Nurses are the unsung heroes of the hospital. Doctors get status and respect, but often it's the nurse keeping you alive by monitoring drug interactions and physical readouts that a busy or overconfident doctor has missed.
Never say someone is "just a nurse". It's a hardcore and highly technical job where one mistake can kill a patient and end the nurse's career.
I think nurses do get a lot of respect in the hospitals I've worked in. You certainly wouldn't be long tolerated if you were dismissive to them, at least.
I spent a lot of my childhood in hospitals. After a few years of fighting, my situation almost stabilized. Until a high ranking doctor decided to do an experiment on me, which eventually cost me all of my eye-sight. From my side, nurses get 10x more respect then doctors.
Oftentimes nurses have to choose between sacrificing themselves or another human in massively profit optimized enterprise to keep someone alive or to let that person suffer to make management realize certain shortcomings of that system.
Keep in mind that unless nurses keep their work/life boundaries there is actually no way for numbers oriented management to realize issues within certain doctor run departments.
It isn't that different from other corporations per se, but in the case of the nurses they have to choose between letting a patient suffer consequences for the sake of transparency or not. It is a moral dilemma.
It's higher variance than you're implying. Some nurses are angels, some are... not. This shouldn't be surprising, given that nurses are human just like the people who work in any other profession.
> Doctors get status and respect, but often it's the nurse
I don't buy this, because the "nurse who knows more than the residents" has been a stock character for a while. Nurses haven't been unsung for most of this century.
If anything, the perception has totally flipped, and another stock character (at least in the US) are doctors as "yes-men" and "butchers", preoccupied with getting back to playing golf, who only know how to prescribe a pill because the drug rep advertised it to them.
Nurses are lionized, and almost no one is saying "just a nurse" anymore:
Ever since I've become a father, stories of children dying or just barely surviving have an immense emotional impact on me. I almost cried when I read that the boy from the article survived the operation and had a second, better chance at life. I can't imagine what his parents must have been going through.
All this thanks to technological and medical progess. What would his fate have been 20 years earlier? 40 years earlier? Think of all the technology that was necessary to perform that operation. The technology needed to build and support that technology, ad infinitum. If you have the ability and the motivation to work in science or on new technology, please do so. Even if it's not directly related to medicine: Maybe that software you're writing will make it slightly easier to build other software that will make it slightly easier to build other software that will make it slightly easier to build a machine that one day helps save a young boy's life.
The article hints that the operation described took place 20 years ago. Already, in that time, we've made significant progress treating cystic fibrosis: we've developed ivacaftor, the first 'designer drug' that can really fix the disease, means that were they born today it's more likely that they wouldn't need the transplant in the first place. In some forms of cystic fibrosis, there is a specific genetic deficit that prevents the chloride channels in the lungs from functioning properly, meaning ultimately that patients get thick and sticky mucus in their lungs that becomes very easily colonised by bacteria (as well as many other problems elsewhere too). If they have the "right" form of cystic fibrosis, Ivacaftor specifically binds to their chloride channels, and improves the transport of chloride through the ion channel by binding to the channels directly to induce a non-conventional mode of gating which in turn increases the probability that the channel is open. It's a lifechanging / lifesaving drug, and it came on the market in 2013.
The design and implementation of ivacaftor relied upon knowledge from physics and mathematics to clinical medicine. I am a physical scientist working in healthcare (in medical imaging) and I feel overwhelmingly lucky that I am able to work on problems like this. But I am acutely aware that it is the end of a very long road: I use aspects of what was theoretical physics, worked out in the 1960s and 70s (especially by a French/Russian physicist called Anton Abragam) together with giant chunks of mathematics and statistical understanding -- all to work on complex problems in biology and medicine. Just because you do not work on medical problems directly does not mean that your work is not of use to us! I, my team and my colleagues, benefit hugely from technology ranging from the Linux kernel to "how I hacked this" guides on the internet.
Unfortunately, Ivacaftor is an insanely expensive drug. In the USA, it apparently costs "over US$300,000 per year" [1]; my copy of the BNF (79 -- March to September 2020) lists the price that the NHS pays as around £14k per month (~£168k pa). This is a lot of money -- and it will save a life. Unfortunately, it is my opinion that many of the largest problems facing the healthcare systems around the world at the moment are political. The nurse who wrote this article was employed in the UK, where taxpayers make the extremely altruistic generosity of the NHS a (strained, breaking) reality. We get economies of scale. But the system is utterly close to collapse -- there are around 100,000 job vacancies within it, there aren't enough healthcare professionals, and many in the profession are leaving for elsewhere due to extreme overwork and the effects of the pandemic. Some countries have it far better (e.g. Denmark) and others have it much, much worse. One of the things I am personally proud of is that the NHS and universities system in the UK explicitly do not have profit as a motive and the horrible decisions of "is it worth spending this amount of money to have a chance at saving a life" are taken out of the hands of patients and almost all clinicians: there are guidelines, they are evidenced-based and aim to be objective, and they are, broadly speaking, followed. It is for that reason that the mother of the child in the story "only" has to deal with the horrendous emotional trauma associated with his illness, and not necessarily the punishing financial cost associated with being a transplant recipient, dependent upon cyclosporin for the rest of his days, and with the threat of other problems later on (e.g. 'too small for size' syndrome, requiring another transplant). Other parents, and other children with cystic fibrosis elsewhere in the world, are not so lucky.
Thought I fully agree with your sentiment, I found working as a coder/scientist in a renowned hospital a braindeadening experience. On all sides walled in by commerce and vested interests, there is very, very, very little room for innovation. If there was, you'd be selected to be painting within the lines set out for you. Papers were glorified changelogs, and rather unsubstantive ones at that. I got very close to a burnout, on account of the vacuousness of the work. Personal marketing was the job, not actually coming up with better ways of doing things.
Larger 'innovative' projects ostensibly run by young researchers are often projects the institute/professor had already planned and done some (mental/political) groundwork for, rarely (ie never) were they on the intiative of the young researcher. Bandwidth for personal input from the young researcher was in practice very limited. Might have been a peculiarity of the department, afaik they attracted very few with their own money (and thus their own direction).
The further you are from the clinic and thus the bread and butter of the massively overpriced commercial instrumentation makers, the more freedom there is. So, whatever you choose, your impact is limited. If you want to make a real difference, my impression was that you better cozy up to industry or step over altogether.
I have a very rare immune-mediated neurological disease affecting my peripheral nervous system, that started at age 5, in 1994. The disease was discovered on NIH research grant funds in the 2000s. But, the grant funding is never remotely enough, respective to need, for society.
In 2012, my medical problems became so severe that I scavenged the medical literature. I was tremendously lucky to come across such literature, ultimately describing the disease I have. At the time, there were only 38 articles written about it. Anyways, I was tested for it, and I had the antibody.
Soon after, I literally had a near-death experience. Anyways, I was 22, and I was basically a kid. My parents and my twin brother pretty much saw me on my deathbed.
I am in pharmaceutical remission now, after trying about 10 different treatments, plus combinations of them. It was never statistically likely that I would end up like this, let alone be alive.
I am culturally American, but I hold dual citizenship also with Croatia, so I am a European Union citizen. I am not as sentimental about being American as other people. Honestly, the only reason why I would never renounce my American citizenship is because the US ultimately saved my life, along with others around the world.
I've been wondering a few times about how to best search the medical literature given a set of symptoms. How did you search for and find your particular disease?
Honestly, it is a lot of work. I searched for years, whenever I had "free time" in engineering school, because my problems never completely added up and I could never put my finger on it. I very well felt like I was on borrowed time and I knew I was in a lot of trouble, health-wise. It took me about 4 years to figure it out.
You have to keep an open mind, and PUBMED [1] is your friend. Also, if you do not have institutional access to journal articles, Sci-Hub [2] is your friend. Libgen [3] can also be your friend too.
Searching Google Scholar with advanced key terms also helps, but I find it important to keep a paper log of my queries, so I can also follow my thought process.
Ultimately, you have to learn how to be able to "play" with bits and pieces of information that you get from the articles, and make it (relate it) into something meaningful to you. It requires a lot of intuition, and if you find yourself bored, then you are not doing it right. Some people just have this sort of intuition, but anyone honestly can do it. Just focus on never getting bored with the information, and you will eventually learn this skill.
Anyways, the rare disease I have is called autoimmune autonomic ganglionopathy [4]. I wrote a story [5] on how I figured it out awhile back. People seem to enjoy reading it.
I guess the best way to answer your question: I basically searched everything I could about autonomic neuropathy (autoimmune autonomic ganglionopathy is a form of autonomic neuropathy--and I had already been diagnosed with "diabetes-realted autonomic neuropathy"), to see if there was anything that I could possibly relate to my situation. When the situation really got blown out of proportion, I started looking hardcore at really rare stuff.
If you are looking in terms of software-based solutions for an issue like this, the best resource is likely via Stanford University's SNAP group, which publishes BioSNAP datasets [1], which can be used for scaling.
For example, in the US, a lot of people are on a bunch of prescription drugs. This is called polypharmacy. Using AI, the SNAP group created AI to identify side-effects when on several drugs [2]. There is excellent sample code for this via the link I provided, that can be viewed on GitHub. Generally this is the case for all of the BioSNAP repositories.
There are also AI tools which Stanford has created which can help augment a deep search through the literature for a rare disease. For example, this "Disease-function association network" [3] can give useful outputs to help one direct a search for finding a certain rare disease.
> "This is a disease-function association network that contains information on relationships between diseases and cellular functions. Cellular functions capture biological processes (e.g., pathways made up of the activities of multiple proteins such as cell communication), cellular components (e.g., components where gene products are active such as mitochondria), and molecular functions (e.g., molecular activities of gene products such as drug binding). Nodes represent diseases and functions, and edges indicate associations between them."
The problem with AI is that it is intellectually bankrupt: it will tell you what it thinks, but it will not tell you why. So, it is critical to develop excellent intuition as an individual.
Working in a hospital setting is hard. Not just for doctors and nurses. It's a machine with many vital cogs, all trying to keep you alive. I once spent a couple of days working in an ICU -- monitoring the migration to a software system for patient records. The project ultimately failed, the tech wasn't ready, paper was more convenient. The things I saw, heard, and smelled during those couple of days, nearly 20 years ago, are still fresh in my memory.
You never want to end up in an ICU. But if you do end up there, know some of the most capable hands are looking after you.
Very good article, my only objection is following:
"Still, three people die in the UK every day while waiting for an organ. It should be compulsory, unless a person refuses. Opt out, not opt in — like it is in other countries. If a person would accept an organ if they were dying, then they should register as an organ donor themselves. Who would rather die than accept an organ? Nobody should die waiting for a kidney that is buried in the ground, disintegrating."
My problem with opt in automatically is that it works ethically in ideal world, but there is a also other side of the coin. In our world number of "accidents" could increase so certain wealthy people and their family members would get organs from suitable "donors".
I am not implying that necessarily wealthy would do it on their own but, it is quite likely that certain black and gray market would be created. Similar like cases of stolen children during the birth, while doctors were pronouncing them as dead.
I disagree. If you are willing to kill a person why would you care whether the person willingly agreed to a donation? You could also just fabricate a letter of consent.
I live in a country with Opt-out and the only thing I think that should be changed is that you should be informed about it actively (e.g. a letter on your 18th birthday or so), even though that might reduce the numbers of donators.
> but it is quite likely that certain black and gray market would be created.
I see your point. But, on the other hand, having so few organs available is what makes black market actually work. In Germany we already had a scandal where people bought their way up the waiting list.
Both situations are horrible, but I think that the opt-out solution is probably the better choice for avoiding/reducing black markets.
I don't think someone ready to murder people to take their organs will have problem with finding ways around "consent".
In fact, if more organs are available, it should limit the need for a black market. Imagine you are rich and in desperate need for an organ. You are not fundamentally evil, but you are really desperate, losing morality and ethics as the disease progressed. If someone can find you an organ before you get to murder then it will save the life of an innocent and your sanity, and maybe also your own life too, for the quicker response.
We allow wealth and resources from dead people to do the equivalent, when that could do far more good if redistributed.
One $million cash-rich person dying might lose a pair of useful kidneys but children are dying from dehydration through diarrheal disease that's relatively easy to treat and that persons cash could save more than 1 or 2 people, probably 100s (or more) ... so why is the moral equivalence not made. Surely taking someone's stuff by default is less imposing of a state than taking someone's flesh by default?
In addition to my previously stated opinion, a forgot to say that I would rather heavily invest more into organ printing, and organ growing than going into Opt In/Out organ donation defaulting/forcing people to do something they have any type of objection.
29 comments
[ 3.9 ms ] story [ 75.5 ms ] threadNever say someone is "just a nurse". It's a hardcore and highly technical job where one mistake can kill a patient and end the nurse's career.
Keep in mind that unless nurses keep their work/life boundaries there is actually no way for numbers oriented management to realize issues within certain doctor run departments.
It isn't that different from other corporations per se, but in the case of the nurses they have to choose between letting a patient suffer consequences for the sake of transparency or not. It is a moral dilemma.
This hospital might the be the only place, I have seen, where doctors egos are put in check. Maybe too much?
I remember feeling sorry for this one doctor, whom seemed like a decent guy.
I don't buy this, because the "nurse who knows more than the residents" has been a stock character for a while. Nurses haven't been unsung for most of this century.
If anything, the perception has totally flipped, and another stock character (at least in the US) are doctors as "yes-men" and "butchers", preoccupied with getting back to playing golf, who only know how to prescribe a pill because the drug rep advertised it to them.
Nurses are lionized, and almost no one is saying "just a nurse" anymore:
https://news.gallup.com/poll/274673/nurses-continue-rate-hig...
All this thanks to technological and medical progess. What would his fate have been 20 years earlier? 40 years earlier? Think of all the technology that was necessary to perform that operation. The technology needed to build and support that technology, ad infinitum. If you have the ability and the motivation to work in science or on new technology, please do so. Even if it's not directly related to medicine: Maybe that software you're writing will make it slightly easier to build other software that will make it slightly easier to build other software that will make it slightly easier to build a machine that one day helps save a young boy's life.
The design and implementation of ivacaftor relied upon knowledge from physics and mathematics to clinical medicine. I am a physical scientist working in healthcare (in medical imaging) and I feel overwhelmingly lucky that I am able to work on problems like this. But I am acutely aware that it is the end of a very long road: I use aspects of what was theoretical physics, worked out in the 1960s and 70s (especially by a French/Russian physicist called Anton Abragam) together with giant chunks of mathematics and statistical understanding -- all to work on complex problems in biology and medicine. Just because you do not work on medical problems directly does not mean that your work is not of use to us! I, my team and my colleagues, benefit hugely from technology ranging from the Linux kernel to "how I hacked this" guides on the internet.
Unfortunately, Ivacaftor is an insanely expensive drug. In the USA, it apparently costs "over US$300,000 per year" [1]; my copy of the BNF (79 -- March to September 2020) lists the price that the NHS pays as around £14k per month (~£168k pa). This is a lot of money -- and it will save a life. Unfortunately, it is my opinion that many of the largest problems facing the healthcare systems around the world at the moment are political. The nurse who wrote this article was employed in the UK, where taxpayers make the extremely altruistic generosity of the NHS a (strained, breaking) reality. We get economies of scale. But the system is utterly close to collapse -- there are around 100,000 job vacancies within it, there aren't enough healthcare professionals, and many in the profession are leaving for elsewhere due to extreme overwork and the effects of the pandemic. Some countries have it far better (e.g. Denmark) and others have it much, much worse. One of the things I am personally proud of is that the NHS and universities system in the UK explicitly do not have profit as a motive and the horrible decisions of "is it worth spending this amount of money to have a chance at saving a life" are taken out of the hands of patients and almost all clinicians: there are guidelines, they are evidenced-based and aim to be objective, and they are, broadly speaking, followed. It is for that reason that the mother of the child in the story "only" has to deal with the horrendous emotional trauma associated with his illness, and not necessarily the punishing financial cost associated with being a transplant recipient, dependent upon cyclosporin for the rest of his days, and with the threat of other problems later on (e.g. 'too small for size' syndrome, requiring another transplant). Other parents, and other children with cystic fibrosis elsewhere in the world, are not so lucky.
---- [1] https://en.wikipedia.org/wiki/Ivacaftor
What does that mean?
The further you are from the clinic and thus the bread and butter of the massively overpriced commercial instrumentation makers, the more freedom there is. So, whatever you choose, your impact is limited. If you want to make a real difference, my impression was that you better cozy up to industry or step over altogether.
In 2012, my medical problems became so severe that I scavenged the medical literature. I was tremendously lucky to come across such literature, ultimately describing the disease I have. At the time, there were only 38 articles written about it. Anyways, I was tested for it, and I had the antibody.
Soon after, I literally had a near-death experience. Anyways, I was 22, and I was basically a kid. My parents and my twin brother pretty much saw me on my deathbed.
I am in pharmaceutical remission now, after trying about 10 different treatments, plus combinations of them. It was never statistically likely that I would end up like this, let alone be alive.
I am culturally American, but I hold dual citizenship also with Croatia, so I am a European Union citizen. I am not as sentimental about being American as other people. Honestly, the only reason why I would never renounce my American citizenship is because the US ultimately saved my life, along with others around the world.
You have to keep an open mind, and PUBMED [1] is your friend. Also, if you do not have institutional access to journal articles, Sci-Hub [2] is your friend. Libgen [3] can also be your friend too.
Searching Google Scholar with advanced key terms also helps, but I find it important to keep a paper log of my queries, so I can also follow my thought process.
Ultimately, you have to learn how to be able to "play" with bits and pieces of information that you get from the articles, and make it (relate it) into something meaningful to you. It requires a lot of intuition, and if you find yourself bored, then you are not doing it right. Some people just have this sort of intuition, but anyone honestly can do it. Just focus on never getting bored with the information, and you will eventually learn this skill.
Anyways, the rare disease I have is called autoimmune autonomic ganglionopathy [4]. I wrote a story [5] on how I figured it out awhile back. People seem to enjoy reading it.
I guess the best way to answer your question: I basically searched everything I could about autonomic neuropathy (autoimmune autonomic ganglionopathy is a form of autonomic neuropathy--and I had already been diagnosed with "diabetes-realted autonomic neuropathy"), to see if there was anything that I could possibly relate to my situation. When the situation really got blown out of proportion, I started looking hardcore at really rare stuff.
[1] PUBMED: https://pubmed.ncbi.nlm.nih.gov/
[2] Sci-Hub: https://sci-hub.se/
[3] Libgen: http://libgen.rs/
[4] US Government Information Page on Autoimmune Autonomic Ganglionopathy: https://rarediseases.info.nih.gov/diseases/11917/autoimmune-...
[5] My Story on How I got Diagnosed with Autoimmune Autonomic Ganglionopathy: https://rareandextraordinarycom.wordpress.com/2016/05/14/fir...
Thanks as well for writing up your story, it was indeed a good read. I with you all the best with your health!
I also hope this helps.
If you are looking in terms of software-based solutions for an issue like this, the best resource is likely via Stanford University's SNAP group, which publishes BioSNAP datasets [1], which can be used for scaling.
For example, in the US, a lot of people are on a bunch of prescription drugs. This is called polypharmacy. Using AI, the SNAP group created AI to identify side-effects when on several drugs [2]. There is excellent sample code for this via the link I provided, that can be viewed on GitHub. Generally this is the case for all of the BioSNAP repositories.
There are also AI tools which Stanford has created which can help augment a deep search through the literature for a rare disease. For example, this "Disease-function association network" [3] can give useful outputs to help one direct a search for finding a certain rare disease.
> "This is a disease-function association network that contains information on relationships between diseases and cellular functions. Cellular functions capture biological processes (e.g., pathways made up of the activities of multiple proteins such as cell communication), cellular components (e.g., components where gene products are active such as mitochondria), and molecular functions (e.g., molecular activities of gene products such as drug binding). Nodes represent diseases and functions, and edges indicate associations between them."
The problem with AI is that it is intellectually bankrupt: it will tell you what it thinks, but it will not tell you why. So, it is critical to develop excellent intuition as an individual.
[1] Stanford BioSNAP Repositories: http://snap.stanford.edu/biodata/index.html
[2] Polypharmacy side-effect association network: http://snap.stanford.edu/biodata/datasets/10017/10017-ChChSe...
[3] Disease-function association network: http://snap.stanford.edu/biodata/datasets/10019/10019-DF-Min...
You never want to end up in an ICU. But if you do end up there, know some of the most capable hands are looking after you.
"Still, three people die in the UK every day while waiting for an organ. It should be compulsory, unless a person refuses. Opt out, not opt in — like it is in other countries. If a person would accept an organ if they were dying, then they should register as an organ donor themselves. Who would rather die than accept an organ? Nobody should die waiting for a kidney that is buried in the ground, disintegrating."
My problem with opt in automatically is that it works ethically in ideal world, but there is a also other side of the coin. In our world number of "accidents" could increase so certain wealthy people and their family members would get organs from suitable "donors". I am not implying that necessarily wealthy would do it on their own but, it is quite likely that certain black and gray market would be created. Similar like cases of stolen children during the birth, while doctors were pronouncing them as dead.
I live in a country with Opt-out and the only thing I think that should be changed is that you should be informed about it actively (e.g. a letter on your 18th birthday or so), even though that might reduce the numbers of donators.
I see your point. But, on the other hand, having so few organs available is what makes black market actually work. In Germany we already had a scandal where people bought their way up the waiting list.
Both situations are horrible, but I think that the opt-out solution is probably the better choice for avoiding/reducing black markets.
In fact, if more organs are available, it should limit the need for a black market. Imagine you are rich and in desperate need for an organ. You are not fundamentally evil, but you are really desperate, losing morality and ethics as the disease progressed. If someone can find you an organ before you get to murder then it will save the life of an innocent and your sanity, and maybe also your own life too, for the quicker response.
One $million cash-rich person dying might lose a pair of useful kidneys but children are dying from dehydration through diarrheal disease that's relatively easy to treat and that persons cash could save more than 1 or 2 people, probably 100s (or more) ... so why is the moral equivalence not made. Surely taking someone's stuff by default is less imposing of a state than taking someone's flesh by default?
[1] https://www.organdonation.nhs.uk/helping-you-to-decide/about...