Current palliative care models do not offer patients with advanced neurological illness the support they need to reduce suffering, the physician-authors of review contend. A new, evidence-based palliative care framework with the aim of improving quality of life is needed for these patients and their families, they say.
Neurological illnesses such as Alzheimer’s disease, Parkinson’s disease and stroke are common. Evidence from clinical trials shows that palliative care interventions, whether outpatient or home-based, improve patient and caregiver outcomes, according to the review, commissioned by and published in The Lancet Neurology. The authors’ new model of care includes routine screening to pinpoint individual palliative care needs early on, integration of palliative care approaches into routine neurological care, and collaboration between neurologists and palliative care specialists.
“Suffering is the fundamental concern of palliative care. To improve care we must address the total pain of neurologic illness — not just physical pain, but also psychological, social and spiritual distress,” lead author and neurologist Benzi Kluger, MD, of the University of Rochester Medical Center, Rochester, NY, said in a statement.
The review highlights not only long-term policy changes, but actions that the authors said can be taken now to help make a difference in patients’ care experience. This includes empowering neurology teams to provide better whole person, patient-centered care and working with insurance companies and hospitals to incentivize care that improves outcomes while reducing costs and unwanted hospital stays, Kluger and colleagues wrote.
Most people will be affected by neurological illness at some point in their lives, either as a patient or as a caregiver, Kluger noted.
“The focus needs to be on the immediate and practical work of helping to prevent and alleviate suffering. If we use that as our north star, everything else will follow suit,” he said. “I believe this is the ultimate test of our healthcare system. Are we going to finally provide the care and support people need? I’m hopeful that we can.”
Related articles:
U.S. palliative care duration comes up short, international study finds
Place of death for patients with cancer linked to states’ palliative care laws
Validating fears helps shift patients’ palliative care expectations: study
Palliative care isn’t addressing patients’ psychological distress, study finds
