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At what personal point does the cost of healthcare outweigh the cost of life?

Category Everything else
A warning up front... this is a rather depressing blog post on what many will find a disturbing topic. If you don't want to think about death vs. the cost of healthcare for whatever reason, don't read any further. I know a number of people for which this would be very painful to think about... so just stop here if there's any reason you don't want to go down that path.

Time magazine ran a story last week that I haven't been able to ignore and forget...

Bitter Pill: Why Medical Bills Are Killing Us

It certainly isn't a quick read (it's *really* long by internet standards), but it's something that every American who cares even one iota about the cost of heathcare should take the time to read and understand.

The focus is on how medical charges are determined and billed, and it's grotesque (in my opinion). It highlights the use of what's called a "chargemaster", or each hospital's list of what it charges for everything. From page 2 of the article...

Stamford Hospital’s chargemaster assigns prices to everything, including Janice S.’s blood tests. It would seem to be an important document. However, I quickly found that although every hospital has a chargemaster, officials treat it as if it were an eccentric uncle living in the attic. Whenever I asked, they deflected all conversation away from it. They even argued that it is irrelevant. I soon found that they have good reason to hope that outsiders pay no attention to the chargemaster or the process that produces it. For there seems to be no process, no rationale, behind the core document that is the basis for hundreds of billions of dollars in health care bills.

I could probably riff on this for hours, on how the argument about the cost of healthcare has been deflected to focus on *who* pays for things, and not *why* nearly all aspects of the health care system are (in many cases) obscenely profitable for those who provide the services and equipment. Full disclosure... I do work for a healthcare insurance company, and that industry is not blameless in this mess either. But if hospitals are able to have markups of 200%, 300%, and more on common items like generic tablets of Tylenol (not to mention cancer drugs that run into the tens of thousands of dollars for a course of treatment or even a single dose), who ends up paying? Even for "non-profit" hospitals, the amount of profit that's made each year (which is then spent on things not always associated with cutting costs) is staggering. Our capitalistic system (basically, Wall Street) expects and rewards businesses that produce major profits and rapid earnings growth. Obviously, reining in costs and making things affordable goes contrary to that, and profit will rule all.

BUT... I'm getting completely off-topic for what I wanted to say here...

Page 6 of the article, under item 3: Catastrophic Illness - And The Bills To Match:

When medical care becomes a matter of life and death, the money demanded by the health care ecosystem reaches a wholly different order of magnitude, churning out reams of bills to people who can’t focus on them, let alone pay them. Soon after he was diagnosed with lung cancer in January 2011, a patient whom I will call Steven D. and his wife Alice knew that they were only buying time. The crushing question was, How much is time really worth? As Alice, who makes about $40,000 a year running a child-care center in her home, explained, “[Steven] kept saying he wanted every last minute he could get, no matter what. But I had to be thinking about the cost and how all this debt would leave me and my daughter.” By the time Steven D. died at his home in Northern California the following November, he had lived for an additional 11 months. And Alice had collected bills totaling $902,452.

The question I'm left with is this... at what point is the cost of prolonging one's life too expensive? Is having to pay (or burden your survivors with) one million dollars in medical bills for an additional year of life an acceptable decision?

The general nature of people is to want to live as long as possible. With today's health care options, things that were certain death sentences a decade or two ago are now treatable conditions with a reasonable chance of survival. If there's a chance of a cure, many people will take it. The thought of who will pay for it (successful or otherwise) is secondary to the discussion. But in the example above, I personally believe the discussion of who has to deal with the bills is primary. They apparently knew that a cure was not possible, and that it was only a matter of time before he would die of the cancer. But to him, it was survival at all costs, and who cares about the financial carnage after you die?

I know it sounds crass, and some people would probably call it an immoral choice to have to make. But in my view (and again, this is *my* personal view, not one to be imposed on others as a rule), the cost of survival has to be weighed against the cost of living with the crushing debt that will be left behind. Someone will have to pay that, and it's likely to be the person or persons most ill-equipped to do so... your loved ones who have to continue living after you're gone.

I've actually thought about this even before I read this article... if I were diagnosed with a disease (let's call it cancer) that had a relatively low chance of survival, would I choose treatment or would I choose to let it run its natural course? My mom was diagnosed with cancer after ignoring some symptoms for a number of months. By the time the results came back, the chance of survival was very small. She chose to not fight it, and to let it play out... knowing that it was a matter of weeks at that point. It turned out to be six weeks. Realistically, she could have maybe prolonged life a few more months... but at what cost, both physically and financially? Everyone will die at some point... is another two months before saying good-bye worth the cost? For her, it wasn't. And if that decision were to ever face me, I think I'd probably go the same route.

I know that each situation is different... do you have young children? Do you have excellent insurance (but even then there will still be costs)? Are your kids grown and independent? It's always going to be painful to die and leave others behind, but do you add to that pain by leaving bills that will affect the lives of those left for years?

This isn't an easy question, and it is so wrong that we as a society are faced with these types of issues given the current state of healthcare in America. But I don't see the situation improving, and I think more and more people are going to be faced with the painful choice, which is...

How much is my life worth to those who will have to pay the bill when I'm gone?


Gravatar Image1 - (deleted by Tom)

Gravatar Image2 - Duff,
This is a very relevant and important topic. Nothing in life really prepares us for this kind of decision- yet - it appears that you and your mom had to make it. And many years ago in 1979 my mother also made that decision re: cancer and chose to terminate treatment.

Gravatar Image3 - I read this article on Sunday morning over breakfast (and lunch and dinner ... it seemed like it never would end).

Seriously, though, it was an incredible eye opener. It's very easy to read an article like this and have a knee jerk reaction of "all hospitals are bad!" but in this case, the author offered a lot of evidence indicating as such.

Why should you (or your loved one) have to negotiate the cost of LIFE services like you were haggling over a car with a slimy used car salesman? Especially when you are possibly at your weakest and most vulnerable?

Most people don't have the time or energy to completely understand what their options are until it's too late. I would have liked to see Time close out the article with a cheatsheet of what every person can do to better prepare themselves for the worst.

To your point about choosing when enough is enough - an uncle of mine recently passed away. The man was in and out of the hospital for the past few years. Ambulance rides, pacemakers, stem cell transplants - I can't even possibly fathom what type of health expenses he racked up over that time. It would seem that he had good insurance. But man, if he didn't ...

Gravatar Image4 - Steve... you have no argument from me.

Gravatar Image5 - Without wanting to sound too political or patriotic this is where I and probably a lot of people do not get the US healthcare system. It should never ever come down to a life v money decision and luckily in the UK it doesn't, which we should count our blessings for (although a lot of time is spent moaning about this free, albeit through tax revenue, system).

I can't imagine someone having to choose between time and the situation that is left after (which is hard enough). To me thats just not what first world countries should be about especially when we see what our governments can waste their money on.

Gravatar Image6 - Mary Beth... the reactions of the relatives were typical and expected. They all wanted to contact the best doctors they knew, to get her into the top cancer programs. I understood the sentiment, but bottom line was that she had liver cancer, she did not have the life styles and habits that would cause that to be a primary cancer, and it meant in all likelihood that it had metasticized there. I had done enough reading (me? deal with grief by reading? what a shock! Emoticon) to know that once cancer spreads to the liver and is able to diagnosed there, it's just flat out too late.

Both my mom and my dad (especially my dad) have a fear and dislike for anything having to do with getting medical care. If she had paid attention, she would have visited the doctor in June when she had a cough that wouldn't go away, and was starting to lose weight (and she didn't smoke). By the time she went in the first week of December, she could apparently see a protrusion in the area of the liver. Obviously way too late by then.

I think her reason for making that decision was fear (of doctors, of hospitals, of having to rely on others if something was wrong). My decision would have some of those elements (I hate needles, and I don't like to have others "take care" of me). But I really think that my primary thought would be (again, given if it's something like a stage 3 or 4 cancer that has somewhat bleak odds of survival) that it's not worth paying tens of thousands of dollars in additional cost to roll the dice to "cheat death". Death will not be cheated, it's only a matter of whether it wins decisively or wins in a battle of attrition. It still wins. Why would I want to save up my entire life for some semblance of retirement income, only to spend it all on myself in a short matter of months, and leave the *other* person who was counting on that income broke?

Knowing my "luck", if I were faced with this situation, it would be normal type treatment with 60% of survival, and a course of treatment that would run out of pocket around $15K - $30K regardless, win or lose. And where do you draw the line and make the call for yourself?

Dark and hard decisions, ones I hope not to have to make for myself or with someone else. But unfortunately, it's getting ever more likely that it will be faced (at some level) as costs continue to go up.

Maybe we need the diagnostic equivalent of a DNR (Do Not Resusitate) order... a DNT (Do Not Treat) order that, like a will, states your wishes and directions in the case you are incapable of giving an informed answer to whether to treat or not, and something your family can look at and say "would they want us to give the go-ahead to being treated, or would they prefer to let things play out while trying to keep them as comfortable as possible".

Medical ethics suck... :)

Gravatar Image7 - After losing a son to cancer and my mother to natural causes within the past two years, the topic of death, and of hospital costs has been on my mind quite a bit. With my son - we had very little time to contemplate the issue, his was a rare, aggressive cancer that was diagnosed on a Saturday and he was gone by the following Friday. The doctors threw everything they could at it - in hopes of getting him stable enough to go to M.D. Anderson in Houston. We are lucky to have good insurance - because the bills for his treatment (a week in hospital for tests and then the final week after his system crashed) totaled nearly $300,000. With our coverage - our out of pocket expenses came to $1000.

Mom was in assisted living and had been suffering with chronic pain and dementia issues for several years. Within her last year we ended up at the hospital four or five times for things that turned out to be minor. In the end, she finally decided at her last crisis to forgo another trip to the hospital and to go on hospice - more to get the level of care and pain management she needed without another trip. She lasted another week. Medicare and a supplement policy covered all of her in hospital and hospice expenses - except for the round the clock sitters we used.

Soon after going through this I came upon this article { Link } about how doctors face terminal illness. It is an eye opener. Our first instincts with the ones we love is to do everything to sustain life. But quality of life is, to me of much greater importance.

On the other hand... I have a nephew who has dealt with a congenital heart issue all his life. He's had multiple surgeries, and probably faces a heart transplant in his future. It has been a hard road, and there are steep medical bills but he has the determination to keep going on.

I guess it comes down to going all out to give someone a chance at a future vs going all out to postpone the inevitable - but that's a fine line to walk.

Gravatar Image8 - It's awesome that you blogged this, Tom. Sadly, this is similar to conversation I've had with my parents, and one that I should have with my kids. While no one likes to think about stuff like this (or, god forbid, something as easy as a will), the fact of the matter is that it makes living a little easier. Thanks for the post.

Gravatar Image9 - Chuck... my sympathies for your loss with your child. I can't imagine the pain that would cause. Thanks for sharing that article. I think it makes the exact case I was attempting to make here, but far better than I ever could.

And I completely agree with it being a fine line. There's no way I would want to assume that my views should be the ones that everyone else should conform to. Every situation is different, and sometimes (like in the case of your nephew), the results are worth it for them.

Gregg... you're welcome. :)

Gravatar Image10 - Indeed a very painful ethical dilemma. My grandmother died this year at the age of 96. I am now 34 and don't remember her ever being healthy or without pain. She suffered for decades, one surgery after the other, intense home care, and care by her family, which luckily is large. The last 3 of her years were daily battles with death, and every possible medical solution was used to extend her life, regardless of costs.

It was painful to watch, yet with some sense of shame I couldn't help but think of the costs vs time value discussion. The costs in this case without a doubt were extreme, and the value returned was little or not existing. I don't speak of economic value, I speak of her repeated explicit wish to just pass away. The enormous costs led to more suffering, and only that.

My opinion is that at all times, it is up to the patient to make the value judgement. Economics should not be the key deciding factor. This is easy to say for me, because in our system (Netherlands), the costs are absorbed by society, not by any particular individual. Surely the discussion becomes a lot more harsh when astronomical costs are passed on to the family. I think that's an impossible "choice" to make for a family. Having to make that choice to me represents a major system flaw.

Gravatar Image11 - LOL... great last line, Stephan. :) But yes, it's a taboo topic for many, and too may go "kickin' and screaming".

Gravatar Image12 - The topic of disease and dying are very much a taboo in a lot of western cultures. Whenever something isn't in the open profiteering can kick in. So no surprise there. What is a delicate question and can rub a lot of people on the wrong site: when are you ready to go? It has two sides: are *you* ready and what happens if you loose a loved one?

I recently spoke to a Buddhist teacher on that topic and she shared that the medidation practice (also) serves the purpose to quietly go when the time is up. Throwing all possible time-buying procedures at a terminally ill patient is more like "kickin' and screaming" not to be carried away.

It is never easy to face death, but we can be prepared.

Bonus track for Buddhists & Hindus: you come back anyway.

Gravatar Image13 - The topic of disease and dying are very much a taboo in a lot of western cultures. Whenever something isn't in the open profiteering can kick in. So no surprise there. What is a delicate question and can rub a lot of people on the wrong site: when are you ready to go? It has two sides: are *you* ready and what happens if you loose a loved one?<br /><br />I recently spoke to a Buddhist teacher on that topic and she shared that the medidation practice (also) serves the purpose to quietly go when the time is up. Throwing all possible time-buying procedures at a terminally ill patient is more like "kickin' and screaming" not to be carried away.<br /><br />It is never easy to face death, but we can be prepared.<br /><br />Bonus track for Buddhists &amp; Hindus: you come back anyway.

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Thomas "Duffbert" Duff

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