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Palliative Care in Multiple Sclerosis

By Cherie C. Binns
toralf-thomassen-0PCcpndhtqM-unsplash-(1).jpgWhile most persons living with multiple sclerosis do well on disease-modifying therapy and symptom management medications or lifestyle changes, there is a small group who do not and for whom life can be challenging because of the intensity of symptoms that are not well managed. For some of this few, a level of care called “palliative” may be an answer. Palliative care can be in place for two weeks or a dozen years depending on the needs of the individual.

What is palliative care? It is comfort care for the duration of the journey. Often some standard care or routine care is not done because it is not necessary, presenting a burden to the individual receiving care, or even unnecessary costs being incurred. Palliative care works with the individual and any support network or family that is available to target specific needs and prioritize them to give the greatest benefit to the individual receiving care.

Let us say, for a moment, that your spasticity has become unbearable. You are maxed out on meds to manage it and the side effects are making you miserable. Palliative care may focus on relaxing that spasticity with focused physical therapy, assisted movement, targeted injections to provide pain relief to muscles that will not relax. Perhaps a Baclofen pump is the next step. There are a number of things other than medication and stretching that can be done when things are severe.

Maybe your pain is so severe it is preventing you from getting decent sleep and you are becoming so miserable from fatigue and discomfort that your mood is darkening. Regular measures have been tried to manage pain, sleep and mood and it is not working. Palliative care may do more intensive pain intervention that promotes better sleep and mood ultimately lifts.

What is the rule of thumb as to when to consider palliative care? Generally, if you have needed an ER or hospital visit at least three times in a year (frequent falls, pain management, infection, bowel or bladder interventions) you might want to consider this as a course of treatment. Most hospitals with more than 100 beds in the U.S. now have palliative care teams that can be activated for those who need a more frequent or higher level of care to manage the worst symptoms. Some nursing facilities offer this but they are not as common. Many “medical homes” or doctor’s offices also have an individual who can initiate Palliative Care and even manage the services a person receives. A number of insurance providers have a staff dedicated to meeting the needs of complex care needs and setting up and managing a palliative care program.

If there is a lack of funds to cover the projected needs or insurance is inadequate, the Home Care Program at MS Focus: the Multiple Sclerosis Foundation can step in and assist with funds. If physical, occupational or speech therapy is needed in your palliative care plan and there are no other funds available for what is needed, contact Sherroll Patterson, associate director of Homecare and Patient Assistance Programs at MS Focus, to set that help into place. Palliative care plans can be enacted and carried out in your own home in most cases.

Palliative care is not hospice care but can transition to hospice care if the individual has many factors complicating their treatment. People in palliative care programs may go to hospice and back to palliative care during the course of several months or years.

For more information on what palliative care is and how to access it, go to www.GetPalliativeCare.org. I recently did a podcast for RealTalkMS on this topic. You can listen at this link.