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?


This never happened: When healthcare is about health

November 24, 2014

We (society) throw around the term “healthcare” a lot in political debates, media, and daily life. We use it to mean all care related to our health, but that’s not what “healthcare” really is.

Occasionally, though, someone flouts convention and choose to focus on actual health. I forget how rare this is until I 11-24-2014 10-18-13 PMregister my own surprise when it happens. Today was one of those days.

I’ve been having trouble adjusting to my new CPAP setup. The doctor suggested I get fitted for a different type of mask. The CPAP company has a guy, C, who handles this. I met with him for my original mask fitting. He came to my house to set up the CPAP the first time around. He came out to fix the CPAP when I had problems. He came back with the new setup last month. And today I saw him for another mask fitting. We greeted each other like old friends.

C showed me my two options and explained how they worked. He took his time, as if he had no other appointments. He answered every question. He never rushed me or made me feel bad for asking so many questions. Isn’t that how it should always be. But it isn’t.

I chose a new mask, excited, as always, at the prospect of improved sleep. C rummaged through a drawer, searching for the right type and size, and pulled out a new mask. He ripped open the bag, and I commented on how I didn’t expect to walk out with a new mask. He said, “This never happened,” and I grinned and agreed. It wasn’t the first time someone in the medical field had said that to me when giving me proper healthcare, and I doubt it will be the last.

The insurance coverage of a CPAP is incredibly complicated, but at best they replace the mask and tubing once every three months. The filter only gets replaced every 6 months, I think, and the machine should last for several years. I figured I was 6 weeks away from qualifying from a new mask. I asked C about that, and he explained that this never happened, and that he’d submit the paperwork next month, when the insurance would cover it. I suppose I’ll have to make this mask last longer than it should so that my supply schedule will line up with the insurance paperwork. But for now, I’m just so excited to try out the new mask tonight!

C knows his job. He knows what boundaries he can push. That’s clear. But he also clearly wants to help patients. He didn’t have to give me that mask. He gets nothing in return, except the knowledge that he’s helping me. So why did he do it?

No, that’s the wrong question. The question is, why doesn’t everyone else do it?

Nope, wrong again. The real question is, why is it necessary to do it? Why must someone break the rules to provide good healthcare? Why doesn’t our system focus on health as a top priority?

If our system focused on health, a new CPAP mask for me would be covered. So would many other things. I began to list them here, but why bother? We know what they are. I’ve discussed them so many times before. And they aren’t the point, at least not individually. It isn’t simply about what’s paid for, but an attitude. I would like medical appointments that aren’t rushed, doctors who don’t have to worry about malpractice suits at every turn, and practitioners to consult with their colleagues on every case to be sure that nothing is missed. I want to see a system where the goal of every examination, test, treatment, and discussion is optimizing the patient’s health.

Because what’s healthcare, if it’s not about optimizing health?


Wishing my health insurance covered the other things that help the pain

September 16, 2014

What my doctors say will help me (and I agree): massage, acupuncture, medical marijuana, physical therapy.

What my health insurance covers: opioids and other painkillers, physical therapy.

Does anyone else see a problem here?

I was thinking about this today during my massage. Technically, I can’t really afford it, but I’ve been trying to get at least two a year, using birthday and Chanukah money from my parents. I should put that money towards other things, like rent, but it just helps the pain so much!

My doctor wants me to get a massage at least once a month. My physical therapist wants me to get massages even more often than that. They each brought up the subject, not me. I never suggested it. But my insurance doesn’t cover it. So I pay $70 for an hour-long therapeutic massage, and I feel grateful that I can get that “cheap” rate. The massage therapist comes to my physical therapist’s office a few times a week and books up far in advance. She actually just added more hours to accommodate the growing demand. Yes, she plays the soft music and dims the lights. But she also keeps a detailed chart, applies the hard pressure I like, and manages to work out some of my always-present knots. She’s wonderful.

During today’s massage I thought about how frustrating it is that my insurance doesn’t pay for something that helps my pain so much. And then I dreamed about winning the lottery and hiring this woman to come to my home to give me a massage every week – oh, what heaven that would be! But back in the real world it just doesn’t work that way. And I know I’m incredibly fortunate to be able to get any massages at all. So many people can’t.

Still, how nice would it be if my so-called “health insurance” covered things that actually improved my health and my quality of life?!


When healthcare talk is traumatizing

August 24, 2014

I’ve been noticing a disturbing trend and I’m not sure what to do about it. It’s been brewing for a while, but a couple of conversations recently made me realize how problematic it’s become.

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First there was the conversation with a volunteer for one of the gubernatorial candidates. We were in a social situation, but when I asked about her volunteer work, the conversation turned to that. She started talking about his plan to make our state a single-payer healthcare system. I wanted to calmly explain why I didn’t think this would work. I remained mostly (but not entirely) calm on the outside, but on the inside I was boiling, thinking about the many injustices I have faced within the system and how the government certainly didn’t make it any better.

The second conversation was a few hours ago. A half dozen of us were hanging out after lunch, chatting. Then one woman asked us if we’d ever faced discrimination in healthcare due to our sexual orientation (we’re all bisexual.) This isn’t something I’ve experienced, so it was safe territory, right? But just hearing people talk about their experiences was very upsetting to me. It made me think about all of the similar experiences I’d faced that weren’t discriminatory, but were hurtful nonetheless. It made me want to share my own stories that were about healthcare, but that had nothing to do with biphobia. As they talked, I remembered incidents that I’d forgotten about. I thought about recent incidents that were still fresh.

And I got upset.

Again, I stayed mostly (but not entirely) calm on the outside, but inside I was simmering, ready to explode like a volcano. I wanted to yell, to cry, to ask for understanding, to plead for someone to help.

That’s not normal. It’s not healthy. I know it. But I don’t know what to do about it. I saw the warning signs of this many months ago and I starting looking for a therapist who had experience with chronic illness issues. But then I started having health insurance uncertainties, so I decided to hold off until they were settled. Well, they’re finally settled, but now I have a different problem. For personal reasons, I don’t want to see a therapist at one of the major hospitals. I would only see a private practice therapist. And private practice therapists generally don’t take medicare and medicaid for health insurance. And I can’t afford to pay out of pocket for someone.

The truth is, I probably should have been seeing a therapist before now anyway, but I’ve always managed to handle these things on my own. I tried therapy a few times and never got anything out of it. I’m pretty self aware, so I made do. But this is different. I don’t know how to handle the anger, frustration, fear, and desperation I feel whenever anyone talks about doctors, healthcare, or health insurance. Feeling these emotions about my own situation is bad enough, but I shouldn’t be feeling them whenever the topic is broached in a way that has nothing to do with me. I should be able to talk to a friend about their own medical condition without this kind of trigger response.

I just wish I knew how to make that happen.

What about you? Have you felt this way at all? Do you have trouble talking about other people’s medical issues? Do you know of any ways to get inexpensive mental health care in the U.S. or, even better, in Massachusetts? Please comment below and let me know about your experiences.


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