LISBON, Portugal — The European Academy of Neurology has developed a new guideline on the palliative care of patients with multiple sclerosis (MS).

Increasingly, palliative care is becoming a topic of interest and concern to neurologists all over the world. Delegates to the Congress of the European Academy of Neurology (EAN) 2018 here discussed palliative care as it relates to neurology in general — but also in the setting of multiple sclerosis (MS) in particular — as a guideline targeted to patients with severe MS was discussed.

The guideline was presented by Alessandra Solari, MD, Fondazione IRCCS Istituto Neurologico Carlo Besta, Milan, Italy, but is not yet published.  

The new MS guideline emphasizes the need for a multidisciplinary and multiprofessional approach to care, Wolfgang Grisold, MD, Medical University of Vienna, Austria, who is secretary general of the World Federation of Neurology and a coauthor of the document, told Medscape Medical News. For example, a palliative care team could include a neurologist, a nurse, a physiotherapist, and a social worker.

Grisold became passionate about palliative care when he managed patients with terminal brain cancer and others with amyotrophic lateral sclerosis (ALS), he said. These conditions have a similar short time course, typically a year or 18 months from diagnosis until death.

But neurologic conditions requiring palliative care are not restricted to tumors and ALS. Such care could also be pertinent for patients with severe dementia, stroke, Parkinson’s disease, brain trauma, and MS.

Patients with severe MS may be suffering intolerable pain and spasms and be unable to move freely, Franz Fazekas, MD, Medical University Graz, Austria, and new EAN president, told Medscape Medical News.

“This is different from, for example, neuro-oncology, where after probably a limited time, patients will pass away, and the same is true for some neuromuscular diseases. But with MS, there can be a prolonged period of suffering.”

Pain Management

Pain management is part of palliative care, David Oliver, MBBS, FRCP, a palliative care expert and honorary professor at the University of Kent, Canterbury, United Kingdom, told attendees during a workshop on palliative care in neurology held during the EAN meeting.

“We thought Parkinson disease and ALS patients didn’t have pain, but studies show they do.”

In addition to pain and mobility issues, these patients may suffer social isolation, emotional distress, and cognitive decline, said Oliver. They may also fear death or dying, or what some refer to as “the elephant in the room,” he said.

Doctors are encouraged to have open discussions with their patients about death and dying. This, said Oliver, includes broaching the topic of when and whether to withdraw treatment.

The palliative care team should maintain open lines of communication with the patient and family. Discussions should include advanced care planning, especially in cases where cognitive deterioration is expected, said Oliver.

He noted an Australian survey showing that 36% of patients diagnosed with ALS said they were dissatisfied with the manner in which the diagnosis was relayed to them.

The new MS guideline recommends “a shift” in focus from end-of-life care to palliative care “where you know from the beginning there is a restricted time and you have to make life as comfortable as possible,” said Grisold. “Palliative care is like a coat you put around the patient.”

Palliative care should be initiated early in the trajectory of care, stressed Oliver. He pointed out that at least for patients with cancer and heart failure, evidence shows that early initiation of palliative care helps ease their fears.

He stressed that patients often don’t want to bother physicians about their complaints, so it’s up to the doctor to ask about physical and psychosocial issues.

Caregiver Burden

The MS guideline also emphasizes the importance of caregivers, “who are often neglected,” said Grisold.

Families of a patient facing the end of life are under enormous stress. There are demands on their time and financial resources, with some caregivers having to leave work to help tend to their loved one.

The guideline authors favored the idea of structured “debriefing” for caregivers by the palliative care team to “take away some of this burden,” said Grisold.

There are also emotional and spiritual issues related to the end of life to consider.  

A delegate attending the workshop pointed out that societies are increasingly multicultural and represent different religions, while the legal and ethical systems still seem to be based on Christianity. In this complex environment, doctors dealing with palliative care will need additional guidance, she said.

Developing guidelines for palliative care in neurology is “a complex process” that takes time and resources, Raymond Voltz, MD, director, Center of Palliative Medicine, University Hospital Cologne, Germany, told workshop attendees, and at the end of that process, the guidelines are not always followed.

Hundreds of patients and caregivers from seven European countries played an instrumental role in the development of the MS guideline, Sascha Köpke, PhD, RN, Institute of Social Medicine and Epidemiology, University of Lübeck, Germany, said in an EAN press release.

This involvement illustrates the emphasis on shared decision-making that underscores patient autonomy and promotes the individualization of diagnosis and therapy, the researchers noted.

The EAN has long supported this patient-centred approach. While including consumers in the guideline development was resource- and time-consuming, it was also “highly rewarding,” said Köpke.

“Patients and caregivers really helped us to formulate the guideline in a way that was in line with actual practice and their own needs. We were able to see clearly which of our ideas met with approval or rejection.”

The process and findings of this collaboration with patients and caregivers, gleaned through an online survey and focus group meetings (with Köpke as first author), were presented as a poster here at the meeting.

“The involvement of patients and caregivers increases the reliability and relevance of the guideline for clinical practice,” said Köpke.

The EAN aims to eventually have similar guidelines for other neurologic conditions, said Fazekas.

The EAN is not the only group embracing the concept of palliative care. The World Federation of Neurology, too, is incorporating palliative care sessions into its meetings, said Grisold.

“A few years ago, it would have been impossible that people would want to have that.”

The guideline was funded by the EAN and the Foundation of the Italian MS Society. No relevant financial relationships were disclosed.

Congress of the European Academy of Neurology (EAN) 2018. Symposium 4: Palliative care and Neurology. Presented June 16, 2018.