The Role of Palliative Care in Stroke

Stroke is often seen as a crisis of the moment — an acute medical emergency where the first 24-48 hours are critical for survival. But for many patients, the challenges don’t end there. Navigating the aftermath of a stroke can be overwhelming, and palliative care may play a crucial role in supporting both patients and their families through difficult decisions and ongoing care needs.

A recent scientific statement from the American Heart Association (AHA) underscores the importance of palliative care in improving quality of life for stroke survivors and their loved ones.

The latest data from the AHA show that in the United States approximately 795,000 people have a stroke each year. The Global Burden of Disease study estimates that between 1990 and 2019, the absolute number of incident stroke cases grew by 70%.

AHA’s 2025 update on heart disease and stroke statistics predicts that by 2030, another 3.4 million adults will have a stroke in the United States, an increase of 20.5% from 2012.

Most people will survive a stroke but can face long-term challenges, including loss of independence, functional impairment, cognitive impairment, and dementia. These issues can be compounded on the basis of an individual’s comorbidities, lack of an adequate support system, or a change in their living situation and can be exacerbated through racial or ethnic healthcare inequities.

Not Just for End-of-Life Care

Over the past decade, the concept of using palliative care as a tool to help patients and their families manage some of the long-term effects of stroke has emerged. A common misconception about palliative care is that it’s only for end-of-life patients. In reality, it benefits patients at all stages of disease, including following a stroke.

“The fact that a stroke tends to stay with people for the rest of their lives and changes their lives and their quality of life and increases their overall morbidity and mortality is often overlooked,” Claire J. Creutzfeldt, MD, chair of the AHA’s Scientific Statement on Palliative Care in Stroke, said in an interview. “Stroke, and especially severe stroke, is a chronic condition.”

Palliative care following a stroke involves a multidisciplinary team communicating goals of care and quality of life for patients, their caregivers, and their families, and also includes aspects of end-of-life care if warranted.

In addition to misconceptions about what palliative care is and is not, there is also a reluctance in society to talk about death and dying, which is another barrier to exploring these topics, Seth Krevat, MD, senior medical director of the MedStar National Center for Human Factors in Healthcare and attending palliative care provider at MedStar Georgetown University Hospital, Washington, DC, said in an interview.

Krevat said that any hospital with a palliative care specialty can bring palliative care into post-acute stroke care, “but you don’t need to be a specialist to provide some form of palliative care focused on comfort and quality of life.”

Barriers to Implementation

The authors of the AHA statement explained that palliative care should be integrated into all stages of stroke care but noted that there are a number of barriers to implementation.

For instance, Creutzfeldt said there are likely only a handful of neurologists with dual-board certification in vascular neurology and palliative care. Still, palliative care is a skill a neurologist who encounters stroke in their practice should have in their toolkit.

“Most palliative care needs can, and should, be assessed and managed by the patient’s stroke neurologist with additional training in communication skills and palliative care,” she said.

Implementing palliative care following a stroke should be an ongoing conversation with patients and their families to ensure their needs are met, which involves a “holistic, all-person approach” that starts during hospitalization and continues in the following months and years as their needs change.

Patients who survive stroke, their caregivers, and their families are also a culturally diverse group with a variety of physical, emotional, psychosocial, and spiritual needs. The holistic assessment explores the impact of stroke on the patient and the family, what they expect after a stroke, the goals of care, and their values.

“People with serious illness such as stroke can suffer from several types of pain including physical, psychological, social, financial, or existential pain. What palliative care aims to do is to provide moments of relief from that suffering,” Krevat said.

“The more palliative care can be integrated into fields like neurology, the more we have an opportunity to relieve human suffering and improve the quality of life for patients and their families,” she added.

More Research Needed

The AHA scientific statement on palliative care after stroke also acknowledged the racial and ethnic health inequalities that exist in medicine in general and for stroke care, noting that Black and Hispanic populations have a higher risk for stroke, a greater likelihood of worse functional outcomes, and are less likely to receive prompt stroke treatment.

Krevat, who was not involved with the AHA statement, explained that systemic racism and structural inequalities in the health system can cause mistrust among Black patients and other patients of color, and these patients may be less likely to engage in palliative care following a stroke.

“When we see Black patients, because of the experiences they or members of their community have had, they can be reluctant to engage in palliative care or agree to it,” he said.

“From a provider perspective, it’s for that reason that cultural sensitivity is incredibly important in this field. Quality of life could mean different things to different patients, so it’s incredibly important that providers can explain palliative care treatment options in a way that resonates or makes sense based on their patients’ lived experiences.”

Experts who spoke with Medscape Medical News pointed to a number of resources that neurologists, clinicians, and other interested parties can use to learn more about palliative care, including the Center to Advance Palliative Care, the National Institutes of Health’s page on palliative care, the American Academy of Hospice and Palliative Medicine, and the International Neuropalliative Care Society.

Creutzfeldt, a co-author of the AHA’s 2014 scientific statement on palliative care following a stroke, recommended that document for recommendations on educational resources and effective communication techniques following a severe stroke.

However, experts also acknowledged that published research on palliative care following a stroke is limited. A systematic review of studies evaluating palliative care interventions and end-of-life care following a stroke identified seven studies published between 1990 and 2021 with descriptive quantitative designs and pointed out there were no randomized controlled trials on the topic.

Most of the studies identified in the systematic review focused on palliative care for patients at the end of their lives, rather than post-acute stroke care.

Krevat said this paucity of research may be in part because the return on investment for palliative care is hard to measure, given reimbursement for palliative care itself is limited.

“It’s hard to quantify the impact of interventions we don’t do, meaning the diagnostic or curative interventions a patient might not want or need and are avoided due to a discussion with a palliative clinician,” he said.

Heavy Patient, Caregiver Burden

Palliative care is also focused on relieving pain, while more traditional stroke research examines ways to bring patients back to baseline after a stroke or poststroke rehabilitation, Krevat explained.

“That can be less satisfying to study for care teams because physicians tend to be ‘doers,’” he said. “In reality, sometimes medicine can’t fix clinical problems we encounter, and physicians are not trained on what to do in these situations.”

In terms of further research, Creutzfeldt said there is a need for more effective communication tools about prognosis “that acknowledge the range of uncertainty, different beliefs, different goals and can be taught across training programs,” as well as ways to better identify a patient’s and their family’s goals of care.

“I would love to see research evaluating interventions that provide longitudinal patient and family support that goes across transitions of care and allows readdressing of goals of care along the way,” she said.

Krevat said studying the barriers of palliative care would be beneficial, including the reluctance of some providers to engage in palliative care, situations where traditional treatment plans may be at odds with patient goals for health, and identifying interventions that successfully offer palliative care equally across patient populations to potentially raise acceptance rates.

“In addition to exploring barriers, it will be important to design new solutions so that patients can access palliative care,” he said. “Studying how effective different interventions are in changing provider behavior so that they engage palliative care specialists when and where it is known to be beneficial would be one area I’d like to see explored.”

“The burden on patients and caregivers is evident, and the research that we are proposing would have such a huge impact by improving the way we prognosticate and communicate prognosis, the way we discuss goals of care after a severe stroke, and the way we support people longitudinally after a stroke,” Creutzfeldt said.

Creutzfeldt reported receiving funding from the National Institute on Aging and National Institute of Nursing Research for research in palliative care for stroke. Krevat reported no relevant financial disclosures.

Jeff Craven is an independent journalist living in Wilmington, Delaware.