Clinical Context

Palliative care includes much more than hospice services, lead author of the new position statement Lynne P. Taylor, MD, from the University of Washington, Seattle, and a fellow of the AAN, said in a press release. "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 their lives with symptom control," she added.

Palliative care improves quality of life for patients and families with life-changing illness by preventing and managing physical, psychosocial, and spiritual suffering. All clinicians provide primary palliative care; interprofessional teams provide specialty palliative care.

Study Synopsis and Perspective

The American Academy of Neurology (AAN) has released new expert guidance on palliative care for patients with stroke, dementia, Parkinson's disease, and other neurologic disorders. This position statement replaces 3 others regarding supportive care for patients with unique disorders of consciousness: persistent vegetive state, those who are irreve4rsibly paralyzed but retain cognition, and those who lack decisional capacity.

The position paper, developed by a joint committee of the AAN, American Neurological Association, and Child Neurology Society, was published online March 8 in Neurology.

The new paper, an update of previous position statements, includes palliative care guidance for different neurologic disorders across the life span.

For example, neuropalliative care for neonates deserves "extra consideration" because one third of pediatric deaths occur during the neonatal period, most often in the neonatal intensive care unit and after withdrawal of life-sustaining interventions, the investigators note.

For older children, neuropalliative care consultation benefits families trying to maximize the quality of the remainder of their child's life. Decision-making must consider the child's cognitive abilities, the diagnosis, the perceived level of suffering, parental values, and the family's understanding of the prognosis, the authors note.

Also important is engaging in shared decision-making with patients and families.

"This approach requires the physician to elicit a patient's goals, make recommendations based on whether medical treatments are likely to achieve those goals, and work with patients and families to finalize a treatment plan," the new guidance notes.

When treatments are physiologically futile, clinicians need to explain why interventions that may cause harm and have no benefit are not offered.

The authors cite cardiopulmonary resuscitation in the setting of cardiac arrest from irreversible herniation as an example of futility in the context of neurologic disease.

When life-prolonging care is no longer an option, clinicians have an obligation to shift the focus of care to preserving quality of life and comfort as much as possible, they add.

The investigators also broached ethical considerations for individual neurologic conditions. Concerns for disorders of consciousness include misdiagnosis or inaccurate prognostication, and serial examinations are needed to reevaluate levels of cognition, psychological state, decision-making capacity, and disease trajectory.

For stroke, the guidance suggests that neurologists encourage patients with retained decision-making capacity to complete advance care planning, given the risk for recurrent stroke and loss of capacity in the future.

For dementia, a proper and timely diagnosis can help patients and their families prepare for the consequences of cognitive dysfunction and loss of autonomy while respecting their identified values, the authors write.

They note that for Parkinson's disease, which is marked by slow functional and cognitive decline, neurologists must aim to anticipate and treat symptoms, address psychosocial and spiritual distress and caregiver burden, and engage patients and families in advance care planning before onset of cognitive impairment.

It is also important to anticipate patient preferences for future disability-specific decisions, such as those related to feeding tubes and mechanical ventilation, and to identify the patient's minimal acceptable outcome from these life-sustaining interventions.

Commenting for Medscape Medical News, Kate T. Brizzi, MD, a Boston, Massachusetts, neurologist with experience in hospice and palliative care, said that the updated position statement is "well-timed," as neuropalliative care has evolved dramatically during the last decade.

"In the last several years, I've witnessed a significant increase in trainee interest in the field, and there is growing recognition of how a palliative care approach can improve patient care, and hopefully outcomes," said Dr Brizzi.

Dr Brizzi noted that communication tools that help facilitate discussions around shared decision-making "have enhanced our ability to meet the palliative care needs of our patients and can be incorporated by any provider."

There was no targeted funding for this paper. One coauthor reported participation on member adjudication committees for clinical trials for Novo Nordisk, Sunovion, and Galapagos. The remaining authors have disclosed no relevant financial relationships.

Neurology. 2022;98:409-416.^[1]

Clinical Implications

• Neurologists offer palliative care to patients with life-changing neurologic disease throughout the life span and disease course, improving quality of life through symptom control.
• Disease-specific advance directives are available for dementia and ALS.
• Implications for the Health Care Team: Once it is decided to forgo life-sustaining treatment, clinicians should minimize subsequent suffering.

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