In 2024, the American Medical Association updated its Code of Medical Ethics to establish that physicians have an ethical responsibility "to address the pain and suffering occasioned by illness and injury and to respect their patients as whole persons. These duties require physicians to assure the provision of effective palliative care whenever a patient is experiencing serious, chronic, complex or critical illness, regardless of prognosis."1
For the nation's largest and most influential physician association to take this step is an indication that in a few short decades, palliative care has evolved to be a critical component of quality care for people with serious illness and their caregivers. The question is no longer whether to deliver palliative care, but how to deliver high-quality palliative care to all patients who need it.
AN EVOLVING SPECIALTY
In the late 1990s, a pioneering group of health care leaders developed a new model of care for patients with serious illness: palliative care. These leaders recognized that while medicine had made great strides in treating diseases, far too often patients and families experienced suffering due to the physical, psychological, social or spiritual effects of serious illness.
Palliative care emerged as a team-based specialty focused on providing relief from the symptoms and stressors of serious illness, with the goal of improving quality of life and aligning care with a patient's goals and preferences. It is appropriate at any age and stage in a serious illness, and palliative care teams collaborate with a patient's other clinicians to provide an extra layer of support.
For patients, the benefits of palliative care include reduced symptom burden and improved quality of life. High-quality palliative care also produces value for health care organizations, including reductions in hospital admissions and readmissions, hospital length of stay and total costs of care.2
Based on the strong value proposition for palliative care, today approximately 84% of U.S. hospitals with more than 50 beds provide palliative care, and access to palliative care is increasing in community settings, including clinics, long-term care settings and patients' homes.3 Most states have developed formal structures for state-level palliative care advocacy, and a growing number of accountable care organizations and health insurance plans have contracted with palliative care programs to provide services for their members with serious illness.
AN IMPERATIVE FOR MORE EQUITABLE CARE
While examples of disparities exist in all facets of U.S. health care, for patients with serious illness, the stakes could not be higher. The evidence tells us that Black and Hispanic patients receive poorer-quality pain management and clinical communication than do white patients, which results in preventable suffering.4, 5 Social risk factors exacerbate the challenges of coping with a serious illness, including patients' financial capacity to access services and medications, families' availability to provide caregiving support to loved ones, and health literacy barriers to care plan adherence. These are the issues that interprofessional palliative care teams are expert at addressing.
While health care organizations cannot address all the root causes of social inequality alone, palliative care teams are well-positioned to identify and address the disproportionate suffering faced by minoritized populations when they are diagnosed with a serious illness. For Catholic health care organizations, which are committed to improving health and well-being for marginalized and vulnerable patients, palliative care is a core strategy to equitably ensure dignity in serious illness and at the end of life.
BARRIERS TO UNIVERSAL PALLIATIVE CARE
If palliative care is a win-win for patients and for health care organizations, why isn't it universally available?
Catholic health systems were among the early adopters in the movement toward standardized, high-quality access to palliative care for patients with serious illness. This should not be surprising, as both the driving philosophy behind palliative care and the services provided by palliative care teams are fundamentally aligned with the Ethical and Religious Directives for Catholic Health Care Services (ERDs), with a focus on dignity, whole-person care and informed decision-making. And yet, both inside of Catholic health and across U.S. health care more broadly, gaps remain in palliative care access and quality.
We can think about palliative care availability in three ways:
1) Is a specialty palliative care program operating in the setting where a patient receives care?
2) Does the program have capacity to see the patient?
3) Do the program's services meet quality standards for palliative care?
While most U.S. hospitals now offer palliative care, low staffing numbers can result in palliative care delivered only to those patients who are sickest or at the end of life — meaning that patients who would benefit from palliative care earlier in the disease course do not receive services.
For people living with a serious illness for months or years, access to palliative care in the home or community is essential — not just in moments of crisis when a patient is in the hospital. Community-based palliative care programs can ensure that patients' symptoms are well-managed to prevent crises, assess for spiritual and social needs over time, address family caregiver burdens, and work with patients to understand their goals of care as a disease progresses. However, while there is no comprehensive national directory of community-based programs, we know that in many communities patients are not able to access palliative care services.6
To understand why this is the case, we must first recognize that health care organizations are not required to provide palliative care — which means that palliative care access is contingent on the commitment of health care leaders. Program financing can also present challenges. While both fee-for-service billing and health plan contracting opportunities have improved for palliative care teams in recent years, leaders of community-based programs must ensure efficient and effective operations to directly cover the costs of their services.
For health care organizations to realize the benefits of specialty palliative care for their patients, programs must be adequately equipped to deliver quality care, both in terms of the makeup and size of the team.
As we see elsewhere in health care, financial pressures put care quality at risk in palliative care. High-quality palliative care requires an interprofessional team equipped to address not just a patient's physical symptoms, but also their spiritual, social and psychological needs. That means that chaplains, social workers and nurses are core members of the palliative care team, despite not being able to bill for their services. For health care organizations to realize the benefits of specialty palliative care for their patients, programs must be adequately equipped to deliver quality care, both in terms of the makeup and size of the team.
A ROAD MAP FOR PALLIATIVE CARE
Health care organizations across the country are innovating to ensure that palliative care reaches the patients and families who need it. Several strategies can help an organization to better address their patients' palliative care needs.
Primary Palliative Care Education
While patients whose needs are most complex should be seen by the specialty palliative care team, all caregivers have the opportunity to assess and address the palliative care needs of their patients with serious illness. That's why many organizations are integrating palliative care into their education initiatives, focusing on skills such as communicating with patients about care goals, prognosis and decision-making, managing pain and symptoms, and supporting the needs of family caregivers.
A plethora of primary palliative care education resources exist for clinicians from all professions, including those offered by the Center to Advance Palliative Care (CAPC), VitalTalk, the End-of-Life Nursing Education Consortium and others. Broad-based education enables treating teams to address patients' basic palliative care needs, ensuring that specialty palliative care resources are available for high-need patients.
Bridging Gaps Through Telehealth
For small or rural care organizations, fielding a specialty palliative care team may not be feasible — but telehealth can be employed to connect palliative care consultants with patients and treating clinicians. Whether to discuss care decisions, such as hospice with patients and families, or to advise on management of complex symptoms, telehealth partnerships can bring palliative care services when in-person care is not available. Telehealth can also help to extend the capacity of specialty palliative care teams working in community settings, providing virtual touchpoints with patients between in-person visits.
Standardization
To ensure that palliative care capacity is equitably and reliably applied to patients with complex needs, health care organizations can develop standard criteria for palliative care consults. Often called "triggers," these criteria comprise patient or disease factors that indicate to a treating clinician that their patient would benefit from palliative care. Standardized referral triggers can be integrated into electronic health records as automated alerts, which can help ensure that palliative care reaches the right patients, in the right place and at the right time.
A CALL TO ACTION
Patients living with serious illness — and their families — deserve person-centered care that reflects their values and priorities and provides the best possible quality of life. These goals are central to health care organizations and achievable through provision of high-quality palliative care. CAPC is proud to be a partner of CHA and to provide tools and technical assistance to help Catholic health care organizations advance their palliative care strategies.
BRYNN BOWMAN is CEO for the Center to Advance Palliative Care. She is also an assistant professor with Brookdale Department of Geriatrics and Palliative Medicine at Icahn School of Medicine at Mount Sinai.
NOTES
- "AMA Code of Medical Ethics," American Medical Association, https://code-medical-ethics.ama-assn.org/ethics-opinions/palliative-care.
- "America's Readiness to Meet the Needs of People with Serious Illness: 2024 Serious Illness Scorecard," Center to Advance Palliative Care, https://www.capc.org/serious-illness-scorecard/.
- "The Case for Hospital Palliative Care," Center to Advance Palliative Care, https://www.capc.org/documents/246/.
- "Health Care for Black Patients With Serious Illness: A Literature Review," Center to Advance Palliative Care, https://www.capc.org/health-care-for-black-patients-with-serious-illness-a-literature-review/.
- "The Health Care Experience of Hispanic Patients With Serious Illness: A Literature Review," Center to Advance Palliative Care, https://www.capc.org/health-care-experience-hispanic-patients-with-serious-illness-literature-review/.
- "America's Readiness to Meet the Needs of People with Serious Illness," Center to Advance Palliative Care.