This is an advanced stage in multiple sclerosis. At this stage, the illness is usually terribly complex and emotional. Patients with end stage MS usually have an Expanded Disability Status Scale (EDSS) score equal to or greater than 8. The mobility of these patients is exceedingly limited. The patient is thus dependent on other people for almost all aspects of care and support.
The symptoms of the disease at this stage are extensive and complex. Typically, the symptoms include extended cognitive impairment, increased spasticity, with extensive swallowing and communication complications. The symptoms are further made worse by associated complications that arise. These complications are particularly pressure sores, contractures and infections.
The complications make end stage Multiple Sclerosis a life threatening illness. In fact the individual with MS may most certainly be in their last year or so of life. It is thus tremendously vital to understand salient wishes that these people may have. Helping these people put their affairs in order and prepare their people for the future will thus support a good death.
There are specific pointers that may indicate that a person has entered the advanced stages of MS and that palliative care should be advised:
1) Problems with swallowing
People with end stage MS will choke and cough when they are eating or drinking. Not only is this dangerous, it may be quite disturbing. These patients thus need to be given the right foods. They also must be prepared properly, and taught the ideal body postures to assume when eating or drinking. Your goal should be to avoid complications such as respiratory infections that may result from food particles aspirated into the lungs. You also want to avoid malnutrition in the person.
Thick fluids and food that has been stewed blended or mashed are the best for people with MS-related swallowing problems. These foods do not need much chewing. This people should be kept away from foods that crumble easily. It is advisable to feed these people smaller, more frequent meals. They should be encouraged to take smaller bites when eating. This minimizes fatigue associated with chewing and swallowing.
In much advanced stages swallowing reflexes may be adversely impaired. In these circumstances, a feeding tube may be required.
2) Recurring infection
Immobilization secondary to MS may lead to the development of pressure sores commonly known as bedsores. Though relatively benign in the initial stages, pressure sores may easily progress to a more serious concern if not treated well. A full body infection, sepsis, is a common eventuality of bedsores when bacteria enters the body via the open sores.
Urinary tract infections (UTIs) and aspiration pneumonia are also frequent life-threatening complications of MS. They tend to be recurrent and unusually severe.
3) Striking Deterioration in physical status and weight loss
Damage to the central nervous system will have a direct effect on the body of the person. Usually starting out as unexplained fatigue, advanced MS will manifest with serious physical deterioration. Immobility will develop which may further complicate the disease by development of Osteoporosis. The loss of bone density comes about due to reduced mobility and weight-bearing exercise
4) Aspiration pneumonia
Advanced MS presents with marked dysphagia. The swallowing problems may cause food or liquid to be aspirated (deposited) in the lungs. The body immune system is activated resulting in an inflammatory response. The inflammation that results may be accompanied by fluid accumulation which leads to pneumonia.
5) Severe cognitive difficulties
Cognitive difficulties that come with end stage MS involve massive memory lapses, serious attention deficits, information processing is compromised extensively, and the person may have serious word-finding difficulties.
6) Significant complex symptoms
Physiological and emotional complications of MS may further be compounded with other physical symptoms. This makes the disease even more complicated.
Inevitably care and support of MS patients places a mountainous burden on the person’s family. However the patient deserves the best available care and treatment.