HB5476 104TH GENERAL ASSEMBLY

LRB104 17553 BAB 30981 b

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.

A BILL FOR

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 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 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 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.

(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 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 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 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 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.