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January 24, 2014 6:55 PM   Subscribe

The pedestrian truth that you live one day at a time didn’t help: What was I supposed to do with that day? My oncologist would say only: “I can’t tell you a time. You’ve got to find what matters most to you.” —neurosurgeon Paul Kalanithi on coming face to face with his own mortality. SLNYT.
posted by Athanassiel (29 comments total) 28 users marked this as a favorite

 
If my doctor refused to give me information they held on my terminal illness, I'd be royally pissed they were deciding what information I could not have about my own body.
posted by zippy at 7:35 PM on January 24 [2 favorites]


That was an amazing piece of medical writing, even if was (unfortunately) the writer-patient doing it. Thanks for posting. But, yes, he captures so much of the uncertainty of medicine and how it affects the living.

An attending in medical school told me, "You never say "never" or "always" in medicine." And, yes, you never know.

In a piece reflective on his own mortality he addresses:

1. Advancing protocols in medicine and how it affects functional status of people thought to be "terminally ill"

2. He talks about how, at least to oncology specialists, the part of the life-curves and predicted surviving they look at are the 1-5% that might make it through the odds. Every oncologist wants their patient to be that person, that why, zippy, you might not get straight answers from them.

3. He beautifully finds solace in all the uncertainty. If the only thing to know is that we might not know....stop worrying about it.

4. He addresses something indirectly. The guy is 36! He deserves every experimental treatment, expensive drug, etc, etc. we have. From a moral and economic standpoint much of his life is left to live. He talks about how the whole decision might change for the elderly. If say even an 80 yr old had this diagnosis, should he get similar treatment? (Who knows). Does he get it (in America, yes, more often than not). Too often lay-community medical people like me look at such studies and pile all patients in together.

5. Despite his very high level of training and handling complex brain disease, Dr. Kalanithi seems very normal/human in how he is dealing with the problem.

But, yes, the advice from his doctor is best. Stop worrying about how long, just do what's right.

Another section is worth quoting,

"What patients seek is not scientific knowledge doctors hide, but existential authenticity each must find on her own. Getting too deep into statistics is like trying to quench a thirst with salty water. The angst of facing mortality has no remedy in probability"

That's what divides the geniuses like him from just smart people like me. I've felt that sentiment but would never have been able to phrase it so well in many, many years.

I work in the ICU and see patients, usually, at the end. The mortality statistics I give them have a physiologic precision and accuracy to them. But, yes, the above is so true....What's the probability matter? We are dying, let's hope that's if it's either a higher entity or uncaring, chaotic arbitrariness that guides our existence here, we find our peace about that.
posted by skepticallypleased at 8:02 PM on January 24 [17 favorites]


The thing is, when a patient knows they're not getting the full story, then the withheld information is all that matters to them. Even this very well-informed doctor couldn't rest until he had seen all the statistics and found, for himself, that the statistics didn't have the answer. It doesn't matter how many experts tell you that the research can't predict the course of your own individual journey; it's not until you comb through that research yourself that you can really be sure that the answer isn't in there.

I think withholding this opportunity from patients who want it is a shame, because it makes them feel like their doctor isn't trustworthy and isn't on their side. It makes them obsess over something that doesn't matter in the end. Give people the information so they can stop worrying about the missing information and instead get on with their living and their grieving and everything else they need to do.
posted by vytae at 8:37 PM on January 24 [6 favorites]


If my doctor refused to give me information they held on my terminal illness, I'd be royally pissed they were deciding what information I could not have about my own body.

But what doctor has the information of exactly how much longer you can expect to live? The statistics will never answer that question, and giving you all the research out there on a particular topic will not answer that question for you. As Kalanithi says in the article, "Faced with mortality, scientific knowledge can provide only an ounce of certainty: Yes, you will die. But one wants a full pound of certainty, and that is not on offer."
posted by Athanassiel at 8:37 PM on January 24 [5 favorites]


This was a great op-ed and nailed the uncertainty that comes with severe medical issues.

Oh, Obligatory relevant XKCD.

He talks about how the whole decision might change for the elderly. If say even an 80 yr old had this diagnosis, should he get similar treatment? (Who knows).

I do: He should not. We need to stop shoveling 90% of your lifetime medical expenses into the last 6 months of your life. We're spending all those resources (which are finite and could be used on many others) to give people an often excruciating and terrible few weeks or months.
posted by Justinian at 8:53 PM on January 24 [10 favorites]


But what doctor has the information of exactly how much longer you can expect to live?

I wouldn't expect that answer. I know it's impossible.

I'd just want to know: "doc, you're already giving me a range (e.g. "weeks to months," "months to years"), what are you basing that on so that I, the patient, can make some informed decisions about treatment, quality of life, et cetera."
posted by zippy at 8:57 PM on January 24 [2 favorites]


Ok, fair enough. I would want to know that too!
posted by Athanassiel at 9:03 PM on January 24


National Survey: Ob.Gyn. Residents Score Low on Statistical Literacy

doctors are humans not gods
posted by bukvich at 10:30 PM on January 24 [1 favorite]


That was a very well written piece, thanks for linking it.
posted by smoke at 10:40 PM on January 24


I think he may have started writing the book.
posted by Segundus at 1:37 AM on January 25


Two things:
Isn't it partly that by plumping for some middle-of-the-likely-outcomes time limit, many patients obligingly die-to-order & hence it's not such a great idea?

Recent terminal illness in my home: yes we wanted to know in order to make plans, and to be sure, we had some sort of ballpark idea. But as far as spending a lot of energy and time looking things up and worrying about it - we had a kind of unspoken pact that We Had People To Do That For Us. Now, that won't work for everyone, and I'm sure that the treatment and care were imperfect. But it was okay, after all, that it was the treatment people in this situation generally get. Perhaps there were extra bits and pieces that could have been tried. But I'm not sure that they would have helped, and I know for sure that they would have created a lot more stress and disappointment; I don't think it was ever sufficiently clear that any experimental or additional approaches would have survived this sort of stress/benefit analysis to try for it. As for me, I'm not constantly on-track with this line of thinking. I do have times where I think I should have got all Lorenzo's Oil about it all. But, look, I'm not going to make better decisions than the experts in the end. I completely understand folks' response that they would be very pissed off that there was information they weren't getting. For us, though, I think that was set in a context where we had a job to do and the medics had a job to do and we sort of split the tasks up. Call it realism, or call it fatalism, or call it cowardice or laziness; we decided to just do what was in front of us. I think a lot of people would understand that. "Thy present opinion founded on understanding, and thy present conduct directed to social good, and thy present disposition of contentment with everything which happens—that is enough."
posted by aesop at 3:12 AM on January 25 [4 favorites]


We need to stop shoveling 90% of your lifetime medical expenses into the last 6 months of your life

Easy to say (based on stats) but impossible to enact ethically, socially or even economically.

At the start of your expensive treatment as an 80 year old, nobody knows for sure that is going to be the last 6 months of your life. It could be your last 15 years. That's the whole point.

15 years is a lot of time to see your grandchildren, watch some great movies, comment on a few blogs. Come to think of it, so is 6 months actually. If it takes 90 percent of my 'lifetime medical expenses' (whatever that actually means in practice), then I reckon the state should pony up, seeing as I paid them my taxes dutifully for the last 62 years.

Added to which, rationing healthcare for the aged like this immediately impacts one group in society - the poor. It is already statistically the case that in the UK, if you are well-off, you'll live longer when you get that diagnosis as an 80 year old than one of the poors.
posted by colie at 5:07 AM on January 25 [6 favorites]


The thing is, we all live under that hammer: you just don't really know how many ticks you have left on your clock. Cancer patients are reminded of this the hard way. Nobody likes to be rushed, and many of us put off things (we'd like to do) with the idea that we'll get around to them sooner later. It doesn't occur to most of us until the windows of opportunities close to distinguish between climbing Mt. Everest and hugging our grandkids, if you see what I mean.

Also, with cancers of most sorts, all stats are out of date. This is one of the rare areas where the admonition to hang in there sometimes bears sweet fruit. My particular cancer is only a few steps short of being treatable by inoculation. True, those steps may as well be yawning gaps for those of us with multiple myeloma now. But I've survived ten years after my basic chemo. When I went into treatment, ten-year myeloma survivors were statistically insignificant. If my remission fails before geriatric issues overtake me, then my next phase of treatment will be much less severe than it would have been a decade ago.

Anyhow, it's a shame that money has to be in the medical decision boxes.

The basic issue for most of us is whether our bodies can withstand the treatment options. That doesn't have a direct link to our age, but the fact is that most of us old farts are not as strong as we once were, so some treatments are factored out because of our frailty. Quality of life issues are not age-related in that absolute sense, but rather the ability of our old bodies to handle the treatment.

So, do stop to take a sniff of the roses now and then. If nothing else, it will give you something to remember while sitting on the sun-porch in your wheelchair. Don't wait until you actually see the elephant to come to grips with your mortality.
posted by mule98J at 11:02 AM on January 25 [8 favorites]


At the start of your expensive treatment as an 80 year old, nobody knows for sure that is going to be the last 6 months of your life. It could be your last 15 years. That's the whole point.

But you don't need to know that to make a statistical determination of whether a treatment is hugely cost effective or hugely non-cost-effective.

There are costs either way. If you spend millions of dollars treating an extremely elderly person with very little chance of survival you're taking that money away from treating kids, and the poor, and so on. It's not a question of "spend this money on this 80 year old or let them die" it's "spend this money on this 80 year old and let four 12 year olds die". And so on.
posted by Justinian at 11:37 AM on January 25


Ridiculous. There is plenty of money to give older people the treatment they deserve without death panels sending 12 years olds to their doom.
posted by colie at 11:54 AM on January 25 [4 favorites]


It's not a question of "spend this money on this 80 year old or let them die" it's "spend this money on this 80 year old and let four 12 year olds die". And so on.

It's not nearly this simple, of course. How about spending less on [so many options to choose from] or revamping the tax code so that large corporations and/or incredibly wealthy individuals contribute more to the general welfare of the population?
posted by she's not there at 12:48 PM on January 25 [1 favorite]


Thank you for linking to this.
posted by seyirci at 1:42 PM on January 25


It's not nearly this simple, of course. How about spending less on [so many options to choose from] or revamping the tax code so that large corporations and/or incredibly wealthy individuals contribute more to the general welfare of the population?

But as good as those things would be and as much as it would improve the social safety net, it simply increases the amount of spending available for healthcare and says nothing about how you apportion that spending. Whether you spend 50 billion or 500 billion or 5 trillion you have to come up with a way to ration treatment because barring magic future technology there will never be enough money to give every single person every single treatment. Right now we mostly ration treatment by ability to pay. That is one way to do it. If you're elderly and well off you can spend a fortune wringing the last few seconds of miserable life out of the healthcare system. If you're poor and middle aged or even young you often get mediocre (or no) care which can cost years or decades of healthy lifespan.

So, yeah, we can keep doing it that way. But it isn't in my opinion the best way or even a particularly moral one.

There are always choices about who gets what treatment and who doesn't. Spending millions of dollars on 85 year old stage IV cancer patients who have a 2% of living out the year even with treatment is not a good use of money which could instead be spent on a far greater number of poor kids with diabetes. Or preventing them from getting diabetes in the first place. Or building schools. Or repairing bridges. And so on.

I'm not saying that it isn't a tough choice to have to make but it is possible to prioritize and we should talk about it openly instead of pretending we don't already make similar choices all the time.
posted by Justinian at 4:29 PM on January 25


There is plenty of money to give older people the treatment they deserve without death panels sending 12 years olds to their doom.

Hah! I see what you did there. "the treatment they deserve" indeed.

You are assuming your conclusion since I'm arguing that spending every last possible dime to try to wrest a few more ugly and painful days of existence is not, in fact, the treatment people deserve.
posted by Justinian at 4:33 PM on January 25 [2 favorites]


We are not yet and are never going to be in a position of letting sick children go without medical care in order to give some old person "a few more ugly and painful days of existence." In today's vernacular, WTF?

You went way over the top, Justinian, when you mentioned building schools and repair bridges rather than treating "85-year-old Stage IV cancer patients."

What about 60-year- patients with the same disease? Or 50-year-old ones? 45? 35?

How about patients your age?

I hate to tell you this, but your opinions on this will change with time - seriously.

My sister died of diabetes when she was 27; it first attacked her when she was 12. Nothing is much worse than brittle Type 1 diabetes - it's just like cancer, really. When she died, she was blind, was on dialysis, had been having strokes and minor heart attacks for years, had amputations, and I don't know what else. I agree, and fervently fight for, juvenile diabetes to get the same kind of attention that children's cancer gets. And Justinian, there have been major improvements in the treatment of T1DM in the last 30 years.

The problem isn't that old people are taking all the money for medical care (please remember that old people have been contributing money for that purpose for over 50 years) - the problem is that the money for medical care is being used up by administrative and insurance costs in lieu of paying for medical care of the sick. That's where you need to put your energies instead of blaming old people for still being alive.
posted by aryma at 7:02 PM on January 25 [6 favorites]


This is the best essay I've read in a while and it deserves better than a rehash of the health care debate.

I think the article is powerful partly because once we realize our mortality we all have the same question. What do I do with the time i have left? None of us know how long we have. Most of us have to balance carpe diem against saving for retirement, not knowing if we will even make it that far.

I'm reminded of Ikiru, particularly the simultaneously hilarious and heartbreaking diagnosis scene. Also the end of Blade Runner: "It's a pity she won't live, but then again who does?"
posted by nixt at 8:00 PM on January 25 [3 favorites]


I hate to tell you this, but your opinions on this will change with time - seriously.

You're assuming they have not already changed.

The basic facts aren't complicated: The resources available for medical care are finite. You can tax people more (and we should), you can reduce insurance costs (although you may be overestimating the fraction of insurance premiums devoted to overhead), and you can make medicine more efficient but that just changes the calculus on how many resources we have to allocate, not the fact that we have to allocate them in some fashion.

What facts are in dispute here? That resources are finite? That if you spend money in one place it is no longer available to spend somewhere else?

Medical expenses aren't somehow exempt from reality. Every dollar spent in one place is a dollar not spent somewhere else and increasing the size of the pot you're spending doesn't change that. It seems weird that this is controversial. And Until we can have an actual discussion about the cost/benefit analysis of end-of-life treatments without people yelling DEATH PANELS AHHHH we're never going to get anywhere.
posted by Justinian at 10:56 PM on January 25


They might be fair, I don’t know -- and certainly at least some people are charged with making difficult decisions (I wouldn't like to be one) -- but utilitarian analyses are not an intuitive way for people to reason about human value. We’ve seen the warping effects of at least some systems pretending to be guided by rationality. You’re right that we already make judgements about classes of people whenever we support inequality, as we almost inevitably do. But any system or calculation that resists accident, sympathy, improvisation, challenge, is abhorrent.

You can't freeze things for long anyway, technologies and treatments change. However, if you set up a system that explicitly denies the inherent worth of a whole sector of society -- because you're not talking strictly about end of life, which could happen at any age, you're talking about older people -- it might be that there's less incentive to bother about developing ways to care for them.

We’ve done a good job expanding our life span. But very soon, quite a lot of people are going to be spending quite a lot of their ‘extra’ years in poor health, all at the same time. You’re suggesting we just cart them away? Maybe it would have been fairer to deny them treatment at 50, and prevented the whole mess of them living too long. Those decisions might have been based on as much of a lottery (e.g., genes) as wealth (in addition to the lottery of wealth; a 50-year old winner is likely to be healthier than a 50-year-old loser).
posted by cotton dress sock at 1:21 AM on January 26


Justinian, it's pretty rich of you to criticise my language (specifically 'treatment they deserve' - a phrase I used largely due to the elderly having paid taxes for half a century), when you have contributed stuff like 'wringing the last few seconds of miserable life' and 'spending every last possible dime to try to wrest a few more ugly and painful days of existence'.

It's completely hyperbolic language that suggests you have a caricatured idea of what it means to be old and sick, and once again misses one of the main points of the article: doctors and patients do not begin treatment with any certain knowledge of what the outcome may be. Partly due to their work with older patients, the length and quality of life for these people is a moving target. And much of what helps younger patients to get good treatments is the result of clinical trials carried out on patients who are willing to roll the dice (on treatments that cost a shit load in their prototype forms, but then come down massively in price).

You can bat phrases around like '85-year-old Stage IV cancer patients' but even those patients have a right to be treated with the latest medical care if they so wish. Once you begin the politician rhetoric of 'tough choices' and 'finite resources', the fight for social justice is already lost - and you helped lose it. I think it would be better to reserve rhetorical flourishes about 'ugly and painful life' for the drug companies, insurance companies, bankers, and their paid-for politicians instead.
posted by colie at 2:38 AM on January 26 [3 favorites]


It found it interesting that this part of the article was quoted above:

"What patients seek is not scientific knowledge doctors hide, but existential authenticity each must find on her own. Getting too deep into statistics is like trying to quench a thirst with salty water. The angst of facing mortality has no remedy in probability."

That was the part of the article that I, as a patient with terminal anaplastic astrocytoma (brain cancer), find incredibly frustrating. The author projected his own experience as a medical professional diagnosed with cancer to other patients.

It is the process of understanding the statistical realities of my prognosis from a practical perspective, and being able to plan for a reasonable expectation of mortality, that has enabled me to deal with my diagnosis and live my life with positivity. Putting my head into some idealized sand, pretending that hypotheticals pulled from research into the probability of the length of time before my death is ridiculous.

I don't want my oncologist to be "optimistic" and present lies to me that imply that I will be part of the small percentage on the far end of the prognosis stats. I want the information so I, as an intelligent and independent adult, can deal with the truth of my illness in the way that I choose.

That is why I switch oncologists. My current oncologist is frank and practical, and treats me like a patient who can understand the impact of her illness on her life, and plan for the eventual death from the cancer. And yes, I have already hit the other side of the statistical curve.

The 2012 piece in the NY Time blog section provides, I think, a respectful consideration of treating patients ethically and responsibly by providing true information.
posted by miss tea at 4:18 AM on January 26 [9 favorites]


You’re suggesting we just cart them away?

No, I'm suggesting we make cost-benefit analysis of various treatment options. Which we kind of do anyway but we don't really talk about it and we pretend we don't do it. I'm suggesting we stop being hypocrites and have the conversation out in the open without pretending it doesn't happen or shouldn't happen.

You can bat phrases around like '85-year-old Stage IV cancer patients' but even those patients have a right to be treated with the latest medical care if they so wish.

Once again you're assuming your conclusion, though. And I still can't get you to either acknowledge or disagree with the idea that if you have a finite pool of resources for medical treatment you have to ration it out in some way, even if you take steps to make that pool of resources bigger. So I have no idea if you disagree with the idea that we have to make decisions about how to best spend our health care dollars at all or if you just disagree with spending them on people with the best likely outcomes.
posted by Justinian at 12:39 PM on January 26


There is no 'finite pool of resources for medical treatment.' These things are socially determined, as are the prices of the services and technologies that comprise them.

200 years ago there was absolutely no 'pool of resources for medical treatment' whatsoever. Various social changes have taken place since as a result of class struggle and refusal to accept political 'realities' etc.
posted by colie at 1:07 PM on January 26 [1 favorite]


I guess we have a fundamental disconnect, then, because I think the idea that there is not a finite pool of resources for medical treatment or, really, anything flies in the face of reality. Leaving aside the false-positive problem for now, we could not afford to give every American a full body MRI every six months even if it would save lives by detecting cancers early. And so on.
posted by Justinian at 3:06 PM on January 26


Here is one way we already do what what I'm talking about, for values of "we" including our UK Mefies: Measuring effectiveness and cost effectiveness: the QALY. This is what I'm saying, we already do exactly the sort of thing I'm suggesting in many places and for many things, but we can't talk about it without people freaking out.
With the rapid advances in modern medicine, most people accept that no publicly funded healthcare system, including the NHS, can possibly pay for every new medical treatment which becomes available. The enormous costs involved mean that choices have to be made.
So, yeah, resources are finite. Choices have to be made. Here in America we make those choices based on who can afford them. I suggest the British and other countries have a better system.
posted by Justinian at 4:05 PM on January 26


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