The Colon Club

Healthcare costs for cancer, etc --- discussion

Please feel free to read, share your thoughts, your stories and connect with others!

Re: Healthcare costs for cancer, etc --- discussion

Postby lifeisajorney » Fri Apr 06, 2012 1:29 pm

Gaelen: I have' never posted anything, but alway reads everything and just want to say Thank you for comments..I have elected no more chemo after failed liver resection, and it so awkward to have made my decision, I read about everyone doing so much to continue and after my 7 folfox left me so messed up, I went for surgery for mets to liver. Didn't work, but anyway, I decided at 69 I would not endure chemo when chances are I might have lots more sick issues...I do not want to promote my decision only defend it as my choice and golly I am still here. Failed surgery was June 1,2011. We all have to make an informed choice and I did what I thought was best. Did keep my port, in case I change my mind, but doubt it...anyway, just thank your for your input, best message, that has helped me, in a long while. Making a no chemo choice is very hard and I don't recommend it for anyone who is not ready...everyone should do what they think is best. Thanks again for great message and to all others bless you on whatever choice you make and I wish all a happy life. Healhcare cost is what caught my eye and I feel they are much too high and how anyone is doing it I don't know...Little did I know at 40 what the end of life cost would be for cancer...thankfully I have insurance, but I am a lucky one...
lifeisajorney
 

Re: Healthcare costs for cancer, etc --- discussion

Postby robinkaye » Fri Apr 06, 2012 3:54 pm

I am talking about statistics which say that most health care costs come at the end of life, these statistics don't break it down for cancer vs. heart attack, infection or accident. They are costs associated in treating someone who dies within one year. I think you missed my point. Money spent on trying to save someone who is obviously dying is debatable and I leave that decision to the patient and the doctor. Again, you may know that nothing else can be done and elect to have no further treatment but there are people that don't know and they don't know when the end of life is until it comes.

I have seen people on this board who appear to be in the last days and I'm not going to mention anyone in particular - they are home now, maybe in their last year and maybe not. Again, you do not know for sure.

I brought in the example of a child because the discussion was about money spent in the last year of life. I know that most discussion is cancer related here but just saying that money spent on end of life care is something we need to think about is kind of frightening. I'd like to see how much is spent on end of life care for cancer patients only. How much of the total is it? How much of the total is spent on people who just want to do everything they can to prolong life.

I don't see this as wanting to have it both ways. People should be informed as to what their prospects are and they should be able to decide what they want to do. IMO, if a person is responsible they will quit fighting a fruitless battle if convinced it will do no good and I strongly believe they have every right to fight to the last minute of their lives if that's what they choose, rather if I believe it is the right thing to do. I certainly don't think the option should be taken away from anyone by the government or an insurance company. So, are you saying that if I believe in a patients right to choose that's wanting it both ways - who should make the decision?
Husband has RC Stage IIIC
Chemorad 9/28-11/07
2 rounds FOLFOX to get rid of iliac LN
LAR Surgery 1/17 ileostomy
presacral abscess 2/1 - 3/27
FOLFOX began 4/5 - 6/15
another presacral abscess 6/30-8/10
Reversal 9/11
10/15 fistula with drain
robinkaye
 
Posts: 344
Joined: Fri Nov 11, 2011 10:03 am

Re: Healthcare costs for cancer, etc --- discussion

Postby Peloton » Fri Apr 06, 2012 4:46 pm

Tough topic.

Perhaps I'm skewed by my anecdotal evidence - I know people who have been given up and clinged to a "Hail Mary" pass, and are still breathing years later - but I don't think there is a right or wrong answer. It is a personal question with subjective considerations, and people will come to different conclusions. I don't think someone who wants to fight "balls out" to the bitter end is any less rationale or reasonable than the person who decides to stop treatments.

I'm stage 3c and have spent time thinking about what I would do if and when the traditional treatments for colorectal stop working. I might decide to live my last days chemo free, or I might fight it out to the end (the latter is much closer to my personality). But one thing is for sure, it will be my decision and my decision alone. If my current oncologist will no longer treat me, I will find one that will.

Regarding the costs on society, dying cancer patients are certainly not the only people responsible, or the most culpable, for placing health-related financial burdens on society.
Peloton
 

Re: Healthcare costs for cancer, etc --- discussion

Postby Patience » Fri Apr 06, 2012 6:40 pm

From Discussions About End-of-Life Care Reduce Healthcare Costs in Last Week of Life, Reuters April 19, 2009, SOURCE National Hospice and Palliative Care Organization

http://www.reuters.com/article/2009/03/19/idUS194058+19-Mar-2009+PRN20090319

EXCERPTS:

Thirty percent of Medicare's annual costs are spent on the five percent of beneficiaries who will die in a given year. Additionally, about one-third of those dollars spent in the last year of life are spent in the last month.

A 2007 study out of Duke University found hospice saves Medicare about $2,300 per beneficiary that receives hospice care. Researchers in this recent survey looking at costs in the last week of life indicate that if 50 percent of people had a discussion with their physician about end-of-life care preferences, the cost difference in a year could be more than $76 million dollars.

"In fact, patients who received less invasive or aggressive treatments lived as long as patients who did not, indicating that attempts to prolong life in end-stage cancer patients might be futile," noted Schumacher.

"An important time to talk to your doctor about the kind of care you would want at the end of your life is not when you're days away from death but much earlier in the course of an illness," said Schumacher.

Information on care at the end of life, starting these important conversations with loved ones and care providers, and state specific advance directive forms, are all available free-of-charge on NHPCO's Caring Connections Web site, http://www.caringinfo.org, or from the Helpline at 800-658-8898.
"Sweet dreams till sunbeams find you.
Sweet dreams that leave all worries behind you."
User avatar
Patience
 
Posts: 786
Joined: Fri Dec 09, 2011 10:26 am

Re: Healthcare costs for cancer, etc --- discussion

Postby Patience » Fri Apr 06, 2012 6:50 pm

I went to the above mentioned website, and found a tab that has helpful info on :"Planning ahead is about preparing for the future today. Communicating your end-of-life wishes to your loved ones, appointing a healthcare power of attorney, and addressing financial issues such as wills and paying for long-term care are just a few of the issues you can address today to plan ahead."

http://www.caringinfo.org/i4a/pages/ind ... ageid=3277

This thread has been helpful in bring to mind some things that should be dealt with, probably as early as possible. I'm wondering how to involve (or at least inform) the [adult] children in what is such a private decision for the patient. It is a bit worrisome to think about having a wider conversation per chance there will be opinions that differ from the patient (I'm think about avoiding things like added stress for the patient, etc). At what point is it just a patient/spouse discussion vs pulling in the entire family? I'll need to do some reading at that site for a better understanding of how to best take the next step in planning.
"Sweet dreams till sunbeams find you.
Sweet dreams that leave all worries behind you."
User avatar
Patience
 
Posts: 786
Joined: Fri Dec 09, 2011 10:26 am

Re: Healthcare costs for cancer, etc --- discussion

Postby surfingon » Fri Apr 06, 2012 9:14 pm

I'd like to weigh in here regarding Gaelen's comments about the hospice in her area, and to offer a perspective based on 26 years with a very fine, very progressive hospice that has always been strictly not-for-profit.

Yes, folks, there are defintely for-profit hospices-- and they are beginning to proliferate to the point of threatening the genuine non-profit soul of hospice. In regards to Gaelen's comment about the "move 'em in, move 'em out" apparent mindset of that particular hospice, that may well be the case. My poor dear father found himself in just such a hospice when he was dying, and their cold-heartedness about "the rules" as far as how long he could stay were completely antithetical to the whole hospice movement. They actually evicted him just as he was entering the active dying stage-- transported him by ambulance to a local nursing hiome where he died 3 days later. So, yes, it does happen. Worse yet, this was, at least on paper, a "non-profit" hospice which gladly took my dad's Medicare payments-- imagine how much worse it could get in a blatently for-profit hospice with no government oversight (which is undoubtedly why they do not take insurance)

On the other hand, really good non-profit hospices all over the country are reporting that the average length of hospice care has gone from 6 months to sometimes as little as a few days. Patients are being admitted days before they die, often before they even see anyone other than the nurse, and thereby unable to benefit from the many wonderful services that hospice care offers. Why is this happening? Because doctors are loathe to have "the (difficult/emotional) conversation" with their patients and therefore often opt to treat them till they die, irregardless of whether that treatment offers any real benefit. Patients and their families mistakenly believe that choosing hospice care is "giving up", so they give signals to their doctor that they do not want to have "the conversation". Hospice becomes the last resort, a last-minute decision from which few benefit.

About Guinevere's mention of $138/day: I believe this is the current daily reimbursement per patient from the government to qualifying hospices-- NOT the amount the patient pays. It may sound like a lot, but when the actual expenditures per patient are all averaged together, our hospice spends significantly more than that per patient (because we do not believe that cost should ever be the deciding factor in what drugs to administer, unlike many for-profit hospices). Which is why fund-raising is mandatory to keep non-profit hospices afloat. When a patient signs up for hospice care, all drugs related to their diagnosis are covered by hospice, along with all durable medical equipment like hospital beds, commodes, oxygen, etc. The patient pays nothing. Just wanted to make that very clear.

For those who want to know more about how to tell a good hospice from a not-so-good/for profit hospice, please see my blog for colon cancer patients for some very concrete questions to ask the hospice intake person:
http://sheddinglightonthecancerjourney.wordpress.com/2010/01/24/how-to-choose-a-really-good-hospice-part-ii/

May all benefit,
Rachel
caregiver to husband John
Stage III CC 3-05
liver+ colon resect Nov '06
FolfoxA , FolfiriA
7 liver RFA's, 1 lung RFA
died April 29, 2009
http://sheddinglightonthecancerjourney.wordpress.com/
http://sheddinglightonthewidowsjourney.wordpress.com
User avatar
surfingon
 
Posts: 434
Joined: Mon Dec 28, 2009 4:11 pm

Re: Healthcare costs for cancer, etc --- discussion

Postby Gaelen » Fri Apr 06, 2012 10:52 pm

Rachel, THANK YOU for weighing in.

To those who felt my comments about not being able to have it "both ways" miss the point - no, not really. We are already in the place where certain procedures are being assessed on a cost/effectiveness ratio, rather than on what the patient wants to do.
We already have doctors making decisions about drugs, tests and surgeries based on what insurance companies will pay. We already have patients in one province of Canada who can't get a drug or treatment offered elsewhere unless they can afford to pay for it on their own. We already have patients around the world who have very different standards of care for CRC than US patients (PICC lines instead of ports for example.) That's evidence that we all ready don't have true free choice about which treatments we can use, or when we can start/stop them.

If you think you have great insurance and good docs and you will be able to chart your destiny all the way to the end, even if that means your choice is to be treated to the fullest extent of medicine, think again. We are already in the place where people will have to fight for and justify treatment choices (see KarMel's thread about the insurance-mandated 2nd opinion at MD Anderson.) I charted my own end-of-life course and care years ago. I knew when I would stop, I knew the kind of environment in which I wanted to spend my last days. I have terrific insurance, an aware and cooperative doctor - and I have money. What I don't have is a local hospice that will permit me to spend my last days in a professional facility that isn't a hospital or elder-care or assisted living/nursing home facility. I have never wanted that - but that is what I'm being forced to consider because of what is available in my community.

I'm learning that at the end of life, it's NOT all about you, and your decisions are only partly your own.
Be in harmony with your expectations. - Life Out Loud
4/04: dx'd @48 StageIV RectalCA w/9 liver mets. 8 chemos, 4 surgeries, last remission 34 mos.
2/11 recurrence R lung, spinal bone mets - chemo, RFA lung mets
4/12 stopped treatment
User avatar
Gaelen
 
Posts: 3833
Joined: Fri Jun 13, 2008 12:57 am
Location: CNY

Re: Healthcare costs for cancer, etc --- discussion

Postby Bill5107 » Sat Apr 07, 2012 2:45 am

This has been a good thread for me as I've been a bit disturbed too about what I've learned about the hospice care a friend of mine is getting. I can't say for sure how much is just plain wrong and how much is systemic and how much is just a few "bad apples" in the bunch. There are many different levels to look at even once you get through the higher level issues of what's available and how to pay and when you can be admitted and what bills you might bring on your family etc...

I know I've been "taking notes" and I'm likely to start asking some fact finding questions myslef, since I to actually have my own personal questions about how things work and how they might work for me in the future if(when) it becomes relevant to em.

I don't have much helpful to contribute as what I've seen and cemented in my head is that the "patient is in charge" at home lol. . . be the boss and fire who you need to as soon as you get the inclination. But as I alluded to, the "bad apples" part of this is a bit off topic, though I do wonder how far off topic when I'm sure their training, reimbursement/pay/volunteer statuses all play their role I'm sure. I actually had one nurse tell me when I visited my friend "to stay positive" when she learned I had stage 3 recurrent rectal cancer. "Stay upbeat, talk about the future!" OMG! It was clear to me she really needed training if she thought she was helping in any way shape or form. My friend had her purpose and she determined the conversation. This same nurse had an issue when my friend (a 29 y/o female) wanted to be transferred to her bed in her bedroom so that I (a 40 y/o male) could visit. The social worker that was there had to explain to us what the poblem was. . . that she was "playing mom" lol. the social worker set the scene straight in pointing out that my friend was the boss, they were there just to implement her wishes.

But I really am off target here.

I can only agree that there is a lack of understanding of basic science many times when tests or treatments that won't improve things are demanded or even offered as "the best the Dr can do". I also agree it is a tough position to be in. By far, I find the most disturbed, upset, and worried about the costs of these things, the ability to pay, and the power insurance and other corporate entities really have over our medical care.

I don't think we need to look at the costs of end of life care directly here, as that complicates things a lot as well. After all, if we start doing that, then we need to look at why health care is as expensive as it is. Why are so many treatments so stinking expensive to begin with? Maybe folks here are "more evolved" than me, but I often feel like I'm being taken for a ride when I see the itemized bills. As far as I can tell, there are either strong profit motives (profiteering if you are in that camp), fear of being sued (paying lawyers on both sides to make money off sucking blood out of the rocks, if you are in that camp) or any of the about dozen other things I see that actually seem to make things more expensive and defeats the use of common sense approaches.

But what do I know? I have no idea how to systematically understand this or make useful decisions or plans based on facts. It really seems to boil down to a big fat gamble...gambling that putting money here or there is my best option, betting that if I make this choice or that I will make out and not wreak havoc on my family. Remember when the news covered hard luck cases where loving couples would divorce to avoid the financial difficulties and "marriage penalties"? Sigh. It's too late for me to be posting clearly.

Sorry Gaelen, I did anything but keep my subjects separated cleanly or even argue any single point :? Perhaps my whole rambling post can be summed up as "Cancer sucks ass"
2010-07-02 Dx rectal cancer (Stage 3)
'-07-21 Chemoradiation
'-10-13 APR surgery, 10/18 nodes still active
'-11-22 12x2wk rnds FOLFOX
2011-12-07 Mets X-P
Don't retreat, reload!
User avatar
Bill5107
 
Posts: 1376
Joined: Sun Jul 11, 2010 5:50 pm

Re: Healthcare costs for cancer, etc --- discussion

Postby KarMel » Sat Apr 07, 2012 4:56 am

Before I had my appt at MDAnderson, when I was told it would cost approx $16K, I mentioned that to my local oncologist. I told him I thought that money would be whole lot more beneficial if I just gave it to the local food bank, and he said "yeah, you are probably right." :?

I have not even thought much about hospice at this time, but since I am running out of treatment options, perhaps I should. My primary care doctor, who is a very good friend, really doesn't want to hear me allude to the possibilities of not being a candidate for more treatments. She is hoping I can do another experimental trial. :shock:

Cutting healthcare costs, as was alluded to in the link I provided in orginal post, does not begin or end with the money spent on cancer patients....it is simply the facet that affects me most at this time.

If anyone from any other country besides US are reading this, I would hope they chime in.
Stage IV, April 2009.
Treatments...multiple .
Currently none
"It is well, with my soul"
User avatar
KarMel
 
Posts: 1523
Joined: Wed Oct 14, 2009 7:48 pm
Location: Indiana

Re: Healthcare costs for cancer, etc --- discussion

Postby rp1954 » Sun Apr 08, 2012 7:25 am

KarMel wrote:At the office yesterday, a patient who had recently been hospitalized for severe herpetic vaginitis called in and wanted a prescription for a "donut pillow." She had one at the hospital, but left it there. If we called her in a script, Medicaid will pay for it. I have no idea how much one of those costs, but it got everyone in the office debating why American healthcare needs reform and why so much of our spending is wasteful.

....The recommendation likely to stir controversy, and even revive charges of "death panels," is to not use chemotherapy and other treatments in patients with advanced solid-tumor cancers such as colorectal or lung who are in poor health and did not benefit from previous chemo.........ASCO therefore recommends that such very ill, weak, and non-responsive patients receive only palliative and other end-of-life care.

ASCO's statement worries me when many parts of US options have artificially high costs, like many drugs, various insurance systems already control the bulk of your funds with some important choices missing, and less voluntary social policies keep creeping into individual decisions.

In other countries, part of the *typical* treatments are doing less, with lower cost treatments for fewer lines of treatment. Part lower priced good and services (much lower in many countries) that overlap US options; in part, fewer high priced goods (e.g. avastin and erbitux) and services (CT, MRI, PET); sometimes more cost effective goods (cimetidine, PSK, UFT, biomarker panels) and services (some kinds of surgery) and sometimes more medical freedom. Similar component prices vary wildly, sometimes 80-90+% lower. Overseas treatments range from brutal poverty choices, to superior components for various particular situations.

In the US, most but not all things are available, at least for a price, just not at one shop. Integration could be a full time project. Right now, overseas affordability with some lower costs might enable many things including (self) experimental options and personal physical or nursing support. Including far beyond "typical".
Last edited by rp1954 on Sun Apr 08, 2012 7:38 am, edited 1 time in total.
watchful, active caregiver for stage IVb CC since early 2010. "Chemo forever," or until the last mCRC nodule is eliminated.
rp1954
 
Posts: 469
Joined: Mon Jun 13, 2011 1:13 am

Re: Healthcare costs for cancer, etc --- discussion

Postby Mys » Sun Apr 08, 2012 7:37 am

Hi,

I want to post a link to a very good article from The New Yorker, printed 2010, dealing with the core issues of this discussion. It is a long article, but well written and well worth your time if you can stomach reading about young cancer patients dying. I find this quote interesting, especially the last bit (refferring to another essay, "The median isn´t the message, by Stephen Jay Gould, pointing out that some will exeed doctors expectations on how long they live):

It has become, in my view, a bit too trendy to regard the acceptance of death as something tantamount to intrinsic dignity,” he wrote in his 1985 essay. “Of course I agree with the preacher of Ecclesiastes that there is a time to love and a time to die—and when my skein runs out I hope to face the end calmly and in my own way. For most situations, however, I prefer the more martial view that death is the ultimate enemy—and I find nothing reproachable in those who rage mightily against the dying of the light.”

I think of Gould and his essay every time I have a patient with a terminal illness. There is almost always a long tail of possibility, however thin. What’s wrong with looking for it? Nothing, it seems to me, unless it means we have failed to prepare for the outcome that’s vastly more probable. The trouble is that we’ve built our medical system and culture around the long tail. We’ve created a multitrillion-dollar edifice for dispensing the medical equivalent of lottery tickets—and have only the rudiments of a system to prepare patients for the near-certainty that those tickets will not win. Hope is not a plan, but hope is our plan.


Read more http://www.newyorker.com/reporting/2010 ... z1rRtPauBI

I agree with the author that there is nothing wrong with looking for the lottery ticket, hoping to be the long end of the statistical tail, as long as there is a system preparing and helping patients who are not winning. And I think that while the individual may seek every available treatment, it is the role of the lawmakers to build a system that won´t collapse from growing health care costs when the aging popluation will seek ever more expensive treatments when they are dying. I really don´t know how I will react myself when that day comes, if I will be fighting to the very end or try to accept what comes without too much medical intervention.I think it can be especially difficult if you are young - and I think it is difficult to know how one will react before one is placed in the situation. I have enormous resepct for you who are facing this right now.

This article: http://www.nytimes.com/2010/04/04/healt ... nyt&scp=12
describes the choices made by a 40 year old physician who was a leading practitioner in palliative care when she herself became terminally ill. She had been couselling terminally ill patients:
She had been telling other people to let go. But faced with that thought herself, at the age of 40, she wanted to fight on.
CC diagnosed June 2010 (at 34), stage 3C. 10/26 lymph nodes. Simultaneous DCIS breast cancer. Lung met first seen on scan March 2012 (6mm), open lung surgery October 2012 (8mm). Biopsy confirmed metastasis. No chemo after lung surgery, NED one year later.
Mys
 
Posts: 148
Joined: Wed Nov 10, 2010 1:06 pm

Re: Healthcare costs for cancer, etc --- discussion

Postby lifeisajourney » Sun Apr 08, 2012 8:52 am

I live in the USA. My biggest problem right now for end of life decsions is that hospice pays for everything except if you are in patient, there is a 5 day respite allowed, and in patient for end days. In all honesty, I have not contacted a hospice yet, but have researched on line. I want to be home, but that entails someone here 24/7 if I were to get bedridden. It will get complicated and expensive and then money problems will kick in. End of life regardless of illiness is very very expensive for the family that can't do everything..I spend a lot of time worry about being a financial burden, something none of us should worry about at this time. I look back and see how much they were willing to pay per month for chemo/drs/hospitals/tests when I was in treatment, which I am ok with, but when I elect no treatment there is a big difference in what they will be willing too pay. End of life should be an easy time for the patient, not a worrisome time because of what shall we do. Everyone says dont worry about it, you won't be here, but I will go thru it and I worry about what it will do finanacially to my family....I guess I should have worried about it when I was younger, but could not afford to do much then....thank you all for a conversation we all have to face, and not many willing to deal with yet...this is a place to come for discussion about living, but unfortunately there are many aspects to this illness......I tell my husband hopefully I'll just drop over dead and then we have no problem....unfortunaely he has the heart problem......love what we all go thru..Happy Easter to all....one good thing about not being in treatment, the food tastes good...
lifeisajourney
 

Re: Healthcare costs for cancer, etc --- discussion

Postby Gaelen » Sun Apr 08, 2012 9:58 am

Mys wrote:I agree with the author that there is nothing wrong with looking for the lottery ticket, hoping to be the long end of the statistical tail, as long as there is a system preparing and helping patients who are not winning. And I think that while the individual may seek every available treatment, it is the role of the lawmakers to build a system that won´t collapse from growing health care costs when the aging popluation will seek ever more expensive treatments when they are dying. I really don´t know how I will react myself when that day comes, if I will be fighting to the very end or try to accept what comes without too much medical intervention.I think it can be especially difficult if you are young - and I think it is difficult to know how one will react before one is placed in the situation.


I want to say that before replying, I read this post, left this site and did other work online, and finally came back to it because it bothered me so much. It bothered me because it is a symptom, a good illustration, of the attempt to have it both ways that I spoke of earlier in this thread. For what it's worth, I've read the article linked from the New Yorker when it was originally published and several times afterwards, and have participated in several threads that discussed it on this forum. I'm very familiar with the article - but in this post I see, again, several statements drawn almost as conclusions that I don't think the article actually supports.

Several of the implications and statements in this post trouble me greatly. To start, Gould's work was written around 1985...and some still refer to it as definitive even though the things Gould wanted us to develop have not yet happened more than 25 years later, and statistics have made enormous progress in relevance and accuracy since 1985. The personal choices of a palliative care doctor who found she needed to make different choices for herself than she'd been recommending to her patients are used to imply that perhaps her original choices were wrong...when all that we can know is true is that her job counseling recommendations were wrong for her. And finally, there are expressions in this post of age-ism that I find repulsive.

1. The problem with focusing on the "long tail" or lottery ticket of survival is that we still have not created or embraced a national or international system "to prepare and help patients who are not winning." We still foster and encourage looking for that lottery ticket, that hail mary miracle, a solid 27 years after Gould wrote "The median isn't the message." But as posts on this forum indicate every single day, we've made little to no progress as a society in developing a healthier attitude about death and dying. And in my experience over the last eight years, it has been PATIENTS and CAREGIVERS who are the worst offenders at encouraging themselves and others to cling to the search for the lottery ticket. Doctors, who are castigated for their approach when they try to bring up the subjects of prognosis, death and dying, are trying to improve. Most patients and caregivers still think somehow that they are entitled to live forever, and many will accept nothing less from the counsel of their medical team.

The essential qualifier at what makes it "ok" to search for the long tail of hope is that there is a system for the vast majority who will not survive. Yet even though that system doesn't exist, people still cling to the search for that long tail. IMO, that does NONE of us a service - not patients, not caregivers, and not those who will come afterwards. False hope, meet those who sustain you. ;)

2. The philosophical approach that individuals have the right to seek any and all types of treatment for their diseases is basically incompatible with the concept that "it is the responsibility of lawmakers to build a system that won´t collapse from growing health care costs when the aging popluation will seek ever more expensive treatments when they are dying." We can't, as I said earlier in this thread, have it both ways. There is effectively no "right" to seek any and all types of treatment" if there are fail-safes in the system to keep costs in line. Period. We can have one: full-out freedom to choose any treatment we want - or the other: treatments and care regulated with an eye to costs - or some type of compromise between wants and needs. We CAN'T have both.

We ain't gonna find no money tree to solve this conflict between wants and needs, folks. That means that one of the only ways to accomplish effective change is to have a major psychological shift among patients and caregivers away from mistaking the want for every treatment, no matter what the risk/reward, as an actual NEED for every test and treatment. As Jaynee asked very early on in this thread, how are we going to get there? I have no idea, but I am pretty sure it ain't gonna be easy. And I know we're not gonna get there by having 30 year olds blame "the aging population" for seeking "ever more expensive treatments when they are dying."

We - us, cancer patients - are JUST as responsible for creating need for those expensive treatments as any "aging" population. Drug companies aren't creating things like regorfanib for the 90yo person slowly dying of congestive heart failure and other co-morbidities...they are creating those very expensive new drugs FOR US. The aging person, someone who is 90+ and bedridden and terminal doesn't get drugs that cost what Avastin and Erbitux cost or get HIPEC surgery. It's time to take a realistic look in the mirror, people. That population demanding expensive treatments may be be one of the enemies of a solvent healthcare system, but the enemy is us.

3. This next part isn't politically correct, but I'm going to say it anyway. Heck, if you title it "Rant," it appears you can say just about anything on this board and it'll be let go, so let's put this in the classification of a RANT. ;)
I am deeply disturbed every time I read here that this disease, decisions about death and dying, and treatment choices are somehow intrinsically tougher for someone who is "young." While I agree that no one can really understand the conflicts of choices faced by the dying until they are close to them and living through them, I am sick to death of the presumption that because someone is "young," those conflicts are somehow tougher - especially since "young" is such a relative term.

What is "young" after all when life expectancies are close to 80 years? I was diagnosed shortly after turning 48. Yes, that is older than someone who was 30. It is also younger than someone who was 70 at diagnosis. Are there differences in perspective in the ages of those diagnosed? Yes. But I submit that shortening of life is still shortening of life, no matter what the age. I was in the prime of my life, at one peak of my career and about to move to the next level - all things which became impossible as the realities of my diagnosis and treatment began to make themselves apparent. People under 30 have a set of concerns, people who are under 50 have a set of concerns, people over 65 have a set of concerns. All of them are valid. But y'know what? The outliers being diagnosed with CRC are those OVER 80, not those under 50.

People diagnosed from 20 - 50 are not only longer the outliers they once were - they are, in fact, the fastest growing age group with new CRC diagnoses. They're the age group with the most likelihood of being diagnosed in late stages with poorer prognoses. The phenomenon has been growing at the rate of about 4%/year since the mid-80s, and is now so apparent and noticeable that it's going to be a major focus of several presentations at the Colon Cancer Alliance's national conference in Baltimore this June. The idea that people in this age range have to confront death and dying is not something people are used to...but it's no longer something that's crazy uncommon. As a 56yo who was diagnosed at an age when I could be considered an "outlier" in terms of CRC diagnosis, I find it insulting and ageist to be told that it's somehow more horrible and more difficult to have to make these decisions about death, and dying, and continuing or discontinuing treatment at 56.

Several of the bravest, calmest, most emotionally-together cancer patients I've met over the years have been under 20. Angry? sometimes. But they already had a healthier attitude about life, living, death, dying and their cancer than many adults I've met. So please, let's watch (or at least qualify) our words when it comes to how impactful death and dying is upon people, of whatever age. Let's not blame the over-90s alone for making economic choices that bankrupt the health-care system. The average treatment costs for a stage IV CRC patient of any age who takes multiple chemos, has multiple surgeries, needs multiple hospitalizations and used the latest expensive targeted therapies like Erbitux and Avastin is spending just as much, in a much much shorter period of time, as a 90+ patient in a hospital bed.
Be in harmony with your expectations. - Life Out Loud
4/04: dx'd @48 StageIV RectalCA w/9 liver mets. 8 chemos, 4 surgeries, last remission 34 mos.
2/11 recurrence R lung, spinal bone mets - chemo, RFA lung mets
4/12 stopped treatment
User avatar
Gaelen
 
Posts: 3833
Joined: Fri Jun 13, 2008 12:57 am
Location: CNY

Re: Healthcare costs for cancer, etc --- discussion

Postby Laurettas » Sun Apr 08, 2012 11:12 am

Once again, very wise words, Gaelen. I struggle with the expenses of my husband's treatment all the time. The guilt is tremendous. I would not be so repulsed by the costs if, at the end, there was substantial benefit in years of survival. But, to know that it is very possible that his life won't be extended more than a year or two with expenses for drugs alone already over $200,000..... I have read about some longer term stage IV survivors whose expenses are well over a million dollars.

But, and this is a big but, that is his choice and one I cannot try to influence. I have mentioned it on occasion but at this point he is still holding out hope that a substantial development in treatment is on the near horizon. And how do we know when that it true? It could happen at any time with all the new avenues of research going on in cancer treatment.

Also, my husband knows that my financial situation will be much better if he can make it another 3 years until he is 62. But, again, the expense to get to that point is going to be tremendous.

I agree with you that age does not necessarily make one more ready for death. We watched a six year old girl who was very accepting of her death, while our parents, who are in their 80's, still talk like they are going to be around for a long time. My mom still wants every intervention done to prolong her life even though she is 82 and her heart is beginning to fail!

Having experienced my husband having a potentially terminal illness both when we were young and now again that we are in our 50's, I have noticed something interesting. I noticed that I am almost more stressed out about the possibility of my husband dying now than I was when I was young with a baby. It has taken me quite some time to sort through everything and realize that my stress is due to the fact that now I have no support system. When we were young, my parents and my in-laws were both younger and healthy, so I had a place to turn. Now, that is not the case. In addition to them not being able to help, they require help from us. Our daughter's life is full to overflowing with five children 8 and under. Again, not a source of support since they need our help. Then there is always the financial dilemma. I am a woman who never entered the work force so, at 56, am pretty much unemployable.

I thought the part in the article explaining the manner in which death was dealt with in the Middle Ages was quite important and something that we need to return to. It is interesting to me that, as a Catholic, our faith has built into its liturgical cycle those times of focusing on our deaths, preparing mentally and spiritually for that time in our lives, but we are ignoring them! The culture of denial has overtaken that which we say that we believe as Christians. It is very interesting.

It must be quite difficult for health care professionals in dealing with all of this. If a doctor is matter of fact about the realities of an individual's situation, they are often labeled as cold and uncaring. We get regular pep talks from the oncologists about not trusting statistics and my husband's uniqueness (the same uniqueness that everyone has!) but I just don't know if those are ultimately the best conversations to be having. It is all quite confusing.
DH 58 4/11 st 4 SRC CC
Lymph, peri, lung
4/11 colon res
5-10/11 FLFX, Av, FLFRI, Erb
11/11 5FU Erb
1/12 PET 2.4 Max act.
1/12 Erb
5/12 CT ext. new mets
5/12 Xlri
7/12 bad CT
8/12 5FU solo
8/12 brain met
9/12 stop tx
11/4/12 finished race,at peace
Laurettas
 
Posts: 1490
Joined: Tue Jun 21, 2011 9:49 pm

Re: Healthcare costs for cancer, etc --- discussion

Postby Mys » Sun Apr 08, 2012 3:44 pm

Hi Gaelen, I think we might agree on this one more than we disagree, but I may have interpreted the article differently than you. You write that:
The philosophical approach that individuals have the right to seek any and all types of treatment for their diseases is basically incompatible with the concept that "it is the responsibility of lawmakers to build a system that won´t collapse from growing health care costs when the aging popluation will seek ever more expensive treatments when they are dying."


In the quote I mentioned, I interpret the author to have a different view than that "individuals have the right to seek any and all types of treatment". The quote cites Gould, but then concludes:
The trouble is that we’ve built our medical system and culture around the long tail. We’ve created a multitrillion-dollar edifice for dispensing the medical equivalent of lottery tickets—and have only the rudiments of a system to prepare patients for the near-certainty that those tickets will not win. Hope is not a plan, but hope is our plan.


My reading of this is more in line with your opinions, Gaelen: that the culture favors "the long tail / the lottery ticket". We spend a lot of money on what will give little in neither life quality or years, and "have only the rudiments of a system to prepare patients for the near-certainty that those tickets will not win", like good counseling and hospice services.

Yet, like I said I have too much respect for terminal patients to argue against those who want to fight to the end - I don´t know how I will react myself even though I hope I will be able to meet the end with acceptance. The last article I linked to showes this - a person that reacted differently towards the end than she had thought she would. I respect that.

My personal political opinion, however, is perhaps colored by the country I live in. I actually believe it is the governments job to limit health care costs, and that will include limiting treatment that has no evidence of proloning life or bettering quality of life. I hold this opinion even though my mother was denied a treatment for colon cancer that at that time was concidered experimental, but was later proven to prolong life (liver resection). This treatment is standard care today. My mother sought treatment abroad, and payed for it, taking up a loan. I hold this opinion because of the rising health care costs - if we are to make a system that gives good quality health care, something has to be limited. To regulate this, I think the free market economy will fail to regulate the costs, government has to make regulations on what to prioritize. But I am no expert on the Amerian health care system, just speaking from what I know in my country and my short stay in the US.

And on the concept of age - I consider my mother a young colon cancer victim, when she died at 52. But I read in the papers obituaries of so and so that died "too young" at 70 and can´t help to feel envious. I know every person is different and that my envy is playing in here. A lot of people live full lives and die young in peace. But if I die today, my three year old son will barely remember me. Being with my son is the main factor my age makes me feel I need to live more years before I can accept death.

It is a dark topic, but a conversation we need to have. I hope some of you will enjoy the articles and make up your own opinions, and thank you for participating in the conversation.

To Gaelen especially: My very best wishes.I value your opinions and your place in these discussions.
Last edited by Mys on Thu Apr 12, 2012 5:14 pm, edited 1 time in total.
CC diagnosed June 2010 (at 34), stage 3C. 10/26 lymph nodes. Simultaneous DCIS breast cancer. Lung met first seen on scan March 2012 (6mm), open lung surgery October 2012 (8mm). Biopsy confirmed metastasis. No chemo after lung surgery, NED one year later.
Mys
 
Posts: 148
Joined: Wed Nov 10, 2010 1:06 pm

PreviousNext

Return to Colon Talk - Colon cancer (colorectal cancer) support forum



Who is online

Users browsing this forum: alphagam, Angiemini, Bing [Bot], Ehut, Google [Bot], GrouseMan, ullefan, Yahoo [Bot] and 42 guests