Of 1,297 patients hospitalized with severe stroke from 2016 to 2019 at four Indiana Hospitals, 12% to 43% of severe stroke cases met with a palliative care team. Forty-three percent of patients who died in the hospital had participated in a palliative care consultation.1
“Many cancer centers have well-integrated palliative care programs. In neurology, somehow, we don’t think about suffering when we think about stroke,” says Diane E. Meier, MD, FACP, FAAHPM, director emerita and strategic medical advisor of the Center to Advance Palliative Care.
Many patients with chronic life-threatening illnesses (e.g., heart failure, COPD) do not receive palliative care.2 “Neurology is no different from the rest of medicine in this regard. But it’s pretty egregious in neurology because of the devastating diseases some patients have, and the low likelihood of regaining function for many of them,” Meier explains.
Since people can live a long time with stroke, it is not viewed the same way as cancer. “Everybody understands that people with cancer need access to palliative care because of loss of appetite, nausea, pain, depression, and anxiety,” Meier says.
However, severe stroke can be similarly devastating — not only for the patient, but for family members caring for that patient. They all may need symptom relief and emotional support that palliative care can provide. “It’s really a narrative mistake, that it’s not equally obvious that palliative care is important for people with stroke. At the institutional level, we need to circumvent that narrative,” says Meier, who offers several reasons why stroke patients do not receive palliative care:
• Neurology trainees are not exposed to palliative care by mandate. “Neurology residents don’t have any explicit attention during training to the role of palliative care in patients with serious debilitating illness who have to make choices and understand what they’re facing and what their options are,” Meier says.
For clinicians to view palliative care as routine and appropriate, it has to be part of residency training for neurology. “If it’s not part of the training, then it doesn’t become a routine part of practice,” Meier says.
• There is a persistent misperception that palliative care is only for patients who are about to die. “Surviving to leave the hospital is a successful outcome in the stroke world,” Meier notes.
Still, many patients who suffer an advanced stroke live for a long time. Often, long-term care or nursing home placement are required.
• Many clinicians think palliative care means giving up. Clinicians must understand palliative care is delivered at the same time as all other appropriate disease management (e.g., stroke rehabilitation, risk factor reductions, or treatments to promote brain healing). “It’s not in place of; it’s alongside of,” Meier says. “That’s not well-understood.”
REFERENCES
- Comer AR, Williams LS, Bartlett S, et al. Palliative and end-of-life care after severe stroke. J Pain Symptom Manage 2022;63:721-728.
- McConnell T, Burden J, Duddy C, et al. Integrating palliative care and heart failure: A protocol for a realist synthesis (PalliatHeartSynthesis). BMJ Open 2022;12:e058848.
Severe stroke can be similarly devastating as cancer — not only for the patient, but for family members caring for that patient. They all may need symptom relief and emotional support that palliative care can provide.
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