Why do we call it "actively dying?"

I'd always heard the phrase actively dying and never thought much of it until I started seeing a lot of people die in hospice. I'd seen plenty of death in acute care, but following the process through provides an entirely different perspective. In the hospital, particularly in the ER, I saw the last bit of the process, and sometimes it was as fast as a few minutes (think aortic dissection). It's not that simple.

The first thing I learned was that alive/dead is not the easy dichotomy that you would think it is. Either you're dead or not. But I go uncommonly religious and tell people that the Bible says it's "the hour of our death" for a reason. In the ER, I saw one person during my entire time there be pronounced and then sit up and pull her tube out. Now I know to give it a while before pronouncing.

The next thing, and the topic of this post, is that I started to learn about the process itself. Dying, I thought, is a passive thing; it's something that happens to you. Not at all so. It takes a lot of energy (from both the dying person and her loved ones). Anyone who has ever sat vigil at the bedside of a dying person will know what I mean.

It happened to me with my dad. We sat and waited and found ourselves wishing he would just pass because it looked like such a struggle for him. We were exhausted. We hated ourselves for wishing he would go, for any reason. We told him it was okay to die. We told him we loved him a million times. Why was it taking so long? Was he being stubborn? I didn't know. I don't think we slept for days.

He, like many of the moribund, unbeknownst to me at that time, was actively dying, and that's normal.

What's so active about it? I wish I could tell you what was going on inside the consciousness of the dying person, but by this stage, usually the last 72 hours of life, nobody knows. I do know that many of my patients while still responsive often say things like, "why am I still here? Why can't I just go?" A few have outright shored themselves up and decided to pass, right then, and couldn't do it simply through power of will (seriously, "OK, I'm going to die now," with eyes squeezed shut).

Is there an internal debate? Is it simply physiological? Is it a necessary biological process like birth, in reverse? I wish I knew.

The body is busy during the actively dying phase. I think of it like a powerful jet engine going through the postflight checklist, system by system. Things stop working when systems shut down. Muscles stop: first the big ones that move arms and legs and then the little involuntary ones that move food and water along. So the person stays in bed and does not want to eat or drink (please don't water-log a dying person...they don't appreciate it).

Inevitably in this process, then, dehydration sets in. Vital signs get weird: typically, heart rate goes up, temperature goes up, and blood pressure goes down, just as they would with regular dehydration. Think of a radiator without as much fluid going through it day by day. It heats up. Most often actively dying people are not sick from an infectious process that can be treated to reverse the process. They're just working on dying.

All those fancy respiratory detectors and regulators we learned about in physiology seem unsure what to do with this new information, so their little dials spin and breathing changes. Spin, spin: breathe really fast. No spin: stop breathing. For a while the systems kick in from time to time and breathing begins again. Eventually, they don't.

Breathing also requires the help of some pretty big muscles, notably the diaphragm, and as I've mentioned those are shutting down. Breathing begins to therefore look labored. I don't know what this experience is like from the inside. People don't look bothered by it (the dying people, not the onlookers), and we give medications for air hunger just in case they are.

Finally, the heart, also a muscle, is winding down before it stops. Heartbeats become fast, thready, irregular, slow, hard to hear or palpate. What with all these circulatory shenanigans involving blood pressure and heart rate, the little bitty blood vessels on the periphery close down because the body shunts blood centrally. This, along with decreased efficacy of breathing, leads to cold, dark hands and feet (and, sometimes, nose) and eventually mottling, that distinctive pattern that appears on the feet, knees, dependent areas, and eventually anywhere.

Then there is the issue of swallowing, that hugely complicated and coordinated effort that we all do without any conscious thought, if we are lucky. Remember, muscles aren't working. When that happens, secretions pool in the back of the throat, causing the notorious death rattle. Sometimes we give atropine or scopalomine for these secretion noises, but I don't like it because we are just dehydrating the person even more.

My point with this incredibly unscientific recounting of dying is that there is a lot going on here. People don't just lie there and die; they are going through quite a lot physiologically. I often think of it as reverse labor. Everyone has a different experience of it, and the body has its own timetable.

Also, I should say that I believe these natural signs of the progression of death should not be personalized, meaning I believe that the apparent labored breathing, fever, and so on are typically not as bothersome to the dying person as they are to those observing, particularly when the person is being medicated. I'm all for medicating people if there is any sign at all that they are suffering.

Finally, part of the active dying process really seems to be mental or spiritual. Those who see a lot of death say things like, "what is he waiting on?" and then postulate things such as (a) waiting for a family member to come, (b) waiting for a family member to go, (c) waiting for everyone to gather around, and (d) waiting for everyone to leave. It sounded bizarre to me at first, but now I do it to because I've seen so many people apparently duking it out until something happens: a visit. A holiday. An anniversary. Some people will tough out a death vigil for days, and then when the person sitting vigil finally falls asleep they go ahead and die.

Again: there's a lot going on there. And that is why we call it active dying.