Supportive Care for Neurology Patients
Neuropalliative Care Services at Cedars-Sinai Offer Emotional, Mental and Spiritual Support, and Symptom Management
In June of 2021, retired nurse Linda Leaming, 70, of LaVerne, was admitted to Cedars-Sinai after suffering a stroke. She was delirious and refusing to eat and drink, and her husband, Rich Leaming, struggled with decisions about her care. Neuropalliative specialist Jessica Besbris, MD, director of Neuropalliative Care and the Neurology Supportive Care Medicine Program at Cedars-Sinai, came to his aid.
Besbris, a leader in the emerging field of supportive care for people with disorders of the brain and spinal cord, helped Rich evaluate Linda’s options, and he decided to allow Linda’s doctors to place a feeding tube for a limited time while she recovered.
A time-limited trial with a clear definition of success—like the one Rich opted for—is the type of decision Besbris helps caregivers and patients make on a daily basis. The strategy is also one of many described in a new American Academy of Neurology (AAN) position statement on neuropalliative care, which was co-authored by Besbris and published in Neurology, the academy’s peer-reviewed journal.
The AAN statement is the first on the subject of neuropalliative care since a brief initial statement in 1996, and Besbris said that it is a result of the subspecialty’s recent growth.
“We wanted to offer information on some of the palliative care needs clinicians might encounter in patients with glioblastoma, ALS [amyotrophic lateral sclerosis], Parkinson’s disease, and other neurological conditions,” Besbris said. “We also included an extensive reference list with guidelines, educational resources and data-driven research.”
Besbris is also working to expand access to neuropalliative care as education committee co-chair of the recently formed International Neuropalliative Care Society (INPCS). The organization’s website includes disease-specific resources and forums for providers, patients and caregivers, and all are represented among its leadership. “The organization is a new and important home for anyone who’s looking to learn more about neuropalliative care,” Besbris said.
“Dr. Besbris has used her unique expertise to expand access to palliative care for Cedars-Sinai patients with serious neurological illnesses,” said Nancy Sicotte, MD, chair of the Department of Neurology and Women’s Guild Distinguished Chair in Neurology at Cedars-Sinai. “And she represents us on the national and international stage, pushing forward the growth of this important subspecialty to bring its benefits to even more patients and families.”
Palliative care specialists—physicians, nurse practitioners, pharmacists, nurses, chaplains or social workers—see patients with serious, sometimes life-limiting illnesses, helping them manage symptoms while offering emotional, mental health and spiritual support.
Neuropalliative specialists have additional training in the complex symptoms experienced by patients with neurological disorders, including memory loss and inability to communicate their wishes to caregivers and physicians.
Help at a Crucial Moment
Linda had experienced migraine-like headaches since childhood. But in May of 2021, she developed a headache worse than the rest. “The pain was so intense I was just screaming, ‘You have to do something, you have to take me somewhere!’” Linda said.
At a local hospital, a CT scan of Linda’s head revealed that she had a rare condition called moyamoya disease, in which the main artery supplying blood to the brain becomes blocked or narrowed, and that she had experienced at least three strokes.
Linda was treated with medication to control her blood pressure and pain, but the hospital was unable to offer a treatment specifically for moyamoya, and after several days she was discharged. At home, her condition deteriorated.
“She wasn’t eating and she wasn’t drinking, and she became dehydrated and delirious,” Rich said. “Her headache was so bad that she could hardly function. She wouldn’t talk or open her eyes, and it was quite stressful.”
Rich decided to take Linda to Cedars-Sinai. There, a team of doctors determined that Linda wasn’t a candidate for surgical treatment, but that they could manage her moyamoya with medication. Meanwhile, they worked to improve Linda’s overall health.
To help Linda recover some strength, her Cedars-Sinai nutritionist suggested the feeding tube. Linda told Rich she didn’t want the tube, but she was confused and unable to fully understand the implications of medical decisions, and family members disagreed about whether the tube would actually be in her best interests.
The hospitalist caring for Linda, James Samuelson, MD, asked Besbris to help Rich decide what to do. Bebris visited Linda’s hospital room, but found Linda unable to have a conversation, so she called Rich, who was driving home from the hospital. They talked after several of his visits to see Linda.
“I tried to help Rich identify his hopes and worries for Linda and define what Linda would want if she were able to speak for herself,” Besbris said. “We discussed the benefits and possible drawbacks of a feeding tube and, if we went ahead, how we would define success.”
Besbris also encouraged Rich to share any stress he might be feeling as Linda’s caregiver.
“We formed a friendship over the phone,” Rich said. “Dr. Besbris is just a great person and she was concerned about both of us. She was a big help during my drives home, presenting options and trying to give me the opportunity to make the best decision I could. As difficult as it was, she made it a lot easier.”
After Linda received a nasogastric feeding tube, threaded through her nose and into her stomach, she became more alert and able to communicate. By July, her condition had improved enough that she could have a surgical feeding tube placed and be transferred to a rehabilitation hospital. Following weeks of speech, occupational and physical therapy, Linda was able to return home, and in October the feeding tube was removed.
Support Even in Recovery
Neuropalliative specialists can offer support if a patient’s neurologist or neurosurgeon needs help managing complex symptoms, guiding the patient through discussions about goals for their care, helping the patient cope with physical or spiritual distress, supporting caregivers, or resolving disagreements about treatment choices, Besbris said.
Palliative care is often confused with hospice care, which is focused on a patient’s needs near the end of life. Besbris prefers to be involved well before then. “I don’t want to miss the chance to get to know the patient and their family, explore their needs and enhance their lives for days, months, weeks or years before that point,” she said.
Neuropalliative care can also be a great help to patients like Linda Leaming, who will recover from their illness.
“In other illnesses, such as cancer, palliative care often isn’t involved until the disease is past the point of cure,” Besbris said. “But the range of possible outcomes for patients with stroke, traumatic brain injury, or many neurological illnesses is huge. It’s something that helps set neuropalliative care apart.”
In December, when Linda was recovered enough that they were planning a trip to Italy, Rich and Linda met with Besbris in her outpatient clinic. On the agenda for the 90-minute meeting was an advance healthcare directive for both of them, detailing their wishes regarding medical care if they are unable to make decisions for themselves.
“She asked us if we had one, and it’s a terrible thing for a nurse to say, but no, we didn’t,” Linda said.
Linda’s condition puts her at increased risk for another stroke, but Rich now has her wishes in writing—and she has his.
“I think it’s going to be very helpful,” Rich said, “just to know what we each want.”
Read more on the Cedars-Sinai Blog: How Supportive Care Medicine Helps Patients