After a stroke, patients need customized palliative care

People recovering from a stroke should have a well-coordinated medical team to personalize care, optimize quality of life and minimize suffering, according to a scientific statement published Monday in the American Heart Association journal Stroke.

The statement is the first in the United States to outline fundamental palliative care for stroke survivors. Palliative care is patient- and family-centered care that improves life by anticipating, preventing and treating suffering.

“The majority of stroke patients need access to some form of palliative medicine,” said Robert Holloway, M.D., M.P.H., lead author of the statement and professor and chairman of the neurology department at the University of Rochester in Rochester in New York. “The stroke team and its members can manage many of the palliative care problems themselves. It encourages patient independence and informed choices.”

Palliative care should be a collaboration between patients, families, a stroke team and various providers, including neurologists, neurosurgeons, primary care providers, nurses and therapists, he said.

Stroke survivors or family members should expect healthcare providers to:

• Talk about preferences, needs and values as a guide to medical decisions.
• Discuss what aspects of recovery are most important.
• Have effective, sensitive discussions about the prognosis and how to deal with physical or mental losses from a stroke. If necessary, they should discuss dying.
• Help guide through choices about life-sustaining treatment options. Providers should address pros and cons of CPR, ventilators, feeding tubes, surgery, do-not-resuscitate orders, do-not-intubate orders and natural feeding
• Know the best treatment options for common post-stroke symptoms, including pain, other physical symptoms and psychological problems like depression and anxiety.
• Engage a palliative care specialist if complex issues arise.
• Help preserve dignity and maximize comfort throughout the course of a stroke, including during the dying process and when nearing death.

“Stroke is a devastating disease that has received little attention in the area of palliative care so far,” Holloway said.

Nearly 800,000 people have strokes annually. About 130,000 stroke-related deaths occur in America yearly. Up to 30 percent of all survivors are permanently disabled.

To help improve access to palliative care for stroke survivors and their families, the American Heart Association/American Stroke Association also announced its support today for legislation aimed at improving palliative care services for patients with serious illness.  The Palliative Care and Hospice Education and Training Act introduced by Rep. Eliot Engel, D-N.Y., and Sen. Ron Wyden, D-Ore., would establish education centers and support career development in palliative medicine. The Patient Centered Quality Care for Life Act introduced by Rep. Emanuel Cleaver II, D-Mo., and Rep. Spencer Bachus, R-Ala., would expand palliative care-focused research, create a workforce training initiative, and establish a stakeholder summit to address patient-centered care, among other measures.  

For more information about the new scientific statement, check out our official news release,