The American Academy of Neurology (AAN) released a position paper in Neurology this month detailing guidance on caring for patients with life-limiting neurological illnesses. This guidance is meant to assist neurologists and other clinicians with handling situations that may arise with their patients receiving palliative care but is helpful for patients and families to understand as well for better patient-clinician communication and decision making.
The authors of the paper explain the meaning of palliative care since it's often confused with hospice. Palliative care is a service that hospice falls under. Palliative care is offered to patients with life-limiting illnesses and, unlike hospice, can start early in the disease process. It's meant to help patients maintain the best quality of life as long as possible with comfort, dignity, and education to make informed decisions at different points of their disease process.
Hospice, on the other hand, is a facet of palliative care at the transition point from life-prolonging care to comfort-focused end of life care when a patient is believed to be in the last 6 months of life if his or her disease follows its expected course.
Because of the subject matter, communication in palliative care can be difficult and uncomfortable between clinicians and patients and their families, especially with topics of disease prognosis. But open conversation about prognosis is key to helping patients and families decide on the course of their medical care. That includes being upfront about prognosis uncertainty.
As stated in the position statement, typically patients want to know information on their prognosis even when it's uncertain and appreciate when their physicians disclose that uncertainty. When a prognosis is uncertain, the AAN recommends physicians keep information general and flexible in terms of best/worst case scenarios and most likely functional outcomes for a particular illness. Predictions for life expectancy should be given in time intervals, such as day to weeks, weeks to months, or months to years, rather than as specific time frames.
In palliative care, clinicians and patients should have regular conversations about future end-of-life plans and clinicians should document patients' wishes to guide family or friends who may later need to make treatment decisions if patients lose the capacity to do so.
Clinicians should specifically ask patients about their treatment goals and make recommendations based on whether medical treatments are likely to achieve those goals. In the case that a treatment doesn't offer any physiological benefit, it is the clinician's responsibility to make the decision process simpler by explaining that treatment is not an option.
Physicians should also encourage patients to complete advance care planning documents that specifically state their wishes. This was stated to be especially important for stroke patients with intact decision-making capacity since they're at an increased risk for more strokes that could take away that capacity.
Early advance care planning shortly after diagnosis is also recommended in patients with progressive neurological diseases that will take away their decision-making capacity, like dementia and Parkinson's disease.