This thoughtful and profound essay brings home the lived reality of the patients who are treated by our systems.
The writer speaks lived truth that has a tone of heft and substantiality.
Human life is a fragile and temporary gift. Most of us are lucky enough to have a few moments of transporting and profound beauty and joy.
While life's journey has an inevitable end for all of us, we can help each other in innumerable ways to make the journey more bearable, and at times joyful.
I'm an old guy, and have an artificial hip and cataract implants. I'm deeply grateful for the quality of life I've been gifted to receive by the medical people who make these kinds of things possible.
I hope that the brain treatment system I work on will be a similar gift to the lives of at least some of the patients who require that kind of treatment.
>While life's journey has an inevitable end for all of us, we can help each other in innumerable ways to make the journey more bearable, and at times joyful.
very nicely articulated. thank you.
the series of essays is moving and profound. what we take for granted is a miracle and we dont realize it, and are caught up in trifles.
thanks to whoever brought this our collective attention.
I have asked doctors and anesthesiologists to come back into the room and finish answering the questions. I know they are busy. But I know they want to put you at ease and give you all the info you need.
- What side effects can we expect from the medication? - What alternatives are possible? What if the treatment doesn’t work? - What is the prognosis - worst case and best case? - How long will recovery be? - When can family members/loved ones see them? - Who will contact the family members during the procedure? - How soon will the patient be up and about? - Do you know the patients limits and directives - like no resuscitation?
More than once, I have helped the doctors hear something that they had missed, buried in all of those charts. More than once, I helped a friend or loved one gain some clarity on why the course of action is best or whether they want to explore something else.
Powerful story! And helpful language to think about them as a Bridge to Nowhere.
1) In a major metro area, it's very likely that not all of the chaplains on staff at a hospital are Christian. It's rare, but increasingly likely, that chaplains are not even religious.
2) Chaplains have a primary responsibility to and the time and relationships with hospital staff to advocate for the patient and their family in addition to their more stereotypical duties providing emotional, religious, or spiritual support.
3) Chaplains also provide various types of support and guidance for your family or other loved ones -- so having a relationship with the hospital's chaplains can be a huge help for your loved ones if you are incapacitated for advocacy to the medical team, for navigating logistics, and for providing someone dispassionate to listen.
Of course, YMMV based on your location. In the deep south or outside a major metro, the chances that a given chaplain is an evangelical Christian who might try to convert you are higher.
And even in a major metro, you might find a chaplain who doesn't really want to do their job.
But if you're in the hospital and having trouble navigating the bureaucracy or getting the attention of your medical team, asking to visit with a chaplain can be very productive toward those ends.
I personally know of someone who almost died in a hospital from a medical error , and survived only because a family member decided to check on him at the hospital
"Having someone - doesn’t have to be religious to be clear - who has been in those rooms can be helpful."
Starting a flame about religion is very not appropriate. Please don't do that.
I just want religion left out of such topics, because it makes everything worse.
"Eschew flamebait. Avoid generic tangents. Omit internet tropes."
"Please don't use Hacker News for political or ideological battle. That tramples curiosity."
>Sometimes, this is the gift of having a trained chaplain, pastor
oh, yeah?
For example your categorization of "cannot tell fantasy from reality" would not be a good description of say a buddhist."
Equally binding a view of mental health to religion seems a stretch. Perhaps you have experienced that, but I suspect that connection is not universal.
I didn't downvote you, I say these things to explain why you likely were downvoted. Not because your post was about religion, but because your viewpoint is both unnecessarily broad, and kinda missed the point.
The point was that having an experienced advocate on your side, who understands the process, who isn't under the mental strain of a recent terminal diagnosis, can assist you with good decisions.
If you are in a community of faith, and it's likely that the leaders in that community have walked this path before. If you are not then seek that person from wherever you are in community.
I am saying that in the US the stigma against taking mental health seriously is structural. Consider the amount of voters who think demonic possession is real (tens of millions of people) don't vote to fund mental health services. There are millions of our fellow Americans who are real people and think mental illness is punishment from god or think homosexuality or transexuality is a choice and a sin. We shouldn't start on abortion, but every argument against choice has its roots in religion.
These people have made a huge impact on healthcare and baked in tons of little decisions into healthcare that impact all of everytime we interact with the healthcare system. Live in a state where depression meds aren't covered, or maybe only some are? Might be them?
Clearly I am discussing in the US context, as such buddhism isn't a practical and a corner-case. You can pretend I am not referring to it (even though reincarnation is clearly problematic for people attached to this life based on evidence).
Certainly the US Christian approach to mental health US not reflective of non US Christians and certainly not other religions.
My experience of US Christians is that most operate in good faith, and are as open to good mental health as any other group. Some proportion, a particularly vocal portion, have weird views about lots of things.
People who think demonic possession is real (again, I am asserting tens of millsions of americans and probablly close to a billion worldwide) are operating in good faith. They actually think that stuff is real and think that locking up or torturing mentally ill people is a good solution. They honestly that actually think torturing people to remove demons is good because they believe in things like souls and think these have a role to play in medicine.
> Narrowing the context from "religion" to US Christianity certainly changes the scope of your comment.
Yes, it does, but this US centric very capitalistic place to discuss tech stuff. So I am just trying to exclude fantasy because with how much we know it can't help more than it hurts.
I understood OP’s general point as: bringing religion, particularly US Christianity, into life and death decisions is fraught due to its practitioners’ general and typical inability to separate fantasy from reality. With the disclaimer that there are always degrees and exceptions. Sure, it’s a spicy take, but I don’t think he needs to get piled on like he has in this thread.
Neurosurgery is the hardest residency, and the hardest physician career. However, this difficulty is in-part due to the bravado of the neurosurgeons themselves. During neurosurgery residency, you have to learn to be a brain and spine surgeon, undertake two years of research, learn how to do endovascular interventions, and (of course) manage all of the pre-/post- operative care including clinic. It is not uncommon for a single PGY-2 neurosurgery resident to follow 100+ inpatients. Suffice to say neurosurgeons are overburdened, yet they themselves have fought against reducing training hours.
Patients can generally expect to spend less than 30 minutes speaking to their surgeon before/after their surgery.
For those unaware, you can become a spine surgeon via either the neurosurgery or orthopedic surgery routes. Just my simple opinion, but I think spine surgery should be its own residency. Brains should be left to the neurosurgeons and extremities to the orthopedists.
I was given Option 3. I decided not to take it, and they were fairly confident that I'd be in a wheelchair, the rest of my life. That did not happen.
As things turned out, I was OK, but it took me a couple of months to learn to walk and chew gum at the same time.
If I may ask, I am curious, how was this experience of not being able to do this and learning to do this again? We often overlook how complex doing such two things at the same time is because we master such skills quite early in life.
I was in physical therapy for two months, and it was probably two years, before pretty much all traces of the effects were gone.
Nowadays (almost 30 years later), it's as if it never happened.
I did get a cool haircut from the whole thing. Very punk.
I'd blame the medical doctor. In similar cases, they use misleading remarks and partial information to guide the patient in the path they prefer.
1. We must do something.
2. This is something.
3. Therefore, we must do this.
People seem to feel like there's merit in "trying something, anything" even if by trying something you may actively make the problem worse. We need to accept that we only have limited control. Bad things happen.
It is incredibly hard to come up-to-speed on a newly diagnosed (or newly undiagnosed) medical situation.
But I think many many people will encounter it and be unprepared. They may encounter it early when a friend or family member faces the situation.
Unfortunately a lot of learning happens after the fact.
For example, just finding out if someone has glioblastoma can leave you physically or mentally debilitated. One of the people I knew had a biopsy, but that caused them to be bedridden without control of one side of their body.
So in relation to preparation, I think people should prepare. Reading articles like this one (or his other articles) can be uncomfortable, but well spent.
When you are finding this out it's usually because you already have significant symptoms that progress because growing mass puts a pressure on the brain. So Option 3 is increasingly suffer what you are already suffering till death, prompt one in case of fast growing tumor, more distant in case of the slow one. If you want to do anything else the best course of action is to remove what shouldn't be there. You could in theory remove just a small bit just to find out what it is, but it won't help with the symptoms you already have and risks of biopsy are very similar to risks of surgery which will also potentially give you more information. Also the information that biopsy could provide would be most relevant in the worst case so that the surgery is done with large margins which might result with few months longer survival but way worse quality of life.
So a surgery is basically a no brainer in your already terrible situation. If you are super lucky it might turn out that you had in your brain something relatively benign which, after recovery can give you at least years of normal life.
Context: My partner has a large grade 3 glioma and first surgery, radiation and chemotherapy gave her 5 years of completely normal life and the second one after recurrence another year.
Our approach to all of this was that no one really knows how long they specifically are going to live. And that doesn't change with diagnosis. Statistics is just that. Statistics.
Calling such life bridge to nowhere is just a bleak perspective. Same could be said about every life with similar accuracy.
> There's very little anyone can do
Hence the validity of the "do nothing" option.
> If you want to do anything else
But you may want to do nothing. There are valid reasons for it.
> So a surgery is basically a no brainer
Non sequitur.
Your context suggests that you think doing something is a good idea because you know of a case where it worked out. This is availability bias.
> Statistics is just that. Statistics.
What is this even supposed to mean? Statistics is a useful tool. You're denying it with no argument. "I don't like statistics."
It's hard. If you knew you are doomed that would be a valid option. But you can't know that even though it's likely. And on a slim chance you are not doomed, choosing to do nothing is pretty much impossible unless you already wanted to die and suffer unitl then. As I said, usually you don't randomly find out about tumor in your brain. Usually you learn about it because of some progressing symptoms. So you decide on a treatment based on those symptoms. Doing nothing when you suffer and something can be done to help with that is very hard despite risks involved and even ultimate pointlessness. You don't make decisions in those situations based on some theoretical existential framework. You make them on practical grounds. And "do nothing" is almost never a result. "Do nothing" is just an option you might regret not takin with hindsight or an option you might consider ahead of time entirely theoretically. In practice this option is almost never chosen and it's not because of doctors comunicate badly and could do better. It's because of practicality and need for maintaining illusion of agency over your life. It's very hard to belive your life will really end even though you know it's true. Doing something really is no brainer, bacause alternative is not really do nothing. It's lie down, suffer and most likely die suffering progressively more and you would have to consciously choose that. Rarely anone does.
> What is this even supposed to mean? Statistics is a useful tool. You're denying it with no argument. "I don't like statistics."
I love statistics. But statistics by its very nature can't predict what will be an outcome of a single coin toss you are about to do. There's nothing that can't predict that singular result. The only thing you really know is that neither head, nor tails is impossible. You life for you isn't a statistic. It's singular.
The Harvard educated doctor treated me brusquely when I tried asking more questions. He told me to immediately get a hip replacement.
I did a bunch of research and decided to try lifestyle changes first. I quit playing golf and running. I took up cycling and taking anti inflammatory supplements (no drugs). In a couple of months, the pain was mostly gone. Now I have no pain at all and do a large variety of farming manual labor work and am roofing my own house.
Doctors see you as a paycheck. Always do your own research into diagnoses and alternative treatments.
I understand that these cancers requires carbs to grow, and going into ketosis - which is to say, fully depleting the body of carbs and having none in your diet - is a highly effective coping mechanism. The cancer basically stops growing. Of course, you then have to live on protein and fat, but better that, than death.
In my case, it was a benign tumor (a hemangioma), that sprung a leak. The leak was what caused the problem.
Doctor said it had probably been in my brain, all my life. It just started bleeding, for some unknown reason.
>Radiation exposure. People who have had radiation to the head are at higher risk for brain tumors. Most often this exposure comes from radiation therapy used to treat another type of cancer, like leukemia during childhood.
>Certain inherited syndromes. People who are born with certain syndromes, such as neurofibromatosis, von Hippel-Lindau disease, Li-Fraumeni syndrome, and tuberous sclerosis, have an increased risk of brain tumors.
>Family history of brain tumors. Most people with brain tumors don’t have a family history of the disease. But in rare cases, tumors can run in families.
>Weak immune system. People who have a weak immune system have a higher risk of developing central nervous system lymphoma. This includes people who have AIDS or who have had an organ transplant.
https://www.urmc.rochester.edu/encyclopedia/content.aspx?con...
This one is really promising:
>A study found that people who walked or ran at least 1.8 MET·h·d had a 42.5% lower risk of fatal brain cancer.
Notably, dental xrays have been linked with tumors. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3396782/
The US is the "largest market" for dental xrays: https://www.grandviewresearch.com/industry-analysis/dental-x...
Conclusion Exposure to some dental x-rays performed in the past, when radiation exposure was greater than in the current era, appears to be associated with increased risk of intra-cranial meningioma.
>Our ability to detect an exercise-brain cancer relationship may relate to the use of cohorts specifically designed to detect exercise-health associations
You're just another input in their number go up paperclip maximizer - where your road leads beyond their number go up is not a concern for them.
But your comment is not limited to hospitals. It's true for every business. If I sell an ice-cream my interest ends after you pay for it. Equally I'm not going to withhold ice-cream from overweight people - my job is to sell ice-cream.
If the hospital was a non-profit, and they felt there was no viable appropriate medical intervention, and they sent the patient home with no action you'd likely complain about that too. (I would, I go to hospital with an expectation that they'll at least try to fix me.)
It's somewhat trite to blame the profit motive, partly because that encompasses all of us, and partly because hospitals and doctors are primed for action, not inaction.
This does not in any way justify pushing a patient into action when action may not be the best course for them.
Especially in this case, that's not what happened.
Patient was facing a very painful, certain, and more immediate death. Or with surgery the patient might live long enough to discover that the tumor is benign and continue with a decent quality of life.
Action objectively offered a chance of survival that a lack of action could not.
I'd argue that even though it wasn't the outcome he hoped for, the author lived long enough to write this piece because the doctor pushed for action.
I think that fairly well removes profit from consideration. The doctor made the best call from every angle given the facts presented, in my opinion.
Yes, the problem being wide-spread in no way diminishes it.
You can apply your logic to slavery and realize it works just as well. Look, everyone's buying and selling slaves, it's true for every business - it's somewhat trite to blame slavery, etc, etc.
In the end though, Medicine 2.0 is very good at discrete issues like a brain tumor. It's a good thing for those afflicted that there are profits to be made there because it means that there are huge facilities and training dedicated to these types of medical issues and their resolution.
> Suppose we have an AI whose only goal is to make as many paper clips as possible. The AI will realize quickly that it would be much better if there were no humans because humans might decide to switch it off. Because if humans do so, there would be fewer paper clips. Also, human bodies contain a lot of atoms that could be made into paper clips. The future that the AI would be trying to gear towards would be one in which there were a lot of paper clips but no humans..
EDIT: While the article is from 2014, Nick Bostrom's thought-experiment dates back to his 2003 thesis: https://nickbostrom.com/ethics/ai (props to @o11c for the correction)
-----
Of course, back in 2014 was before LLMs and visual-image-generators were a thing (StyleGan's paper was 2018), but Roko's Basilisk was described in 2010, which would colour people's thoughts of "AI" back then somewhat differently to today:
2014: "AI" means perfect and unbiased reasoning ability, total objectivity (given one's axioms); it will have the ability to outthink its human operator/sysadmin and somehow "escape" onto the Internet, and make a living for itself trading its services for Bitcoin before going-on to do literally anything it wants, like hack Russian nukes to bomb the US, so a paperclip-making AI really could kill us all.
2024: "AI" means using statistical tricks to generate text which contains frequent factual errors, unsound reasoning, and reflects our cultural-biases back at us. A paperclip-making AI will be the next Juicero before running our of VC funding.
I've updated my post with the correction.
In short if your doctor is not employed by you, you should be taking precautions accordingly.
This is an absolutely daft situation, but it is where we find ourselves.
His MO is selling people on his "exclusive network" of service providers and getting people not to trust normal doctors. He then comes up with a bunch of fake services to bill people for. He also really likes to prey on kids, because parents don't want to see their children suffer and will pay money if the kid says he's helping. Especially those that are wealthy or have trust funds.
The last straw was overprescribing benzodiazepines (incredibly addictive) to people with addiction issues.
He has good SEO, is incredibly litigious (why I'm posting this from a burner), and makes you feel good about your decisions. Most case managers do that. The service they sell is not better healthcare, but making you feel like you're getting good healthcare. Case managers sell you the idea that medicine is a giant conspiracy to bilk you out of your money. Then you accept paying the case manager a bunch of money, because at least *he's on your side*.
Generally, the doctors I see practice medicine because they want to help people, not out of a desire to make a ton of money. Sometimes their sales and social skills aren't very good because of that. OP wouldn't have had a better health outcome from a case manager in his blog post; just someone charging thousands of dollars for needless consults.
[1] https://doctors.cpso.on.ca/DoctorDetails/R-Rupert/0020809-25...
[2] https://www.cieps.com/Faculty%20bios/bio%20-%20rupert.htm