What living with a chronic illness has taught me about being with people at the end of life

(Image from Be Stigma Free )

I don’t think I’ve written about the fact that I have a traumatic brain injury, but I do. In my first semester of grad school, getting my degree in neuroscience, I was rear-ended in while stopped in traffic by a vehicle going somewhere between 50-70mph. Living with a TBI has helped me be better about being with people at the end of life. Because my illness is invisible I realize there are many symptoms people experience that are hard to explain, interpret, and/or predict due to the changes in brain function as people approach death.

Sensory input even in the form of loving touch can be incredibly overwhelming, painful, and overstimulating. If you are working with someone who can still communicate always ask before touching them (you should be asking because you should also never touch someone without their consent, but I digress). Ask every time because it may change. Even if the person can’t communicate verbally it is important to ask and look for body signals for clues as to whether or not touch is welcome or soothing. It can be both difficult for both patient and loved ones/caregivers to not use touch, but there are other ways to make someone feel loved and safe.

Sensory input goes beyond touch as well- auditory, olfactory, and visual stimulation can also be unpleasant. Again be sure to let your patient be your guide- they will either tell you or show you the safest and gentlest ways to interact with them. Understand this and help your patient and their families understand that there is nothing to be ashamed of in accommodating their stimulation responses.

Communication is often difficult. Finding the right mode of communication- speaking, writing, non-verbal communication- is essential for being a good end of life doula. Most of all, remember that patience is a crucial part of communication. Speak slowly, clearly, and directly. Don’t rush or mumble. Don’t shout. Watch to see how what you are saying is being received. Let your patient have the time they need to answer you and make a real effort to ensure you understand what they have said. (See my post on communicating with dementia patients for other tips on communicating.) Being heard is something that makes us feel like humans with value.

Never make assumptions. Both the most obvious and easiest to forget. Things that people may have relied on in the past to bring comfort may now serve as painful reminders of things they can no longer do or are leaving behind. Something that wasn’t an issue yesterday may be a major issue today. A big part of the mantra “meet your patient where they are” is allowing your patient to teach you about where they are in each moment.

Be not just willing, but truly able to settle in and be present with your patient. This ability to be fully present and aware of your patient and their needs is what will allow you to meet them in the most supportive and loving manner for them at that time. And that makes all the difference.




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