Bill Text: IL HB5476 | 2025-2026 | 104th General Assembly | Introduced

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Bill Title: 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.

Sponsorship: Partisan Bill (Democrat 1)

Status: (Introduced - Dead) 2026-02-13 - Referred to Rules Committee [HB5476 Detail]

Download: Illinois-2025-HB5476-Introduced.html

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104TH GENERAL ASSEMBLY State of Illinois 2025 and 2026HB5476 Introduced , 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
AN ACT concerning regulation.
Be it enacted by the People of the State of Illinois,
represented in the General Assembly:
Section 1. Short title. This Act may be cited as the
Palliative Care and Quality of Life Act.
Section 5. Findings; legislative intent.
(a) The General Assembly finds that:
(1) Establishing minimum standards for community-based
palliative care services for adults is in the best
interest of individuals diagnosed with a serious illness.
(2) State standards will help these individuals
maintain the highest possible quality of life while
receiving treatment for a serious illness, which also
supports their families and caregivers.
(b) It is the intent of the General Assembly that all
non-hospice palliative care services delivered outside of a
hospital or office-based clinic shall comply with rules
adopted by the Department in compliance with this Act.
Section 10. Definitions. In this Act:
"Advanced practice provider" means an advanced practice
registered nurse or a physician assistant.
"Community-based palliative care" means palliative care

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services delivered in any setting that is outside of a
hospital.
"Department" means the Department of Public Health.
"Interdisciplinary team" means a group of professionals
from diverse fields who collaborate to achieve a common goal
by combining their expertise, perspectives, and skills to
address complex challenges or deliver comprehensive care,
ensuring that all aspects of a patient's situation are
considered and managed effectively.
"Palliative care" means care focused on expert assessment
and management of pain and other symptoms, assessment and
support of caregiver needs, and coordination of care, which
facilitates autonomy by providing access to information and
choice about medical treatment. Palliative care attends to the
physical, functional, psychological, practical, and spiritual
impact of a serious illness. It is a person-centered and
family-centered approach to care, providing people living with
serious illness relief from the symptoms and stress of an
illness. Through early integration into the care plan for the
seriously ill, palliative care improves quality of life for
the patient and family. Palliative care can be offered in all
care settings and at any stage in a serious illness through
collaboration of many types of care providers.
"Program" means the Palliative Care Public Awareness and
Education Program created under this Act.
"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
serious illness by a physician licensed to practice medicine
in all its branches or an advanced practice provider acting
within the provider's license and scope of practice, and (iii)
demonstrates evidence of progressive or ongoing functional
decline, as determined by the Department by rule and in
consultation with interested stakeholders. "Qualifying
patient" includes an individual who is medically eligible for
the hospice benefit but who does not enroll in hospice for
various reasons.
"Serious illness" means a health condition that carries a
high risk of mortality and either negatively impacts a
person's daily function or quality of life or excessively
strains the person's caregiver, as demonstrated by criteria
determined by the Department in consultation with interested
stakeholders.
Section 15. Applicability. Programs covered by this Act
include, but are not limited to, health care facilities
licensed or certified by the Assisted Living and Shared
Housing Act; the Life Care Facilities Act; the Nursing Home
Care Act; the Specialized Mental Health Rehabilitation Act of
2013; the Home Health, Home Services, and Home Nursing Agency
Licensing Act; and the Hospice Program Licensing Act. This Act
does not apply to physicians licensed to practice medicine in
all its branches or advanced practice registered nurses who

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provide care only in an office-based clinic.
Section 20. Rules.
(a) The Department shall, no later than January 1, 2027,
publish proposed rules to implement this Act.
(b) The Department 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.
(c) Rules adopted pursuant to this Act shall not exceed
the minimum requirements necessary to ensure patient safety
and quality care and shall avoid imposing undue administrative
burden.
Section 25. Standard services. A community-based
palliative care provider shall make available the following
services to adult patients pursuant to rules adopted by the
Department:
(1) Comprehensive, interdisciplinary palliative care
assessments and individualized plans for care.
(2) Advance care planning, including goals of care
discussions and assistance with the completion of advance
directive documents and Physicians Orders for Life
Sustaining Treatment (POLST), if requested by the patient.
(3) Assessments and management of pain and non-pain
symptoms.

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(4) Assessments and management of behavioral health
and psychosocial needs related to the serious illness.
(5) Care coordination.
(6) Education of patients and caregivers to address
the management of serious illness at home.
(7) Provision of or access to social services,
community resources, and caregiver support.
(8) Provision of or access to spiritual care.
Section 30. Covered services; disclosures; prohibition;
preemption.
(a) Upon the adoption of rules implementing this Act:
(1) Any and all community-based palliative care
services for adults shall comply with the standards in
Section 25, except as provided in subsection (b).
(2) Materials describing the philosophy of the
services, specific services offered, and members of the
interdisciplinary team shall be provided to the patient or
the patient's agent during the first contact with the
patient, or earlier upon request.
(3) Advertising or verbally offering to provide
community-based palliative care services for adults that
are not in compliance with this Act is prohibited.
(b) If any provision of this Act conflicts with the
provisions of the Assisted Living and Shared Housing Act, the
Life Care Facilities Act, the Nursing Home Care Act, the

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Specialized Mental Health Rehabilitation Act of 2013, the Home
Health, Home Services, and Home Nursing Agency Licensing Act,
or the Hospice Program Licensing Act, then the provisions of
the Assisted Living and Shared Housing Act, the Life Care
Facilities Act, the Nursing Home Care Act, the Specialized
Mental Health Rehabilitation Act of 2013, the Home Health,
Home Services, and Home Nursing Agency Licensing Act, and the
Hospice Program Licensing Act shall control.
Section 35. Provider entity standards.
(a) All providers on the interdisciplinary team shall have
appropriate levels of education and licensure where required.
(b) Adult patients receiving community-based palliative
care services shall receive care from an interdisciplinary
team of providers that shall include: (i) a physician licensed
to practice medicine in all its branches or an advanced
practice provider and (ii) a social worker who may be a
licensed social worker or licensed clinical social worker.
(1) At least one member of the interdisciplinary team
shall be employed, full-time or part-time, by the provider
entity. Other members may be contracted by the provider
entity.
(2) All members of the interdisciplinary team must
meet professional education, experience, and training
criteria the Department shall establish by rule.
(c) Optional interdisciplinary providers may include a

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registered nurse, pharmacist, spiritual counselor, mental
health counselor or family therapist, occupational or physical
therapist or speech therapist, expressive therapist, home care
assistant, or nutritionist.
Section 40. Penalties.
(a) Any entity licensed, certified, or regulated by the
State that knowingly holds itself out as a provider of
community-based palliative care services for adults and fails
to comply with this Act is deemed to have violated the statute
or statutes governing the licensure, certification, or
regulation of the entity and any contract or agreement the
entity has with the State.
(b) Any entity not operated by the federal government or
any agency thereof or individual not covered by subsection (a)
that knowingly holds himself, herself, or itself out as a
provider of community-based palliative care services for
adults and fails to comply with this Act is guilty of a
business offense punishable by a fine of at least $1,001.
Section 45. Palliative care work group; assessment.
(a) Twenty-four months after the adoption of rules
implementing this Act, the Department shall convene a work
group made up of experts in serious illness and palliative
care, providers, families and caregivers, and other interested
parties to assess the understanding of and compliance with

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this Act and its rules.
(b) The assessment shall focus on barriers to
implementation, access disparities, and the impact of
regulations on provider participation. The Department may
collect anonymized data on community-based palliative care
services including patient demographics, services utilized,
provider disciplines involved, and patient outcomes.
(c) The work group shall provide the Director and General
Assembly with recommendations related to this Act and the
rules implementing this Act. Once the recommendations are
submitted, the work group shall be disbanded.
Section 50. Billing and reimbursement. Nothing in this Act
shall limit a health care provider's ability to bill or
receive reimbursement for palliative care services under
Medicaid, Medicare, or commercial insurance.
Section 55. Palliative Care Public Awareness and Education
Program.
(a) Subject to appropriation, the Department shall
establish a Palliative Care Awareness and Education Program.
(b) The purpose of the Program is to promote public
awareness of palliative care and the resources available.
(c) The Program shall include the following:
(1) Development of a public education and outreach
campaign to promote palliative care awareness and

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education, including, but not limited to, the following
subjects:
(A) criteria for qualifying patients;
(B) criteria for serious illnesses;
(C) the various palliative care services offered;
and
(D) availability of palliative care services in
the community.
(2) Development of educational materials to be made
available to consumers through local physicians,
hospitals, clinics, nursing homes, and boards of health.
(3) Development of professional education programs for
health care professionals to assist them in understanding
the role of palliative care and the availability of
palliative care services in the community.
(4) Development and maintenance of a list of current
providers of palliative care services in the State.