30 December 2009

But what if I want to avoid the healthcare system as much as possible?

I've been doing a lot of thinking (and writing) about technology and health, and much of the conversations I've heard going on have to do with improving Health IT (HIT) with hospitals, clinics, and other healthcare providers. For those seriously ill, like ePatientDave, who are depending on their records to actively help manage their own care, this is a non-negotiable must-have. You've just gotta have access to your data, if you're going to have a hand in your own survival. There's no way around that.

I won't spend a lot of time discussing this. People with a lot more expertise and drive in the HIT space are discussing this actively. There's a lot of progress that needs to be made, but there's also a lot of focus turned to it, with new electronic medical records systems coming online and formal projects underway to craft solutions for the rampant issues that are keeping the "care" out of healthcare.

What I DO want to discuss, is another focus I've had. That focus is two-fold: 1) staying as healthy as possible, so I don't have to become dependent on the medical system, and 2) being able to manage my own health issues, should they occur, with the tools and information I need to maintain the level of daily functioning that I desire. Health concerns aside (and I do have some), I shouldn't be waylaid and held back in my dreams, goals and ambitions, because of health issues I can manage myself.

Now, I've had this dual focus for over 20 years, in no small part due to the botched healthcare I've received in the past. I lost some of the most vibrant years of my life to flawed diagnoses; in my early 20's, I was told I had a serious, possibly life-threatening illness by medical professionals who even after many, many months of testing, had no conclusive, substantiated evidence that I really had what they theorized was vexing me. I spent my early 20's living in mortal fear of spontaneous internal bleeding, skin discoloration which would disfigure me for life (and never go away), debilitating pain, and degeneration of my connective tissues. When everyone else my age was running around doing what one normally does in their early 20's -- working jobs that would form the foundation of future career paths, going out on the town with friends, enjoying social and outdoor activities -- I was holed up in my apartment, laying low, trying to keep my stress level as low as possible.

I was intensely stressed, in those days, and I realize now that the stress of the diagnoses I received -- at first, discoid lupus erythematosis, then sytemic lupus erythematosis (nasty stuff, as the names imply) -- probably put a lot more strain on my system that may have caused many of the symptoms they attributed to the condition. At the time I was undergoing tests, there was not yet a conclusive rule-in test. Everything was rule-out, back then, and they couldn't find anything other than lupus, to explain my symptoms -- skin rash above my right eye that would not disappear, fatigue, pain in my joints, general weakness, and more.

So, I got assigned a diagnosis of lupus, and it was off to the races.

What a slog that was... all those tests, all those consultations... and nothing conclusive coming of it... how maddening for everyone. I followed their directions to the "T", learned all about lupus, altered my lifestyle, took my meds, did everything I possibly could... but the pain just got worse, the fatigue was crushing, and my early 20's slowly faded into a fog of pain and disorientation from the meds.

Now, I don't bear anyone ill-will in that drama. (I used to, years ago, but I've since given that up as a pointless waste of time and energy.) I spent a lot of time seeing some of the best specialists in the country, but none of them had more to offer me than a prescription for anti-inflammatories and other meds that would buffer my stomach. My symptoms weren't budging, and I couldn't get any relief. Thinking back on that time, it must have been terribly draining for those docs to see person after person in such bad shape -- I shared a waiting room with deeply suffering people many a time -- and the lack of straightfowardness about my condition must have driven them nuts. I really felt for the docs I saw, back then, and I still do. And at a certain point near the end of my active involvement with them, I asked myself -- and them -- what I was doing there, if they could not help me?

They didn't have an answer for that, aside from saying they could try to reduce my symptoms. But their attempts had not been successful to that point, and I was wearing thin, with regard to meds.

Ultimately, I stopped seeing the docs. I stopped seeking help in the medical establishment. I focused more on the basics -- quitting smoking (yes, it can be done), eating better, and making rest and good sleep hygiene a priority. These basics have continued to serve me through the years, and when I start having symptoms again -- a small rash that appears and won't go away, intensifying joint pain, fatigue and weakness -- it's pretty sure sign that I'm neglecting myself.

I guess I'm just one of those all-or-nothing kinds of people. If I'm not all-in, I'm all-out, and I pay a steep price for self-neglect. And sometimes I end up at the doctor in the same state I was before -- me looking at them, leery of the medication they're suggesting, and just wanting my life back... them looking at me, not sure what they're supposed to do for me...

That being said, for this coming year, I'm prioritizing pro-active personal health management. I am totally behind the initiatives for getting health records in shape and making health information shareable.

But one of the unfortunate off-shoots of making data accessible, is that it's vulnerable to corruption and hijacking. A mal-formed database can end up revealing your personal data to someone you don't want to see it. Or a non-secure system can expose sensitive information that should never be seen by outside eyes. People in vulnerable positions are even more vulnerable, when the stewards of our data are nonchalant about our privacy needs and make light of the need for a thoroughgoing security/privacy policy.

And another one of the unfortunate off-shoots of all the HIT work, is that while it may empower me as a patient of a hospital or PCP, it is predicated on the assumption that I am actively engaged with a hospital or PCP. If I'm not "in the system" what then? What tools do I have to manage my own health on my own, outside the purview of the formal system? And what tools do I have to share the information I wish to share, when I wish to share it?

Will I be empowered only if I'm actively participating in a healthcare system which has not fully cared for me on numerous occasions, and has yet to prove itself as a 100% trustworthy partner in my health and well-being?

These are just some questions I have, and some concerns that nag me. I'm not writing off the whole HIT-iverse, and I'm not disparaging it. I just would like more options and more choices. And if I can't find them "out there" I will come up with my own system(s) that suits me just the way I need them to.

28 December 2009

Who's afraid of the health care conscience clause?

Does anyone know the fate of the conscience clause that went into effect on 1/20/09 that allows physicians and other health care workers to refuse to care for/treat people seeking help, based on their own religious beliefs?

Under the rule, workers in health-care settings -- from doctors to janitors -- can refuse to provide services, information or advice to patients on subjects such as contraception, family planning, blood transfusions and even vaccine counseling if they are morally against it.

CNN ran a story on it last February (where I got the above quote), saying White House set to reverse health care conscience clause, but I haven't heard about the fate of the regulation.

I assume that no news is good news -- for the folks who hoped it would be repealed. That news would be not-so-good for the folks who looked to that regulation to protect their beliefs and desire to live their lives and pursue their professions consistent with their faith.

Like combining church and state, mixing faith with professional practice can be a tricky business. On December 16, 2009 a Medical group CEO quits (the) AMA in protest. I can understand why he would do so. The AMA stance was clearly not consistent with his own beliefs, and what choice did he have, really? If you don't agree with your governing body, and you can't change it to be more in line with your beliefs, then it seems the only really honest thing to do, is leave. Apparently a lot of people are doing that, according to the CEO "that AMA's membership has dropped since the 1960s from nearly three of four practicing doctors to closer to one in five."

Which is fine for doctors. But what about the rest of us? What about those of us who are not aware of our doctors' religious beliefs and -- not making any judgments about who's right and who's wrong -- we find out too late that our doctor does not believe in certain procedures that we believe may preserve our health and save our lives? What do we do? Seek out a second opinion, certainly, but how do we find out in advance if the next doctor holds beliefs that are consistent with our own? If we are in need of a procedure that one doctor would do, which might help us, but another doctor would not even remotely entertain (or possibly even discuss) due to their ideals, how do we find out what those ideals are before we enter into a relationship with them? How can we do our due diligence and make sure that we're engaging with a physician who actually can help us?

Now, I'm not here to call people right or wrong, or claim that one belief system is superior to another. I grew up in a very conservative part of the country, and I respect people's rights to believe what is in their hearts. You can't argue with a conversion experience, and people who think that conservative folks can be won over to another side through heady, intellectual reasoning alone, have a rude awakening ahead of them.

But objectively speaking, I prefer to go to a doctor who won't refuse to treat me based on their religious beliefs. I am queer, after all. I live with a woman, and I have been committed to her and our life together since 1992. We are legally married in Massachusetts (not that it makes any difference in Pennsylvania, where I was raised). Our finances and our daily schedules and our very lives are more closely entwined than conjoined twins. You literally cannot affect one of us without affecting the other.

Of course, outside my own circle of like-minded folks, in many parts of this country -- indeed, the world -- my relationship is one of sin and iniquity. It is an affront to God, and to the natural order of things. It is an abomination that some believe will condemn me to eternal hellfire and damnation. Some believe that I have deliberately chosen this life of sin, and that my choice condemns me to eternal separation from God -- unless I confess my sins, vow to change my ways, and take to a strictly straight-and-narrow path of righteousness that leads me to the rewards of eternal life.

And I know from personal experience that in some parts of this country -- and in the world -- there are people who believe that my soul is safer in heaven, after having confessed my sins and changed my ways, than continuing to life in illicit iniquity here on earth. I also know that in the church where I've heard it said out loud, "I would rather my child be dead, than be homosexual, because at least then I would know they were with God," there were doctors who attended that church, some of them quite devout.

Now, I'm not here to say who's right and who's wrong. I'm not here to criticize, but to observe. What people believe, and why, is one of the great mysteries in life, and it's not my place to judge others for their strongly held beliefs. But when I go to the doctor - whether I agree with them or not - it's my hope that I will have access to the type of care I am seeking. And it's my hope that they will do everything in their power to help keep me alive.

Now, I don't expect health care providers to utterly abandon their beliefs in the process of helping me. I would never ask someone to willingly violate their own principles. But I do want to know if my beliefs are consistent with theirs, and whether we have the same medical perspectives and priorities. People's beliefs can run very deep -- and very hot. And if you aren't aware that your doctor harbors grave misgivings about helping you continue to stay healthy and whole, because they don't believe that you are doing God's will in your life and you're better off in heaven than staying in sin on earth -- or they deny you access to a procedure you desire because they don't believe in it -- well, then it gets problematic.

As with many issues with me, this is a data issue. There are lots of doctors in the world, and there are lots of different ways of understanding why we're here and what we're supposed to do with ourselves. And for every person who doesn't agree with me or has grave misgivings about helping me, there is surely someone else who does agree with me, and who has no hesitations about providing me with certain types of care. The trick is finding them. Maybe there's a great database in existence, containing details on doctors' and other health care providers' religious beliefs, a list of what they will and will not do in the line of helping their patients. Maybe there's a vast info warehouse that holds details on the ideologies of everyone who's in the care-providing chain -- from doctors to janitors -- so folks on the margins of mainstream or with alternative religious beliefs, as well as smack-dab in the middle of the range of popular acceptability, can decide whether or not to seek care from a certain physician or a certain hospital. But I'm not sure there is.

I wish there were, though. I wish there were some data repository where I could locate docs who are "friendly" to me -- as well as the ones who are not sympathetic with me for religious reasons. I wish there were some place I go to could find out if the hospital I might be admitted at has nurses or janitors or lab techs who have the job of helping someone like me, might have some reason not to. I wish there were a database I could simply query to find a doctor who has no moral qualms about keeping me alive AND who is open to me being an ePatient -- using email and social networking and trusted online resources to better manage my own care.

I'm not trying to be discriminatory in a negative sense, but in a positive sense. Freedom requires responsibility, and what better way to foster responsibility, than by giving both caregivers and patients access to each others' ideological profiles? I am genuinely interested in ensuring that people of all faiths and outlooks have access to quality care that is consistent with their world view and values. I'm also genuinely interested in ensuring that doctors who walk a path of faith and who take that faith very seriously are able to practice medicine in a way that is consistent with their spiritual values. There are an awful lot of doctors in the world, with a variety of ideals and values. And there are many, many different patients with a wide range of beliefs. We just need to find each other more easily.

From where I'm sitting, the problem is not whether doctors and patients are properly regulated/protected or not... it's a matter of whether the right doctors are paired up with the right doctors. And vice versa.

Imagine if there were such a data store that was easily accessed, accurate, up-to-date, and easy to use -- then, at the 11th hour, when so much is on the line, well-paired doctors and patients alike would be able to provide and receive care that is consistent with both their needs and their consciences. They wouldn't have to have all sorts of extraneous (and possibly unnecessary) ideological dramas and crises over life-and-death issues (which are of course never easy to begin with). They could both know that they were dealing with another person who was on the same page as them, who both acknowledged, respected and understood their points of view. And being on the same page could clear away yet more of the anxiety that comes along with healthcare and relying on someone outside yourself for your continued well-being (or possibly death with dignity).

If a doctor or nurse or technician is not going to treat me because they firmly believe that the way I live my life is not in keeping with God's will for humanity, and they also believe that life in the hereafter is far more important than life on this earth, I have no argument with that. I understand many people feel that way, and I don't want to deny them their right to live consistent with their faith.

But at the very least, I want to know about it ahead of time, so I have a fighting chance to stay alive with the help of someone who won't deny me care, based on my "lifestyle choices."

26 December 2009

Yes! At last, a real conversation with a doctor!

On Christmas Day, I got a great present -- an extended conversation about the issues of healthcare reform... with a real-live doctor. This guy is a recent addition to the family, the freshly minted husband of my partner's niece. He's doing his residency at a local hospital, and he's working in internal medicine. He's got an osteopathic background, which I find fascinating. Nothing against AMA docs -- MD's -- but yesterday I had an actual discussion with a doctor about the innermost workings of the body, how it fits together, how it interconnects, and what some of the root causes of disease and healing are.

He also said something I haven't ever heard an MD say -- that the human body is built to regain balance and to heal.

Most of the MDs I've ever talked to, have held to what seems like a "party line" -- we don't know enough about the body, it's a mystery, nobody understands it for sure, and medication is the one sure way to address issues that come up. Now mind, I'm coming from this from a patient's point of view, and I could be completely wrong, but that's just what I hear coming from the allopathic ("regular" mainstream medicine, as we often think about it), versus osteopathic camps.

Anyway, this doc and I had a great discussion about the ills of this new healthcare reform process we're all going through at the moment. I say "we're all" because we are ALL affected by this change. No one will escape it -- except apparently the people who are creating it, who have their own medical benefits package that will apparently be unaffected by this legislation.

I don't pretend to have all the answers, and I'm sure I'm lacking some really critical information. The whole issue is huge and vast and complex and as varied as the humans who are influence by it. And by the end of our conversation, in which he laid out very clearly all the different reasons we should all be deeply concerned about this, the bottom line for me was that when it comes to my health, I cannot -- and will not -- surrender ultimate control to anyone except myself.

Washington is going to do what it's going to do. Insurers are going to do what they're going to do. Doctors are going to do what they're going to do. I have no control over them. I can offer some ideas, but the systems which are in place which gave rise to the conditions we are facing right now are simply too vast and too intricate to influence on my small scale. Fixing what's broken will take time. A lot of time. And after my discussion with the doc, I can assure you, I'm not holding my breath.

Now, I could fret and worry and concern myself over the impending doom of healthcare reform. But I'd rather do my own healthcare reform, and take matters into my own hands. I'd rather have myself to thank (or blame) for my health and happiness. I'd rather be responsible for my own well-being, not depend on an official governing body to "help" me. The chances of any government agency being able to truly help me are slim to none. Certainly, it helps to have insurance for specialists and extreme situations. But for overall health and well-being, I'd rather take those matters into my own hands.

I actually have been, for many years. About 20 years ago, I had an extended bout with extreme, crippling, inexplicable joint pain. It wreaked havoc in my life at a time when I "should" have been getting on my feet with a career and savings account, and all the seeds of my future adult life. I was unable to work full-time, I was unable to do much of anything, aside from rest and move slowly from one carefully selected activity to the next. The experts -- and I went to some of the best in the nation -- were unable to offer me any conclusive answers. And the medicine I was on was playing even more havoc with my life.

Ultimately, I had to stop seeing them and take matters into my own hands. Change my life. Change my diet. Quit smoking. Start taking care of myself. Get my act together. Get on with my life, pain or no pain. And I did. It wasn't fun and it wasn't easy, but I did it. I've still got intermittent issues, but now I know how to handle them, and I do. I track my daily health. I exercise regularly -- as in, daily, not several times a week. I don't just watch what I eat -- I actively manage my health with the food I eat. And I don't expect anyone else to supply me with The Secret to a long and healthy life. I pay attention to what long-lived people do. I study what folks do to stay physically and mentally healthy for 100+ years. I make a point of tracking my progress with issues that come up. And I don't quit working towards improving what I can. There's no end to what I can improve. So I'm usually well-occupied.

I have been blessed to not have to deal with cancer in my body. I have been blessed with a strong constitution and an even stronger will. I have been blessed with good sense (for the most part ;) and a desire to do better the next time. And I've been blessed with an insatiable interest in useful information that I can put to good use.

I'm fortunate with what I started out with -- but if I didn't make the effort to do something with it, it would all go away. Determination and willpower and constant improvement don't happen on their own. Even the largest reserves will wither, if not attended to... and the smallest speck of potential will expand many times over, if given the proper attention and priority.

I still have a lot of thinking to do about my conversation with the doc, yesterday. There was a lot that was said that I need to noodle through. But when all is said and done, the thing I'm taking away from that discussion is that the government is really NOT my preferred healthcare provider.

I am.

24 December 2009

Listening for more

Not long ago, someone asked me where I've been for the past few years. They read something I'd written, and they liked what they heard/saw. They seemed surprised that I haven't been more of a presence in the healthcare discussion.

The first answer that came to mind was, "I've been dealing with health issues in my family," which is all too true. Like so many Americans, I've had some pretty pressing health stuff going on in my immediate and extended family. It's demanded a lot of focus to sort it all out, but sort it out we did. As a lot of people know, taking care of health and navigating the medical system can take a lot out of you. It demands rigorous attention to detail, at times, and we don't often have much left over for other activities... like blogging.

Yeah, I've been busy. With the kinds of stuff nobody wants to have to be busy with, but so many of us are.

Then I thought about it some more, over the past few days, and it occurred to me that the second part of the answer is, "I've been thinking." One of the big pieces of the coping process for me has been pondering what's gone down, examining it, analyzing it, figuring out what it all means to me. I'm not perfect, by any stretch -- as an earlier post about my relationship with my doctor clearly shows. I have a lot to learn, and I have a lot of progress to make, in terms of establishing and cultivating the kind of relationships I want to have with the doctors and specialists in my life.

For me, the lion's share of making progress with health concerns is understanding the nature of the problems at the root of my (and others') discomfort and distress. Until I understand them and can extract some sort of meaning from them, I'm adrift in a sea of details... and non-actionable data.

I can't make much progress towards understanding what I need to, if I don't take time to closely consider what's taken place in my life... and I really like to make progress. So, I stop and think, examine and wonder, and if I'm lucky, I come away with something meaningful and useful and -- most importantly -- actionable.

But when you're in the midst of crisis, it's easy to get stuck inside your head. Being introverted by nature, I tend to first look within for the answers to my questions. Which is fine, until the wheels start to spin so wildly that they drown out everything else around me.

But sometimes, inner awareness is not enough. Sometimes you've gotta listen for more.

Which is what I'm doing now. I'm visiting extended family out of state, and lo and behold, I'm in the midst of a bunch of doctors and healthcare professionals. I'm also smack-dab in the middle of a part of mainstream America that is far from Massachusetts, in many ways. It's not Better, it's not Worse... it's Different. And it's a great opportunity for me to stop and listen to what folks here are saying about their health and healthcare, from a point of view that's shaped by circumstances very different from my own.

I've been going at a pretty brisk clip at work, for the past couple of months. And my head has just been spinning with all the thoughts I've got about how we care for ourselves and keep ourselves alive. Now is truly a wonderful opportunity to take a break, slow down, and listen to what people are saying about their health and how they care for it.

I have the opportunity to spend a few days with a new doctor, who is absolutely livid about the healtcare reform activity in Washington. I have the chance to find out what makes him so angry and so concerned, and what he thinks should happen instead. I have the opportunity to sit down and share a cup of coffee with a medical school registrar who's contemplating the prospect of retiring in the next 10 years or so, and having to shell out $1,000/month for health insurance for the rest of her born days. I have the opportunity to witness how people in this part of the world live, eat, sleep, and generally take care of themselves, and absorb that information into my world view.

It's a great opportunity to get out of my own head, and I don't intend to pass it up. This is a chance to widen my view, round out my considerations a little more, and gain a greater understanding about what it means to be alive, today -- and want to stay that way.

What a great present this is.

22 December 2009

Opportunity awaits...

A number of years ago, I spent the morning of the day before Thanksgiving in the Emergency Department. My partner and I had been out with friends the evening before, and she'd gotten scratched by a rusty piece of metal. I cleaned out the wound as best I could when we got home, but I could still see some little pieces of rust that I couldn't get to, and we both thought it best if we had a doctor take a look at the nasty cut -- she also needed to get her tetanus shot updated.

Our ED experience was -- as is often the case -- less than stellar. There wasn't much staff around, that day, and since Laney's injury wasn't life threatening, we sat helpless and idle for more than 2 hours, calculating what time we would arrive at her family's place. Under better conditions, we would have been making a serious dent in the 12-hour drive to southwestern Virginia. As it was, we were stuck.

Eventually, Laney did get to see a doctor, and he complimented me on how well I'd cleaned it out. But it was good that we went -- she had the wound cleaned with antiseptic and a professional eye, she got her tetanus booster, we regrouped, and headed down the road to Virginia.

In the years since, we've had a few other emergency room visits. One recent visit comes to mind -- while winterizing my home, I slammed my hand really hard on a window sash, and it swelled up quickly. I could move my fingers pretty well, and I didn't have too much pain, but the swelling alarmed me. Even when I put ice on it, it didn't look good. And it started to ache and pain me. Now, I work at a keyboard for a living, and I can't afford to lose the use of my hand -- or neglect an injury that might cause me problems later. So, after some deliberation, we reluctantly went to the ED.

The wait there was something in the range of four hours. It took place on a Sunday afternoon, and I wasn't overly pressed to do other things, but still, the loss of four hours on one of my precious days off was troubling. That, and being sequestered in a room with people who were sick-and-coughing. When I found out that I hadn't injured myself seriously, and it was basically a contusion that didn't require an x-ray, I questioned the wisdom of going in the first place. But the chance that I'd done real damage to my hand -- which is my bread-and-butter -- wasn't something I was about to mess around with.

I must admit, I'm not a fan of visiting the Emergency Department. I lost someone very dear to me, nearly ten years ago, when they went to the ED complaining of stomach pains, and they weren't seen until their intestine had ruptured and they were irreversibly, mortally ill. Going from the ED to the OR and never regaining consciousness... it's awful, and that tragic (and possibly preventable) loss will stay with me all my born days. I often wonder what might have happened, had the ED staff taken the situation a little more seriously.

I also work with a guy whose wife fell and was bleeding from a scalp wound. She was fortunate to be near a hospital when she fell, and when he got the call about her accident, he hustled out of work to go meet her at the ER. When he got there, he found her sitting with a clipboard and a form, and a handful of blood-soaked paper towels held to her forehead. He composed himself and approached the folks at the main desk and asked if they had any bandages, since his wife was bleeding all over their waiting room. The attendant opened a drawer beside him and pulled out a big gauze bandage -- which had been right beside the stack of intake forms. Hmmmm... priorities....

Then again, I have had other ED visits where the person I took in was whisked away with all due haste and given immediate, thorough care. I was also allowed to go back into the treatment area with them, which was very helpful for them. Those were positive aspects of generally negative experiences, and I'm very grateful for them. On the downside, we were both left waiting with the beeping machines and the it-takes-time-to-kick-in medications... waiting... waiting... waiting... till the doctor came to check in. Our interactions with the ED doctors will be the subject of another post -- this post is about the wait.

Now, sad stories about ED staff responsiveness are something we probably cannot fix anytime soon. People are people, and you can't legislate personal priorities. Things happen, and tragedies take place every day, due to complex, interconnected issues which are not easily addressed.

There is one area, however, where I think we could make progress - the use of time spent waiting in Emergency Departments.

Now, I'm big into time management -- I have a ton of things I need to get done, every day, and I generally get most of them done. If I don't, I know there's something wrong. And when I lose four hours to just sitting idly, when I could be getting something meaningful accomplished, well, I feel that loss. Surely, there's a better way.

According to the CDC's web page on Emergency Department Visits, here's the skinny on our national relationship with the ED:

(Data are for the U.S.)

* Number of ED visits: 119.2 million
* Number of ED injury-related visits: 42.4 million
* Number of ED visits per 100 persons: 40.5
* Most commonly diagnosed condition: injury and poisoning
* Percent of visits with patient seen in fewer than 15 minutes: 22%
* Median time spent in emergency department: 2.6 hours
* Percent of ED visits resulting in hospital admission: 13%
* Percent of ED visits resulting in transfer to a different hospital: 1.9%

Source: National Hospital Ambulatory Medical Care Survey: 2006 Emergency Department Summary, tables 1, 10, 12, 21, 25

Now, I know median numbers can be misleading, and the time spent will necessarily vary from person to person, but if 119.2 million Americans are spending an average of 2.6 hours in the emergency room, well, that's a heck of a lot of time we're spending waiting for assistance.

Even if we're seen right away, we can also spend a fair amount of time waiting for our care to be completed. Now, I know things take time in the ED. I'm not disputing that. But the hours we spend could be better used -- for our treatment and our health.

Enter the ED Care Champions

Imagine, if you will, that a hospital has people on staff who come to assist patients who have come to the emergency room. These "patient assistants" have some medical (possibly nursing) training, and they have been trained to interview people who have come to the ED to find out exactly what happened, find out about existing medical conditions, flag potential issues, like allergies or sensitivities, and then translate that all into a summary for the attending physician (who's not going to have the time to establish personal rapport to read body language and understand the whole person, anyway). They're versed in the effects of trauma on cognition (remember, injury-related ED visits = 42.4 million, and that's a lot of trauma), so they can deftly coax the pertinent information out of the visitors, and create a patient profile that actually makes sense to the attending physician.

What's more, they are educated in how to explain medical conditions and terminology to average people like you and me. So, after the patients are seen, if they have questions about what needs to happen, they can check with the patient assistant. They can walk through the info the doctor gave them, or discuss their next steps, and get clear on what they're supposed to do -- and why.

Imagine, if you will, that these patient assistants have printed information available from a trusted source (possibly the hospital itself) about a wide variety of conditions (it wouldn't need to be already printed, like a pamphlet -- they could pull it off a website they access with their laptop, and then print copies of the info on the printer that's sitting near the intake desk). Further, they have lists of related, reputable, trustworthy online resources they can give to the patient, so they can educate themselves and manage better over the long term.

In the process, these ED Care Champions can help patients more fully understand their situation, and better conceptualize the next steps of their care. And they've both hastened the treatment process by giving the doctor the exact information he/she needs to act quickly and accurately, while reinforcing the dignity of the incoming patient. What's more, these ED Care Champions could pick up the slack left by overloaded reception folks who miss important things (like getting gauze bandages to patients who are bleeding profusely) and fill the gaps that invariably arise when busy people are given more info than they can process.

Maybe I'm crazy, but it seems like a good use of time. But who would pay for it? Why not insurance companies? Why not hospitals? Actually, the insurance companies might make more sense -- not because it adds to their costs, but because it could cut down on claims (and their long-term expenses) by assisting with treatment and care, from the get-go -- prevention and immediate action as a sound way to avoid later complications. Getting people on the right foot, with regard to their care -- not to mention giving the doctors additional tools and information to help them diagnose and treat -- seems like a long-term cost-saver to me.

But, you argue, the insurance companies will never buy it? I disagree. Some insurance companies have "care champions" who call insured individuals (after they've been diagnosed with a chronic condition) with regular check-ins to see how they're doing. These care champions act as coaches and resources for chronic conditions, and they make providing info and counseling an integral part of extended health care. The care champion model seems like a good thing to integrate into Emergency Department care -- especially when people are just sitting there, marinating in their discomfort and difficulty, wondering when someone is going to see them, getting antsier and antsier, and possibly increasingly combative. I don't have the stats on it, but it's my understanding that just talking to someone can reduce agitation and physical pain... which contributes to communication... which facilitates good and speedy care.

There's always the possibility that I'm oversimplifying things, or I'm not fully understanding all the issues at stake. But why not consider the idea? It would definitely create jobs -- and these would be meaningful jobs that connect people with other people, helping them in real and substantive ways. Sure beats standing in front of a styrofoam cup machine for 8 hours (which I have done, so I am qualified to speak to that). These would be jobs that fill a truly pressing need, and that give people a sense of purpose and belonging to something greater than themselves. These are the kinds of jobs we need, and this is a need that's waiting to be filled.

Personally, I think that implementing something like this wouldn't have to be overly complicated or difficult. I'm not saying it's a piece of cake -- there needs to be prioritization and organization around it, and people would have to think carefully about how to do it best. The ED Care Champions would need to be educated in a range of areas -- medical, psychological, technical... and more. And it might be really personally taxing work, so the EDCC's wouldn't be on shifts longer than 4 hours in the ED -- with remaining hours spent on reviewing cases and administrative housekeeping. But there's already a seed of that paradigm in the existing insurance company care champion model -- why not extend it to ED Care Champions, too?

Seems like a good use for those 100+ million unused hours.

Feedburner Feed now Available

ePatientDave suggested I get on the Feedburner train, and so I have -- here's the feed url: http://feeds.feedburner.com/KayStoner-TheArtOfLivingWell


20 December 2009

I would just LOVE to be more engaged with my PCP

And I think she would like it, as well. But every time I show up for what is even a routine visit, she tells me she's going to "get in trouble" for spending too much time with me. She's supposed to sail through the appointment, taking no more than 15-20 minutes to find out what my issues are and what I should do about them (with or without medication), and that's supposed to suffice.

Except that it doesn't. Because 1) I need more time to explain things to her (I have a lot in my head, you see, and I don't shy away from complexity, and 2) she needs the time to really find out what's going on with me, aside from the rash or the spreading poison ivy or the upper respiratory infection, and 3) I need more time to clarify with her the things she's telling me, 'cause unlike some folks, I have a real and pressing need to be involved in my own healthcare, my own life. I need to be WELL, on all levels, not just not-sick (or asymptomatic).

I have tried different approaches -- like making notes about my situation that I can share with her. This is an important thing for me to do, because I have a nasty habit of forgetting important details in the moment.

It's so predictable, you'd think I could stop the cycle. Before I get to the office, I am usually pretty clear about what's up with me. But then I get in there, I get talking to the staff (who are all very nice and also get in trouble for not moving fast enough, because they take too long with me - but we're actually having a human exchange, and it's not taking forEVER, so I don't see why that's so awful)... and I get caught up in scanning through the pharma-company-supplied pamphlets and fact sheets that are scattered about... and then the doctor comes in after a few minutes and asks me how things are in general, and by the time we get down to talking about what's going on with me, I am hopelessly distracted, and all I can do is shrug, sometimes. It's sad, I know. Very sad.

So, I've tried writing down notes and bringing them in. But my doctor tells me to put them away and just talk to her. As though that will be easier for me. It's probably easier for her... tho', come to think of it, I'm not sure why she prefers partial information to a complete picture? She also appears to get a kick out of me showing up with information I found online. It's not like I'm trolling around about.com (my apologies to the guides who work hard to put useful info up there) and relying on amateur infopreneur articles for my sources. I tend to seek out reputable sources, and I take the time to consider what I'm reading. But my doctor just rolls her eyes and says "internet" like it's a joke.

My health is not a joke. My survival is not a joke. My life is not a joke. If I can't get the right information from her -- because she doesn't have time to spend with me -- I'm going to seek it out elsewhere.

Now, I don't mean to beat up on my PCP. Overall, she gets high marks, and she's the best doctor I've ever had. I have awful stories about past experiences, including a multi-year spate of extended (inconclusive) tests in the early 1990s -- I think I'm still trying to build back my blood supply ;) -- and a string of doctors who dismissed me outright or made fun of me or refused to honor my genuine inquisitiveness.

Maybe I've just been walking around with a sign on my back that says, "Dear Doctor, please ridicule me -- and bill my insurance company for the hour you spend laughing at me."

Well, anyway, it's Sunday night after a long day of shoveling 5 inches of fluffy snowfall off my deck and stairs... snowblowing the driveway, and raking my roof, so I'm a little punchy. But really, I would love to be more involved with my PCP. I'd love to be able to email her with questions, or just raise a question without her looking over her glasses at me with amusement that I'm daring enough to guess that the spreading rash over my legs and arms looks like the pictures of poison ivy I've seen online, and my symptoms match that condition. I would love to be treated with dignity and respect, not grudging accommodation, and given the time I need to fully understand what she's saying to me about how to keep healthy... and discuss the ramifications of her prescription with her. (Let the record show that I will NOT be talked into taking prednisone again -- the 'roid rage is just not worth it to me -- I'd rather itch.) I would love to have her get to know me and my quirks and foibles, so she can understand what I'm saying and what it means, without taking it out of context.

All these wishes... I'm not sure if it's going to happen anytime soon, or if it will happen at all. Maybe they're as fanciful as a letter to Santa. But they feel pretty real and pretty important to me. I'll just keep trying. The one New Year's resolution I know I can keep is just that -- keep trying.

Okay, now you can comment

I'd been in a non-communicative frame of mind for a while, so I had turned off comments on my posts. All the monitoring got to be too much.

Now that's changed. Please comment at will.



19 December 2009

Google chief: Only miscreants worry about net privacy

I realize the irony of this post -- I'm putting it on Blogger, which is owned by Google, and this is a post questioning the position of Google on privacy.

With any luck, someone will take notice and think seriously about the privacy issues I'm about to raise.

One of my favorite sites is The Register, which is full of geeky, nerdy news. Their tone is... well... honest. And it doesn't take itself overly seriously, which is nice in this IT world where everyone, it seems, takes themself very, very seriously.

Anyway, I happened upon this post about Google's chief saying basically that only miscreants worry about net privacy. Huh.

I'm not sure what worries me more -- the fact that he equates the need for privacy with wrong-doing, or his seemingly trusting attitude towards authorities who "need" to know people's details, or his off-handedness about what is truly a problematic and potentially disastrous aspect of people's lives.

Here's an example of why privacy concerns can genuinely be about protecting innocent people from authorities who mis-use what they know:

Many years ago, before I got into web development, I was a staff supervisor at a mid-size professional services firm in downtown Boston. I was third in command in the firm administration, reporting directly to the Executive Director and the Director of Human Resources. The firm was in a bad way, financially, and the Director of HR had a penchant for finding out who she could cut from the staff, so she could 'save the firm money' -- and also boost her annual bonus by reducing 'overhead'.

Well, one of my staff (I'll call her Tammi) was a woman who had battled breast cancer several years before. She was the best one I had on my team, and I would have been sunk without her. She had ostensibly won her battle with cancer, and she was in good shape, as far as anyone could tell. That was fortunate, because her husband had been out of work for a while, and she was the sole breadwinner for their family of 4. They had two small kids, and her paycheck was the one thing that kept them afloat.

Well, one day the Director of HR says to me, "How's Tammi doing?" I said she was doing fine, and she was doing a great job. The Dir of HR tells me, "Well, is there anything she's not doing well?" Long story short, she was fishing for a reason to fire Tammi. I asked her why, and she told me -- flat out -- that the firm was concerned that Tammi might get sick again, and if that happened, they'd have to pay short-term disability for her, and they didn't want to pay it. Basically, the firm couldn't afford to have her get sick. So they needed to fire her.

For no reason other than that she had health issues they didn't want to "gamble" on. They knew she had been sick. They knew there was a chance she might get sick again. They didn't have the heart/ability/resources/integrity to willingly employ a perfectly capable and productive employee, because she might get sick.

I spent the next year fighting for Tammi's job -- there was no way in hell I was going to let her go because of some off chance that she might become sick again. She was the best staffer I had, and she knew her stuff. There was no way I was going to put her and her two kids and husband out on the street, because of what might happen.

Unfortunately, Tammi did get sick again. And she did pass away in the time that I was there. But when she passed, she was not unemployed because of what some HR director decided was most beneficial for a firm that had spent so much on booze for the Tall Ships reception they threw for their clients, that they had cases and cases of wine and vodka sitting in storage for years after that.

I left the firm a short time after that. I was through fighting the good fight that should never have to be fought.

So, when I think about what the Google chief has to say about privacy, I think of Tammi, and I wonder if he has any clue that this sort of "staff management" behavior is unfortunately not uncommon. It's patently illegal. It's indefensible. And there are protections under the law. But if someone finds out that you've got a chronic health condition... or you suffered a TBI or developed PTSD in Iraq or Afghanistan... or you suffer intermittently from some inherited illness... people can -- and often will -- find other reasons not to hire you. I have heard many stories from people who made the unfortunate mistake of revealing too much about themselves online -- including health problems -- only to find themselves dumped by people they were interviewing with. (I heard recently that a website for returning vets got started, to educate employers about the challenges that some vets face when they return. The site, I read, was full of good information, but employer responses were less than enthusiastic.)

Now, if someone posts some snarky, bitchy blog post that contradicts their shining example at a job interview, they have only themselves to thank for having a job offer rescinded. But if someone trusts a source like Google to store their health information -- and I mean ALL of their health information -- and some unscrupulous individual with connections or a 'reason" to access the data, gets hold of it, the havoc wreaked can be considerable.

Having your health information stored by a company which equates privacy with a need to conceal wrongdoing... well... let's stop for a moment and ponder the ramifications. Where's their impetus to protect what they've got? And do they even understand the true needs for privacy, versus just wanting to hide out? Do they get the privacy thing at all? And if they don't, what the heck are they doing, storing personal details which can be damning -- in no small part because people don't know enough about how successfully people can deal with certain conditions, and a scary-sounding condition can look pretty alarming and discouraging to a prospective employer... especially if they Google it and find all the worst-case scenarios clearly described.

Don't get me wrong -- I love Google for many, many reasons. But when they get into the business of storing some vitally sensitive information, and their CEO says, "If you have something that you don't want anyone to know, maybe you shouldn't be doing it in the first place," then personally I'll seek other solutions for my health records storage and management.

Like my own hard drive.


P.S. My thoughts on using social networking and online communities to troubleshoot serious health issues will come in a later post.

15 December 2009

Bringing your best

Don't do it for your company. Don't do it for your loved-ones. Don't do it because it's what you are supposed to do and your annual bonus hinges on it.

Do it for yourself. Because the more you bring your best, the better you get. The better you feel. The better you are.

Bring your best for yourself.

05 December 2009

Why the best people are sometimes sent away

Layoffs, layoffs, and more layoffs. 'Tis not an easy time to be employed, these days. Who can say, how long any of us will be? I heard recently of a layoff that took folks by surprise. Most layoffs do, for some reason. We like to think that we are valued, that our work counts for something, that someone notices what we've been up to. Sadly, that seems to happen less and less. But still we hang onto the belief that, well, we will be spared in the next round of downsizing.

I recently finished reading The Art of Possibility by Ben and Roz Zander. Much of the book I found a bit grating - but that had more to do with the tone, than the content. I actually found some tasty little nuggets between the covers, one of which really hit home, with regard to an orchestra member whom Mr. Zander (conductor of the Boston Philharmonic Orchestra) considered unmotivated and disaffected. Turns out, she was anything but -- she was actually deeply invested in the music they were playing; it was the score/arrangement that was the problem for her. When he switched up the pacing, she was able to pour her whole self into it.

From the book on page 39:
"The lesson I learned is that the player who looks least engaged may be the most committed member of the group. A cynic, after all, is a passionate person who does not want to be disappointed again."

Interesting... when I thought about that in terms of all the IT folks I've worked with in the past, as well as all the really good IT folks who have been inexplicably laid off, over the past few years, by organizations that desperately needed them, suddenly something clicked. Could the unfathomable shedding of some of the most talented and committed team members have anything to do with this phenomenon -- the cynicism of the disillusioned passions?

Let's break it down:

Top performers with a passion for what they do are asked to perform feats of unbelievable efficiency and productivity on a shoestring budget and about half the time they need to get it done right.

They do the job, and they do it well, but they keep being asked to do more and more with less and less.

They have to make trade-offs in their choices, and they have to sacrifice excellence for efficiency. You can have only one of the following three: high quality, quick turnaround, or decent price, not all three, and time and again they've had to sacrifice high quality for speed and price. That soul-sucking exercise ultimately cuts into their morale and passion -- the more deeply they care about their work and the quality thereof, the more quickly they grow cynical and disaffected.

Management notices that, over time, they've become increasingly marginal. They don't contribute the way they used to. They don't perform with the same vigor they once did. Their work is solid, but other than turning in work, they've long since stopped adding their hearts and souls to the life of the organization.

So, they end up on the shortlist for cuts.

And when they are cut, the organization loses some of its most passionately committed performers, who -- given proper support and actual leadership -- could bring home one slam-dunk after another, app-wise. That's bad news for the organization, because the folks who were once the most dedicated, loyal, passionate, committed individuals in the shop are no longer around to help do the job. The fire that burned brightly enough in them to carry them and their teams through the tough times, has been ushered out of the building, leaving the survivors to try to kindle the same drive, the same... vision... that once got the job done.

Problem is, there aren't nearly enough of the best people left. And there's twice the workload from before... and more threats of layoffs.

A new cycle of encroaching cynicism ensues, as the survivors -- who cannot for the life of them understand why some of the best and the brightest were disposed of -- struggle to meet their goals... making the same sorts of sacrifices that drove their colleagues away... slowly sinking into the quagmire of their own broken-hearted cynicism, until they too end up on layoff shortlists.

I'm sure this phenomenon been amply detailed in management literature, perhaps ad nauseum. I'm sure someone somewhere has highlighted this to the H.R. folks and managers of the world. But for me, that instant when I read the Ben Zander quote, a little bit more about my world became a little bit clearer.

Which made me happy... immediately prior to making me very, very sad.

03 December 2009

Catching up after catching up

Well, I overdid it at Thanksgiving. But not in a bad way. We had a really nice time and we reconnected with friends and family we haven't seen in months... or a year. The drive back home took an hour longer than usual, due to the heavy traffic, but it was because we took a more remote route that steered us away from the backups and endless red ribbon of tail lights, and led us through the northern Mass countryside. It was dark, of course, but traffic was flowing. And it was a good thing.

But I can definitely tell I'm not the spring chicken I once was. We "landed" on Sunday night, and I've been going full-tilt boogie ever since... till last night, when I started to come down with something (and me with that 10:00 p.m. conference call I had to be on... global commerce waits for no one). I had been feeling steadily worse, over the past few days, and I had a sneaking suspicion my constitution was going to rebel today. Sure enough, first thing in the morning, it said, "A 9:15 meeting in Boston?!"

I'm not joking. And don't call me Shirley.

Anyway, the upside of being down, is that today I can catch up on my notes -- transfer the wild scrawlings in my notebooks into meaningful collections of cogent thought. It's very artistic and all, to have all sorts of partial words and phrases scattered about, but dude, I've gotta get some WORK done. So, I'll use my time today to catch up with housekeeping stuff that must be done, but often gets pushed aside, once I land in my cubicle and the action starts to pick up.

I generally do pretty well about planning my days. I'm quite fanatical about it, actually... and I probably save myself a good 1-1/2 to 2 hours of churn each day, just by thinking everything through up front, before I launch into my day, preparing-preparing-preparing, and getting clear on my priorities and the steps I need to take. Without my planning, well, all bets are off. The price of velocity is mindful care.

So, there we have it.

Anyway, enough of this break. I've got an 11:00 call I've got to get on, in a few minutes. In some ways, this is turning out to be a very productive day.

Maybe this is what the Taoists mean when they talk about "doing without doing"