Stroke survivors and their family members could benefit from palliative care, which focuses on easing pain and other symptoms once they leave the hospital, but the approach is widely underutilized, especially among Black, Hispanic and Asian patients, according to a new science report from the American Heart Association.
The scientific statement, published Monday in the AHA journal Stroke, encourages integrating palliative care into all stages of post-stroke care, including strategies for psychosocial health, how to navigate complex health care systems and how to prepare for end-of-life care when necessary.
"Stroke is often thought of as an event that is over quickly, but that is not true," Dr. Claire J. Creutzfeldt, who led the statement writing group, said in a news release.
Creutzfeldt is an associate professor of neurology at the University of Washington in Seattle. "Even though the majority of strokes are not immediately life-threatening, every stroke is life-altering, and every stroke requires high-quality, person-centered care. Integrating palliative care principles into stroke care is fundamental for all patients and at every stage after a stroke."
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Every year, nearly 800,000 people in the U.S. have a stroke, which occurs when a blood vessel to the brain ruptures or becomes blocked by a clot, interrupting blood flow and causing brain cells to die.
Stroke is a leading cause of disability and the fifth-leading cause of death in the U.S., contributing to the deaths of about 160,000 people each year.
Advances in treatment have allowed stroke survivors to live longer, but they often face long-term challenges, such as cognitive and physical disabilities along with psychosocial problems. The added responsibility of providing care to stroke survivors can be overwhelming for family members.
The new statement said palliative care efforts should include strategies to improve communication about prognosis and care goals, navigate complex health systems, address psychosocial needs such as coping with loss, and prepare for death with end-of-life care when necessary.
The statement also highlights the need to reduce sociodemographic and regional care disparities.
The statement suggests a holistic approach to palliative care that goes beyond physical symptoms and pain to include emotional, psychosocial, spiritual and existential distress and takes the family's expectations, values and goals into consideration.
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It highlights the importance of emotional, spiritual and psychosocial support in high-quality stroke care for survivors and their care partners. It also outlines the phases that follow a severe stroke, provides a palliative care checklist and screening tools to recognize and manage patient and family needs.
"It's essential to recognize the impact of illness and disability on someone's quality of life and understand that treatment decisions will vary from patient to patient based on their values, their beliefs and their culture," Creutzfeldt said. "An individualized and culturally sensitive approach to assessment and management is always best."
The care needs of survivors and their families or partners, she added, can change over time depending on events, symptoms, changes in function and the stage of the illness.
There is limited research on palliative care for stroke survivors and wide variation in the type of care they receive, the statement notes. Important symptoms, such as pain, may be undertreated. For example, post-stroke pain may be greatest four to six months and two years following a stroke, but it is often underdiagnosed.
Research shows up to 45% of stroke survivors leave the hospital with no plan for additional services, such as home health care or hospice services, and referrals for palliative care often don't occur until the end of life.
Black and Hispanic people, who face disproportionately higher stroke rates and poorer outcomes, are less likely to receive acute treatments such as intravenous therapy or surgery to treat blood clots, the statement said. And they are substantially less likely than white people to have "do not resuscitate" orders or advance directives in place. Black, Hispanic and Asian stroke patients also are less likely to be discharged to hospice care than white patients.
The statement noted that while some disparities may be attributed to cultural differences, other factors, such as the hospital where the patient was treated, have been associated with the likelihood of receiving palliative care, suggesting system-level inequities may play a role.
A 2023 AHA scientific statement on ways to address racial and ethnic disparities in stroke treatment highlights the need to better understand how clinicians, hospitals, systems and others influence these care patterns and explores ways to correct them.