Although significant strides have been made in treatment, multiple sclerosis (MS) is often a debilitating disease, and patients are susceptible to conditions such as pressure sores, intractable spasticity, and chronic pain. It is also true that MS is very difficult to prognosticate, as there is a wide range in the trajectory of the disease course; some patients may live a nearly normal life expectancy with death from cancer or heart disease, while other patients may lead a progressive disease course, with severe and debilitating symptoms. MS is an unpredictable disease even in the eye of the experts, which necessitates the providers to discuss about wishes and goals for each patient from early into the disease and continuously throughout the disease course. Additionally, providers should work together with the patient and the interdisciplinary team to ensure the most comfortable living environment. Palliative care is a multidisciplinary approach, encompassing the physical, emotional, social, and spiritual care for people with serious illnesses. Palliative care can be provided to patients regardless of the stages of their diseases and in numerous care settings, such as home, outpatient, in-hospital, or hospice. In contrast to traditional medical care that focuses on patient’s disease or illness, asking “what is the matter?”, palliative care focuses on patient’s and family’s needs, asking “what matters to you?”¹

In this chapter, we will focus on ways to improve comfort and quality of life in MS patients.

Given complexity of MS and its incurable nature, it is never too early or too late to consider getting palliative care involved as the extra layer of support in the care of MS patients. Below are possible triggers for consulting palliative care.²

The Kurtzke disability status scale or DSS and the expanded version or EDSS are commonly used to assess the disability in MS.³,⁴ The number ranges from 0 for normal examination and function up to 10 for death due to MS.

MS patients are generally considered to be in “advanced” stage when EDSS is 6.5 or greater, defined as requiring constant bilateral walking assistance (canes, crutches, or braces), or is mostly wheelchair-bound. At this stage, patients are at significantly higher risk of increase in symptoms that can cause life-threatening complications.

Increase in EDSS indices is an opportune timing to consider getting palliative care involved, if not done yet.

When triggers as above are recognized, providers should further explore what the patients and families are experiencing. Open-ended questions and attentive listening are very useful in exploring the values and concerns and often can be therapeutic for the emotional distress. Studies have shown that people with disabilities have consistently stated that they want to be heard and to have their providers learn from them; it is important that providers let go of any preconceived ideas about what is important to the patients and make no assumptions about what they may want.⁵

We will introduce some of the communication skill tools and resources that any providers can use to facilitate palliative care conversation. However, if providers feel uncomfortable with the conversation, getting palliative care specialists involved early in the process is recommended.

1. SPIKES: Protocol for breaking bad news⁶

Although SPIKES, the six-step protocol for disclosing unfavorable information, was originally developed for cancer patients, this can be applied to any providers who are discussing serious conditions with the patients.

S = “Setting up the interview.” Arrange for some privacy, involve significant others of the patient, arrange for most comfortable physical positioning (e.g., sitting down, level with patient), and manage time constraints and interruptions (e.g., inform the patient of any time constraints you may have).

P = “Perception.” Explore the patient’s perception of the current situation by using open-ended questions (e.g., “What is your understanding of your medical situation right now?”).

I = “Invitation.” While a majority of patients desire full information, some patients do not. Aim to get a clear invitation from the patient to share information, but accept the patient’s right not to know (e.g., “How would you like me to give the information about…?” “Are you the sort of person who…?”).

K = “Knowledge.” Start at a place compatible with patient’s current comprehension when giving knowledge and information to the patient. Avoid medical jargon, and give information in small chunks. Check periodically as to the patient’s understanding.

E = “Empathizing and Exploring.” Acknowledge patient’s emotions and their origins. Explore, validate, and empathize their emotional responses.

S = “Strategy and Summary.” Make a plan via explanation and collaboration. Summarize main areas. Contract for next contact.

2. NURSE: Responding to patient emotions⁷

NURSE is a useful mnemonic for ways to address emotions and articulate empathy.

N = “Naming.” Naming emotion shows you are attuned to what she is experiencing. (e.g., “It sounds like you are frustrated.”)

U = “Understanding.” Empathize with and legitimize the emotion. (e.g., “This helps me understand what you are thinking,” “I cannot imagine what it is like to…”)

R = “Respecting.” Praise the patient for strength. (e.g., “I can see you have really been trying to…” “I am very impressed with how well you’ve care for your mother during this.”)

S = “Supporting.” Providers can express concern, articulate their understanding of patient’s situation, express willingness to help, make statements about partnership, and acknowledge the patient’s efforts to cope. (e.g., “I will do my best to make sure you have what you need.”)

E = “Exploring.” Ask the patient to elaborate on the emotion. (e.g., “Could you tell me more about what you mean when you say that…”)

3. REMAP: Address goal of care⁸

REMAP is the mnemonic of the talking map designed to give guidance through a complex conversation regarding goals of care. The processes of REMAP encourage providers to remain flexible and adapt their recommendations to what they hear from the patient based on the shared decision-making.

R = “Reframe.” Provider can paint a big picture “headline” that lets the patient know things are in a different place. You may need to share serious or bad news first. (e.g., “We’re in a different place,” “Given this news, it seems like a good time to talk about what to do now.”)

E = “Expect emotion.” Actively attend to the patient’s emotional response and respond with empathy. Refer to the mnemonic NURSE as explained above. (e.g., “It’s hard to deal with all this,” “I can see you are really concerned about…”)

M = “Map out patient goals.” Ask open-ended questions to help patients think about the values and what’s important to them. (e.g., “Given this situation, what’s most important to you?” “As you think toward the future, what concerns you?”)

A = “Align with goals.” Align with the patient’s values by explicitly reflecting them back to the patient. (e.g., “As I listen to you, it sounds like the most important things are…”)

P = “Propose a plan.” If the patient gives permission, use those values to propose a medical plan that matches patient values. (e.g., “Here’s what I can do now that will help you do those important things.”)

MS patients are susceptible to conditions such as pressure sores and intractable spasticity, which can lead to chronic and complex symptoms that are difficult to manage.