New Guidance on Palliative Care for Neurologic Disorders

UPDATED March 14, 2022 // Revised with added comments.

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.

Palliative care includes much more than hospice services, lead author of the new position statement Lynne P. Taylor, MD, 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," Taylor added.

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.

Guidance Across the Lifespan

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

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.

They note that discussions about prognosis are often difficult but critical. Previous research "supports that patients desire prognostic information even when prognosis is uncertain and appreciate when their physicians disclose the presence of that uncertainty," 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.

Ethical Considerations

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.

Hospices, which provide comfort-focused medical care as well as psychosocial and spiritual support, are reserved for patients believed to be in the last 6 months of their life if their disease follows the expected course.

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 re-evaluate levels of cognition, psychological state, decision-making capacity, and disease trajectory.

In patients with locked-in syndrome, a state of irreversible paralysis often with respiratory and vocal paralysis, consciousness may range from a chronic minimally conscious state to intact cognition.

Without careful examination, patients with preserved consciousness may be mistaken as having a disorder of consciousness and risk their decisional capacity being ignored, the researchers note.

These patients may need assistance from speech pathologists to identify techniques to enhance communication, such as careful "yes/no" questioning, communication boards, or advanced eye-gaze technology, they add.

Stroke, Dementia, Parkinson's Guidance

For stroke, the guidance suggests neurologists encourage patients with retained decision-making capacity to complete advance care planning given the risk of 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 PD, 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.

For patients with amyotrophic lateral sclerosis (ALS) and related disorders, clinicians should aim to document goals and treatment preferences prior to extreme weakness and aphonia.

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.

On the topic of withdrawal of treatment, the paper noted competent patients have the right to refuse life-prolonging therapies, including artificial nutrition, hydration, mechanical ventilation, and antibiotics. If physicians have a moral objection to removing life-support systems, they are obligated to transfer the care of the patient to another physician, the authors add.

Once a decision is made to forgo life-sustaining treatment, physicians should minimize subsequent suffering. The investigators note most symptoms at the end of life can be managed without sedation.

In broaching the "gap" in neurology training programs, the statement referred to a survey of 49 neurology residency programs. Results showed 42% of respondents reported being dissatisfied with their palliative care education.

Well-Timed Update

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

She praised the authors for doing "an excellent job" in highlighting the ethical challenges facing the neurology provider, particularly as it relates to prognostication in an uncertain setting.

Brizzi noted 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."

However, she added that the paper only briefly comments on the role of the neurologist in "lawful physician-hastened death."

"I anticipate that this will be an area of further discussion in the neurology and palliative care community in the future, as requests for hastened death are frequently encountered from patients with serious neurologic illness," she said.

Brizzi also noted the importance of understanding the reasons behind the request — and addressing patient worries related to end-of-life care, which can frequently help alleviate distress.

There was no targeted funding for this paper. Co-author Salvador Cruz-Flores, MD, Department of Neurology, Texas Tech University Center, El Paso, 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. Full article

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