II 

118TH CONGRESS 

2D SESSION S. 4949 

To improve end-of-life care. 

IN THE SENATE OF THE UNITED STATES 

AUGUST 1, 2024 

Mr. BLUMENTHAL introduced the following bill; which was read twice and 

referred to the Committee on Health, Education, Labor, and Pensions 

A BILL 

To improve end-of-life care. 

1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled, 

3 SECTION 1. SHORT TITLE. 

4 (a) SHORT TITLE.—This Act may be cited as the 

5 ‘‘Compassionate Care Act’’. 

6 (b) TABLE OF CONTENTS.—The table of contents of 

7 this Act is as follows: 

Sec. 1. Short title. 

Sec. 2. Definitions. 

TITLE I—ADVANCE CARE PLANNING 

Subtitle A—Consumer Education 

Sec. 101. Advance care planning guidelines. 

Sec. 102. National public education campaign. 

Subtitle B—Provider Education 


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Sec. 111. Public provider advance care planning website. 

Sec. 112. Advance care curricula pilot program. 

Sec. 113. Development of core end-of-life care quality measures across each relevant provider setting. 

Sec. 114. Continuing education for qualified health care providers. 

Subtitle C—Medicare Amendments 

Sec. 121. Permanent extension of authorization for use of telehealth to conduct 

face-to-face encounter prior to recertification of eligibility for 

hospice care. 

Sec. 122. Improvements to advance care planning through telehealth. 

TITLE II—REPORTS, RESEARCH, AND EVALUATIONS 

Sec. 201. Study and report by the Secretary regarding the establishment and 

implementation of a national uniform policy on advance directives. 

Sec. 202. GAO study and report on establishment of national advance directive 

registry; other studies. 

1 SEC. 2. DEFINITIONS. 

2 In this Act: 

3 (1) ADVANCE CARE PLANNING.—The term ‘‘ad4 vance care planning’’ means the process of discus5 sion of care in the event that an individual is unable 

6 to make treatment decisions on their own behalf, 

7 clarification of related values and goals, and embodi8 ment of preferences and decision-making through 

9 written documents and medical orders. 

10 (2) ADVANCE DIRECTIVE.—The term ‘‘advance 

11 directive’’ means a written or otherwise recorded in12 struction, such as a living will or durable power of 

13 attorney for health care, recognized under the law of 

14 the State in which it was executed (whether statu15 tory or as recognized by the courts of the State) and 


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1 relating to the provision of such care when the indi2 vidual is incapacitated. 

3 (3) CERTIFIED CHAPLAIN.—The term ‘‘certified 

4 chaplain’’ means a member of clergy who has met 

5 the requirements under the Common Qualifications 

6 and Competencies for Professional Chaplains and is 

7 board certified by a national chaplaincy organiza8 tion. 

9 (4) CHIP.—The term ‘‘CHIP’’ means the 

10 State Children’s Health Insurance Program under 

11 title XXI of the Social Security Act (42 U.S.C. 

12 1397aa et seq.). 

13 (5) END-OF-LIFE CARE.—The term ‘‘end-of-life 

14 care’’ means all aspects of care of a patient with a 

15 potentially fatal condition, and includes care that is 

16 focused on preparations for an impending death. 

17 (6) HEALTH CARE AGENT.—The term ‘‘health 

18 care agent’’ means the person, designated in a 

19 health care power of attorney, who is selected to 

20 make medical decisions on behalf of the person who 

21 executed such power of attorney, in the case of inca22 pacity of such person who executed the power of at23 torney. 

24 (7) HEALTH CARE POWER OF ATTORNEY.—The 

25 term ‘‘health care power of attorney’’ means a legal 


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1 document that identifies the health care agent of the 

2 person executing such document. 

3 (8) LIVING WILL.—The term ‘‘living will’’ 

4 means a written document or a video statement 

5 about the kinds of medical care or other care a per6 son does or does not want under certain specific con7 ditions, in the event that such person no longer is 

8 able to express those wishes. 

9 (9) MEDICAID.—The term ‘‘Medicaid’’ means 

10 the program established under title XIX of the So11 cial Security Act (42 U.S.C. 1396 et seq.). 

12 (10) MEDICARE.—The term ‘‘Medicare’’ means 

13 the program established under title XVIII of the So14 cial Security Act (42 U.S.C. 1395 et seq.). 

15 (11) ORDERS FOR LIFE-SUSTAINING TREAT16 MENT.—The term ‘‘orders for life-sustaining treat17 ment’’ means a set of portable medical orders (such 

18 as physician orders for life-sustaining treatment or 

19 similar portable medical orders) that address key 

20 medical decisions consistent with the patient’s goals 

21 of care and results from a clinical process designed 

22 to facilitate shared, informed medical decision23 making and communication between qualified health 

24 care professionals and patients with serious, progres25 sive illness or frailty. 


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1 (12) QUALIFIED HEALTH CARE PROVIDER.— 

2 The term ‘‘qualified health care provider’’ means a 

3 medical doctor, doctor of osteopathy, nurse, physi4 cian assistant, nurse practitioner, social worker, 

5 home health aide, palliative care professional, com6 munity health worker, community health educator, 

7 or individual in a similar position, as designated by 

8 the Secretary. 

9 (13) SECRETARY.—The term ‘‘Secretary’’ 

10 means the Secretary of Health and Human Services. 

11 TITLE I—ADVANCE CARE 

12 PLANNING 

13 Subtitle A—Consumer Education 

14 SEC. 101. ADVANCE CARE PLANNING GUIDELINES. 

15 It is the sense of the Senate that, to the extent prac16 ticable, advance care planning should— 

17 (1) occur with an individual and such individ18 ual’s health care agent, primary clinician, other au19 thorized decisionmaker, or members of the entire 

20 interdisciplinary health care team; 

21 (2) be recorded and updated as needed; and 

22 (3) allow for flexible decisionmaking in the con23 text of the patient’s medical situation, in accordance 

24 with best practice guidelines provided by the Sec25 retary. 


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1 SEC. 102. NATIONAL PUBLIC EDUCATION CAMPAIGN. 

2 (a) NATIONAL PUBLIC EDUCATION CAMPAIGN.— 

3 (1) IN GENERAL.—Not later than January 1, 

4 2024, the Secretary, acting through the Director of 

5 the Centers for Disease Control and Prevention and 

6 in consultation with public and private entities, 

7 shall, directly or through grants, contracts, or inter8 agency agreements, develop and implement a na9 tional campaign to inform the public of the impor10 tance of advance care planning and of an individ11 ual’s right to direct and participate in health care 

12 decisions affecting such individual. 

13 (2) CONTENT OF EDUCATIONAL CAMPAIGN.— 

14 The national public education campaign established 

15 under paragraph (1) shall— 

16 (A) employ the use of various media, in17 cluding social media platforms and televised 

18 public service announcements; 

19 (B) provide culturally and linguistically ap20 propriate information; 

21 (C) be conducted continuously over a pe22 riod of not less than 5 years; 

23 (D) identify and promote the advance care 

24 planning information available on the Internet 

25 Websites of the Department of Health and 

26 Human Service’s National Clearinghouse for 


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1 Long-Term Care Information, the Administra2 tion for Children and Families, the Administra3 tion for Community Living, and the Centers for 

4 Medicare & Medicaid Services; 

5 (E) address the importance of individuals 

6 speaking to family members, health care prox7 ies, and qualified health care providers as part 

8 of an ongoing dialogue regarding health care 

9 choices; 

10 (F) address the need for individuals to use 

11 portable, interoperable, and accessible methods 

12 to communicate their health care decisions 

13 through a variety of means, using legally effec14 tuated documents that express their health care 

15 decisions in the form of advance directives (in16 cluding living wills, orders for life-sustaining 

17 treatment, and durable powers of attorney for 

18 health care); 

19 (G) raise public awareness regarding the 

20 availability of hospice and palliative care and 

21 the quality of life benefits of early use of such 

22 services; 

23 (H) encourage individuals to speak with 

24 qualified health care professionals about their 

25 options and intentions for end-of-life care; and 


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1 (I) adhere to evidence-based research on 

2 the most effective ways to communicate the ne3 cessity and benefits of advance care planning. 

4 (3) EVALUATION.—Not later than July 1, 

5 2026, the Secretary shall report to the appropriate 

6 committees of Congress on the effectiveness of the 

7 public education campaign under this section, and 

8 include in such report any recommendations that the 

9 Secretary determines appropriate regarding the need 

10 for continuation of legislative or administrative 

11 changes to facilitate changing public awareness, atti12 tudes, and behaviors regarding advance care plan13 ning. 

14 (4) AUTHORIZATION OF APPROPRIATIONS.— 

15 There are authorized to be appropriated such sums 

16 as may be necessary to carry out this section. 

17 (b) REPEAL.—Section 4751(d) of the Omnibus 

18 Budget Reconciliation Act of 1990 (42 U.S.C. 1396a note; 

19 Public Law 101–508) is repealed. 

20 Subtitle B—Provider Education 

21 SEC. 111. PUBLIC PROVIDER ADVANCE CARE PLANNING 

22 WEBSITE. 

23 (a) DEVELOPMENT.—Not later than January 1, 

24 2025, the Secretary, acting through the Administrator of 

25 the Centers for Medicare & Medicaid Services and the DiVerDate Sep 11 2014 22:22 Aug 31, 2024 Jkt 049200 PO 00000 Frm 00008 Fmt 6652 Sfmt 6201 E:\BILLS\S4949.IS S4949

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1 rector of the Agency for Healthcare Research and Quality, 

2 shall establish an, or expand upon an existing, internet 

3 website for providers under Medicare, Medicaid, CHIP, 

4 the Indian Health Service (including contract providers), 

5 and other qualified health care providers, including quali6 fied health care providers receiving assistance under the 

7 Older Americans Act of 1965 (42 U.S.C. 3002 et seq.) 

8 to serve older individuals, on each individual’s right to 

9 make decisions concerning medical care, including the 

10 right to accept or refuse medical or surgical treatment, 

11 and engage in advance care planning. 

12 (b) MAINTENANCE.—The internet website described 

13 in subsection (a) shall be maintained and publicized by 

14 the Secretary on an ongoing basis. 

15 (c) CONTENT.—The internet website shall include 

16 content, tools, and resources necessary to do the following: 

17 (1) Inform qualified health care providers and 

18 certified chaplains about the advance directive re19 quirements under the health care programs de20 scribed in subsection (a) and State and Federal laws 

21 and regulations related to advance care planning. 

22 (2) Educate qualified health care providers and 

23 certified chaplains about advance care planning 

24 quality improvement activities. 


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1 (3) Provide assistance to qualified health care 

2 providers to— 

3 (A) integrate advance care planning docu4 ments into electronic health records; and 

5 (B) develop and disseminate advance care 

6 planning informational materials for patients. 

7 (4) Inform qualified health care providers about 

8 advance care planning continuing education require9 ments and opportunities. 

10 (5) Encourage qualified health care providers to 

11 discuss advance care planning with patients of all 

12 ages, as appropriate. 

13 (6) Assist qualified health care providers and 

14 certified chaplains in understanding the continuum 

15 of end-of-life care services and supports available to 

16 patients, including palliative care and hospice. 

17 (7) Inform qualified health care providers of 

18 best practices for discussing end-of-life care with pa19 tients who have a serious or terminal diagnosis or 

20 prognosis and their loved ones. 

21 SEC. 112. ADVANCE CARE CURRICULA PILOT PROGRAM. 

22 (a) IN GENERAL.—The Secretary, in consultation 

23 with appropriate professional associations, shall establish 

24 a pilot program by which the Secretary awards grants to 

25 eligible entities for purposes of supporting such entities 


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1 in establishing end-of-life training requirements in the en2 tities’ applicable degree programs. 

3 (b) ELIGIBILITY.—To be eligible to participate in the 

4 pilot program under this section, an entity shall— 

5 (1) be a school of medicine, school of osteo6 pathic medicine, a physician assistant education pro7 gram (as defined in section 799B(3) of the Public 

8 Health Service Act (42 U.S.C. 295p(3))), a school of 

9 allied health (as defined in section 799B(4) of the 

10 Public Health Service Act (42 U.S.C. 295p(4))), a 

11 school of nursing, a school of social work, a graduate 

12 medical education program accredited by the Accred13 itation Council for Graduate Medical Education or 

14 the American Osteopathic Association, or other 

15 school, as the Secretary determines appropriate; 

16 (2) be staffed by teaching health professionals 

17 who have experience or training in palliative medi18 cine; 

19 (3) provide training in palliative medicine 

20 through a variety of service rotations, such as con21 sultation services, acute care services, extended care 

22 facilities, ambulatory care and comprehensive eval23 uation units, hospice, home health, and community 

24 care programs; 


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1 (4) develop specific performance-based meas2 ures to evaluate the competency of trainees; and 

3 (5) ensure that by not later than the end of the 

4 2-year period beginning on the date of enactment of 

5 this Act, professionals who are applicable faculty at 

6 the entity, or others as determined appropriate by 

7 the Secretary, shall be offered retraining in hospice 

8 and palliative medicine. 

9 (c) TRAINING.—Eligible entities participating in the 

10 pilot program under this section shall require minimum 

11 training for trainees that includes— 

12 (1) training in how to discuss and help patients 

13 and their loved ones with advance care planning; 

14 (2) with respect to trainees who will work with 

15 children, specialized pediatric training; 

16 (3) training in the continuum of end-of-life 

17 services and supports, including palliative care and 

18 hospice; 

19 (4) training in how to discuss end-of-life care 

20 with dying patients and their loved ones; 

21 (5) medical and legal issues training associated 

22 with end of life care; 

23 (6) training in linguistic and cultural com24 petency; and 


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1 (7) in the case of a graduate medical education 

2 program accredited by the Accreditation Council for 

3 Graduate Medical Education or the American Osteo4 pathic Association, a longitudinal component of at 

5 least 6 months. 

6 (d) REPORTS.—Each recipient of a grant under this 

7 section shall report to the Secretary on the outcomes of 

8 the program within 18 months of receipt of the final allot9 ment of grant funds. Not later than 1 year after receipt 

10 of all such reports, the Secretary shall submit to Congress 

11 a report compiling such results from all grant recipients. 

12 (e) AUTHORIZATION OF APPROPRIATIONS.—There 

13 are authorized to be appropriated such sums as may be 

14 necessary to carry out this section. 

15 SEC. 113. DEVELOPMENT OF CORE END-OF-LIFE CARE 

16 QUALITY MEASURES ACROSS EACH REL17 EVANT PROVIDER SETTING. 

18 (a) IN GENERAL.—The Secretary, acting through the 

19 Director of the Agency for Healthcare Research and Qual20 ity (in this section referred to as the ‘‘Director’’) and in 

21 consultation with the Administrator of the Centers for 

22 Medicare & Medicaid Services, shall require the develop23 ment of specific end-of-life quality measures for each rel24 evant qualified health care provider setting, as identified 


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1 by the Director, in accordance with the requirements of 

2 subsection (b). 

3 (b) REQUIREMENTS.—For purposes of subsection 

4 (a), the requirements specified in this subsection are the 

5 following: 

6 (1) Selection of the specific measure or meas7 ures for an identified provider setting shall be based 

8 on an assessment of what is likely to have the great9 est positive impact on quality of end-of-life care in 

10 that setting, and made in consultation with affected 

11 providers, patients, and private organizations, that 

12 have developed such measures. 

13 (2) The measures may be structure-oriented, 

14 process-oriented, or outcome-oriented, as determined 

15 appropriate by the Director, and shall be patient-ori16 ented. 

17 (3) The Director shall ensure that reporting re18 quirements related to such measures— 

19 (A) are imposed consistently with other ap20 plicable laws and regulations, and in a manner 

21 that takes into account existing measures, the 

22 needs of patient populations, the specific serv23 ices provided, and the potential administrative 

24 burden to providers; and 


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1 (B) include demographic information to ac2 count for race, ethnicity, age, and gender, and 

3 other appropriate categories. 

4 (4) Not later than— 

5 (A) January 1, 2024, the Secretary shall 

6 disseminate the reporting requirements to all 

7 affected providers and provide for a 60-day pe8 riod for public comment; and 

9 (B) January 1, 2026, initial reporting by 

10 health care providers relating to the measures 

11 shall begin. 

12 SEC. 114. CONTINUING EDUCATION FOR QUALIFIED 

13 HEALTH CARE PROVIDERS. 

14 (a) IN GENERAL.—Not later than January 1, 2024, 

15 the Secretary, acting through the Administrator of the 

16 Health Resources and Services Administration, shall de17 velop or enhance new and existing curricula on advance 

18 care planning and end-of-life care for continuing education 

19 that States may adopt for qualified health care providers. 

20 (b) CONSULTATION.—In carrying out subsection (a), 

21 the Secretary, acting through the Administrator of the 

22 Health Resources and Services Administration, may con23 sult with qualified health care providers, applicable profes24 sional clinician associations, institutions of higher eduVerDate Sep 11 2014 22:22 Aug 31, 2024 Jkt 049200 PO 00000 Frm 00015 Fmt 6652 Sfmt 6201 E:\BILLS\S4949.IS S4949

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1 cation, State boards of medicine and nursing, and other 

2 professionals, as the Secretary determines appropriate. 

3 (c) CONTENT.—The continuing education curriculum 

4 developed or enhanced under subsection (a) shall, at a 

5 minimum, include— 

6 (1) a description of the meaning and impor7 tance of advance care planning; 

8 (2) a description of advance care planning doc9 uments, including living wills and durable powers of 

10 attorney, and the use of such directives; 

11 (3) the appropriate use of orders for scope of 

12 treatment; 

13 (4) counseling skills for when and how to intro14 duce and engage in advance care planning with pa15 tients and their loved ones; 

16 (5) palliative care principles and approaches to 

17 care; 

18 (6) the continuum of end-of-life services and 

19 supports, including palliative care and hospice; and 

20 (7) the importance of introducing palliative care 

21 and hospice early in illness in order to improve qual22 ity of life. 


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1 Subtitle C—Medicare Amendments 

2 SEC. 121. PERMANENT EXTENSION OF AUTHORIZATION 

3 FOR USE OF TELEHEALTH TO CONDUCT 

4 FACE-TO-FACE ENCOUNTER PRIOR TO RE5 CERTIFICATION OF ELIGIBILITY FOR HOS6 PICE CARE. 

7 Section 1814(a)(7)(D)(i)(II) of the Social Security 

8 Act (42 U.S.C. 1395f(a)(7)(D)(i)(II)) is amended by 

9 striking ‘‘during the emergency period’’ and all that fol10 lows through ‘‘ending on December 31, 2024’’ and insert11 ing the following: ‘‘during and after the emergency period 

12 described in section 1135(g)(1)(B)’’. 

13 SEC. 122. IMPROVEMENTS TO ADVANCE CARE PLANNING 

14 THROUGH TELEHEALTH. 

15 Section 1834(m) of the Social Security Act (42 

16 U.S.C. 1395m(m)) is amended— 

17 (1) in paragraph (4)(C)— 

18 (A) in clause (i), in the matter preceding 

19 subclause (I), by striking ‘‘and (7)’’ and insert20 ing ‘‘(7), and (10)’’; and 

21 (B) in clause (ii)(X), by inserting ‘‘or 

22 paragraph (10)’’ before the period; and 

23 (2) by adding at the end the following new 

24 paragraph: 


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1 ‘‘(10) TREATMENT OF ADVANCE CARE PLAN2 NING SERVICES.—The geographic requirements de3 scribed in paragraph (4)(C)(i) shall not apply with 

4 respect to telehealth services furnished on or after 

5 January 1, 2024, for purposes of furnishing advance 

6 care planning services, as determined by the Sec7 retary.’’. 

8 TITLE II—REPORTS, RESEARCH, 

9 AND EVALUATIONS 

10 SEC. 201. STUDY AND REPORT BY THE SECRETARY RE11 GARDING THE ESTABLISHMENT AND IMPLE12 MENTATION OF A NATIONAL UNIFORM POL13 ICY ON ADVANCE DIRECTIVES. 

14 (a) STUDY.— 

15 (1) IN GENERAL.—The Secretary, acting 

16 through the Office of the Assistant Secretary for 

17 Planning and Evaluation, shall conduct a study to 

18 evaluate the barriers to establishing and imple19 menting a national uniform policy on advance direc20 tives and what needs to be done to overcome those 

21 barriers. 

22 (2) MATTERS STUDIED.—The matters studied 

23 by the Secretary under paragraph (1) shall include 

24 issues concerning— 


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1 (A) family satisfaction that a patient’s 

2 wishes, as stated in the patient’s advance direc3 tive, were carried out; 

4 (B) the usability, accessibility, interoper5 ability, and portability of advance directives, in6 cluding cases involving the transfer of an indi7 vidual from one health care setting to another; 

8 (C) the feasibility of establishing an op9 tional, national advance directive form deemed 

10 valid by any health care entity or qualified 

11 health care provider participating in Medicare, 

12 Medicaid, or CHIP, regardless of State law; 

13 and 

14 (D) State variations in advance directive 

15 laws that are relevant to the establishment and 

16 implementation of a national uniform policy of 

17 advance directives. 

18 (b) REPORT TO CONGRESS.—Not later than 2 years 

19 after the date of enactment of this Act, the Secretary shall 

20 submit to Congress a report on the study conducted under 

21 subsection (a), together with recommendations for such 

22 legislation and administrative actions as the Secretary 

23 considers appropriate. 

24 (c) CONSULTATION.—In conducting the study and 

25 developing the report under this section, the Secretary 


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1 shall consult with relevant stakeholders and other inter2 ested parties. 

3 SEC. 202. GAO STUDY AND REPORT ON ESTABLISHMENT OF 

4 NATIONAL ADVANCE DIRECTIVE REGISTRY; 

5 OTHER STUDIES. 

6 (a) STUDY AND REPORT ON ESTABLISHMENT OF NA7 TIONAL ADVANCE DIRECTIVE REGISTRY.— 

8 (1) STUDY.—The Comptroller General of the 

9 United States shall conduct a study on the feasi10 bility of a national registry for advance directives, 

11 taking into consideration the constraints created by 

12 the privacy provisions enacted as a result of the 

13 Health Insurance Portability and Accountability Act 

14 of 1996 (Public Law 104–191). 

15 (2) REPORT.—Not later than 18 months after 

16 the date of enactment of this Act, the Comptroller 

17 General of the United States shall submit to Con18 gress a report on the study conducted under sub19 section (a) together with recommendations for such 

20 legislation and administrative action as the Comp21 troller General of the United States determines to be 

22 appropriate. 

23 (b) ONC STUDY.—The National Coordinator of the 

24 Office of the National Coordinator for Health Information 

25 Technology shall conduct a study on the feasibility and 


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1 impact on advance care planning of requiring that elec2 tronic health record vendors seeking certification have a 

3 prominent and easily visible field for storing and sharing 

4 advance care planning documents and related clinical 

5 notes. 

6 (c) ONC DEMONSTRATION PROGRAMS.—The Na7 tional Coordinator for Health Information Technology, in 

8 collaboration with the Director of the National Institute 

9 of Standards and Technology, shall initiate 2 demonstra10 tion programs to establish best practices and rec11 ommended standards to support— 

12 (1) usability, portability and interoperability of 

13 advance directives that are accessible to individuals, 

14 clinicians, and other authorized individuals; and 

15 (2) the use of electronic signatures, electronic 

16 authentication of witnesses, and electronic notariza17 tion to effectuate advance directives. 

18 (d) ADDITIONAL STUDY.—The Comptroller General 

19 of the United States shall conduct a study and submit a 

20 report to Congress on the incidence of health care, tests, 

21 surgeries, drugs, and other services paid provided by quali22 fied health care providers and paid for by the Federal Gov23 ernment or the patient and that were not the preference 


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1 of the patient or the authorized health care agent of the 

2 patient. 

Æ 


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