A few questions for some medical care providers

[PuppyFluffer]

I have a history of bad medical experiences and I am interested in getting feedback from those who work in the medical field about how they would best like to work with a patient like me or interact with me as the mother of their patient.

A year ago, I was really caught in "the system" of a hospital in regards to care of my son who hit his head and was admitted for observation. (Investigation of potential intentional injury to child, forced to have a skeletal survey x ray series and truly knew if I refused, they would seek temporary custody to do what they wanted). I have not trusted the medical community since I was a victim of them as a sick small child myself. I have done well to be articulate and educated and ask appropriate questions and be polite and respectful, but in spite of that, the interactions I've had with medical staff have not gone well in my opinion. (I do have a very safe and trusted family practitioner and a chiropractor who I adore. The problems I am referring to are medical settings where I am a new patient and we don't have a relationship of trust.)

If you are in patient care and a patient has had bad experiences, do you want to know about their history? Would it help you to provide care to them to know this history? Would it make you think they were just nuts? or defensive and distrustful?

I don't wish to feel the way I currently do about the medical community but experiences with them have served to show me that my impression is valid and real. How do I help to have a better interaction?

[_ktg_]

I know you are looking for health care providers and I will say I am not an HCP, I just work at an academic hospital and medical college and therefore see these folks and work with them all day long.

I think you have to look at what are the situations you would be engaging with unknown (i.e. you don't have a careprovider history with) medical staff. Is it in the ER, urgent care, or a new HCP that you are looking to switch to?

I think with any interaction and perhaps during the h/p to just mention (especially if asking "odd" questions) you've had some not great experiences in the past with health care providers (give some examples, unnecessary testing, wrong dx or etc.) and to please bear with you as you ask questions to have a better understanding of situation so you can work with them.

Finally my last thought is (now in working with them so often) they are human, and if its the ER and last week they saw a similar skull fracture and thought - it just looks like a bump on the head when they fell and then lo found out the kid was being abused, they will not make the same mistake twice and will double/triple check just in case. Drs want to always do the right thing and keep people from harm (physically) I think often they fail on the "do no harm" emotionally when trying to uphold the physical aspect.

[gothnurse3]

I am no longer practicing as a nurse but I was a nurse for 17 years. The ER is rough...hands down. As a nurse you are over-worked. We are trained to report anything especially children and elderly. It is a very small window of time to help somebody that may be trapped in a situation that they are victims and helpless. The overly concerned parent is just as much a flag as the one who won't get off the cell phone. I know it's not really fair but I thought I'd offer some insight from the other side of the desk. I quit....burned out beyond repair.

Nobody is exempt. I brought my OWN child to the ER recently to be grilled about how he got the 2 inch laceration on the back of the head. They have known me for years. But, it was my husband and I together with a kid with a head wound. ( Caused by his sister...a bad mistake).

[PuppyFluffer]

I didn't walk into this hospital off the street. We were referred there after being seen at a very qualified smaller hopsital. That hospital had clearly stated to the new one that "The parents are reliable" and a second time "The parents are EXTREMELY reliable". I heard the entire phone conversation of our ER doc to the children's hospital.
I took the effort to get the complete medical records from the children's hospital. I took the rediology reports and CT scans from the children's hospital back to my local hospital and had them reviewed by a skilled radiologist. I did not know that this man has a speciality in neuroradiology - meaning he looks at a lot of heads. He reassured me that my child's injury was very very minor. He said that he used to be in acedemia but he got out "because I could not stomach the bullshit patients were being put through." He expressed nothing short of outrage that a radiologist made a supposition that he could have been leaking cerebral spinal fluid into the hematoma - a effect of massive head trauma and a totally impossible event with this injury. He was very reassuring to me that my instincts about the path the medical community took and their motivations were accurate. I asked him how I avoid getting caught in the system in the future and he couldn't answer me. I then asked him if I should have taken my child to be seen and he said "Yes, you did the right thing." I told him that I doubted that I would do it again and put my family integrity at risk again.

I would never deny my child medical care in the obvious need of it but I will be much more stringent in my evaluation of need in the future. Our son had a small soft swelling on his head. He was perfectly normal - perfectly normal! If I had never taken him to the doctor, nothing would be different except he'd be free of the radiation exposure of three head CT scans and over 24 xrays of his various body parts. I would be free of an experience which really tipped me over the edge of not being comfortable and trusting in medical settings to reallying loathing the medical community.

I've always been one to educate myself on my own care and empower myself to make educated medical decisions for myself. My experiences as a very sick kid being seen by lots of people, going through LOTS of medical tests....it's all helped to show me that the ONLY person responsible for my health is me. (I had a kidney infection which was finally properly diagnosed by a small town family doctor when my father got out of the military.)
I've exercised the same attitude with my kids - educate myself, research the standard protocols, understand why the medical community wants to do something and either accept or decline based upon my learnings.

I just want to be respected. When I decline something I don't wish to have unrealistic scare tactics thrown at me and the attitude that I have defied their God-like stature. (The reaction to me politely saying "I'd like to decline that" when told by a PA "We'll give her some Tylenol now to bring that fever down" was a visible stiffen and the exclamation "Well....she's at risk of febrile seizures and dehydration with a fever that high!" No interest or inquiry in why I declined, no questions to me about it at all. And seriously, 102.9....not in febrile seizure territory so stop with the lies please!)

How does one get respected by the medical community when you don't wish to bow and follow everything they say? How do you set the relationship back to it's proper balance? How do you get the medical establishment to recognize that they are paid consultants -nothing more nothing less. I am requesting their opinion but the final decision is mine to make. Is there anyone in the medical world that recognizes this?

[_ktg_]

Would you mind if I posed your question to some of my friends who are MDs? I would love to pick their minds as they are teachers at the college and I know its important to them to be able to work with parents/patients in a respectful way.

[PuppyFluffer]

ktg, I would love it if you posed my questions to them.
My experience last year has really effected me. It will forever shape the face of me seeking healthcare for my children - and not in a positive way.
There is so much I want to say about this experience but I don't want to open myself up that much on a public forum. I'd be happy to share more with you via private message.

[PuppyFluffer]

Gothnurse, I totally understand that NO ONE is exempt from being assessed for abuse. That is why, when I heard my ER doc say "The parents are reliable", I was actually comforted in knowing that they asked about that. You HAVE to consider it as a possibility! I totally understand that. What I don't understand is the next step - what criteria are used to screen OUT or IN an abuse case?

How do you define the overly concerned parent?