GLUT1DS-related developmental and epileptic encephalopathy
May. 19, 2023
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The American Academy of Neurology (AAN) is issuing ethical guidance for neurologists on providing palliative care to people living with neurologic diseases such as stroke, Parkinson disease, and amyotrophic lateral sclerosis. The position statement is published in the March 7, 2022, online issue of Neurology®, the medical journal of the American Academy of Neurology, and was developed by the Ethics, Law, and Humanities Committee, a joint committee of the AAN, American Neurological Association and Child Neurology Society. This revision is an update to previous AAN position statements.
“Palliative care is a term that has become synonymous with hospice but it is actually a much broader practice,” said position statement author Lynne P Taylor MD, of the University of Washington in Seattle and a Fellow of the American Academy of Neurology. “Neurologists provide palliative care to people living with life-altering neurologic illnesses not just at the end of life but throughout the course of a disease, improving lives with symptom control. This position statement outlines how clinicians, physicians, and advanced practice providers should provide palliative care for people living with neurologic disease so they can have the best quality of life possible.”
The AAN position statement says research has shown that palliative care is beneficial for people with serious illnesses, when provided early in the disease process, and may lead to longer survival. It says clinicians should discuss palliative care with their patients early to maximize the management of their symptoms and begin the process of advance care planning.
The position statement explains that communicating a person’s prognosis helps them understand their disease and empowers them to set care goals. It says conversations on care goals should take place regularly so that patients and their families are more prepared to make decisions as the disease progresses. Clinicians, patients, and surrogate decision-makers should engage in shared decision-making to achieve goals and to finalize a treatment plan. As a disease progresses, a person may change their treatment preferences, so advance care planning should be a dynamic process, revisited at regular intervals.
“The American Academy of Neurology has seen the field of neuropalliative care continue to grow,” said Orly Avitzur MD MBA FAAN, President of the American Academy of Neurology. “Neurologists have been at the forefront of providing palliative care to people with neurologic conditions. Our hope is this AAN position statement serves as an important tool for neurologists, providing important ethical guidance as they deliver the highest quality care to people with diseases of the brain, spine, and nerves throughout their lives.”
For people who have had a stroke, the position statement recommends regular checkups to assess recovery as well as efforts to improve communication skills. It also recommends that people who are still able to make decisions complete advance care planning, which may be needed if they have another stroke.
For people with progressive neurologic diseases, advance care discussions are recommended early before their ability to make decisions is lost.
For those with amyotrophic lateral sclerosis, efforts should be made early in the disease to identify treatment goals before weakness sets in. For amyotrophic lateral sclerosis and other syndromes where the body is paralyzed but a person is still aware, the position statement recommends that specialists identify ways for people to communicate, such as with eye movements, so they can participate in decisions about their care.
For infants and children with serious neurologic disease, providing palliative care consultations can benefit families who are striving to maximize the quality of their child’s remaining life.
For people with disorders of consciousness, when diagnosis and prognosis are uncertain, it says repeated examinations are necessary to reevaluate cognition, psychological state, decision-making capacity, and disease trajectory. When people lack the ability to make decisions, advance care planning documents, if available, or surrogate decision-makers should guide ongoing care.
For people with irreversible disease who are still able to make decisions, the statement explains they have a right to refuse life-sustaining treatments under the ethical principle of respect for autonomy.
When a person transitions to end-of-life care, the position statement says that clinicians should shift the focus from disease-modifying therapies more to preserving quality of life and comfort as much as possible. People should be referred to hospice care when their life expectancy is less than 6 months. This can be difficult to predict for people with diseases like dementia, Parkinson disease or multiple sclerosis, so doctors should err on the side of hospice referral so as not to delay or miss an opportunity to provide palliative care.