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 fol-
lowing bill; which was referred to the Committee on Energy and Com-
merce, and in addition to the Committee on Ways and Means, for a pe-
riod to be subsequently determined by the Speaker, in each case for con-
sideration of such provisions as fall within the jurisdiction of the com-
mittee concerned 
A BILL 
To amend titles XVIII and XIX of the Social Security Act 
to improve end-of-life care and advanced illness management. 
Be it enacted by the Senate and House of Representa-
tives of the United States of America in Congress assembled, 
SECTION 1. SHORT TITLE; FINDINGS; TABLE OF CONTENTS. 
(a) SHORT TITLE.—This Act may be cited as the 
‘‘Personalize Your Care Act 2.0’’. 
(b) FINDINGS.—Congress finds the following: 
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(1) All individuals should be afforded the oppor-
tunity to fully participate in decisions related to 
their health care. 
(2) Care near the end of life should be person- 
and family-oriented and evidence-based. 
(3) To ensure high-quality, person-centered care 
near the end of life, care must align with an individ-
ual’s goals, values, and stated preferences. 
(4) Advance care planning plays a valuable role 
in achieving quality care by informing providers and 
family members of an individual’s treatment pref-
erences. 
(5) All clinicians who care for people with ad-
vanced serious illness should demonstrate com-
petence in basic advance care planning and palliative 
care, including communication skills, inter-profes-
sional collaboration, and symptom management. 
(6) More should be done to establish specific 
policies and programs to assist people with sensory, 
mental, and other disabilities in order to maximize 
the degree to which they are active participants in 
the decisions related to their health care, including 
training health care providers how to communicate 
with people with developmental, psychiatric, speech, 
and sensory disabilities. 
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(7) Including completed advance care planning 
documents within a patient’s electronic health record 
can increase the likelihood these documents are kept 
current and available at the right place at the right 
time. 
(8) A decade of research has demonstrated that 
physician orders for life-sustaining treatment effec-
tively convey patient preferences and guide medical 
personnel toward medical treatment aligned with pa-
tient wishes. 
(9) Patients, caregivers, families, and health 
professionals would benefit from an authoritative, 
validated list of core components to the delivery 
high-quality end-of-life care. 
(10) Palliative care, hospice, and various care 
models that integrate health care and supportive 
services provide high-quality end-of-life care and re-
duce the use of avoidable hospital- and institution- 
based services that the patient does not want. 
(c) TABLE OF CONTENTS.—The table of contents of 
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. 
SEC. 2. ADVANCED ILLNESS MANAGEMENT AND CHOICES 
CARE MODEL DEMONSTRATION PROGRAM. 
(a) IN GENERAL.—The Secretary of Health and 
Human Services (in this section referred to as the ‘‘Sec-
retary’’) shall establish a 3-year demonstration program 
(in this section referred to as the ‘‘demonstration pro-
gram’’) to test the use of advanced illness management 
and early use of palliative care under the Medicare pro-
gram. The Secretary may extend the program to a dura-
tion of 4 or 5 years, as determined necessary by the Sec-
retary in coordination with the Centers for Medicare and 
Medicaid Innovation. 
(b) DEMONSTRATION PROGRAM DESIGN.—Under the 
demonstration program the Secretary shall establish a 
capitated payment for the payment of advanced illness 
management services and the early use of palliative care 
consistent with the following: 
(1) The services and care are furnished to indi-
viduals who— 
(A) reside at home or in an institutional 
setting; 
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(B) have a documented medical prognosis 
that the individual’s life expectancy is 24 
months or less; and 
(C) have the need for assistance with two 
or more activities of daily living or meet such 
other criteria as the Secretary may specify. 
(2) The services and care are furnished concur-
rently with the receipt of services related to the 
treatment of the individual’s condition with respect 
to which a diagnosis of terminal illness has been 
made. 
(3) The services and care include at least hos-
pice care (as defined in section 1861(dd)(1) of the 
Social Security Act), a functional assessment of the 
individual and of the family caregiver (as appro-
priate), in-home services and supports, 24-hour, 7- 
day-a-week emergency supports, care coordination 
and communication across settings and providers, 
and such other palliative care services as the Sec-
retary deems necessary. 
(4) The services and care are furnished by an 
interdisciplinary team that includes primary care 
providers, palliative medicine specialists, palliative 
nurses, social workers, chaplains, pharmacists, dieti-
cians, physical therapists, occupational therapists, 
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psychotherapists, and such others as the Secretary 
deems necessary and appropriate. 
(c) TIMELY IMPLEMENTATION.—The Secretary of 
Health and Human Services shall implement a capitated 
payment model for the payment of advanced illness man-
agement services under subsection (a) not later than 2 
years after the date of the enactment of this Act. 
SEC. 3. GRANTS FOR PROGRAMS FOR ORDERS FOR LIFE- 
SUSTAINING TREATMENT AND SIMILAR PRO-
VIDER OR MEDICAL ORDERS. 
(a) IN GENERAL.—The Secretary of Health and 
Human Services shall make grants to eligible entities for 
the purpose of developing, expanding, and enhancing pro-
grams for orders for life-sustaining treatment (as defined 
in subsection (c)(2)). 
(b) AUTHORIZED
ACTIVITIES.—Activities funded 
through a grant under this section for an area may in-
clude— 
(1) developing such a program for the area that 
includes hospitals, home care, hospice, long-term 
care, community and assisted living residences, 
skilled nursing facilities, and emergency medical 
services within a State; 
(2) expanding an existing program for orders 
regarding life-sustaining treatment to serve more pa-
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