Landing in the hospital with a serious illness such as stroke can be one of the worst experiences of a person's life.
Why, then, do so few take advantage of a medical specialty aimed at easing pain and suffering during their hospital stay?
Palliative care professionals focus on improving a patient's quality of life by emphasizing pain management and symptom relief during medical treatment. They also help the sick person and their loved ones deal with stress and grief and guide them through important decision-making.
But only 1 in 5 people hospitalized with a severe stroke during a recent three-year period received a palliative care consultation, according to a recent study in the Journal of Pain and Symptom Management.
"I don't think that every patient who has a severe stroke necessarily needs a palliative care consult, but I have a feeling it should be more than 20%," said senior author Dr. Alexia Torke, a research scientist at the Regenstrief Institute in Indianapolis.
"Such a life-changing event really needs a lot of support for the patient and family, and one aspect of support both coping with a life-threatening illness and making decisions is palliative care," she added.
Palliative care is a relatively new field. It is sometimes mistaken for hospice care, which "is specifically focused on the very end of life and those who are dying," said Dr. R. Sean Morrison, chairman of the Brookdale Department of Geriatrics and Palliative Medicine at Mount Sinai in New York City. He was not part of the study.
But palliative care is meant to ease the suffering of all patients, regardless of their prognosis, Morrison and Torke said.
"Palliative care is team-based care that's focused on improving quality of life for people living with serious illness of all ages, and can and should be provided at the same time as all other appropriate treatments, including those to prolong life," Morrison said.
"When palliative care is provided at the same time, people have reduction in pain and other symptoms, their families feel better cared for and supported, and in cancer, for example, they live longer," he added.
To see how often palliative care is being used to help patients, Torke and her colleagues tracked close to 1,300 severe stroke cases at four Indiana hospitals between 2016 and 2019. They reviewed patients' charts to see whether a palliative care team met with either the patient or their family.
The rate of palliative care provided varied widely, the researchers found, ranging from 12% to 43% of severe stroke cases depending on the individual hospital.
Only 43% of patients who died in the hospital had received a palliative care consultation, results showed.
Palliative care "took place for less than half of the patients who died in the hospital, where the patient and family probably faced difficult decisions and could have used a lot of support," Torke said.
The researchers also found that only 24% of patients who died within three days of hospitalization received palliative care, versus 51% of patients who died on or after day four.
"We did find, on a positive note, that patients with a higher stroke severity did tend to get more consults, so that's good," Torke added.
Because palliative care is a new field of medicine, many doctors don't know much about it and when it should be used, Morrison said.
"The vast majority of practicing physicians have never experienced palliative care and weren't trained in it, so they don't know when to call them when needed," Morrison noted.
That lack of understanding extends to people who are hospitalized, as well.
"Patients and families are confused about what palliative care is, and the benefits they can receive from it," Morrison said. "They don't know to ask for it."
The confusion between palliative care and hospice also might dissuade people from requesting this service, Torke said.
"We are there to support patients and families in making decisions, no matter whether they're making choices to pursue life-sustaining treatments or whether they want to focus their care on comfort or eventually transition to hospice," Torke said. "There's a fear associated with palliative care, that having a palliative care consultation might mean we're in some way giving up or not as supportive of the patient's own preferences and choices."
Doctors need better training so they can identify situations where a person would benefit from a palliative care consultation, Torke said.
"It might be that the clinician notices really high distress in either the patient or their family member, just difficulty coping," she said. "Those might be times when a palliative care consult is needed."
Morrison said hospitals can help by weaving palliative care into the normal routine of patient care, making it just another service being offered.
"In my hospital, we were one of the very early pioneers in palliative care," Morrison said. "I now have teams in all of our intensive care units, including our stroke unit and our oncology program. We've just become part of the hospital landscape."
Palliative care experts also need to do a better job informing the public about the benefits of their specialty, Morrison said.
"I can guarantee that if you see my palliative care colleague your symptoms are going to be better managed, your family is going to be cared for better, and your survival is going to be prolonged. It just needs to be part of routine medical care," he said.
Bottom line: "Patients and families need to be prepared to ask for it because until they start doing that, doctors are not going to be able to provide it adequately because they're not going to think about it," Morrison said. "It's really their right, and they will get better health care."
Harvard Medical School has more on palliative care.
SOURCES: Alexia Torke, MD, MS, research scientist, Regenstrief Institute, Indianapolis; R. Sean Morrison, MD, professor and chair, Brookdale Department of Geriatrics and Palliative Medicine at Mount Sinai, New York City; Journal of Pain and Symptom Management, Jan. 4, 2022