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I am having trouble staying silent on the current loud and rowdy health reform argument (I haven’t really seen much debate), then again, I haven’t been silent. Here is a repost of my position, first published in February 2008, layed out as clearly as I can make it.
For over 20 years our country and its undying commitment to capitalism have tried desperately to slow mushrooming healthcare costs, and failed miserably. HMOs, Capitation, things that business was confident would succeed where those fiscally incompetent doctors failed, fell flat. Patients, it seems, did not tolerate their health and well-being treated as a business. I suppose business was part of the problem. After during WWII, with wages fixes and worker shortage, jobs starting sweetening benefits with healthcare and insurance to compete. It turns out patients and workers really, really like this system. It removes us from feeling any of the pain in our wallets with doctor visits and poor health.
Speaking in strictly capitalist, business terms customers were going to receive services from physicians, while a third party, insurance companies and businesses footed the bill. This removes some of the natural checks on inflation of cost. The patient and the doctor can now gang up on the third party payer, making control of spending difficult. So as an economist, obviously we just need to restore the marketplace, right?
It really depends on how one envisions healthcare. I can’t see going to the doctor or hospital the same as shopping for a new SUV, or getting cable TV. Our health is a fundamentally different thing, central to our quality of life, our independence, even the pursuit of happiness. Is it something people deserve or something we buy, dependent on our resources and wealth?
Without question it is dependent on our wealth to some extent, because it is creating a very real drag on our economy. Businesses have been weighed down with the cost of healthcare to the point where even the most heartless capitalist is demanding that the government do something to fix this mess. We spend more on healthcare by far than any other nation in the world. In spite of this, we have huge inequities in care with a mushrooming population of “working poor.”
These are people who have jobs and contribute to society, eliminating their eligibility for medicaid, but don’t have access or resources to get health insurance, so they go without. These people do take themselves out of the equation. The price checks work, as they stop seeing the doctor, that is until their uncared for hypertension, diabetes, cancer, lands them straight in the hospital desperately ill, devouring resources. But hey, a recent study actually showed this saves us money. We should just let them shorten their lifespan right?
You could even go so far as to say they deserve it for not taking care of themselves. If they just ate right they wouldn’t get hypertension or diabetes, right? Problem is fat, sugar, processed food are very cheap. Fresh fruit, vegetables, unprocessed grains are not so cheap and take time to prepare, time that could be spent working away at your minimum wage job to make ends meet. No, I am afraid blaming the poor has become an American pastime, one I am deeply ashamed of.
I have witnessed it firsthand. In medical school, our catholic hospital often received “patient dumps” from another large private hospital. These were medicaid patients, the cost of their care being eaten by the hospital. Medicaid pays substantially less than the actual cost of healthcare with the thought being that Hospitals and Doctors can take the hit as doing their share of charity work. This being the real world, the cost is passed on to everyone else through inflated costs to cover losses caring for the poor. These losses would be very manageable if the poor were evenly distributed among us, and everyone took in their share. Alas, the poor are concentrated in the inner cities, the victims of family flight to the suburbs, or in rural areas where the resources are scarce. We now have laws outlawing patient dumping and ERs everywhere are becoming the primary health care clinic for the poor. ER physicians are frustrated, burnt out and cynical. Many of them blog about it. Many of them grow contemptuous of those they care for. It is sad really.
The president recently stated that we actually have universal health care in this country. He was referring to our “safety net”, government and community hospitals. In fact all hospitals are now required by law to take care of everyone who walks through their doors, regardless of ability to pay.
I have spent a good portion of my training in county and inner city hospitals and I have seen our safety net in action. I have watched as a hospital has closed, causing an overflow of the poor to other hospitals. When the poor arrive in too large of numbers, the old patients get spooked. They equate care for the poor with substandard care. They leave and take their insurance with them. The end result is that, indeed, care for the poor becomes substandard. Morale in these hospitals is exceedingly low. They go bankrupt, they cut staff and wages to make ends meet, they outsource, then they die. All the while, patients with money cause the suburban hospitals to thrive, explode, and expand. This is what it means to make healthcare a commodity. This will destroy our “safety net.” This is a crisis.
A main argument I have seen on other blogs against a single payer system is that people will expect more, waste more and everything will cost more. They state that patients won’t tolerate the rationing of healthcare that a single payer system will require. Governments won’t control the spending because it is politically harmful. I agree. I can tell you right now, patients don’t tolerate rationing. We have a tiered system with quality going to the highest bidder. This is capitalism, welcome to America, right?
I just can’t embrace it. My stomach has turned watching the market in action as hospitals are destroyed and the face of the poor ground upon. The resources available to medicine are not unlimited. We do have to face this. Personally I believe a single payer system would at least be a huge improvement over the fractured system we have now. You could tax business what they are paying for healthcare right now, eliminate all the duplication of beauracracy in insurance companies and with the money you save, put it toward real quality that benefits everyone, all without raising costs, which you could fix with inflation adjustments to force economic responsibility. Since we spend twice as much on healthcare as any other nation, we would have the best system in the world instead of the most wasteful.
Realistically you would still have two tiers. The Uber rich, I am sure, would feel they wanted something better and would pay out of pocket to doctors that would only be too happy to oblige. If they pay taxes and foot the entire bill, I suppose it is only fair. They would be a definite minority. The important thing is that healthcare would become a resource that we share.
There is a certain basic concept that we are beginning to forget in our society, the concept of common wealth. Way back in the days of print media, communities would pool their resources to build a collection of books we call a library. This was because information and education was felt to be mutually beneficial if shared. The poor can only benefit from learning. We all can gain more as a group, enriching the whole, than any of us can individually. This is a way the group can protect resources from individuals who would devour or horde them. It turns out that together we have much more than any of us could ever hope to acquire individually. This is the thinking behind public museums, national parks. These are something different than commodities. They are actual sources of well being. This is our true wealth, and it is shared.
The common wealth of America are habitats, ecosystems, languages, cultures, science, technology, schools, social and political systems, democracy. These are things often so basic we sometimes forget how much we have. They are things we all value together and are well worth fighting for. So is medicine a right, or a commodity dependant on resources and wealth? My answer has to be an unqualified yes, it’s both.
I believe, sincerely in the depths of my soul, our commonwealth has to include medicine. We need to protect it, not exploit it. I doubt any of us could calculate what exactly any of these things would cost on the open market. I think it is safe to say that taken together our common wealth’s value exceeds all we could ever own privately.
This is why collectively, we need to move to protect healthcare and medicine and distribute it among ourselves equally. Yes this means placing some trust in the government, which after all represents all of us. I am just enough of a hopeless optimist to suggest this is something we must fight for. In the end, I have to come down believing health care is a right, inextricably tied with life, liberty, and the pursuit of happiness. I leave you with this closing thought about what I believe society should and can be.
“We need to speak up, to say boldly why we fight for good schools, why we build houses for the homeless, why we protect open space, why we look after the ailing and the elderly, why we pay taxes without grumbling, why we honor government as a force for public good. In a society obsessed with competition, we need to say why we practice cooperation. In a culture addicted to instant gratification, we need to champion long-term healing and the welfare of coming generations.”
Last December 24th, in the New York Times, Dr. Peter Singer eulogized one Harriet McBryde Johnson. This was a tribute to their 2003 head to head meeting, in which they sat on opposite sides and engaged in the single most fascinating debate on human rights that I have ever read. Read the rest of this entry »
First Published April 25, 2008.
Becoming the parent of a child with a genetic disease is a harrowing experience. This is likely more true today than it has ever been. We are hardwired to want the best for our children. Discovering they have a life altering condition pulls the rug right out from under parents. Discovering that the very genetic blueprint they passed on to the child is the problem makes this “act of God” personal. Suddenly, it is your fault.
Child birth is an exciting time full of anticipation. What parents often don’t anticipate is the possibility that anything could ever go seriously wrong. I took a first year medical school genetics elective right at the time my wife was expecting our first child. Note to all medical students. DO NOT EVER do this. It is a bad idea. It brought me right down to Earth real quick. It also caused me lost sleep, racing thoughts, and all around needless worry.
I also witnessed firsthand some real parental anguish. My heart ached for them. They became very caught up in questions like what the diagnosis actually was, what the chances of having another child with the same problem were, and do they need to have family members tested. The more understanding we have, the more directed the questions and more uncertain the future.
This has created or at least accentuated a new phenomenon, gene guilt. In college I had a cell biology professor who referred to himself as a “genetic cess pool.” on account of a daughter with spinal muscular atrophy, type I, a fatal recessive genetic disorder. The irony is that his genes were likely no worse than anyone else’s. It just happened that he married someone with a matching bad gene. We likely all walk around with at least a few faulty genes, usually more, among our thousands. Any one of these could result in disease if we concieve children with someone with the same exact hit. The odds of that are low, like winning the lottery, only the prize is heartbreaking.
Some genes are bad enough that disease shows up with just one copy, but for unknown reasons is super mild in some people, who may go undiagnosed until half their children get it. Other gene mutations, called nucleotide repeats actually worsen through generations until the unlucky one gets disease, and then their children get worse disease. With X chromosome disorders, the Mother passes a gene to her sons that caused her no problem because she had both a good and a bad copy. Problem is her son gets the bad gene, and has no second copy because he is male. Other diseases of the mitochondria are given strictly from the mother. All of these situations can worsen the guilt and crush the self esteem of the parent.
Science compounds the problem with evolution. We learn that nature’s way is survival of the fittest. Bad genes are selected out of populations naturally. With medicine, we have sort of beat evolution over the head by outsmarting nature, at least temporarily. People with chronic conditions are living longer and better than ever before. It is a natural step therefore, once we know about a bad gene and see its effect, to wonder if we should not select it out of the population by not having any more children. This is unnatural selection, if you will. We reason that we must do something nature has been doing anyway without our input. Some reason that if they have children they are threatening the gene pool of the race. I think it is a very flawed mindset.
Certainly many disagree with me. During the above mentioned genetic rotation, I met a teenager who was diagnosed with Li-Fraumeni syndrome, a disorder that increases susceptibility to cancer. Her parents died at a young age, and she was being raised by an aunt. The conversation between them was profound. This patient felt emphatically that her life was not a mistake. To suggest this was perhaps even offensive to her. Who would want to think their life was a mistake? For this reason, she insisted that she intended to have kids if the opportunity arose. The Aunt was mortified.
Granted, this patient had not yet experience the ravages of cancer, perhaps her point of view was flawed, but I think she had a point. This is a tough issue and certainly there are no easy answers. But I believe we often overestimate the suffering of others. I can’t help but admire her for realizing she is more than her genes. Her life was more than her disease. Individuals have much more contribution to make to society than just their genome.
I think this is a point too many people miss, especially us doctors. We are consumed with patient’s conditions. The disease too easily become the only reason we relate to them at all. We start to refer to patient’s who happen to have Cystic Fibrosis as CF’ers, Sickle cell disease as sicklers, with Asthma as wheezers, etc. al etc. It obscures the fact that we a dealing with living, thinking, feeling human beings. We physicians wan’t to prevent disease, not enable it. We grow weary of those who do not take care of themselves and present us with disease. Too many doctors fall into the snare of exasperation and contempt for the reproductive habits of those we care for.
We are too obsessed with perfection in this country. We airbrush pictures of models, causing young women to starve themselves to meet a nonexistent ideal. We celebrate beauty, strength, speed, endurance. We reject difference. It is a natural social response with ugly consequences. Just as the sick, albino or deformed chick will be relentlessly assaulted by the rest of the brood, we can have a visceral revulsion witnessing malformation, scarring, or amputation. For me, this is the human flaw we really need to work on, not the diseases. As we gain the power to manipulate our genome, how will we decide what is appropriate to treat and what is not. Short height is now an indication for human growth hormone therapy. I find that disturbing.
We need to learn to see the beauty in our flaws. Only then will we really see the beauty in humanity. I believe our imperfections are a centrally important part of our being here in the first place. Forty years ago, a French philosopher named Jean Vanier founded a religious community devoted entirely to living and worshipping among developmentally impaired adults. Speaking of Faith featured L’arche in a podcast with some profound, moving, and amazing descriptions of what we can learn from them. I encourage everyone to take a listen.
The dystopian movie Gattaca takes a look at just where a culture of perfection can lead. It isn’t pretty. In the 1930s a madman rose to power with a dream of a blonde haired, blue eyed master race setting off the most massive conflict in world history. Will we as a people fall prey to the same ideas as we develop the power to actually make it happen?
First Published March 25th 2008
MS NBC has a beautiful little story about a relatively new phenomenon, perinatal hospice and the experience of having a child with a fatal prenatal diagnosis given before birth. (hat tip to PalliMed).
Scientists have now unlocked the entire human genome, madly dashing to figure out what the function of each piece is. As a result our ability to test for genetic disease has exploded for an entire host of conditions. Unfortunately, diagnosing is a lot different than treating or curing. Knowing what is coming most often does not include being able to treat it or improving outcomes.
In many ways this is a throwback to the medicine of past centuries. Back then, doctors didn’t have a lot of effective treatments, so they made house calls, they learned to comfort patients, and be of whatever assistance they could. Childbirth was vastly different then as well. Infant mortality was much higher. Names weren’t picked out until you knew the child was okay. Attachment and hope were much more cautious.
My chosen specialty is often like this, though less often than you might think. There is an old joke about neurologists being admirers of disease rather than treaters. This is becoming less true everyday, but like most stereotypes, maybe had a small kernel of truth at its base, now distorted and stretched by the generalization. The sad truth is, any pediatric subspecialty is going to have more than its fair share of heartache and incurable conditions. And so, my heart went out to this family. I can relate. We doctors have to learn to deal with grief too. We love to bottle it up and this has led more than one physician on the fast track to burnout.
It makes me wonder what the impetus is for developing these gene tests. Too often in Obstetrics, it feels like the entire point of prenatal testing is to abort the pregnancy should it be deemed “defective”. I know this isn’t always the case. Being given time to adjust, grieve and mourn a very real loss can be helpful to so many families in this situation. Often, the worst part for families dealing with childhood illness is not having a diagnosis. Even if you can’t treat it, there is real relief in giving it a name and description of what to expect. It is not my wish to stand in judgement of any parent who has faced such a very difficult situation. Certainly facing the choice of “terminating” vs palliative care is heartbreaking either way. I have to say I was absolutely floored by the video interview of this family and the courage they took in loving, embracing, and caring for their child with Edward’s syndrome for the duration of its very brief life.
It would have been so easy not to get attached. It would have been simple not to mourn. It is the default protection response of many. It is a form of denial, the first stage of grief. I think it stops the grieving process dead in its tracks, and can make a family sick. You never get the chance to try to make peace with the tragedy.
I think this story is a beautiful example of what can be gained by not giving in to this impulse. In short, families are allowed to grieve, to cherish a memory and their short time with the baby. Then they can heal. Sometimes we need to allow pain to wash over and immerse us in order to move on and be healed. We need to grieve, and grieve fully.
The number of families that choose to carry a pregnancy with a terminal diagnosis to term is unknown, but definitely a small minority. They face family and friends who are often baffled by their decision not to terminate. One small British study showed that the number of families who choose this options reached 40% when perinatal hospice is offered. This tells me there are many who would like to see, spend time with, and know their infant and be able to tell them good bye. They just need a little help and support in doing so. What a wonderful cause.
Anyone who is interested in learning more, supporting, or referring a friend to perinatal hospice can find information at Http://www.perinatalhospice.org
There is a dirty little euphemism we all learn about in medical school called health care disparities. It seems the health care system is better at treating heart disease in men compared to women, hypertension in whites compared to blacks, and in keeping rich people healthier across the board in every category compared to the poor. The problem runs deep enough and fundamental enough that it appears no one is immune. It is the problem of poverty that I find particularly perplexing. Read the rest of this entry »