Multiple sclerosis is a disease that can present differently for those who have it. A MS diagnosis is not a death sentence, because it can be controlled and stay in remission. However, in some cases, worsening symptoms can lead to a number of disabilities. Although the illness is not fatal, complications from MS can contribute to a person’s death.
During the final stages of MS, also known as advanced multiple sclerosis, the patient’s independence may be significantly diminished. The complexity of the individual’s medical issues at this stage requires constant monitoring by a caregiver. It may also be required of the caregiver to provide personal care and assistant with day to day activities they are no longer able to perform.
As previously mentioned, the disease is unpredictable. Not everyone with MS will experience the final stages. However, it is important to have an understanding of what the final stages of multiple sclerosis could look like and to have a full picture of the disease. The best way for those with MS and their loved ones to prepare is to arm themselves with information.
Modern advances in treatment and lifestyle-wellness plans are helping MS patients live longer. Current observation shows that people with MS have a life expectancy about seven years shorter than those without. On rare occasions, MS can lead to a premature death.
Severe disability is a result of MS that affects approximately 1/3 of those living with the disease. Through walking aides like canes or crutches, many retain the ability to move around. MS treatment can help, but in some individuals the disease may continue to progress.
Doctors do what they can to help MS patients, but they cannot predict how MS will advance in one individual. Generally, patients may have long periods exhibiting little to no symptoms, or remission, before relapsing and having another period of illness.
Research shows that certain factors guide the progression of an individual’s illness. The results have shown that people who fare better are often those with:
Samaritan is a member of the National Partnership for Healthcare and Hospice Innovation, a network of not-for-profit hospice and palliative providers across the country. If you know someone outside of our service area who is living with advanced illness and can benefit from hospice or palliative care, please call 1 (844)-GET-NPHI (844-438-6744) for a referral to a not-for-profit provider in your area.
Individuals whose multiple sclerosis may progress more quickly or severely are often those with:
The final stages of Multiple Sclerosis can be challenging as common symptoms become more severe. Should the illness progress to this advanced stage it is important to have the right supports and treatment to reduce the impact on the quality of life.
These common symptoms may develop or worsen during the final stages of MS:
Other issues may also arise during multiple sclerosis’s final stages, including:
Overall, people with MS have more co-existing health conditions — called comorbidities – than are found in the general population. The most common comorbidities among people with MS include high blood pressure, heart disease, diabetes, chronic lung disease, fibromyalgia, depression, anxiety, and bipolar disorder.
These conditions can contribute to a more rapid progression of MS, a reduced quality of life, and a shorter lifespan. Therefore, it’s important to address these comorbidities throughout the course of your illness. Continue seeing your primary care doctor to identify and treat any co-existing conditions. Your neurologist can also help determine whether a problem is caused by your MS or if it’s a separate condition.
A person in the final stages of MS — or any other serious illness — can qualify for hospice care if they have a life expectancy of sixth months or less. Hospice focuses on relieving symptoms and enhancing comfort, so the patient can have the best possible quality of life each day. It provides a wide range of physical, social, emotional and spiritual supports to both patients and families.
People can receive hospice care wherever they are living: at home, in a nursing or assisted living facility, or in the hospital. In addition, some hospice organizations (including Samaritan) operate inpatient hospice centers. These are homelike facilities that provide around-the-clock hospice care to patients with more complex needs.
Care is provided by a team of trained professionals and volunteers, with 24/7 access to caregivers as needed. Most health insurance, including Medicare, Medicaid, and private insurance, cover hospice.