Being an Advocate in the Medical World: Learning How to Listen, Ask Questions, THEN Make Decisions
What is the parents’ role in the medical field? What is the parents’ role when they are in the ICU, their child is on death’s door, and the medical profession has now “taken charge” in a sense? Have you now lost control over your child? Do you even have a role?
Advocating takes Dedication, Patience, and Work
This concept of advocating takes practice and it takes discipline. You are not an amazing advocate JUST because you’re a parent – you need to do the work. It requires trying to be objective under emotional circumstances. Knowing how to listen, take notes, and then make decisions.
Side note: don’t let someone be an advocate alone. If you’re a dad, be an advocate. If you’re a mom, be an advocate. You both are needed, you both are necessary. If that’s not possible, find someone else that can take a place – advocacy shouldn’t have to be done alone. So if you know of someone that is fighting by themselves, learn how to advocate with them. It is a joy, but you have to be active to be a good advocate – there’s simply no other way.
Learning How to Gather Information
An easy way to look at one of the biggest parts of your role is this: Your job is to gather information, weigh it, and make a decision based on it.
Typically you’re in a situation where you have five, six, or seven people telling you information all at once, from different angles. Then you have your own thoughts and opinions. It is information overload. You hear from the nurse, the respiratory therapist, the doctor – the doctor that you’re not sure if it’s a fellow, resident, or attending, and what do those mean anyway?? You’re not sure who has authority to say what, and you take everything at face value – this person can make a huge difference in the care of my child, and that terrifies me. You feel helpless, in a sense.
Yet, again, you are the one who makes the decisions. You have to gather all of this information, organize it, and make an objective decision based on it. Yes, you trust the doctors! But they cannot make decisions without your help – you are this child’s parent. Doctors can’t always take the time to explain every facet of information, or make complex information extremely basic for our understanding. Their area of expertise is different from ours. We need each other to save our child.
Deciphering Our Doctor’s Words with Objectivity
Typically, if medical professionals come with information and a possible decision, we get defensive – “you think you know what’s best??” Instead of taking the information objectively, taking notes, and making a decision based on all of the different sources. This could be the deciding factor for your child – and your emotions and listening skill plays a huge part. Sometimes, simply put, doctors can be confusing. That’s not their fault – that’s a very, very difficult job they’ve been given. How about we learn to help, instead of hurt?
Let me show you.
Real Life Example: Will my baby talk?
Three years ago, my daughter almost died 3 times. It was the worst part of my life to this date. Then, the biggest decision of our life had to be made: do we do a tracheotomy, or do we sign a Do Not Resuscitate order? I can’t explain how this feels – you feel as though you’re incapable of making a decision – but you’re forced to make the hardest decision of your life.
This decision was huge. The most important thing to me was trying to understand what would happen if we decided one way or another. A big portion of that was having to do with the trach – would it hurt? Can she talk?
Can she talk – this question got so many answers. Here are a few.
| Respiratory therapist | “I know plenty of people who can! I would never choose the DNR over a trach – I wish every child had one!” |
| Nurse | “Yeah, I really don’t know – I haven’t really heard my patients with a trach talk. But of course they’re typically intubated” |
| ENT | “The trach will not affect their vocal chords unless of course something goes wrong during surgery, which is very rare. Her voice may sound a little different, though. It’ll take time, but she will talk.” |
| Speech therapist | “There’s something called a speaking valve – they use it to talk! But I know people who can talk without it” |
| Mom of trached child | “I didn’t hear my child make a noise for two years, and even then it was only every once and a while” |
| Attending | “It just depends on the child and how they react to the trach.” |
Collecting Information to Help an Objective Decision Be Made
What in the world do you do with so many answers? How can you figure out what is the “correct” one, if there is? In order to get the answer, you need to combine ALL of the different answers.
A child’s actual vocal chords will not be affected (ENT), but they will need another device, the PMV valve (speaking valve) to talk (speech therapist). It takes endurance and strength, and it also depends on the anatomy of your child’s trachea and vocal chords (attending, ENT). However, as the child gets used to the trach – it takes time (mom) – you most likely will begin hearing their voice with help (speech therapist). A trach doesn’t steal your child’s voice forever, and to me it’s worth it (respiratory therapist).
This is the point: you need all of the advice, and you can’t take one answer and go with it. You need to get used to taking notes, asking follow ups, and knowing the expertise of each person. The mom will give you experience. The ENT will give anatomy. The attending may give you this big answer with no specifics. The RT will be very passionate, most likely, for a trach since it’s saved so many of their patients’ lives. You, the mom, just want one answer – so listen to all of these amazing peoples knowledge, and be an advocate.
Asking Follow Up Questions
I would also begin asking follow up questions. A big picture questions may help. It’s a question that no longer involves your child, if you’re in the heat of the moment, and can help a lot.
For me, it’s this question: How do “normal” people talk?
We exhale past the vocal chords, and the air hitting the chords creates the note that then comes out of our mouth. It’s like a piano – imagine your finger = your exhale. If the finger grazes the keyboard (the vocal chords), it won’t really do anything. That’s what a trach does. If the finger hits a certain portion of the key (leakage around the trach) you’ll get a bigger sound. If the entire finger hits the keyboard (a PMV, speaking valve) you will get noise – it’ll be bigger, and the pressure will even be more if you’re slamming it (that’s what the PMV sounds like).
It’s Worth It
This is an example of what my husband and I did in the ICU – we had a shared note and we each wrote our thoughts, doctors advice, and questions. It helped us stay on the same page and show our thoughts to one another, and also be objective.
Do these two simple things – gather the information, take notes, ask follow up questions, then make a decision. Get used to being a student and a teacher both at the time. Get used to being the listener, then the thinker. Embrace your role. This small act of listening and notetaking could help you be the best advocate for your child. It may even help save their life.
