“Most people with a serious illness wish to spend as much time as possible in a non-hospital setting, among loved ones, free from pain and other distressing symptoms. To help achieve this vision for our state, the Texas Legislature established the Texas Palliative Care Interdisciplinary Advisory Council and the Palliative Care Information and Education Program in 2015 (House Bill 1874, 84th Texas Legislature, Regular Session).”
– Jimmy Blanton, Director, Office of Value-Based Initiatives, Quality, and Program Improvement, Texas Health and Human Services Commission
Palliative care can improve quality of life for people living with serious illnesses and their families. However, there is evidence that many of those who would benefit from the service are not accessing it. Much of this disconnect likely stems from a lack of awareness among patients and providers about palliative care, who could benefit from it, and how to access it. To address this issue, states have worked to spread knowledge among the public and patients with serious illnesses and their providers. These states seek to both increase general knowledge of the service and establish pathways that ensure that those most likely to benefit from the service learn about it at the time they need it.
Palliative Care: A State Resource Guide
Texas: Helping Patients, Caregivers, and the Public Understand Palliative Care
Texas has taken several steps to raise awareness of palliative care among the public, providers, and patients. In 2015, Texas enacted legislation that established the Palliative Care Interdisciplinary Advisory Council (PCIAC) and charged it with promoting professional and public education about supportive palliative care (SPC). This legislation also mandated the PCIAC to develop policy recommendations in the form of biennial legislative reports to improve education and awareness across the state. One of the first notable accomplishments of this council included developing and launching the Texas Health and Human Services system supportive palliative care and hospice care websites, which include resources for patients, families, and professionals. Texas has also taken steps to define palliative care as “supportive palliative care” through the passage of SB 916 of the 86th Texas Legislature, which adopted statutory language for supportive palliative care. Since 2017, the PCIAC has also aided Texas in developing and providing free annual continuing education events on supportive palliative care topics to health care professionals and the public. More recently, in May 2023, the Texas Legislature passed SB 739, which designated October 10 of each year as Supportive Palliative Care Awareness Day to “raise awareness about supportive palliative care optimizing the quality of life for seriously ill patients and their families.”
New Jersey: Facilities Connect Patients to Services
New Jersey leveraged legislation to ensure that those patients that could benefit from palliative care would learn about the service. In 2019, New Jersey enacted legislation requiring hospitals, nursing homes, and rehabilitation and other facilities to provide information about palliative care to patients with a serious illness or their families. Facilities not in compliance with the law may be required by the commissioner of health to develop an action plan to meet the requirements. New Jersey’s legislation complemented this requirement with training requirements to ensure that the administrative and medical staff of these facilities had the knowledge needed to provide accurate information. Specifically, licensed facilities must ensure that these staff complete annual training on advanced care planning, end-of-life care, and use of advance directives.
Florida and Oregon: Connecting Patients to Services via Primary Care Providers
Florida and Oregon both sought to establish primary care physicians as a source of palliative care information for their patients. Florida enacted legislation that requires primary care physicians (or their designees) to provide information about palliative care to patients when discussing the patient’s “diagnosis, planned course of treatment, alternatives, risks, or prognosis for his or her illness.” Further, physicians must comply with requests for pain management or palliative care from patients. Oregon leveraged its Patient-Centered Primary Care Home Program (PCPCH). In the program, clinics that meet specific standards are recognized as PCPCH clinics and receive payment incentives for serving public employees and/or Medicaid beneficiaries. Oregon’s 2020 recognition standards included the following as one of 11 must-pass criteria for earning recognition: “PCPCH demonstrates a process to offer or coordinate hospice and palliative care and counseling for patients, families, or caregivers who may benefit from these services.”
Arizona: Connecting Patients to Services via Their Case Manager
Arizona’s Medicaid program requires the managed care organizations (MCOs) participating in the Arizona Long Term Care System (ALTCS) to provide case management services to all members. (ALTCS serves only Medicaid beneficiaries who meet the criteria for receiving nursing home care.) Arizona Medicaid further specifies that, as part of their needs assessment and care planning responsibilities, case managers are to educate members (and those who help them make decisions) about end-of-life care and help members access them. End-of-life care is further defined to be a “concept of care, for the duration of the member’s life, that focuses on Advance Care Planning, the relief of stress, pain, or life limiting effects of illness to improve quality of life for a member at any age who is currently or is expected to experience declining health, or is diagnosed with a chronic, complex or terminal illness.”
Resources for Connecting Patients to Palliative Care
States with Palliative Care Information Programs (Interactive Map, NASHP, updated June 2023)
Palliative Care Advisory Task Forces (Interactive Map, NASHP, updated March 2023)
Educating the Public about Palliative Care (Explainer, NASHP, February 2022)
2022 Colorado Palliative Care Guide (Guide, September 2022, Colorado Department of Public Health and Environment)
State Strategies to Promote Advance Care Planning in Light of the Pandemic (Blog Post, NASHP, April 2021)
How States Can Frame the Message and Gather Support (Blog Post, NASHP, September 2020)
What State Policymakers Need to Know About Palliative Care (Infographic, NASHP, June 2020)
CAPC Factsheet: Palliative Care Across Settings (Brief, Center to Advance Palliative Care and NASHP, June 2020)
Comparison of Supportive Palliative Care vs. Hospice Care (Infographic, Texas Health and Human Services, undated)
Palliative Care State Policy: For State Policymakers (Toolkit subsection, Center to Advance Palliative Care, 2020; includes resources on advancing palliative care access)
Promising Practices Referral Processes (Compilation from the California Health Care Foundation, June 2019)
