06/12/2026
We had a client with ALS. When we started working with her, she was facing a decision whether she could stay at home or if she had to go to a facility. She wanted to stay at home, so we did.
ALS is a degenerative disease, which means it'll get worse over time. At first, it was pretty slow, and I'd see her once a week. As time progressed, the disease really started to get on top of her.
Early on, we started talking about palliative care. Palliative care focuses on symptom management and quality of life, rather than extending life or intensively managing problems. So you're starting to focus on the person more than managing the disease process.
Her physician practiced in St. Louis, so I would take her up to see her doctors on a regular basis. One day, we were in a physician's office, and she brought up palliative sedation.
Since the client had a diagnosis of a certain level of prognosis, it meant we knew she was going to die. It's a matter of when at that point. Because of this, she was eligible for this type of care.
When the time was right, we brought her two children in, her best friend, and her brother. They all came in for this pilot of sedation, and over five days of us giving her comfort medications, we helped her pass peacefully.
We did it on her terms, in her home. Navigate Wellness had shifts, but her friends and family had shifts. We talked about her as a little child with her brother. We talked about her as a mother with her children, and her best friend was there as well.
They're all Jewish, and I learned a lot about the religious part of the experience.
The reason she wanted to stay at home in the first place? She liked to get up at 1am to make chocolate chip cookies. There wasn't going to be anybody who was going to let her do that. I know that sounds like I'm being funny, but she wanted to be able to manage her joys on her terms.
She didn't have many options because of her diagnosis, but within that diagnosis, she wanted a plan that gave her the most control over the end of her life and how she experienced that. And I think we were the team to do that for her. And I'm very proud of what we did for this client.
-Ryan
