Palliative care—an approach that helps people manage pain and other symptoms during all stages of a serious illness, rather than simply being an ‘end-of-life’ strategy—can help improve quality of life for stroke survivors as well as their family members, according to a new scientific statement published recently in the journal Stroke.
“Stroke is often thought of as an event that is over quickly, but that is not true,” said Claire Creutzfeldt (University of Washington, Seattle, USA), chair of the statement’s writing group. “Even though the majority of strokes are not immediately life-threatening, every stroke is life-altering, and every stroke requires high-quality, person-centred care. Integrating palliative care principles into stroke care is fundamental for all patients and at every stage after a stroke.”
A recent press release from the American Heart Association (AHA) details that 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 release adds.
This new statement is intended to complement the AHA’s 2014 scientific statement on palliative and end-of-life care in stroke, which covered core palliative care competencies and skills for healthcare 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 association’s new statement therefore emphasises “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 healthcare 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-centred palliative care requires a comprehensive assessment of symptoms and needs that go beyond physical pain to include emotional, psychosocial, spiritual and existential distress, according to the AHA. As such, 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 recognise 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 individualised 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, spiritual and psychosocial support are all important parts of high-quality stroke care for patients and care partners, and the writing group for the AHA’s recent scientific statement therefore 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 recognise and manage patient and family needs.
Post-acute care
According to the AHA, there is limited research on palliative care for patients and their families 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 stroke patients are referred to after leaving a hospital. Post-stroke pain is greatest at four-to-six months and also more than two years after a stroke, yet continues to be underdiagnosed and therefore undertreated, the association states.
“Integrating palliative care principles into stroke care is fundamental for all patients and at every stage after a stroke.”
Two recent studies in the USA including both ischaemic and haemorrhagic stroke cases reported that approximately 34–45% of patients were discharged home without additional services, such as home healthcare 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.
And, 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% and 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 or ‘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. The recent scientific statement details that, while most people who die after a stroke do so in the hospital or in a nursing facility, the percentage of stroke patients who die at home is increasing.
“Since the most common symptoms after stroke at the end of life include pain and dyspnoea […], it is important for healthcare professionals to focus on managing these symptoms and counselling families on what to anticipate,” the AHA’s recent release also states. “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.”
Post-stroke racial/ethnic care inequities
Disparities in stroke incidence, outcomes and acute treatment exist, the statement continues, 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.
According to the AHA, studies show that 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 has also found trends whereby Black, Hispanic and Asian patients were discharged to hospice care less frequently than white patients.
The statement’s writing group notes that, while some of these factors may be attributable to cultural differences, the continuing impact of historical health inequities in the USA “should not be ignored”—and data show that a significant indicator of palliative care utilisation is the hospital where the patient receives care, suggesting that “system-level inequities are partially responsible”.
