New statement highlights role of palliative care in stroke recovery

American Heart AssociationDec 16 2024

Palliative care, an approach to care that helps people manage pain and other symptoms during all stages of a serious illness (not just at end of life), can help improve quality of life for stroke survivors as well as their family members, according to "Palliative and End-of-Life Care in Stroke," a new scientific statement published today in the Association's peer-reviewed scientific journal Stroke.

Stroke is often thought of as an event that is over quickly, but that is not true. 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."

Claire J. Creutzfeldt, M.D., chair of the writing group and associate professor of neurology at the University of Washington, Seattle

A stroke occurs when a blood vessel to the brain is either blocked by a clot or ruptures, interrupting blood flow and causing brain cells to die. A stroke can be disabling and often deadly. According to the Association's 2024 Heart Disease and Stroke Statistics, around 800,000 people in the U.S. have a stroke every year, and about 160,000 people die as a result, making stroke the 5^th leading cause of death in the country. It is also a leading cause of adult disability in the U.S.

Advances in stroke treatment have led to an increasing number of stroke survivors who often experience long-term challenges ranging from cognitive and physical disabilities to psychosocial and existential suffering in the weeks, months or years following a stroke. Stroke recovery can also be challenging for family members and caregivers of stroke survivors, who may feel overwhelmed by caregiving responsibilities.

The new statement complements the Association's 2014 Scientific Statement on Palliative and End-of-Life Care in Stroke, which covered core palliative care competencies and skills for health care professionals who treat stroke patients. Over the past decade, there has been growth in a variety of areas related to stroke and palliative care, and the new statement emphasizes the need to integrate palliative care principles into all stages of stroke care.

The statement includes strategies to improve communication about prognosis and goals-of-care, address psychosocial needs such as coping with loss, navigate complex health care systems and prepare for death with end-of-life care when necessary. It also highlights the substantial inequities that exist in palliative care after stroke across sociodemographic and regional characteristics and the need to reduce those disparities.

Palliative care needs and holistic assessment 

Patient- and family-centered palliative care requires a comprehensive assessment of symptoms and needs that go beyond physical pain to include emotional, psychosocial, spiritual and existential distress. A multidimensional assessment includes a proactive and holistic evaluation of the impact of the stroke on the patient and their family, their expectations after the stroke, their values and their goals of care.

"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," said Creutzfeldt. "An individualized and culturally sensitive approach to assessment and management is always best. Additionally, the palliative care needs of patients and their families or care partners after a stroke fluctuate over the course of their illness based on events, symptoms, changes in function and stage of the illness."

Emotional support, spiritual support and psychosocial support are all important parts of high-quality stroke care for patients and care partners, and the writing group highlights the success of interventions that consider both the patient and their care partners. The statement also outlines phases after severe stroke, examples of a palliative care needs checklist and screening tools to help recognize and manage patient and family needs.

Post-acute care

There is limited research on palliative care for patients and family after a stroke survivor's discharge from the hospital, known as the post-acute care phase. There is a wide variation in the type of care patients who have experienced stroke are referred to after leaving a hospital. Post-stroke pain is greatest at four-to-six months and also at over two years after a stroke, yet continues to be underdiagnosed and therefore undertreated.

Two recent studies in the U.S. that included both ischemic and hemorrhagic stroke cases reported that approximately 34-45% of patients were discharged home without additional services, such as home health care and home hospice services; 10-11% were discharged home with home care/home health services; and 30-42% were discharged to inpatient post-acute care facilities. Regardless of discharge destination, referrals to palliative care are low, with a recent review article of palliative care after stroke showing that stroke makes up between 0.4%-8.9% of referrals to specialist palliative care services, with most referrals being made only near the end of life.

End-of-life care after stroke

Although palliative care is available during any stage of serious illness, hospice care, also known as end-of-life care, is a specific type of palliative care that can be considered when a patient's prognosis is six months or less. Most patients who die after a stroke do so in the hospital or in a nursing facility; however, the percentage of people who have experienced stroke who die at home is increasing.

Since the most common symptoms after stroke at the end of life include pain and dyspnea, or shortness of breath, it is important for health care professionals to focus on managing these symptoms and counseling families on what to anticipate. Patients and their family members benefit from receiving intensive comfort measures and emotional support. 

Despite significant illness burden after severe stroke, many patients do not qualify for hospice care given the focus on life expectancy. Palliative care can help relieve pain, increase comfort and enhance quality of life for stroke survivors with life expectancy greater than six months.

Racial/ethnic care inequities after a stroke

Disparities in stroke incidence, outcomes and acute treatment exist, with Black and Hispanic populations generally shown to have a higher stroke incidence, worse functional outcomes and less frequent use of acute treatments, such as intravenous therapy or surgical procedures to treat blood clots. Inequities have also been seen in advance care planning and patterns of serious illness treatment after stroke.

Studies show Black and Hispanic patients are less likely than white patients to have "do not resuscitate" orders and advance directives in place, with one study demonstrating that Black people had 77% lower odds and Hispanic people had 70% lower odds of completing an advance directive compared to white people. Research also found that Black, Hispanic and Asian patients were discharged to hospice care less frequently than white patients.

The writing group noted that while some of these differences may be attributable to cultural differences, the continuing impact of historical health inequities in the U.S. should not be ignored. Data shows that a significant indicator of palliative care utilization is the hospital where the patient received care, suggesting system-level inequities are partially responsible.

Systematic, tailored care strategies may help to mitigate these historical inequities, some of which are outlined in the Association's 2023 scientific statement, Strategies to Reduce Racial and Ethnic Inequities in Stroke Preparedness, Care, Recovery, and Risk Factor Control. Additional work is also needed to better understand the role clinicians, hospitals, systems and upstream factors play in these long-observed differences in care patterns.