Neurological disorders are among the leading causes of morbidity and death worldwide. While strokes is the 3rd leading cause of death, after heart disease and cancer, in the United States, other neurological disease, such as Parkinson’s disease, amyotrophic lateral sclerosis 肌萎缩性侧索硬化 (ALS), and multiple sclerosis 多发性硬化症 (MS), have a more chronic course that leads to protracted disability, morbidity, and ultimately, death.
End-stage disease progression of neurologic disorders varies but there are some commonalities:
- Progressive weakness / disability:
- Ambulatory patients may progress to wheelchair bound or bedridden.
- Patients may be unable to manage personal care or any ADLs, such as eating, toileting, and bathing, without assistance.
- While range-of -motion and other exercises may help, the changes are usually not reversible, so the caregiver may need assistance to provide care.
- Speech impairment:
- The patient’s speech may be difficult to understand or the patient may lose the ability to communicate verbally. Assistive devices, such as computerized systems, may help and the patient may be able to communicate through picture or letter boards.
- The patient may choke easily and eventually lose the ability to swallow.
- Initially, the dysphagia may be controlled through changes in diet (soft or puréed foods) but eventually the patient may need a feeding tube to maintain nutrition and hydration.
- Respiratory distress: Positioning and oxygen administration may relieve respiratory distress, but those with severe impairment may require intubation and ventilation.
*** Almost all patients with chronic neurological disorders have psycho behavioral symptoms or show signs of depression. Screen for these disorders frequently and treat proactively.***
Yennurajalingam, S., & Bruera, E. (2016). Oxford American Handbook of Hospice and Palliative Medicine and Supportive Care (2nd. Ed.)