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Wow – I read the whole wonderful, moving, exceptionally moving speech of Dr Berwick’s. I pray that with that address – he changed a lot of ‘Doctors’ in that short space of time. I know that without question that Jessica will be the sort of doctor we would all like to have.
As a Registered Nurse I have seen and worked with doctors of all kinds and in all specialities – yet over the past 26 years – the good doctors are few and the great doctors even rarer. As a patient and a patient with RA – they seem even rarer still.
As a young student nurse – I got in trouble with a few doctors for speaking out when I did not agree with their treatment of their patients. I made a lot of mistakes myself too in the early days as an RN in particular.
In later years, as a senior manager, whilst far from perfect, I could rest my head on my pillow at night knowing that the people in my care and the people who worked for me trusted me and knew that they were each important to me. In fact – this caused some significant issues with my ‘bosses’ who disagreed with me – because I wasn’t an autocrat and residents and staff were comfortable with me.
Now as an person with RA – I seem to have lost a lot of my confidence and less likely to speak out for myself.
Thank you for sharing this remarkable address with us. It is so moving – yet inspires me beyond words
Isn’t it amazing. I wish every current doctor would hear it, but it might do more good on young ears. I’ve decided to reread this again to let it work on my mind. Along with the e-patient book, I think it could help me set my mental compass about the way it “should” be.
Yes, I don’t know what it is about RA that can be so humiliating sometimes when it’s necessary to speak up for ourselves – Maybe it comes from things that need to be addressed and they are not really “visibly” obvious? Or the reactions we have gotten to it?
It really is amazing. I agree that (and sincerely hope) that the younger ones are more open. I have to say that this part of me is another adjustment I’m making (and not necessarily very well at this stage either).
I will email you one day re an old issue/illness I had when I was younger. I don’t know if back then, being younger I was more outspoken, or whether it’s being older or RA and people’s reactions – I think maybe it’s both. But I also know that I’ve always been a better advocate for others than myself!
I know I’ve changed since my diagnosis. It seems for me that the longer I’ve had this illness, the quieter I get. Your reply has made me think more about why (which is great)and it’s definitely part of my own adjustment and of course understanding. It’s also about vulnerability – it’s like (for me) when people share a part of themselves it somehow feels safer to do the same. With many fellow warriors the more I read and share, the more comfortable I feel.
Also – a big part of that is knowing that you are ‘moderating’ every comment. You have a remarkable strength and such kindness. If you weren’t who you are, and didn’t portray that kindness and concern people wouldn’t share their stories.
The fact though that we all have, or are closely touched by RA is sad (it’s so much more than that but I don’t know the right word).
I really do get that we only learn through adversity. This illness whilst so debilitating, ironically brings us together and I can’t believe for a second that it doesn’t increase our capacity for compassion, empathy and understanding. I just pray that it will at some point filter through the entire medical community. You have already made such progress in this area.
Thank you for everything and I’m praying that you have some relief with the Actemra. :hugleft: :hugright:
Just read the whole thing – what an AMAZING physician (as opposed to “doctor”) he is! As a maternity nurse and nurse-midwife, I worked to include husbands and other family members as desired in the entire maternity experience. Dads were there when the baby was conceived and should be there when the baby is born (if that’s what they want). Choice – always choice! I have been insistent that my husband come into every MD appointment I have when he comes to them with me. And I have been just as insistent that I be with him at his appointments. We know what we want at end of life – just as we knew what we wanted when me married – to be together. We included the children in as many things as they and we were comfortable with, and want them and the grandchildren included in our end-of-life. I will fight tooth and toenail for that! Fortunately, I have been careful to choose our physicians – they have to have a family-centered attitude. And they have to let us call them by their first names. We are, in essence, taking them into our extended family – we should be part of theirs, as should every one of their patients. If this makes them uncomfortable, we’ll find someone else.
As far as feeling vulnerable, I have never feared receiving poorer treatment in return for being insistent upon and an advocate for family-centered care in every specialty. If I think either of us is being retaliated against, I find another physician and let the first one know why we have made the decision we have made. One doc told me it had never occurred to include family members in the examining room until he met us. So we have made a little bit of an inroad!
It’s the office workers that were the hardest to deal with. But when I have encountered problems with them, I try to remember that they are under stress, too. I ask them if they are having a bad day, schmooze with them a little, and try to jolly them on a bit. If that doesn’t turn them around, I discuss our desires and needs, try to show them how it can work and still not interfere (too much) with their flow. Then, if that still doesn’t work, I talk with the doc and in no uncertain terms let him know that it’s our way or the highway. We’ll accommodate to his office routine as best as possible, but we insist on a family-centered attitude. As the team-leader, the doc is the one who can make it happen. If s/he will.
My Rheum is fabulous – in addition to being as cutting edge as a private practitioner can be (not an academic). He enjoys talking to my husband and loves for me to show him a new task that Emmy can do each time we go in. The same for our PCP. But I have picked and chosen, interviewed and screened, and gone through about 6 PCPs, 3 Cardiologists and 3 Rheums before finding the ones who combine a kindly, family-centered attitude and practice along with cutting-edge medical and scientific knowledge.
In this current age, we can’t let our sense of vulnerability or our fears dictate a “retiring” attitude. We must make ourselves insist on both excellent AND kindly, family-centered, patient-oriented care from our docs and their office staff. If they can’t do it, they shouldn’t be in clinical medicine! Maybe they should go into academic medicine. And the office staff perhaps should go into clerical activities that don’t require meeting the public! I’m SERIOUS!
Keep up the good work, Kelly! I’m loving what I’m seeing here!
Cheerio!
Elizabeth
Wow, that was beautiful! It wasn’t long ago that I saw a video on youtube (sorry, all my bookmarks were lost not long ago, and I don’t remember the doctor’s name) of a doctor who was talking about involving patients in their own care. To me, it seems that would be a big, well, yeah, DUH! but, as I have seen while taking care of my mother, doctors don’t really consider that option. I can’t tell you how many times I’ve told a doctor that, no, we will not be doing invasive tests on my mother, that we are practicing palliative care with her. They don’t seem to know what the word “palliative” means, or prefer to ignore it. They don’t seem to understand what dignity means, either, at least as far as their patients are concerned.
Anyway, I think that speech should be required reading for all medical students. 🙂