So when I read something like this, it just seems... so alien. I can't imagine a pain or any feeling, really, worth wishing I was dead over. There can't be anything worse than death. There just can't. Pretty much any amount of bad is preferable to infinite nothing.
Maybe the scariest part is that one day, I'm afraid I might change my mind. I'm afraid I might be brought to a point where I think, "Ah, this is it. This is the feeling that's worth dying to escape". The only thing scarier than the worst fear imaginable is the unthinkable idea of a pain so unimaginable that it makes succumbing to that fear seem like a mercy.
I thought I knew enough to jump into the swimming pool in my apartment complex. It was a quiet evening, and I was the only person in the swimming pool. Without thinking too much, I jumped into the pool, started executing the weird moves, and managed to reach the middle of the pool. It was at that time that the horror began.
Suddenly, I realized that I was in the middle of this 8' pool (I am 6' and some change) and that the water was pulling me in. I felt really helpless, and at that moment, it struck me that I might be drowning. This was it.
I was 23, fresh out of college with a decent job, had a whole bunch of plans, and it was all going to evaporate just like that. I didn't get any flashbacks of the life I've had so far, but I clearly remember thinking that my parents will be really sad and that the travel plans I had for the next month will never materialize. I really did think that I was going to die. I screamed out for help, but there wasn't anyone around (and I might not have been making much sound).
Fortunately, I didn't give up, and something told me to keep moving my arms and legs. I felt that I was finally moving ahead. I gave it everything I had and grabbed a corner of the pool. I came out and ran back to my apartment. All of this took about ~20 seconds or less. Still, I could have been dead (later that night, I looked up the statistics for the number of deaths per year due to drowning in a swimming pool, and it was a non-trivial number, ~4000/year in the US IIRC).
So anyway, that incident changed my perspective of life and death altogether. I care about my life a lot, and I don't want to die, but something changed that day. I developed an urgency to get to things on my to-do list, because I realized that the lights can go off rather unceremoniously and without much notice. I also like to think that I'm less scared of death now, but who knows, really.
I don't suggest having a near-death experience to lose your fear of death, but maybe try not to overthink things not in your hand in general. Some things are just too random to worry about.
It’s arguably the first technique people should teach/master when learning to swim as an adult, as it’s the ultimate “fallback technique” in a situation like one you describe. It’s widely taught in the US Navy, but applicable in freshwater swimming, as well.
Drowning is indeed a shockingly common and particularly tragic way to die. Most multigenerational families personally know of at least one person that’s drowned, to put the statistic you shared in perspective. :/
Objectively, I know it won't hurt any more than before I was born, and it won't really be infinite nothing because to experience that I'd have to have consciousness, which I won't have. But it really is difficult for me to really grasp the concept of my own non-existence.
On a related note, sometimes I feel pangs of great sorrow when I look out on the world and realize I will one day not be able to experience this. Looking off into the hills, at the trees, the mountains, nature -- is so strikingly beautiful, that I can't imagine being deprived of it. Not exactly a rational fear, since again you can't feel the deprivation if you don't exist. But it strikes at odd times, just like grief for my dad, or my brothers, and in some ways it feels like shades of the same feeling.
Sorry I've got nothing witty to say, but you are definitely not the only person to have such thoughts. I hope you find a way to keep them from tormenting you too much. I've mostly managed to cure the 2AM habit of staring into the abyss, which is a step in the right direction.
During a particularly horrific drug trip, I realized that this is very much not true. I thought I was stuck in an eternal state of suffering, of which there was no escape. The level of suffering was indescribable, and the thought that it was going to continue forever was unbearable.
Now, I'm not really afraid of death. It's just the complete cessation of consciousness. Not that different from a deep, dreamless sleep. Infinitely preferable to that unceasing hell I thought I was stuck in.
Dying looks like it’s probably not going to be fun. But, I’m not worried about being dead.
I'm not as afraid of being dead, so much as I am most afraid of the short time before. Knowing that I'm dying, that soon I will be dead.
And also the finality of it. Pre-birth ended with my birth. Death will never end.
No trick dispels. Religion used to try,
That vast moth-eaten musical brocade
Created to pretend we never die,
And specious stuff that says No rational being
Can fear a thing it will not feel, not seeing
That this is what we fear—no sight, no sound,
No touch or taste or smell, nothing to think with,
Nothing to love or link with,
The anaesthetic from which none come round.
—Philip Larkin, Aubade
(italics original)
I feel the same way.
But I didn't always feel that way. It took time, a lot of anxiety, a bit of meditation, some drugs, and reading philosophy to get me to the point where I no long really fear death. Sure, the process of dying itself can still be scary, because of the potential for pain. But I'm not really afraid of what comes after.
For OP or anyone else reading this dealing with similar death anxiety: I'd recommend a combination of therapy, philosophy, and some meditation. Psychedelics help some people, but they can also make it worse, so I'd be really careful unless you have a guide that you trust.
The anxiety / fear / angst is a state that arises in your brain and body, as part of the survival instinct. It can also malfunction and kick into a much higher gear. It's possible to sort of re-wire your brain in such a way that it no longer responds to the idea of death in the same way. Your brain shapes your reality, and it's possible to change how you perceive and respond to things. It can just take some work, and maybe some therapy and medication in some cases.
Should one be "pretty sure"? I take it you are assuming that materialism is true, that the mind is ultimately dependent on a functioning physical brain for its existence, such that if the brain permanently ceases to function, the associated mind will permanently cease to exist.
But, what if some day, in the infinite future, random processes cause atoms to spontaneously reassemble into a working brain, and not just any working brain, but a proper continuation of your individual particular brain, in proper continuity with your last conscious moment before death? Would that not be a genuine personal afterlife? You can say the probability of such an event is unimaginably small, but can we say that it is absolutely zero? And if it is not absolutely zero, then given an infinite future, any event with non-zero probability will almost surely eventually occur, including that one. Following this line of thought, you can arrive at the conclusion that an afterlife is possible, maybe even likely, maybe even highly likely. But unlike religious conceptions of the afterlife, we cannot be confident that it will make any sense – it is just as likely (even more likely) to be the absurd hell of a solitary hallucinating Boltzmann brain [0] floating through the cold blackness of space, as the final triumph of the just and the good which the Abrahamic religions promise.
In an infinite universe, how certain can you really be that anything is ever permanent, including the cessation of one's existence? Faced with the potential infinity of the future, being certain, even just being "pretty sure", that any end is permanent seems to me to be having far more confidence than one rationally ought to have.
If the choice is between a religious afterlife which makes sense, and a non-religious afterlife of infinite absurdity, maybe we ought to hope that (some) religion is true?
For some of us, religion has answers. My wife's grannie lived long. She told us a bit too long!
The world sort of got away from her. Husband, friends, gone and yet she continues on.
One of her favorite things was to talk about her youth, how it all was. I recorded this for family to come and it gave her great comfort.
Near her end she was not in pain, but just tired. She would awaken and sometimes say, "Oh, I am still here. Ok then, can I get my hot tea please?"
She felt it was time to go home, where others had gone. She wondered why she was still here after so many close to her were already home, gone.
I am not religious, so none of that works for me. I wish it did sometimes.
I have lost people, some recently during this pandemic. I hate it. I hate that I too will be lost to someone to whom I matter.
Hate that an awful lot.
So far, nobody reports back, so this is it for us. I don't fear it as much.
I fear losing mine more than being among the lost.
I hate that lonely feeling when someone is dead, gone forever, no more, but for the parts of them they leave with others.
As I travel, I have come to value experiences, others, and what I can share with younger people, those parts of me that will endure.
Right now, I have balance. This is all OK. I know it will not endure, so I try hard to amplify the good and be present.
When my spouse or I die, the other will be tested hard. We married young and sharing this journey with someone is the best!
We may be here to help others thrive.
I fear neither of us will when our time here together ends. I fear that a lot.
Inside our bodies, cells are constantly dying, and new cells are returning in their place. Death isn't something that happens someday; it's something that is always with us. In this way, we see life and death aren't separate; they're the same thing. There is no "someday I'll be dead." There is only a continuum of change. A cloud in the sky doesn't spontaneously appear and vanish from existence by magic. It appears to be magic, but really we know it just changes forms. Existence and nonexistence are magical inventions of the human mind. Reality is beyond that.
So we have this concept of death as being in a dreamless sleep forever, but that's just a concept of the mind. Whatever we think death is, it's just a thought. Death is beyond thought and concept, so our understanding is forever inaccurate.
We talk about nothingness as if it's being locked up in any abyss. But where did the universe come from? Well, it came from nothingness. If that nothingness can birth a universe and reality, returning to that after death isn't so bad... you're just going home.
More simply, I think we just cease to exist and don't feel anything. Just as you didn't exist before you were born, and so on.
My only fear of death is for my family. They depend on me for so much. So, I took out giant life insurance policies, and that gives me a weird comfort in it.
I think the closest we can get pre-death is the experience of being under general anesthesia. It's not a pit, or a void, or darkness. Just a complete cessation.
(Of course, this is assuming that general anesthesia does actually cause the complete cessation of all conscious processes, and not just the formation of memory. I don't know enough to say whether we're entirely certain about that.)
I'm probably quoting someone somewhere sometime with "our bodies are vessels, driven by souls, enroute to infinity", but I think this is the closest approximation to what I mixedly believe about life and death
evidently we are unique in our animal kingdom for having this soul/consciousness, whether it be planted or evolved, created or random
I like to toy with the ideas among civilisations of the belief that their afterlife can be envisioned here on Earth, passing on to a pre-imagined place
I live in the hope that those I love are reunited in death, on some remote-but-familiar plane of existence. the problem with this is that memory must be preserved to some degree and transcribed, as it would be odd e.g. to reunite with my father in his infancy. but problems and their questions such as these rest more easily than the cliche answers to the broader "what happens when"
at first I was hesitant to quote Iron Maiden lyrics here but then remembered a discussion from the other week on rap music, and the beautiful refrain seems poignant, so here goes "I will hope, my soul will fly, So I will live forever. Heart will die, my soul will fly, And I will live forever."
I'd say I'm roughly half afraid, half curious about what will happen when I die, but will never be persuaded it is nothing, so long as I live..
ultimately hope, belief, and online pondering are of little value, just more locks on the door to the unknown
When you turn your computer off the RAM is erased, the state is lost. Our brains are running on RAM.
Perhaps we have persistent, non-volatile storage too, but we have no way to access and continue running our conscious, outside of our brain.
There’s nothing to fear about that- it is the world we’ve always lived in, and the state after your brain stops processing is no different from the state of the universe before you were born.
Why do you say that? We have mountains of experimental evidence that animals of all kinds experience consciousness to a degree that rivals our own. We’re better at some forms of consciousness and they are better at others.
There's no reason to be afraid of your future self. He/she will do and decide what's good and right, with all the knowledge you earned up till know, plus anything to come. Why limit to your current self? ;-)
Death is a change, but it hold no more horror than pre-birth. Be at peace. Embrace your time. Live your life with purpose, love, humility and hope. Our ephemerality makes every moment meaningful, enjoy it.
Two - you have expressed the sentiment beautifully. I may want to steal it later. Thank you sincerely.
Time arrow points in the direction of less beauty existing.
To say that death isn't inevitable isn't the same as saying it's particularly likely that any of us will evade it, but the chance is not literally zero, and by my own estimates, I say it's non-negligible.
It's pretty uncontroversial to say that life extension technology is possible. There are times in the past when people didn't live as long as they now do. Finding more effective cancer/Alzheimer's/heart disease treatments is life extension. It's within the realm of possibilities that life extension tech will advance enough to let us live for some centuries. Cryonics (freezing yourself after death) is also something that could possibly work. It's possible that in the future, we'll figure out ways to successfully thaw and revive people who undergo cryonics.
Neither of these are immortality, exactly. For that you would need some sort of mind-state backup system or "consciousness uploading." That tech might not be available for a long time, but life extension/cryonics could hold many people over until it's available. Many people believe that it's either impossible, or that it wouldn't "be you" when you were restored from a backup. I think that these positions are wrong, but regardless, anyone who takes such a position has to allow that there's some possibility that they're wrong, and in fact such tech is possible and would work as intended. The theories of personal identity argued in Reasons and Persons by Derek Parfit are relevant here.
I think it's important that we don't accept death as inevitable, because if people don't hold out hope of conquering death, then it's less likely that we'll conquer it in time.
I never struggled with an intrusive fear of death, so I don't have detailed suggestions for how to overcome it. But facing up to the fact that you are probably going to die, and introspecting into what specifically makes you so afraid, then taking measures to address it — that sort of thing — will probably help.
Measures that might help, depending on the nature of one's fear:
- Starting a mindfulness meditation practice to learn to notice when you fear death, and learn to dismiss the fear
- Seeking psychotherapy with a similar goal
- Study philosophy. It's possible that your intrusive fear of death stems from contradictory beliefs you hold, and you just haven't noticed the contradiction.
- Registering for cryonics, so that you know that you have done something to fight back against death (this might well increase your fear of death, beware)
- Switch careers to work on life extension technology. When vikings raid your village, you will be afraid. But the nature of your fear will depend on whether you decide to cower in fear or take up arms and fight back. Maybe you prefer the fear felt by someone fighting back.
But remember that death is horrible, and it's right and proper to fear it, as long as the fear isn't too intrusive.
That we feel this way is what powers life, right? It's not an accident. It serves a function.
The problem is when that function becomes counterproductive by filling you with so much anxiety about death that your ability to live your life is impeded. This happens to a lot of people.
In some ways, us humans are too smart for our own good. We have the amazing ability to mentally time travel, and the ability to understand concepts like our own deaths. These higher level brain functions can clash with more fundamental drives, like the survival instinct. For many people, this conflict can become crippling.
Of course, everyone will have to make their own decision about whether this story is worthy of believing.
But, I feel I would be remiss if I did not point out that the whole point of Christianity, and especially Easter, is that Death is not the end. Christians believe that God who created the entire universe, took on human form. This man who was God in human flesh, Jesus, did all sorts of miracles. Finally, he was publicly executed by the Romans, and buried in a tomb. However, 3 days later, he rose from the dead!
That is what Christians all over the world are celebrating today! That death is not the end, that Jesus conquered death, and because he rose, if we trust in him, we will also triumph over death.
Death is no longer the feared end to everything, but rather just the doorway to enter into a an unimaginably more exciting and fulfilling life.
I don't think anyone captures that sentiment as well as CS Lewis in the final paragraphs of his book, The Last Battle:
"There was a real railway accident," said Aslan softly. "Your father and mother and all of you are—as you used to call it in the Shadow-Lands—dead. The term is over: the holidays have begun. The dream is ended: this is the morning."
And as He spoke He no longer looked to them like a lion; but the things that began to happen after that were so great and beautiful that I cannot write them. And for us this is the end of all the stories, and we can most truly say that they all lived happily ever after. But for them it was only the beginning of the real story. All their life in this world and all their adventures in Narnia had only been the cover and the title page: now at last they were beginning Chapter One of the Great Story, which no one on earth has read: which goes on for ever: in which every chapter is better than the one before.
Two sides of the same coin, compassion and tyranny inextricably linked.
Unless you're not religious and then there is only either despair or acceptance -and this life is the only one we should cherish and fight for.
You will change your thoughts as you age.
The Monday ~2 weeks before she passed she was at the hospital, I asked her if this was all really what she wanted. She really wanted to change over to hospice and focus on palliative care.
We began advocating for her to switch. She didn't have a ton of energy at the hospital to express/follow up on her wishes without someone there. The hospital seems like they would have erred on continuing treatment until all hope was exhausted. But once we began advocating for this want of her, the gears really shifted. She got all the morphine she wanted, and various other comfort measures. The palliative care team was driving the show. She was eventually able to go home for home hospice, and she had a final weekend of energy before passing Sunday before last.
All to say, having an advocate that help you with your wishes when you're in a weakened state feels like it is pretty huge. I can't imagine what would have happened if me and my siblings weren't able to help her. She _might_ have been able to get what she wanted ultimately, but all the follow up, checking in, caretaking etc you really want to have someone there advocating for you.
I think it is effectively, required for most hospital stays. Even a fully capable individual with all that is going on in a hospital would IMO find it really hard to hear every important word, understand every context, and would struggle to make truly informed decisions.
When my son was 6 he was in the hospital for an illness that we still don't entirely understand (thankfully he recovered completely and is doing well). My wife or I were there the entire time. We got updates from the local university, other doctors from other hospitals.
Just updating my wife with all the details was absolutely mind mindbogglingly hard to really convey all the information accurately. When we were there together it was even harder for her to keep up.. in person.
I felt like I had an advantage as in my line of work I do a lot of troubleshooting, so change this, observe that, check this after that, accounting for tradeoffs of making some decisions, and the methodology totally made sense to me. My wife not as much.
I feel like there's a need for a medically trained advocates to really help people with these kinds of things.
In the end, we lucked out that in the ER the first night we had a wonderful specialist who really took on the primary role in her care going forward, and the “shadow” family team stood down. And this was for a relatively simple issue that within 24 hours was determined not to be life threatening! I have so much more empathy for families in really challenging situations like yours now, just the sheer volume of information..
> Having an advocate
There aren’t enough upvotes in the world to highlight this! The average person never understands until they go through it. My dad, my brothers, and I were her advocates. At one point, laying the facts out to the doctors who were delaying some of her tests due to “insurance requirements” (false) and pleading with them that it felt like my mom was being forced to advocate for her own life at a time when she should be taken care of by the “experts”!
We took shifts, around the clock, getting visitation exceptions to at least have 1 person sitting in the room with her at all times. Because the doctors had the amazing ability to burst into a room and present options to a half-cognizant woman suffering from cancer and expect her to make a decision there-and-then.
> I can’t imagine what would have happened if me and my siblings weren’t able to help her.
The exact thought I had as I walked out of the cancer ward past all the other rooms filled with people, laying there, alone. No one to advocate for them.
There’s just a dizzying amount of information, decisions, staying on top of doctors, following up, describing symptoms such that nurses / doctors actually check to rule out new causes (e.g. describing stomach pain and lack of bowel movements over multiple days before they finally checked her stomach and found a blockage due to a new tumor in her intestine)... it’s hard to imagine how anyone could get along alone in a hospital with a complex case.
Overall, the hospital experience left a bad taste in my mouth.
I was happy that my mom knew she was loved by all of us though, and I got be bedside and talk with her for her last couple weeks. I never thought I’d lose my mom this early, but I’m glad there wasn’t anything left unresolved between us. She knew I was proud of her; she knew she was the best mom a son could ever ask for in my eyes. I loved her.
My experience exactly, and repeatedly. I am old enough now to have spent many hours in the hospital next to family members. I don't say this to increase anyone's anxiety about hospital stays, but the care is better when close allies are there throughout stay.
The doctor was particularly upset because I was a healthcare proxy (that was the first thing he asked when bursting into the room) and complained that he just talked to my brother who was also a healthcare proxy.
It took a good several minutes until I explained that I was only there to visit my mom. You know, that human thing? Why I dressed nice and brought flowers? He complained some more and then pivoted down the hall, trailing two silent, masked students in his wake.
I Also lived through this doing night shifts every night for months switching with family members who all are in the medical or medically adjacent fields, having the fire hose of information shot in our direction for medical decisions that had to be made 24/7 For my intubated father in a medically induced coma for cerebral hemmoragic stroke.
The amount of Medical staff that visited at all hours of the day and night to take blood samples, do breathing treatments for intubation, soiled gown changing at their convenience (they would simply let your loved one sit in their soiled gown at odd hours of the day which leads to UTI and life threatening Septic shock had I not been their to sound the alarm).
All this plus medical errors at nursing shift change are very real concerns and happened shockingly often to us with wrong doses, late doses, miscommunications, etc. it is truly dizzinging and terrifying to say the least and my heart goes out to COVID patients who had family blocked from being bedside to advocate for their care prior to vaccine development.
Life is truly short, having stared the death of loved ones in the face you know your time will come to be in that same hospital bed. Make your time on this planet count. Forget the adtech and user manipulation/deception/surveillance gigs and use your software dev superpowers for doing good things to look back on from your hospital bed. That’s how my perspective has changed to live my life moving forward helping others with my tech skill set is truly humbling.
It was the most important perspective I gained
It was 16 plus years ago, and I can’t get his suffering out of my mind.
I didn’t even like (I loved him though) my father, but know one should go through what he did. My sister was lowering his dose of medication because she wanted him to spend time with her kids. In all honestly, I believe she wanted him awake, and miserable, so she could get his estate together. Meaning—she wanted more?
The whole process was just awful. His death completely destroyed a very fragile family.
When he first went into the hospital he was basically given the bad news. He had a huge liver tumor. His stomach was greatly distended. That didn’t stop doctors coming in and palpating the mass. I think they were using my father’s condition to learn what a liver tumor felt like? Multiple people were palpating the mass, even after the scans? I finally said it’s hurting him?
He got his death sentence. We left the hospital. A few weeks later a Dr. told him he would operate on him. We went to the appointment. The doctor gave this sanctimonious speech about drinking. My father was obviously very sick. My father said his drinking days were over. I felt the lecture from this doctor was completely unnecessary. My dad left the appointment happy with hope. A week and a half later he got a call from the doctor stating he couldn’t do the surgery. My dad had a Cadillac medical plan, but the doctor said he couldn’t do the surgery.
All I can add is California passed a Death with Dignity bill. When it’s my time I will use it.
Something I don't understand: why don't they start with that? Why wait until you're near death? I'm assuming there's a good reason but I'd also hope we have the technology and chemical engineering know how to create pain killers they can be used for long term care effectively.
If anyone has any links/expertise I'd love to understand this component.
We don’t. See also: https://en.wikipedia.org/wiki/Opioid_epidemic_in_the_United_...
Just highlighting this in case people overlook it, since it's a very important concept.
If one of your friends or relatives is ill, going to the doctor or hospital alone should be considered a mistake. The advocate ensures enough questions are asked, despite the condition of the ill person.
I talk to a lot of people in developing countries who have little money, and I tell them to take their ill relative in a taxi or rideshare to a clinic, do whatever tests are necessary, and take them home if possible.
That way the patient can get the most out of the healthcare system for a minimal, controlled expense before checking in.
I watched my wife go through similar things. Her stomach stopped working, and even with groundbreaking surgery and one of the top 10 gastroenterologists in the world at her side, nothing could be done. She tried to get treatments that she thought might help, until one day her GP just down the road finally told her what no doctor had the guts to say out loud: "you're dying."
That was a punch in the guts. That was late November 2019. She'd just turned 45. She went on hospice care just 4 months later. Hospice care was the best medical care she'd ever received. Finally she was in less pain (but still a lot of pain- starving to death is the opposite of pleasant). Finally able to have one on one care with a nurse who genuinely cared about her.
She passed away at home in February 2021 at 46 year old. Nobody tried to violently resuscitate her. Nobody stuck tubes in bad places. Nobody caused her more suffering in order to prolong her suffering. The green paper on the wall said so. One of my own biggest fears was having our home invaded by EMT's and police, with EMT's shattering her frail body to try to save it. But that never happened.
So, doctors have it right. Die in peace the old fashioned way, if possible.
She had a minor relatively non-aggressive but unusual cancer. It was removed and she had optional radiotherapy to be sure it didn't return. She bounced back great - but then the odd stomach issues started.
No doctor could find or diagnose the cause. She was slowly fading away and getting weaker and weaker. She spent more time in hospital than out. She was always at the mercy of the next life-threatening PICC infection. The only explanation we ever had for the gastroparesis was that the radiotherapy damaged the nervous system around her stomach. It was years of misery and suffering, all the while propped up by TPN through starvation. Eventually she found her release, but like you, it changed my perspective on life and dying.
Hope this isn’t too personal a question, but you mentioned her stomach stopped working. I was under the impression that with modern medical care people can actually live without a functioning stomach. Is this incorrect or was there something else?
Thanks for sharing!
And yes, dying in peace at home like that is the best way to go if you ask me.
I am, however, glad that the end was the way you wanted it. From your comments, it's clear that it could have been much worse.
One nitpick: I am not sure what "the green paper on the wall said so" really means. Not a native English speaker.
By the end of the film, he says goodbye to his loved ones and has an assisted suicide to escape the pain he was in. It was a really touching documentary. As a society, we have a big focus on “fighting” cancer or other big illnesses. I guess there is a quiet, difficult dignity in deciding to face your mortality too, but it’s rarely talked about.
It is a completely different world. You've heard the words - "cancer", "Alzheimer's", "stroke", and others - but you literally can't imagine the scale of suffering involved until you find out first hand.
I'm not sure people aren't willing to talk about to them. It may be that most people simply don't have the experience, and so are happy living their lives until this other world comes knocking.
I suspect it would make a huge difference to many things - not least health care funding - if there was more awareness of what these words mean.
I remember how he describes this different world and also how mistaken the popular notion of „fighting cancer“ seemed to him when in reality it is a passive suffering.
I am ashamed I cannot get my parents to hire moving people - it is such an easy trick to say you can move something and not be wary. Imagine a loved one being miserable for the rest of their lives for wanting to move a couch a bit; it is just so depressingly avoidable.
To put it in perspective - the back pain industry is at 100+ billion a year in the USA[1] but spending on video games for 2020 was only at 55 billion or so[2].
[0]: https://www.wired.com/2008/01/ff-aimystery/
[1]: https://qz.com/1010259/the-100-billion-per-year-back-pain-in...
[2]: https://www.theverge.com/2021/1/15/22233003/us-npd-group-vid...
I believe it's very natural to do everything in our power to prevent death or at the very least delay it, and to convince others - whose pain we don't feel - to do the same.
I can't even begin to imagine how miserable a person must feel when they are decided that they're leaving us early. It goes against millennia of both collective, and also ones own individual fear and uncertainty. With my liberal Dutch upbringing, have nothing but respect for that.
[1] https://www.canada.ca/en/health-canada/services/medical-assi...
[2] https://www.canada.ca/en/department-justice/news/2021/03/new...
We have some family members who cared a lot about him and have very deep pockets, so they assembled a team of the best specialists they could find over a variety of disciplines and demanded they throw every treatment possible at him to try to keep him alive. So in his late 80's, with terminal cancer, they have him on chemo, pumped full of an ever changing diet of pills, going through one invasive procedure after another. He was a smart guy too and I think he hated it but didn't have the heart to tell his family who thought they were doing the right thing to stop.
All for what? To keep him barely alive hooked up to machines for an extra month or two? It was one of the saddest things I've ever witnessed that that is what the end of his life had to look like.
Sorry, not to downplay what you've said. That sounds pretty terrible. It got me thinking about these things.
Quality of life means still willing to be here, able to get more out of it all than it takes from us.
We both have agreed the other will do the right thing however painful it may be to who ever gets stuck with it first.
We do not know what our survivor does. We fear that.
My family came to a different result for somebody the same age.
We looked at it from the standpoint of, "With blood cancer in their 80s, is there an endgame that resulted in getting better?"
If you think about it for a minute, you don't get better in your 80s in a meaningful way, since you aren't going to live forever.
So we asked them what their wishes were, and did not continue treatment. Everybody reached an agreement that wasn't all about the emotions of people who weren't ill.
A year or three is a long time at that age. Think about the milestones the grandchildren or great grand children of someone in their 80s are going through. They want to be alive to see that.
No one live forever. My father had bowel cancer in his mid-eighties 4 years ago. He had an operation to remove the tumour and had a very unpleasant month or so recuperating but needed no other treatment. He appears happy and could potentially live another 10 years.
My dad suffered from a stroke four years ago. I lost him that day, although he’s trapped in his own body. He’s debilitated and suffering in a way that is awful. He’s a writer who can’t speak or use his fingers; a chef who can barely feed himself. My mom is a former medical professional guilt ridden over calling 911.
It’s not anyone’s fault; the doctors and paramedics acted quickly and did their best. But our ability to sustain life is ahead of our ability to save it.
My 94yo grandfather passed a few days before Christmas last year and I had been staying next-door, taking care of him for about 2 months leading-up to it (helping him to the bathroom a few times per night, getting him water, etc. Congestive heart failure is not the dignified and pain-free death you might think it would be.)
I found his body maybe 5 minutes after his heart had failed, and it took another 20 for the paramedics to arrive. I was really upset to find that when they arrived, without a DNR on file anywhere, they were required to attempt to resuscitate. I was sitting there with my grandmother hoping that it wouldn't come to that, and luckily common sense prevailed and they were able to get a doctor on the phone to sign-off on avoiding CPR. But for a while there, I was really concerned that my grandmother and I were going to have to watch them desecrate his body which had been lifeless for close to 30 minutes. Horrible.
By default, liability overrules common-sense when it comes to medical treatment, and absolutely everyone loses.
But she's also been a nurse, and has said that she didn't know anyone who lived past 80 who hadn't regretted it.
I don't know what conclusions to draw...
While there are many doctors that don't want the end to drag out, there are many who believe DNRs and living wills are not the best thing either (with a good bit of overlap too). Generally, you only want a DNR if you know you have a terminal illness or are very old. The living will can be better, but you still can't cover every scenario or account for all factors. At least you can outline some concepts and name a person to carry out those decisions the best they can.
But... it's easier in hindsight, isn't it? Obviously futile care on someone old is one thing, but if I had a stroke now, ... I have reasonable odds to come out if it almost OK with some minor deficit, so electing not to be treated would be dubious.
And some stroke treatments, like rTPA, do a lot more for odds of disability than they do for mortality. So by declining too much treatment I could be increasing my odds of a bad outcome but surviving.
If you're behind by a couple of strokes in golf near the end of the course, you take some risky shots you wouldn't ordinarily take. They probably won't pay off, but they're the only remaining way to "win".
<sarcasm>Wow, I thought, that really must have helped reduce some other persons' suffering! All hail to the experimenter who cooked up her treatment! <sarcasm>
Somewhere in my recent readings doctors were characterized as sadists (I thought HN but can't find the post). Cancer treatment experimenters may be prime candidates for that characterization, which sadly seems more explanatory than I would like.
How U.S. Doctors Die: A Cohort Study of Healthcare Use at the End of Life, https://doi.org/10.1111/jgs.14112
Clearly contradicts the OP, and looks a lot more factually based.
Long term care insurance is a scam. Don't bother. They will find any excuse not to pay. You'll need to go to court or arbitration and the legal fees will eat up any settlement.
When it's my time, I plan to go expediently. No heroic measures, no experimental drug trials. I'd rather my kids inherit what I've worked for in my life than hospitals, doctors, or nursing homes.
This is the problem: in US the first priority for medical care is profit.
All other aspects are not the first priority, including ethics and psychological health of the patient and the family.
Combine it with a litigation-happy society, greedy insurance companies, and a culture that treats longevity as an entitlement.
Then add the poor focus on prevention and the egregiously lax standards for food/air/water/housing health and safety.
Well, I have news for you...
> my kids inherit what I've worked for
Almost certainly that will also be taken away by the US government by the time you die.
[1] https://www.independent.co.uk/life-style/health-and-families...
In what way?
The following one year was tough, initially I was carried around in wheel chair, too much muscle loss by time of diagnosis. At first, my body was so weak that doctors decided I can't even take the first cycle of chemo at once. My arms were so bruised with all the poking that I had to move them carefully. Then chemo side effects started getting overwhelming. But slowly, things started working. One year in I was back on my feet, started working again. Two years in, here I am writing this comment and hoping for a healthy bright future for everyone out there.
It's better to get advice of multiple doctors, understand risk vs rewards. Yes, there maybe a point when its time to optimize for quality of life and give up, but that should be after one or two lines of treatments.
Although the article is written by a doctor, the article portrays medicine/ healthcare as something that doctors (people in the know) refuse, instead of the what really is happening: The doctors know more, and therefore can more easily make an informed decision. In some cases, this means they're willing to stop early when there is a very small (or zero) chance of success. This article is dangerous, because it flips people who default to treatment to default to no treatment, when their default should be to understand and make the informed decision, which has always been the case.
My personal experience with US healthcare is to get a wide perspective, asking different doctors (sometimes in different specialties) of their perspective. This is line with dataminer's advice to seek the advice of multiple doctors. In my case, I had 3 types of doctors to contact: Neurologists, Neurosurgeons (peripheral) and Orthopaedic surgeons, and all 3 doctors had different diagnoses. Only the neurosurgeon (who had the specialty in this exact issue) could make a correct diagnosis. The others were honestly, useless. These are experts in the field, and my health issue overlapped across all 3 fields, it was my decision to go to these different experts after doing my research. *No* doctor was telling me to go to a different doctor, thats for sure.
I did not like it > someone breaking their ribs in an attempt to resuscitate them with CPR (that’s what happens if CPR is done right).
Made it seem like it always happens when correct CPR is done.
"The conventional wisdom is that about 30% of patients suffer fractures or breaks during CPR. However, a 2015 study published in Resuscitation suggested that this percentage is quite a bit higher. The study analyzed autopsy data from 2,148 patients who received CPR for non-trauma-related cardiac arrest, and the statistics were as follows:
* Skeletal chest injuries were found in 86% of men and 91% of women.
* 59% of the men and 79% of the women had sternum fractures.
* 77% of the men and 85% of the women had rib fractures."
This goes along with the article's discussion of how doctors, in general, choose to receive far less care than the typical patient when faced with terminal illness. This choice grants an opportunity to live authentically, in Sartre's parlance, for their last months as opposed to going out via the indignity of excessive treatment (e.g., life support machines).
[1] https://www.theatlantic.com/international/archive/2014/09/pa...
Then you have all the thought-terminating cliches that float around such as "life has no meaning without death", "aging is beautiful", "aging is natural". Society is generally very pro-aging and consequently pro-death.
Of course, it's not a crazy attitude at all in our current world where aging is guaranteed. It's much easier to come to terms with something you know will happen for certain. People fear cancer far more than they do aging. The diseases of age are as brutal as they are numerous, and I can absolutely believe that dying is preferable to suffering in many cases. For thousands of years this has been the case, for thousands of years people have had to find ways to come to terms with it. Consequently this idea that aging is actually a good thing is embedded so deeply into our culture that it may as well be part of our DNA.
Why aren't we doing more about it? Why aren't billions being invested into research aiming to prevent/reverse aging? We outspend by a factor of at least 100x on treating the diseases caused by aging. We all know why: social pressures make it very difficult to advocate for without being seen as a naive fool scared of death reaching for immortality. The collective, pointless, preventable damage to humanity will continue to rage on.
This is my decision, and I won't go into details, because they are personal and I am not a doctor. Perhaps the point I desire most others get from my post is this:
We are all going to die. Usually unpleasantly. Most often, unexpectedly, even with a prolonged illness.
Plan your death. Plan your medical treatments. There are things you can control, you need to know & state what they are, and have it in writing.
I would prefer to avoid a department keeping me hooked up for stats and fees.
Wishing us all a pleasant death! With life being what it is, even some dignity while dying is a great gift.
I was lucky enough to see a prominent oncologist. He went through his file and gave me a few options. Since his esophagus was badly damaged all of them included drilling a hole in his abdomen through which he would be able to eat. Well, I should't say eat. The nutrients would be pored in. Oncologist said it's a procedure he would not wish upon his worst enemy. In those exact words. Knowing my father he would never agreed either.
So we switched to palliative care. We never told my mother and grandmother.
He died in his home early afternoon on New Year's Eve in 2012. surrounded by his family. He was 55.
I often think that, in a way, I killed my father.
It is not about quantity of life but quality of life, I’d say.
No, you saved him a lot of suffering. Its something very kind and brave to do
Of course for assurance is good to put money into convincing every patient to go home, die peacefully and refuse the expensive treatments that they would have to pay otherwise. "Kill-yourself-at-home kit, is good for ya" will be probably the next step.
Not trying to ignore the fact that healthcare looks very broken in some parts of the planet, but people has what they voted for.
Your opinion about me and my circumstances is very interesting. I appreciate the laugh. Thanks.
"The conventional wisdom is that about 30% of patients suffer fractures or breaks during CPR. However, a 2015 study published in Resuscitation suggested that this percentage is quite a bit higher. The study analyzed autopsy data from 2,148 patients who received CPR for non-trauma-related cardiac arrest, and the statistics were as follows:
* Skeletal chest injuries were found in 86% of men and 91% of women.
* 59% of the men and 79% of the women had sternum fractures.
* 77% of the men and 85% of the women had rib fractures."
How Doctors Die (2013) - https://news.ycombinator.com/item?id=22393335 - Feb 2020 (1 comment)
How Doctors Die (2011) - https://news.ycombinator.com/item?id=13122408 - Dec 2016 (45 comments)
How doctors choose to die (2012) - https://news.ycombinator.com/item?id=9260286 - March 2015 (81 comments)
How Doctors Die - https://news.ycombinator.com/item?id=7446014 - March 2014 (2 comments)
How Doctors Die (2011) - https://news.ycombinator.com/item?id=5104430 - Jan 2013 (94 comments)
How Doctors Die - https://news.ycombinator.com/item?id=3313570 - Dec 2011 (177 comments)
Edit: Just in case anyone's wondering, reposts are ok after a year or so (https://news.ycombinator.com/newsfaq.html). Listing past threads is just because they might be interesting.
https://www.thelancet.com/journals/lancet/article/PIIS0140-6...
Yes! This is, quite literally, survivorship bias. If the dice rolled on "debilitating postoperative stroke," he would have been less pleased. Based on the NYT article, he actually preferred no operation. But it seems there was enough ambiguity that the decision fell on his wife.
1. Donate your body to science, they'll cremate you for free (https://www.anatomygifts.org/)
and/or
2. Look into natural burial of your remains (http://www.orderofthegooddeath.com/resources/natural-burial)
Preparing for your death now, doesn't somehow influence when you're going to die. But it makes a world of difference to the people that survive after you
But to do same for children?
I think it is not about quantity of life.
It is about quality of life.
But I’m not so sure.
https://slatestarcodex.com/2013/07/17/who-by-very-slow-decay...
I was particularly struck by this comment from one of the readers:
""" My grandmother has dementia to the point that she yells and moans the same thing non stop 24 hours a day, including the phrase, “please help me”. This is continuous except for 15 minute patches of sleep here and there as she no longer really sleeps just dozes. She weighs 90 lbs if that and is eggshell fragile screaming when touched due to degenerative muscle tears compounded by arthritis. Her bowels no longer work and she fluctuates between constipation, where the assistants administer a suppository, or she has explosive diarrhea that must be cleaned up which requires moving her excessively and thus more screaming and claims of pain. She is on peritoneal dialysis and has congestive heart failure with a pace maker, prior to loosing all capacities a few months back she was swallowing nitroglycerin like candy and up until she stopped walking entirely my mom was dragging her to doctors and what not. Even then moving was difficult and required wheelchairs and walkers. Her dialysis port is always sore and semi infected despite meticulous hygiene.
She has a raging UTI on a twice monthly basis though she is bathed by attendants and her diaper and garments changed regularly. She is on oxygen though she does not even move about to use oxygen as she can no longer stand nor even muster the strength to hold a sippy cup. She has forgotten how to eat or even swallow and still she is forced to choke down at least 15 pills per day and takes the occasional bite if food which she may stop chewing and allow to fall from her mouth. Her mouth is so dry the pills do not even dissolve when they lodge so she has to be coaxed and coaxed endlessly and given water in a dropper. She has round the clock private care to the tune of a few thousand per month. I had rather this money go to medical research or a non profit hospital. This team also includes a physical therapist which is useless. She is always freezing and has to be by a fireplace or heater or covered in layers of heated blankets so comfort is hard to achieve.
She is moved around like a doll with much ado and her screaming in pain which my mom would claim was from her dementia and not so much pain. Finally after months of this torture on her poor failing little body my mother is now considering hospice care mainly due to the cocktail of pain killers and anti anxiety pills no longer soothe her at all-I really have no clue why it has not stopped her heart. It has been surreal to witness this and I feel so bad for people who do not have the resources or loved ones for even this much relief if relief is what you call it. However I think my grandmother would have never considered euthanasia or absence of life saving measures if given a choice while she was cogent because she had an unhealthy fear of death even then.
The way we view death is really twisted and I fault religious nonsense with a lot of that phobia. Modern medicine, while mostly positive, can be grotesque because it can extend life past a semblance of life. I personally have had a living will made since this despite being young and can only hope we make strides in having physician assisted suicide legalized so people have options. """
I don’t understand why this is downvoted. Maybe Due to the comment about religion, but I think it’s a fair remark.
From what I can tell, in my country - The Netherlands - it would never, ever get to this point.
We focus on quality of live, not quantity of life.
Well, Covid meant lockdowns and isolation, no friends, no restaurant, just her small apartment with no visitors. We could have 'window visits', like when we dressed up for Easter and waved at her through highly reflective plate glass.
Then she had a stroke. Couldn't speak, couldn't swallow. I thought she was going to die in hospital before we got her to hospice care. Tubes, beeps, shouts, blaring TVs, robot-like doctors.
When we brought her home -her own bedroom- and my siblings cared for her, she thrived. I designed a board for her to communicate with. She laughed, she ate (sort of) and even had her morning coffee looking out at the lake as she always loved.
She died in her sleep, cared for by her children. It wasn't pretty but it was the best anyone could hope for. As for me, I'm going to develop that board and help others with it.
In the UK there is an initiative to address some of these problems by having a proactive conversation with all patients before they become too sick. The ReSPECT process (https://www.resus.org.uk/respect/respect-healthcare-professi...) encourages clinicians and patients to establish a shared understanding of what outcomes the patient values and fears before recommending which clinical treatments they would and would not benefit from. It's adoption here has been very positive - for context there have been multiple problematic issues with the use of DNAR (Do Not Attempt Resuscitation) form - especially during the pandemic.
Someone who hasn't had a lifetime to grow accustomed to how, when, and why humans die is less likely to suddenly become accustomed to what a terminal illness means for them in the days following diagnosis and ahead of treatment. Particular to TFA's pancreatic cancer story, should I be diagnosed with it in a few years I'd imagine I'd want to stick it out for a while just because giving up would feel ... weird.
1. You will die.
2. Enjoy life.
3. Be kind.
I think that doctors spend a long time subconsciously thinking about this subject, and knowing full well that there are some conditions -- like gastro-oesphageal reflux disorder, let's say -- where it is overwhelmingly like that, with the help of the last few decades of technology, be something that you die with, and not of. The difference between refusing treatment may be pain initially, and a preposition to get cancer of the oesophagus later on. Then there are other conditions that are awful death sentences, and have been since time immemorial, diagnoses where a good outcome changes dying at home in four months to dying in a hospital in eight.
When I received a spinal injury following trauma, one of my colleagues (a cardiologist specialising in heart failure and transplant, both conditions where unfortunately a sizeable proportion of patients do not survive a long time) simply said to me: "well, this is life -- you're born, bad things happen, and then you die".
I found it oddly comforting, and had absolutely no qualms about taking the next dose of morphine...
Some people don't even want to know if there is a 10% that they will die, they's rather just die than face their own mortality. They know their nervous system can't handle that.
Here's the wayback copy of the intro: https://web.archive.org/web/20180415050715/https://www.satur...
And the video on YouTube: https://www.youtube.com/watch?v=_KG8Z428Hpw
I am also reminded of this book "Final Chapters: A Hospice Social Worker’s Stories of Courage, Heart and Power" which I found very insightful.
