How States Can Frame the Message and Gather Support
Palliative care is good care for people with serious illness. It can help avoid unnecessary and unwanted treatment, and prevent needless hospitalizations and other costly interventions. In spite of the well-documented benefits of palliative care, lack of familiarity, discomfort, and stigma can inhibit providers from offering palliative care and can prevent families and patients from asking for services that can support their individual goals and quality of life.
To bridge that gap, states can use public health messaging and other policy tools to promote understanding and greater acceptance of palliative care services. The National Academy for State Health Policy has identified a range of strategies and best practices that state leaders can deploy to promote palliative care among policymakers, patients and families, providers, the public, and other stakeholders:
Share information with policymakers. State leaders have noted in discussions that state policymakers themselves may not be fully familiar with palliative care, how it differs from hospice, and why states may have an interest in promoting these services and supports.
The infographic What States Need to Know About Palliative Care can provide policymakers with fast facts about palliative care, including why it is important for states and how states can improve access to high-quality palliative care.
State policymakers can share this tool with fellow officials and other stakeholders. The infographic can also be accessed as a slide deck that can be incorporated into Powerpoint presentations for easy use and dissemination. A factsheet developed by the Center to Advance Palliative Care may also be helpful in conveying what palliative can look like across a range of settings.
Provide information to the public: As a result of either state statutes or regulations, 13 states (view an interactive map showing their highlights) require agencies, such as state departments of public health, aging, or community health, to develop and disseminate resources about palliative care. These agencies share palliative care information with the public, individuals living with serious illnesses and their families, and health care providers. Content often includes information detailing how to access palliative care services, links to providers and programs, and continuing education opportunities for providers. Visit the websites of Nebraska and Texas to view informative, well-organized examples of state palliative care websites.
States that choose to create websites to educate the public may consider incorporating some of the following components:
- A comprehensive definition of palliative care;
- A list of hyperlinked state palliative care providers and services;
- Resources for patients and families: Some state websites provide patients and families with information about what palliative care is, how it can benefit both patients and families, and where palliative care services are provided across the state. States can include resources for patients and families such as:
- A “Is palliative care right for me” questionnaire;
- A link to Get Palliative Care;
- The one-pager: Centers for Medicare & Medicaid Services Palliative Care vs. Hospice Care;
- A link to Palliative Doctors, created by the American Academy of Hospice and Palliative Care Medicine;
- A link to geriatrics and extended care information provided by the Veterans Association; and
- Patient stories and testimonials.
- Resources tailored to non-palliative providers. States with comprehensive palliative care websites offer providers information about what palliative care entails, how it can help, and when providers should refer their patients to a palliative care specialist. Some states include the following resources for providers:
- Links to palliative care webinars;
- Links to continuing education opportunities; and
- Links to professional membership associations.
- States with a palliative care council may also consider including information about the council, its purpose, its agendas and minutes, any reports developed by the council, and its members on the state’s palliative care website.
Leverage contracting and regulation to promote awareness. Several states have statutes that require provider outreach or education about palliative care to patients who may benefit from these services. A few states have embedded these requirements into their regulatory language that enables oversight. New Jersey recently passed legislation requiring that hospitals, nursing homes, and rehabilitation and other facilities 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 new requirements. In Wisconsin, the state’s Department of Health Services’ Division of Public Health contracts with Aging and Disability Resource Centers in the state to educate older adults and individuals with developmental or intellectual disabilities about palliative and hospice care.
Promote education about palliative care across a range of care settings. Massachusetts, New York, Oregon, and Rhode Island all require hospitals, nursing homes, and long-term care facilities to provide information to patients about palliative care. Oregon, for example, requires licensed health care facilities to have procedures in place to identify patients who could benefit from palliative care, provide education to patients, and facilitate referral to available services as needed. In Florida, health care providers – including primary care physicians and others – must share information and comply with requests for pain management or palliative care from patients.
Engage core partners. Over 25 states have taken legislative action to create a palliative care council or task force. Authorizing legislation across these states features common themes, such as composition of the overseeing body, frequency of meetings, and structural components. Councils and task forces, such as in Massachusetts, are often tasked with “the establishment, maintenance, operation, and evaluation of palliative care initiatives.” This may include conducting surveys to better understand the provision of palliative care services within a state (see Maine’s Palliative Care Survey), reporting on a state’s palliative care initiatives and capacity (see Tennessee’s 2019 Annual Report), or providing recommendations for the improvement of palliative care services (see Maryland’s Workgroup Recommendations). The composition and goals of these groups vary by state; for individual state task force information, view NASHP’s state palliative care task force interactive map.
Identify state champions and potential partners for this work. The Center to Advance Palliative Care (CAPC) publishes an annual report card that details available hospital-based palliative care programs in every state.