What is end stage MS? How does it differ from advanced MS? What symptoms and complications can lead to end stage MS? How can advance care planning help ensure your wishes are met as your condition progresses?

Understanding End Stage MS

While it is rare for someone to die directly from Multiple Sclerosis (MS) itself, the severe disabilities that can result from the progression of the disease can make an individual more vulnerable to life-threatening complications. This critical stage is known as “end stage MS”. Unlike advanced MS, where treatment aims to help improve one’s medical condition, the focus in end stage MS shifts to providing respectful, dignified, and comfortable care through the end of life.

Symptoms and Complications of End Stage MS

Some of the key symptoms and complications that can indicate the onset of end stage MS include:

• Severe bladder and/or bowel problems leading to recurrent infections
• Increased susceptibility to respiratory infections, such as pneumonia
• Swallowing difficulties that can cause choking or aspiration pneumonia
• Feeding challenges that may require a feeding tube or result in severe weight loss
• Weakening of the respiratory muscles, making breathing difficult
• Loss of speech or ability to communicate
• Pressure sores due to immobility, risking infection
• Increased risk of blood clots from lack of mobility
• Elevated pain levels
• Mental confusion or disorientation

These symptoms can lead to frequent emergency hospital admissions and put the individual at risk of developing sepsis, a potentially life-threatening condition.

Advance Care Planning for End Stage MS

What is advance care planning, and how can it help those with end stage MS? Advance care planning is a process that allows you to think about and communicate your preferences for future care, including end-of-life decisions. This is particularly important as you near the end of life with MS, as it helps ensure your wishes are known and respected by your loved ones and healthcare providers.

Key Components of Advance Care Planning

Advance care planning can address a variety of important considerations, such as:

• Identifying who you want to be consulted about your care and support you
• Specifying your preferred care setting, whether that’s a hospital, hospice, or at home
• Outlining your desired location for end-of-life care and funeral plans
• Communicating any treatments you would or would not want to receive

By having these discussions and documenting your wishes, you can help maintain control over your life and ensure your voice is heard, even if you become unable to make decisions for yourself.

Resources for Advance Care Planning

If you’re interested in learning more about advance care planning for end stage MS, the MS Trust has a helpful guide called “Thinking Ahead”. The Dying Matters website also offers resources and support for discussing end-of-life wishes with loved ones. Remember, these conversations can be emotionally challenging, but they are ultimately a way to take control and ensure your preferences are respected as your condition progresses.

The Importance of Palliative Care

As individuals with end stage MS approach the final stages of their lives, it may be appropriate for them to access palliative care services. Palliative care focuses on providing relief from the symptoms and stress of a serious illness, with the goal of improving quality of life for both the patient and their family. This type of care can help manage pain, address other distressing symptoms, and provide emotional and spiritual support during this difficult time.

Conclusion

The transition to end stage MS can be a complex and emotional experience, but with advance care planning and access to palliative care services, individuals can help ensure their wishes are respected and that they receive the compassionate, dignified care they deserve. By understanding the symptoms and complications associated with end stage MS, as well as the resources available, those affected can take steps to maintain control and find comfort as they navigate the final stages of this challenging condition.