A Care Plan?

A long time ago, back when I was in a support group weekly, I was offered a care plan to complete with my doctor to make sure I kept track of my cancer treatment.... It was several pages that were copies of copies of copies and difficult to read. I got the point but decided to skip that.

There were several reasons (besides starting with the s-word) that I avoided it.

First of all, it only covered your cancer diagnosis. It didn't include other issues, like additional cancer diagnoses, and other ailments. It only covered one cancer treatment.

Second, I keep better records than my doctors. I started a spread sheet of my medical expenses for tax purposes to see if we could deduct them - and at least get credit for all the miles traveled. This has all the information I need to track my treatment and tests and appointments.

Now a new study (because we need new studies to keep researchers busy) says that they are surprised that very few breast cancer people have cancer care plans. This surprises them? I am surprised they are surprised.

They also expect the patient to sit down with their doctor to write up their plan. Does your doctor have time to sit down and fill out a several page form with you? I'm not sure mine does.

Personally, I am happy to keep track of my treatment. I usually go to the same hospital and once I give them my record number they can pull up all my ailments, medications, and allergies. I do take medical information with me when I travel in case something happened to me and I couldn't go to my regular hospital.

But seriously? I don't need a lot of paper work to drag around for one ailment.

Do you know whats in your medical records?

Do you ever look at your medical record? The hospital I go to just switched to a new system with an electronic patient portal. I can now go in and check it regularly. Since its been active for less than six months, its needs some more data but I can still see a lot of information including visit notes from doctors, test results, etc.

In recent years, I would go get printed out copies of test results anytime I wanted. At one point I became obsessed with my blood counts and created a spreadsheet of them and then found all my previous blood tests and now have records going back to 1998. And no, my red blood counts have not recovered since chemo and have remained low.

The other day the Wall Street Journal ran an article about taking charge of your medical records. And it astounds me how few people actually look at their medical records regularly.

This is important people! Medical errors can be fatal. I know I am allergic to benadryl and prednisone so if I have any kind of reaction, I need to make it clear they cannot treatment with either - and both are commonly used to treat reactions. Never mind the fact that I am also allergic to the '-cillins';  penicillin, amoxicillin, etc.

Knowledge is power. If your doctors are not able to electronically access your records, you need to make sure you keep them up to date with all your information including prescriptions, test results, procedures, and other doctor appointments.

Your medical records

In recent years, medical records have become more and more available to the patient. Some medical facilities make them available on line. Others offer them at the end of each doctor visit.

I have tried to read translate my medical records. It is not as easy as you think. If it says 'patient denies... '  that just means you said you didn't have whatever they asked you about. They are also full of vague 'doctorisms' that are not as clear to the average patient. That is fine by me.

They are full of the doctor's opinion about what is going on with me. This means they are full of the thoughts and opinions of people who went ot medical school to unravel my medical mysteries. They could probably write theses on my medical uniqueness at this point. And my unique ways - for instance if I find a 'something' its guaranteed to be a 'nothing'. But if a test finds 'something'  its guaranteed to be a 'bad thing'.

But I digress.

A medical record is a pile of doctor notes, test results, procedures, diagnoses, treatment plans, and professional medical opinions.

There is the thought process that patients should find out whats in their medical records. I agree with this. I do get copies of test results. I have been known to ask what is in my records and disagree with it.

But I am not sure I think I should be able to edit my medical record as if it was a Wiki. A medical record should stand as the medical professionals' version of me. It is sort of a reference list of my medical history (blah, blah, blah) and should be what it is and nothing else.

I could add a separate list of information which becomes the patient's side of it. I mean if the doctor said I seemed to tolerate a procedure well. I could happily record in my version that I was uncomfortable and basically it was a very sucky experience. From the doctor's point of view, I might have been uncomfortable but it wasn't a walk in the park as most medical adventures are.

I am an advocate for my health but I also respect that medical professionals went to school for their training and are working with in their professional detachment to keep the emotions out of it. I am full of emotions about me.

Which reminds me, next week I need to go pick up copies of my latest test results to make sure I keep up with  my latest.