What would it look like if healthcare worked the way I wanted it to?

January 19, 2015

I write a lot about all of the small things that I think are wrong with the system and the many small improvements I’d like to see. Those are all fine on a small scale, but what about the big picture? I decided to mentally design my own fictional healthcare system. For this my 500th (!!) post, I’m laying out just a few ideas for a system that I would 1-19-2015 5-44-01 PMactually want to be a part of. But I want your input to help make this fictional system even better! So please add your own ideas in the comments!

Now, I know that none if this is realistic right now politically, but wouldn’t it be nice if……?

To start, Ms. Rants’ Healthcare System (MRHS) is a system that would put the patient first. The goal would be to maintain health and prevent illness. Let’s say that again, because that’s a big fucking deal, and something that most of us don’t experience right now.

The system would put the patient first.

The goal would be to maintain health and prevent illness.

Oh my, I’m already light-headed with excitement! Ok, so we have our goal in place. Next up, let’s make sure everyone can access it, and I do mean everyone. Sure, someone has to pay for this, but I’m thinking there would either be a sliding scale or it would be paid for through taxes. But every person would have access to MRHS, regardless of income, assets, health, sexual orientation, gender identity, race, religion, citizenship status, etc.

And since we’re talking about access, that means that every office would have the following:

  • Accessible doors, chairs, bathrooms, examining tables, and everything else for all (including those who are able-bodied, in a wheelchair, overweight, blind, etc.)
  • Well-trained staff to understand and assist with the above.
  • Translators. The MRHS would have a staff of translators all over the world, all accessible via online video. When needed, translators would also be available in person whenever possible. All documents would be available in any language needed by the patient.
  • Medical personnel available for home visits for those patients who are unable to leave their homes.
  • Appointments in the morning, afternoon, and evening as well as weekend appointments. For the rare time the office is closed, patients can go to their local hospital for no charge.
  • Reserved appointment times for those who need last minute appointments not only for emergencies, but because they can not schedule in advance. For example, a retail worker may not know their work schedule until a few days in advance, so they need the flexibility to move appointments.

Of course, MRHS would also provide transportation to appointments for those who need it.

Now let’s talk about medical records. These would be electronic and available to every medical professional in every practice. I have spoken to programmer friends who work on these kinds of things so I know it’s not realistic right now, but this is my dream, and I’m choosing to dream about a world where this is possible. Right now, my Beth Israel hospital records can’t be read by my doctor at Brigham & Women’s Hospital unless I print them out and carry them with me. In MRHS, though, every doctor would use the same system. Everyone would be connected. But it wouldn’t only be the doctors who were connected: the patient would also be connected! The patient (or in the case of a child, the patient’s guardian) would approve each doctor who would see their record, and could rescind that permission at any time. The patient would also be able to make notes in their record, pointing out discrepancies between what they said/feel/experienced and what the doctor wrote. Of course, for this to work, every patient would need internet access and a computer, but of course in the MRHS dream that’s the reality, so that each patient can also participate in online support groups and do their own medical research. Training to use the computer would also be provided.

Of course, since each patient is being given the opportunity to be an active participant in their own care, the notes they add to their electronic record will be read and responded to in a timely manner. Patients can email every doctor, nurse, physician’s assistant, and other medical professional. Patients can also enter requests for certain tests and explain their reasoning as well as request changes in medications. Medical professionals will not receive any incentives or disincentives regarding tests or treatments, so all tests will be ordered unless there is a reason not to, and all treatments will be chosen based on their likelihood of success for the patient.

All tests and medications will be covered 100% by MRHS, of course. In addition, any over-the-counter item prescribed by a doctor will also be covered. For example, the multivitamins and vitamin D that my doctors now want me to take would be covered.

And it should go without saying that all accredited medical professionals will be covered. That includes doctors of all specialties, naturopaths, acupuncturists, chiropractors, and every other medical professional. If they’ve successfully completed their training, registered, and haven’t done anything really wrong, they’ll be covered. Simple.

Now, we haven’t touched yet on what it means for a medical professional to complete their training. You see, the MRHS has a different set of criteria for medical professionals than the current systems. Each medical professional will have to go through schooling and then follow up with continuing education, as they do now in many systems, but the content of that training will be different. Yes, they will be taught biology, etc. But first they will be taught to respect patients. They will consider a patient’s experience and intuition. They will learn not to dismiss a patient’s reported symptoms simply because they are unlikely or unusual. They will spend time overnight in hospitals, being treated as if they are ill, being taken care of and woken up for tests, etc. They will experience waiting rooms. They will go to offices and sit in waiting rooms, then report their symptoms to a strange person and see what they say. Nothing can replicate the pain, fear, and uncertainty that many patients face, but it’s a start.

They will focus not only on curing illness, but on maintaining health.

They will be trained to treat all patients equally, eliminating all racism, sexism, homophobia, biphobia, transphobia, anti-semitism, islamophobia…. and all other prejudices. They will be taught how to truly listen to patients. Medical professionals across specialties will team up when necessary. A rheumatologist, neurologist, and naturopath might all consult with one another about a particular patient or about a series of patients who seem to cross their specialties. Medical professionals will never lie to patients, even if they think it is in the patient’s “best interest.” They will offer patients all potential testing and treatment options and will guide but never decide for the patient. They will take their time with each patient and be sure the patient fully understands everything and that all questions are answered.

In short, they will learn to put the patient and the patient’s health first.

In the MRHS system, pharmaceutical companies will have no direct contact with medical professionals. Instead, a web site will be regularly updated. It will list every medication. New medications will be marked as new. It will include study results, including effectiveness and side effects. It will include comments by prescribers. When prescribers have questions about a medication, they will post their question to a message board on the site. Other prescribers will answer. Pharma reps can also answer, but their screen names will show they are pharma reps. There will be no more “conferences” for specific medications paid for by the pharma companies. Instead, medications will only be discussed at medical conferences. Pharma companies won’t attend these conferences. Prescribers will present on medications just like they present on medical equipment and other treatments, studies, observations of patients, etc. They will not be paid for this in cash, meals, or any other compensation.

I know this doesn’t cover everything, but isn’t it a fantastic beginning? I would love to be a patient in this system!

I realize that at some point my perspective changed. I started this article by writing about what “would” happen, and at some point “would” changed to “will.” Normally I would go back and change that so that it’s consistent, but I like it the way it is. Right now MRHS is a dream, but I’d like us all to start thinking about it as a potential reality. If we don’t dream big, it will never happen. I’d rather dream big.

Ok, your turn: what would you change about MRHS? What did I miss? Please add your thoughts in the comments! Let’s see just how great we can make this!

And on a side note, thanks so much for sticking with me. I can’t believe this is my 500th post! How did that happen?


Could a new pain be isolated?

January 14, 2015

Sitting at my computer has become more painful, now that I can’t find a comfortable position for my foot. I didn’t fall or trip or do anything else to it, but one day it started hurting. Usually my pain is in joints or in more “common” areas like my back and neck. The top of my foot was a new one. So I waited for it to away.

But it didn’t go away. I meant to mention it to my new podiatrist when I went to get examined for new orthodics, but I was so excited about the orthodics that I forgot to mention it. When I went to pick up the new orthodics 2 weeks later, I still had the pain, and this time I remembered to mention it. She said that the area I’m pointing is actually related to joint. Immediately, alarm bells went off in my mind. A joint?? Could I really have a new joint acting up?? She explained that there was a ligament there that had probably gotten stretched too far some how. She said it should fix itself within a few weeks, but it had already been a few weeks. The next step would be to immobilize the foot. Um, no thanks! Well ok, I might have. But first she wants to see if the new orthodics help. I sure hope they do!

But in the meantime, I’m left to wonder if this new problem is isolated or if it’s part of my connective tissue issues. It’s possible that it’s isolated, right? Right? I mean, if an otherwise-healthy person can have this problem, then I can too, right? Right?

But it’s also possible, even likely, that it’s an extension of the pain that I already have in my wrists, toes, knees, fingers…. Every few years I get pain in a new set of joints and it doesn’t go away. It can’t be “healed.” I haven’t had any new joints join the list in several years so I’ve been lulled into thinking this might be it. But I should know better. Despite all of my hard work and all of my improvements, I still have the same autoimmune diseases, whatever they are, that caused the problems in the first place. I’ve always assumed that sooner or later all of my joints would succumb to this. I just hoped it would be later rather than sooner. And when I pictured it, I didn’t picture this particular spot of pain that I never knew existed in relation to a joint.

This isn’t the end of the world. Actually, in my world, it’s relatively minor. The pain isn’t actually what’s bothering me at this particular moment. What’s bothering me is that I don’t know how to proceed. If the orthodics don’t help (and with my luck, they probably won’t) then should I bother to immobilize the foot? That wouldn’t be good – I wouldn’t be able to wear my new orthodics, it would throw off my balance, it would probably aggravate my hip, and it would be a real bitch to deal with in the cold, snow, and ice that come with Boston winters. And it probably wouldn’t do a damn bit of good. But then again, if there’s even the tiniest chance that it could help, that I might be preventing future pain, don’t I owe it to my future self to try?

Or would I just be deluding myself by thinking there was a chance this could possibly be an isolated condition?

Sadly, it’s a situation that we with chronic illness have to deal with far too often. Every pain, every extra-tired day, every ear infection or sore throat or sneeze or…. we have to question it all. My foot is simply today’s question.


Dear doctor: Those symptoms you ignored were signs of a real problem

January 7, 2015

I don’t expect every doctor to know everything there is to know about medicine and health. I don’t even expect them to know everything there is to know in their own specialty. But when I present the same symptom to many doctors, and it’s common enough to be written on one of those silly internet lists, shouldn’t at least ONE DOCTOR have known what was going on??? Or at the very least, they shouldn’t have brushed it off!

Back in my mid-20s my fingernails began to curve. Before that they were pretty typical nails, I think. Then suddenly, they curved downwards as they got longer. The first and middle fingers were the worst on each hand. I just cut them recently so I can’t take a photo today, but trust me on this; it was really noticeable.

I didn’t assume there was a major, life altering problem, but it definitely wasn’t normal, so I showed my doctor. He brushed it off, saying it was nothing. I showed my next doctor after him. Same response. I showed many doctors, both internists and specialists. Some said it was nothing. Others weren’t sure, but said I shouldn’t worry. Not a single one suggested that maybe it should be investigated. A friend said it could be a vitamin deficiency of some sort. My doctor didn’t agree. So what could I do about it? Looking things up online wasn’t so easy just a few short years ago, and I had bigger health problems to worry about.

I came across this short list, What Your Hands Can Reveal About Your Health, a few months ago, and I haven’t been able to forget about it. That’s because it was so clear about this problem that none of my doctors addressed:

Curved nails

Soft nails that curve likes spoons can be a sign of iron-deficiency anemia, says Dr.Leffell. The condition, called koilonychias, can be due to such malnutrition, gastrointestinal blood loss, worms, gastrointestinal malignancy, or celiac disease. See your internist who can check your iron levels.

Now, obviously my doctors screwed up in other ways. I had low ferritin levels for many years, but none of my doctors addressed it. It wasn’t until I sent myself to a hematologist that I finally received the iron infusions that got my levels up to where they should be. And I had symptoms of Celiac Disease for many years, but doctors kept telling me it was IBS, or IBS and reflux, or IBS and stress. Nothing improved until I put myself on a gluten-free diet. So really, the finger nails were just one more symptom that was ignored.

But why were they ignored?

I will never know why multiple doctors chose to brush off my concerns about very real symptoms of very real illnesses. I’ll never know if other patients were similarly dismissed. But I do know that an injustice was done.

I am so grateful that I took my health into my own hands. It’s not easy, and sometimes I forget to fight back, but I’m trying. And every time I come across another symptom that my doctors overlooked or brushed off, it’s a reminder that it is worth every bit of effort I expend to continue pursuing the treatments that believe are best. From now on, I choose to see my curved fingernails as a reminder that I need to make my own decisions about what is relevant to my health. I won’t be brushed off again.


What a difference a year can make

December 30, 2014

As I made plans for New Year’s Eve this week, I suddenly remembered last year. The difference is startling.

Last year, I didn’t want to go out. I had no exciting plans, but even if I’d had them, I probably would have skipped them. I was sad, anxious, and overwhelmed. My grandfather had just passed away. I was still reeling from the passing of my grandmother almost exactly one year earlier. My financial situation was precarious. My hearing for social security benefits was still a few weeks away. My long term disability claim was about to be reviewed and possibly denied. My health was lousy. I was trying so hard to get better and I just couldn’t seem to make the progress that I wanted to make. I had no desire to celebrate the end of such a crappy year, and I wasn’t filled with hope or anticipation for the coming year. I dreaded attending any sort of celebration with happy, optimistic people. So when friends invited me over to hang out, making it clear it would be an early night, that sounded perfect. We talked. We played board games. And when midnight rolled around I was at home in my pajamas, watching the fireworks alone on tv.

By January 2, life had resumed as normal, and I continued plodding along.

This year is difference. I’m not looking forward to some wild, crazy night. But then, even with perfect health I probably still wouldn’t be. I guess that’s what age does to you. I don’t feel the need to celebrate, but I also don’t mind it. Some friends want to get together for a low key evening of talking, drinking, eating, and playing board games (we all love Settlers of Catan) and that sounds just about right to me. We’ll all toast the new year in together, but we won’t stay out too long past midnight. 2 couples have young children who will wake them up early and the other person will get up early for bird watching the next morning. So even if I didn’t need to get to bed at a reasonable time, everyone else will probably be leaving by 1am anyway.

But it’s more than the logistics, of course. This year I saw such improvement. I recently lost another grandparent and that has been difficult, but his final weeks and days were not as horribly painful as the others’. I lost my long term disability insurance coverage but I gained social security. More than that, I no longer have to worry about either one. The lack of worry has had an enormous impact on the improvement of my health. On top of that, I have stable health insurance for the first time in years. With the ability to see doctors and try new treatments, and with the lack of stress, not to mention with another year of the previous treatments under my belt, I’ve seen some huge improvements in the last year. Sure, I still have big health problems, but they’re more manageable and I have more reason to be hopeful.

I still have health-related problems that I’m trying to figure out. I want to see some doctors that don’t take my insurance. Social security disability doesn’t come close to paying all of my bills. I’m still not sure what’s causing some symptoms. I’m still reacting badly to some medications. But overall, I feel better enough that I can be optimistic that I’ll figure out ways to handle all of those issues sooner or later.

It’s not perfect, but it’s better.

One year passes quickly, but it’s really a long time. 365 days. 52 weeks. 8760 hours. It’s going to pass no matter what, so the best we can do is hope that as it does, our lives will be good and our health will improve, or at least not get worse. Then we need to do all we can to make those hopes a reality.

I don’t know how I’ll be feeling 1 year from now. Maybe better. Maybe worse. Maybe the same. But I sure as hell hope I’m doing better. And I hope you are too.

As we welcome 2015 and those 8760 hours begin passing, I will be hoping that you and I all see some good times, some improvement in our health, and some ways to manage the difficulties we face.

Here’s to us.