Samaritan honors nurse-hospice patients. Nurses have dedicated their lives to caring for others. At the end…
Multiple sclerosis is an unpredictable disease that varies from person to person. In many cases, MS can remain controlled or stay in remission. In others, symptoms can worsen and cause various disabilities. While the illness is not typically fatal, complications from MS can contribute to a person’s death.
However, the right care can help patients and families cope with multiple sclerosis’s final stages, and have the best possible quality of life during this difficult time.
A person in the final stages of MS – also called advanced multiple sclerosis – is dependent on others for their personal care and daily activities. The person has complex medical issues, cannot be left alone for very long, and is rarely able to go out.
This advanced condition is not common, but it’s important that people with MS and their loved ones understand and prepare for it, in case these needs arise.
People with MS are living longer than in the past, which is likely due to improved treatments and healthy lifestyle changes by patients. On average, people with MS live about seven years less than people without MS. In rare cases, MS can rapidly become fatal.
Multiple sclerosis (MS) is a disease of the central nervous system. It disrupts communication between the brain and other body parts, causing a wide range of symptoms – from extreme fatigue and numbness to impaired vision and paralysis.
The effects of MS vary from patient to patient and can change over time. Symptoms can get better, worse, or even disappear.
Medical advances are helping to reduce the impact of MS and improve patients’ lives.
Most people with MS do not become severely disabled. Two-thirds of patients remain able to walk, though many will need an aid, such as a cane or crutches. Treatments can help manage MS, but in some cases the disease will worsen anyway — regardless of what the patient or their physicians do.
Doctors cannot predict how MS will advance in a given person. In some cases, for instance, patients have long periods of remission – with few or no symptoms — between bouts of illness (known as relapses, attacks, or exacerbations).
Certain factors may play a role in how a person’s illness progresses, according to research. For instance, people who fare better are often those with:
People whose disease may progress more quickly or severely are often those with:
If your illness progresses to an advanced stage, you may experience more severe challenges. The good news is that the right supports and treatments can help stave off these problems or reduce their impact.
If your symptoms interfere with your regular activities, a variety of technologies, devices, and home modifications can increase your autonomy. Complex rehabilitation technology (CRT), for example, is considered medically necessary, and can be covered by some health insurance. This can include customized wheelchairs, seat cushions, positioning systems, and head and trunk support systems. Rehabilitation therapists can advise you and your family in this area.
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:
Did you know?
More than 2.3 million people worldwide are affected by MS. MS is not contagious. Genetic factors may play a role in who develops the disease.
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 the person’s 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.
Many people with MS live for years with significant health challenges, and there is no exact way to determine a person’s prognosis. Nevertheless, certain issues can indicate that it’s time to seek hospice support, including:
If you live in South Jersey and have questions about the final stages of multiple sclerosis or hospice care for your loved one, please call Samaritan at (800) 229-8183.