OK, so I exaggerated a little in the title, but I want to make a long-overdue point on here. Many of you have learned the hard way. Some of you may not have learned this yet, and in that case, you probably think I'm overreacting. I can assure you that the point I make is valid.
YOU are your best advocate. While there are people who advocate for the patients in a hospital, no one in that hospital has the sole responsibility of being YOUR advocate. I see people every day who are consenting to procedures, being prescribed medication, attending therapy, etc., who don't truly understand why they are doing what they are doing. I have even seen very bad examples of this. I have seen patients who consented to procedures only to regret that decision when they come out of surgery and realize the extent to which they've committed.
Hospitals are here to care for patients. They are here to make money while they care for patients. They are here to make more money than last year by caring for lots of patients. They are going to make mistakes at times and cut corners at times. You can't fix that. You can, however, do everything in your power to make sure that someone is fighting for YOU.
I'm not trying to "dog" the hospitals. A hospital pays my salary. I enjoy my job. Please do not misconstrue my comments. I simply urge YOU to fight for what's best for you. This means making sure you understand what the doctor diagnoses you with, what he/she proposes to do, and what that means for you (rehab time, deficits expected, cost, changes to your level of independence, how it affects the rest of your health/other diagnoses, etc.). Too few patients take the time to talk, and I mean truly converse, with their health care professionals. While the doctor is a busy man (or woman), YOU (and your insurance company) are paying him for a service. You wouldn't let the painter change paint colors without telling you why, would you? If the doctor honestly doesn't have time or can not explain it to you in a way you can understand, ask to have someone else come by (e.g., social worker, case management nurse, physical/occupational therapist, speech-language pathologist, etc.). If you have to play the bad guy, do so. I caution you to do so with respect and kindness (if possible), but do so.
[now leaving my podium and stepping off the soapbox]
Wishing You Peace
8 years ago
4 comments:
Rachel, your point is totally valid. When I had my stroke and was in the hospital for three months, my husband Matt was my ADVOCATE every day, minute to minute. My family that came down to Florida were my ADVOCATES the whole time they were there. I am very fortunate, to this day I am able to call my neurosugeon in Florida on his cell phone any time I want. I have his e-mail, he reads my blog, and he e-mails me and even signs off as Kirk. (I told him I still have to call him Dr. Jobe). But someday I will call him Kirk and I will feel really good about that. Your advise was expert. I did have to play the bad guy with my Neurological Opthomalogist this past April. He is at Brigham and Women's Hospital in Boston. He operated on my left eye to try to correct my double vision, and he made it worse. The last time I saw him, he said "Well, we can always pray for a miracle". I thanked him respectfully and have decided not to see him again. Hopefully my brain will heal my eye someday! I NEVER GIVE UP HOPE.
Your friend Lori
Couldn't agree more Rachel.
I decided right from the outset I wanted to be cared for by my Uk GP Practice (local doctors and specialist nurses) which was unheard of then.
I had to get very rebellious - grumpy was easy too :), and even then the hospital insisted I had to sign loads of 'it's not our fault if you die' forms.
Wouldn't recommend it for everyone, but it's the best thing I ever did. The Brit advice is F.A.S.T Facial Arms Speech Test (weakness all three). When I hit that, (and I do) I can be sorted out at home or a ten minute trip to the surgery. It isn't that the English stroke care is rubbish, it's improved a lot even recently.
It's just that with the initial care, they pull you away from home and family, plonk you miles away, and leave you very much in the dark about what's happening to you.
I DREAM of the kind of contact with a neurosurgeon that Lori describes.
ps The Wheelie has, with help, got his main computer working again. A few quirks to iron out, so if I disappear for a few days, I'm here and reading, just, errr.. de-quirking.
Bless you sis :)
Hi- I found your blog through suburb sanity and I think you have a very refreshing voice- I look forward to reading more of your posts!
P.S. I just want to mention that my uncle recently had a stroke and that I am alreday finding helpful information here. Thanks!!
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