Treating patients with multiple sclerosis who opt to use only supplements and other complementary and alternative approaches requires a great deal of tact and education, and input and support from all members of the multidisciplinary treatment team.
One of the most difficult challenges facing the interdisciplinary team of healthcare practitioners treating multiple sclerosis (MS) patients is the recalcitrant patient who believes that “Big Pharma” is “only in it for the money” and thus shuns the use of “synthetic pharmaceutical approaches” in favor of natural approaches.
The patient with relapsing-remitting MS may be misled or misinformed to believe that they are perfectly healthy with this approach owing to the very nature and course of their disease. However, MS is a serious disease with known progression patterns about which the healthcare professional has a moral obligation to educate the patient. Most importantly, early treatment and intervention with proven therapies is essential to preventing otherwise irreversible disability.
During the “Thanks, But I’m Going to Treat My MS My Way: Resistance to Disease-Modifying Treatment” panel at the 2013 Annual Meeting of the Consortium of Multiple Sclerosis Centers, Gail Hartley, MSN NP MSCN, of the Arcadia Neurology Center in California, described this phenomenon and shared a conversation she once had with a patient who resisted conventional treatment for her MS. Hartley said she asked, “If you had heart disease, would you wait until you have a heart attack to treat it?” When the patient responded, “no,” Hartley asked, “Why?” The patient said, “Because it’s my heart!” Hartley replied, “Well, this is your brain!”
The panel was chaired by Rosalind Kalb, PhD, vice president of the National MS Society Professional Resource Center, and David Rintell, MD, from Partners Multiple Sclerosis Center. The panelists were Hartley, George Garmany, MD, a neurologist with Boulder Neurology, CO; Deborah Miller, PhD, LISW, at The Cleveland Clinic Mellen Center for Multiple Sclerosis Treatment and Research; and Amanda Rohrig, PT, DPT, a physical therapist at Horizon Rehabilitation Centers in Omaha, NE.
The panelists discussed how to address and overcome the many challenges facing staff who deal with patients that resist treatment with recommended MS disease-modifying therapies.
Rohrig said that she actually enjoys working with this type of patient because they view physical therapy as “natural” and often treat therapists as though they are on their team, makig them more likely to comply with the therapy regimen.
Rintell said a major obstacle to providing effective MS treatment is that patients frequently do not tell the clinical staff exactly which supplements or other complementary/alternative therapies they are using. However, they often will divulge information to their friend the physical therapist that ultimately may be useful to the whole interdisciplinary staff in managing MS.
Miller said that we know the natural progression of untreated MS is not good. Sometimes the patient will state that they are fine, but the spouse will observe otherwise. She said that “special attention has to be devoted to tactfully addressing this, since we want to avoid the ‘teaming up approach’ to communicating with the patient suffering from cognitive issues associated with MS.”
The panel recommended that for these types of difficult patients it is most important to establish communication and trust while supporting basic health and wellness strategies, including vitamin D supplementation, smoking cessation (if the patient is willing), regular exercise, and other basic preventative approaches.
Garmany observed that sometimes it is only after their MS symptoms worsen and their health declines that recalcitrant patients will forego their original approach and reconsider disease modifying therapies, at which point he is very careful to avoid stating those four dreaded words, “I told you so.” Instead, he advises physicians to just focus on helping the patient deal with the current situation.
Because the cognitive and physical effects of MS can often leave patients unable to work and earn a sufficient living, the panelists stressed that the treatment team should educate patients and their family about supplemental security income disability plans so that MS patients can properly protect their family financial assets.
Garmany said he also recommends patients “who do not want to listen to medical doctors or nurses” reach out to and connect with peer organizations such as the National Multiple Sclerosis Society so they can listen to and learn from the experiences of other patients.