A Rag Blogger conversation:
Life, Death, Washington,
and the healthcare universe
By The Rag Bloggers / The Rag Blog / July 13, 2011
The budget/deficit negotiations in Washington have recently provoked a flurry of petition initiatives from the progressive side of the debate, urging the Obama administration to “take off the table” any changes to Social Security, Medicaid, or Medicare. This, in turn, provoked a behind-the-scenes, coast-to-coast discussion among some of the regular (and irregular) contributors to The Rag Blog — by way of our email discussion group — about what’s really at stake here, and what it all means.
Thoughtful, wide-ranging, respectful, and touching on everything from how we feel in the presence of newborn babies to what makes us afraid of death — the kind of discussion that usually can’t be heard above the roar of mainstream media talking heads. We enjoyed it so much, we wanted to share some of it with you.
Thanks to The Rag Blog‘s Sarito Carol Neiman for putting it all together.
Jane: In case y’all haven’t already received this (see below) here’s something — especially for those of us who worked to get Obama elected — to do, to hopefully end his continual compromising sell-out to the opposition. Though myself not much of a FaceBooker, this is what I posted on my page: “I have never been more serious. Cutting Social Security/Medicare/Medicaid is contrary to the Democratic Platform, not to mention contrary to common sense… why should the innocent suffer at the expense of scoundrels?”
Early on in his own presidential campaign, Howard Dean first spoke of “taking our country back.” Now, Democrats are also going to have to take our party back.
Bold Progressives Petition
URGENT: The New York Times reports that President Obama is offering Republicans “substantial spending cuts, including in such social programs as Medicare and Medicaid and Social Security — programs that had been off the table.”
Will you join 100,000 others who have signed this urgent pledge, which we’ll deliver to the Obama campaign?
“President Obama: If you cut Social Security, Medicare, or Medicaid benefits for me, my family, or families like mine, don’t ask for a penny of my money or an hour of my time in 2012. I’m going to focus on electing bold progressive candidates who will fight to protect our Democratic legacy.” Click to add your name.
Jay: This is among several petitions on the proposed Social Security and Medicare cuts I’ve seen. Though we might discuss “what (else) is to be done?” for starters I’d say: ”sign two, three, many petitions!” The web addresses for what seem to be the most proactive groups working on these issues:
- Alliance for Retired Americans: www.retiredamericans.org
- National Committee to Preserve Social Security and Medicare: www.ncpssm.org
Janet: And why is it more important to provide health care than it is to stop causing disease?
Changing the food in the schools will do far more for the health of our people than trying to fix them once they are sick. It is proven science that environmental toxins and nutrient-free food cause almost all modern disease.
Why worry about “curing disease” (really just covering up the symptoms) and not worry about what is causing it, where Obama is leading the way?
In the sixties I supported single-payer that is not just an arm of the pharmaceutical industry. People today take medicine their whole lives and are never cured.
Val: I think we can do both. Congratulate the Obama administration for the good it does on the disease prevention level and oppose cuts to social services. The statement (accompanying the Bold Progressives petition) that cutting Social Security, Medicare, and Medicaid was something even a Republican president and congress couldn’t do is the kicker for me.
How do folks think of strategy — do we give support where it’s due, as well as opposition? If not, we have to accept lots of bad with the good — not only of Obama but of most of the Dems.
Terry: Perhaps we should quit worrying about health care and focus on death and dying:
Cost of Care at the End of Life
- Patients with chronic illness in their last two years of life account for about 32% of total Medicare spending.
Source: Dartmouth Atlas of Health Care (2005)
- Medicare pays for one-third of the cost of treating cancer in the final year, and 78% of that spending occurs in the last month.
Source: HemOnc Today (2008)
- One large-scale study of cancer patients found that costs were about a third less for patients who had end-of-life discussions than for those who didn’t.
Source: Archives of Internal Medicine (2009).
Read more here.
Sarito: Amen, Terry! [Your post] appeared while I was still busy writing mine.
Janet’s point is a very good one — and the tip of an iceberg that only very few people have been willing or able to address. And as far as social security goes… if rich people (or even foolish ones) want to opt out of the system and turn their future retirement income over to Wall Street, I’d say let them go for it! Just don’t impose that recklessness on the entire country, don’t advertise it as the best and most intelligent thing to do, and for sure don’t let employers impose it on their employees.
And… I personally have no objection to “means testing” when it comes to Social Security, as long as the benchmarks for cutting payments are sufficiently high. I mean, if we can’t get millionaires and billionaires to pay more into the public coffers while they’re still working, then at least we can prevent them from taking money out of those coffers if they truly don’t need it when they retire.
I suspect when we adamantly insist that Medicaid and Medicare be “off the table,” we are avoiding coming to terms with the fact that what passes for our healthcare safety net is deeply, deeply flawed. The entire fee-for-services, disease-oriented, pill-happy, for-profit healthcare system in this country will continue to gobble up increasing amounts of public funds, if we “don’t touch it” — especially as the Baby Boom generation ages and makes its demands on
There are many worthy experiments happening around the country that suggest alternative approaches to delivering healthcare, and they are more cost-effective, offer better quality of care, and make both patients and doctors happier than anything an insurance company or HMO could possibly devise. These need to be highlighted and brought into the public discussion much more than the current occasional articles in the New Yorker or other serious “liberal media elite” publications.
And, as the system is set up now, for example — along with the entire culture of healthcare, in fact — if we “don’t touch it,” an overwhelming amount of Medicare money will increasingly go toward extending the lives of very ill, very old people, at huge expense in the last months of their lives especially, and in most cases with that so-called “life” confined to a hospital bed. Despite the fact that almost everybody who is asked how they would like to spend their last days would not like to spend them in a hospital hooked up to machines.
But there is a whole “long, drawn-out death industry” adamantly opposed to hospice and palliative care, so you get the “pull the plug on grandma”/“death panels” demagoguery whenever a proposal arises to make those end-of-life care options clear and available to people. Furthermore… have you noticed lately how many general practitioners (who are an essential part of any healthcare system focused on keeping people generally healthy rather than only on treating their specialized diseases) are immigrants from abroad?
That’s because other countries don’t burden their medical students with such a mountain of debt that they either have to take up an exotic specialty or sell their souls to an HMO if they are to have any hope of digging themselves out of that debt. We should give scholarships to every medical student who wants one, in exchange for a commitment to spend 4-5 years (earning a decent salary, mind you) at a community clinic or hospital.
And yes, we need to look at the whole malpractice insurance/litigious aspect of the system as well, I’d guess at least half of which is fueled not by victims of human error or tragic mistake who want to extract a pound of flesh in revenge (rather than just a simple explanation of what happened and a heartfelt apology), but by lawyers who want their hefty share of the proceeds.
It’s both complicated and really simple, it seems to me. But not in the ways we knee-jerk tend to think it is complicated or simple. Because we are still letting the insurance companies, HMOs, big pharma, and their lobbyists define the terms of the debate. So far, I haven’t seen a petition I could sign that begins to address the real issues at stake here.
Roger: Corporatized health care makes a killing through hugely inflated costs during the last few years of a person’s life, which is probably why they oppose single payer so strongly. I saw that during the last few years and months of my mother’s life and death from Alzheimer’s. Even with a “living will,” our family was stuck with high hospital bills and they would not release her until my mother was deemed by the tests to be restored enough to go home and predictably die a few weeks later.
Assisted living is a corporate racket, and the hospitals don’t know the meaning of cost-effective health care. The corporate health care system tried to prevent me from using the best Philippina care giver I can imagine my mother having, because Faye wasn’t part of the corporate system that assisted living tried to impose. They wouldn’t even allow Faye to give my mother her medicine. Compassion and kindness are not part of the care giver resume, when health care is provided through the system, but lawsuit avoidance is a top priority.
I think many people would be happier and get better treatment the last few years of their life living in some third world country, or a country with single payer system.
Janet: The truth is, Roger, that cost-effective health care is illegal. Many long-tried and well proven remedies exist, but FDA will not look at anything but pharmaceuticals or radiation or surgery.
But they go after anyone who is providing these alternative or traditional healing practices, saying they are not approved by the FDA. Of course, they can’t approve them since they won’t consider them.
Jay: We need to take stock of where we are, and where we are is in a position of weakness. The right is defining the terms of the health care debate. Their compelling interest is in “privatization” whereby both Social Security and Medicare are turned, carte blanche, over to the completely for-profit market system. If we don’t defend the advances made by FDR and LBJ, then we stand to lose the whole game. Medicaid may not exist at all.
That’s why it is so important, at this moment, to “save” Social Security and Medicare, pretty much as they are. If impending disaster can be staved off, then maybe we’ll control the terms of the debate, or at least be in a better position to advocate reforms of a progressive nature.
But first things first.
Dick: I thought the suggestion that we have to start encouraging old people to die was meant as a joke! It is not old people who should have to learn to greet death with resignation. It’s the bastards who got us into this mess!
Janet: The “death industry” is one reason Medicare needs some serious reform. I am glad they are talking about it, and hopeful that reason will enter. We got some pretty good stuff for health care in the stimulus package, notably comparative research funding, to see which treatments work best as opposed to just being better than a sugar pill, as well as putting more patient information online so that all your doctors have access to your lab reports, etc. The issues are not just right/left, but more complex.
78% of cancer money spent the last month? Surely many of those patients would be much better off if they were allowed to go home, be with their families, not be tortured by doomed “treatments.”
Terry: Dick, actually, my statement about focusing on death and dying was a double entendre. One meaning was a sort of joke against focusing on single-minded solutions like health care, organic food, exercise, or other single-issue solutions. In reality it will take all of those things and much more to reduce the cost of health care and improve health. The other meaning was more in line with Kübler-Ross’s book, On Death and Dying.
Far from “encouraging old people to die,” the reality is that we will all die, no encouragement needed. However, for some reason our “Christian” society has terrified folks of this inevitability. The fact is, on average Americans spend about 1/3 of their total life’s health care costs in the last year of life, trying to stay alive, and 75% of that in the last month, which is oxymoronic.
We do need good, clean, wholesome food, exercise, clean air, and water, as well as TLC among our families, friends, and society. But many focus on only one of the issues, and I am glad someone does focus, but to deride others’ attempts to find solutions is counterproductive. We are all in this boat together, and no one is getting out alive. The best we can hope for is to leave less of a mess than we inherited.
This goes into huge issues that books are written about. Like the anti-abortion folks that encourage women to carry serious birth-defects like cardiac malformations. The heart defects can cost upwards of $500,000 just to get the child out of the hospital alive. Then as they age, if they live to maturity, they will have the innate desire to procreate, and those defective genes then enter the human gene pool; leading to even more problems down the line.
Modern society has built a pest house of cards that cannot continue forever. I worry about my grandchildren.
Jane: Here, here, Terry! Great summation of our human dilemma.
As to the destiny for our progeny, the soul of Kahlil Gibran will benevolently overlook my inability to provide the exact quotation right here, in reassurance that I embraced and will never forget the gist of his pondering why we rejoice rather than weep at the birth of a child, when its very first breath eventually leads to its last: from the moment we’re born, we’re on our way to dying.
I think we laugh and giggle over a newborn out of nervous helplessness, in awe and amazement that such a cute little creature has come into being, then will be in our care until the babe grows to adulthood, ably functioning on its own. What mortal wouldn’t feel helplessly inept in the face such a charge, even while being utterly delighted at the prospect of creating a world this precious responsibility deserves.
Nowadays, the closest I come to faking anything, is upon learning of a pregnancy. “How wonderful!” I exclaim, even though I’m secretly weeping inside, thinking, what a terrible time and place to bring forth another innocent.
Incidentally, though the discussion is very interesting, please don’t lose sight of my purpose in originally posting: My thinking is, signing the petition is a formal way of informing Obama that if he agrees to/cooperates with Social Security/Medicare/Medicaid cuts, we don’t give him our money/time/(implicitly our energy/talents). Whether he/his advisers will heed our fair warning is unknown, of course. But there were lots of us — and for sure more than just Democrats, who sweated and bled to get Obama elected… all the expensive ads in the world don’t/won’t offset that valuable effort.
My further thinking is, signing the petition does not mean we are satisfied with Social Security/Medicare/ Medicaid as it is implemented today. Certainly we want loopholes closed and waste to be identified/ceased, so funds are truly utilized to expand the good. If we had a genuine social democracy in place, we could probably handle both taking care of children knowingly brought severely disabled into the world, if that as a parental option, while also spending boucoups on the jillions of severely dying (meaning prognosis of death is more imminent), with plenty of money left over to take care of all other health needs.
Only those directly involved would have to decide how next to proceed, and the rest of us would respect and abide by their personal choices, comfortable in knowing we have the same latitudes for ourselves.
Oh, I know I have a bad case of everlasting idealism but to me it’s sooo preferable to being greedy and grabby, squealing for room at the trough, I wouldn’t dream of exchanging maladies.
Jay: There’s an intriguing, if not troubling point raised here. It may well be the case that the lion’s share of health care cost is devoted to those in their last year of life. It looks like the argument here is “these people are terrified of death” and they shouldn’t be. It’s also true, as Terry wrote, that Christianity has let a lot of folks down. But if that’s a testament to anything, isn’t it a testament to the fear death holds over many, no matter how devout they may be?
It’s one thing if big corporate health care holds fear of death over people for the sake of profits, little different than how corporate America in general wields fear as one of its major advertising weapons. That should be fought for the abomination that it is.
Many people, who actually may be on death’s doorstep, may not know they’re about to die, or cannot come to terms with that. Maybe fear of dying is irrational, but to delegitimize it is inhumane. There are also many cases where someone in their 80s has a serious, life-threatening illness, maybe even have been read the last rites, but then responds to treatment, or otherwise recovers, and lives another good five, 10, or more years.
Who are we to deny such people hope?
If we want to put health care spending on the chopping block, I’d say let it be bloated overhead and executive salaries, and the whole “for profit” health care system itself! After that, I’d speculate there’d be enough revenue to allow people to make their own decisions about treatment, care, and the end of life, in consultation with family, close friends, and medical professionals who truly have the best interest of their patients at heart. If the end of elderly people’s lives costs some money, I’d much rather pay for that than for Predator drones that end people’s lives early.
Give people honest assessments of their condition and realistic scenarios. Then, “let the people decide.” This applies to the elderly — and the dying — as much as anybody else.
Sarito: Jay, I’d not like to be misunderstood as advocating pulling the plug on grandma, or instituting death panels because of some notion that people shouldn’t be afraid of death. There is nothing “illegitimate” about the fear of death, it’s a species-survival instinct we all carry with us. But it is sad, and I would argue “inhumane” to exploit that fear — whether for profit, as in the medical system and in the advertising by corporate America in general, or for the sake of keeping the Christian faithful devout and coming into the churches.
Fear of hell and greed for heaven is what the Christian church is all about. (Not talking about poor Jesus here, I have the sense he got sold out very early on by his so-called disciples, and not just Judas.)
Yes, there’s a larger community question about how much money we are collectively willing to spend on aggressive medical interventions at the end of life. I suspect, however, that if people are given truly dignified, pain-free, and compassionate alternatives to aggressive medical treatment that (as best as they and their doctors determine) has very little chance of succeeding, they will choose that. For those that still want to fight… they certainly deserve our compassion, and as much help and support as we can give them.
A rather wise person I know has said that the opposite of love is not hate, it’s fear. I think that’s true… and that is the larger, underlying human/spiritual dilemma to be faced in dealing with the fear of death. That is way above the pay grade of any political system or “set of rules” to solve.
But ideally, yes… I would hope we find a way that every single human being can live as long as he or she needs to, to accomplish all they want to accomplish, make peace with everybody they need to make peace with, see their favorite granddaughter get married, whatever it is that they still want to do before they die. A much more worthy use of our common resources than Predator drones indeed.
Terry: I agree with most of what has been said here; however, the real problem with the USA health care system is the “for profit” corporate medicine. It basically changes the Hippocratic Oath of “First, do no harm” to “Your money or your life.” If we had a universal care or universal Medicare system, the overhead and executive salaries would pretty much be brought into line. People would also be able to deal with their physician on a one-to-one basis.
It is the corporate interjection into the system that is getting between the physician and patient. Not only do the corporate preferred provider systems (PPS) tell the patient which physicians in the PPS they can see, it also tells the physicians which diagnostic and therapeutic procedures they may use (or suffer loss of income).
I worked for 20 years with several very competent and compassionate physicians who started to retire in the late 80s and 90s because they got tired of constantly negotiating PPS contracts. I remember one particularly good physician who said, “I didn’t go into medicine to deal with lawyers all the time, and I don’t have to.” He retired before the next annual negotiation cycle, which started as soon as the last contract was signed.
As to “death and dying,” I think this will be much more difficult to change. It is a societal attitude problem. Almost no one wants to die, but we all will. The dilemma is the very last few months before death when the medical professions feel the obligation to pull out all the stops to prevent death, even though it is an impossibility. As one who went into health care 40 years ago in an attempt to recoup my karma after volunteering for Vietnam, I have observed and thought a lot about this.
Jay, you say,
Maybe fear of dying is irrational, but to delegitimize it is inhumane. There are also many cases where someone in their 80s has a serious, life-threatening illness, maybe even have been read the last rites, but then responds to treatment, or otherwise recovers, and lives another good five, 10, or more years. Who are we to deny such people hope?
This is exactly why I say the attitude toward death will be the most difficult to change. I have seen way too many people who were comatose or not competent kept alive for even a few days at great expense, and very few of the “miracle” recoveries from such illnesses at 80 years old. It is at once societal and individual.
As for me, I hope I have a Dr. Jacob “Jack” Kevorkian available when I become so infirmed I can’t wipe my own butt, or am in irreversible pain. I do not want to squander my daughter’s and granddaughters’ inheritance trying to add one month of agony to what has been an otherwise very fortunate and comfortable life.
But, then, that is me, and death is a very personal thing; others may have “hope” eternal.
Jay: Since I live in Florida, trust me, I have not forgotten the infamous Terri Schiavo case, wherein then-Gov. Jeb Bush and a howling right wing mob fought to keep the unfortunate Ms. Schiavo alive, even though she had been comatose for over 10 years and contrary to her husband’s wishes.
We are not talking about those sorts of cases here. What we are discussing is people who are still at least mildly cognizant, and can make something approaching a lucid choice about their terminal care and/or end of life decisions. Situations like that of Ms. Schiavo are a tremendously good reason why everyone should have a “living will” and why that is the basic answer to this question.
Charlie: Fear of dying. Dying is something that humans seem to fear. I am not sure that animals do. They get scared and feel pain but I don’t know enough about animals to know. I do know that from a young child I was taught that I would go to Heaven if I was good and to Hell if I was bad, all of which over the many years of going to various churches and studying various religions turns out to be a lot of hooey.
When my father died he went off to some medical school to be carved up. When my father-in-law died we had a huge battle over what kind of box he needed. I doubt that he cared. Then I cremated my mother and got this box that I have been carrying around for 20 years and don’t know exactly what to do with? I have even lost it a couple of times in the garage. My stepmother shot herself and the church people freaked out and refused to deal with it. She had sinned. She didn’t sin, she just had terminal cancer and shot herself. Again there was a huge flap among the sisters and brothers; eventually she was cremated and that urn was sent to Amarillo.
I think it is the pain of death that we fear most. If we just fell over dead we wouldn’t care much one way or the other. Didn’t the Sioux and other tribes let their old and feeble go off into the woods to expire. Maybe they gave them lots of peyote to make it a fun trip. Christians have some sort of irrational thing about getting to be dead.
Thorne: Though pain is certainly a factor, I think we primarily fear the loss of ego — loss of “self” or consciousness of self. We invest a lot in this life and the idea that it can (will) be ripped out from under us is a rather chilling concept.
Some disciplines, of course, help us to deal with the question of ego, perhaps to tame it a bit if not to totally banish it. And many belief systems tell us that life continues in some form or another. But these are things we cannot — at least intellectually — know to be true.
Bottom line, I think the fear of death derives from the (presumable) fact that life as we know it will be snuffed like a candle.
Terry: Thorne, I agree, it is mainly fear of death that society does not teach us to deal with logically. Of course, fear is the one thing that the R’s are selling right now.