In talking to someone today, we discussed the issue of questioning doctors. This individual works in the hospital, and she relayed her own experiences of taking everything that doctors say as Gospel. She says that since she started working in a hospital, she has learned that sometimes doctors do not know everything.
I used to accept doctors at their word. If a doctor told me that a certain procedure had to be done or medication taken, I accepted it. I asked questions so I knew what I was facing, and I might have researched the procedure or medication and possible alternatives, but in the end, I always accepted the doctor's recommendation. After all, I chose the doctor, so I should trust him, right? Not necessarily.
Personally, I feel that when a family member or patient questions a doctor, it is not an attack on that doctor, even though some of them think it is. Doctors need to realize that most of this is foreign to us, and only by asking questions, a lot of questions, do we familiarize ourselves with this strange, unknown world, and it helps us to accept this new normal.
Also, I think it helps the doctors see the bigger picture, to think about an avenue they might not have otherwise seen (i.e. diet v. pill), and it keeps them on their toes.
Doctors have many patients....you only have one. Doctors have to keep track of the histories, procedures, labs, tests, medications, etc. for 10, 20, 30, or more patients. You have one. Yes, they have notes, and yes, they have the chart, but Derek has been at this hospital for 111 days today. That is some chart. It would be near impossible for a doctor to keep track of the entire history. This is where we come in.
Doctors are human and they make mistakes. An aware patient who is inquisitive about the procedure or medication, its risks, its benefits, its possible side effects, can be an asset to the doctor, and it might save a life. Researching options, and then not being afraid to suggest an alternative makes you an active participant in your health care.
Now in this situation, I did not chose any of these doctors... well, almost - I did request Dr. Diego as Dr. B's replacement based on the wonderful things I heard about him. Other than that, the initial selection of doctors was made before Derek arrived, and then different teams were assigned as needed and we did not know anything about these new doctors, or have any say in their selection. Only when problems arose was I able to voice an opinion about a particular provider, and that has happened so rarely.
Since our arrival, only by talking to these wonderful doctors and asking them questions was I able to get to know them, their expertise, and their experience and to become comfortable with them making life and death decisions for someone I hold dear. I would do no less if I was selecting a dermatologist for one of the my children.
At this point, if someone were to spread all the doctors out in front of me, knowing what I know now, and hearing from other families about their experiences with the same and different doctors, I would chose the same team. Although, I still do not like this nonsense of switching residents every two months! Oh the joys of a teaching hospital. It can be wonderful because you have a fresh set of doctors, all trying to prove themselves so they are trying their best, but it can be scary because it is a new doctor who is unfamiliar with you and has never laid hands on you. Every patient is different. Thank God, all three residents we have had have been awesome (although I won't tell Dr. Diego until Derek is an outpatient).
However, even though I trust Derek's team, I still question them. I am not trying to make their jobs harder, and I am not trying to be a pest or difficult, but I have been an active participant in this battle since the beginning. If I didn't ask questions, make suggestions based on my experience as Derek's mother and since arrival, and take an active role, I would feel like I was doing Derek a disservice.
Thank God, most of the doctors have respected me enough to talk to me, and Dr. Diego even called to speak to me about Derek's progress from home tonight because he didn't get a chance to check in before he left. That's dedication. Either that or he was sucking up and hoping for those Jersey bagels I promised on Thanksgiving. ;-)
Even though Derek is awake, aware and an active participant in his health care at this point, he has not objected to my involvement and has even sought it. Questions have come up about history, such as when the TPN was stopped or when the trach was removed. I've got those dates written down. If someone asked Derek to list all of the medications that he has been on, he couldn't do it. I can. When a doctor suggests a new medication, Derek might not remember whether he had it before, but I do.
Everyone should have someone who has his back in these situations. Having someone's back means keeping a history, asking questions and not being afraid to speak up. The best doctors will welcome your input and participation, but remember to do it with respect and not as an attack. Sometimes, I have to remind myself not to snap and jump on the doc when it is an especially bad day. There is a right way and a wrong way to discuss things, and I know the stress gets to me and I do not always do it the right way.
I also believe that by having someone there who is actively involved, the patient can concentrate on the most important thing --- getting better. Various doctors will come in looking for information, even if it is as simple as how the day progressed, and I have it readily available. This allows Derek to stay asleep or keep eating while I answer the questions. He does not need to stress himself by remembering everything.
At this point, Derek makes the decisions, I fight the battles and handle the doctors, and Krystina concentrates on helping him by ordering his meals, handing him things, assisting him, and making sure that his basic needs are met. We make quite a team. I wish all the wounded warriors had their own team.
Bottom line, is it right to question the doctors? I would say, "Yes," as long as you make yourself part of the team and not an impediment to the treatment.
Derek had a sleepy day today. It could be this ileus working its way out from the set back last week, or it could be because they changed his pain medication. Our goal is to get him off the PCA (his Wilson, he calls it) so he can get a pass for Thanksgiving. Whatever it was, we spent the day "vegging" in his room.
Yesterday, we had some excitement. First, we were visited by Montel Williams. He is coming back sometime in the next couple of weeks to cook a meal at the Fisher House for all of the families. Montel is very involved with the wounded warriors and the Fisher House, a wonderful organization and where Krystina and I are currently staying. Montel was open and honest about his MS, and he talked to Derek frankly about the effects associated with his MS. He reminded Derek not to be afraid of asking for help if he needs it.
We were also visited by Kid Rock. He was cool. He chatted with Derek for a while about his experiences.
The visit that stretched my heart was Sgt Wiger, one of the angels who was on Derek within seconds and saved his life. Doc Stowers, Sgt Wiger and Sgt Love rendered first aid while LT Mike called for the bird. If not for these wonderful men, we would not be here today. Derek would be in a cemetery and Krystina and I, along with the rest of Derek's family would be trying to go on without him.
Heading into the weekend, our goal is to continue to help Derek get stronger, get him to PT tomorrow because he was too sleepy today, and maybe get him to the PM&R team on Monday.