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I assume that no news is good news -- for the folks who hoped it would be repealed.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."

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.

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.

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.