If you just snapped a quick picture, you wouldn’t see it. Not unless you were looking for the small signs, like my insulin pump. Or my spotted fingertips.
Type 1 diabetes isn’t something you can see on me. It’s not an illness that, at this point in my life, comes with any constant external symptoms. I am fortunate enough to not use a wheelchair or need vision assistance devices. You can’t see my disease, even though it’s something I manage every day.
I seem “normal.” (Stop laughing. Let me use the word normal for the sake of this blog post, at the very least!) I seem like your average 30 year old professional woman (again, stop laughing), recently married, inspired to achieve, and happy.
And I am happy.
But my good health is not without great effort.
Type 1 diabetes is a chronic illness, and one that has required daily maintenance and effort from me, and from my caregivers, for the last 23 years. Every morning starts with my meter. Every meal I’ve eaten in the last two plus decades has been preceeded by a blood sugar check and an insulin dose. And every night has my finger pricked by a lancet before my head hits the pillow.
This isn’t a pity party. Not by a long shot. My life is healthy and I have a very fulfiling existance, even if days are bookended by diabetes and even if I’m now wearing medical devices 24 hours a day, every single day. And back when I was a fresh-faced litttle kiddo, people seemed to want to cure my disease because they didn’t like the idea of a small child dealing with this disease.
Kids are fun to cure. They’re cute. And their futures seem worth investing in.
What confuses me is how quickly people forget. Type 1 diabetes became a part of my life a long time ago, and I don’t remember even a snippet of “the before.” But even though I’ve lived very well with this disease and kept it from defining me in any way, it’s still here. And it’s still something I deal with every day, regardless of how well or poorly controlled. But just because I’m no longer a little kid with the bright, shining future, am I any less diabetic? Any less deserving of that cure? Just because you can’t see my disease, and because I seem to have it under physical and emotional control, does not mean it’s past the point of deserving a cure.
Here is a vlog post that I did back in February about vlogging during a low blood sugar and how “diabetes can look so normal yet feel so rotten.” It’s a video that shows how invisible diabetes can be, but how visible it feels from the perspective of those who live with it:
Children with diabetes grow up to be adults with diabetes. And all the while, we’re still ready for progress. And for hope. And for a cure.
In his Big Speech, it was noticed that President Obama hedged a little bit in his language regarding the numbers of the uninsured. Despite the fact that the newly-released Census data reflects conventional wisdom, that the number of uninsured totals around 46 million people, the President cited “over 30 million” as the number of the uninsured. OMB director Peter Orzag has a typically wonkish post explaining their numbers — about 39 million uninsured citizens & legal residents. Some of those — a few million, it seems — are eligible for various public health care insurance programs but for a variety of reasons are not enrolled. So they settled on the vague but defensible “over 30 million.”
Anthony Wright expands on this a bit over at TNR’s The Treatment, pointing out that, depending on how you count, the numbers could be much higher indeed. For example, the “millions” of people who are not enrolled in Medicaid and CHIP often are not because the states that administer the programs have in many cases raised administrative obstacles to enrollment, delayed enrollment and even closed enrollment, in order to reduce the strain on their budgets. And if you count the number of non-elderly Americans who at some point in the past two years were uninsured, the number is over 86 million — one out of three people. While at any given point in time, the numbers may be much lower, overall, the population of people at risk of being without healthcare coverage is quite large.
Yet, voices from the right continue to dispute even the more conservative census figures.
It seems the attack on the 46.5 million doesn’t just seek to undermine the facts; it seeks to both minimize the problem, and place the blame for being without coverage on the uninsured themselves. […] But this pervasive argument by health reform opponents, made by Sen. Orrin Hatch on Meet the Press, or Rep. Dan Lungren at a town hall meeting here in Northern California, suggests their true stance… that most of the opponents simply don’t see a big problem in the first place. President Obama should not avoid this rhetorical fight. If opponents want to deny the established Census figures describing the health crisis, to minimize that the problem isn’t that bad, or to blame the victims of our broken health care system, that’s a debate I am confident health reform supporters will win.
I think this is right. The uninsured may not be the best sales pitch, because most people don’t see themselves as a member of that group, but reminding people that reform offers security & stability in healthcare coverage is a compelling promise. Moreover, as opponents of reform try to resurrect the “America has the best health care” argument, it’s handy to remind them that the health care system in the US really is terribly broken and in need of reform. As the specter of rationing is raised to scare voters, the fact that we are already rationing by income should not be forgotten.
*This blog post was originally published at Movin' Meat*
There’s a case for killing Granny? I guess so, or at least according to Evan Thomas’ article in the most recent Newsweek. Thomas, after sharing the story of his mother’s last days, concludes that death is the key to health care reform:
Until Americans learn to contemplate death as more than a scientific challenge to be overcome, our health care system will remain unfixable.
Does everything need to have a political spin on it nowadays?
But let’s take Thomas’ advice and talk about death. Not “death panels,” not the politics or the cost of end-of-life care. Just plain old death.
I was reminded recently of how fragile life is. It made me remember something I read after our oldest child was born. I realized that one day she would learn the truth about death. And I thought how bad that was, and how I wanted to protect her from it. But then, by chance, I happened across this interesting little saying.
When your children are young, all you think about is that you don’t want them to die. But when they get older, all they think about is that they don’t want you to die.
It touched me, and it made me think about how my responsibility to protect my children extended even unto and beyond my own death.
It’s a nice philosophical point, but there are very practical things each of us can do to fulfill this responsibility. Here is my list of just a few of the very important things we all should do to plan for our deaths:
Buy life insurance
If you’re young and in reasonably good health you should be able to buy a term life insurance policy for a few hundred dollars a year. You should do this so your family can have your earning potential replaced in the event of your death. Find a good insurance broker and make sure you get coverage that suits your needs. Even if you have a pre-existing condition (like a chronic illness) a good broker should be able to find you some kind of coverage. You won’t be able to buy any coverage at all if you become acutely ill, so don’t wait until it’s too late.
Make a will
This is so much more than just planning for your family’s financial future. For example, if you have children, have you figured out who will take care of them if both you and your spouse die? There are many important and potentially difficult conversations that go along with this kind of planning – but you’re much better off having them now. After you die, those left behind will end up fighting out these issues not knowing your wishes. Find a good lawyer to help you.
Make an advance directive
You need to think about what kind of medical care you want if you become incapacitated and unable to decide on your own. Do you want to live for 30 years on a ventilator, unconscious? Do you want to undergo extensive and painful treatments if you don’t have much hope of a meaningful recovery? Don’t leave your family alone trying to make that decision for you, wondering what you would have wanted. Write down what your wishes are.
Appoint a health care proxy
Pick someone who you trust to make your medical decisions for you if you are unable to do so. Write it down and make clear what you want that person to do, so if the time comes there isn’t any dispute among your family as to who is in charge.
There are many other things you can do, but to me these are four of what I think are the most important things you can do to prepare for your death. Maybe some commenters can add some more that I missed.
Now, with all that said and done, I will still disappoint Mr. Thomas.
Why? Because I still prefer to think of death as a scientific challenge to be overcome. And you know, I’m glad that many other people feel that way, too.
Especially the people who make medical breakthroughs – I’m really glad they feel that way.
*This blog post was originally published at See First Blog*
What’s wrong with using standard of care as the threshold of medical negligence? I walked you through a case, point by point, as to how the failure to diagnose cannot be considered negligence and why the process of the differential diagnosis must be protected from the fear based legal system we operate in.
When the differential diagnosis became a legal driven process, we physicians lost our ability to offer cost effective, clinical driven medicine. We became front seat drivers in the world’s largest Ponzi scheme known as the Medicare National Bank. A 99 trillion dollar black hole of defensive medicine.
What is it about the threshold of standard of care that makes it irrational? Why is that the standard for negligence? And what exactly is it? In six years of clinical hospitalist practice, three years of residency and four years of medical school, I have never taken a lecture, never seen a presentation, and never read a book about the mystical standard of care. In fact, I find myself grasping to comprehend exactly how to define its very existence.
The great legal resource, Wikipedia, defines standard of care as
The requirements of the standard are closely dependent on circumstances. Whether the standard of care has been breached is determined by the trier of fact, and is usually phrased in terms of the reasonable person. It was famously described in Vaughn v. Menlove (1837) as whether the individual “proceed[ed] with such reasonable caution as a prudent man would have exercised under such circumstances.”
It goes on to define that reasonable caution as the Bolam Test
Bolam v Friern Hospital Management Committee [1957] 1 WLR 583 is an English tort law case that lays down the typical rule for assessing the appropriate standard of reasonable care in negligence cases involving skilled professionals (eg doctors): the “Bolam test”. Where the defendant has represented him or herself as having more than average skills and abilities, this test expects standards which must be in accordance with a responsible body of opinion, even if others differ in opinion.
I see a problem with what the standard has become. If everyone in my community orders a head CT for drunks with altered mental status, that represents an action by a responsible body of opinion. Does it mean it’s the right opinion? It does not. When the body of opinion has been contaminated by a persistent and progress fear of litigation, the standard defies the evidence, and itself creates irrational bars of achievement that can never be sustained. The responsible body has itself become irresponsible.
If we are to be a science driven profession, we must be allowed to maintain our integrity, without the fear of legal retribution for failing to uphold the irresponsible responsible body of opinion. Our standards are no longer based on science. When everyone orders the CT scan in drunks with altered mental status, the standard itself has become unreasonable.
Yet the marked deviation of the standard of care from the science of care marches on.
I have argued that standard of care is a local phenomenon. It is what ever the local community of professionals says it is, as they are the responsible body of opinion. The standard for evaluating a pulmonary embolism in downtown Chicago is not the same as the standard in rural New Mexico as it is in the jungles of Africa.
A lawyer previously responded that the local community should not set the standard. They argued that the standard should be a national, or perhaps an international evidence based standard. If science is science, there is no reason to believe that evaluating a pulmonary embolism in the United States should be any different than it is in the jungles of Africa. The most important factor in medical decision making if often not the science but the way the science is practiced on a local level.
The standard of care in McAllen, Texas is not necessarily the same as the standard of care at the Mayo Clinic. Is the cost difference legally driven or is it money driven at the local level? I suspect the contribution from both is enormous. Some argue that we should practice as Mayo practices. Mayo may be cheaper, but it isn’t cheap. I would argue that even under their payment model as a large salaried multispecialty organization with economies of scale, the ability to practice defensive medicine still thrives. Who says what costs $8,000 in McAllen but costs $5,000 at Mayo couldn’t be done for $2,000 if the victory against defensive medicine was won? I suspect it could, if physicians weren’t held to irrational standards by the unreasonable reasonable body of opinion.
If the standard in McAllen is to do a heart catheterization on everyone with chest pain, that is what the community has decided. If the standard of care at Mayo is to do a cardiac stress test, that is the standard at Mayo. If the standard in the African jungles is to do a history and physical, that is the standard in the African jungle? What is the right standard?
The right standard is the one that doesn’t get you sued.
Now, are all three standards of care based on science? No. They are based on what the community of physicians has decided should be done. There will always be a large disconnect between evidence based medicine and clinical medicine. It is not reasonable to do a CT scan to evaluate a pulmonary embolism in the jungles of Africa if that is not the standard, even if the evidence suggests otherwise. Clinical factors should always drive the medical decision making.
Some have argued the standard of care should be founded in evidence based guidelines and not local practice expectations from responsible bodies of opinion. Rarely are guidelines clinically relevant in the hundreds of decision trees physicians make every day in their diagnostic processes. Guidelines are based on studies with limited populations of patients whose neatly defined age groups have packaged disease processes. The realities of clinical medicine make many guidelines unworkable and unreasonable.
My post here is an example of the limited value of guidelines in the differential diagnostic process. Not only are the guidelines often not relevant, they are often contaminated by medical societies and other big businesses with a money driven agenda and stealth conflicts of interest.We must also remember that most guidelines are not based on science but rather based on expert opinion. All physicians are experts in their scope of practice and their opinions should therefore carry the same weight as the opinions expressed on academic based guidelines. Those that believe national standards should exist to drive standard of care practices across the vast clinical spectrum lack an understanding of what it means to be a physician.
Some lawyers wish to believe that having X, Y, and Z data points means doing A, B and C. Some wish to believe that failure to do so represents negligence as a responsible body of opinion would have done so.
I have never been introduced to this responsible body of opinion. I have no way of speaking for their recommendations. We have local culture driving decision making. We have limited national guidelines often corrupted by external influences. We have a legal system, who’s negligence is based on responsible bodies of opinion, opinions which have been established by fear driven medicine.
So what exactly does it all mean? When I order a lab or a test or a procedure or an x-ray to make my clinical decision making, I don’t sit there and think to myself, “What is the standard of care?”
I think to myself, “What is my expected action or reaction from doing this? What am I trying to accomplish?” I have never been introduced to this elusive responsible body of opinion. I have never been invited to a luncheon. This responsible body has never asked me out for a drink. I have never gone on a date with this body. I have navigated through ten years of clinical medicine and I have never once been formally introduced to this all knowing body of opinion.
By establishing the threshold of negligence as a vague responsible body of opinion, a concept which few physicians have studied, few physicians can quantify and few physicians trust, we have built exactly what the medical-legal-industrial complex has prepared for us: A high volume, high supply, high demand, high cost fear driven reality that we all pay for with out of control health care inflation.
If you think Mayo care is cheap, the time has come to consider that even the highest quality, lowest cost centers in this country could reduce their utilization of health care resources by 1/3, 1/2 or more if the fear of civil retribution for failure to diagnose was taken off the shoulders of passionate and devoted physicians from all fields of training and they were allowed the freedom to employ their differential diagnosis skills in a manner consistent with scientific inquiry and not a legal driven fear.
The longer we deny the fear, the quicker the end will be here.
Here’s a dumb thought: If you want to save costs on medical devices to the federal government, require a tax fee concessions of $4 billion dollars from the medical device companies to fund a health care overhaul.
Now either that $4 billion will get added to the cost of devices (and the patient/insurer’s tab) or the device companies will decide that they must pay the fee to maintain their current pricing.
Government pressures hospitals and doctors by paying less, so hospitals keep the heat on medical device makers to lower costs so they can make their margins.
It all sounds good, right?
But according to one analyst, it seems device makers would rather pay the fee than make their prices transparent:
But the mechanism for how devices companies might pay matters more than what they pay, according to Morgan Stanley analyst David Lewis. “A ‘flat tax’ is preferable, in our view, to targeted industry fees as our larger concern is the creation of more infrastructure intended to catalyze pricing transparency,” he said.
And so, with the fee, the government pays itself while the medical device prices continue to remain inflated.
Why do the patients always seem to lose with these government-mandated scenarios?
-Wes
*This blog post was originally published at Dr. Wes*
It’s no secret that doctors are disappointed with the way that the U.S. healthcare system is evolving. Most feel helpless about improving their work conditions or solving technical problems in patient care. Fortunately one young medical student was undeterred by the mountain of disappointment carried by his senior clinician mentors…
I am proud to be a part of the American Resident Project an initiative that promotes the writing of medical students residents and new physicians as they explore ideas for transforming American health care delivery. I recently had the opportunity to interview three of the writing fellows about how to…
I m often asked to do book reviews on my blog and I rarely agree to them. This is because it takes me a long time to read a book and then if I don t enjoy it I figure the author would rather me remain silent than publish my…
When I was in medical school I read Samuel Shem s House Of God as a right of passage. At the time I found it to be a cynical yet eerily accurate portrayal of the underbelly of academic medicine. I gained comfort from its gallows humor and it made me…
I am hesitant to review diet books because they are so often a tangled mess of fact and fiction. Teasing out their truth from falsehood is about as exhausting as delousing a long-haired elementary school student. However after being approached by the authors’ PR agency with the promise of a…
