I 

114TH CONGRESS 

2D SESSION H. R. 5555 

To amend titles XVIII and XIX of the Social Security Act to improve 

end-of-life care and advanced illness management. 

IN THE HOUSE OF REPRESENTATIVES 

JUNE 22, 2016 

Mr. BLUMENAUER (for himself and Mr. ROE of Tennessee) introduced the following bill; which was referred to the Committee on Energy and Commerce, and in addition to the Committee on Ways and Means, for a period to be subsequently determined by the Speaker, in each case for consideration of such provisions as fall within the jurisdiction of the committee concerned 

A BILL 

To amend titles XVIII and XIX of the Social Security Act 

to improve end-of-life care and advanced illness management. 

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; FINDINGS; TABLE OF CONTENTS. 

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

5 ‘‘Personalize Your Care Act 2.0’’. 

6 (b) FINDINGS.—Congress finds the following: 


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1 (1) All individuals should be afforded the oppor2 tunity to fully participate in decisions related to 

3 their health care. 

4 (2) Care near the end of life should be person5 and family-oriented and evidence-based. 

6 (3) To ensure high-quality, person-centered care 

7 near the end of life, care must align with an individ8 ual’s goals, values, and stated preferences. 

9 (4) Advance care planning plays a valuable role 

10 in achieving quality care by informing providers and 

11 family members of an individual’s treatment pref12 erences. 

13 (5) All clinicians who care for people with ad14 vanced serious illness should demonstrate com15 petence in basic advance care planning and palliative 

16 care, including communication skills, inter-profes17 sional collaboration, and symptom management. 

18 (6) More should be done to establish specific 

19 policies and programs to assist people with sensory, 

20 mental, and other disabilities in order to maximize 

21 the degree to which they are active participants in 

22 the decisions related to their health care, including 

23 training health care providers how to communicate 

24 with people with developmental, psychiatric, speech, 

25 and sensory disabilities. 


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1 (7) Including completed advance care planning 

2 documents within a patient’s electronic health record 

3 can increase the likelihood these documents are kept 

4 current and available at the right place at the right 

5 time. 

6 (8) A decade of research has demonstrated that 

7 physician orders for life-sustaining treatment effec8 tively convey patient preferences and guide medical 

9 personnel toward medical treatment aligned with pa10 tient wishes. 

11 (9) Patients, caregivers, families, and health 

12 professionals would benefit from an authoritative, 

13 validated list of core components to the delivery 

14 high-quality end-of-life care. 

15 (10) Palliative care, hospice, and various care 

16 models that integrate health care and supportive 

17 services provide high-quality end-of-life care and re18 duce the use of avoidable hospital- and institution19 based services that the patient does not want. 

20 (c) TABLE OF CONTENTS.—The table of contents of 

21 this Act is as follows: 

Sec. 1. Short title; findings; table of contents. 

Sec. 2. Advanced illness management and choices care model demonstration 

program. 

Sec. 3. Grants for programs for orders for life-sustaining treatment and similar 

provider or medical orders. 

Sec. 4. Advance care planning standards for electronic health records. 

Sec. 5. Portability of advance directives. 

Sec. 6. Application of quality measures under Medicare relating to end-of-life 

care. 


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Sec. 7. Annual report on Medicare decedents. 

Sec. 8. Grants to increase public awareness of advance care planning. 

Sec. 9. Advance care planning and palliative care education and training. 

Sec. 10. Advance Care Planning Advisory Council. 

1 SEC. 2. ADVANCED ILLNESS MANAGEMENT AND CHOICES 

2 CARE MODEL DEMONSTRATION PROGRAM. 

3 (a) IN GENERAL.—The Secretary of Health and 

4 Human Services (in this section referred to as the ‘‘Sec5 retary’’) shall establish a 3-year demonstration program 

6 (in this section referred to as the ‘‘demonstration pro7 gram’’) to test the use of advanced illness management 

8 and early use of palliative care under the Medicare pro9 gram. The Secretary may extend the program to a dura10 tion of 4 or 5 years, as determined necessary by the Sec11 retary in coordination with the Centers for Medicare and 

12 Medicaid Innovation. 

13 (b) DEMONSTRATION PROGRAM DESIGN.—Under the 

14 demonstration program the Secretary shall establish a 

15 capitated payment for the payment of advanced illness 

16 management services and the early use of palliative care 

17 consistent with the following: 

18 (1) The services and care are furnished to indi19 viduals who— 

20 (A) reside at home or in an institutional 

21 setting; 


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1 (B) have a documented medical prognosis 

2 that the individual’s life expectancy is 24 

3 months or less; and 

4 (C) have the need for assistance with two 

5 or more activities of daily living or meet such 

6 other criteria as the Secretary may specify. 

7 (2) The services and care are furnished concur8 rently with the receipt of services related to the 

9 treatment of the individual’s condition with respect 

10 to which a diagnosis of terminal illness has been 

11 made. 

12 (3) The services and care include at least hos13 pice care (as defined in section 1861(dd)(1) of the 

14 Social Security Act), a functional assessment of the 

15 individual and of the family caregiver (as appro16 priate), in-home services and supports, 24-hour, 7- 

17 day-a-week emergency supports, care coordination 

18 and communication across settings and providers, 

19 and such other palliative care services as the Sec20 retary deems necessary. 

21 (4) The services and care are furnished by an 

22 interdisciplinary team that includes primary care 

23 providers, palliative medicine specialists, palliative 

24 nurses, social workers, chaplains, pharmacists, dieti25 cians, physical therapists, occupational therapists, 


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1 psychotherapists, and such others as the Secretary 

2 deems necessary and appropriate. 

3 (c) TIMELY IMPLEMENTATION.—The Secretary of 

4 Health and Human Services shall implement a capitated 

5 payment model for the payment of advanced illness man6 agement services under subsection (a) not later than 2 

7 years after the date of the enactment of this Act. 

8 SEC. 3. GRANTS FOR PROGRAMS FOR ORDERS FOR LIFE9 SUSTAINING TREATMENT AND SIMILAR PRO10 VIDER OR MEDICAL ORDERS. 

11 (a) IN GENERAL.—The Secretary of Health and 

12 Human Services shall make grants to eligible entities for 

13 the purpose of developing, expanding, and enhancing pro14 grams for orders for life-sustaining treatment (as defined 

15 in subsection (c)(2)). 

16 (b) AUTHORIZED ACTIVITIES.—Activities funded 

17 through a grant under this section for an area may in18 clude— 

19 (1) developing such a program for the area that 

20 includes hospitals, home care, hospice, long-term 

21 care, community and assisted living residences, 

22 skilled nursing facilities, and emergency medical 

23 services within a State; 

24 (2) expanding an existing program for orders 

25 regarding life-sustaining treatment to serve more paVerDate Sep 11 2014 00:17 Jun 25, 2016 Jkt 059200 PO 00000 Frm 00006 Fmt 6652 Sfmt 6201 E:\BILLS\H5555.IH H5555

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1 tients or enhance the quality of services, including 

2 educational services for patients and patients’ fami3 lies, training of health care professionals, or estab4 lishing an orders for life-sustaining treatment reg5 istry; and 

6 (3) technical assistance and professional train7 ing. 

8 (c) DEFINITIONS.—In this section: 

9 (1) The term ‘‘eligible entity’’ includes— 

10 (A) an academic medical center, a medical 

11 school, a State health department, a State med12 ical association, a multistate task force, a hos13 pital, or a health system capable of admin14 istering a program for physician orders regard15 ing life-sustaining treatment for a State; or 

16 (B) any other health care agency or entity 

17 as the Secretary determines appropriate. 

18 (2) The term ‘‘program for orders for life-sus19 taining treatment’’ means a program that, regard20 less of its name— 

21 (A) implements a clinical process designed 

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

24 professionals and patients with serious, progres25 sive illness or frailty and results in a set of 


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1 medical orders that are substantially consistent 

2 with the national standard and that— 

3 (i) are portable and honored across 

4 care settings; and 

5 (ii) address key medical decisions con6 sistent with the patient’s goals of care; and 

7 (B) is guided by a coalition of stake8 holders, such as patient advocacy groups and 

9 representatives from across the continuum of 

10 health care services, disability rights advocates, 

11 senior advocates, emergency medical services, 

12 long-term care, medical associations, hospitals, 

13 home health, hospice, nursing associations, the 

14 State agency responsible for senior and dis15 ability services, faith-based groups, and the 

16 State department of health. 

17 (3) The term ‘‘Secretary’’ means the Secretary 

18 of Health and Human Services. 

19 (d) AUTHORIZATION OF APPROPRIATIONS.—To carry 

20 out this section, there are authorized to be appropriated 

21 $35,000,000 for the 5-fiscal-year period beginning with 

22 fiscal year 2017, to remain available until expended. 


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1 SEC. 4. ADVANCE CARE PLANNING STANDARDS FOR ELEC2 TRONIC HEALTH RECORDS. 

3 (a) IN GENERAL.—Notwithstanding section 

4 3004(b)(3) of the Public Health Service Act (42 U.S.C. 

5 300jj–14(b)(3)), not later than 4 years after the date of 

6 the enactment of this Act, the Secretary of Health and 

7 Human Services shall adopt, by rule, standards for a 

8 qualified electronic health record (as defined in section 

9 3000(13) of such Act (42 U.S.C. 300jj(13)), with respect 

10 to organizing patient communications with health care 

11 providers about care goals and to provide one-click access 

12 to the following: 

13 (1) The patient’s current advance directive (as 

14 defined in section 1866(f)(3) of the Social Security 

15 Act (42 U.S.C. 1395cc(f)(3)), as applicable. 

16 (2) The patient’s current order for life-sus17 taining treatment (described in section 3(c)(2)(A)), 

18 as applicable. 

19 (3) Documentation of advance care planning 

20 discussion between the patient and the provider. 

21 (b) TREATMENT OF STANDARDS.—A standard adopt22 ed under subsection (a) shall be treated as a standard 

23 adopted under section 3004 of the Public Health Service 

24 Act (42 U.S.C. 300jj–14) for purposes of certifying quali25 fied electronic health records pursuant to section 

26 3001(c)(5) of such Act (42 U.S.C. 300jj–11(c)(5)). 


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1 SEC. 5. PORTABILITY OF ADVANCE DIRECTIVES. 

2 (a) IN GENERAL.—Section 1866(f) of the Social Se3 curity Act (42 U.S.C. 1395cc(f)) is amended by adding 

4 at the end the following new paragraph: 

5 ‘‘(5)(A) An advance directive validly executed outside 

6 the State in which such directive is presented must be 

7 given effect by a provider of services or organization to 

8 the same extent as an advance directive validly executed 

9 under the law of the State in which it is presented. 

10 ‘‘(B) In the absence of knowledge to the contrary, 

11 a physician or other health care provider or organization 

12 may presume that a written advance health care directive 

13 or similar instrument, regardless of where executed, is 

14 valid. 

15 ‘‘(C) In the absence of a validly executed advance di16 rective, any authentic expression of a person’s wishes with 

17 respect to health care shall be honored. 

18 ‘‘(D) The provisions of this paragraph shall preempt 

19 any State law on advance directive portability to the extent 

20 such law is inconsistent with such provisions. Nothing in 

21 the paragraph shall be construed to authorize the adminis22 tration of health care treatment otherwise prohibited by 

23 the laws of the State in which the directive is presented.’’. 

24 (b) GAO STUDY ON HEALTH CARE DECISIONMAKING

25 LAWS AND BARRIERS TO THE USE OF ADVANCE DIREC26 TIVES.— 


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

2 United States shall conduct a study that examines 

3 the use, portability, and electronic storage of ad4 vance directives and that identifies barriers towards 

5 adopting, using, and following advance directives in 

6 the clinical setting. Such examination shall include 

7 issues that remain unresolved after the Stage 3 

8 Meaningful Use final rule, including barriers and so9 lutions to finding and accessing advance care plan10 ning documents, best practices for alerting eligible 

11 providers to the presence of an advance care plan, 

12 and best practices for transmitting advance care 

13 plans across sites of care. 

14 (2) REPORT.—Not later than 1 year after the 

15 date of the enactment of this Act, the Comptroller 

16 General shall submit to Congress a report on the 

17 study conducted under paragraph (1) and shall in18 clude in the report such recommendations regarding 

19 improving advance health care planning as the 

20 Comptroller General deems appropriate. 

21 SEC. 6. APPLICATION OF QUALITY MEASURES UNDER 

22 MEDICARE RELATING TO END-OF-LIFE CARE. 

23 (a) INCORPORATING END-OF-LIFE CARE SUB24 DOMAINS WITHIN QUALITY DOMAINS UNDER MEDICARE

25 PHYSICIAN FEE SCHEDULE.—Section 1848(s)(1) of the 


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1 Social Security Act (42 U.S.C. 1395w–4(s)(1)) is amend2 ed by adding at the end the following new subparagraph: 

3 ‘‘(G) END-OF-LIFE SUBDOMAINS RELATING

4 TO QUALITY DOMAINS.—Within one or more ap5 propriate quality domains, the Secretary shall 

6 establish subdomains relating to end-of-life 

7 care, including subdomains relating to each of 

8 the following: 

9 ‘‘(i) The process of eliciting and docu10 menting goals, preferences, and values of 

11 the patient (and, where relevant and ap12 propriate, family caregiver) regarding end13 of-life care from the patient or from a le14 gally authorized representative, including 

15 the articulation of goals that accurately re16 flect how the patient wants to live. 

17 ‘‘(ii) The effectiveness, patient-cen18 teredness (and, where relevant, family 

19 caregiver-centeredness), and accuracy of 

20 end-of-life care plans, including docu21 mentation of individual goals, preferences, 

22 and values. 

23 ‘‘(iii) Agreement and consistency with 

24 respect to end-of-life care among— 


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1 ‘‘(I) patient’s goals, values, and 

2 preferences; 

3 ‘‘(II) any documented care plan; 

4 and 

5 ‘‘(III) the care delivered.’’. 

6 (b) INCORPORATING QUALITY MEASURES ON END7 OF-LIFE CARE FOR POST-ACUTE CARE (PAC).—Section 

8 1899B of the Social Security Act (42 U.S.C. 1395lll) is 

9 amended— 

10 (1) in subsection (a)(2)(E)(i)— 

11 (A) by striking ‘‘and’’ at the end of sub12 clause (IV); 

13 (B) by striking the period at the end of 

14 subclause (V) and inserting ‘‘; and’’; and 

15 (C) by adding at the end the following new 

16 subclause: 

17 ‘‘(VI) with respect to the domain 

18 described in subsection (c)(1)(F) (re19 lating to end-of-life care)— 

20 ‘‘(aa) for PAC providers de21 scribed in clauses (ii), (iii), and 

22 (iv) of paragraph (2)(A), October 

23 1, 2018; and 

24 ‘‘(bb) for PAC providers de25 scribed in clauses (i) of such 


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1 paragraph, January 1, 2019.’’; 

2 and 

3 (2) in subsection (c)(1), by adding at the end 

4 the following new subparagraph: 

5 ‘‘(F) The effectiveness, patient-centered6 ness (and, where relevant, family caregiver-cen7 teredness), and accuracy of end-of-life care 

8 plans and communications relating to such 

9 plans, including— 

10 ‘‘(i) documentation of a patient’s 

11 goals, preferences, and values; and 

12 ‘‘(ii) agreement and consistency with 

13 respect to end-of-life care among— 

14 ‘‘(I) patient’s goals, values, and 

15 preferences; 

16 ‘‘(II) any documented care plan; 

17 and 

18 ‘‘(III) the care delivered.’’. 

19 SEC. 7. ANNUAL REPORT ON MEDICARE DECEDENTS. 

20 The Secretary of Health and Human Services shall 

21 issue for each fiscal year (beginning no later than fiscal 

22 year 2018) an annual report that analyzes the cir23 cumstances of Medicare beneficiaries who died during the 

24 fiscal year covered by such report. Such analysis shall in25 clude at least the following with respect to such decedents: 


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1 (1) Information on the care or payor settings 

2 (such as under part A or part C of Medicare) at the 

3 time of death. 

4 (2) Information on the demographic character5 istics of such decedents. 

6 (3) Information on the geographic distribution 

7 of such decedents. 

8 (4) An evaluation of the Medicare claims data 

9 for such decedents for services furnished in the last 

10 year of life, including an analysis of the setting of 

11 care for decedents who had more than one chronic 

12 illness at the time of death. 

13 (5) Such other information as the Secretary 

14 deems appropriate. 

15 SEC. 8. GRANTS TO INCREASE PUBLIC AWARENESS OF AD16 VANCE CARE PLANNING. 

17 (a) IN GENERAL.—The Secretary of Health and 

18 Human Services shall award grants to increase public 

19 awareness of advance care planning. Such grants shall be 

20 awarded under such terms and conditions as the Secretary 

21 shall specify. 

22 (b) TYPES OF GRANTS.—Grants under this section 

23 may provide for the development of— 

24 (1) decision support tools and instructional ma25 terials for individuals, family caregivers, and health 


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1 care providers that include the importance of plan2 ning for treatment decisions, discussing values and 

3 goals related to catastrophic injury or illness, and 

4 completing an advance directive; and 

5 (2) materials for individuals that presents the 

6 importance of articulating goals of care, under7 standing disease diagnosis and prognosis, evaluating 

8 treatment options, and developing a plan of care, 

9 and documenting the treatment plan. 

10 (c) AUTHORIZATION OF APPROPRIATIONS.—There 

11 are authorized to be appropriated to carry out this section 

12 for the 5-fiscal-year period beginning with fiscal year 2017 

13 $20,000,000, to remain available until expended. 

14 SEC. 9. ADVANCE CARE PLANNING AND PALLIATIVE CARE 

15 EDUCATION AND TRAINING. 

16 (a) IN GENERAL.—The Secretary of Health and 

17 Human Services shall award grants to eligible entities to 

18 develop and implement programs and initiatives to train 

19 and educate individuals to provide advance care planning, 

20 advance illness care, hospice care, and palliative care in 

21 hospital, hospice, home, community, and long-term care 

22 settings. 

23 (b) ELIGIBLE ENTITIES.—For purposes of this sec24 tion, eligible entities may be a medical school, a nursing 


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1 school, a health care system, non-profit organization, or 

2 other entity the Secretary deems appropriate. 

3 (c) USE OF FUNDS.—Funding under grants awarded 

4 under this section shall be used— 

5 (1) to provide training and continuing edu6 cation to individuals who will provide advance care 

7 planning services or palliative care in the hospital, 

8 hospice, home, community, and long-term care set9 tings; and 

10 (2) to develop curricula or teaching materials 

11 related to advance care planning or palliative care in 

12 such settings. 

13 (d) AUTHORIZATION OF APPROPRIATIONS.—There 

14 are authorized to be appropriated to carry out this section 

15 for the 5-fiscal-year period beginning with fiscal year 2017 

16 $20,000,000, to remain available until expended. 

17 SEC. 10. ADVANCE CARE PLANNING ADVISORY COUNCIL. 

18 (a) ESTABLISHMENT.—Not later than 180 days after 

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

20 Health and Human Services (in this section referred to 

21 as the ‘‘Secretary’’) shall establish within the Office of the 

22 Secretary an advisory committee to be known as the Ad23 vance Care Planning Advisory Council (in this section re24 ferred to as the ‘‘Council’’). 

25 (b) DUTIES.— 


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1 (1) MISSION.—The Council shall advise the 

2 Secretary regarding the compilation, development, 

3 and dissemination of resources for individuals facing 

4 advanced and terminal illness. 

5 (2) RESPONSIBILITIES.—Responsibilities of the 

6 council include the following: 

7 (A) Ensuring that resources provided con8 tain non-biased information about the range of 

9 options available to individuals with advance 

10 and terminal illness, including information 

11 about conventional, curative treatments, pallia12 tive care, and hospice care. 

13 (B) Developing strategies for increasing 

14 public understanding about advanced illness 

15 and the important role advance care planning 

16 can play in documenting an individual’s wishes 

17 for medical care for loved ones in the event that 

18 individual cannot communicate the individual’s 

19 his or her wishes. 

20 (C) Compiling information for dissemina21 tion regarding existing advance care planning 

22 models including POLST, MOLST, advance di23 rectives, and healthcare proxies. 

24 (D) Promoting interagency coordination 

25 and minimizing overlap regarding advance care 


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1 planning, including opportunities to coordinate 

2 efforts between the Federal agencies and exter3 nal stakeholders. 

4 (E) Identifying and evaluating cross-cut5 ting issues such as perinatal end-of-life care 

6 and advance care planning access issues. 

7 (c) MEMBERSHIP.— 

8 (1) IN GENERAL.—The Council shall be com9 posed of up to 15 members appointed by the Sec10 retary from among qualified individuals who are not 

11 officers or employees of the Federal Government. 

12 (2) GROUPS.—The members of the Council 

13 shall include the following: 

14 (A) At least 3 members with clinical train15 ing and an expertise in advanced illness or end16 of-life care. 

17 (B) At least 3 members from patient and 

18 family advocacy groups. 

19 (C) At least 3 members from religious or 

20 spiritual organizations. 

21 (D) Other members from interested stake22 holder groups with a proven expertise in chron23 ic, advanced, and end-of-life care. 


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1 (d) APPLICABILITY OF FACA.—The Council shall be 

2 treated as an advisory committee subject to the Federal 

3 Advisory Committee Act (5 U.S.C. App.). 

Æ 


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