For years, we watched some clients quietly reach a stage of ALS that had no name and no roadmap. End of Communication is an emotionally heavy topic, and it won’t apply for every person with ALS. But for those who do experience it, there were no dedicated resources—until now. This is the story of how we finally defined this stage, together.

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The Background

At Bridging Voice, we have the privilege of walking alongside people living with ALS for their entire journey, often for a very long time. Over the years, we began to notice a pattern we couldn’t ignore: certain clients who, despite every tool, customization, and innovation we had to offer, slowly lost the ability to reliably communicate. Even with multiple team members on a case and input from trusted partners, we ultimately reached a point where we could no longer recover reliable communication.

One story captures what this often looks like: We worked closely with a client who had communicated fully and independently on their eye gaze device for over two years. But over time, things began to shift. Medical events affected oxygen levels, dry eyes impacted eye tracking accuracy, pain medications affected alertness and focus. We continued building customized keyboards, introducing yes/no communication systems, and doing everything we could to find alternate ways to keep them communicating. Some days it worked, some days it didn’t. Slowly, we reached a point where we had to acknowledge that reliable communication was no longer possible. It was a conversation none of us wanted to have.

Faced with this reality for a number of clients who followed that same path, our team kept coming back to two questions: What could we have done to prepare these people, their families, and ourselves for this moment? And what would it have meant to have their wishes and preferences captured before we ever got here?

We started to think of this phase as “End of Communication.” It was a stage that some of our clients were quietly reaching that we just didn’t have language for. It was a period when communication started to become unreliable and all available tools had been used or tried, but stopped working. It was a period where we realized the focus of our support needed to shift in a fundamental way. It wasn’t End of Life or a device or training problem—it was something different that we realized had no name, no definition, and no dedicated resources.

Seeking Community Input

Rather than defining this in isolation, we brought this topic to our incredible community. This past spring, we hosted a roundtable discussion with some of our most trusted partners and fellow practitioners to think this through and name this gray area. We had all experienced this difficult reality and all found the same frustrating lack of resources to help us navigate it.

After our roundtable, we held an open training session for people living with ALS, caregivers, and allied professionals. We weren’t there to present answers, because we genuinely didn’t have them yet. We wanted to hear the perspectives of the people living this moment, of the family members trying to help, and of the clinicians sitting across from their patients and not quite knowing what to say.

We had a record-breaking 300 people register for this session. People showed up and shared openly. They told us what was missing, what they wished someone had told them earlier, and what a resource on this topic would need to say and do to actually be useful. We took all this feedback to heart and went to work.

Two New Resources—and a Newly Defined Stage of ALS

Thanks to our community’s input, we defined “End of Communication” as the period of gradual transition when a person begins to lose the ability to reliably express themselves, and when the focus of communication support shifts from finding new tools to supporting methods of connection beyond words.

We then developed two new resources that we think of as the beginning of a conversation that’s long overdue. We recognize that this is an emotionally heavy topic. If this feels like too much right now, that’s okay. These resources will be here when you need them:

End of Communication: The Transition to Connection Beyond Words is a two-page overview for people living with ALS, caregivers, and clinicians. It defines End of Communication, separates it from related but distinct concepts like loss of speech and end of life, outlines signs to look for, and walks through what to try before concluding someone has reached this stage. We wanted it to feel honest and approachable, not clinical or alarming.

Your Voice, Your Way: A Planning Guide is a personal worksheet meant to be filled out while communication is still reliable. It walks through how someone currently communicates, what they most need to be able to express, their yes and no signals, and how they want to be cared for and comforted when words are no longer available. There are no right answers, and it can be updated as things change.

We want to be clear that this stage is not a certainty. Not every person with ALS will experience End of Communication. But we believe in preparing for the possibility while communication is still reliable — not because it will happen, but so that if it does, you and the people who love you are ready.

What’s Next

We think of these materials as the first step toward filling a gap that many of us in the ALS community have felt. But this topic deserves more attention, research, and community input, and we’re committed to being part of that as it grows.

We ask for your email when accessing these resources so that we can follow up, gather feedback, and continue improving these resources over time. They are and will always be completely free of charge. 

To everyone who joined our sessions this spring: thank you. You showed up for a difficult conversation, and these resources exist because of what you shared. We hope they’re useful and that you’ll pass them along to families, to support groups, to clinicians, and to anyone else who might need them. 

We’re grateful, as always, to learn from and work alongside this community that never stops showing up.

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End of Communication resources developed by the Bridging Voice clinical team in collaboration with the ALS community