When A Daughter Dies

http://www.freakonomics.com/2012/10/16/when-a-daughter-dies/

by jvilalta • 14 years ago

324 178 14 years ago

freakonomics.com

jeffehobbs• 14 years ago

Heartbreaking. I hope for a cure for cancer in our lifetimes.

sciurus• 14 years ago

There will never be a cure for cancer. There will be cures for cancers.

ams61103• 14 years ago

I would even say there will never be cures for cancers. There will be treatments.

maskedinvader• 14 years ago

very touching and heartbreaking read..

dandrews• 14 years ago

I was struck by the amount of care that was seemingly influenced by fear of litigation. An ambulance driver diverted to a closer e/r despite having a physician onboard. A nurse wouldn't sanction ice chips without the admitting physician's chop. Exhausting and time-consuming tests needlessly repeated.

I once asked a veterinarian acquaintance of mine why he hadn't become a physician. "Wouldn't you rather drive something fancier than that pickup truck?" I needled, gesturing out the window at his old F150. "Yeah" he replied, "but those guys spend most of their time doing paperwork. I get to practice medicine."

hkmurakami• 14 years ago

>I once asked a veterinarian acquaintance of mine why he hadn't become a physician. "Wouldn't you rather drive something fancier than that pickup truck?" I needled, gesturing out the window at his old F150. "Yeah" he replied, "but those guys spend most of their time doing paperwork. I get to practice medicine."

That is an amazing (albeit gravely unfortunate) quote. I'm going to share it with some friends who are studying to become vets themselves (I hope that's alright with you).

Thanks for sharing the anecdote :).

brown9-2• 14 years ago

Unfortunate how? Based on the choice of car?

lordlicorice• 14 years ago

I think it has more to do with bureaucracy than with fear of litigation. In an ecosystem as complicated as medical care, lots of policies and procedures accumulate over time and there's nobody with the authority to cut through the bullshit and redesign the system.

I imagine that these policies come about not from lawyers' memos, but from the physicians themselves.

tibbon• 14 years ago

I've had several conversations with my vet about how his practice is so much smoother because he doesn't have to deal with an insurance industry (both from the sides of patients and a huge malpractice insurance cost) that essentially is just there to screw up everything. Few people attempt multimillion dollar lawsuits against vets because fluffy died from something that was unpreventable, but that's what happens daily in the US.

As a patient individually, health insurance is great. But as a system is so horridly broken that it slows stuff down.

Also, for anyone reading, getting into Vet school doesn't mean that you're not competitive enough for standard med school; quite the opposite. Getting into vet school is damn hard.

jamesjguthrie• 14 years ago

> Also, for anyone reading, getting into Vet school doesn't mean that you're not competitive enough for standard med school; quite the opposite. Getting into vet school is damn hard.

We were always taught in school that becoming an animal doctor requires better qualifications/grades and is harder than becoming a human doctor - presumably as there is more than 2 anatomies one must become an expert of.

duck• 14 years ago

My great uncle (who is pushing 90) was a vet here in the States, but for the last 50 years has been going to Nepal for six or so months each year to be a regular doctor.

monocle• 14 years ago

The nurse's action in this situation is more a case of not violating his/her scope of practice. "Ice chips" is actually a specific diet order in the hospital. If a patient gets admitted with a diet order of "NPO", the the patient is not allowed to get anything by mouth ("nil per os") which includes ice chips and oral medications.

For the father to expect that the nurse should get his daughter ice chips when she probably had an NPO order is more a sign of his emotional distress during the situation. "I tell her I am the doctor, and I want the patient to have ice chips. I am told I am not the admitting physician and cannot give orders. She ignores my request to show me the location of the ice machine."

Though we all can identify with him in this situation, why would we have any expectation that the nurse would violated his/her scope of practice in this situation? The practice of nursing doesn't allow for writing a patient's orders.

His story is an example of the problem with the process of dying. All of us are dying. The question is when do you stop trying to extend life? Even a senior gastroenterologist could not help make that decision earlier for his daughter. No one - physician, father, family member - wants to bear that responsibility/guilt. We put that decision upon the person who is close to death, but they never really know how close they are. So what is the medical system supposed to do if a decision is never made? Continue will medical care, which is the most expensive at the end of life.

konstruktor• 14 years ago

A part of it is probably the litigation-happy culture in the US itself, the other one is laws that don't seem to include palliative care as an essential and non-negotiable responsibility of any medical profession. Would this be the case, the ambulance driver would be liable for driving a moribund patient to an ER instead of a hospice against a doctor's order.

lostlogin10• 14 years ago

Was the Doc in the ambulance? I thought he was in phone contact? But your point remains. Another unfortunate effect of this is that the rest of the world follows the US. The system here in New Zealand, socializes the costs associated with medical mistakes, paying for costs and lost earning for patients. Our system isn't perfect, far from it. But it gets eroded somewhat by the extremely defensive medicine that is practiced in the US that is trickling in here, leading to higher costs and worse practice. Blood test, scan, rescan, more expensive scan. Oh wait, it's just a cough. More tests doesn't equal better care. Each carries its own risks and has a monetary cost.

jostmey• 14 years ago

An awesome book titled "The lives of a cell" by "Thomas Lewis" delved into the problems of Medicine (among other things) in the later 70s. He was amazingly prescient about the problems that Medicine faces today. He also offered some wonderful solutions for fixing Medicine.

aaronharnly• 14 years ago

Just to note, I think you mean Lewis Thomas, namesake of Princeton's Lewis Thomas Laboratory.

ecliptic• 14 years ago

"The Lives of a Cell" by Lewis Thomas is a tremendous book, pulling back the curtain on biology. Clear, concise and well written, very similar to Feynman with physics.

enduser• 14 years ago

I lost my sister to cancer 9 years ago when she was in her early 20s and I was in my teens. Her experience with the medical system was humiliating, futile, and expensive. My parents have never fully recovered emotionally. It has taken me years to integrate the experience, and I still have ghastly memories of the pains she endured recovering from unnecessary surgeries. When I read something like this i feel how much I would like to see a change. It's only partly a techological change--it is also imporant for us as a people to let go when nothing can be done, not to make things worse out of a need to be seen doing something. Unfortunately when a panicked parent is demanding that something be done to save their child, someone will be willing to do something even if the first person knows that nothing can be done.

When it is my time to die I intend to fully engage with the experience of dying, and not to numb the experience with knife wounds, drugs, and over-stimulating hospitals. Until then I intend every day to live fully, with great sensitivity, and to remember that each day I live is one my sister did not have. There is no entitlement to health or longevity; some things cannot be predicted nor controlled.

guylhem15• 14 years ago

> "it is also imporant for us as a people to let go when nothing can be done, not to make things worse out of a need to be seen doing something"

In the case of cancer, universal care unfortunately seems like running in the opposite direction. Sometimes admitting that nothing can be done is the right thing.

Look at the case description - I wouldn't be surprised if the total bill was at least between 100k and 200k - for 20 days of useless care which ultimately resulted in the patient death.

There are some good economical analysis showing yearly cost that'll make you cry, especially if you consider the alternative uses of that money and how many lives could be saved - say in other countries.

With our current technology, universal healthcare for fighting cancer seems like trying to stop a fire with gasoline.

niels_olson6• 14 years ago

> universal healthcare for fighting cancer seems like trying to stop a fire with gasoline

Tell that to the unemployed dad whom, twenty minutes ago, I directed to take his son to the ENT. He has had a swollen left tonsil for 5 years (last time he saw his pediatrician). Now he presents with 1 day of left ear pain. There's a mass hanging off his ear drum. Cholesteatoma? Unlikely. Maybe bullous myringitis. But at this point this kid's whole left pharynx is suspect and 5 years of infection starts one thinking about scary things.

lubos2• 14 years ago

Universal care is not running in the opposite direction.

I live in a country with universal healthcare.

I have several relatives who were diagnosed with terminal cancer. In this case, the hospital simply told them, the cancer is terminal and they've been given doses of morphine until they passed away. In USA, hospitals are facing conflict of interest. On one hand, they shouldn't be providing unnecessary expensive care but then they wouldn't be making as much money. No hospital should be ever put in this position.

Honestly, I'm shocked at how many people in US are against universal health care.

potatolicious• 14 years ago

This is less of a problem when he patient has been paying into the system his/her entire life, the premiums of which are not subject to profit margins or administrative inefficiencies (as much), and medical care costs less than half of what it does in the USA.

End of life care is surprisingly affordable when the above conditions are met.

gnu8• 14 years ago

> useless care which ultimately resulted in the patient death.

Don't state it as if the hospital care caused the death, it was the cancer. This was a worst case scenario. In many cases that care could have bought the patient months or years to live, which most would agree is worth $100k to $200k when facing death.

Devilboy• 14 years ago

Just so we are clear: You're against universal health care?

petercooper• 14 years ago

Look at the case description - I wouldn't be surprised if the total bill was at least between 100k and 200k - for 20 days of useless care which ultimately resulted in the patient death.

This is exactly why universal health care is a good idea. For each person gaining little from expensive care, there are many who can be saved or get a better quality of life from cheap and relatively minor medical services they otherwise may not feel able or comfortable to pay for.

If you put all of those experiences into one huge melting pot and manage it properly, you get a positive net outcome, as demonstrated by numerous countries.

sethg• 14 years ago

A lot of the discussion in this thread seems to be along the lines of “if universal care is instituted in the US, then it will be ruinously expensive, because doctors will authorize every kind of treatment and the taxpayers will pick up the bill” vs. “no, because when this is done in other countries, the agency that finances health care sets standards for what procedures and drugs they will cover under what circumstances”.

I would like to point out that whether or not universal health care is brought to the US (it’s scheduled to kick in under Obamacare, but if the Republicans win they can effectively kill it), the fee-for-service model of paying doctors will have to go away, because right now that model is one of the things running up the cost of private health insurance here. The insurance companies, faced with rising costs, can either impose more restrictive rules about what they will or will not cover, or they can hike their premiums.

In the former case, they’re doing the same thing that a government agency would do, except that people generally change insurers when they change jobs... meaning that any care that costs money up front but would prevent problems five or ten years down the line is not worth spending money on, because some other insurance company would be picking up the savings.

In the latter case, middle- and upper-class families see more of their paycheck going to insurance, while people who can’t afford the premiums but aren’t poor enough for Medicaid just go without insurance, depend on the emergency room if they really really need something, and risk getting bankrupted by medical bills if a serious condition does appear.

(Which is why Obamacare was passed in the first place.)

tsotha4• 14 years ago

>...it is also imporant for us as a people to let go when nothing can be done, not to make things worse out of a need to be seen doing something.

The problem is you don't know for sure when nothing can be done. A coworker's sister was diagnosed with lung cancer and told the prognosis was grim. Three months, maybe. She considered a palliative treatment only approach, but in the end decided a tiny chance was better than no chance.

The cancer responded well to chemotherapy. Before it relapsed a drug was approved for this particular type of cancer (based on a DNA test). After six years she's still alive and in apparent good health.

Sometimes you get lucky, and the medical interventions do help. Now, the case in the article may be different in the sense that it was clear there was no hope from the very beginning. But that's not normal with cancer.

javajosh2• 14 years ago

Yes, there are cases like this. But consider: what are the odds of misdiagnosis? Is that higher or lower than spontaneous remission? Is that higher or lower than a response to chemotherapy?

I have a sneaking suspicion that the "miracle" recoveries from cancer are simply misdiagnoses. Cancer is often a diagnosis of elimination. This is very easy to get wrong. Lesions are the tell-tale, but it is only inference that links them together. Millions of people have benign lesions that have naught to do with cancer.

And these stories are dangerous to the vast majority of (accurately diagnosed) cancer patients who have metastasized and are looking for miracles. This "slim ray of hope" takes away from them whatever slim shred of hope they had to make peace with death. And making peace with death is a huge quality of life issue for both the patient and their family, an issue which has been almost entirely ignored.

stcredzero2• 14 years ago

> Her experience with the medical system was humiliating, futile, and expensive.

My girlfriend, her father, my sister, and various friends of mine have had such experiences. (Not to say all of the above have died. Just have had Kafka-esque experiences with the US medical system.) There is something about our system that elicits cold authoritarianism in the manner of caregivers. Our system does not incent caregivers to look out for the patient's best interests and the uncanny facsimile of the patient's best interests which is their target (avoiding lawsuits, maximizing profits, shutting down and ensuring obedience of relatives) leaves much to be desired.

dionidium3• 14 years ago

When it is my time to die I intend to fully engage with the experience of dying, and not to numb the experience with knife wounds, drugs, and over-stimulating hospitals.

This strikes me as fairly useless talk. You'll find out how you'll handle the dying process whenever you're actually faced with it.

jtheory8• 14 years ago

It's certainly true that "I intend to" (in the GP comment) can't be the same as "I will".

I strongly disagree that it's useless talk, though.

If you haven't put any thought into the possible ways to respond to life and death decisions, when you find yourself facing them -- quite possible in pain, short on sleep, and flooded with anxiety and emotion -- it's not a good bet you'll be able to make the best choices then.

akg_67• 14 years ago

Very sad and heart-breaking. While reading the story, I couldn't stop imagining myself in his daughter's shoes and wondering "what would I do if I was in her place?"

Would I struggle and suffer in the hopes of living a few months longer or accept the fate and go in peace sooner. This reminded me of discussion with my wife during will preparation about how long should I be kept alive before plug is pulled.

brudgers• 14 years ago

Stage four cancer? These are things I've learned from almost twenty years as a "hospice spouse."

It's probably time to call hospice, not the "We can beat this oncologist." It's probably time to write a living will and a sign the DNR. It's probably time to decide how and where you want to die.

It's most assuredly time to decide how you want to live the rest of your life.

SoftwareMaven• 14 years ago

Not always. I know a guy who has been living with stage four colon cancer for four years who, recently, has seen his tumors contracting for the first time ever.

So while I agree that you need to identify a point where you say, "Let me die in peace", I don't think that point is always the day you've been told you have stage 4 cancer. I'm not sure that the 20 days reference in the article is really time to come to terms with that.

refurb• 14 years ago

This is truly the problem with evidence based medicine. You can say how a given treatment will impact a population (i.e. 1 out of 100 patients with stage 4 colon cancer will survive past 6 months) and say it's not worth it, but when you're talking to a single patient, you don't know what the outcome will be. Maybe the treatment will be in vain or maybe he or she will be the one patient that goes into complete remission.

What do you do then?

gus_massa• 14 years ago

It depends on where the tumors are located. For metastasis brain tumors the life expectancy is approximately one year. http://www.nlm.nih.gov/medlineplus/ency/article/000769.htm

noonespecial• 14 years ago

In the thankfully few times I've had to endure hospitals, I've always been struck by how unbelievable primitive what they're doing actually is. Sure there are some genuine technical miracles (dialasys, pacemakers, etc) but I always get the distinct impression that most of it is window dressing; a kind of theatre to make it seem like they're more in control and much less helpless than they really are.

justinph• 14 years ago

I've come to the same conclusion. "Modern" medicine is just marginal assistance to your body's own healing mechanisms.

majorlazer• 14 years ago

I sometimes begin to think the same way, and then I remember about these:

http://futurity.org/wp-content/uploads/2009/11/oscar-pistori...

http://static.ddmcdn.com/gif/artificial-heart-abiocor-hand.j...

https://www.23andme.com/

http://www.guadalupemed.com/images/xray.jpg

http://www.eyeclinicpc.com/lasik/lasik%20steps1.jpg

http://www.piersondental.com/Portals/22078/images/rootcanal%...

http://www.bismarckfamilydental.com/dental-implants-bismarck...

http://www.nidcd.nih.gov/staticresources/health/images/ear_c...

http://emedtravel.files.wordpress.com/2012/04/brain-mri-1.jp...

And that's just off the top of my head. I think modern medicine has advanced a lot more than we give it credit for. I know a lot of hackers tend to compare other industries to the tech field, and expect everything to advance at a rate like Moore's law, but that just isn't feasible in most fields.

VMG• 14 years ago

Very sad, very scary.

What is the cost-benefit ratio for a routine MRI scan every six months?

niels_olson6• 14 years ago

Whole-body MRI? Several thousand dollars just for the scan. The radiologist's interpretation typically costs as much. We haven't even begun to talk about resultant interventions. Eat less and exercise more is a lot cheaper and more effective.

lostlogin10• 14 years ago

Where I work, about $700 US. It's not a great test, despite excellent radiologists and brand new equipment as whole body imaging is far lower resolution than localized imaging (its about 1500 pixels by 250 in resolution versus 512x512 when just your knee is done using an educated guess).

mdonahoe2• 14 years ago

This.

This is the cure for cancer we need: affordable routine scans.

Though more scans means more results for doctors to analyze. Hopefully algorithms can make that part cheaper too.

tisme2• 14 years ago

No.

Affordable routine scans will result in massive overloading of the health system with unnecessary procedures, and the complications arising from those procedures will kill more people than would have died otherwise from whatever shows up on those scans.

There is no such thing as an intervention without risk, and that starts with the risks associated with general anaesthesia.

Scanning is one thing, interpreting a scan and deciding when and where to intervene is something that does not scale well at our current level of technology. Basically it needs a human to sit down and spend time analysing the scan to make sure that what is there warrants intervention. So even if the scan costs would drop to 0 you'd still have the component of the interpretation to deal with.

The end result of overloading the system like this is that those with symptoms that need care are less likely to receive it or receive it timely, and that those that didn't need the care will suffer from complications.

Knowing when to scan and when not to scan is a crucial ingredient in giving good care.

lostlogin10• 14 years ago

No, not now, maybe in the future (with regards to MRI). Even with breast imaging where MRI provides great results, routine screening is only shown to be helpful in those genetically predisposed to disease. Generating masses of biopsy procedures, untold stress, misdiagnoses, botched procedures etc. The false positive rate for MRI is currently too high in breast imaging for it to be a routine tool, let alone whole body imaging with the pitfalls in the technique.

pja• 14 years ago

No. Many, many people have small, non-malignant cancers growing within us right now. Some people carrying such growths will develop life-threatening cancers, whilst the rest (probably the vast majority) of the population will die of something else at a ripe old age before the growths in question ever become malignant.

Once you start screening everyone, suddenly you have this huge population of growths that you have to biopsy in order to determine whether or not they're malignant or not. Your false-positive rate means that you start giving extremely harmful treatments (chemotherapy is itself mutagenic & can cause cancer!) to individuals who if they'd never have been scanned would have remained blissfully unaware of the harmless growth within them & would have had productive, happy lives.

Routine scans are not cost free: They put a huge diagnostic burden on the system & they inevitably mean that you deliver invasive, potentially harmful treatments to people that don't need them.

sskates3• 14 years ago

I'm surprised there are three responses to this comment, all starting with the word "no". I'm not arguing for scanning irrespective of the cost. I'm saying that if the cost were 0 then you should always scan.

More information should always lead to better decisions and better outcomes. If it's the case that more information leads to worse decisions then it's indicative of a problem in your rule set, not a problem with your information.

Imagine if taking someone's blood pressure was a multi-thousand dollar test that required specialized expertise to interpret, and could easily lead to misdiagnoses of heart problems. Now imagine that we just got the technology to do it cheaply and easily. It wouldn't make anyway sense to be afraid of testing blood pressure- it's just more information that can lead to a more complete picture of a patient's condition. But that's exactly what my sibling comments are arguing for now with MRI scans.

Also see number 7 in a list of ambitious startup ideas: http://paulgraham.com/ambitious.html

Alex3917• 14 years ago

"What is the cost-benefit ratio for a routine MRI scan every six months?"

Should I Be Tested for Cancer?: Maybe Not and Here's Why:

http://www.amazon.com/Should-Be-Tested-Cancer-Maybe/dp/05202...

(I haven't personally read this yet, but it's an entire book about exactly this question, and it's very highly reviewed.)

lostlogin10• 14 years ago

Not a good idea. Unproven as a technique, very expensive, very low resolution when whole body imaging is performed, will miss important stuff, and generate unnecessary biopsy procedures. Population screening is a vastly complicated area - for example, what would a whole body MRI be looking for. Name the process(s) and there will be a better way, even if its a scan of a smaller body site, the results will be vastly superior. Dedicated coils, established imaging protocols etc.

jpiasetz• 14 years ago

I've also considered what the parent asked. What if you diff the image with a previous MRI and just examine area's that differ.

gilgoomesh• 14 years ago

Based on the aggressiveness of the cancer in this story, my (non-medical) guess is that you wouldn't have seen the cancer any earlier unless you scanned every two months. This thing came out of nowhere and came fast.

Even if you did see it... what would you do? Surgery, chemotherapy, radiotherapy... these things don't stop a metastatic cancer this aggressive.

Without a cancer treatment that can stop the progression of an aggressive metastatic cancer within a week or two we are powerless to stop this type of death.

tokenadult• 14 years ago

Steven D. Levitt's father Michael Levitt

http://www.med.umn.edu/gi/faculty/vamc/home.html

http://www.mayoclinic.org/news2009-rst/5207.html

is a medical doctor and academic researcher in medicine at the University of Minnesota. I used to file his grant applications into the office file drawers as a duty of my part-time job while pursuing my undergraduate degree. Michael Levitt is perhaps the world's leading authority on intestinal gas and still has an active research program in diseases of the human bowel. He indeed has seen many patients at a research hospital over the years, the same hospital where my mother worked as a nurse for most of her career.

Dr. Levitt writes in the submitted article, "Overnight admission to the hospital is recommended for 'observation' and rest prior to the trip home. Fifty years of experience have taught me that admission to an academic hospital is not restful. I have stopped counting the patients who want to be discharged to get some rest." I have an immediate family member who was given excellent care at the same academic hospital Dr. Levitt knows so well. My relative is in excellent health now decades after that treatment. But indeed, even with best care, the patient experience at a research hospital is not restful, as world experts on the patient's case vie with medical students and a variety of other health science trainees and practitioners to learn from the patient. When a case is puzzling, as was the case of my relative, research-oriented practitioners are curious about how to understand the case, trying to find established, verified practice to help the patient, and otherwise working "empirically" (an ominous word--to me--used by my relative's main doctor to describe a procedure he attempted when he wasn't sure what to do next) to do whatever they can to help.

As the father of a daughter, I can hardly imagine a rougher kind of news to hear. Another immediate relative lost a fiancee to cancer years ago, and that relative's memories of that time are full of frustration. The various kinds of cancer are still so varied--as mentioned in the article--that there is essentially NIL prospect of ever having a general treatment that will be an effective first-line treatment for most forms of cancer. Instead, there will continue to be surgical treatment for come cancers, a growing variety of chemotherapies for a variety of cancers, in the best luck genome-matched to vulnerable cancer cell strains, and radiation treatment for other cancers.

Ultimately, though, we will all have to learn to die better,

http://zocalopublicsquare.org/thepublicsquare/2011/11/30/how...

because we will all eventually die of something. Meanwhile, if you are a parent, this submission is a reminder to cherish your children while they are here, and if you are a medical researcher, as Michael Levitt is, this is a reminder to continue to strive for better understanding of health and disease, while remembering the patient experience as new tests and treatments are devised.

thrwaway1• 14 years ago

This reminds me of the story of Dr. Ben Carson, a famous neurosurgeon who also teaches oncology at John Hopkins. In 2002, he was diagnosed with prostate cancer and successfully underwent traditional treatment.

However, Dr. Carson has stated publicly, both at conferences and on radio interviews, that he believes he was largely cured by a controversial holistic treatment called glyconutrients.

However, due to legal liabilities on the company's part, they banned all testimonials and would threaten lawsuits to anyone who publicized this information.

20/20 did a story on glyconutrients, disproving them based on glycobiologist Dr. Ronald Schnaar from John Hopkins School of Medicine. Dr. Schnaar said, "All of the sugar building blocks that we need in our body are made from the most common foods we eat."

Contrary to this, Dr. Carson says we do not get these simple sugars from our natural diet and said that his family, his employees and everyone he knows uses glyconutrients with great results.

He said he considered not having traditional surgery but he didn't want others mistakenly following his path to the detriment of their health.

Dr. Carson is not a glycobiologist. However, he is the Director of Pediatric Neurosurgery at John Hopkins and a colleague of Dr. Schanaar. He's been awarded the Presidential Medal of Freedom and had a film made about his life story starring Cuba Gooding Jr.

But none of this information about his alternative cancer treatment is widely known. Not one word on his Wikipedia page (http://en.wikipedia.org/wiki/Ben_Carson) nor on the page about glyconutrients.

It's disappointing there's no unbiased scientific research to explain what is factually true. And it's unbelievable that such a high profile cancer survivor could make these claims with virtually no one knowing.

Dr. Carson's speech http://www.youtube.com/watch?v=ROzftYwJihg

Dr. Carson's Story in the Dallas Weekly http://glyconutrientsarevital.blogspot.com/2006/08/dr-ben-ca...

Related Local News story on Baby Hadley http://www.youtube.com/watch?v=oK3U4mrqslk

guard-of-terra• 14 years ago

As far as I (IANAD) understand, there is no such thing as an universal cure for cancer. If and when we beat cancer, the solution will not present itself as a magic pill.

Therefore for any instance of magic pills (glyconutrients included) we can infer that it won't cure cancer with any reliability. You can have a narrow tool that strikes one kind of cancer and does nothing (or even harms a little) on all others, or we can have something that comforts you a bit but without much statistical outcome.

If you have malignant cells dividing inside you, they would not be easily stopped.

Trying to self-medicate a random cancer with a random magic pill will likely yield no result at all - or maybe only from Placebo effect.

Therefore if you're at earlier stage, your best bet is conventional treatment, and if you're at late stage, it might be better to spend the remaining time wisely.

jaggederest4• 14 years ago

Let me point out the logical flaws in your post:

1. Post hoc, ergo propter hoc - "he tried a controversial holistic treatment, therefore he was cured" - My father was cured of prostate cancer just after he quit smoking. Therefore I advocate quitting smoking as a cure for prostate cancer.

2. Fallacy of the single cause - "he believes he was largely cured by" - it's unlikely that any single cause is responsible for something as large as being successfully treated for cancer. Many prostate cancers are simply left untreated with no harm.

3. Hasty generalization - "his family, his employees, and everyone he knows" - We can know nothing about the effect on the general population from anecdotal evidence.

4. Red herring, subtype appeal to authority - "However, he is the Director of Pediatric Neurosurgery" - entirely irrelevant to prostate cancer treatment.

5. Ad populum, in reverse - "None of this information [...] is widely known" - whether it is widely known or not, it should stand up to scrutiny on it's own.

And of course, my post itself suffers from 'argument from fallacy' - something need not be false just because it is argued for in a fallacious manner.

That said, you can roll your quackery up and take it with you.

lotsofpulp• 14 years ago

Excellent post, saved me the trouble of pointing all of those out!

hollerith• 14 years ago

Good chance that author of parent has a financial interest in the sale glyconutrient supplements.

javajosh2• 14 years ago

>The purpose of this brief chronicle is not to criticize the practice of medicine.

Perhaps that wasn't his purpose, but that was the result. And it is a scathing, justified criticism, especially coming from an experienced doctor.

My father died of lung cancer, and we went through similar experiences with the health care system.

Before claiming that something is not a criticism, we have to ask whether or not we can imagine a better outcome, ask what is getting in the way of that outcome, and then make a change. This could be something small, like moving patients around less, and with less resistance. (The purely informational resistance in medical care is appalling, and this story shows it's real human cost. Electronic patient records is not about assuaging "people who can't be bothered to fill out forms".) Or it could be something huge, like revolutionizing what late-stage cancer patients, and their families, expect, and how they will be treated.

If you get late-stage cancer, the health insurance company should hand you $100,000 in cash, a large supply of morphine that can be easily self-administered, and a ticket to Hawaii. Huge bag of weed optional. The message is clear: you're going to die soon, so make your peace with it. Talk to your family.

My father fought until he fell unconscious, his personality ravaged by whole-brain radiation and chemo, in complete denial. He never got a change to face his sentence with courage, and he never really talked to me before he died.

So yes, the practice of medicine needs to be criticized.

jaggederest4• 14 years ago

I also tend to think that the word 'criticism' is linked with a negative aspect that is undeserved.

Consider a glowing movie review that is thorough and thoughtful - certainly criticism, but in no way negative.

mcmatterson2• 14 years ago

This hits close to home. I came within a hair's breadth of losing my infant daughter to cancer just over a year ago, and a few things come up in my thoughts:

- Not all medical systems are the disaster described here. We elected to move back from the US to our native Canada to undergo treatment, and our experience in ward (pre and post-op as well as on the oncology floor) was a dream (at least given the circumstances). We experienced nothing but exemplary inter-disciplinary cooperation, compassion for the patient (and family) experience, and a professionalism driven by clinical need rather than liti-mitigation. These qualities were exhibited even more strongly during the initial phases of treatment post-discovery, which unfolded along a timeline similar to the one discussed here.

- Academic hospitals are exhausting. My spouse ended up being the real hero in this story (she was still breastfeeding at the time, and only one parent was allowed to overnight in the room). My job was to make sure she and our daughter had recovered enough each day to make it through a night of vitals, endless beeping, and the occasional overnight chemo administration (don't even get me started about that).

- The need for patients and their families to drive the narrative of their hospital experience and be their own champion is critical. I had worked in healthcare for many years before this nightmare began (my old office was at the hospital across the street from her room) and knew the system very, very well. We divided up responsibilities so 'I looked outward, and [my spouse] looked inward', meaning that I spent my time making sure that the relevant referrals happened, that medications were administered on time and on dose, and so on. My wife looked inwards towards our daughter, making sure she was fed, entertained, and comfortable. This setup worked very well for us, and was a likely contributor to our level of care.

- The power of parents to be strong in the face of terrible (often inevitable) odds is truly inspiring. We were lucky enough to know with reasonable certainty fairly early on that we would one day be leaving the hospital and resuming a normal life. Many, many families we met were not so lucky. To see a parent express joy and love in the face of such long and terrible odds is a truly unique experience. I myself am a measurably better parent for having witnessed it.

aculver• 14 years ago

Great thoughts. Very happy for your family that you came through this successfully. Lots to be thankful for there.

So, I've seen a couple of your comments on HN in the past, and just wanted to mention it would be helpful if you had some contact information (e.g. Twitter, URL, etc.) in your HN profile so people can follow-up one-on-one when it makes sense to do so. Unless, of course, you're trying to avoid people. :-)

mcmatterson2• 14 years ago

Heh, I never actually noticed there wasn't anything there (I don't think I've been back to my profile page since I filled it out 866 days ago). Updated; feel free to follow-up as desired :)

spydum• 14 years ago

Can't comment on the Canadian system but I will echo those last two points, they are incredibly important. Great post!

citricsquid• 14 years ago

He described her as a "previously healthy 50 year-old daughter" and then she went from feeling weird to death in a month? I had no idea cancer could be so aggressive, is it 1 in a million that it can be this aggressive (from showing symptoms to death) or is this something common? This would explain why early diagnosis is so emphasised, I still didn't understand how much it could matter.

colmvp• 14 years ago

It's also possible she experienced minor symptoms earlier but ignored them, associating them with aging or random stuff humans endure.

jaggederest4• 14 years ago

Cancer can absolutely be that aggressive, and many of your internal organs don't have the sorts of pain and proprioception sensors we think of from our experience interacting with the world through our skin.

It's possible to have twenty small tumors throughout your body, causing no real issue, and then shortly thereafter they continue growing enough to impinge nerves, blood vessels, airways... And you're suddenly diagnosed with stage IV cancer.

stcredzero2• 14 years ago

> He described her as a "previously healthy 50 year-old daughter" and then she went from feeling weird to death in a month? I had no idea cancer could be so aggressive, is it 1 in a million that it can be this aggressive (from showing symptoms to death) or is this something common?

Up til just a decade ago, certain kinds of pancreatic cancer could kill you in as little as 2 weeks after diagnosis. I wouldn't be surprised if this was still the case. Also, my understanding is that sudden early death from cancer is fairly rare, but yes, it can happen.

tisme2• 14 years ago

I lost a friend (55) to a brain tumour. From initial diagnosis to funeral: 17 days. His last words to me were 'I'm going to fight this thing'. He never stood a chance.

mturmon• 14 years ago

This really can happen. A friend from work went from a small cough that wouldn't go away (treating it with antibiotics) to dead in about two months. Throat cancer, spread everywhere. He was in his mid 40s, vegetarian for years, major math nerd. Just unlucky.

ADent• 14 years ago

A coworkers 50 year old brother (whose wife is a nurse) went the ER on Friday and was dead by Sunday night of cancer.

Looking back there were a few symptoms (like weight loss), but nothing major.

PS Please leave a list of your passwords. They never did get into his computer.

VBprogrammer• 14 years ago

I don't want to de-rail the conversation too much but this line brought home to me one of the most sickening injustices of the civilised world - “When the chemotherapy does not work, you will have to finish the job.”

No one should have to plead with their father to end their life early, this should be a choice that anyone can make without fear of consequence to their loved ones. This should be a well established and regulated part of terminal illness.

velar• 14 years ago

Effective treatment against cancer can be found outside the USA, not inside. Eg: See http://www.lef.org/magazine/mag2012/nov2012_Innovative_Laser...

philwelch3• 14 years ago

My father spent much of his last year of life in hospitals. It was a frustrating experience as well.

As far as the expenses went, he had Medicare in addition to supplemental insurance as a retired Marine. So he paid nothing out of pocket. I can definitely understand how this would add to the frustration of the experience.

A huge problem is that no one is actually in charge of a patient's treatment. The individual doctors were quite good, with maybe one or two exceptions, but there was never enough evidence of actual coordination between them for me to feel very confident. I saw him on a daily basis, but much of my time was spent staying on top of what half a dozen doctors and nurses were doing or planning to do at any given time and keeping everything coordinated. I worry about people who end up in the hospital without anyone else around to watch over them.

Hospitalization can be a very frustrating and disorienting experience, especially for older patients. The thing about hospitalization is that it's essentially a form of captivity. You could write a good psychological horror story that took place in a hospital, and it wouldn't be too far from reality.

Spooky232• 14 years ago

I hate to say it, but hospitals need medical project managers.

My wife had some minor complications after a C-Section. We must have recited our name, address, insurance provider, drug allergies, first pet's name, etc about 250 times during the 8 day stay.

The older nurses rocked. The attending physician was someone we know well and rocked.

Everyone else, from resident down to tech were not to be trusted. An incompetent tech burned my wife's arm by putting a blood pressure cuff wet with bleach. A resident waited until I went to grab breakfast to try to pressure her into a procedure that she didn't want.

wisty2• 14 years ago

> I hate to say it, but hospitals need medical project managers.

They are called GPs, or internal physicians. Dr Cox (Scrubs) is an example. The new name is Hospitalist, I think (actually, there's a push to have this as a distinct specialty, so experienced non-specialists have a better development path). If you didn't have a doctor competently managing your case, it wasn't because no-one was responsible, but the doctor who should have been managing the case wasn't.

platz• 14 years ago

I suffered a mini-panic-attack halfway through reading this, and had put my head on the floor until the nausea passed.

fabiandesimone• 14 years ago

Oh wow, this brought back some painful memories. My mom died of lung cancer 3 years ago (in a third world country)

I can't begin to tell you the things my family and me had to put up with.

lostlogin10• 14 years ago

Your point number one occurred in New Zealand too. And the US is pressuring the NZ government to abandon its very successful drug purchasing agency as part of a free trade agreement. Having one agency purchase drugs for 4 million people creates a fair bit of bargaining power, which US companies do not like.

johnx123-up3• 14 years ago

FWIW, my Indian friend says there's a medicine for cancer in South India with Siddha. When I searched http://en.wikipedia.org/wiki/Siddha_medicine some editors seem to have removed references to cancer from the article.

confluence• 14 years ago

Yeah, because it's complete bullshit. Leave your pseudoscience clap trap away from vulnerable people.

johnx123-up3• 14 years ago

I'll be happy to get more details on your reasoning. Do you have any bad experience with it?

nnq• 14 years ago

Not to be insensitive (I've had a few encounters with cancer myself, from both the p.o.v. of a healthcare professional and from that of a relative/friend of a patient), but WHY is this on the front page of HN?! The story is (unfortunately) very typical and repeats time and time again in all parts of the world... but this type of description really brings no new information to "the anti-cancer game"... I know it touches everybody's emotions and stuff, but is this really the place to have these conversations?

newbie12• 14 years ago

We are all working on the wrong things. How can society not be spending far greater percentages of GDP on health care research? Yet the medical establishment, supported by Congress, operates as a guild that keeps people/innovation out, and the system wastes billions of dollars a year on futile treatments in the last year late in life, instead of finding cures.

sireat• 14 years ago

Selfish question here: can one actually screen reliably for most cancers from age 40 to say 60 and actually do something about it?

That is say, do as complete as possible cancer screening every 3 months?

The worst seem to be the ones like pancreatic cancer, you have a very little chance of catching it before it has spread.

I just want to see my daughters grow up that is all.

gbeeson• 14 years ago

Great read and for myself, someone who is not part of the medical community though who is a father of a daughter, I can imagine the professional and personal frustration that must have been felt. Thanks for the write up - could not have been easy (even clinically) to put together.

When A Daughter Dies

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