This subverts the message a bit, but my grandmother was sent to a hospice to die as comfortably as possible. I was out of state during her treatment up until this point, but when she was being moved to hospice care, I was told to expect her passing very soon. In this case, her doctors really seemed to have run out of good options; she just hadn't responded to treatment. But, after she was moved to hospice care, she began to improve. She actually healed and recovered enough to live a few more years at an assisted living home, well enough to walk the halls (slowly) for quite a while every day, and have her kids visiting all the time.
Why did she recover after she was switched to hospice care? The best explanation I have is that in the hospital, her access to opioids had been limited. Letting a patient have too much can be risky. But in the hospice, where death is regarded as impending, those risks don't matter and she could have as much as she needed to actually be comfortable. And not suffering, not being in pain was maybe what allowed her to begin to heal.
I don't think exactly that her doctors were wrong in believing that her death was imminent and that a hospice was the right place for her. But what if we created a healthcare system where clinging to life is so exhausting for the patient that embracing the inevitability of death is the most healing option?
The important difference between physicians and non-physicians in relation to death is not that doctors understand disease mechanisms.
It is that doctor's are familiar with death.
Ordinary people aren't as familiar with death, and don't have a wide range of responses to it because society hides it and pretends it doesn't exist.
The main place regular people encounter death is on the news as a statistic of war and crime. Then when it visits their family and friends, they are unprepared, except for what they know of death, which is a calamity.
Sitcoms don't include death because they exist to take your mind off work, and provide a platform for advertising consumer goods.
Friends and acquaintances don't often talk about death in expansive terms. They only offer a cliche one liner - sorry for your loss - because that's the only response they've learnt. It's a well intentioned sentiment, and also one that's constrained by a fear of death that is unwarranted.
That's a shame because death is an expansive part of life. It's the point at which a life becomes whole, and we can see someone in their entirety. Death, along with birth, is the context for life.
It's going to happen to all of us, no matter how we try to deny it or hide it. Doctors know this and so they let it in. They do this before life descends into the shadows.
My mom struggled with lung cancer for two terrible years with cutting edge treatment, and died badly. My dad cared for her through that, and when his turn came five years later, he had no doubts. He refused all but palliative care and died in two months. What he saw once, a physician will see over and over ad nauseam. Having seen one of each, I'm not conflicted over which path I'd take.
edit: for the remarkably special downvoters (stay classy HN) - that's the type of lung cancer my mother died from, in about 20 months time. You generally can't surgically remove small cell lung cancer. It was particularly brutal, with endless treatment attempts that were physically grueling and minimally effective. It's a highly aggressive cancer with a very low survival rate and few good treatment options. Accordingly, having watched her go through that, I can very much relate to what the parent said.
The point is you don’t know which path you’ll go down until you go down it.
Look at any cancer drug trial and there is a massive spread in outcomes. Some people take a drug and die with horrible side effects in 2 months, others live 10 years with mild side effects.
What ticks me off no end is the folks who (often successfully) fight against physician assisted suicide. Dementia is the interesting test case, but I think should still be allowed.
With all the talk about 'controlling our bodies' in terms of abortion, and I can see both sides of that one, your own life is the one thing you really own. To have that control taken away is the worst kind of insult by the state.
I think the core problem is giving out a "free pass" to kill people. Very few people (at least in my experience) think that assisted suicide itself is bad, but the abuse potential is massive. And the action is, by definition, irreversible.
Plus, the people that need this are (quite obviously) unable to make this happen on their own. So this comes with the additional moral qualms of whether this is really what the wanted and if their mental state clear enough to make a decision like this.
Lastly, not killing these people is the "safe choice" - you're not getting sued for not killing a person. In the end, it probably boils down to this.
Yeah, I know someone who said for basically their entire adult life "if I ever get like that, just shoot me" and meant it quite seriously. Unfortunately, they indeed spent their last few years gradually degrading in the throes of dementia. Very sad to see, and even more sad to know they would have absolutely hated being left to "rot" in such a way. The only consolation is the person hopefully didn't "know"? Who knows? :\
The problem is the possibility that physician assisted suicide will be abused to clear out people who are costly to treat by gently urging them to take the option, or other similar scenarios like a family urging someone to take the option so they can get early inheritance.
It's one of those things that I might support in idealistic principle but where I develop serious reservations when I factor in how ugly people can be in real life.
There are organisations in the EU that will assist suicide in certain circumstances.
Sir T Pratchett wrote extensively about being on the wrong end of dementia. He didn't have much to say about abortion when he was dealing with cognitive decline.
Especially since current practice when it comes to dementia is waiting till the patient forgets how to swollow food and then let him/her starve to death.
Several of my grandparents spent way too long in ICU and hospice care and ultimately it wasn't worth it. I feel terrible about how their final days went, but other family members were adamant about 'throwing everything they could at it.'
But the family members making that choice weren't footing the bill and they didn't have to lay in bed all day, so why wouldn't they try? I also feel they had a gross misunderstanding of the capabilities of modern medicine.
In each case the doctor's asked, "do you want to give him/her a fighting chance?" Of course, no one wants to say 'no' to that question, because they don't really understand what's possible and don't understand what "winning" actually looks like.
My sister kept fooling with my father's palliative care meds? Why? She claimed it was so he could spend more time with her kids. My father thought he kids were spoiled.
What could be the other reason? Was she naieve? I do know she loved him, but it seemed he needed to do things for her love? She messed with his meds so she could more inheritance. Just American greed.
It's not like she even needed the money. She had two shoe stores in LA, and was a shoe designer.
She got all his cash. She had a lawyer on speed dial according to my brother. My mother got nothing. (We are not a litigious family for the most part.)
She spent part of the money on a Yurt in the backyard of her beautiful home, after a world trip staying in fancy hotels.
She wonders why her brothers, and mother, don't return calls.
One more thing. My father had a huge liver tumor. He had great insurance (Union Cadillac policy). Because modern doctors do not palpitate anymore, he went decade with the tumor. We all knew something didn't look right, but he was told by a doctor it was just scarring from a hernia operation. Not one doctor felt his abdomen, except interns at the hospital. (After the third different intern pushed on his stomach, I said enough. He's not a learning tool for you.)
He left the hospital with an incurable diagnosis. Many specialist looked at him.
This doctor affiliated with the hospital kept dragging my sick father in for appointments. He told him he would operate, after this sanctimonious speech about drinking.
My father was naturally elated.
The doctor called a couple of weeks later, and said he couldn't operrate.
It was all those unnessary office visits that irritated me, along with getting a guy's hope up.
(Sorry about the ramble. I once said, I didn't understand why Steve Jobs didn't use western medicine to cure his Pancreatic tumor. What I didn't know is how low the cure rate of that cancer was. I didn't know what kind of cancer (I hear their are basically two types, and one is somewhat kinda curable. The other is not.). I never should have said anything. When my day comes, I'm using that Right to Die option. I'm glad CA has that now. Oh boy, I am now depressed.)
> In each case the doctor's asked, "do you want to give him/her a fighting chance?" Of course, no one wants to say 'no' to that question, because they don't really understand what's possible and don't understand what "winning" actually looks like.
Right, and people don't generally think to ask those questions because, at that point, they're not in an emotional state that is conducive to stopping and asking questions. That said, the phrase "fighting chance" is absolutely terrible here. It's far too loaded to convey what would actually be meant here.
"But the family members making that choice weren't footing the bill"
That appears to be the crux of the problem: "footing the bill". It may sound counter intuitive but I have found that when cost is removed from the equation, then better decisions may arise or at least a few extra distortions are removed.
When money is directly involved then there are several potential, and in my view damaging, extra approaches that might arise. There's the: "we've spent so much and achieved [something] so let's go all in." Or "we've only spent this much so let's go for gold" Or: "We are paying for this anyway and so let's give it a go".
Health care systems that are funded by taxation ie pre-paid, in my view, escape those problems and encourage end of life scenarios that are more likely to be better (for a given value of better)
I think that I am very lucky to have the UK's NHS to care for me. We pay for it nominally via a second income related tax called "National Insurance" - we also have a country wide "Income Tax". The NI rate is: https://www.gov.uk/national-insurance/how-much-you-pay - nominally 12% but is only levied on the first £x. It gets a bit complicated because employers also pay NI for their employees.
The thing about an organisation like the National Health Service is that if you have one and you get hurt, you get it fixed without thinking about it too much. We do pay quite a lot for it but it works and the cost is not so noticeable compared to Income Tax. My dad had a few heart related snags a few years ago that involved a three week stay in Exeter General, then a helicopter flight to London and a six month stay in the Royal Brompton, mostly in their intensive care unit (ICU) which would have been horrendously expensive. One of the docs described how he massaged my Dad's heart in his hands when the bloody thing decided to get a bit weary of being fiddled with too much.
The UK's NHS is not perfect or anywhere near perfect. It's a whopping great organisation with some good and some not so good staff and some horrendous bureaucracy. That said, I would prefer it to any other medical system. It works eventually and often works surprisingly well and often preemptively. Dad would be dead without it. Dad's GP practice missed a few clues. When his doc went on holiday, a Hospital Registrar (as it turns out) was drafted in to cover. Dad presented and his feet didn't touch the floor until he was in a hospital bed.
Again, I have to emphasise that the UK's NHS is not perfect but I don't worry about what to do if my arm fell off or something. I get to A&E and they fix me up.
I have also been at the far end of palliative care (Mum). Again the NHS did the business and did its best (cancer) but it had to accept defeat. That's when Hospice Care cuts in alongside the NHS. St Margarets were absolutely fantastic.
In the end it is taxation that pays for this thing but the fact that you can forget about money when dealing with health care issues is quite important, I think.
I long ago decided that if I got a terminal disease, I would refuse any treatment that would extend my quantity of life at the expense of my quality of life.
I've seen what chemo does to people. No thank you. If I get cancer, I'll just self-medicate with whatever opioids I can get my hands on until either the cancer kills me or the pain gets bad enough that the opioids stop being able to do anything for it, at which point I'd just intentionally OD by a massive amount while alone in a remote location.
(and on top of all the debilitating, crippling effects of chemo, I am also, for multiple reasons, particularly attached to my hair... it's one of the only parts of my body I like, and I would literally rather die than lose my hair)
Years ago, Charlie, a highly respected orthopaedist and a mentor of mine, found a lump in his stomach. He had a surgeon explore the area, and the diagnosis was pancreatic cancer. This surgeon was one of the best in the country. He had even invented a new procedure for this exact cancer that could triple a patient’s five-year-survival odds – from 5% to 15% – albeit with a poor quality of life.
Charlie was uninterested. He went home the next day, closed his practice, and never set foot in a hospital again. He focused on spending time with family and feeling as good as possible. Several months later, he died at home. He got no chemotherapy, radiation, or surgical treatment. Medicare didn’t spend much on him.
I am guessing that he had testing which determined it had spread and was terminal. It seems implausible that an otherwise healthy person would just pass up on a 15% chance of survival.
With a major bowel surgery? You’re looking colostomy bag combined with a tough recovery. That means pressure sores, painful chemo or radiation, substandard care in rehab, etc. Plus, pancreatic cancer usually comes back in force once you run that gauntlet.
My dad went through some of that post-stroke. No way.
15% for 5 years of unpleasant survival. Basically 0% chance for a “long” “normal” life after that.
My mother (who worked in medicine and was very healthy) was diagnosed with a GBM and had a brief course of radiation to try to shrink it without a ton of luck.
She stopped working and went home and had an OK year then an awful 4 months and then fell out of bed and broke her hip and never woke up.
She could’ve maybe had 2 or 3 pretty bad years if she’d “fought” and was “lucky.”
If it were 15% chance with a good quality of life, I'd take that treatment. But having seen several relatives live through a 'poor quality of life', I would not want that.
If I were given a 15% chance of survival (at best) where the most I could hope for was having a poor quality of life, I wouldn't be interested either. Even it at 2:1 it'd be a tough decision for me.
I'm seeing a lot of people sharing very personal and very difficult anecdotes here, and I am worried that that would make someone decide to reject chemotherapy outright, or recommend a loved one to reject it.
Yes, chemotherapy has very adverse side-effects. But it's also the best course of action we currently have for a lot of cancer patients. It varies depending on the type, grade and stage of the illness, as well as the patient's overall health [1]. It should not be rejected outright.
Now for my personal anecdata: My sister in law was in her 30s when they detected her breast cancer, and got chemo for some time. It was a very difficult time for her, but it worked - the cancer receded. She kept having to do get periodical checks to keep tabs on it.
Unfortunately her cancer came back, and this time it was more aggressive - it resisted all treatments and eventually metastasised. They took her off chemo, but her health deteriorated very quickly anyway. She died 1 and a half years ago, at home.
On average, chemotherapy gave her and my brother around 7 years of life, in exchange of some very shitty quality of life moths due to side effects. They definitively made the right choice in taking chemo the first time, and not taking it the second time. A lot of people's cancers never come back.
I am not saying that chemotherapy is worth it in all cases. I am painfully aware that it isn't. But it is worth in a lot of cases. Don't reject it outright.
PS: I should mention that we live on a country with a civilized health care system where her treatments were paid for by the state's Social Security. No one in this story had to deal with "can we afford this treatment" problems. If you are in that situation, I am sorry for you.
This doctor clearly has a vision for how he feels end of life should be, and then implies all (most) doctors share this and non-doctors should follow and doctors should be more vocal about the implied belief.
I'm a bit warey of his assertion that all doctors think the same way as him though. He relies pretty heavily on his experience and a few anecdotes. I wonder if there is any actual data on how doctors view "futile" care and end of life.
Most of my family are physicians or nurses. They are all of this opinion.
My mom was an ER and ICU RN and NP. She’s to the point where I have a written protocol for when and how I am to call 911 in the event of an emergency for her.
Nobody wants to die, but few who understand want to live in the purgatory between life and death that futile care entails.
It's all ancedotal, but my dad is a doctor and, in talking with him, he agrees with the author and says every other doctor he knows concurs. He is in his 70s and not in the greatest of health (he was in a car accident years ago that seriously led to a decline in his health). He hasn't changed his mind at all as he has gotten older.
As a physician, I think it comes down to circumstance and goals of care. If I was in my forties and had several young children, I'd want everything done to be able to see them again. Even if I knew it was "futile".
This is why palliative care is so important. All of our goals in life are vastly different all the time, even cycling every week.
I once worked with a cardiovascular surgeon who was possibly one of the most brilliant people I'd ever met. His wife was a neurosurgeon, and she was diagnosed with some rare form of brain tumour, and they both knew the prognosis. They ended up selling their little farm and all their cars and equipment, and bought a little float plane to travel the world with for her final years. I believe he passed away shortly after she did, but they got to spend the last of their time together with a very relaxing lifestyle.
I took two psych classes in University. One was "Death and Dying". Perhaps a morbid class to take in your 20s, but it was a full class. The professor happened to be dying herself as she taught it. Very useful and enjoyable. It's one of the few textbooks I've kept since the long-ago graduation. A very useful course to take.
The author implies (by omission) that palliative care results in a peaceful, pain-free death. You can't rely on that!
I wonder how often physicians die as a result of taking a drug such as Nembutal - the drug recommended by Exit International. Civilians can't buy this drug - not even illegally, e.g. on the Dark Web, as far as I can see. But physicians can.
I don't want to get caught. I don't want the kind of "palliative care" that amounts to death-by-dehydration. If I get throat cancer and can't swallow, no amount of pain-killers will make my death pleasant.
I want a stash of Nembutal, so that I can do myself in, if the prospect I'm facing is a nest of wires and tubes or untreatable pain. It's an ethical disgrace that it's illegal for me to manage the end of my own life.
Apparently any relative that accompanies me on the plane to Switzerland risks prosecution for assisting a suicide. So if I want to die quickly and peacefully, I'll have to do that on my own.
The amount of humbug that swirls around this subject makes my head swim.
Wasn’t this one of the things the “death panels” (as so expertly branded by Republicans) were supposed to help with? Helping people on Medicare decide on how they wanted to approach these kind of issues and what they wanted for advanced directives?
Unfortunately so much of this is decided at the last minute as people are terrified or just desperate for any lifeline no matter the consequences. Choices that, had they made them without those immediate pressures they may have made differently and had time to truly think through.
> Wasn’t this one of the things the “death panels” (as so expertly branded by Republicans) were supposed to help with? Helping people on Medicare decide on how they wanted to approach these kind of issues and what they wanted for advanced directives?
No. A death panel does not decide when someone is to die but when treatment is to be stopped due to mounting costs, regardless of the wishes of the patient.
Today's medicine is focused to treat the diseases, refusing to admit that people at 70-80 years old die not from disease, but from the old age.
Everybody but a few enthusiasts refuse to treat ageing instead of cancer or heart diseases. People in general refuse to treat ageing as a disease, thinking it is something natural.
I would not want a couple more miserable years on earth, I want a few million years of a healthy young life.
"Be fine with dying of old age or else you're a villain" is this weird, fundamental, Christian part of our common mythos/ethics/stories. The evil villain seeks immortality. The kindly old witch or wizard or Pope dies peacefully because it is right.
Aging is bad. We might be able to fix it. There are a thousand downsides and challenges that come with a solution to old age, but that doesn't mean leaving aging in place is better.
Dude. Nobody has the slightest idea how to effectively treat "aging". The billionaires that engage in that fantasy might be pushing the state of the art a little bit, sure, but they do it from a starting position of absolute ignorance, and their efforts are mostly in vain.
It's like that old joke about a group of PMs that have "invented the general AI". Now all that's left to do is for some researchers and engineers to create it.
You could achieve more life by reactivating more regeneration, but DNA replication is costly when you do it over and over again, damaging telomeres.[1]
And uncontrolled regeneration can give you tumors [citation needed], so there is no easy path other than your own genetics or having a good lifestyle.
Is it fair to future generations who are yet to be born to write off the possibility of their ever being born because we're selfish and want to live forever? There is some limit to the number of humans we can support on earth, so if everyone is living millions of years (or more realistically let's say hundreds of years) we would have to drastically cut the world's reproduction rates.
Maybe I'm overthinking it, but I feel like that is the classic hubris of mankind to aspire to become gods. We want to control nature and life, yet our limited knowledge prevents us from understanding the ramifications of our actions until it is too late. (Under a White Sky is an interesting read on the subject)
My wife and I feel the exact same way - we have it legalized in our will and in statements of health (I can't remember the legal name for them - but documents about what we want to have happen if we are very sick/near death and can't speak for ourselves). Basically neither of us want anything done for us, at all. Just let us die. Please do not try to prolong things through chemotherapy, intubation, tube feeding, etc.
I don't know how much this still applies, but in the 80s and 90s it also seemed like doctors and nurses smoked a lot more than the average population. Maybe it just seemed that way because you just saw them outside hospitals smoking in groups, but I remember driving by a childrens hospital once, and my father, an ex-smoker, saying they were all out there because they were accustomed to seeing death and weren't afraid of it.
To me, this reveals the Christian roots of modern medicine.
To me, these weeds are to be uprooted: Christians willingly inflict suffering unto others, as they believe it is the natural state of human being and must be increased in servitude of their God, especially near death.
> The differences in charity between secular and religious people are dramatic. Religious people are 25 percentage points more likely than secularists to donate money (91 percent to 66 percent) and 23 points more likely to volunteer time (67 percent to 44 percent).
> In study after study, religious practice is the behavioral variable with the strongest and most consistent association with generous giving. And people with religious motivations don’t give just to faith-based causes—they are also much likelier to give to secular causes than the nonreligious.
> People who are religiously affiliated are more likely to make a charitable donation of any kind, whether to a religious congregation or to another type of charitable organization.
> Religiously affiliated households give as much or more to other types of charities as non-religiously affiliated households do.
From its earliest days, following the edicts of Jesus, Christianity encouraged its devotees to tend the sick. Priests were often also physicians. According to the historian Geoffrey Blainey, while pagan religions seldom offered help to the infirm, the early Christians were willing to nurse the sick and take food to them, notably during the smallpox epidemic of AD 165-180 and the measles outbreak of around AD 250; "In nursing the sick and dying, regardless of religion, the Christians won friends and sympathisers".[6]
Following the First Council of Nicaea in 325 AD, Christianity became the official religion of the Roman Empire, leading to an expansion of the provision of care. Among the earliest were those built ca. 370 by St. Basil the Great, bishop of Caesarea Mazaca in Cappadocia in Asia Minor (modern-day Turkey), by Saint Fabiola in Rome ca. 390, and by the physician-priest Saint Sampson (d. 530) in Constantinople, Called the Basiliad, St. Basil's hospital resembled a city, and included housing for doctors and nurses and separate buildings for various classes of patients.[7] There was a separate section for lepers.[8] Eventually construction of a hospital in every cathedral town was begun.
Christian emphasis on practical charity gave rise to the development of systematic nursing and hospitals after the end of the persecution of the early church.[9] Ancient church leaders like St. Benedict of Nursia (480-547) emphasized medicine as an aid to the provision of hospitality.[10] 12th century Roman Catholic orders like the Dominicans and Carmelites have long lived in religious communities that work for the care of the sick.[11]
Some hospitals maintained libraries and training programs, and doctors compiled their medical and pharmacological studies in manuscripts. Thus in-patient medical care in the sense of what we today consider a hospital, was an invention driven by Christian mercy and Byzantine innovation.[12] Byzantine hospital staff included the Chief Physician (archiatroi), professional nurses (hypourgoi) and orderlies (hyperetai). By the twelfth century, Constantinople had two well-organized hospitals, staffed by doctors who were both male and female. Facilities included systematic treatment procedures and specialized wards for various diseases.[13]
Medieval hospitals in Europe followed a similar pattern to the Byzantine. They were religious communities, with care provided by monks and nuns. (An old French term for hospital is hôtel-Dieu, "hostel of God.") Some were attached to monasteries; others were independent and had their own endowments, usually of property, which provided income for their support. Some hospitals were multi-functional while others were founded for specific purposes such as leper hospitals, or as refuges for the poor, or for pilgrims: not all cared for the sick.
When and where the first hospital was established is a matter of dispute. According to some authorities (e.g. Ratzinger, p. 141), St. Zoticus built one at Constantinople during the reign of Constantine, but this has been denied (cf. Uhlhorn, I, 319). But that the Christians in the East had founded hospitals before Julian the Apostate came to the throne (361) is evident from the letter which that emperor sent to Arsacius, high-priest of Galatia, directing him to establish a xenodochium in each city to be supported out of the public revenues (Soxomen, V, 16). As he plainly declares, his motive was to rival the philanthropic work of the Christians who cared for the pagans as well as for their own. A splendid instance of this comprehensive charity is found in the work of St. Ephraem who, during the plague at Edessa (375), provided 300 beds for the sufferers. But the most famous foundation was that of St. Basil at Cæsarea in Cappadocia (369). This "Basilias", as it was called, took on the dimensions of a city with its regular streets, buildings for different classes of patients, dwellings for physicians and nurses, workshop and industrial schools. St. Gregory of Nazianzus was deeply impressed by the extent and efficiency of this institution which he calls "an easy ascent to heaven" and which he describes enthusiastically (Or. 39, "In laudem Basilii"; Or. fun. "In Basil.", P.G., XXXVI, 578-579).
The book When Breath Became Air by Dr. Paul Kalanithi tells the story of his dying. I found it very liberating to learn more about the process from a trauma expert. I'm also slowly making my way through a more medical book currently called How We Die that outlines the actual body processes of the ways we die. I cannot recommend it highly enough.
The problem with euthanasia is that the certainty of it defies all human survival instincts so it’s psychologically very difficult to press a button that ends our existence. What would be better if you could legally hire a service, while healthy, that would sneak up on you and kill you painlessly if you were in a terrible condition with nothing but pain and misery to look forward to. You could cancel them at anytime, but if you didn’t, they’d bump you off mercilessly when you needed it.
Perhaps we could devise some kind of medical implant to do it. Although no doubt somebody here would offer it as a SaaS that triggered when you failed to renew your subscription.
[+] [-] abeppu|4 years ago|reply
Why did she recover after she was switched to hospice care? The best explanation I have is that in the hospital, her access to opioids had been limited. Letting a patient have too much can be risky. But in the hospice, where death is regarded as impending, those risks don't matter and she could have as much as she needed to actually be comfortable. And not suffering, not being in pain was maybe what allowed her to begin to heal.
I don't think exactly that her doctors were wrong in believing that her death was imminent and that a hospice was the right place for her. But what if we created a healthcare system where clinging to life is so exhausting for the patient that embracing the inevitability of death is the most healing option?
[+] [-] wombatmobile|4 years ago|reply
It is that doctor's are familiar with death.
Ordinary people aren't as familiar with death, and don't have a wide range of responses to it because society hides it and pretends it doesn't exist.
The main place regular people encounter death is on the news as a statistic of war and crime. Then when it visits their family and friends, they are unprepared, except for what they know of death, which is a calamity.
Sitcoms don't include death because they exist to take your mind off work, and provide a platform for advertising consumer goods.
Friends and acquaintances don't often talk about death in expansive terms. They only offer a cliche one liner - sorry for your loss - because that's the only response they've learnt. It's a well intentioned sentiment, and also one that's constrained by a fear of death that is unwarranted.
That's a shame because death is an expansive part of life. It's the point at which a life becomes whole, and we can see someone in their entirety. Death, along with birth, is the context for life.
It's going to happen to all of us, no matter how we try to deny it or hide it. Doctors know this and so they let it in. They do this before life descends into the shadows.
[+] [-] hirundo|4 years ago|reply
[+] [-] WalterBright|4 years ago|reply
Odds of her outcome were something like 5%. She's well aware of how lucky she is.
[+] [-] adventured|4 years ago|reply
edit: for the remarkably special downvoters (stay classy HN) - that's the type of lung cancer my mother died from, in about 20 months time. You generally can't surgically remove small cell lung cancer. It was particularly brutal, with endless treatment attempts that were physically grueling and minimally effective. It's a highly aggressive cancer with a very low survival rate and few good treatment options. Accordingly, having watched her go through that, I can very much relate to what the parent said.
[+] [-] refurb|4 years ago|reply
Look at any cancer drug trial and there is a massive spread in outcomes. Some people take a drug and die with horrible side effects in 2 months, others live 10 years with mild side effects.
[+] [-] drewg123|4 years ago|reply
[+] [-] OneEyedRobot|4 years ago|reply
With all the talk about 'controlling our bodies' in terms of abortion, and I can see both sides of that one, your own life is the one thing you really own. To have that control taken away is the worst kind of insult by the state.
[+] [-] Sebb767|4 years ago|reply
Plus, the people that need this are (quite obviously) unable to make this happen on their own. So this comes with the additional moral qualms of whether this is really what the wanted and if their mental state clear enough to make a decision like this.
Lastly, not killing these people is the "safe choice" - you're not getting sued for not killing a person. In the end, it probably boils down to this.
[+] [-] amatecha|4 years ago|reply
[+] [-] api|4 years ago|reply
It's one of those things that I might support in idealistic principle but where I develop serious reservations when I factor in how ugly people can be in real life.
[+] [-] gerdesj|4 years ago|reply
Sir T Pratchett wrote extensively about being on the wrong end of dementia. He didn't have much to say about abortion when he was dealing with cognitive decline.
[+] [-] scotty79|4 years ago|reply
[+] [-] spaceflunky|4 years ago|reply
But the family members making that choice weren't footing the bill and they didn't have to lay in bed all day, so why wouldn't they try? I also feel they had a gross misunderstanding of the capabilities of modern medicine.
In each case the doctor's asked, "do you want to give him/her a fighting chance?" Of course, no one wants to say 'no' to that question, because they don't really understand what's possible and don't understand what "winning" actually looks like.
[+] [-] hellbannedguy|4 years ago|reply
What could be the other reason? Was she naieve? I do know she loved him, but it seemed he needed to do things for her love? She messed with his meds so she could more inheritance. Just American greed.
It's not like she even needed the money. She had two shoe stores in LA, and was a shoe designer.
She got all his cash. She had a lawyer on speed dial according to my brother. My mother got nothing. (We are not a litigious family for the most part.)
She spent part of the money on a Yurt in the backyard of her beautiful home, after a world trip staying in fancy hotels.
She wonders why her brothers, and mother, don't return calls.
One more thing. My father had a huge liver tumor. He had great insurance (Union Cadillac policy). Because modern doctors do not palpitate anymore, he went decade with the tumor. We all knew something didn't look right, but he was told by a doctor it was just scarring from a hernia operation. Not one doctor felt his abdomen, except interns at the hospital. (After the third different intern pushed on his stomach, I said enough. He's not a learning tool for you.)
He left the hospital with an incurable diagnosis. Many specialist looked at him.
This doctor affiliated with the hospital kept dragging my sick father in for appointments. He told him he would operate, after this sanctimonious speech about drinking.
My father was naturally elated.
The doctor called a couple of weeks later, and said he couldn't operrate.
It was all those unnessary office visits that irritated me, along with getting a guy's hope up.
(Sorry about the ramble. I once said, I didn't understand why Steve Jobs didn't use western medicine to cure his Pancreatic tumor. What I didn't know is how low the cure rate of that cancer was. I didn't know what kind of cancer (I hear their are basically two types, and one is somewhat kinda curable. The other is not.). I never should have said anything. When my day comes, I'm using that Right to Die option. I'm glad CA has that now. Oh boy, I am now depressed.)
[+] [-] actually_a_dog|4 years ago|reply
Right, and people don't generally think to ask those questions because, at that point, they're not in an emotional state that is conducive to stopping and asking questions. That said, the phrase "fighting chance" is absolutely terrible here. It's far too loaded to convey what would actually be meant here.
[+] [-] gerdesj|4 years ago|reply
That appears to be the crux of the problem: "footing the bill". It may sound counter intuitive but I have found that when cost is removed from the equation, then better decisions may arise or at least a few extra distortions are removed.
When money is directly involved then there are several potential, and in my view damaging, extra approaches that might arise. There's the: "we've spent so much and achieved [something] so let's go all in." Or "we've only spent this much so let's go for gold" Or: "We are paying for this anyway and so let's give it a go".
Health care systems that are funded by taxation ie pre-paid, in my view, escape those problems and encourage end of life scenarios that are more likely to be better (for a given value of better)
I think that I am very lucky to have the UK's NHS to care for me. We pay for it nominally via a second income related tax called "National Insurance" - we also have a country wide "Income Tax". The NI rate is: https://www.gov.uk/national-insurance/how-much-you-pay - nominally 12% but is only levied on the first £x. It gets a bit complicated because employers also pay NI for their employees.
The thing about an organisation like the National Health Service is that if you have one and you get hurt, you get it fixed without thinking about it too much. We do pay quite a lot for it but it works and the cost is not so noticeable compared to Income Tax. My dad had a few heart related snags a few years ago that involved a three week stay in Exeter General, then a helicopter flight to London and a six month stay in the Royal Brompton, mostly in their intensive care unit (ICU) which would have been horrendously expensive. One of the docs described how he massaged my Dad's heart in his hands when the bloody thing decided to get a bit weary of being fiddled with too much.
The UK's NHS is not perfect or anywhere near perfect. It's a whopping great organisation with some good and some not so good staff and some horrendous bureaucracy. That said, I would prefer it to any other medical system. It works eventually and often works surprisingly well and often preemptively. Dad would be dead without it. Dad's GP practice missed a few clues. When his doc went on holiday, a Hospital Registrar (as it turns out) was drafted in to cover. Dad presented and his feet didn't touch the floor until he was in a hospital bed.
Again, I have to emphasise that the UK's NHS is not perfect but I don't worry about what to do if my arm fell off or something. I get to A&E and they fix me up.
I have also been at the far end of palliative care (Mum). Again the NHS did the business and did its best (cancer) but it had to accept defeat. That's when Hospice Care cuts in alongside the NHS. St Margarets were absolutely fantastic.
In the end it is taxation that pays for this thing but the fact that you can forget about money when dealing with health care issues is quite important, I think.
[+] [-] jerlam|4 years ago|reply
https://news.ycombinator.com/item?id=3313570 (2011)
https://news.ycombinator.com/item?id=5104430 (2013)
https://news.ycombinator.com/item?id=9260286 (2015)
https://news.ycombinator.com/item?id=13122408 (2016)
[+] [-] amyjess|4 years ago|reply
I've seen what chemo does to people. No thank you. If I get cancer, I'll just self-medicate with whatever opioids I can get my hands on until either the cancer kills me or the pain gets bad enough that the opioids stop being able to do anything for it, at which point I'd just intentionally OD by a massive amount while alone in a remote location.
(and on top of all the debilitating, crippling effects of chemo, I am also, for multiple reasons, particularly attached to my hair... it's one of the only parts of my body I like, and I would literally rather die than lose my hair)
[+] [-] paulpauper|4 years ago|reply
Charlie was uninterested. He went home the next day, closed his practice, and never set foot in a hospital again. He focused on spending time with family and feeling as good as possible. Several months later, he died at home. He got no chemotherapy, radiation, or surgical treatment. Medicare didn’t spend much on him.
I am guessing that he had testing which determined it had spread and was terminal. It seems implausible that an otherwise healthy person would just pass up on a 15% chance of survival.
[+] [-] Spooky23|4 years ago|reply
My dad went through some of that post-stroke. No way.
[+] [-] moritonal|4 years ago|reply
[+] [-] paulcole|4 years ago|reply
My mother (who worked in medicine and was very healthy) was diagnosed with a GBM and had a brief course of radiation to try to shrink it without a ton of luck.
She stopped working and went home and had an OK year then an awful 4 months and then fell out of bed and broke her hip and never woke up.
She could’ve maybe had 2 or 3 pretty bad years if she’d “fought” and was “lucky.”
[+] [-] Johnny555|4 years ago|reply
[+] [-] robbyking|4 years ago|reply
[+] [-] otikik|4 years ago|reply
Yes, chemotherapy has very adverse side-effects. But it's also the best course of action we currently have for a lot of cancer patients. It varies depending on the type, grade and stage of the illness, as well as the patient's overall health [1]. It should not be rejected outright.
Now for my personal anecdata: My sister in law was in her 30s when they detected her breast cancer, and got chemo for some time. It was a very difficult time for her, but it worked - the cancer receded. She kept having to do get periodical checks to keep tabs on it.
Unfortunately her cancer came back, and this time it was more aggressive - it resisted all treatments and eventually metastasised. They took her off chemo, but her health deteriorated very quickly anyway. She died 1 and a half years ago, at home.
On average, chemotherapy gave her and my brother around 7 years of life, in exchange of some very shitty quality of life moths due to side effects. They definitively made the right choice in taking chemo the first time, and not taking it the second time. A lot of people's cancers never come back.
I am not saying that chemotherapy is worth it in all cases. I am painfully aware that it isn't. But it is worth in a lot of cases. Don't reject it outright.
PS: I should mention that we live on a country with a civilized health care system where her treatments were paid for by the state's Social Security. No one in this story had to deal with "can we afford this treatment" problems. If you are in that situation, I am sorry for you.
[1] https://www.medicalnewstoday.com/articles/326031
[+] [-] advisedwang|4 years ago|reply
I'm a bit warey of his assertion that all doctors think the same way as him though. He relies pretty heavily on his experience and a few anecdotes. I wonder if there is any actual data on how doctors view "futile" care and end of life.
[+] [-] jt2190|4 years ago|reply
“Most physicians would forgo aggressive treatment for themselves at the end of life, study finds” https://med.stanford.edu/news/all-news/2014/05/most-physicia...
[+] [-] Spooky23|4 years ago|reply
My mom was an ER and ICU RN and NP. She’s to the point where I have a written protocol for when and how I am to call 911 in the event of an emergency for her.
Nobody wants to die, but few who understand want to live in the purgatory between life and death that futile care entails.
[+] [-] irrational|4 years ago|reply
[+] [-] husarcik|4 years ago|reply
This is why palliative care is so important. All of our goals in life are vastly different all the time, even cycling every week.
[+] [-] King-Aaron|4 years ago|reply
[+] [-] drdeadringer|4 years ago|reply
[+] [-] denton-scratch|4 years ago|reply
I wonder how often physicians die as a result of taking a drug such as Nembutal - the drug recommended by Exit International. Civilians can't buy this drug - not even illegally, e.g. on the Dark Web, as far as I can see. But physicians can.
I don't want to get caught. I don't want the kind of "palliative care" that amounts to death-by-dehydration. If I get throat cancer and can't swallow, no amount of pain-killers will make my death pleasant.
I want a stash of Nembutal, so that I can do myself in, if the prospect I'm facing is a nest of wires and tubes or untreatable pain. It's an ethical disgrace that it's illegal for me to manage the end of my own life.
Apparently any relative that accompanies me on the plane to Switzerland risks prosecution for assisting a suicide. So if I want to die quickly and peacefully, I'll have to do that on my own.
The amount of humbug that swirls around this subject makes my head swim.
[+] [-] MBCook|4 years ago|reply
Unfortunately so much of this is decided at the last minute as people are terrified or just desperate for any lifeline no matter the consequences. Choices that, had they made them without those immediate pressures they may have made differently and had time to truly think through.
[+] [-] IncRnd|4 years ago|reply
No. A death panel does not decide when someone is to die but when treatment is to be stopped due to mounting costs, regardless of the wishes of the patient.
[+] [-] pochekailov|4 years ago|reply
Everybody but a few enthusiasts refuse to treat ageing instead of cancer or heart diseases. People in general refuse to treat ageing as a disease, thinking it is something natural.
I would not want a couple more miserable years on earth, I want a few million years of a healthy young life.
[+] [-] CobrastanJorji|4 years ago|reply
"Be fine with dying of old age or else you're a villain" is this weird, fundamental, Christian part of our common mythos/ethics/stories. The evil villain seeks immortality. The kindly old witch or wizard or Pope dies peacefully because it is right.
Aging is bad. We might be able to fix it. There are a thousand downsides and challenges that come with a solution to old age, but that doesn't mean leaving aging in place is better.
[+] [-] H8crilA|4 years ago|reply
It's like that old joke about a group of PMs that have "invented the general AI". Now all that's left to do is for some researchers and engineers to create it.
[+] [-] huachimingo|4 years ago|reply
And uncontrolled regeneration can give you tumors [citation needed], so there is no easy path other than your own genetics or having a good lifestyle.
[1] https://en.wikipedia.org/wiki/Telomere
Even rivers and stars have an end...
[+] [-] dinkleberg|4 years ago|reply
Maybe I'm overthinking it, but I feel like that is the classic hubris of mankind to aspire to become gods. We want to control nature and life, yet our limited knowledge prevents us from understanding the ramifications of our actions until it is too late. (Under a White Sky is an interesting read on the subject)
[+] [-] SV_BubbleTime|4 years ago|reply
Aging is not natural? I certainly understand why someone would not consider it a disorder.
> I want a few million years of a healthy young life.
I would avoid literal genies if I were you.
[+] [-] irrational|4 years ago|reply
[+] [-] noduerme|4 years ago|reply
[+] [-] eurasiantiger|4 years ago|reply
To me, these weeds are to be uprooted: Christians willingly inflict suffering unto others, as they believe it is the natural state of human being and must be increased in servitude of their God, especially near death.
[+] [-] alentist|4 years ago|reply
https://www.hoover.org/research/religious-faith-and-charitab...
> The differences in charity between secular and religious people are dramatic. Religious people are 25 percentage points more likely than secularists to donate money (91 percent to 66 percent) and 23 points more likely to volunteer time (67 percent to 44 percent).
https://www.philanthropyroundtable.org/philanthropy-magazine...
> In study after study, religious practice is the behavioral variable with the strongest and most consistent association with generous giving. And people with religious motivations don’t give just to faith-based causes—they are also much likelier to give to secular causes than the nonreligious.
https://givingusa.org/just-released-giving-usa-special-repor...
> People who are religiously affiliated are more likely to make a charitable donation of any kind, whether to a religious congregation or to another type of charitable organization.
> Religiously affiliated households give as much or more to other types of charities as non-religiously affiliated households do.
[+] [-] alentist|4 years ago|reply
Following the First Council of Nicaea in 325 AD, Christianity became the official religion of the Roman Empire, leading to an expansion of the provision of care. Among the earliest were those built ca. 370 by St. Basil the Great, bishop of Caesarea Mazaca in Cappadocia in Asia Minor (modern-day Turkey), by Saint Fabiola in Rome ca. 390, and by the physician-priest Saint Sampson (d. 530) in Constantinople, Called the Basiliad, St. Basil's hospital resembled a city, and included housing for doctors and nurses and separate buildings for various classes of patients.[7] There was a separate section for lepers.[8] Eventually construction of a hospital in every cathedral town was begun.
Christian emphasis on practical charity gave rise to the development of systematic nursing and hospitals after the end of the persecution of the early church.[9] Ancient church leaders like St. Benedict of Nursia (480-547) emphasized medicine as an aid to the provision of hospitality.[10] 12th century Roman Catholic orders like the Dominicans and Carmelites have long lived in religious communities that work for the care of the sick.[11]
Some hospitals maintained libraries and training programs, and doctors compiled their medical and pharmacological studies in manuscripts. Thus in-patient medical care in the sense of what we today consider a hospital, was an invention driven by Christian mercy and Byzantine innovation.[12] Byzantine hospital staff included the Chief Physician (archiatroi), professional nurses (hypourgoi) and orderlies (hyperetai). By the twelfth century, Constantinople had two well-organized hospitals, staffed by doctors who were both male and female. Facilities included systematic treatment procedures and specialized wards for various diseases.[13]
Medieval hospitals in Europe followed a similar pattern to the Byzantine. They were religious communities, with care provided by monks and nuns. (An old French term for hospital is hôtel-Dieu, "hostel of God.") Some were attached to monasteries; others were independent and had their own endowments, usually of property, which provided income for their support. Some hospitals were multi-functional while others were founded for specific purposes such as leper hospitals, or as refuges for the poor, or for pilgrims: not all cared for the sick.
When and where the first hospital was established is a matter of dispute. According to some authorities (e.g. Ratzinger, p. 141), St. Zoticus built one at Constantinople during the reign of Constantine, but this has been denied (cf. Uhlhorn, I, 319). But that the Christians in the East had founded hospitals before Julian the Apostate came to the throne (361) is evident from the letter which that emperor sent to Arsacius, high-priest of Galatia, directing him to establish a xenodochium in each city to be supported out of the public revenues (Soxomen, V, 16). As he plainly declares, his motive was to rival the philanthropic work of the Christians who cared for the pagans as well as for their own. A splendid instance of this comprehensive charity is found in the work of St. Ephraem who, during the plague at Edessa (375), provided 300 beds for the sufferers. But the most famous foundation was that of St. Basil at Cæsarea in Cappadocia (369). This "Basilias", as it was called, took on the dimensions of a city with its regular streets, buildings for different classes of patients, dwellings for physicians and nurses, workshop and industrial schools. St. Gregory of Nazianzus was deeply impressed by the extent and efficiency of this institution which he calls "an easy ascent to heaven" and which he describes enthusiastically (Or. 39, "In laudem Basilii"; Or. fun. "In Basil.", P.G., XXXVI, 578-579).
https://en.wikipedia.org/wiki/History_of_nursing
[+] [-] telesilla|4 years ago|reply
https://www.goodreads.com/book/show/49286.How_We_Die
[+] [-] spoonjim|4 years ago|reply
[+] [-] tonyedgecombe|4 years ago|reply