care, including end-of-life issues, affect an increasing number of Americans. Medical advances are prolonging life expectancy in the United States both in acute life-threatening situations and protracted battles with illness.
These advances raise new challenges surrounding health care decision-making. The United States health care system should promote consideration of a person’s preference in health care decision-making and end-of-life choices. The Social Security Act is amended by inserting after section 1150B ( 42 U.S.C. 1320b–24 ) the following new section: The purposes of this section are to— provide a forum for a nationwide public debate on improving patient self-determination in health care decision-making; identify strategies that ensure every American has the health care they want; and provide recommendations to Congress that result from the debate.
The Secretary shall establish an entity to be known as the Commission on Improving Patient Directed Health Care (referred to in this section as the Commission ). The Commission shall be composed of 15 members. One member shall be the Secretary. The Comptroller General of the United States shall appoint 14 members. The membership of the Commission shall include— health care consumers impacted by decision-making in advance of a health care crisis, such as individuals of advanced age, individuals with chronic, terminal and mental illnesses, family care givers, and individuals with disabilities; providers in settings where crucial health care decision-making occurs, such as those working in intensive care settings, emergency room departments, primary care settings, nursing homes, hospice, or palliative care settings; payors ensuring patients get the level of care they want; experts in advance care planning, hospice, palliative care, information technology, bioethics, aging policy, disability policy, pediatric ethics, cultural sensitivity, psychology, and health care financing; individuals who represent culturally diverse perspectives on patient self-determination and end-of-life issues; and members of the faith community.
Members of the Commission shall be appointed for the life of the Commission. Any vacancies shall not affect the power and duties of the Commission but shall be filled in the same manner as the original appointment. Not later than 15 days after the date on which all members of the Commission have been appointed, the Comptroller General shall designate the chairperson of the Commission. The Commission may establish subcommittees if doing so increases the efficiency of the Commission in completing tasks.
Not later than 90 days after the date of designation of the chairperson under subsection (e), the Commission shall hold no fewer than 8 hearings to examine— the current state of health care decision-making and advance care planning laws in the United States at the Federal level and across the States, as well as options for improving advance care planning tools, especially with regard to use, portability, and storage; consumer-focused approaches that educate the American public about patient choices, care planning, and other end-of-life issues; the use of comprehensive, patient-centered care plans by providers, the impact care plans have on health care delivery and spending, and methods to expand the use of high quality care planning tools in both public and private health care systems; the role of electronic medical records and other technologies in improving patient-directed health care; innovative tools for improving patient experience with advanced illness, such as palliative care, hospice, and other models; the role social determinants of health, such as socio-economic status, play in patient self-direction in health care; the use of culturally-competent tools for health care decision-making; strategies for educating providers and increasing provider engagement on care planning, palliative care, hospice care, and other issues surrounding honoring patient choices; the sociological and psychological factors that influence health care decision-making and end-of-life choices; and the role of spirituality and religion in patient self-determination in health care.
The Commission may hold additional hearings on subjects other than those listed in paragraph
(1)so long as such hearings are determined necessary by the Commission in carrying out the purposes of this section. Such additional hearings do not have to be completed within the time period specified but shall not delay the other activities of the Commission under this section. The Commission shall hold no fewer than 8 hearings as indicated in paragraph
(1)and in sufficient number in order to receive information that reflects— the geographic differences throughout the United States; diverse populations; and a balance among urban and rural populations. The Commission may encourage public participation in hearings through interactive technology and other means as determined appropriate by the Commission. Not later than 90 days after the hearings described in paragraphs
(1)and
(2)are completed, the Commission shall prepare and make available to health care consumers through the Internet and other appropriate public channels, a report to be entitled, Report to the American People on Patient Directed Health Care . Such a report shall be understandable to the general public and include— a summary of— the hearings described in such paragraphs; how the current health care system empowers and informs decision-making in advance of a health care crisis; factors that contribute to the provision of health care that does not adhere to patient wishes; the impact of care that does not follow patient choices, particularly at the end-of-life, on patients, families, providers, spending, and the health care system; the laws surrounding advance care planning and health care decision-making including issues of portability, use, and storage; consumer-focused approaches to education of the American public about patient choices, care planning, and other end-of-life issues; the role of care plans in health care decision-making; the role of providers in ensuring patients receive the care they want; the role of electronic medical records and other technologies in improving patient directed health care; the impact of social determinants on patient self-direction in health care services; the use of culturally competent methods for health care decision-making; the sociological and psychological factors that influence patient self-determination; and the role of spirituality and religion in health care decision-making and end-of-life care; best practices from communities, providers, and payors that document patient wishes and provide health care that adheres to those wishes; and information on educating providers about health care decision-making and end-of-life issues. Not later than 180 days after the date of completion of the hearings, the Commission shall prepare and make available to the public through the Internet and other appropriate public channels, an interim set of recommendations on patient self-determination in health care and ways to improve and strengthen the health care system based on the information and preferences expressed at the community meetings. There shall be a 90-day public comment period on such recommendations. Not later than 120 days after the expiration of the public comment period described in subsection (g)(6), the Commission shall submit to Congress and the President a final set of recommendations. The recommendations must be comprehensive and detailed. The recommendations must contain recommendations or proposals for legislative or administrative action as the Commission deems appropriate, including proposed legislative language to carry out the recommendations or proposals. There shall be an Executive Director of the Commission who shall be appointed by the chairperson of the Commission in consultation with the members of the Commission. While serving on the business of the Commission (including travel time), a member of the Commission shall be entitled to compensation at the per diem equivalent of the rate provided for level IV of the Executive Schedule under section 5315 of title 5, United States Code, and while so serving away from home and the member’s regular place of business, a member may be allowed travel expenses, as authorized by the chairperson of the Commission. For purposes of pay and employment benefits, rights, and privileges, all personnel of the Commission shall be treated as if they were employees of the Senate. The Commission may secure directly from any Federal department or agency such information as the Commission considers necessary to carry out this section. Upon request of the Commission the head of such department or agency shall furnish such information. The Commission may use the United States mails in the same manner and under the same conditions as other departments and agencies of the Federal Government. Not more than 4 Federal Government employees employed by the Department of Labor, 4 Federal Government employees employed by the Social Security Administration, and 8 Federal Government employees employed by the Department of Health and Human Services may be detailed to the Commission under this section without further reimbursement. Any detail of an employee shall be without interruption or loss of civil service status or privilege. The chairperson of the Commission may procure temporary and intermittent services under section 3109(b) of title 5, United States Code, at rates for individuals which do not exceed the daily equivalent of the annual rate of basic pay prescribed for level V of the Executive Schedule under section 5316 of such title. Not later than 1 year after the date of enactment of this Act, and annually thereafter during the existence of the Commission, the Commission shall report to Congress and make public a detailed description of the expenditures of the Commission used to carry out its duties under this section. The Commission shall terminate on the date that is 3 years after the date on which all the members of the Commission have been appointed under subsection (c)(1) and appropriations are first made available to carry out this section. Not later than 45 days after receiving the final recommendations of the Commission under subsection (h), the President shall submit a report to Congress which shall contain— additional views and comments on such recommendations; and recommendations for such legislation and administrative action as the President considers appropriate. There are authorized to be appropriated to carry out this section, $3,000,000 for each of fiscal years 2014 and 2015. There are authorized to be appropriated for the preparation and dissemination of the Report to the American People on Patient Directed Health Care described in subsection (g)(5), $1,000,000 for the fiscal year in which the report is required to be submitted. .
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- 42 USC 1320b–24
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Sec. 401
Commission on Improving Patient Directed Health Care
Cite42 USC 1320b–24
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