Informed Consent

It was great to see a conversation about informed consent taking place at Stanford's MedX Conference on September 18. I have  put these tweets in a storify called Informed Consent at MedX. It's an important topic and I was happy to collect them in one spot. The MedX stream went so fast it was hard to get much that is verbatim.

Here's my view on some aspects.

In surgery you expect to know what is going to be done during your operation. Consenting to a procedure based on the expected results is not good enough. For instance for a forefoot reconstruction I don't think it is adequate to be told that your toes will be straightened. For my first operation the only way I was aware of the actual procedure used on my toes was to read the file. The only reason I was able to was that I was left waiting in a hall with my file and nothing to do. Needless to say I was surprised.

                                        Imagine this is me in the hall

That happened years ago but it is a more recent example of how not to do Informed Consent.  For this situation I can almost visualize a Walking Gallery jacket. I was having a toe shortened so I would be able to wear shoes more comfortably. Once I was sedated and lying on the gurney outside of the operating room the surgeon came out for a talk about the two possible methods he could use to do the procedure. As a sedated 'people pleaser", I chose the method that was easier for him and signed the consent. I still have to look at the results every day. It's not pretty. Now only doctors and students see my feet.

                                     (and everyone else  in the world)

In market research we often worked on projects for banks about credit card holders. Basically there are two types of customers. Transactors who pay in full every month and Revolvers who pay less than the balance. You might wonder how this relates to informed consent? 

I found a study about consent stating that many doctors look at the informed consent as a transaction, not an ongoing process. It is something that needs to be dealt with because of potential liability. The idea that it is part of patient education has passed them by.

The whole abstract of this interesting paper is included here because the points the points the authors make are so significant. 

Beyond Informed Consent: Educating the Patient
Lawrence H. Brenner, JD, Alison Tytell Brenner, BA, and Daniel Horowitz, MD

Based upon our interpretation of the literature and experience, we make the following recommendations: (1) The informed consent form is not a substitute for educating a patient. It is merely evidence that appropriate discussion occurred. In addition to assuring that the patient has signed the informed consent document, these discussions must occur. (2) The forms should be designed to be understandable, and all care should be taken to ensure that comprehension is achieved, and the process should be viewed as a tool to educate rather than waive liability. (3) The surgeon should avoid the paternalistic approach in dealing with uncertainty and, instead, use uncertainty as the foundation for forming a therapeutic alliance. (4) A well-educated patient does not need to be presented with an exhaustive list of every conceivable complication. Rather, an educated patient needs to be an active participant in a dialogue about the inherent risks of the surgery that are important to the individual decision-making process, ie, the risks that are specifically of concern to that patient. For example, the complications of hand surgery may be more material to a concert pianist than the average patient. (5) An understandable note in the medical record that a discussion has occurred with the patient and/or the family may be far more effective as evidence of the discussion than a lengthy signed but incomprehensible form.

Becoming an Informed Patient

Suppose you were just diagnosed with a health problem that is serious or will last for a long time. It's probably a complete shock to you and you can barely remember the terms that the doctor used when he told you the diagnosis. If you are back home with nothing in hand you could call the office and ask if they have any brochures or info booklets they can send you or that you can pick up. 

If you are at or near a hospital you could check on whether there is a patient library. If you make this a starting point the librarian can direct you to publications and pamphlets that are on hand, and also recommend some internet sites that are reputable and understandable. One advantage with a patient library is the variety of languages - they try to accommodate all patients in the language they are most comfortable with, another is the intelligent interest that the staff takes to help you.

                 Paul B. Helliwell Patient and Family Library at Toronto Western Hospital

You need to start somewhere and you don't want to waste your time on sites that try to sell you products that are both very expensive and ineffective. Don't forget, even a placebo (non-active version of medication) "cures" some people. If it sounds too good to be true, it is.

                                      Models in the patient library

The information from the doctor and hospital library should give you some ideas for further reading as well. It will help you a lot to know the "vocabulary" of the disease. Next time you go to an appointment you will understand more and ask better questions if you know the correct terms.

It is helpful to keep a record of your appointments, procedures, treatments and lab reports. A loose-leaf binder is good. It can expand as you need.  Another necessary item is an up-to-date list of all of your medications with dosages. Take these with you to all medical appointments. Here is a link to a post by Lisa Bonchek Adams about the way she uses her binder.

Another place to find information and possible support is the website of the national organization specific to your disease (best for common problems, less helpful for rare disease). As an example The Arthritis Society in Canada has information, videos and 'Taking Charge of Arthritis' programs as well as physiotherapists, occupational therapists, social workers and online community. Sites like that are a big help.

When looking at internet sites those that are .gov or .org are usually the most reliable.

Other health care professionals also are a good way to collect more info and ideas. If you see a physiotherapist or an occupational therapist they also have a little more time to look at You and help with encouragement and relevant personalized advice.

There are many patient groups that you can join but finding a good one can take time. I have benefited from advice and support on Rheumatoid Arthritis, Shingles, Sjogren's Syndrome and Fuchs Dystrophy to name a few. You often find a member or moderator who is a "patient expert" in these groups. Good ones usually point out that any advice they or the group offer is not medical advice so you should check with a doctor. Here is a Point of view blog post by Dr David Lee Scher about Online Patient Communities.

Often when you want to complain or talk about a problem you might not want to make those close to you worry more. Sharing with virtual friends takes pressure off of your real life relationships.

In any health category there are people who stand out clearly as well-informed patients and it's worth learning from them. They go further than just trying to help themselves. They share information and they advocate for more research, better treatment and change for the good. 

                                             Glastonbury Maze

With online communities you should make an attempt to find out who is behind the site and what the privacy policies are. That helps you find out the motive for the existence of the group. In Yahoo health groups as an example, you know that Yahoo hosts groups to deliver advertising for sponsors. That's clear cut. If you can't find a sponsor name when you look for it, it could be that the payoff for the sponsor is the information you provide.

Here are some bonus tips from good friends in my online support group. We've known each other for many years now.

Here's one from Roze:
"I learned early that my health was my responsibility.  I don't go to doctors who don't listen to me and if I have a question I research it and ask my doctor for his opinion.  When it's down to the wire for a decision on my care I realize it is my choice and my call." 

                                                                        Lulu

And great tips from Julie too

"For many years, I thought doctors were "God" and believed everything that they told me and went along with their suggestions.  I found out when my Mother was ill that some treatments probably weren't necessary or helpful and just caused suffering.

I decided then to become more informed.  I bought some medical books and carefully read them.  A man that I worked with that had ties to a big Medical Facility had the Merck Manual.  Although most of the language was for physicians, I could decipher most of the information.  The more I learned, the more I discovered that there were usually alternatives. 

When I first got RA, I didn't know anything about the disease.  I took every pamphlet from the rheumatologists office and read each one thoroughly (I still have them after 20+ years).

NOW - there is the internet with tons of information on any subject that you might like to know more about.  I am kind of a researcher anyway, so I spent quite a bit of time researching different health problems and medications.

I no longer submit to unneeded treatments or tests.  I learned that you can refuse a procedure if you want to do that.  Sometimes, I think physicians recommend tests just because they own the equipment and can make money by using them.

When I go to a physician with a problem, I research the problem first so that I will be somewhat knowledgeable.  Then, instead of giving the doctor MY diagnosis, I let him first tell me what he/she thinks the problem is and how to treat it.  I was guilty of going in and telling doctors what I thought was wrong and how to proceed. After all, I am paying the doctor for his medical education and experience.  If I disagree, then I will mention that perhaps another treatment might be better and see what the expert says.  I believe that people have to look out for themselves when it comes to medical care.

A brilliant professor that I had in college told his students to "pick other peoples brains".  I always try to do that and get information that I otherwise would not know.  I think that nurses that work in hospitals always have good suggestions and know who the best doctors are." 

I particularly like Julie's last 2 paragraphs.  

This is not a comprehensive list of suggestions. Feel free to add more in the comments. One thing missing is the knowledge and confidence you can gain by volunteering. Here's a link to my blog post called Volunteering With RA and another that talks about how volunteering expands your sense of time.

The "Old Bags" Event for Sjogrens

There are some talented and generous women in the Hamilton/Burlington area who call themselves "The Blossom Group." They help deserving organizations and have raised hundreds of thousands of dollars over the years for non-profits. Their hallmark is amazing creativity and an ability to get support from the community for the events they plan. 

I heard of one event that was attended by some older ladies who are still talking about the dashing and generous firemen who escorted them to their tables. 

                                Image from WikimediaCommons Saperaud

For this new project for the Sjogren's Society of Canada they are calling themselves "The BAGettes."  The event they have planned is "The Old Bags Cocktail Party and Fashion Show" and it's occurring on Thursday September 26 in Hamilton. It sounds like a major source of good laughs to me.

Lynn Spence from CityLine is doing the Fashion Show with smashing models. Deirdre Pike is the MC for the evening. Food, wine and door prizes are included, and 20 really high end bags will be auctioned off.  There will also be 200 bags that will be sold for a modest price. The wonderful firemen are again donating their services. You can't take them home but maybe a picture?

                                            Lynn Spence

This is a major event for the Sjogren's Society to help fund research and I can't imagine a better group of organizers.  The tickets are $75 and you will receive a tax receipt for a large portion of the cost since so much of it is a donation.

For Tickets: Phone 905-679-1809 or go on-line (www.sjogrenscanada.org) and pay through pay-pal.  See you on the 26^th in Hamilton!

Things Are Different At The Doctor

This week I had to go to see my GP doctor for a visit because I have been upping my dosage of methotrexate (MTX) to the maximum. (doctors' orders) It was a bit difficult to find a way to manage this but I did. The only problem that arose has been the development of stubborn mouth sores that the usual treatments did nothing to help.

                                          injectable methotrexate

To prepare for the appointment the first thing I did to find information was to ask fellow members in an online RA group about treatments they had used successfully. I got this answer "My primary care physician prescribed a paste called triamcinolone .. that seems to work overnight for me.  I think it came in a 0.1% paste.  It really helped  me. I put it on right before bed because it is pasty and gritty...but did the trick." 

Next I checked Dr. Irwin Lim's blog called BJC Health's Connected Care. He's an Australian rheumatologist who practices in a team setting in Sydney, Australia. I knew that one of his most popular posts ever was about methotrexate, so after reading it again I asked him about mouth ulcers and MTX in the comments section. He said he uses folinic acid and sometimes lowers the dosage in his patients. 

                                          At the doctor

That meant that when I walked into my doctor's office I already knew a lot about the issues and possible solutions. These prior interactions gave me an understanding that seemed to be well founded.  When the doctor suggested trying an alcohol free mouthwash I was confident enough of my information to request what my friend suggested and others validated. 

Thank goodness I did not have to try to convince a friend who is in healthcare that it was a good treatment. She's a skeptic who said "The sores were probably getting better already" when I told her how well it had worked.

Thinking back to my past history of doctor visits I used to be ready to accept the first solution or idea presented. In some cases that led to more visits. Being a meek and uninformed patient seldom helped me.

Being an active participant in your own care may come naturally, but it was a skill I had to learn. Reading online journals, articles and about the experiences of other patients in forums and blogs helped me to gain confidence in myself. Now even when I'm not asked I join the discussion and ask questions as well.

                                        Strong and active patient

With this collaborative approach I see my doctor less often. It took me until now to notice how much of a change there has been from the early days. This week it seemed so clear that things were different.

Here is what Stephen Wilkins says about two different ways of looking at what is popularly called patient engagement (which means the active involvement of the patient), and who benefits from these approaches. His ideas about two outlooks he has observed in health care ring true to me.  Are we engaged as patients "to advance our activation, quality of care, clinical outcomes and the patient experience" or is the intention to make us a source of cheap labor?

We'll keep our eyes on that issue.

 

The Best Judge of How You're Doing With RA

For a long time now it has been easy to find stories online about other people's experiences with treatment of autoimmune diseases. Some are from patients who are frustrated by doctors who treat them based on their lab test results.

                                Semi shredded lab tests and X-ray reports

Those doctors don't seem at all like the ones I "meet" in social media, and are certainly not like my own doctor. The main area that slowed down treatment in my case was a lack of "the language" and lack of knowledge about treatment strategies.

Dr Theodore Pincus's recent article titled "Documenting the Value of Care for Rheumatoid Arthritis, Analogous to Hypertension, Diabetes, and Hyperlipidemia: Is Control of Patient Self-Report Measures of Global Estimate and Physical Function More Valuable Than Laboratory Tests, Radiographs, Indices, or Remission Criteria?" is at this link. That is one of the longest titles ever.

He says that there is no single biomarker for diagnosis, management or prognosis in RA patients. In fact the most significant way to measure the future quality and quantity of life is the individual patient estimate of status and physical function on the Rapid3 or MDHAQ form. He sees this as the best way to explain improvement in quality of life with biologic therapies.

He specifically states that "The most significant markers for future quality of life and premature mortality in RA are not laboratory tests, radiographs, indices, or remission criteria but individual patient self-report measures of patient global estimate of status or physical function." I take this to mean that YOU are the best judge of how you are doing.

                                                            YOU at the center

Dr Pincus is consistent in what he says. I read this article in The Rheumatologist from 2011 where he discusses past and current research and usage of the MDHAQ and RAPID3 scores from patient questionnaires and his appreciation of their value. That makes so much more sense than looking at markers and telling patients who are miserable  "Just look at these lab reports. You're doing improving nicely."

I hope the new paper from Dr Pincus, Dr Castrejon and Dr Yacizi will help to enlighten some of their fellow rheumatologists.

These two charts that I took out of the article in The Rheumatologist really struck me. The top one is pain and its effect on mortality. The lower one is the influence of exercise on mortality.

They measure survival rates from a population in Finland. It's shocking to see what a difference exercise makes to your life and how little pain alone is affects it.  If that doesn't make people exercise nothing will. 

I spent years not exercising because I felt that pain was a good reason to avoid it. Not knowing then what I know now, in my mind pain trumped everything.  

 

                                                        Picture from Arthro-Pilates.com

Here's another significant paper:

Gain in Quality-adjusted Life-years in Patients with Rheumatoid Arthritis During 1 Year of Biological Therapy: A Prospective Study in Clinical Practice http://www.jrheum.org/cgi/content/abstract/40/9/1479

How To Develop Chronic Patient Syndrome

There are many stories about waste in healthcare. Some are ridiculous and some are based on misunderstandings and lack of knowledge.

Here's my waste story: While I was being treated for RA, injectable methotrexate was prescribed for me because the pills caused too much nausea. The shots were intramuscular and I assumed that I needed to have a doctor administer the injections just like with gold shots.  

So every Wednesday afternoon I would leave work early, go to the doctors office, park and wait (and wait). This went on for seven years. That means 364+ extra doctor visits and at least 1000 hours of my time that was wasted. Not to even mention the white knuckle winter trips.

                                    www.transportation-tech.com

My rheumatologist then happened to suggest a clinical trial.  As part of the start up process for it I met with a nurse for an interview and in the course of the discussion she asked why I did not inject myself. Thank goodness she did. 

I had seen at least 10 different doctors in those 7 years, allowing for travel, locums and vacations and not one of them said a word about this possibility. At last I was spared the weekly visit!

That is why I suggest that in some chronic diseases there should be a resource person or advice line, ideally staffed by a nurse who has the time to discuss treatment choices, possibilities and ways to make life with a chronic disease easier. If it had not been for that one nurse a lot more time and productivity would have been wasted.

Lego Nurse

This new service would give non urgent sensible advice to patients with chronic illness online or by phone. Of course the answer may often have to be "Check with your doctor" but even that is a helpful answer because you have an opinion on the relative seriousness of the question.

And with a few stories like mine resolved every week the position would pay for itself.

Of course seeing my doctor for those hundreds of extra visits has led to us having a very good relationship based on my chronic patient syndrome. Yes, you develop that "disease" by seeing the doctor often.

September is Arthritis Month in Canada

This is the new banner from The Arthritis Research Centre of Canada. You'll start seeing it on September 2nd, just in time for Arthritis Month in Canada. You can download it and add a copy to your Facebook page or blog at this link. Please use it to let people know that this is our month to tell our stories.

One look at it and you can see the main message: Arthritis is everyone's disease, no matter what your age or background. Unfortunately it does hit some groups harder than others and that's where research plays such a big part - we need to find out why some people are more susceptible. In doing research hopefully we will find out more about the disease and that will help all of us.

There are other ways that it can be seen as everyone's disease. Many of us see the effects through our friends or relatives with arthritis. If we are among the few who don't know anyone with it, we are still affected by the huge cost to society and to the productivity of our countries.  In Canada alone it cost the economy 22.3 billion dollars in the year 2000, and even with a cost that huge we are only #11 in treatment and funding. The US is ranked very close to us, but of course their costs are much higher given the relative size of the population.

Internationally joint and muscle problems are the most common causes of disability and the frequency is rising.  

We can make a difference by advocating for more research and by donating to fund research, but the biggest difference we can all make is  by looking at what are called "modifiable risk factors". It should surprise no one to find out that Dr Leachon is right on the money with this prescription which he is willing to share with us.

                         Dr Leachon's Healthy Lifestyle Checklist

In an article related to Dr Leachon's guidelines here are 5 areas where change for the better will cause you to have a longer life and to be healthier for a greater percentage of your years. They are smoking, alcohol, diet, physical activity and stress. You know which one is your weak point!  So to celebrate Arthritis Month just pick one of the risk factors that you can improve and work on it! 

This has led to my husband getting more advice from me on healthy choices. His reaction: "Oh no, this is stressing me out."