When we first started writing the “Unspeakable Bits” blog, I resolved not to candy-coat the difficult parts of living with multiple sclerosis. I’d always intended to open the conversation about end-of-life and MS. I decided to broach the subject now, in the wake of the recent passing of our fellow “MSketeer,” Annette Funicello.
Social media sites erupted with kind words and remembrances of the actress. Soon, however, confusion began to set in as Disney’s press release attributed her death to “complications from multiple sclerosis.” When a Canadian television video of her last days was broadcast as a remembrance, confusion became fear and concern.
My greatest fear when the dark days have me thinking about MS is that it might get “that bad,” but I must admit that I didn’t really know what that means. What does “advanced MS” look like? How does MS get to “end stage”? What are these “complications of MS”?
As I stated in my first Unspeakable Bits, I have always felt that information is the counter to fear and that with knowledge – even knowledge of the nasty bits – I can make decisions for myself and my family that are based on sound reasoning. I am only qualified to speak from my personal knowledge and perspective when it comes to this sensitive subject. The Society will bring experts and additional information to address other aspects of the conversation on the MS Connection blog, much in the same way we covered the controversial subject of medical marijuana last month, to help shed light on this dark corner of MS.
It’s important to understand that there are treatments, exercises, medications and devices to help us manage the most challenging MS symptoms – even those that can eventually contribute to death. Being that death is something all of us must face in our own time, it may be helpful to understand how MS might be a factor. That level of complication is relatively rare, but it does happen. Just as I respect the feelings and experiences of those with the mildest forms of our disease, I also feel it is important to recognize and respect the feelings and experiences of those with aggressive forms of MS that can hasten death.
So, what might be some of the “complications” of MS that can cause death?
- Pulmonary involvement
- Severe infections, sepsis
- Aspiration pneumonia
A Society clinical bulletin on Pulmonary Function and Rehabilitation states that “Just as muscular weakness in the limbs occurs early in the disease and increases as the disease progresses, the same progressive weakening occurs in the ventilatory muscles. Ultimately, respiratory complications are considered the major cause of morbidity and mortality in individuals with advanced MS.”
One of the hazards of advanced immobility due to MS can be pressure sores (commonly known as “bedsores”). Pressure sores begin as relatively benign problem, but if left untreated can quickly progress to a more serious concern (including sepsis – basically a full-body infection caused, in the case of pressure sores, by bacteria entering via the open wounds). Many factors can contribute to pressure sores; they include immobility or inactivity, decreased sensation, bowel or bladder incontinence and poor nutrition.
Other common infections which can lead to life-threatening consequences include recurrent and severe urinary tract infections (UTIs) and aspiration pneumonia.
Dysphagia – or swallowing problems – can cause food or liquid to be deposited into the lungs. The body sees this foreign matter as an intruder and sends its defenses to work. The resulting inflammation and fluid accumulation can lead to pneumonia.
The reported rates of a person with MS taking their own life (or being assisted in doing so) range from just over 6% to nearly 15%. (Editor’s note: these rates are high compared to the general population, and result primarily from the high rate of undiagnosed and undertreated depression in MS. Depression, which is significantly more common in MS than in the general population or other chronic illnesses, is treatable. People who think they may be depressed should contact their healthcare providers as soon as possible.)
I found a wealth of information on advanced MS, but it took some digging. One resource I’d recommend to all of you is a publication called Caring for Loved Ones with Advanced MS: A Guide for Families. My wife and I have read through it several times and now feel better armed to do the advanced work which can be done to 1) understand palliative care, 2) addressadvanced medical directives and end-of-life wishes well in advance of needing them and 3) mitigate symptoms of depression.
Fear is what drove me to write this blog entry. I feel more at ease knowing just what my enemy might look like and somehow less fearful. I hope the same for you. Now, I’m going to go throw the ball to my dog because all this studying has reminded me that life with MS really is all about the living part.
Wishing you and your family the best of health.