This will be a departure from my usual topics but this one comes from the heart. I post this not as a slam against medical care, or doctors, but as an empowering, enabler for you to take an active role in your health care.
When it comes to your health, you need to be your own advocate. Please don’t trust anyone else to be your champion. Not your doctor, not your family members, YOU need to do it. You are the most invested, the most greatly impacted if you get less than 100%. So YOU need to be an advocate for YOU.
Be Your Own Advocate
Delays in health care seem to be a necessary evil these days but that doesn’t mean you need to accept it or that you should. YOUR health is a priority for YOU. So if someone doesn’t call you back within the timeframe they said, call them back at that deadline. Don’t give them a few days or even a few hours. If they said they’d call you by 2pm on Tuesday, you call them at 2:10 on Tuesday saying “I haven’t heard from you. I need an update.” If they respond that they “still haven’t heard”, ask them to call again to get confirmation that the office they’re waiting to hear from has everything they need. GET that confirmation. Better yet – call those that you’re waiting to hear from directly.
True story: Serious health concern, specific tests need to be run in a particular order before treatment can begin. Several days of “nothing yet” pass, beyond all initial assurances of timing. A call to the receiving office reveals that the sending office never sent the appropriate files (or sent them to the wrong location). The receiving office hadn’t received anything and therefore, wasn’t responding because they had nothing to respond to.
The originating office didn’t double check, didn’t get confirmation, didn’t actually respond to the patients requests for updates. If the patient hadn’t been their own advocate and called directly, they’d still be waiting. Precious time would have been lost and more importantly, their life saving treatment inexcusably delayed due to “clerical error”. A poor excuse to those waiting, tormented by the difficult road ahead of them.
If you have a health issue, you need to inform yourself about that particular issue. I’m not telling you not to believe the doctors and specialists. What I am telling you is to educate yourself. You need to know the terminology that will be used. You need to know what they’re talking about. It’s up to YOU not to let people who ultimately won’t be impacted the the decisions made, make decisions on your behalf because YOU allowed them to talk over your head and YOU trusted them at face value. At some point, you’re going to need to weigh in on what they’re telling you, what treatment options to take and which ones you’ll opt out of.
If you can’t follow the conversation, you can’t make an educated decision. Please don’t let anyone make you feel like you should know what they’re talking about. Or rush you through the discussion to the point where you can’t follow it. Have the courage to say “I don’t understand.” and “Can you please explain that again / in a different way?” This is your HEALTH. There is nothing more precious to you, than YOU. If anyone needs to understand it, it’s YOU. They’re getting paid for their time. So make them explain it 20 times if you need to. This is about YOU. Not them. They are working FOR YOU.
Establish A Rapport
Health is often measured against previous results. Having a known baseline will help in diagnosing new issues, give a basis for comparison and a point to measure from.
Jumping between various doctors and walk-in clinics robs your personal health files of this critical information. Gradual progressions of conditions are impossible to measure for those who don’t know you.
True story: A patient had a nagging cough and went to a local clinic since they didn’t have a regular doctor. They got treatment and left. No follow ups. Some time later, the cough was still nagging. They went to another clinic (they had moved). A different treatment was given this time. Some time later, an acquaintance with a medical background heard the cough and asked the patient about it. They were concerned and asked them to go to their doctor, but to request further diagnostic testing. More extensive tests revealed a very serious condition that would have been more successfully treated if it had been caught much earlier.
This is no one’s fault per se. The doctors had no history to compare the patients condition to. The patient didn’t have a regular doctor. Patient files had no opportunity to follow the patient to provide context to their condition.
The failing here is the medical machine which is terribly behind the times. Patient files don’t follow patients in real time. A system which allows people to doctor-hop either by choice or by a lack of options is horribly flawed.
My recommendation to you is to find a regular doctor that you LIKE, that you feel you have a rapport with and STICK WITH THEM. If you have to go to a walk-in clinic, ask them to send the records to your regular doctor or be sure to call your doctor to tell them about it. YOUR FILES MUST BE UP TO DATE AT ALL TIMES. While a little cough here or there doesn’t sound like anything to worry about, a recurring, progressive cough IS something to worry about. Even if YOU don’t think it’s something, let your doctor know about it. They are trained to see symptoms and patterns that you might not recognize. Enable them to help YOU and assure YOUR HEALTH.
Informed Consent is:
Consent by a patient to undergo a medical or surgical treatment or to participate in an experiment after the patient understands the risks involved.
Sounds about right. No doctor should ever have the power to make decisions about you, your body or your treatment without your consent. There were horrific procedures performed on patients in the early years of conventional medicine. The medical community had a God-complex (many still do) where they would decide and force their approach on patients, essentially treating them like meat, void of presence of mind. Informed Consent was brought about so that the medical community would be forced to inform the patient of any treatments or procedures, complete with risks, so that the patient could make an educated decision. Informed Consent was born to empower patients.
Here’s where it falls down: Doctors explain what they can, what they choose to explain, they define what they feel is “enough” and pose the information in such a way that the patient feels that they’ve been appropriately informed.
Doctors are people too. They can be rushed. They can be distracted. Their information may be out of date (which they may be unaware of or simply don’t have time). They also have their own preference as to what they feel is the best approach, so will give a ‘hard sell’ for that option above others. They may have had great success with a particular approach. They may be short on time, so they’ll push the shorter option. Being business people as well, they may push the more expensive option too.
So what do you do? INFORM YOURSELF. Doctors must answer your questions if you ask them. However, sadly, many times YOU have to ask the right questions in order to get the right answers. The onus is on YOU to ask the right questions. If you’re unaware that those questions even exist, how can you ask them? If you don’t ask them, you may miss a critical piece of information that may have changed your decision to grant your consent.
Informed Consent fails.
True story: Patient had a cesarean section with her first child due to breech. Her OB casually mentioned “once a section, always a section” at her 6 week follow up. It was stated matter-of-factly and the patient nodded dutifully. Without context, it meant nothing. A new mother with a 6 week old infant is hardly thinking about her next baby!
The seed was planted. The “condition” didn’t even exist, but the biased statement had been made. Why? There wasn’t any discussion about future pregnancies. It wasn’t even on the radar and yet the suggestion was made.
In reality, “once a section, always a section” is NOT true. Not to get into a debate but the statement was absolute and obviously, there are options. Period. Full stop. If this statement had been said to someone who wouldn’t think to question it, question authority, or question the validity of the statement itself, they simply wouldn’t. They’d take it for face value and blindly follow that one, casual statement.
The patient would have the impression that they had given Informed Consent. In reality they had been given incomplete information. Active omissions eliminate the ability to give Informed Consent because the patient hasn’t been completely informed.
Another Mom once shared this incredibly powerful anagram with me. For that, I’ll be forever in her debt.
Use BRAN when evaluating ANY medical (or for that matter, life) decision.
B – Benefits. What are the benefits of what they’re suggesting?
R – Risks. What are the risks of what they’re suggesting?
A – Alternatives. What are the alternatives (other options) to what they’re suggesting?
N – Nothing. What happens if we do nothing?
Use BRAN when evaluating treatments, interventions, surgery or anything for that matter. It’s such a powerful tool, to help you slow down and ask the RIGHT questions, even when you don’t know what they are. BRAN will help you get there.
If you’re anything like me, you have lots of questions and concerns to ask about when you go to an appointment. Then you get INTO the appointment and promptly forget to ask them or what they were in the first place.
When tackling a serious illness, you need to document everything. The date and time that you spoke to medical offices, the dates and times they promised you’d hear from them, what your questions are and then to refer to those questions while you have their attention. Literally have your booklet and go down your list. Check them off as you go.
Set reminders so that you know when to follow up. You need to be as organized as you’d like your medical providers to be. At some point, someone will ask you “When did XYZ happen?” and you’ll need to be able to give them accurate information.
This is where things can get uncomfortable. Some people don't want to question authority. They feel that questioning authority may be disrespectful. They don't want to upset the doctor that is responsible for their care. What if the doctor takes it personally and drops them as a client? What if the doctor gives them substandard care out of retaliation?
The truth is that questioning authority is not disrespectful. You can ask questions regarding YOUR health. It is YOUR HEALTH! You don't have to be rude about it. Questions can be polite.
Those who bristle at being questioned need a reality check. You're not questioning their ability. You're requesting the best health care possible that is appropriate for you. In order to get that, you must have an active role.
Also note that if your doctor doesn’t welcome your questions, if you feel they’re being condescending to you or even bullying you – you need to find a new doctor. Your health is very personal. There are many issues that may happen with your body that may be embarrassing to you. You NEED to feel completely at ease with your doctor so that you can tell them anything. If your feelings about your doctor hinder your ability to share information with them, it is hindering your health.
Please ensure you are comfortable with your health care provider.
Health Care As A Business
Think like a business when it comes to your health care. You are the CEO. You are the most heavily involved, the biggest investor and will suffer the fall out if it isn’t successful. Failure isn’t an option. Opting out, is not an option. To not engage, to not evaluate, to not research and review is to fail yourself.
It’s not to say that your doctor isn’t invested. Most are! However in the face of failure, it’s you who pays the ultimate price.
In The Face Of Cuts
There are budget cuts which are impacting medical care. You may encounter health care professionals which are stressed, tired, distraught or a combination of all three. It’s not an excuse for poor service, but it is something you need to be aware of. If someone drops the ball, you will pay the price.
Again, be your own champion for your own cause; YOU!
I don’t subscribe to conspiracy theories. I don’t believe the medical profession is out to get everyone. I’ve met and feel truly blessed to have met and been under the care of some incredible people. I do feel that ultimately, the medical profession wants us all to be well.
That being said, I also truly believe that you must be an active participant in your health care. You are MORE than an equal partner. You must have an active role. In the end, doctors work for you. Hold them accountable!
Only you know if the treatment approach being taken is right for you. Be your own advocate. Ask questions, get answers. Hold people to the promises that they made to you and make them follow through.
Your life may depend on it.