In addition to promoting palliative care through education and public outreach, states can support access to and provision of palliative care through regulation, licensing, quality measurement initiatives, and support of services such as telehealth. States have multiple opportunities to build on existing infrastructures and initiatives to support the provision of palliative care services.
State legislators, regulators and licensors can all shape how palliative care services are delivered in hospitals, nursing facilities, and outpatient and in-home settings.
- State licensing and other regulations can define the types of palliative care services delivered, staff composition, training requirements, and other core features.
- States also oversee professional boards that determine minimum educational standards, continuing professional education requirements, and scope of practice.
Together, with other state strategies such as quality measurement and support for telehealth, these efforts can improve patient and provider understanding of palliative care, and encourage the delivery of high-quality services.
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Define Palliative Care Services
One of the first steps leaders can take to promote access to palliative care is to make sure there is a clear definition of palliative care services. Defining palliative care services and standards can clarify the scope and purpose of palliative care and promote access to quality care across diverse settings. The resources below can be tapped by states interested in defining palliative care within their state’s health care system.
Include key features of the service: The National Consensus Project’s Clinical Practice Guidelines for Quality Palliative Care (4th edition), developed with input from experts and stakeholders, define palliative care as “an interdisciplinary care delivery system designed to anticipate, prevent, and manage physical, psychological, social, and spiritual suffering to optimize quality of life for patients, their families and caregivers. Palliative care can be delivered in any care setting through the collaboration of many types of care providers.” The guidelines emphasize core features of palliative care:
- Appropriate at any stage in a serious illness, and it is beneficial when provided along with treatments of curative or life-prolonging intent.
- Provided over time to patients based on their needs and not their prognosis.
- Offered in all care settings and by various organizations, such as physician practices, health systems, cancer centers, dialysis units, home health agencies, hospices, and long-term care providers.
- Focused on what is most important to the patient, family, and caregiver(s), assessing their goals and preferences and determining how best to achieve them.
- Interdisciplinary to attend to the holistic care needs of the patient and their identified family and caregivers.
California statute SB 1004 (Chapter 574, Statutes of 2014) require its Department of Health Care Services (DHCS) to establish standards for palliative care and provide technical assistance to managed care organizations contracting with the state Medicaid program, Medi-Cal.
California offered additional guidance in a 2018 All-Plan Letter from the Department of Health Care Services to Medi-Cal managed care plans. California required the following services in a minimum palliative care benefit, with further guidance for each service:
- Advance care planning
- Palliative care assessment and consultation
- Development of a plan of care
- A palliative care team
- Care coordination
- Pain and symptom management
- Counseling and social services
Distinguish Palliative Care from Hospice
Palliative care focuses on improving the quality of life for patients with serious illness, and can be offered at any point in care, alongside curative treatment. Hospice, a subset of palliative care, provides comfort care to patients with a terminal illness and their families, and is provided in the later stages of a disease, typically during the final 6 to 12 months. In many states, palliative care is defined exclusively within hospice regulation, which may reduce public understanding and access to these services. Texas highlighted the differences between the two services on their website on palliative care.
How Texas Defines Palliative Care and Hospice Services
| Palliative Care | Hospice |
Texas: “Supportive palliative care (SPC) is patient and family-centered health care that optimizes quality of life for seriously ill patients (high-risk of mortality or life-limiting illness) and their families by:
SPC is provided without regard to patient age or terminal prognosis and does not require the patient to decline attempts at cure or other disease-modifying therapy.” | Texas: “Hospice consists of a medically directed, interdisciplinary team-managed program of services that focuses on the patient and their family. Hospice is the gold standard method of caring for people at the stage of a terminal illness when no further curative or life-prolonging therapy is available or wished to be pursued by a patient or family member. Hospice services can assist the family (as well as family caregivers) in making the patient as comfortable as possible by optimizing pain and symptom management and other forms of physical and/or spiritual suffering as needed in a home or home-like setting.” |
Texas also developed this Comparison of Supportive Palliative Care vs. Hospice Care infographic to further distinguish between palliative care and hospice services.
Promote Access to Palliative Care across the Health Care Continuum
Palliative care can be delivered in different settings across the continuum of care, including inpatient settings, outpatient practices, clinics, and residential care facilities. States can use licensing and other policy approaches to support delivery of quality palliative care services in diverse settings:
Hospitals: In hospitals, palliative care may be delivered through a palliative care team that is available to consult with the treating team. Some larger hospitals may have palliative care units, where a palliative care team serves as the primary treating team. Maryland requires acute general hospitals and specialty chronic care hospitals with a minimum of 50 beds to provide a facility-wide palliative care program that provides consultation services. The regulation:
- Specifies that covered hospitals must promote palliative care and provide information to patients;
- Outlines staffing for palliative care programs, including designation of an interdisciplinary team and training to other hospital staff;
- Describes the palliative care services that must be offered; and
- Notes that staff, family, and patients shall have access to an ethics committee, among other requirements.
Long-term care facilities: Palliative care in long-term care facilities can be delivered through a team of social workers, medical and nursing staff, chaplains, and other professionals who provide visits and services. Organizations may contract with community-based palliative care teams to provide services.
States can develop regulations that shape what this care looks like in long-term care facilities. The following guidelines are from Colorado. While the state does not mandate that palliative care be offered, it has set standards for those facilities that choose to provide it.
Colorado’s palliative care standards (3.3.1) establish that “if palliative care is provided within a licensed health care entity, the licensee shall have written policies and procedures for the comprehensive delivery of these services. For each patient receiving palliative care, there shall be documentation in the plan of care defining evaluation of the patient and what services will be provided. The licensee’s policies and procedures shall address the following elements of palliative care and how they will be provided and documented:
(1) Assessment and management of the patient’s pain and other distressing symptoms;
(2) Goals of care and advance care planning;
(3) Provision of, or access to, services to meet the psychosocial and spiritual needs of the patient and family;
(4) Provision of, or access to, a support system to help the family cope during the patient’s illness, and
(5) As indicated, the need for bereavement support for families by providing resources or referral.”
Recent legislation in New Jersey establishes that licensed assisted living faculties, dementia care homes, nursing homes, assisted living residences, comprehensive personal care homes, residential health care facilities, hospitals, and long-term care facilities are required to have all administrative and professional medical staff complete annual training on advanced care planning, end-of-life care, and use of advance directives and Provider Orders for Life-Sustaining Treatment (POLST) forms.
Primary Care: Patient-centered medical homes (PCMH), an area of significant state investment, are enhanced primary care practices that offer team-based, coordinated care, often with integrated behavioral health capacity. PCMH practices may present opportunities for states to promote access to palliative care using existing team-based infrastructure. New York State used its Delivery System Reform Incentive Payment (DSRIP) to encourage palliative care access within PCMHs. As one of several health care transformation projects, performing provider systems (PPS) – local systems of care – were provided payment incentives to support PCMH practices to deliver palliative care. PPS that selected this project were required to achieve the following:
- “Identify appropriate primary care practices, preferably already using the PCMH model, who are willing to integrate Palliative Care into their practice model. If practices are not in the PCMH model, they will be expected to achieve at least Level 1 of the 2014 standards or most current PCMH Recognition Program standards within the first two years of the project. Provider systems may consider this as a service in a Medical Village in association with the primary care practice.
- Develop partnerships with community and provider resources including Hospice to bring the palliative care supports and services into the practice.
- Develop/adopt clinical guidelines agreed to by all partners including services and eligibility. This should include implementation, where appropriate, of the IPOS Staff, IPOS Patient, or IPOS Dem surveys. Engage staff in trainings to increase role–appropriate competence in palliative care skills.
- Engage with Medicaid Managed Care to address coverage of services.
- Develop a quality committee to monitor and address quality.”
Build Capacity to Provide Palliative Care
Provider discomfort, lack of knowledge, and limits on scope of practice can act as barriers to accessing palliative care. Through working with professional associations and other stakeholders, states can identify effective strategies to promote professional capacity in palliative care and increase access.
Utilize continuing education requirements: States can leverage continuing medical education (CME) requirements to build provider capacity in palliative care. States can pass legislation that mandates palliative care-related educational requirements for providers, or specify these requirements within medical board licensing and CME requirements. Currently four states explicitly mention “palliative care” or “palliative medicine” within the context of CME requirements: Georgia, New York, Rhode Island, and Vermont. Here are additional details about these states’ approaches:
| State | Palliative care-related CME information |
| Georgia | Georgia has legislation that requires physicians working in pain management clinics to have 20 hours of CME related to pain management or palliative medicine over two years, or be board-certified in pain management or palliative medicine. Documentation must be submitted every two years. The Georgia Composite Medical Board requires physicians who prescribe Schedule II or III controlled substances for chronic pain for more than 50 percent of their annual patient population to fulfil this requirement. |
| New York | New York State, within the context of controlled substances, passed legislation that requires licensed prescribers who have a DEA registration number to prescribe controlled substances to complete three hours of coursework on pain management, palliative care, and addiction, within a year of registration and then at least once every three years. As of 2020, three hours of coursework is hosted online through the University of Buffalo and sponsored by the New York State Department of Health. |
| Rhode Island | Rhode Island’s Board of Medical Licensure and Discipline requires physicians to complete at least four hours of CME on topics as determined by the director of the Rhode Island Department of Health. Current topics include opioid pain/chronic pain management and end of life/palliative care. |
| Vermont | Vermont’s Board of Medical Practice requires physicians completing CME requirements to complete at least one hour of continuing medical education on hospice, palliative care, or pain management services. Physicians must also take at least two hours on prescribing controlled substances. |
Provide training to providers: As part of its Medi-Cal palliative care initiative, California supported online palliative care training courses for qualified Medi-Cal providers through a contract with the California State University (CSU) Shiley Institute for Palliative Care.
Leverage telehealth: The current COVID-19 pandemic has highlighted the critical importance of telehealth in providing continuity of care to people with serious illness. Palliative services such as care coordination, social and psychological support, and advance planning are now being delivered through telehealth, allowing for the provision of palliative care services notwithstanding social distancing and access limitations in hard-hit hospitals. Key palliative care services can now be offered via telehealth, facilitated by increasing state and federal flexibilities:
- Pain and symptom management. Recent Drug Enforcement Agency guidance allows for qualified practitioners to be able to, during the declared public health emergency, prescribe controlled substances for medical purposes using specified audiovisual communication systems without having conducted an in-person evaluation, under specific circumstances and while complying with federal and state laws.
- Medicaid-related flexibilities that allow for remote provision of care. Within Medicaid, states can seek flexibility during emergencies using Section 1135 emergency waivers and Medicaid 1915 (c) Appendix K waivers, along with the ability to make modifications to state 1115 demonstration waivers, 1915(c) home and community-based services waivers, and Medicaid state plan amendments. The Centers for Medicare & Medicaid Services provides a 1135 waiver checklist to assist states; within the checklist, flexibilities that could support remote palliative care services include:
- Suspension of Medicaid fee-for-service prior authorization requirements
- Requiring fee-for-service providers to extend pre-existing authorizations through which a beneficiary has previously received prior authorization, through the termination of the emergency declaration
- Permitting providers located out-of-state or territory to provide care to an emergency state’s Medicaid enrollee and be reimbursed for that service.
- New York’s 1135 request included waiving prior authorization and medical necessity processes within fee-for-service programs and flexibilities on provision of care from out-of-state providers. New York State Department of Health released an FAQ document with guidance noting reimbursement for telephonic services to members where appropriate, supporting a policy that all Medicaid provider types are eligible for using forms of telehealth to provide services within their scope of practice when appropriate and possible during the emergency.
- Colorado, during the COVID-19 emergency, has temporarily added home health and hospice providers as eligible telehealth providers in their Medicaid program, with specifications about the type of telehealth that can be provided. Other updates regarding requirements, specific provisions and telehealth billing and reimbursement policy are hosted at Colorado.gov.
Review the state’s scope of practice regulations: California amended its hospice licensing statute to permit hospice providers to deliver palliative care to patients without a diagnosis of a terminal illness until Jan. 1, 2022 via a pilot program. Ohio’s HB 286 allows for the short-term provision of medically necessary palliative care services to non-hospice patients by hospice programs, in addition to requiring specified health care facilities and providers to develop a system to identify patients who could benefit from palliative care and provide them with information.
Identify quality measures and reporting strategies: States can monitor access to and quality of palliative care by requiring providers, accountable care organizations, and/or managed care plans to report on related metrics, or by including palliative care delivery in performance improvement projects. States may want to start by monitoring process metrics that correspond to specific palliative care services. States can consider information from existing national palliative care quality resources as a starting point. The National Quality Forum, the Center to Advance Palliative Care’s Serious Illness Strategies framework, and the Convening on Quality Measures for Serious Illness Care have developed robust resources that can help states define evidence-based standards of care and quality metrics.
Palliative care-related measures in long-term services and supports contracts. Colorado, Illinois, New York and Rhode Island included at least one palliative care-related quality metric, such as pain management or advance care planning, in their financial alignment demonstration or managed long-term services and supports (MLTSS) contracts. Performance on these metrics is often linked to financial incentives for managed care plans. Colorado, Illinois, and Rhode Island included the Healthcare Effectiveness Data and Information Set (HEDIS) Care for Older Adults measure, which measures the percentage of beneficiaries 66 years and older who had the following four services in one measurement year:
- Advance care planning
- Medication review
- Functional status assessment
- Pain assessment
Palliative care-related measures within state quality improvement initiatives. New York State and Texas’s DSRIP programs incorporated palliative care metrics. New York’s program recently expired, but demonstrated improvement from Year 3 to Year 4 for the majority of palliative care quality measures on average. Texas’ program is in operation through 2022. Both states’ programs focused on transforming hospital care.
| Texas | New York |
| Texas’ DSRIP program incentivizes hospitals and other providers to improve access to care and how care is delivered, targeting Medicaid enrollees and low-income uninsured individuals. Palliative care measures include:
| New York’s DSRIP program is designed to further integrate palliative care into patient-centered medical home practices and nursing home settings. The project used Integrated Palliative Care Outcome Scale (IPOS), a standardized screening tool to identify which patients are most in need of palliative care interventions. They measured access to palliative care services for patients most in need, not the outcomes associated with palliative care interventions. Quality measures included:
|
Additional Resources
- NASHP quality measures webinar recording: In October 2019, NASHP hosted a webinar on quality measures, Utilizing Quality Measures to Build an Effective Palliative Care System, with information from New York State and the National Committee for Quality Assurance (NCQA).
- Example of guidelines: The National Consensus Project for Quality Palliative Care Clinical Practice Guidelines for Quality Palliative Care (4th edition)
- Example of guidance: California’s 2018 All-Plan Letter contains guidance and requirements about palliative care provision to Medi-Cal managed health plans.
- Accreditation: A range of settings can be certified in palliative care by the Joint Commission. Community Health Accreditation Partners (CHAP) also offers accreditation. States could consider working with publicly funded universities to develop accreditation programs for providers.
- Person-centered considerations: The Administration for Community Living (ACL) compiled a set of Person-Centered Principles for the Seriously Ill.
- Training: The Centers to Advance Palliative Care (CAPC) created a document, The Case for Improving Communication and Symptom Management Skills, to support the idea that clinicians should be trained in communication and symptom management skills.
Jimmy Blanton
Director, Office of Value-Based Initiatives, Quality and Program Improvement
Texas Health and Human Service Commission
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).
With this act, Texas joined a growing number of states charged to develop policies and programs that promote greater awareness and availability of specialized, multi-disciplinary palliative care services for people and families at any stage of a life-threatening illness, not just at the end of life. Our best evidence demonstrates that palliative care is most effective when started early during a serious illness as part of an individual’s overall treatment plan. Palliative care can improve quality of life, reduce patient and caregiver burden, and lower medical costs.
During these past six years, Texas has been honored to collaborate with many stakeholders to improve access to early palliative care, now referred to in Texas as Supportive Palliative Care (SPC). Since passage of HB 1874, Texas has adopted a definition for SPC in statute and commissioned a comprehensive study on the potential benefits of SPC coverage in the state’s Medicaid program. The state has also launched online resources to support families and professionals and awards hundreds of hours of professional continuing education credits each year to interdisciplinary providers. Through it all, Texas has gained from work by the National Academy for State Health Policy to connect leaders in the field from across the nation to help states identify policy approaches for improving serious illness care through earlier availability of palliative care. Texas remains committed to these collaborative efforts to move towards a goal that all patients and families facing serious illness have the information and opportunity to choose care that fits their individual circumstances and values, and care that is of the highest possible quality.
