PALLIATIVE CARE ACT

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104TH GENERAL ASSEMBLY
State of Illinois
2025 and 2026
HB5476

Introduced 2/13/2026, by Rep. Nicolle Grasse

SYNOPSIS AS INTRODUCED:

New Act

Creates the Palliative Care and Quality of Life Act. Provides that the
Department of Public Health shall, no later than January 1, 2027, publish
proposed rules to implement the Act, and shall make a good faith effort to
consult with affected provider groups, advocate organizations, and other
individuals and groups identified by the Department to be critical to the
development of applicable rules. Provides that a community-based
palliative care provider shall make available the specified services to
adult patients pursuant to rules adopted by the Department. Establishes
compliance requirements following the adoption of rules implementing the
Act. Sets forth provisions concerning provider entity standards, penalties
for violations of the Act, the palliative care work group, and the
Palliative Care Public Awareness and Education Program.
LRB104 17553 BAB 30981 b

A BILL FOR

HB5476
LRB104 17553 BAB 30981 b
1

AN ACT concerning regulation.

2

Be it enacted by the People of the State of Illinois,
3
represented in the General Assembly:

4

Section 1.
Short title.
This Act may be cited as the
5
Palliative Care and Quality of Life Act.

6

Section 5.
Findings; legislative intent.
7

(a) The General Assembly finds that:
8

(1) Establishing minimum standards for community-based
9

palliative care services for adults is in the best
10

interest of individuals diagnosed with a serious illness.
11

(2) State standards will help these individuals
12

maintain the highest possible quality of life while
13

receiving treatment for a serious illness, which also
14

supports their families and caregivers.
15

(b) It is the intent of the General Assembly that all
16
non-hospice palliative care services delivered outside of a
17
hospital or office-based clinic shall comply with rules
18
adopted by the Department in compliance with this Act.

19

Section 10.
Definitions.
In this Act:
20

"Advanced practice provider" means an advanced practice
21
registered nurse or a physician assistant.
22

"Community-based palliative care" means palliative care

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services delivered in any setting that is outside of a
2
hospital.
3

"Department" means the Department of Public Health.
4

"Interdisciplinary team" means a group of professionals
5
from diverse fields who collaborate to achieve a common goal
6
by combining their expertise, perspectives, and skills to
7
address complex challenges or deliver comprehensive care,
8
ensuring that all aspects of a patient's situation are
9
considered and managed effectively.
10

"Palliative care" means care focused on expert assessment
11
and management of pain and other symptoms, assessment and
12
support of caregiver needs, and coordination of care, which
13
facilitates autonomy by providing access to information and
14
choice about medical treatment. Palliative care attends to the
15
physical, functional, psychological, practical, and spiritual
16
impact of a serious illness. It is a person-centered and
17
family-centered approach to care, providing people living with
18
serious illness relief from the symptoms and stress of an
19
illness. Through early integration into the care plan for the
20
seriously ill, palliative care improves quality of life for
21
the patient and family. Palliative care can be offered in all
22
care settings and at any stage in a serious illness through
23
collaboration of many types of care providers.
24

"Program" means the Palliative Care Public Awareness and
25
Education Program created under this Act.
26

"Qualifying patient" means a person over 20 years of age

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who: (i) does not qualify for hospice, (ii) is diagnosed with a
2
serious illness by a physician licensed to practice medicine
3
in all its branches or an advanced practice provider acting
4
within the provider's license and scope of practice, and (iii)
5
demonstrates evidence of progressive or ongoing functional
6
decline, as determined by the Department by rule and in
7
consultation with interested stakeholders. "Qualifying
8
patient" includes an individual who is medically eligible for
9
the hospice benefit but who does not enroll in hospice for
10
various reasons.
11

"Serious illness" means a health condition that carries a
12
high risk of mortality and either negatively impacts a
13
person's daily function or quality of life or excessively
14
strains the person's caregiver, as demonstrated by criteria
15
determined by the Department in consultation with interested
16
stakeholders.

17

Section 15.
Applicability.
Programs covered by this Act
18
include, but are not limited to, health care facilities
19
licensed or certified by the Assisted Living and Shared
20
Housing Act; the Life Care Facilities Act; the Nursing Home
21
Care Act; the Specialized Mental Health Rehabilitation Act of
22
2013; the Home Health, Home Services, and Home Nursing Agency
23
Licensing Act; and the Hospice Program Licensing Act. This Act
24
does not apply to physicians licensed to practice medicine in
25
all its branches or advanced practice registered nurses who

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provide care only in an office-based clinic.

2

Section 20.
Rules.
3

(a) The Department shall, no later than January 1, 2027,
4
publish proposed rules to implement this Act.
5

(b) The Department shall make a good faith effort to
6
consult with affected provider groups, advocate organizations,
7
and other individuals and groups identified by the Department
8
to be critical to the development of applicable rules.
9

(c) Rules adopted pursuant to this Act shall not exceed
10
the minimum requirements necessary to ensure patient safety
11
and quality care and shall avoid imposing undue administrative
12
burden.

13

Section 25.
Standard services.
A community-based
14
palliative care provider shall make available the following
15
services to adult patients pursuant to rules adopted by the
16
Department:
17

(1) Comprehensive, interdisciplinary palliative care
18

assessments and individualized plans for care.
19

(2) Advance care planning, including goals of care
20

discussions and assistance with the completion of advance
21

directive documents and Physicians Orders for Life
22

Sustaining Treatment (POLST), if requested by the patient.
23

(3) Assessments and management of pain and non-pain
24

symptoms.

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(4) Assessments and management of behavioral health
2

and psychosocial needs related to the serious illness.
3

(5) Care coordination.
4

(6) Education of patients and caregivers to address
5

the management of serious illness at home.
6

(7) Provision of or access to social services,
7

community resources, and caregiver support.
8

(8) Provision of or access to spiritual care.

9

Section 30.
Covered services; disclosures; prohibition;
10
preemption.
11

(a) Upon the adoption of rules implementing this Act:
12

(1) Any and all community-based palliative care
13

services for adults shall comply with the standards in
14

Section 25, except as provided in subsection (b).
15

(2) Materials describing the philosophy of the
16

services, specific services offered, and members of the
17

interdisciplinary team shall be provided to the patient or
18

the patient's agent during the first contact with the
19

patient, or earlier upon request.
20

(3) Advertising or verbally offering to provide
21

community-based palliative care services for adults that
22

are not in compliance with this Act is prohibited.
23

(b) If any provision of this Act conflicts with the
24
provisions of the Assisted Living and Shared Housing Act, the
25
Life Care Facilities Act, the Nursing Home Care Act, the

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Specialized Mental Health Rehabilitation Act of 2013, the Home
2
Health, Home Services, and Home Nursing Agency Licensing Act,
3
or the Hospice Program Licensing Act, then the provisions of
4
the Assisted Living and Shared Housing Act, the Life Care
5
Facilities Act, the Nursing Home Care Act, the Specialized
6
Mental Health Rehabilitation Act of 2013, the Home Health,
7
Home Services, and Home Nursing Agency Licensing Act, and the
8
Hospice Program Licensing Act shall control.

9

Section 35.
Provider entity standards.
10

(a) All providers on the interdisciplinary team shall have
11
appropriate levels of education and licensure where required.
12

(b) Adult patients receiving community-based palliative
13
care services shall receive care from an interdisciplinary
14
team of providers that shall include: (i) a physician licensed
15
to practice medicine in all its branches or an advanced
16
practice provider and (ii) a social worker who may be a
17
licensed social worker or licensed clinical social worker.
18

(1) At least one member of the interdisciplinary team
19

shall be employed, full-time or part-time, by the provider
20

entity. Other members may be contracted by the provider
21

entity.
22

(2) All members of the interdisciplinary team must
23

meet professional education, experience, and training
24

criteria the Department shall establish by rule.
25

(c) Optional interdisciplinary providers may include a

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registered nurse, pharmacist, spiritual counselor, mental
2
health counselor or family therapist, occupational or physical
3
therapist or speech therapist, expressive therapist, home care
4
assistant, or nutritionist.

5

Section 40.
Penalties.
6

(a) Any entity licensed, certified, or regulated by the
7
State that knowingly holds itself out as a provider of
8
community-based palliative care services for adults and fails
9
to comply with this Act is deemed to have violated the statute
10
or statutes governing the licensure, certification, or
11
regulation of the entity and any contract or agreement the
12
entity has with the State.
13

(b) Any entity not operated by the federal government or
14
any agency thereof or individual not covered by subsection (a)
15
that knowingly holds himself, herself, or itself out as a
16
provider of community-based palliative care services for
17
adults and fails to comply with this Act is guilty of a
18
business offense punishable by a fine of at least $1,001.

19

Section 45.
Palliative care work group; assessment.
20

(a) Twenty-four months after the adoption of rules
21
implementing this Act, the Department shall convene a work
22
group made up of experts in serious illness and palliative
23
care, providers, families and caregivers, and other interested
24
parties to assess the understanding of and compliance with

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LRB104 17553 BAB 30981 b
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this Act and its rules.
2

(b) The assessment shall focus on barriers to
3
implementation, access disparities, and the impact of
4
regulations on provider participation. The Department may
5
collect anonymized data on community-based palliative care
6
services including patient demographics, services utilized,
7
provider disciplines involved, and patient outcomes.
8

(c) The work group shall provide the Director and General
9
Assembly with recommendations related to this Act and the
10
rules implementing this Act. Once the recommendations are
11
submitted, the work group shall be disbanded.

12

Section 50.
Billing and reimbursement.
Nothing in this Act
13
shall limit a health care provider's ability to bill or
14
receive reimbursement for palliative care services under
15
Medicaid, Medicare, or commercial insurance.

16

Section 55.
Palliative Care Public Awareness and Education
17
Program.
18

(a) Subject to appropriation, the Department shall
19
establish a Palliative Care Awareness and Education Program.
20

(b) The purpose of the Program is to promote public
21
awareness of palliative care and the resources available.
22

(c) The Program shall include the following:
23

(1) Development of a public education and outreach
24

campaign to promote palliative care awareness and

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education, including, but not limited to, the following
2

subjects:
3

(A) criteria for qualifying patients;
4

(B) criteria for serious illnesses;
5

(C) the various palliative care services offered;
6

and
7

(D) availability of palliative care services in
8

the community.
9

(2) Development of educational materials to be made
10

available to consumers through local physicians,
11

hospitals, clinics, nursing homes, and boards of health.
12

(3) Development of professional education programs for
13

health care professionals to assist them in understanding
14

the role of palliative care and the availability of
15

palliative care services in the community.
16

(4) Development and maintenance of a list of current
17

providers of palliative care services in the State.

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