DON’T THINK OF IT AS DYING, said Death. JUST THINK OF IT AS LEAVING EARLY TO AVOID THE RUSH.
«Good Omens» by Terry Pratchett & Neil Gaiman
Two days before his 76th birthday, my father died due to a second, this time much more serious, stroke. Around six years after his first stroke (he had it around a week or so after his 70th birthday, and yeah, bad timing is an old friend who just doesn’t want to leave).
As unfortunate events go, given it would end badly, it ended in the best way possible (of the bad options, that is). The artificial respiration was stopped only after we arrived. My mother and I were with him when he did get the sedative to fall asleep. And when he died.
In essence: He did not die alone, which was very important to me.
[Short update after a year of thinking about his death. Yup. This is something that I would — likely — never would have forgiven myself … if I were not with him by his side. My father was … my father, but he was one of the few people I did respect. I … really, really wished I would have visited him a bit more before he died. But at least he did not die alone. There is that, and that is something that can’t be taken from me. Even if it still hurts like hell.]
First off, as bad situations go, the staff at the ICU did act … extremely well. We had our privacy. There were curtains, shielding us from others. Yet we still had some distraction if we wanted to listen to them (focus upon them) — and even some strangely … comforting moments of humor — when listening to the other patients and the nurses. We also had a huge window, in contrast to most of the other patients. And as written, the staff were … exemplary? They knew what would happen and they did strike the perfect balance of letting us (and my father) in peace yet making sure we had everything we needed. Not to mention to let us visit him, and stay with him, despite a general COVID-19-lockdown of the hospital itself (which prevented us from visiting him the whole week before). (And yeah, when there is a lockdown, and are suddenly allowed to visit the person, there is little need to say anything else.)
But as a consequence, I had to spend 18+ hours in an ICU.
Prior to this … experience, I would have seen technology in ICUs differently. I would have thought that a monitor, displaying the vitals of a relative, would be a bad idea. Annoying. Cruel. Distracting. And yeah, screens still distract. Even in such a setting. But it was very helpful to see his heart rate, his SPO2 rate, his blood pressure, his respiratory frequency, and his temperature. It did tell (at least me) when something major happened. Something I would not have seen when watching him after the stroke.
Especially the temperature. It did increase around 0.1 degree every 16-18 minutes or so. Hello pattern recognition, and tendency to want to get reliable data (I can’t stop being who I am, and in that situation, the stopwatch was the logical choice):
And it was pretty clear that — if it continues to rise this way — when he would die. 42 might be the answer to everything, but it’s also a very bad temperature to have.
It did not end this way, he did die with a temperature of 41.3°C. And the last few 0.1°C increases were spaced out a bit more. But after around 18 hours of waiting, it ended quickly. And — thankfully — very peacefully.
But back to the technology, to the screen. Yeah, it was very helpful. It was — besides my father himself — something to focus upon. Something that did tell us what was happening, but we could not see ourselves. And yeah, YMMV, but for me, it was very, very helpful. On the level of “keeping me sane” kind of helpful.
And yeah, previously, I would have seen it as distraction.
I only would have liked to have some explanation to the values, beside the information I could deduce myself. But that’s about it for what the hospital can do itself.
As for dying, even before watching Terry Pratchett’s lecture on “Shaking Hands With Death“, I was a proponent of medically assisted suicide. Yeah, under strict controls. But I believe in freedom. And that includes the freedom to die. Sometimes it is better to let go. And that includes people whose body … fights until the last moment. Even when the brain is gone. And relatives should not watch two forces combating each other. Best I can put it is by referring to Doctor Who (when it still had quality standards based on merit, not on ideology):
Rory [to the Doctor, as he prepares to open the TARDIS door]: «I’m sorry. I can’t do this.»
Older Amy: «If you love me, don’t let me in. Open that door, I will — I’ll come in. I don’t want to die. I won’t bow out bravely — I’ll be kicking, screaming, fighting — to the end.»
Rory: «Amy, I love you.»
Older Amy: «I love you, too. Don’t let me in. Tell Amy, your Amy: I’m giving her the days — the days with you, the days to come, the days I can’t have. Take them, please. I’m giving my days.»
Doctor Who: «The Girl Who Waited»
And yeah, as an old posting about suicide put it, the human body sometimes is very resilient. No matter what the mind, or brain, wants, the body itself wants to live. And I seriously question whether relatives should watch it, especially when the morphine injection is just an arms length away and you have watched how the nurse did increase the dosage.
That was a long night watching my father focus on exhaling just so he could inhale. And the way to end his suffering just a few short actions away. Just a few tiny … little … pushes.
In this situation it ended predictably, without any need for intervention. But that’s a choice I don’t wish on (almost) anyone.
So, yeah, fuck, and yeah, asking people who were in that situation, yeah, ask them.
Update (2021-10-14): After recently stumbling upon a comment about “A Good Death?” in the New England Journal of Medicine by a doctor in palliative medicine, yeah, I can only repeat the “given it would end badly, it ended in the best way possible (of the bad options, that is)”. That could have ended much, much worse. And yeah, still hurts.