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What is Terminal Agitation?

Two hundred years ago, people facing death were not given a whole lot of options about how their last few days would go. Maybe a little laudanum (or brandy) for pain, but mostly, you faced death as it came to you.

These days many, if not most, people in the developed world are given a lot of medication as they approach death. This is primarily to control pain, particularly in cancer patients, but there's another part of the story: to control terminal agitation (terminal restlessness, terminal delirium) which can occur often as a result of end-stage organ failure and other irreversible factors.

Terminal agitation isn't just a physical condition, or mostly not: it's often primarily emotional or spiritual, i.e. existential. It can manifest as extreme restlessness, sweating, night terrors, and extreme anguish even in people who have strong religious convictions about the afterlife. Not everyone who is about to die gets it, but it's estimated to affect over 80% of dying patients, at least in the developed world. Needless to say, it's very distressing for the person dying, their caregivers, and especially for their loved ones. Hence the heavy reliance on narcotic medications: avoid the anguish of it all. However, at the same time this removes a person's ability to face death consciously, even if this is something they might want to do, even through the existential dread.

Research has been done on a different approach, though -- using (currently illegal or highly controlled) hallucinogenic substances like LSD, ketamine, psilocybin (mushrooms) or MDMA (ecstasy). Someone who has tried ketamine told me the experience was like floating above their body, able to see it but not concerned. Since this approximates how most people want to experience death, it seems promising. The medical literature seems to point to the need for much more research on this topic. It’s difficult, of course, to measure the experience of someone else who is experiencing a condition induced by hallucinogens.

What does seem to be true, though, is that preparing for death -- how you want your last days and hours to go -- is really helpful. Knowing that terminal agitation might be part of the picture might be helpful for all concerned to help in this preparation. Let us know how we here at VEOLI can assist with visualizing your, or a loved one’s, final goodbye.

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