Neurological Disease
What can be expected with end-stage multiple sclerosis?

Multiple sclerosis (MS) is a progressive disease of the nervous system. It can cause a wide variety of symptoms, which may continue or worsen as the disease progresses. The most common symptoms include fatigue, walking difficulties, bowel and bladder disturbances, vision problems, changes in brain function, changes in sexual function, pain and depression or mood swings.

With diseases such as MS, for which there currently is no cure, palliative care expertise can help in all stages of the illness. A palliative approach offers help with symptoms, and help in anticipating and planning for issues and decisions that are likely to come up as the disease progresses. This ensures that a person’s wishes will be met at any stage of the disease. At the end-stage of MS, people commonly face some particular challenges.

Care setting

The choice of where to care for someone with advanced MS depends on each person's needs and available resources. Options may include home, hospice, personal care or nursing home, palliative care unit, or hospital. Where there are community-based resources, then care at home is often preferred by most patients and families. At times, the support needed may require care in a long-term facility. In such settings the person with MS may be far younger than other residents and have greater mental capacities. This can challenge the facility’s program resources, and can affect a person’s quality of life. A palliative care facility or hospice may be preferable at the end of life, if the person meets the criteria for these resources.

Swallowing and eating

Swallowing problems are uncommon in the early stages of MS, but in late stages, as many as one third of people with MS have trouble swallowing. They also may have eating difficulties as a result of hand tremors and muscle spasms. Some people in the late stages of MS show signs of declining mental processes. As a result, they may be unaware of the act of eating or of the need to swallow when being fed. It’s helpful for caregivers, patients and health care providers to talk about how food and fluids will be provided in the advanced stages of illness.

Communication

Speech difficulties may require assessment by a speech-language pathologist (SLP). An SLP also can suggest ways to handle feeding and swallowing problems.

Pain

People with advanced MS may have pain caused by muscle spasms, neuropathic (nerve) pain, and pain caused by immobility. Neuropathic pain and pain from spasms can be challenging to treat. Medications for neuropathic pain include anticonvulsants and antidepressants. If tricyclic antidepressants are used, be aware that urinary retention can be a side effect. Cannabinoids may help relieve neuropathic pain related to MS. Muscle spasms are often treated with muscle relaxants. Physiotherapy to improve range of motion may help with muscle spasms and spasticity.

Final stages

Someone diagnosed with MS often is stable for long periods, can decline, and then stabilize again. Ultimately, the person dies from complications related to the advancing disease. In many diseases of the nervous system deteriorating respiratory function usually brings on the final decline. This may be related to shallow and inefficient breathing, which can lead to complications such as pneumonia. Shortness of breath and respiratory secretions often need to be controlled. Pain medications and sometimes sedatives may help people who are short of breath. Oxygen may be used if it’s available. Medications may help decrease secretions if this becomes a source of discomfort or distress. Certain symptoms may limit the methods available to administer medications. One option is through a feeding tube, if a tube is already in place. Another option is sublingual administration, if swallowing ability and secretions allow it. Subcutaneous administration of medications can also be considered.

Decisions