Understanding Late-Stage MS

Multiple sclerosis, commonly referred to as MS, is a progressive disease of the nervous system. It disrupts the flow of information within the brain and between the brain and other parts of the body. The cause of multiple sclerosis is still unknown and we do not yet have a cure.

The symptoms, progression, and severity of MS can vary from person to person, but most individuals are diagnosed between the ages of 20 and 50 and they often live another 25-35 years after their diagnosis. As the disease progresses and symptoms become more frequent and severe, palliative care experts can help with symptom management and planning for the future to ensure their patient’s wishes are met. When a patient reaches end-stage MS, hospice care is an important tool in managing pain and other symptoms.

End-Stage MS Symptoms

When a patient with multiple sclerosis begins to experience more pronounced complications, this is considered end-stage MS. Some of the end-stage MS symptoms patients may experience include:

• Limited Mobility – Patient may no longer be able to perform daily activities without assistance. In most cases, they will be restricted to a bed or a chair. They may no longer be able to assist in grooming or other self-care.
• Difficulty breathing – Weakened respiratory muscles and increased respiratory secretions make it difficult for patients to breathe properly.
• Trouble eating – Patients with MS may experience a variety of challenges that interfere with nutrition. These include tremors and muscle spasms that make holding utensils difficult. They may also have trouble physically swallowing food as muscles weaken. Patients experiencing cognitive decline may also forget to eat or how to swallow even if someone else is feeding them.
• Difficulty Communicating – Patients may experience trouble forming words and verbalizing their needs.
• Neurological decline – Changes in brain function and mental status changes become more pronounced. Some patients also experience mood swings and depression.
• Pain – Muscle spasms, nerve pain, and pressure sores from immobility can cause pain that is difficult to manage without support from hospice care experts trained in managing pain at end of life.
• Skin care complications – Nutritional compromise and limited mobility lead to skin breakdown, muscle atrophy, and severe decubitus ulcers.

If a patient is experiencing any of the above symptoms, they may be eligible for hospice care. A hospice evaluation should be scheduled as soon as possible to ensure the patient receives the support they need to maintain the highest possible quality of life.

How does hospice help end-stage MS patients?

When a patient is admitted to hospice, their hospice care team will begin visiting to assist caregivers in meeting the patient’s physical, emotional, and spiritual needs.

All medications, medical supplies, and medical equipment related to the patient’s MS diagnosis will be provided at no cost to the patient or family. These can include hospital beds, geriatric chairs, and positioning tools to help increase the patient’s comfort.

The hospice nursing team will work with physicians to address any pain the patient is experiencing and to help control other end-stage MS symptoms. In the meantime, hospice aides will assist with bathing, grooming, and other personal care needs. With end-stage MS patients, this means taking particular care to address muscle atrophy, decubitus ulcers, and skin breakdowns.

The emotional support team of social workers, chaplains, bereavement counselors, and volunteers will also visit to address the patient’s emotional and spiritual needs. They will also work with the family or facility staff to ensure the patient’s end-of-life wishes are being met.

Crossroads Hospice & Palliative Care provides support to terminally ill patients in their homes, assisted living facilities, and nursing homes. To learn more about hospice eligibility for end-stage MS patients, please call 1-888-564-3405. 

If you found this information helpful, please share it with your network and community.
Copyright © 2019 Crossroads Hospice & Palliative Care. All rights reserved.