Excellent clinicians are aware of the level of uncertainty in which we practice and empathize with the challenge that patients and families face in the face of that uncertainty.
Recently the New York Times published a touching piece, “Dying in the Neurological ICU,” written by Dr. Joseph Stern, a physician whose brother-in-law suffered a devastating brain injury after an aneurysm ruptured. To add to his heartache, Dr. Stern’s sister, who was the patient’s wife, had died only a year before.
Dr. Stern described the difficult medical decisions he had to make after his brother-in-law remained comatose despite a successful neurosurgical procedure to treat the bleed and the maintained optimism of the neuro-ICU specialists. Ultimately, while his brother-in-law was still alive, he was not alive—he would never regain the mental or functional status that would make his life meaningful, and Dr. Stern decided to withdraw life-prolonging therapies and focus on comfort therapies.
Dr. Stern wrote about the uncertainty with which we all must grapple, despite being experienced, knowledgeable, and caring clinicians. It was with palliative care physicians that he was able to have the vulnerable conversations required to make these incredibly difficult, but necessary, decisions.
Palliative care focuses on helping patients who have chronic, life-limiting illnesses live as well as possible by addressing physical, emotional, social, and spiritual distress. Neuropalliative care is the practice of palliative care specifically for patients with neurological diseases. It is practiced by neurologists who have completed fellowship training in palliative care or palliative care physicians with a clinical focus in neurological diseases, like myself. Neuropalliative care has been found to significantly affect the quality of life of patients with neurological diseases in addition to supporting their families and caregivers.
Neurological diseases are unique because they often have limited treatment options, are sometimes incurable, and are slowly progressive, leading to decades of living with the disease and its burdens. These diseases leave patients with the inability to speak, or sometimes even unable to think, making it that much more important for early, regular conversations about what brings their lives meaning and purpose and how to link that with their medical care. This is how palliative care helps patients like Dr. Stern’s brother-in-law.