It's Getting Harder to Die

Recently watched someone close die over a couple days, after a long decline.

The last 24 hours were monstrous to inflict on anyone. Torture. Evil.

Hours and hours of faltering breathing, often restarting with what was plainly a panicked adrenaline-pumping response. It looked like they felt like they were about to drown every few minutes, hour, after hour, no relief. No IV fluids (terminal anyway, so no trying to keep them alive with techniques like that) and unable to drink, so certainly terribly thirsty the whole time. Unable to communicate or really engage with surroundings, and quite high on pain meds anyway (the closest thing to a mercy in all this). It’s fucked up that that’s a fairly normal way for dying people to make their exit. I’m sure there are all kinds of problems with trying to provide a way out when someone can’t make the choice for themselves, without opening it up to abuse, but damn, I hope this isn’t the best we can do because it’s terrible.

It's worse than the article says, because it's from a doctor's perspective.

I have CRPS, one of the contenders for worst chronic pain you can have. It's a "suicide disease", because if it advances to stage 3/4, there's a suicide rate of about 70%. It sucks a lot. I've had well over 200 spinal procedures over the last 30 years to try to mitigate the pain, with dozens of other surgical procedures in less tricky spots.

I also have Brugada Syndrome, a "drop dead suddenly without warning" disease. When diagnosed, I wanted to take my time before consenting to having an implanted defib. The doctors announced that "Mr Foster, we believe you are not rational at the moment", fortunately I had a friend with me who assured them I was probably the most rational man in Brisbane.

I was threatened with an ITO (Involuntary Treatment Order) if I didn't go ahead with having an internal defibrilator put in me. I went ahead with the procedure.

So I can't even die by refusing treatment, as "sane" people resist dying at all odds. If I don't want invasive, painful procedures that take over a year to recover from, then the courts will claim I'm suicidal and issue an order to the hospitals to proceed with more bloody cutting.

No, sane people say "I've had enough". Fortunately my current GP understands, as he says "Sometimes people feel they've had enough medicine".

Kind of a tough read, I just turned 37 and this was the year when it really hit home that your body degrades and sometimes it never goes back to "normal". I was used to sports injuries being a pattern of injury -> recovery -> ramp back up to 100%, but have suffered some injuries recently and am coming to terms with realizing I will never return to 100%. They will be lingering things I deal with for the rest of my life.

It is terrifying transitioning from seeing health as innate to viewing it as something you need to carefully nurture or it will slip away.

I'd like dying to be as easy as flicking a switch.

Medically-assisted suicide ought to be available to anyone (not only of sound mind and not only with a terminal condition), and at any time. People ought to have the right to die, just like they have the right to water, food, and shelter. In most countries it is currently easier to take other people's lives than to take one's own.

People ought to be able to step into a hospital, ask 'hey, I'd like to die', sign a couple of forms saying 'yes, I'd really really like to die', step into an anoxic chamber, and be put into hypoxia and brain death in a matter of minutes. Obviously, an emergency stop plunger ought to be available in case the person in question changes their mind.

The belief that life is a gift from a god is a highly Christocentric, Western view that I disagree with. We are brought into the world without any real consent; we should at least be able to easily choose the date, time, and manner of our passing if we so desire.

The topic of a “living will” came up in a family discussion after my mother’s funeral.

None of us have a pathological desire to live at all costs, but as it turns out, figuring out when to say “yeah I’m done, see yah” and halt treatment is way more complex than it first seems, especially when making the decision for someone else. Things can happen very fast, and there’s a bunch of things that basically require a job in the industry to know ahead of time.

If anyone knows of some comprehensive resources for helping define reasonable limits, I’d love to hear it.

Had a pretty close childhood friend choose assisted suicide (in California) a few years ago after a year long battle with blood cancer. It's not easy to do, I think his biggest fear was losing his ability to consent as his mental condition declined rapidly. The link below outlines the process. He was getting home hospice care staying at an Aunt's house hear the hospital he was treated at. I don't think it is the right choice for everybody, but I certainly think in my friends case it was.

https://www.uclahealth.org/patient-resources/support-informa...

Slightly tangential, but I believe this article segues into a discussion about assisted suicide or euthanasia at the end of life.

My entire family has been suffering over the past 18 months watching my 88-year-old grandmother slowly pass away from age-related deterioration and AD.

I worked with mice during my PhD training in the US. If a lab was caught with lab mice suffering like my grandmother is without euthanizing them, the lab would be liable to be shut down.

So I ask: why am I forced to sit and watch my grandmother suffer slowly to death? Why can't there be assisted suicide/euthanasia protocols in place to prevent this suffering?

I faced a similar problem as my wife had a chorionangioma, a placenta tumor. Or it was my son, it’s even hard to tell who had it as placenta is external to both. In the hospital where we were, they were doing their best to keep the baby alive despite all the issues with the rupture of the amniotic sac and body damages that he already had, which I understand. What I didn’t understand, and still don’t, is how they were getting ready to try and keep him alive once he would be born, most probably at the 6th month and with probable brain and other physical damages. I respect doctors who can’t choose between their patients life and death, and most of all parents who love their to be born kids so much that they are ready to face a life or hardship. I just think that medicine should not just focus on keeping patients alive, but also consider the quality of their life before taking a decision together with the relatives.

I think sometimes these articles don't pose the question all that well. The way I would ask it is:

Imagine a pain scale of 1-10; pretend 10 is so high that you die from the pain.

Is it worth living at a 7-8 at every moment continuously, to extend your life for 2 months? How about living at a 9 for just 2 more weeks?

If you say "no" that just means you're not hooked up to a machine where that's your living experience (not like someone is actively killing you).

I think, when you put it that way, it becomes easier to set some rules around it. Btw I'm pretty close to someone who would always choose to live longer, but even I would say no to, for example, living at a 10 of pain for just 1 more week of life.

Regular reminder to read Being Mortal: Medicine and What Matters in the End by Atul Gawande. It offers a detailed and sometimes shocking look into the end of life/palliative care system in the country and show just how broken the incentives are industry-wide.

> Spend your remaining days at home if possible.

This sounds appealing in the abstract but one thing to consider is the impact on other family members. My parents had a neighbor who chose to remain at home. However that meant his wife also had to stay at home to look after him (yes there were nurses who came in a couple of times a day, but a lot of the burden was still on the wife.) This meant her own life basically shut down. She never went out, and spent at least a year fully housebound for his care.

Once he died, she was able to go out, reconnect with friends, kickstart her life again. Couldn't help feeling the husband's choice here was a selfish one.

ICUs are amazing technology. You can keep almost anyone in a temporary state of stasis. This is great for people who have a condition that just needs more time to heal (like a lot of people with Covid, or people after car accidents). But for people who have something unrecoverable, it’s a very weird place to be. You’ve been pushed off the ledge and are now frozen in midair. You will hit the ground when the magic is removed, but you also can’t stay frozen forever.

if you opt to stay home to die but youre in terrible pain, who's going to administer the pain meds? whos going to be there 24/7 to clean up or get you whatever you need? what this article is talking about is either very very very expensive home care or a family that basically become full time carers. with our society no longer advocating communal living and a sort of "every man for themselves" attitude throughout life, how is all of this actually supposed to work in reality? -- nice sentiment but unrealistic except for a very lucky few it seems. this is what hospitals are for now.

Someone in the medical profession explained to me what 'do everything you can' means to doctors and surgeons, it's a binding command. My instructions are likely going to be 'do two things that you probably should at this point and then go have lunch'

...and it's getting harder on the families too with nothing to really address it. It used to be one day you'd drop dead, or get really sick and be dead not long after, and your family after a terrible shock could begin readjusting to the new reality without their loved one. Now you can have what used to be a death sentence and continue living for years or even decades. But the systems which support the patient's life are not supporting their families, who have to live with the stress and financial burden of keeping their loved one alive, and the prolonged grieving process which can now take up a huge chunk of their lives and still doesn't really prepare them for death anyway.

I'm not saying that we need to get rid of medical advances that prolong life, it's just that these things have created new problems that we aren't dealing with and that not many people are really talking about.

It means also that "Do not go gentle into that good night" is not realistic most of the time. We have a saying in Arabic that I only understood after my father died, it to the effect that something is so difficult that:'' it is harder than the spirit leaving the body'. I think it is time that hospice care evolve to make it easier.

how about suicide? i'd compare it to knowing when the party is over and then going home instead of getting yet another drink and miserably trying to score with the last remaining woman. it's an art and it can be trained at many occasions. now for the act itself - the regular hn crowd should be technically apt enough to assemble the required gear around a big gas cylinder of nitrogen. that's as peaceful as it gets.

in this modern day of increased privatized medicine, health insurances and self-absorbed people, what is the incentive to let a person die?

the longer you keep someone with medical needs and decent insurance the more you can milk the their insurance or whatever wealth they may have accumulated.

self-absorbed closed ones can also easily dismiss the sick person desires and needs.

I see no incentive for this to change.

Humans have long handled death in a very backwards and disgusting manner.

We have humans, who can clearly assert a particular desire when of sound, lucid mind. Yet we do not allow them to have any control over one of the most personal experiences their life will ever offer them, when in a medical establishment. We don't allow people to assert a desire to be euthanized gently. We force them to die on their own (by being unwilling to do anything more than remove care), no matter how much they may be suffering. Of course, we always have the option of taking matters into our own hands, with all the potential stumbling blocks that provides.

In contrast, we have pets, who can not verbally assert any particular desire, due to the lack of common language. We can't ask them if they want to stay with their loved ones, or if they're suffering and want to be free. Yet we make the decision to actively end their lives every single day in the world.

Logically, this seems completely backwards to me. It seems like we should err on the side of not ending a pet's life when they don't want us to, and that we should allow people of sound mind to articulate a self-aware desire to have a more dignified, gentle death as much as possible.

There is a great book called The Conspiracy Against the Human Race that talks about this in a way that makes sense to me:

As a survival-happy species, our successes are calculated in the number of years we have extended our lives, with the reduction of suffering being only incidental to this aim. To stay alive under almost any circumstances is a sickness with us. Nothing could be more unhealthy than to “watch one’s health” as a means of stalling death. The lengths we will go as procrastinators of that last gasp only demonstrate a morbid dread of that event. By contrast, our fear of suffering is deficient.

The book is very pessimistic but that’s the point, I quite enjoyed it.

We don't let people die with grace in the US. Not only is pathetic and not very noble, but its a massive drain on the cost of healthcare.

This is a really good article, not least for the list of ways that you will be kept medically alive.

As for the premise of the article, it is definitely getting easier to die. We had the plumbers and the rubbish collecting workers clear up our communicable chronic diseases, we de-industrialised and cleared up the air, we quit smoking, put on our seat belts and reigned in the alcohol. So far so good.

But, if you look at the physiques of people, the levels of car dependency and the predominance of the Standard American Diet, it seems that people are going the way of Joe Biden in old age, to have what you might call a loss of cognitive abilities, yet able to be preserved near indefinitely. The President isn't unalive, but he isn't really there. Millions are in the same boat, functionally alive but only from the eye-sockets down, and probably with bits of their colon or bladder removed due to cancer that they have bravely fought with a diet of highly processed food and a sedentary lifestyle.

When it comes to how to live a healthy life, there is so much misinformation that we are all an experiment of n = 1. There is no realm of information that is anywhere near as confusing as diet. Really you are forced to join one tribe or another if longevity is your game. Either you are going to go all in on 'everything in moderation' or go fully ketogenic meat only carnivore, or the other way, full on vegan.

The Google confirmation bias is strong with the whole topic, and I am sure that I could look up 'can I get omega three fatty acid things from eating goat hair' and somewhere there will be an article or 'scientific paper' promoting the eating of goat hair, with a study from some goat herders living in Outer Mongolia, thousands of miles away from any fish, with excellent omega three things going on. There will also be an 'adsense' advert for where you can get goat hair online and Reddit threads on whether you need yak shavings instead.

a Christian fundamentalist doing a 180 on Terri Schiavo because she rediscovered Luddism is certainly an interesting take

I'd like to see a survey about opinions on keeping people alive using modern medicine. The survey would have a filter for people who believe in evolution and survival of the fittest. How is the cognitive dissonance around it resolved?

The author doesn’t believe his content is worth reading (full page „popup“). Good he included this feature so I can leave the page early.

I hope "noble sacrifice" becomes a viable end-of-life option one day. Specifically, one-way tickets to Mars, which will be invaluable for doing human-led research and construction, paving the way for future colonists, but without the expense and burden of a return journey.

There must be some ultra-high-risk test pilot jobs available for 75 year olds with inoperable diseases. Go out with a bang!

And that's a good thing

Or maybe people got softer. Do we remember the 90% of time where humans roamed this planet barefoot without painkillers, or healthcare, or a guaranteed source of water that does not carry those roundworm parasites that love to swim inside your eyes, or anti polar bear sprays so they didn't tear you off and eat alive?. Those were hard deaths.

The 120% of the times, being alive is the smartest option, even if this carries a cost.