More Musings (of a Distractible Kind) - Latest Comments

Re: Catching Some Z’s

Sue — Mon, 20 May 2013 11:09:36 -0000

I, too, was diagnosed with bronchitis and given a Z-pak. It was usless. Went back to the doctor and was given ciprofloxacn. Today is the 10 day taking it and I am going back to the doctor AGAIN! STILL coughing up hockers and blowing my nose for the first 1/2 of the day. The only thing gone is the terrible cough that I am sure would be gone even if I didn't take antibiotics. Won't take yet another antibiotic! I am convinced that this article is right is saying "bronchitis" does NOT respond to antibiotics. Maybe an inhailer to open up sinuses. I went to the store this a.m. and going to take garlic capsules 4 times a day. Antibiotics are too overused in this country.

Re: A Letter to Patients With Chronic Disease

Hubby's Pain — Sun, 19 May 2013 12:58:06 -0000

Thank you so much for this! It is so affirming for chronic pain patients and their families who must advocate for themselves. The sad thing about this is that due to the "cognitive impairment" (brain fog or as my husband calls it "feeling drunk and out of it") that many pain sufferers experience, this may come across as a patient either appearing to seek drugs or , despite making it to the office despite all odds, can not eloquently speak nor stand up for themselves. They really want the doctor just to make them feel better, to make the pain go away or give them a diagnosis to hang on to.

I have shared this letter with pain groups and organizations, members of government, media and anyone who I think will listen here in Canada!

My husband has been living with Chronic Pain for 26 years. It is at a 10/10 24/7, 365 days a year. Pain does not take a holiday.

I admire the honesty in your letter. Thank you so much.

Re: A Letter to Patients With Chronic Disease

Vickie Isaac — Sun, 19 May 2013 10:46:02 -0000

After taking 3 generations of chronically ill family members to dozens of doctors, and reading forums for several different chronic illnesses, I think the problem is that Western medicine has very little to offer chronically ill patients. In fact it makes them sicker.
The only thing that improves chronic illness is being open minded enough to study alternative healing. Integrative medicine and chiropractic and Chinese medicine seem to be much more effective. The things that seem to be helping the most are essential oils, NAET allergy desensitization, nutrition, balancing gut flora, of course as much exercise as they can tolerate without over-exercising. My daughter's chronic illness appears to have been caused, at least, in part, by black mold, so her healing will involve some detoxing

Re: A Letter to Patients With Chronic Disease

Veronica — Sun, 19 May 2013 10:43:05 -0000

I'm in a unique position of being chronically, critically ill with a sister-in-law that treats similar diseases in kids. I've known her for many years prior to my illness and learned many aspects of being a doctor as a result. Her pager/cell phone has gone off during Thanksgiving dinner and family birthdays. During vacations, she is rarely able to make it a day without a call from someone in her medical group contacting her about a patient. She is always a doctor, always a wife, mom, daughter and sister. As a patient, I try to remember that my doctors are all people and that is helpful. I want them to be super-human and I want them to know everything and fix everything but some things can't be fixed. We all just have to work together to make the best of a difficult situation. Thanks to all my wonderful doctors for continuing to try.

Re: Failure

PiperAfloat — Sat, 18 May 2013 03:14:51 -0000

"you don’t always have to fix things to make them better. You don’t always have to relieve suffering to give care. It’s great when you do, but in the end the most important thing is to be there"

As we say in rural Mass., "Ah, yu'." Translation: you got it.

The question in my eyes, which looks like guarded hope when I meet a new doc, is not "can you fix me?" but "will you not abandon me? Will you treat me like the decent, well-informed person I am? Will you be honest with me?"

I've got a few who seem to have the right answer. I'm lucky!

Re: A Letter to Patients With Chronic Disease

Julia Poole — Fri, 17 May 2013 10:01:31 -0000

I appreciate your outlook & honesty!

Re: To Know and be Known

PiperAfloat — Fri, 17 May 2013 01:36:18 -0000

I'm a sometime nurse (both coasts, several teaching hospitals) with a painful and debilitating chronic disease which I've had for over a decade. I'm also a writer, and a *former* software geek -- because CRPS has impaired my brain too much to keep up with software.

I read 5 of your posts in one sitting (and now I have to insert a crowbar under my butt to get off this chair) and I feel well-rewarded. I won't come charging into your office demanding to become a patient, in part because I know you're being read by at least some of those docs who need to read this sort of thing and then wonder, in the dark of night when all the outer voices are stilled, whether it's time to change a few habits. Maybe find a new line of work, in some cases.

You're right here, in case nobody else has said it. I've learned not to come on too strong. I've learned to give them a chance to be heard, even if I know before they open their mouths that they're on the wrong track entirely. It has to feel like a 2-way street, even though only one of us is being paid and the other will pay the heaviest price for mistakes. Despite being so lopsided, it is, indeed, Relationships 101 and -- regardless of relative education level and alphabet soup after names -- if you don't treat your power-wielders with respect, they will shut you out, and that's the end of it. Speak softly, and carry a thick folio.

I've tutored an awful lot of people about how to handle doctors, medical records, and this ghastly system we are forced to depend on for our lives. I point out that, despite the evidence, these are human beings with pulses and mortgages and distractions galore, who have to come into work day after day and face another cataract of need.

Those of us who get shuttled about among doctors don't necessarily get to develop relationships, and have to find other ways to be understood and properly believed. It's hard, and inappropriate, not to respond assertively when the overeducated, underperforming white-coated bozo in front of you has made 3 consecutive recommendations that would threaten your function or even your life, especially knowing that those recommendations are going into your file and will take years to obliterate, coming back to haunt you and threaten you again and again. Then, it's certainly time to come on strong. Of course.

I'm a huge fan of patient-created documentation, from timelines of events to symptom-tracking tools to customized pain-rating scales which specify mental and physical impairments at each level. "If it isn't written, it didn't happen" turned to the patient's benefit.

It helps docs come to terms with this complex case much better, and the delighted and grateful thanks I get when I hand it over always surprise me by their intensity. More patients need to do this. It's impossible to remember and understand all I've been through in one interview -- or 10. It also weeds out the real destructo-bunnies very quickly; they look at it like it's homework from their least favorite class, or tell me I think about it too much (a fatuous remark to beat all.) It's a great litmus test.

I'm glad you're writing. I'm glad you're working to a new model. And I'm also glad you're developing a usable, meaningful medical-records system. That's about 40 years overdue. I hope you get great funding for it and make a mint, then perhaps set up a medical school for rehumanizing doctors...

Re: A Letter to Patients With Chronic Disease

FibroAngel — Thu, 16 May 2013 08:08:55 -0000

As a creator of a several support sites for those with Fibro and Lupus, as someone who has spent countless hours searching and creating "Fibro Friendly Doctor lists. As a patient myself whose own doctor missed a crucial interaction in meds that nearly ended my life, the two of us shedding tears together when I told him it was okay. Reading this as someone who has been brushed off by doctors, told a symptom was nothing to worry about when in reality it was a life threatening condition, someone who has been blessed also to meet a doctor new in his practice but eager to learn with me. One visit when we both knew nothing could help my pain, he sat with me, a tear slipped from his eye and down his cheek. His words I cherish still "I want more than anything to be able to fix you. I know I can't...thank you for letting me try, and not hating me for falling short" that doctor is my hero. Reading I can't hold back the tears ...thank you, thank you so much for sharing. In a world where so many of us are told by doctors that it is in our head, or rushed out of the exam room frightened we know less than before we got there. It is simply priceless to read something like this from someone in the medical profession. You are one of the heroes

Re: A Letter to Patients With Chronic Disease

Lynda Heath — Wed, 15 May 2013 23:29:02 -0000

facebook :) ps thanks .... it helps me understand a little more about teaching my doc how much it sucks to be me lol

Re: A Letter to Patients With Chronic Disease

Dr. Rob — Wed, 15 May 2013 22:50:56 -0000

No problem. I am curios as to where all of this sudden traffic is coming from.

Re: A Letter to Patients With Chronic Disease

Dr. Rob — Wed, 15 May 2013 22:49:58 -0000

Just so you know, I am not in any way excusing doctors. The sole intent of this post was to explain one of the main reasons people with chronic illness get such bad care: doctors are flawed and insecure. In giving this explanation I am not offering an excuse. There is no excuse. It is just the reality you face, that you will find very few doctors who are emotionally equipped to handle patients who don't get better. My experience is that many patients wonder if they are the cause of the doctor's bad reaction, or wonder if they have unrealistic expectations. No, you should expect doctors to treat you well, and the doctors are the problem much of the time. That is what I am trying to say.

Re: A Letter to Patients With Chronic Disease

2sick2live 2tired2die — Wed, 15 May 2013 21:47:56 -0000

Thank You!!! Dr Rob. I hope this can help a lot of people avoid the mistakes I've finally come to understand and fix after a couple of decades. :)

Re: A Letter to Patients With Chronic Disease

Jessica — Wed, 15 May 2013 21:16:07 -0000

Everything you say about a doctor's fallibility and the emotions, and sometimes insecurity, that comes with it is touching. I like to remind myself of the human side that becomes so hidden behind the coat. However, I think it is very important to note one error that many doctors have, even the must caring ones: You expect respect, understanding, and trust from an individual who receives none of that in return, for the most part, in the immediate sense. When you walk into a room, you expect that your job demands these things from other individuals in able to efficiently and properly address issues, because your qualifications set you apart. However, I am a teacher. I have a Master's degree and am working towards my Ph.D. I am a part of Mensa. Yet, I also teach 60 hours a week on a ridiculous salary to nearly 200 high school students, which I love and care for, despite the lack of respect, understanding, and trust between us. You cannot expect those things, because you are who you are. You must give those things because it is selfless and medicine and education alike are selfless pursuits. It can be frustrating to have a patient, like myself, who spends every day in pain and who are not "fixable". Yet, it is also frustrating to me, as a teacher, to deal with kids who are not teachable, who cannot be "reached", no matter how hard I try. Their lives have predestined them for awful things, present and future. Yet, I have no choice. I cannot simply refer them out to someone else or walk away in the middle of a conversation. I cannot spend all day trying different solutions and not blame myself for their failure. The blame is not on the kid, just like it is not on the patient. And, if you blame the disease and take the frustration out on them instead, because, in their desperation, they cannot, no matter how hard they try, treat you with trust, understanding, and respect because they are so broken---then you cannot then give advice on how we should treat you specifically to make it better for you and not the patient. I realize this was an attempt to explain how patients should treat doctors, so they will, in turn, treat them better as well despite insecurities and frustration about difficult disease. Yet, I cannot have that kind of conversation, where I label my expectations, with a student who has extreme issues. They already have the world on their shoulders, so how can I expect them to give more to me? That is what you are asking of your patients---to understand you in the human sense so that the relationship can be more beneficial. Yet, no other profession works that way, not teaching or anything else. We cannot ask someone else to understand us better to do our job better. We have to, as professionals, adapt. We must trust, understand, and respect, and we must not ask for it back.

Re: DIY

Dr. Rob — Wed, 15 May 2013 18:49:41 -0000

I am definitely planning on sharing the platform I am using, not trying to capitalize on it. I have no desire to own a product I have to sell. If I can get it to work in real life (which I now believe I will), I will be hopefully not too ashamed of any flaws that are still there. Right now it is REALLY early, but it is already far, far better than anything I used from regular EMR systems.

Re: DIY

Dr. Rob — Wed, 15 May 2013 18:47:12 -0000

Yep, I've been having fun with the scripting language. It's really quite fun. I actually cut my database teeth using Crystal Reports to query both Oracle and then SQL. I'm glad, however, that I've not had to re-learn things having not really understood relationships until now. It makes intuitive sense to me now, and as an internist problem-solving nerd, this is right in my wheelhouse.

I just sat down with a software guy who has developed a lot of projects like this and I am happy to say he was impressed with my progress, given my lack of formal training.

I thought the Google glass thing was cool, although seeing things like that in pre-alpha makes you have to use a good bit of imagination to see what's possible in the future. Pretty cool, though.

Re: DIY

Mark Tyson — Wed, 15 May 2013 09:10:34 -0000

If you aren't already using it, you can vastly expand the power of what Filemaker can do by using the scripting functionality. It's a strange little scripting language. But once you crack the code, it's pretty powerful.

The downside to Filemaker is it handles relational database design very differently from 'normal' databases where everything is done by SQL. Coming from a more traditional database world, it took me forever to get comfortable with how Filemaker does things. But, between the Mac, Windows and iPad support, it's a pretty attractive platform.

I'm a semi-retired software programmer/entreprenuer & I'd be very interested to see what you have when you get a little bit down the road. I sit on a couple of hospital boards and am convinced your model of practice represents the direction we should be moving with our primary care.

BTW, here's what you can look forward to a few yeas down the road via Google Glass: http://neatocode.tumblr.com/po...

Re: Collaborators

J.K. — Tue, 14 May 2013 17:33:33 -0000

Dr. Lamberts,

I just stumbled on this blog trying to learn how to operate my new tablet. I wish I had bought one for myself years ago, I would've saved you the trouble. I am associated with a charity and we donate our services to.... well I'll simply post a link here http://www.emhr.org because it is much easier to read it there than filling up your blog with my words. We've spent years developing a system that take us "back to the future" and we are in the process of working on the next two phases of the project. We have considered suggestions and are making modifications to suit other professionals and their needs and we would surely appreciate accommodating any reasonable requests as long as they don't deviate from our Mission statement. We will gladly donate to you, or any care provider reading this, an "HCP" account to see what needs to be added to accommodate your needs.

J.K.

Re: DIY

Dia Vickery — Mon, 13 May 2013 12:03:50 -0000

I'm impressed too - especially having worked with Filemaker. I'm also excited because you're designing the type of EMR I need for my practice. Hope this is successful and you decide to offer it to others <--gentle hint

Re: DIY

MoMojeaux — Mon, 13 May 2013 09:30:34 -0000

Wow!

You never stop impressing! You understand the concepts of relational databases, and you're savvy
enough to pull it together. I don't think as much coding is needed as in
the 90s but still, you have to roll your sleeves up and dip into some kind of
code. #impressed ;)

Re: Catching Some Z’s

Robin Vanostrand — Wed, 08 May 2013 18:29:21 -0000

I get inner ear fluid. I have a eustachian tube that doesnt drain properly, The fluid makes me almost incapable of functioning. Right now I cant even swallow because it hurts so bad.....I am dizzy and feel nauseous..However, because a visit to the doctor's office doesnt shown infection, I am always told to just drink water and chew gum!
That does nothing....It will just get worse and worse until I am finally prescribed Z pak....within 2 days I am fine...But getting the antibiotics is like pulling teeth! I had a family doctor for years that understood the problem and it was always maintained. He has since retired though and I am now back to square one, chewing gum, drinking water, and getting sicker!
Why is it only certain doctors know what to do with patients with this issue....The fluid doesnt dry up on its own,You need antibiotics.......but you would think I was asking for narcotics ever time I try to get help.
Spent 5 hours today....got nowhere again, I sit chewing my gum.......feeling worse! I think more tests and training need to be done with these issues...It is awful. I will soon lose my voice, and once again try to find
a doctor that will actually prescribe me my antibiotics! I am not addicted to antibiotics truly! It is the only thing
that helps me function....Tomorrow, I will try again....uuugh..........this is awful

Re: Telling a Good Story

Ben — Wed, 08 May 2013 16:14:34 -0000

I'm a fourth year medical student excited to go into primary care. As I have rotated through different clinics, I have been coming to the conclusion that the cash-based "Concierge Medicine" model seems to be the most viable for primary care docs in the future. I have been mulling this about in my head recently - trying to run the numbers and figure out a way for it to be financially reliable for me, cost effective for patients, and to be able to ensure excellent care. And then I stumbled on this post. I'm so excited to read more of your blog and for you to keep the world updated on your progress. Thanks for sharing!

Re: More Trouble

Wound Care Nurse — Wed, 08 May 2013 07:59:44 -0000

I love the concept of less testing, less expensive therapies, education and creativity in healthcare. I am a CWOCN in a nurse-driven wound care clinic where many of our clients have little to no money for healthcare and medications, forget expensive wound care therapies. We practice evidence-based wound care and are able to heal many of our patients without expensive grafting, medications and testing. We take the time with patients to assess their education level, failed therapies, home life and willingness to comply with therapy. We educate about basic hygiene, glucose control, elevation and compression. Our assessments cover reasons for immediate referral to vascular, podiatry, infectious disease, etc. But many wounds simply need basic wound care with some persistence and creativity to make the therapy fit the patient's lifestyle. Patients are happy because we listen and create plans of care that address their specific needs. We are happy because patients heal and move on to, hopefully, less wounds in the future because of the education they received from us. There are certainly circumstances in which grafting, expensive vascular testing, referrals and medication are the necessary interventions. We just need to make educated and informed decisions about these rather than ordering them out of hand.

Re: Getting Engaged

Joyce Burkhart — Mon, 06 May 2013 10:31:46 -0000

Hi there,
I work for Planetree, an organization that created the standards for patient-centered (engaged) care about 35 years ago - and is still going strong. Although you didn't mention Planetree in this blog - you're absolutely right that it's not a strategy, it's care. One of Planetree's central tenets is access to information. This means the patient not only sees the medical record, but has it shared/interpreted - and is able to write in it. We've been helping organizations accomplish this since the late 80's.
Check us out: www.planetree.org.

Joyce Burkhart
Community and Education Coordinator - Planetree

Re: More Trouble

glasshospital — Mon, 06 May 2013 00:18:18 -0000

outed!
and parroting lines I get from folks who push back against the idea that less is more in medical care.

Re: More Trouble

Colleen Upton — Sun, 05 May 2013 21:31:10 -0000

I love the article and wish there were doctors like yourself near me in MN.