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Facing Cancer (or Whacked Upside the Head by Mainstream Medicine) Part II

For Dia de los Muertos, I extended the “crack” in my forehead and tried to show something hopeful coming from it.

Last time I told you about the existential crisis I had over a small skin cancer that led to a larger surgery than I was expecting and the threat of more slicing and dicing to come. What I thought would be, as my primary care doctor had suggested, a “cure” was no such thing. A real cure would have to involve much more than simply cutting out an individual piece of tissue.

The first order of business was to clean out the inside of my head. I needed to get past the pernicious suggestion that the surgeon had implanted, and believe with as much certainty as possible that I did not have to have any more cancer anywhere. I’ve made good progress on that, I think, but it may be a while before I completely stop hearing his words. As I write, it’s been about three and a half weeks, not really very long to heal either physically or psychologically.

The wound itself is improving steadily. The paresthesia from the damaged nerves has already diminished quite a bit.  The worst part now is the lumpy “dart” at each end of the incision. One is at the hairline so less obvious, but the other is very prominent on my forehead. It will most likely look better later on when I can massage the scar and soften it, as I was told to do by the surgeon’s assistant. The repair job does seem to have been well done in technical terms. At the moment I still feel disfigured, though.

I honestly didn’t realize that I cared that much about my face. I’ve never been particularly beautiful and I never relied on my looks to get me anything, so I wouldn’t have expected to react so strongly, but a facial wound feels like a scar on one’s very identity.

It’s interesting; I almost feel more willing to lose my entire body than to have individual parts chopped away. When I was threatened with a hysterectomy many years ago because of nascent cervical cancer, I fought that idea and insisted on keeping as much of my original equipment as I could, while being told I was crazy by the PCP I had at the time. And miraculously enough, even after two conizations (yet another example of not getting it all the first time) and stitches tearing out and needing an extra repair, my cervix eventually filled itself back in. All that’s left of the damage is a very thin, clean scar with healthy tissue around it. That is what the female body can do. I am holding on to the idea that every body has far more ability to regenerate than we give it credit for.

I was only in my first year of acupuncture school when that intimate surgery was done, and my understanding was more limited than it is now. Although the tissue that was removed was not yet invasive cancer and might never have become so, it was already making me ill. I had unusual, severe, long-lasting infections that year; it seemed that my immune system just couldn’t keep up with holding cancer at bay and fighting microbes as well. I knew something wasn’t right. When the carcinoma in situ was found, I just wanted it to be taken out as soon as possible and give my body a chance to catch up. I remember feeling icky about having that diseased mass inside me, unclean, which was probably not very helpful to the healing process in itself. That part I was willing to lose.

After the second conization, I landed in the ER with heavy bleeding, and lost over a liter of blood by the time the repair was done. I was the pale tongue model in my class for many months after that! The blood loss, combined with the stress and fatigue of school, led to some long-term problems that have not entirely resolved. If I could have known all that would happen, I would probably have tried to avoid the surgery. There might have been another way to reverse the condition. However, at that point it seemed that my body was unable to manage the job on its own. And indeed, I did stop getting sick.

As you most likely realize, cancer starts somewhere in your body over and over throughout your life, triggered by a host of possible factors, but your immune system destroys the errant cells before they can cause trouble. It stands to reason that anything that can increase the efficiency of the immune system is good for preventing cancer, while anything that decreases it— including emotional and psychological issues— can help cancerous cells get a foothold. Not that making use of the immune system is necessarily simple to accomplish. Mainstream medicine is doing a lot with immunotherapy for established cancers, but as people go along years after their treatment, autoimmune conditions like diabetes are showing up, because the immune system went over and above what was necessary to get rid of the cancer. So far we can’t control this treatment very precisely. However, I expect that eventually immunotherapy, using the body’s own methods but amping them up, is going to be the main way we deal with cancer. And that’s what I would consider a real cure, rather than just cutting out the lesion we can see without doing anything about the underlying process.

Let’s think for a minute about what that underlying process is. Most cells undergo apoptosis— after a predetermined number of divisions, they die and make room for new cells. You might think of immortality as a good thing, but cancer is immortality run amok. Cancer cells don’t die when they’re supposed to, but keep reproducing and invading healthy tissue, using up resources without performing necessary functions, and causing obstruction and pressure on other structures. So we need to either kill them or somehow cause them to revert to healthy cells that die as they’re supposed to after a full, productive life.

The thing that we often forget, with our violent rhetoric of “fighting” cancer, is that cancer is no more nor less than our own cells. It is not some horrific, alien invading force. It’s our own cells that for some reason are operating under incorrect instructions. Really, that’s all. All that suffering caused by parts of us.

Which brings me back to cleaning out the inside of one’s head. Ultimately, every disease is psychosomatic, because we are constructing the reality of our bodies from moment to moment. It’s crucial to examine whatever is going on psychologically and emotionally and deal with it as best we can. There is no substitute for that. However, sometimes a cigar is just a cigar, a toxic exposure is just a toxic exposure, and solar radiation is just solar radiation. So many issues can be involved in cancer, and there is no sense indulging in victim-blaming, including blaming ourselves. Our bodies are subjected to the various insults and influences of the physical world, and sometimes, it seems to me, stuff just happens for reasons we can’t understand, and it may not be worth analyzing it to the nth degree, to the point where we start doing ourselves more harm by obsessing. We can go forward and figure out what to do next instead.

I haven’t heard anything from dermatologists about preventing skin cancer other than staying out of the sun and/or using sunscreen. The guy who took out my stitches went as far as to say something like, “Even if you’re only exposed for a short time, like getting into your car, the damage builds up with every drop of sun.”

OK. Let’s just stop right there. I don’t see where paranoia is going to help any aspect of our health. Believing we are being harmed every time light hits the surface of our bodies is incredibly counterproductive. We also have evidence that when everyone started religiously dousing themselves with sunscreen, the rate of colon cancer went up, likely because of depletion of vitamin D. We need sunlight. We just need to be careful with it.

It’s well established that low blood levels of vitamin D are associated with a range of health problems, including a greater risk of cancer and a worse outlook for more severe disease and for recurrence. What is not so clear is whether supplementing vitamin D in established cases of cancer will help cure them. I advise my patients to keep their vitamin D level up, since as far as we know that’s best, and I take it in supplement form myself. Even in sunny New Mexico, blood tests show that a lot of us are seriously deficient, and of course that’s more likely in the winter.

For years I have been referring patients to this website from the UK:
https://www.canceractive.com/
The originator, Chris Woollams, collects every piece of information he can find about cancer treatment and prevention. I don’t always find every bit credible or useful, but overall this is the most comprehensive source of cancer knowledge I’ve seen. It’s also a source of hope. A major recommendation given at this site is the “Rainbow Diet,” the concept of basing one’s diet on colorful vegetables and fruits. Although there are conflicting recommendations about diet for treating and preventing cancer (as for everything else), there is broad agreement about eating whole, unprocessed or minimally processed foods, including lots of vegetables. You can’t go too far wrong that way.

At our house we’ve been breakfasting on green smoothies to get our intake of phytonutrients up, and they are yum. I bet my husband, not a big vegetable fan, would never have expected that he’d enjoy snarfing down blenderized kale and spinach, even with fruit added, but he’s loving it. I’ve noticed a small improvement in my vision, which I think is remarkable after just a week or two of extra carotenoids and such.

There are so many substances that have shown activity against a particular cancer or against cancer in general, and many of them are found in those colorful plant foods. Others are herbs or components of animal-based foods. Each one could be a post or series in itself. Here is a partial list of substances that as far as I know are well-researched:
turmeric
medicinal mushrooms (reishi etc.)
DIM, indole-3 carbinol, and sulphoraphanes, all found in cruciferous vegetables
green tea catechins
fish oil
modified citrus pectin
vitamin C (including topically as a sunscreen ingredient)
vitamin A
astaxanthin (from algae, the pigment that makes flamingoes pink)

A simple and surprisingly effective measure is to take aspirin daily. Even a low dose has been shown to reduce the risk of getting cancer in the first place and of having tumors spread if they have already occurred.

Melatonin seems to have a number of useful effects for cancer patients, including reducing damage from chemotherapy and radiation and helping tamoxifen to work better for breast cancer survivors. It has been shown to lower excess levels of estrogen and IGF-1. Here is a worthwhile discussion of it:
https://www.canceractive.com/cancer-active-page-link.aspx?n=1242


Cannabis is often touted as a cancer cure, but from what I’ve read, the situation is muddled and complex. For some types of cancer, it seems to help, but for others it may make things worse. More research is needed, and if the US government would stop making it so hard to do research with marijuana, we’d likely get it faster! I am using a CBD salve around my incision at the moment because it seems that it may help, and at any rate keeping the scar tissue moist and softened is a good thing.
http://scienceblog.cancerresearchuk.org/2012/07/25/cannabis-cannabinoids-and-cancer-the-evidence-so-far/#.Wfe1EK293b0.facebook

Dairy is another controversial subject. Some authorities state that it encourages the growth of cancer and forbid it. Yet, in the form of cottage cheese, milk protein is a major part of the Budwig diet for cancer patients, which apparently has been of help to some. If I had to give advice on this issue, I would say to use only organic dairy with no hormones given to the cows, grass-fed if possible, and as with any food to pay attention to how you feel when you eat it. Don’t eat anything that you don’t tolerate well. I don’t have any clearer information than that at this moment.

While I was in my first week or so of recovery, the film Cancer Can Be Killed showed up online. It tells the story of the filmmaker’s wife, who had bladder cancer and was given no hope except to have her bladder entirely removed. A relative of hers had gone to Germany and been treated with hyperthermia, and had recovered completely, so she did the same, with an excellent outcome. Hyperthermia is not available in the US except in combination with chemo and radiation, they said. It seems like it ought to be.

The hyperthermia was combined with nutrition and other naturopathic treatment. I don’t think we can argue with the concept of helping the body to be as healthy as possible while trying to get rid of the cancer, no matter how we go about the cancer treatment itself. Mainstream oncology hasn’t tended to do that, to say the least. There were a number of statements made in the film that made my BS meter go off, though. One issue was the insistence that eating sugar feeds cancer. I’d heard that many times, and hadn’t really questioned it, but it’s become clear to me that it’s misleading.

Cancer cells do take up more glucose than others, because they are dividing rapidly, and that fact can be used in PET scanning. However, it does not follow that sugar in the diet increases the growth of cancer. In fact, check this out:
https://www.genengnews.com/gen-news-highlights/cancer-cells-are-what-they-eat-and-it-s-not-glucose/81252451

This does not mean that a cancer patient or anyone else should be eating a lot of concentrated sugar. Insulin resistance and diabetes contribute to cancer as well as other health problems, and excess weight is associated with cancer too. Sensibly reducing or eliminating processed sugar from your diet is healthy. Living in fear that eating a molecule of sugar is going to make your cancer grow, though, not so much. Here’s a good overview:
https://www.oncologynutrition.org/erfc/healthy-nutrition-now/sugar-and-cancer/

I don’t want to do anything, or avoid anything, out of fear. That cannot possibly be the way to health. This afternoon I spent a few minutes standing in the yard with the sun on my face. It felt sooo good— just comfortably warm at this time of year, not overwhelming. I let it sink in and told myself that the sun’s energy was healing my body and soul.

On the website of the clinic that treats with the Budwig diet, I saw a lot of questionable ideas and products, but I also saw this, which seems like the perfect thought to leave you with: “As I emphasize to my patients that come to the Budwig Cancer Center, forgiveness and ‘counting your blessings’ are two of the most important emotional states you need to stay strong. Forgive absolutely everyone that has disappointed you at some time in your life because holding a grudge is too heavy for you to carry and especially at this moment in your life.”

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Facing Cancer (or Whacked Upside the Head by Mainstream Medicine) Part I

I’m going to whine for a little while, and then, I promise, I will have some solid, useful information for you.

I thought I knew better.

I thought I was an educated patient who would make sure to get every available piece of information before I let anything be done to my body. I thought that since the effects of the surgery for my cervical carcinoma in situ had been worse than the disease in some ways, I’d never again go for surgery without learning about every conceivable alternative. So much for that.

I also thought that I was well aware of what typical skin cancers look like and what the warning signs are. Nope. Some don’t fit that set of rules.

So I feel pretty stupid at this point.

I did know that skin cancer is extremely common and that we have particular risks in New Mexico because of our clear sky and high-altitude strong sun. I didn’t worry all that much about it for myself because of my vampire-like lifestyle— I don’t enjoy being in direct sun and largely avoid it, in the same way that my mother did. I did know, too, that moles and skin tags and bumps show up more with age. The smooth, pink bump on my forehead, with its even color and its round shape with no irregularities, didn’t set off my radar. It was new in the past year or so, but it didn’t seem all that different from some other objects on my skin. Now I know that the shiny pink appearance is not unusual for basal cell carcinomas.

I did know that something was wrong. Near the mole there was a tiny triangular spot, barely visible but easy to feel, that would crust and slough off over and over and never heal. It wasn’t getting bigger, at least not by more than a few microns, but it didn’t seem right at all. Last spring I asked my gynecologist to look at it, and he suppressed a laugh as he told me confidently that it was nothing. (He is never one to belittle patients’ concerns, so he very definitely thought it was inconsequential.)

The tiny triangle kept doing the same thing, and it seemed to me that the pink mole changed color ever so slightly. They were both right in front of me every time I washed my face or brushed my teeth, so I never stopped noticing them. Eventually I made an appointment with my primary care doctor. When I got there, I told him, apologetically, “This will probably be the tiniest problem you see today.” He judged the triangle to be an actinic keratosis, a possibly precancerous lesion thought to be caused by sun, and said it would be worthwhile to freeze it off. The mole struck him just as it had me— it didn’t seem obviously malignant, but it didn’t look quite OK either. He had me make an appointment to remove it and send it to be checked out.

A couple of weeks later, we did that. I was left with a 1/4” scooped-out divot in my forehead. When a letter showed up the next week, I was delighted to see it, because they don’t give bad news by letter. I opened the letter to find that the lesion was a basal cell carcinoma and that the biopsy hadn’t gotten all of it. My PCP had figured that since we’d already discussed this as a possibility, I wouldn’t be too upset by getting the message in the mail. His assumption was incorrect.

Now, as I said, this condition is extremely common. People go through it every day and don’t make a big deal of it. I had the least problematic form of skin cancer, and only one lesion, not terribly large. As my PCP told me, it’s considered very curable. I was instructed to get scheduled for the state of the art treatment, Mohs surgery. Patients of mine had had it, and it hadn’t looked all that bad. Yet I was completely flipped out. I’d already been at the limits of what I could deal with before the diagnosis— the death of my mother, other devastating hits on the personal and professional levels, our democracy moribund if not already dead, the threat of nuclear war, and in the background the certainty of further destruction from extreme weather. This pushed me over the edge.

Part of that was because of what our cat, Rico, went through at the end of his life: He started with what looked like a tiny scratch on his nose, and it turned into a cancer that literally ate away a great deal of his face. I also had a past-life connection to cancer that was near the surface of my mind.

My PCP attempted to reassure me by email. I read whatever I could find about Mohs surgery, including some pretty technical stuff. Enough that I thought I understood what was going on and got much less anxious about it. Unfortunately, my earlier apprehension turned out to be well founded.

The practice where the surgery was done has about the best information about what to expect with Mohs that I’ve seen, on their website— but I didn’t know about it till after the procedure. No one at their office told me anything before the day it happened, nor suggested anything for me to read. I asked the pleasant young woman who assisted the surgeon to explain what would be done, when it became clear that no one was going to explain anything on their own. She only told me what I already knew, but I insisted that she go through it anyway. It’s astonishing that it wasn’t all made totally explicit, in writing, when I was asked to give consent.

As it turned out, even after all that, I had very little understanding of what was going to be done, no clue about how extensive it would be, and really not much basis to give informed consent. In fact, I don’t feel that I ever had a chance to give truly informed consent.

My husband had had a much larger cancerous lump removed from his arm some weeks earlier. It was a simple excision (that’s what they call it, “simple”), and as with me, they didn’t get all of it on the first try. He had to go back and get a bit more of a crater scooped out. The wound was about a centimeter across and fairly deep, but he had no significant pain, and it healed fairly uneventfully. I was expecting something along those lines. Since Mohs surgery is supposed to take as little tissue out as possible, and I had already had what seemed like most of the problem removed, I was not at all prepared for a dime-sized disc to be cut out, ending up with a 1 1/4” incision, with 9 stitches (not including the ones on the inside) having lumpy darts folded into my skin in order to bring the edges together, and having a chunk of my hair shaved right in front. I’d seen patients of mine who had had Mohs, and seriously, their incisions were not all as big as this.

Yes, I’m whining. Yes, I understand that until the surgeon gets in there, it’s impossible to know how much cancer is underneath the surface. Yes, I know I was lucky that he only had to take one layer off in order to get all of it. It could have been worse. But would it be so hard to TELL the patient that all this is going to happen?

I expressed some surprise and dismay at the time, and the surgeon totally minimized my concern. I had already noticed what I thought was an odd sense of humor, and he applied it again. He said that what I’d had was the smallest surgery they ever do, and that they don’t consider it big until it’s the size of a dinner plate. That is literally what he said. Then he told me that I was almost certain to get more lesions and need more surgeries.

But it got even better. Poking his finger at my nose and cheeks, touching one spot after another, he said, “You’ll get one here, and here, and here. And they’ll be bigger and more cosmetically significant.” It was as if he had put a curse on my skin, or injected poison directly into it. I was in such a vulnerable state that his words sank deeply and immediately into my system, without any filtering. I put up a feeble argument, but he repeated that a recurrence was nearly inevitable. The only excuse I can come up with for his incredibly inappropriate “curse” is that he was trying to scare me into making an appointment with a dermatologist ASAP. (Which I did.) Whatever he was thinking, his words and his attitude were the opposite of anything related to healing.

When I pointed out that seeing a dermatologist and being vigilant otherwise meant that any cancers that might start would be caught early and be small, the assistant replied, in a kind tone as if speaking to a small child, that there’s always more beneath the surface. They didn’t give me the slightest hope that there might be something I could do for prevention, just left me looking at a future of having my face sliced to pieces, with absolutely nothing I could do about it.

I wrote a strongly-worded letter to the surgeon, speaking as an experienced clinician as well as a patient, and delivered it the day I got the stitches out. Which was not done by the surgeon himself, by the way. He never even took a peek at me to see how his work was turning out. That apparently wouldn’t suit the flow of the assembly line in their practice. A different assistant did the work, and he actually supplied me with more information and advice than anyone else had. Then he turned me loose— nothing in writing about what had been done or what to do next, and no followup appointment.

Again, nothing at all was said about how to increase my chances of keeping my skin healthy. I started researching right away to see if there might be something I hadn’t seen before. The statistics I saw were dismaying— not only was the chance of a recurrence in my skin (and my husband’s) quite high, it had been found that people who had had skin cancer were at much greater risk for internal cancers as well. This was already my second brush with cancer, so that shook me up. On top of that, one of the healers who does energy work for me said that he was seeing cancers getting started in at least two other areas. By this time I was pushed well over the edge and hanging on to a very thin twig.  I felt like a ticking time bomb.

But I already knew that cancer is a systemic disease, and was prepared to treat it that way.

Next: Responding to the challenge, and what you can do if you find yourself in this sort of situation

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Being Dead Is Easy. Getting Dead Is Hard.

mystical-door-shutterstock_184672772-webonlyBeing dead is easy. Getting dead is hard.” — Gerrie Glover

Gerrie is a wise and formidable lady, and truer words were never spoken. I thought of this maxim of hers over and over while my mother, Molly, was going through the process that ended in her death on January 22, 2017.

All this time I’ve been writing about the “dead” and the spirit world from a position of being in touch with that reality, but for the most part I was not down in the trenches with death itself and its gritty and messy biological details. It all became immediate and concrete when my mother had a stroke on January 12. I’m going to write about what I observed in hopes that it is useful to someone.

First, on December 30, 2016, our 20-year-old cat passed. She had done astonishingly well for a long time with her failing kidneys, but her body reached the end of what it could handle. Sheena had been velcroed to my mother constantly for a few years, and her death was a hard thing for my mother to get through. We nursed the old lady through to the last, very hands-on because she would not allow herself to be left alone and cried if we weren’t right with her every moment. We were left with her tiny body between us on the sofa, like a perfect sculpture of a cat down to every hair but somehow no longer a cat. My mother wondered what we should do with the body overnight, since it was late and we weren’t going to bury her till morning. “Well,” I said, “no matter where we put her body, she will probably be in your lap.” And at that moment I felt Sheena crawling into my own lap, a small warm weight that stayed till it was necessary for me to get up.

For a few days it was as if we still had two cats, only one was invisible. After that, it seemed that we only had one cat.

Shepherding Sheena through her journey, being the person who listened to see if her heart had stopped, arranging her little limbs for burial, gave me a kind of dry run or rehearsal to help me deal with what would happen with my mother. In Sheena’s case, there were no wrenching medical decisions to make, no questions about whether she might get better. We had known the end was coming and that there was no treatment possible. Things are more complicated with humans and hospitals.

On January 12 my mother suffered a major stroke, affecting areas on both sides of her brain. I think the emergency room doctor had the right instinct. She told us very gently, based on what she saw, that it was time to think about making end-of-life decisions. But within a few hours my mother was able to move her left side again, and within a couple of days she was speaking somewhat intelligibly and swallowing a bit. It looked like she might recover enough to at least sit up in a chair, communicate and feed herself. We exhorted her to rest so that her brain could heal as much as possible, but for a while she was using a lot of energy to make it clear that she wanted to get the hell out of the hospital and get rid of the IV and the other medical annoyances. Which was certainly understandable.

Two and a half days after the stroke, late on January 14, she was able to explain to my daughter that she was ready to go and had nothing else she needed to do. She had great difficulty speaking but was able to get a whole paragraph out and be completely clear. “I’m ready for the sky,” she said, and Lenore confirmed with her that this was really what she meant to say. We’d pretty much known that she felt that way, as she had been weak and had felt rotten most days for a long time, due to problems with her heart, but it was a great gift to hear it in so many words and be sure of it.

The hours and days had a way of running together, and I’m having trouble remembering exactly when various events occurred. It was probably the 16th when she suddenly pointed straight ahead, no trembling in her arm, and clearly called out, “Ann!” That’s her eldest sister, with whom she had had some previous dreamlike contacts. “Is she here?” I asked. My mother nodded. Since the other contacts had been extremely helpful and positive, I was glad to hear it. I couldn’t detect my aunt myself, but I knew that communication with deceased relatives was common near the end of life, and I took this very seriously. My husband and daughter were familiar with this phenomenon as well, and I think that was when we all knew she was turning the corner toward death.

I will spare you the details of the indignities and unpleasantnesses that my mother had to suffer over the next few days. We were told that most people in this kind of situation “just slip away,” but unfortunately she had to take a harder road. We had assumed that the severe agitation she was displaying so much of the time was an effect of the stroke and would likely improve, but if anything it got worse. By the time the palliative care team came to see her on the 17th, she had been through at least a day of hardly any rest or respite and the nurses and I were getting frantic trying to help her. As soon as the palliative care doctor saw her, he recognized what was going on as “terminal delirium.” I had never heard that term before, but apparently it happens a substantial percentage of the time.

The doctor said that we should stop bothering her right away, pull the IV, the heart monitor, and the other devices that could not possibly do her any good. Thankfully, we were moved to a private room where there was relative quiet. We still had a terrible night because the low doses of medications being given weren’t enough to stop the seizure-like agitation. I couldn’t imagine any of us going on like that. The palliative care people agreed and very quickly and efficiently put through an order to move to the inpatient hospice. Their nurse held me and let me weep all over her.

The Kaseman Presbyterian inpatient hospice was a revelation. Instead of a cramped, chaotic hospital room, we found ourselves in a space big enough to walk around easily, with home-like seating and nearly perfect calm, and an atmosphere that felt like it was filled wall to wall with angels and helpful beings. Soon after my mother was brought in and my daughter and husband and I gathered around her, a priest came in to give her the blessing for the sick. The moment Fr. Charles opened his mouth to pray, it was as if the ceiling opened and a thousand more angels dropped into the room. My mother had been stressed further by the ambulance trip there, and this uplifting interlude was soothing to her as well as to the rest of us. I had only once before had an experience like this with being prayed over. Not everyone has that kind of connection to the heavens, it seems.

We more or less lived at the hospice during the next few days. They had a miraculously comfortable place for a family member to sleep, such a contrast with the hospital, and I took advantage of that. The first night, Wednesday, I felt that I was embraced hour after hour by myriad beings of light, wrapped securely in grace and benediction. In that state it was easy to make a strong heart connection with my mother and feel her embrace as well. I was up often to respond to the nurses and check on things, but when I slept it was a wondrous and restorative sleep, and I dozed off and on far into the day, with the staff encouraging me to rest.

Despite that, Thursday night I felt ill and crashed at home. I intended to go back to the hospice in the middle of the night, but never made it. We all continued to limp along through the process, my mother still sedated most of the time and moving slowly toward the end, not really responsive anymore.

Friday morning there was some drama. Her body became extremely hot, not just to the touch physically, but radiating incredible energy all around. The nurse could also feel the heat and energy— I think anyone would have noticed it— and she and I assumed my mother must have had a raging infection by that time, but since they don’t take temperatures in hospice, we didn’t determine whether she had an actual fever. It was far more than that, though. I had never seen so much energetic activity around a person, and I’ve seen a lot. I wasn’t sure what to make of it, and wondered if it had anything to do with the nonphysical part of her moving away from the physical substrate. I haven’t found any information or opinions about this, but much later I did see a reference to a dying person’s skin becoming very hot at about the same stage.

I will describe my subjective perceptions of the next stages of the process. Friday night, as I was keeping watch from the sofa bed across the room, I saw what looked like a sudden opening in my mother’s chest, like a door or hatch being opened. Something that seemed whitish poured out. (This was a “mind’s-eye” vision— I was not looking directly at her.) This energy appeared to congeal into a mass near her body, with a sort of band still connected rather tenuously. It looked like a vague ribbon or stream to me, not the famous “silver cord,” though it must have been functioning in the same way as that.

Drifting through the hours in the middle-of-the night state of grace (not dreaming, mind you), I lost track of where that main concentration of energy was. Where is my mother? I kept asking myself. She didn’t seem to be close to her body anymore. Fryderyk was accessible, and I asked him what he could see and if there was anything he could explain to me about what was going on. I said something about wanting to be sure to be present when my mother actually passed and not wanting to miss the moment.

“If you wait to see it, you will already have missed it,” he told me in his usual aphoristic and slightly cryptic way. In images, he conveyed the idea that death is not a moment but a series of steps or distinct events.* I was already witnessing it, he said. And as usual, I realized that he was telling me something that should have been obvious to me already.

The next morning, Saturday, I found a distinct change. Her skin was still physically quite hot, but there was almost no feeling of energy near it at all. My mother’s body was still functioning, more or less the same as the night before, but she was somehow much less alive. She had already been mostly unresponsive, but now she seemed not to be “in there” in the same way anymore. I took this as a positive sign. It seemed much better for her not to have to experience too much of her body’s travails.

My understanding was that beneath the painkillers and sedatives, the body was still feeling some distress. I could detect a strong sense of disturbance in her heart, that is, the physical organ, and I felt pain in my palm when I held my hand near that part of her chest. I mentioned to the nurses that I was feeling pain in her chest, and no one seemed to think anything was strange about my statement. Hospice personnel hear and see all manner of things.

We began to feel like midwives, encouraging my mother to make the leap into the next birth. We talked to her and told her it was OK to go, which we figured she knew, but we thought we should say anyway. We started to wonder whether there was some unfinished business we didn’t know about. As I would with a regular patient, I poked around and looked for any emotions or issues that might show up, and worked to clear the minor things I found. (Mostly, she was concerned about leaving the mess of papers and paraphernalia in her bedroom for us to sort out.) We reassured her that we were fine and she didn’t need to worry about us.

I stayed over again Saturday night, afraid to leave, thinking that it would happen anytime. By mid-morning Sunday, I was wanting to get a change of clothes and clean up, and the nurses were gently pushing me to get out of there. (We know that often people wait to pass, not wanting to do it in front of their loved ones.) “Did your mother spend a lot of time alone?” they asked.  (She did.) “Maybe she’d like some alone time now.” So I went home, and Bob went to replace me a little while after. Hardly an hour later, they called for Lenore and me to come back right away.

It was almost comically anticlimactic to rush back to the hospice only to sit there again just as before. But things were beginning to change more noticeably. An elderly friend who hadn’t been able to come sooner arrived with her daughter, and they confirmed, based on their experience, that it wouldn’t be long. Their perspective and wealth of experience were helpful, but a little disturbing and imposing too. When they came to my mother’s bedside, I moved to the foot of the bed so that they had space, and they immediately told me not to stand there. Huh? They explained that in their belief system, the soul exits the body through the feet, and they didn’t want me to block its passage. I was completely nonplussed by this thought— I’d been brought up Catholic too and had never heard such a thing— and taken aback that anyone would try to dictate anything to me at my own mother’s deathbed when she was so near the end. I moved over, though, mumbling something about having seen my mother’s chest open and her soul pour out that way already, which didn’t seem to get through to them.

Every so often the nurses checked on the color of my mother’s extremities and the sound of her breathing. There was nothing to do but wait as the death rattle set in. I sat very close, and the sound was terrible even though I knew it was normal and expected. I was insulated from the distressing events, though. What I mainly experienced was the warm, reassuring sensation of my mother embracing me as if I were a tiny child. It was an incredible gift. I knew that whatever her body was going through, she was fine, and so was I. I wished that my husband and daughter, and the staff too, could feel what I was feeling and know the same peace.

I was the one who probed for a pulse and announced that it was gone. The nurse confirmed the time of death, then left us to say our goodbyes. We weren’t quite sure how to react. I remember blurting out, “I’m so excited for her!” and really meaning it, since so many new possibilities had suddenly opened for my mother. She was vibrantly present in the room, so I kept talking to her. Her mouth was hanging open awkwardly, and I wanted to close it for a more dignified appearance, thinking that she would not appreciate being seen that way. I kept trying to reposition her head to make that possible, and it just didn’t work no matter what I tried. I apologized for my failure, laughing helplessly. The absurdity somehow seemed natural. We found ourselves engaging in some gallows humor, and I wondered how the other families in the facility were dealing with this kind of thing. It was surreal and bizarre as much as it was sad, and at that moment I was feeling relief more than anything.

I wistfully noted that the individual cells of the body, most of which were probably perfectly healthy, were now condemned, along with the billions of commensal organisms that ride along with us and make our human life possible. But that is the way of things.

My mother was around and available a great deal for the next few days, and others besides me experienced and enjoyed her company. I couldn’t really feel grief-stricken, since she wasn’t gone. She didn’t continue to hang around so much of the time, and I expect that she’s been doing more worthwhile things than watching us, but there is contact now and then. I still haven’t found her current will; I’d thought I knew where to look, but her papers were not arranged the way I expected. When I begged her for help in locating it, she pointed me in a definite direction in her bedroom— but what we found there was her will from 1963… this would be a great time for me to be a much better medium than I am… still no current will to be seen, unfortunately.

But that situation can be easily dealt with. I have no major complaints. My mother is dead but not lost, and I’m at peace with her and with the process of her life and death. I’m intensely grateful to have been privileged to observe and perceive so much of what went on. My only discomforts have been a few small lingering questions about the medical decisions we made. I’m comfortable that we did the best we could with the information we had at each moment, though.

I understand far more about death than I did before, but there are myriad questions remaining. For one, I have been wondering, if a person dies suddenly in an accident, by gunshot, etc., do they go through the same stages, only much more quickly? Or is it a very different process? I’m sure there must be some after-death accounts of sudden deaths out there.

Friends and patients have been telling me about their experiences of the deaths of their own parents and others close to them. I would love to hear anything you would care to share, either as a public comment or privately.

————————————————————————————————-
*Michael Tymn posted this on his blog at
http://whitecrowbooks.com/michaeltymn/entry/guarding_against_premature_cremation/:

‘In his 1998 book, Light & Death, Michael Sabom, an Atlanta cardiologist, cites an article by Dr. Linda Emanuel, who comments that life and death are viewed as non-overlapping, dichotomous states, whereas in reality there is no threshold event that defines death. “Several scientific observations support Emanuel’s argument that loss of biologic life, including death of the brain, is a process and does not occur at a single, definite moment,” Sabom writes.’

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Killer Copays

Most of us seem to enjoy complaining about our so-called health care so-called system, but not a lot of clear paths for improvement have been put forth. I have come to think that above all, we have a failure of imagination. We cannot envision another way of doing things, or at least a way out of the present situation, and so we continue to put up with a reality that is increasingly insupportable. We tinker around the edges, but nothing more. As Dr. Dean Ornish put it, “We spend so much time in medicine mopping up the floor around the sink that’s overflowing without ever turning off the faucet.”

Much of what I’m writing today will focus on a small aspect of the system, copays, and will not offer grand visions for the future, but I would like to drop this idea into your head so you can let it grow in the background: We created the present situation. We can create something else. What we have now is not ordained by God or nature. It hasn’t even existed for a very long time, only a few decades.

After you’ve read this post, please look up the 2012 film Escape Fire, which outlines just how completely screwed we are and what we can do about it. You can find it here:  http://www.escapefiremovie.com/  It’s also available through Netflix.

Escape Fire is based on a book by Donald Berwick, MD, the former head of Medicare and Medicaid. He wrote it early in the 2000s, and you’d think that a decade later we would have figured a few of these matters out, but as far as I know we haven’t made a single one of the changes he recommended. The idea of an “escape fire” is that if one is about to be overtaken by a forest fire, one can burn an area on purpose to provide a path to escape. The film recounts the story of a group of firefighters who were in this type of situation. Their leader dropped a match on the ground and burned a circle around their position, using up the fuels that would have fed the fire. He told the others to stay in the circle with him, but they took off, insisting that they could get out safely. Guess who survived. Dr. Berwick’s point is that we have obvious paths to escape right in front of us, but we refuse to take them, or even to see them.

Dr. Berwick pointed out that people within the health care industry do exactly what makes sense to them where they find themselves. It’s just that the system contains such incredibly perverse incentives that they often do things that have ill effects for the country as a whole.

Recently one of my elderly patients canceled her appointment for the next day. The reason was that she had to see her eye doctor, and the copay for that is $45, meaning that she wouldn’t have the money to pay even the extremely reduced price I would have charged her as a low-income senior who doesn’t have insurance that covers my services. This lady lives in a subsidized retirement apartment complex. Some of the people who live there have income of less than $1000 per month, and few have much more than that. A copay of $45 is huge for them, possibly even requiring saving up over a couple of months. These folks have Medicare and often other coverage, but strangely, it’s still quite possible to face daunting copay amounts.

A few weeks ago, an insurance company representative told me that high copays do not prevent access to care. Clearly, they do. Copays and deductibles* are both going through the roof. I wrote to her company, one of the major insurers in our area, one which pays only 2/3 of usual and customary fees for acupuncture, as follows:

“Copays keep increasing in general. I understand that at least in part this is caused by attempts to limit increases in premiums. What is troubling is that in many cases copays are equal to or greater than the amount insurers actually reimburse for a given service. As copays continue to go up, this situation is likely to keep getting worse.

“Within the ____ system, the most extreme case I’ve seen involves City of Albuquerque employees. They have a $55 copay for acupuncture, but ___ only pays $43.73 for acupuncture. [Your representative] said that she thought in this case the member would only be expected to pay the $43.73, but that is not how it works. EOBs show clearly that the full $55 copay is expected. And providers are not allowed to discount copays and can get into trouble for doing so.

“It is more typical these days to see a $40 copay for ____ members, and has been for a couple of years now. That means that much of the time ____ is paying a princely $3.73 for acupuncture, and the patient is paying nearly the entire charge. When you include the fact that ____ limits members to 20 treatments per year, the total paid for the year can be as little as $74.60, less than the price of a single appointment for most medical services.

“In both of these types of cases, the member and the employer (often through the taxes we all pay) are paying for coverage for acupuncture, but they don’t get anything that can really be called coverage, and in the case of the highest copays, they have a kind of negative coverage. It’s an advantage to me as a provider to have the patient pay a larger copay, but it’s still painful to see them treated so unfairly.

“I imagine that when the HR department or whoever set up these copays were in discussions about how their plans would work, the amounts sounded quite reasonable to them. Perhaps someone said, ‘I don’t know, what does acupuncture usually cost?’ and someone replied, ‘Well, my acupuncturist charges $70.’ It might not have occurred to them that $55 would be higher than the reimbursement amount.

“(After all, usual and customary insurance payments for acupuncture alone are in the range of $62-65, not counting any amounts for E & M codes or other services. ____ is unusual in paying only about 2/3 of that— an amount that has not changed for a number of years even as patients pay more and more. This exacerbates the issues with copays.)

“I don’t know about how other types of providers are affected. I do know that chiropractors have some similar issues.

“Copays are charged for us DOMs at the ‘specialist’ rate, but since we are not reimbursed at anything like the amounts cardiologists, etc. get, the copays are a much larger percentage of the price. I understand that PCP visit copays are kept lower because insurers want members to see their PCPs to try to catch problems early, but often the PCP can’t do anything and simply makes a referral anyway, meaning that the PCP visit is a waste. Visits to DOMs, DCs and PTs are relatively discouraged by the higher copays, even though we are saving insurers money by helping patients avoid more expensive interventions such as surgeries— not to mention helping the patients relieve their suffering and improve their overall health, which ultimately reduces costs as well as being worth doing in itself.

“[Your representative] said that members have far wider benefits than just acupuncture, which obviously is true, and a member who has a major health problem may end up with much more value paid in benefits than they pay in premiums in a given year. However, this does not change the fact that members with high copays for acupuncture are being sold a benefit that they don’t truly receive. It’s rather like going into a store to buy a shirt, and being told that although the shirt normally costs $45 and most people pay that or less, you have to pay $55 for it.”

So costs to consumers and the country at large keep going up and up and up. In what aspects of the system are those costs increasing so persistently? Let me tell you, payments to doctors are not the problem. We’ve been seeing flat or even decreasing rates of reimbursement. Medicare and Medicaid in particular squeeze providers, and as shown in a heartrending segment of Escape Fire, often the only way a clinic can stay in business is to pack in more and more patients. Again, providers are doing what appears to make sense from their perspective in their corner of the system. But not only is this compression of appointments terrible for patients, especially those with more complex needs, it can actually raise costs. Primary care doctors who don’t have enough time to figure out what’s going on with a patient are likely to refer that patient to a specialist, costing dramatically more, whereas with more time to think, the PCP might well have solved the problem and come up with a treatment plan without making a referral.* So reducing payments for primary care to absurdly low levels is classically penny-wise and pound-foolish. “There is no more wasteful entity in medicine than a rushed doctor.”
http://www.nytimes.com/2014/07/21/opinion/busy-doctors-wasteful-spending.html?contentCollection=opinion&action=click&module=NextInCollection&region=Footer&pgtype=article&_r=3

I would like to propose a simple rule that copays may not be more than 50% of the amount reimbursed for a given service. Period. I truly believe that there is more than enough wasted money, far more than enough, to make this happen. I would also like to propose that resources be redirected into primary care and especially accessible clinics for the most vulnerable portions of the population, like the ones being seen by the frustrated PCP in Escape Fire. Continuing to cut already-thin payments to practices like that makes no sense.

These of course would only be stopgap measures. Next time, I’ll take up some thoughts about self-care and our responsibilities toward our own health. Meanwhile, I offer you one more pithy post to chew on: 
http://rolwingjames.wordpress.com/2014/04/13/the-intervention-fallacy-part-i-how-it-starts/

*https://elenedom.wordpress.com/2014/02/04/health-care-access-and-why-pcps/

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Health Care Access, and Why PCPs?

Grant's rainbow 2.2.14A friend posted this picture of a rainbow that appeared two days ago in our area, a most welcome sight since we had had no moisture at all for over 40 days.  The rainbow showed up just after her neighbor died after a long illness, giving its benediction to the family.  Last night we had a fair amount of rain and snow, and it feels like we will not dry up and blow away just yet.

I am trying to keep up some hope for our health care system as the conflicts over so-called “Obamacare” continue and costs keep spiraling upward.  There does seem to be some lucid thinking going on in at least scattered spots among those in the medical field and those making policy, and I want to encourage that.  There’s also a lot of the same old thinking that got us where we are today.  Here is my current take on some aspects of the situation, which I sent to the Albuquerque Journal today:

The Journal has published some useful articles lately on problems with access to health care, and I’d like to add my perspective as a provider out in the field.  There are three main issues with access to care for New Mexicans: distance, cost, and scarcity of providers.

I don’t have to tell you that for many of our residents, most everything is far away.  Even in our smaller cities, there are not a lot of services.  In Grants, where I see patients once a week, medical specialists come in from Albuquerque or elsewhere, as I do.  People who need VA services must go to Albuquerque, no matter how elderly or disabled they are.  It’s bad enough in a small city like Grants, but people who live in more rural areas, as some of my patients do, may be completely out of luck if they lack transportation.

Getting more New Mexicans insured is necessary and commendable.  However, this does not remotely solve all the problems with the direct cost of medical care to consumers.  As those who are shopping on the state exchange have no doubt noticed, many plans have deductibles in the thousands of dollars.  Also, with some plans patients pay as much as 90% of the cost of the service themselves, even after their deductible is met, because their copays are so high; they are paying for coverage that they don’t get. The ACA was intended to bring deductibles and copays into the realm of reason, if I understand correctly, but as it is, cost limits access even for those who are insured.

For those on Medicaid, at least, copays are low or nonexistent.  However, very basic and critically necessary care may not be covered.  For example, one of my elderly patients needs drops for an unusual and painful eye condition caused by her recent case of shingles.  The cost is low compared to most of her care, but Medicaid is not covering this medication, and on her extremely limited Social Security income, this lady can’t afford enough of it to last through the month.  For all the millions we spend as a state, we still can’t get people simple things that they need badly.  And while the myriad costs add up to so many millions, Medicaid and Medicare payments to providers are so unsustainably low as to keep providers out of the programs, exacerbating the access problems all the more.

Our state’s lack of health care providers has multiple causes, but it also has the potential for multiple solutions.  Making better use of mid-level practitioners, as many have suggested, is certainly necessary, and any efforts which will attract more health care workers are worth trying.  However, there are other available health care forces which are only partly being tapped.  One of your editorials did refer to “traditional community health workers,” by which I assume you mean people like curanderas/os and Native healers.  Encouraging greater use of their abilities would be a definite help– but how is that going to be funded?  For the most part our insurance system has ignored the existence of these valuable resources, as it has ignored herbalists, homeopaths, and those who do energy healing such as Reiki.  Most federal dollars will also bypass all those practitioners and the people who rely on them.

New Mexico has a formidable and growing health workforce in the members of my profession, Doctors of Oriental Medicine.  We too are being used far less efficiently than we could be, even though most commercial insurance in the state does cover our services.  Decision makers don’t seem to realize how much primary care we do– and we have not yet managed to get the word out to them sufficiently.  We are lumped in with “rehabilitative medicine” by insurers, but that is only one aspect of our medicine.  Patients walk in to acupuncturists’ offices with everything from flu to IBS to sciatica, and we treat them effectively.  We are well placed to help take the strain off of primary care MDs, and we are ready and willing to serve.  However, provider groups organizing “patient-centered medical homes” have generally not included us in their planning.

Medicare does not cover acupuncture, and under most circumstances Medicaid also does not, largely because the federal dollars are not available to make that happen.  Attempts to fix this in the state and federal legislatures have failed thus far.  So immediately a huge proportion of our population is left out of a major form of effective and cost-effective medicine.  And while our NM-based insurers do offer coverage, as I mentioned before, in many cases reimbursement is slim and patients are left to pay as much as 90% of the charges, so that this “coverage” is not very meaningful.  (Fortunately, there are also many plans with much better coverage, I must add.)  Yet, many patients do use us as their front-line care providers, and that could be expanded.

There are still other possible providers as well.  In some situations a chiropractor may be the best choice to see first, and access can be a bit easier than that for DOMs, with so many chiropractors available and a good number of them accepting Medicare.  For at least some conditions these practitioners could also help to ease the burden on primary care MDs.  Physical therapy is usually given limited coverage, and patients tend to be referred to PT only after they have failed to get better for a long period of time.  That is inefficient and leads to unnecessary suffering.  We could use PTs more as the first choice, go-to practitioners for injuries, back pain, and the like.

There is one access problem that would be very easy to solve, IF those who are in charge were willing.  That is the system of HMO and PPO networks.  It was unconscionable when Lovelace ended its relationship with ABQ Health Partners and tore hundreds of thousands of New Mexicans (including my family) away from the doctors they knew and trusted.  Now Presbyterian has stopped coverage to the UNM providers, again leaving patients in the lurch.  We could stop this kind of abuse, I expect, legislatively or perhaps through actions of the state insurance department.  I am not holding my breath, but as the provider crunch gets more and more serious, I hope access will be broadened across insurance networks.  There is no good reason for things to be this way; we all pay and we all deserve to have the best providers for our needs.  HMOs were supposed to reduce costs and improve health outcomes.  Neither has happened.  Time for a different approach.

And we do have a different approach waiting in the wings: the home-grown, NM-specific Health Security Act is still here and has been gathering more and more support over the years, though so far it hasn’t made it past all the Powers That Be.  In the next few years we will have the opportunity to improve upon the current health insurance exchange and enact this more efficient plan.  We can choose to do it– it’s just a matter of willingness.

 

OK, that’s what I sent off to the newspaper a moment ago.  Continuing:

Let’s say that a patient has jumped through all the hoops of distance and cost and gotten the coveted access to care, and is now sitting in the doctor’s office.  Now the main barrier is time.  The patient may have waited months for this appointment, but she is going to be very lucky to get more than 10 minutes of the doctor’s time.  And maybe even that pittance may soon be a luxury.  An editorial written by two local executives with Presbyterian Health care and published a few days ago stated that because of the pressures on PCPs, we have to find some alternative to the standard 15-minute appointment with the physician, such as group appointments for people with common conditions like diabetes.  Wait just a MRSA-contaminated minute here!  We pay more and more and more for our supposed health care every year, we are totally breaking the bank, we are stressing the whole country out trying to fix all this, and we can’t even get a measly 15 minutes with the Minor Deity?  Seriously?  (Meanwhile, the Deity is struggling to stay afloat in a world of shrinking reimbursements and greater pressures on his or her business.)

I must say that on the fairly rare occasions when I’ve gone to an MD, as for my yearly OB-GYN checkup, I’ve had more like a 25-minute appointment.  I hear that this is not usual, but it has been the norm for me thus far, perhaps precisely because I’m not there all the time– I’m having more than just brief followup appointments.  So I have a little bit of hope, but again, as the provider crunch gets worse, that hope is likely to evaporate.

(Appointments with me as the doctor, in contrast, are still normally scheduled for an hour or more.  My patients who have gone to community acupuncture or to other colleagues who see multiple patients in an hour tell me that they appreciate the difference.  I find trying to treat more than one person at a time very stressful, in addition to feeling that I can’t be as effective, and I have no intention of doing that on a regular basis, but the squeeze on insurance reimbursement may force me to change my ways eventually.  I hope not.)

Now let’s think about what actually happens during that 10, 15, or possibly 25 minutes.  What are primary care physicians for, and do they fulfill that purpose?  One of the main things they do is to prescribe and authorize refills of medications.  In the case of chronic illnesses, they should be able to help the patient maintain well and deal with any changes in their condition that come up.  Well, last week one of my patients, who has been taking Synthroid for decades since she had thyroid surgery, went to see her new PCP, who had been forced upon her by the issue I mentioned above, Presbyterian ending its relationship with the UNM system.  Her last PCP had reduced her dosage, and she had done extremely poorly until she figured out the problem– herself– and started taking the higher dose again.  She explained all this to the new guy, but he flat-out refused to consider prescribing the dose she needs.  Total failure both at paying attention to the patient and at delivering the treatment.  Especially at paying attention!  I wish I could say this was unusual, but it’s what I hear from patients over and over and over, and it seems most common with regard to thyroid issues.*  In this case, there was an out– I sent the patient to a colleague of mine who specializes in endocrinology and can prescribe natural thyroid extract.  Not everyone has such an alternative, and many patients go without effective treatment.

The other main thing a PCP is “for” is to be on the lookout for problems and do something about them before they get worse.  Often they really shine in that role.  A few weeks ago we got my mother’s PCP appointment moved up because she was getting markedly weaker and often short of breath.  The PCP (Ann Jones, MD, about whom I have few complaints) didn’t like the way my mom looked either, and sent her for extensive testing at the ER space across the parking lot.  They didn’t find much, but my mom came home– after an exhausting 9 hours– with a clear diagnosis and a prescription that has been noticeably helpful.  That’s more or less how things should work.**

On the other hand, a patient who has recently entered the Medicare age group went for her first ACA-mandated Medicare yearly wellness checkup around the same time.  This lady has had a chronic cough and severe fatigue for months, following a period of extreme stress, and although she’s improving, no clear cause has been found and the problem has been hard to treat.  The idea of these yearly exams for Medicare is supposed to be to give the patient a thorough going-over so that any problems will be found and dealt with appropriately, keeping them from getting worse and causing more cost and suffering.  My patient reported that the appointment lasted less than 10 minutes, she barely had the opportunity to ask any questions, her main complaint was not really addressed, and no treatment was suggested.  And this is a very assertive and articulate patient.  So it didn’t seem like the purpose of the exercise was fulfilled at all.

The PCP is often the most accessible and cost-effective person for performing minor, in-office surgeries.  And of course the PCP can order tests, which will either show that there’s no problem or perhaps guide the path to more specialized care.  When I had that health scare back in August, I ended up with Bob’s PCP, Oswaldo Pereira, MD, who had no more idea what was going on than I did, but could send me for further testing.  We ruled out a number of possibilities, and that was helpful and quite necessary; I needed to know that I didn’t have a cardiac issue, for example.  However, Dr. Pereira never came up with either a diagnosis or a treatment.  Since we couldn’t find anything dire, and since I was gradually getting better, we both dropped the matter.

I had the most significant improvement with a structural approach, under the care of my friend Christine Dombroski, PT.  Dr. Pereira, thoughtful and knowledgeable as he is, would never have thought to send me there, and didn’t really understand why this helped.  It’s just not part of the way MDs are usually trained.

I love the PCPs of the world and feel sympathetic toward them, but the more I consider all this, the more I think our typical use of them is a bit misguided.  I’d like to end with some fairly obvious statements about when to head for your PCP’s office, and how to use that system appropriately.  First, please do not see the PCP when you have a cold!  You will accomplish nothing except to waste time and money, tire yourself out when you need to rest, and spread viruses around the office.  Even a run-of-the mill case of flu is not a good reason to go to the PCP, unless you have an underlying condition that makes it more dangerous; all they can do is give you Tamiflu, which works poorly if at all, and tell you to rest and drink fluids, which you already know.  (Do feel free to see me or my colleagues, as we can actually treat you!)

Do head for urgent care or the ER if you have severe unexplained pain, trouble breathing, or other scary symptoms that are not resolving in a reasonable way at home.  And of course if you are having any signs of a possible heart attack or stroke (I should write another post on those), you should call 911 as soon as you can reach the phone.

 

*It doesn’t have to be that way.  Both my last PCP and my OB-GYN tend to dose thyroid replacement on the basis of symptoms rather than strictly by blood test results.  They are not unique, fortunately, just not the rule. 

**Update, later in the day:  This morning my mother saw Dr. Jones again, and she is leaving most medication issues up to the specialists.  So I ask again, what is the PCP for?  It’s not easy for 89-year-olds to get to appointment after appointment, nor for their families to get them there.

 

As I was writing this, I came across a great Medscape article by a doctor who has a vision of what a true health care system could be like.  You may have to sign up with Medscape to read it, but if you have any interest in medical matters, it’s well worth it.
http://www.medscape.com/viewarticle/819947?nlid=46863_1521&src=wnl_edit_medp_wir&uac=167278MR&spon=17

Here the author imagines an idealized school health teacher:
‘”She sat down with all of the physical-education, biology, and health-education teachers in her system, and together they outlined a plan to change the curriculum such that health education starts in kindergarten. In their system, by the time children reach the 12th grade, they know which side hurts when their appendix is about to rupture. They know the warning signs of a heart attack. They know when to start screening for colon cancer, and they know when it’s appropriate to access the doctor’s office, the urgent-care clinic, or the ER. They understand the basic dangers and positives of over-the-counter medications. In other words, by the time someone puts a high school diploma in their hands, they are as well equipped to take care of their bodies as they are to find their favorite iPhone app.

“They understand the difference between a carbohydrate and a fat and which foods fuel their systems to fight cancer, heart attack, and stroke. They are not going to be obese because they know to exercise at least 150 minutes per week. Mrs J’s students are going to cost us less and live longer. They will live better with more money in their pockets, because they won’t have to buy a laundry list of prescription medications every year until they die prematurely from a preventable illness.’

And here’s her imaginary doctor who figured out a fix for electronic health records:  ‘Then, there’s Dr P [for practical]. Although we acknowledge the necessity of electronic health records [EHR], our earliest efforts have failed the patient. A doctor’s daily work has ground down to a snail’s pace. Patients complain about the basic lack of eye contact during an office visit because the doctor is focused on a screen. Dr P revolted against that practice. He designed a system where there are shorter updates at each visit and there is a symptom-limited entry into each subsequent visit. You don’t have to go through 900 reviews of systems that have nothing to do with why this particular patient has come to see you. He does only a positive review of systems. He took the time away from his EHR and gave it back to his patients, and his patients are more satisfied and better taken care of because of it.’

All this could happen.  There’s no reason why it couldn’t.

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What If Police Service Were Privatized?

Hey, don’t laugh.  Firefighting used to be provided by private companies.  If you had a fire and you hadn’t paid up, it was too bad for you.  If certain forces in Congress and elsewhere had their way, everything in the world might be privatized.

But health care is already being controlled by private, for-profit corporations.  Here, James Fieseher, MD gives us a look at what things would be like if police protection were administered the same way.  He asks, “What if police services were privatized and to receive them we had to be covered through a private police services insurance policy?”

Thanks to Mary Feldblum of the Health Security for New Mexicans Campaign for passing on this almost too-true-to-be-funny script:

“9-1-1”

“Yes, I need help. Someone’s downstairs breaking into my house trying to rob me. Please send somebody right away.”

“Can I have your insurance number, sir?”

“My WHAT?”

“Your police insurance number. If you want us to send a policeman over, we’ll have to have your insurance number.”

“But there’s someone in my house now.”

“I’m sorry sir, but without your insurance number I am unable to authorize a patrolman.”

“Okay, let me see if I can find it. I have the lights out and the robber doesn’t know we’re up here.”

“I can wait a short time sir, but I do have other calls.”

“I think I found it. The number is YGG73552W.”

“I’m sorry, sir, but that was last year’s number. You would have been issued a new card for this year. You should have a new card with the last letter Q.”

“Oh here it is. The number is YGG73511Q.”

“Very good, sir. Let me check your number through our system. Please hold just a moment.”

“Please hurry. I think I hear him moving up the stairs.”

“I see from our records sir that your policy doesn’t cover robberies.”

“WHAT?”

“Your policy doesn’t cover robberies, sir. I’m sorry. I won’t be able to send anyone out right now.”

“Look, I’m being robbed. This is the only police policy my employer signed up for. I didn’t even have an option for robbery coverage.”

“I’m sorry sir. You know, you could have purchased an individual coverage policy outside of your employer’s insurance.”

“I can’t afford that. That policy costs over $600 a month!”

“I’m sorry sir. Is there anything else I can help you with this evening?”

“You mean that’s it? That’s all you can do for me?”

“Yes sir.”

“Look, lady. This guy has just broken into my home, he’s now up the stairs and I think he’s about to attack my wife.”

“Oh, that’s good, sir. Your policy covers assault.”

“It does?”

“Of course, sir. That’s part of our personnel protection policy. I also see that you also paid for family coverage, which means that not only are you covered for assault, but your wife and children are covered as well.”

“Thank God! Now, please, send someone over right away!”

“Yes, sir. Would you like us to send a criminal law student, a rookie policeman or a veteran police officer?”

“What kind of ridiculous question is that? Of course I want a veteran police officer. My wife is being attacked!”

“It’s just a matter of co-pay, sir. The generic criminal law student is a $10 co-pay. The rookie will cost you $25 and the veteran police officer is $75.”

“Why so much?”

“That’s what you pay when you want a brand name — our finest.”

“Forget it. I’ve got a handgun somewhere around here. I’m just going to shoot the bastard myself.”

“I wouldn’t do that if I were you, sir.”

“Why not, he’s assaulting my wife!”

“Yes, but shooting him would be an unauthorized, out-of-network referral not to mention our non-compete agreement you signed. We would have to arrest you for that.”

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Preventive Care, Personal Responsibility, and $$

Originally posted August 18, 2009

Last week the president made some comments about the fact that the American health care system pays for treatments that may be unnecessary, such as certain surgeries, while it fails to pay doctors to educate patients and perhaps avoid these procedures.  Many MDs were upset by these words, which may not have been chosen in the most politic matter.  Their feelings were hurt, and they protested hotly.  However, this point needed to be made, and as a society we need to discuss it.

Mr. Obama mentioned tonsillectomies as a potentially unnecessary surgery, and your article appropriately pointed out that in some areas of the country far more of the kids have them than in other areas.  It’s obvious that medical necessity is not the only factor controlling this.  A doctor’s medical judgment might be influenced heavily not only by economic factors but by what habits and traditions are common in that time and place.  When I went to acupuncture school, I was the only student who still had tonsils, out of a group of 20 adults ranging from their 20s to their 50s.  Tonsillectomies used to be more common, as far as I know, and that was because doctors and parents believed that they were a good idea, not because they were always necessary.  Similarly, when I took cadaver lab, the instructor was overjoyed to find that our cadaver had a uterus.  He almost never saw one that did.  Hysterectomies were done far, far too often, sometimes by doctors who were known to be “knife-happy,” as my mother’s generation put it.

Thankfully, both doctors and patients seem to be a bit more cautious with these surgeries nowadays.  However, it is absolutely true that doctors generally get paid for doing something, not for helping a patient avoid procedures or medications.  We are famously told that in ancient China, doctors were expected to keep people well; the lowest form of physician was the one who treated illnesses, and the highest was the kind who taught people to live in a way that kept them healthy.  If too many people got sick, the local doctor might be in big trouble!  That is the tradition in which I was trained, yet I too am paid for the treatments I provide, not for teaching a patient skills which may allow them to stop needing treatment.

We give a great deal of lip service to preventive medicine, yet we hardly practice it at all.  HMO, you may remember, means “health maintenance organization,” and the HMOs were originally supposed to save us money by emphasizing preventive care.  Well, we know how that turned out.  HMOs do pay for a certain amount of screening, but they also typically disallow care that is considered “maintenance.”  That is, if you have acute back pain, you are covered, but if you’ve gotten better and you want to see your chiropractor or acupuncturist or physical therapist to keep you from becoming disabled again, your insurer isn’t going to be interested in paying.  Programs that have shown success in improving the health of diabetics by providing people they can talk with about diet and other issues of daily management of their condition have often had their funding cut.

Charles Krauthammer, in a column printed last Saturday, argued that preventive medicine is not the “magic bullet” to reduce health care costs.  “The idea that prevention is somehow intrinsically different from treatment– that treatment increases costs and prevention lowers them– is simply nonsense.”  Yes, this is true if you accept Dr. Krauthammer’s definition of prevention.  “Preventing a heart attack with statins or breast cancer with mammograms is costly,” he writes.  Excuse me? Statins, which do not address most of the mechanisms behind heart attacks at all, and which deplete the body’s stores of CoQ10, thereby contributing to heart failure (not to mention the other side effects), are indeed expensive, but they aren’t nearly as useful as their manufacturers would like us to think.  And no one expects mammograms to prevent breast cancer.  Mammograms can only detect cancers that have already occurred.  This is still a good thing, but it is not prevention.  Prevention is more complicated, and requires more responsibility, than just showing up for a test.

Most real preventive care comes from the patient, from us as individuals, and costs little or nothing.  Improving our diets, for example, is perhaps the single most important thing we could do to improve the health of the entire country, and it would reduce the costs associated with obesity, diabetes, cancer, and heart disease.  For example, if Americans were simply to stop guzzling the incredible amounts of high-fructose-corn-syrup-filled sodas that we consume, we’d make big inroads on diabetes and osteoporosis even without making any other changes.  Most of our chronic and degenerative diseases are caused by our own behavior, and only we as individuals can control that.

There is so much more that could be said here about the ways in which we make ourselves sick by pouring toxins into our bodies and our environment.  Then there is all the illness caused by well-meaning but wrong-headed medical treatment, including the thousands of people who die because of prescription drugs each year, and the harm done by incompetence and poor procedures, like hospital-caused infections.  Much of the care we pay through the nose for is to fix problems caused by the carelessness and stupidity of human beings as a group.  Humans are probably not going to get a lot smarter or more sensible anytime soon, but we can certainly tighten up things like infection control.

What’s being proposed to reform health insurance is hard enough, but real reform of the health care system will require changing our habits and our attitudes– a feat which people usually try their best to avoid.  It’s not easy to feel optimistic about that.  Yet, we must.


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