June Halper on How Supportive Team Care Can Help Patients With MS as Their Disability Increases

While there may be negative connotations attached to the term “palliative care,” this type of care could be called “supportive team care” to better express its potential to educate and care for patients with chronic illnesses such as multiple sclerosis (MS), said June Halper, MSN, APN-C, MSCN, FAAN, chief executive officer, Consortium of Multiple Sclerosis Centers.

Transcript

Does palliative care play an important role in multiple sclerosis, and do you think there is a need for greater understanding and uptake of this type of care?

Well, let’s differentiate palliative care from hospice care. Hospice care, of course, is covered by Medicare, most insurance companies. Hospice care usually is put in place when someone has less than 6 months to live, and usually it’s a chronic but fatal disease, such as heart disease or cancer. In multiple sclerosis, on the other hand, when the person is diagnosed, say the average of 22 or 23, they can expect to live a fairly long life expectancy. And in many cases, if they’re not treated right away or they have a very serious disease course, they might get to a point when no medication for disease modification is eligible—they’re eligible for that. So, it might get to a point where care they are eligible for is palliative care.

Palliative care is, in my mind, supportive team care. It’s not just the doctor or the nurse, it’s the whole team. And that could last for a long, long time. So palliative care in MS is one of the very important models of care that the CMSC, or the Consortium of MS Centers, has just developed a consensus statement on and it’s now on our website. And it’s an educational model we just started to teach at our annual meeting. We had our first session there where we talked about cases and models and how do you manage it and who’s involved and again, people certainly get frightened by the word “palliative care,” so one of the things we’re looking at is changing the name to supportive team care and maybe that is more appropriate. But it’s a real model of care and it means a lifelong, supportive network of people that come in and educate, provide care, and support the patient through the difficult times of possibly an increasing disability.