Study Shows Lack of Palliative Care Coordination in MS Care

Patients with neurological diseases are likely to need palliative care near the end of life. But UK researchers found a wide variation in the coordination of palliative care and neurological care services—with multiple sclerosis (MS) patients having the least integration.

The study, published in BMC Neurology on May 10, 2016, was conducted by Liesbeth M. van Vliet, PhD, of the Department of Palliative Care, Policy and Rehabilitations, Cicely Saunders Institute, King’s College, London, and colleagues.

There are several potential barriers to integrating such care, the authors noted, since "specialist palliative care experts have been found to be reluctant to take on care for non -cancer patients due to a lack of disease-specific knowledge."

Neurologists also might not refer patients partly because the are "afraid to diminish patients' hope by introducing palliative care" and patients temselves might balk at a referral, thinking palliative care means they are at the end of life.

The authors did their study to map out the state of care integration now, in preparation for doing more studies one potetial models of care.

The study was carried out as “an important first step," they wrote.

They looked at care at eight care centers with both neurology and specialist palliative care services in England and Wales and held workshops to identify the similarities and differences among them. Based on findings at the workshops they developed a questionnaire including how neurology and specialist palliative care were integrated.

One approach that could be considered is that endorsed by the American Stroke Association, calling for neurology providers to get training so they can provide "primary palliative care in less complex situations"

Another is providing palliative care as an "add on" to neurology care, without the palliative care specialist taking over all care for the patient. "While such models seem plausible, we believe they should also be rigoursly tested before widely implemented," the authors wrote.

In their own study of care in the UK they found that among the eight centers, the MS services saw the most patients (500 to 5,000 patients.)

But most of the sites did not have joint visits or formal links between palliative care and neurology services for MS care. Two sites did have such care, including on which held a complex problems clinic with palliative care specialists every three months.