Terminal Agitation

Recently I took care of a hospice patient with end-of-life delirium also known as terminal agitation, which comes on suddenly and can manifest in a variety of ways: pacing, hostility, combativeness, confusion, and/or restlessness. For this gentleman, he kept trying to get out of bed in spite of his weakness and kept incoherently hollering at us, desperately trying to get our attention. 

For patients, delirium is distressing. For families, it's agonizing.

To me, it feels like there is this “hell no, I am not ready to go” component to the agitation. Just one week earlier, this patient was independently managing his medications and wound care, and he told me he wanted to join a church community because he missed fellowship. He also could not wait to get social security (which was four years away). 

Clearly, last week, my patient had no intention of dying anytime soon. 

But suddenly he was too weak to get out of bed, could not make his needs known, and would likely die within the next few days. 

The dear CNA said, “It’s okay, Bob*, you have trained us well on how to take care of your dressings and what medications work for you. We are going to help you every step of the way and keep you comfortable. Let us take care of you now.” Bob’s face softened and his body relaxed a bit. He could still understand us.

He was in this liminal space, desperately wanting to live in spite of his dying body.

The CNA knew what he needed most in that moment: reassurance, understanding, and presence. So wise. 

He still had some agitation and restlessness, and we continued to give medications for his delirium. We also continued to tell him he was safe and that we would take care of him. He died rather peacefully two days later. 

This article explains many of the root causes of terminal restlessness, and I’ve also written a blog post explaining confusion and delirium at the end of life and offering suggestions on how to alleviate this distressing symptom.

*not actually Bob