Patients with advanced MS accumulate severe disability and often become dependent upon others for help with activities of daily living (ADL), such as feeding themselves, bathing, dressing, grooming, or homemaking. The final stage, or end stage MS, arises when severe disability and complications of MS create serious threats to a person’s life. When family members and caregivers ask questions regarding “end stage” MS, I presume (perhaps incorrectly) that they are really asking palliative or end-of-life questions.
[Edited to add: After a brief discussion with a friend whose wife has had MS for 27 years and who has a disability score of EDSS 8.5, I want to emphasize that a person can live with the more advanced stages of MS for many, many years. As Patrick said, "'End stage' sounds final but actually it can be the longest stage."]
The National MS Society has published a number of booklets for patients, family members, and medical professionals regarding more advanced MS and end of life considerations. For more information, please read:
- Caring for Loved Ones with Advanced MS: A Guide for Families (pdf) by Dorothy E. Northrop and Debra Frankel
- Opening Doors: The Palliative Care Continuum in Multiple Sclerosis (pdf) by Marion Brandis, Nancy Clayton Reitman, David Gruenewald, and Maura Del Bene
- Talking about Palliative Care, Hospice, and Dying (pdf) by Marion Brandis and Nancy Clayton Reitman
What are the phases of MS?
Beyond the scope of the present discussion, the phases of MS may also be described in terms of radiological findings. Early MS is characterized more by inflammation rather than later MS during which brain atrophy takes a prominent role. Changes in the immune system also occur over time as MS evolves. Researchers are also collecting evidence that disability progression in MS is a two-phase process (Leray 2010).
With the various ways in which simple words - stage, phase, type - are used in discussions surrounding MS, no wonder there is confusion when a doctor might say that your mother/sister/father/child has reached “stage 4” MS, for example. Anytime questions arise regarding aspects of your disease or that of your loved one, please ask the treating neurologist to explain the meaning and implication of what he/she says. Each person’s experience with MS is unique and specific needs may differ greatly from generalities.
Brandis M, Reitman NC. Talking about Palliative Care, Hospice, and Dying. © 2009 National Multiple Sclerosis Society
Brandis M, Reitman NC, Gruenewald D, Del Bene M. Opening Doors: The Palliative Care Continuum in Multiple Sclerosis. © 2008 National Multiple Sclerosis Society
Canadian Virtual Hospice. What can be expected with end-stage multiple sclerosis? Accessed online July 29, 2012.
Inglese M. Multiple Sclerosis: New Insights and Trends. AJNR May 2006; 27:954-957.