People facing complex, long-term illnesses need comprehensive care that addresses not just their physical health, but psychological, emotional and social well-being as well.
Palliative care is a medical specialty that addresses the quality of life of patients with serious chronic or disabling illnesses. Often associated with cancer, palliative care also has much to offer patients with neurologic diseases, which can cause a distressing loss of physical and mental function.
Neurologist and palliative care specialist Cara Siegel, MD, has launched a neuropalliative care program at UCLA Health for patients going through extraordinarily difficult situations. She stresses that the program isn’t meant to replace palliative care provided by the primary neurologist, but to offer additional support.
Not only for end-of-life
A common misconception is that palliative care is synonymous with end-of-life care or hospice, but patients can benefit from palliative care at any stage of disease, Dr. Siegel says.
“Some people may want to meet with a neuropalliative doctor at the beginning of their diagnosis,” she says. “I can help people plan for the future, talk about what to expect, help support their families. Others may prefer to talk to a neuropalliative care professional later in the course of their disease, if those things are being managed by their primary neurologist, and they may not have significant needs until the end of life.”
Dr. Siegel points out, however, that because of the emotional and psychosocial component of the practice, it’s important to take time to develop a comfortable and open relationship between the patient, the family and the provider. Because many neurologic diseases are degenerative, the patient may lose cognitive function or the ability to communicate effectively over time, and that can make it harder to build that foundation.
“Palliative care comprises excellent symptom management, understanding the patient and their emotional experience, and navigating decision-making about their future care,” she says. “Getting started earlier is better so we can establish a relationship and a rapport to have these important, serious discussions.”
Neuropalliative care for stroke
Not all neurologic diseases are degenerative, however.
In a recent paper for the Journal of Palliative Care, Dr. Siegel published tips for palliative care specialists working with patients who have suffered a stroke. A stroke is unique because it occurs suddenly, causing disability for which the patient and the family have not had an opportunity to plan and prepare.
“After a stroke, the patient may not be able to speak or communicate with their family or the health care team,” Dr. Siegel explains. “One other challenging thing is that prognosis in stroke can be uncertain, so it makes navigating these decisions particularly difficult.”
She points out that palliative care specialists should be aware of certain stroke-specific conditions that can fly under the radar, such as spasticity, pain and depression. These symptoms may not be immediately obvious and need to be elicited by the physician.
Furthermore, the sudden change in a stroke patient’s role can be upsetting and disorienting. The patient may not be able to continue working, or may find it difficult to transition from taking care of other family members to being taken care of.
These psychosocial challenges are just as important as the physical and cognitive challenges that follow a stroke, and palliative care is designed to address all of these issues.
“Palliative care is a team-based specialty,” Dr. Siegel says. “I work with a wonderful palliative care nurse, a social worker and a chaplain to provide additional support for patients and families.”
Patients may request a neuropalliative referral from their neurologist or primary care physician, or they can call directly at 424-259-7009.
Learn more about Neuropalliative Care services in Westwood and Santa Monica.
Caroline Seydel is the author of this article.
