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.