I’m continuing to tell the story of my journey with endometrial cancer. I speak openly and honestly in these posts so if that might offend you, please feel free to check out my newsletter or my other writings instead.
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It was the $188 pregnancy test that threw me over the edge of the American Medico-Legal Landscape.
For those of you, who like me, don’t have a need for pregnancy test on a regular basis, I decided to cost check them at five local stores and one online retailer. The prices range from $5 - $20. And, the best that you get as a result from the fancy-schmancy $188 pregnancy test? It’s “presumed” that I’m not pregnant.
Unless immaculate conception has come back in style, I can assure that at the present time I’m not pregnant.
In the last month I’ve had three pregnancy tests including one the day of my hysterectomy which, unfortunately, didn’t remove all of the endometrial cancer from my body. And, hence, we will begin more treatments soon.
I don’t begrudge the medical community the fact that it takes a lot of people to provide care in this day and age. From the admissions technician and billing clerks, to the materials management folks and transporters (what my mom did at our local hospital for about a decade), to the nurses, to all of the testing and lab technicians, to the actual “providers” - doctors, physician assistants, and nurse practitioners - everyone must be paid. The facilities where care is provided also need to be clean and sterile. It takes a lot of supplies to provide care and very specialized tools. And, we all want care provided quickly and efficiently. And, all of these facilities and providers must navigate the medicolegal landscape - which in America is the exact reason why I have had to have three pregnancy tests in the last month.
However, as I’ve learned from a couple of the Facebook cancer support groups I’m in, many people don’t understand their rights and their role in their own care. I am not an expert on the topic. I’m only an expert in my own situation. Take whatever works for you and leave the rest.
Informed Consent - Understanding the Patient Role in Healthcare
The ethics of American medicine are based on the American Medical Association’s Code of Ethics. One of the most important elements of this code of ethics is the concept of informed consent. In my words, informed consent means that the doctor or provider will answer your questions to an acceptable level using the facts that they have available to them. You will then provide your consent to the treatment plan they have described.
In the best case scenario your health care team will provide you with information to properly prepare you for any procedures and/or test that you are going to have and then provide any follow-up instructions needed to recover and return to your regular activities.
For example, prior to my hysterectomy, I received a packet of instructions that included when to cease eating and drinking before surgery, a couple of special things to drink before the day of surgery, medicines to take and not take, and other physical preparations. I also received a copy of what would be my post-op instructions assuming that nothing changed. I read everything through multiple times and set up reminders for all the pre-operative tasks. I also knew from my previous surgical experiences that I’d be asked “What is being performed on you today” many times - and with five procedures being done, I had a lot to remember. While I couldn’t pronounce a couple of the medical terms, I could tell them in layperson’s terms what was being done. To make sure I could provide informed consent, I used all of the resources at my disposal to learn about all of the procedures being performed and what questions I might need to ask:
- I googled,
- asked questions of the nurse via my healthcare provide portal,
- I am in a couple of wonderful Facebook groups, and
- I talked with other friends who have gone through similar experiences.
- We are also lucky to have multiple healthcare workers in our family and I asked them the questions that confused or concerned me the most.
In addition to the packet of information I received, which was very good, I sent the doctor’s office two additional emails through their portal. These two emails contained 8 questions. All of them have led to me following a different path than I might have taken had I not asked them. Probably the most important one was how would the doctor decide if he’d increase the time of my driving restriction. From that, I learned what behavioral aspect I needed to be able to test for (that I could stomp on the brake pedal quickly without pain) in order to know I was safe to drive.
As I prepare to start chemotherapy in a few weeks, I have a list of over 70 questions - which I have no doubt will continue to grow - that I want to get answers to when we have the planning meeting with the medical team for chemo. I have no problem whatsoever in asking every one of those 70 questions to my doctors if I need to. Typically, I find that as I listen to their initial presentation that we answer more than 80% of my questions and then I can just fine-tune my understanding.
You must advocate for yourself in your health care. And, don’t worry that you might offend a doctor in asking a question. They are just human beings with a very challenging job. Be polite and respectful, but also be resolute in your determination to advocate for yourself.
Your Rights to Your Medical Records and Beyond
I’m lucky-ish to be in a health care system where I get my medical records at the exact same time as my doctor does. Unfortunately, I don’t always understand them fully but it gives me time to prepare questions for when the doc calls to go over the results with me - typically on the same day I get the results if they require follow-up care that is significant.
I read everything, thoroughly, typically multiple times. Here are the typical things I read for:
- I read one time all the way through simply to get the whole picture
- The second time I read through is slower and usually with a google tab open to look up terms I don’t know. I also usually make notes of questions in this read through.
- With a particularly complicated diagnosis, like the fact that the surgery didn’t get all the cancer, I may repeat that second read procedure multiple times before I’m satisfied I have enough understanding of what the report says to have an informed conversation with the doctor or doctors.
- When I get the bill for the services I compare it against the list of bills I’ve already received and their various statuses (have I paid them, do I have questions pending on them, are they under review because I found an error, etc.?) and then I review it against the care notes in the chart record. More on why this is important below.
In the United States, you have a legal right to your medical records, or Personal Health Information (PHI). While I don’t think the law goes far enough in making it required that providers give you a copy of your medical tests and records immediately upon receipt (as I get through the portal for my healthcare system), you do have a right to get a copy of your medical records. I also know from experience with my parents’ providers as compared to my providers that not all doctors notes are the same. All of my providers make detailed notes. With my parents’ providers over the years it has been hit or miss how good the notes have been after an appointment. In the two cases where I’ve noticed an error or a point of disagreement in the notes my doctor has made, I’ve emailed them so that it is in writing and asked that they update their notes or include my email in my chart. Both were handled by simply updating/amending their notes.
Additionally, the American Medical Association has additional Patient Rights that lay out that you have the right to ask for a second opinion, have care coordinated with other doctors (such as one closer to home or one in a new state you’re moving to), and that you have a right to have your questions answered.
As I already noted above, the questions I asked pre-hysterectomy have led me down much different paths than I would have taken had I not asked them. So, I’m glad I asked.
The other place this has come into play is billing. UGH! I have coverage through the marketplace (because in America, to have decent health insurance you should work at a company that can provide it rather than everyone having access to the same care options). I’m politically in favor of healthcare for all, but the marketplace isn’t quite it - yet.
Beyond my medical-political believes though, there is a practical lesson in here. I discovered the price of the $188 pregnancy test because I review every bill I receive for duplicative charges and charges for services I didn’t actually receive.
I’ve been billed in three different ways - and still have pending charges on my account - for a paid radiology bill that is being billed now on the third billed for services. And, when I questioned charges for a hysteroscopy that I was sure my provider told me she didn’t do and I verified in her notes that she said she didn’t do it, more than $4000 was removed from my bill. So, reading the procedure notes against the bill is always a good idea to make sure that your bill is at least pseudo accurate. And, always remember you have the right to question charges.
You also have a right to a detailed bill. I’ve heard interesting stories of hospitals simply wiping charges in totality because a patient demanded a detailed bill and the hospital couldn’t provide one. I don’t know if that’s true but I can believe it, unfortunately.
Managing Drug Interactions
One of the other weird things I’ve discovered on this journey is how little and how much all those drug interaction warnings printed on your pharmacy receipts both do and don’t matter.
The most intriguing one is that you’re not supposed to take an NSAID pain reliever (e.g. ibuprofen) with a blood thinner (e.g. Eliquis). I knew this because of a close relative who is on Eliquis already. However, I was supposed to manage pain post surgery with alternating Tylenol and Ibuprofen every 3 hours (or more as pain became more manageable). The same doctor prescribed both things but the pharmacist council was still to check with the doctor. So, check I did after enduring their night/weekend answering service. And I got this relative weak answer of “well since you won’t be on the ibuprofen for all that long, you can go ahead and take both.” I’m not supposed to be on the blood thinner that long either. I just find it frustrating that doctors don’t think through the questions patients SHOULD have about their contradictory instructions and answer them up front rather than you having to ask them.
Document everything, keep asking questions
If you made it this far, congratulations. Here are my parting words of wisdom. Document everything and keep asking questions until you feel satisfied. I actually teach a course on the topic of documenting life’s most important information for life’s most urgent moments. It’s called The Facts of Life Book. I’d love to have you join us there or in the I Wanna Be Me When I Grow Up Community where you get access to all the courses I teach now and in the future as well as special bonuses.
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