As my Mom continues to suffer the side effects of a fluoroquinolone drug, I am more convinced than ever of the importance of patient advocates, especially for the elderly. Mom has Lymphoma, the bad kind, but her symptoms today - confusion, anxiety, and disorientation are not related to her underlying disease or her age. I know the symptoms all to well, the nasty side effects of fluoroquinolones, as I too was “floxed“.
Mom has always been independent and competent, making her own medical, financial, and life decisions. Today she is scared, needs someone to help her navigate through this broken medical system and make decisions for her. I can vividly remember feeling the same way when I was “floxed” years ago. Although it took me more than a year to recover, I had youth in my favor and was not suffering from cancer.
Yesterday was mom’s scheduled treatment day. The doctor decided she was too run down to risk receiving treatment. I keep wondering if it’s not the Avelox preventing her from receiving the treatment she needs. I can’t tell you how anxious I was to get at those doctors and hear their justification for prescribing a restricted, last-resort antibiotic, contraindicated for the elderly, and intended for treatment of confirmed bacterial infections that have not responded to other treatment. THIS is the drug they gave my mom for her cold symptoms.
The nurse chose to argue with me, but I would have none of it. I INSISTED that Mom’s records instruct that she is NEVER to be prescribed any fluoroquinolones. The nurse asked, “How about Cipro (another fluoroquinilone)?” I’m like, “What part of NO fluoroquinolones do you not understand!?” She continued to try and sell me on fluoroquinolones, when the doctor came in. Lucky for him, he agreed with me, and Mom’s records now show that she has an allergy to fluoroquinolones.
Patient advocacy has gone from being the frosting on the medical care cake to being a necessary ingredient in any recipe for medical care that does more harm than good. Patients have to be informed, but all the information in the world still doesn’t help if you (or your advocate) doesn’t have the tenacity to insist that your views, concerns, and wishes be acknowledged, with or without the MD behind your name. This is especially critical for the elderly, who often do not have the resilience to recover from medical mistakes or sloppy drug-pushing.
What has happened to our medical system? Once upon a time, there was a deep bond of trust between doctors and patients, back when we didn’t need to be a walking pharmaceutical encyclopedia to understand our medical care. What if we didn’t have the internet? Would we (the patients and patient advocates) be better or worse off? How do you think your doctor would answer that question? Are you willing to rely on information that you receive from your doctor, or do you feel the need to research and direct your own care?
Susan Beausang, 4Women.com
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Hi Susan - The Alliance for Advancing Non-Profit Healthcare puts the differences this way:
The overriding purpose of nonprofit health care organizations is to "do good" for the benefit of their communities. Unlike investor-owned organizations, which are economically driven and legally obligated to do well financially for their owners, with profits primary, nonprofit health care organizations are obligated along with government at all levels to meet society’s needs for medical education and research and to advocate for and meet the needs of the most vulnerable members of their communities. Profits of nonprofit health care organizations do not inure to the benefit of individuals and, while necessary over the long run, are secondary.
You can find more information here:
January 27, 2011 - 1:05pmhttp://www.nonprofithealthcare.org/
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Hi Pat,
I would love to hear more about the changes you've seen. We patients have of course experienced these changes as well, but without the understanding of what's shaping our care from the inside. For example, how hospital care changed when for-profit hospitals became the norm????
Ultimately, my mom's experience is not so different from my own, with respect to the fluoroquinolones. Even when my achilles tendon was splitting, my doctor wanted to denied that it was related to the antibiotic. What is frightening though is seeing someone as elderly, weak, and disoriented as my mom having to hand herself over to this type of system. I cannot tell you how relieved I am to be in the same town as her so that I can oversee all of her care.
Thanks for writing, Pat!
January 27, 2011 - 7:09amTake care,
Susan B.
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Hi Susan C.,
Thanks for the comments. I agree that most of us do know that blindly following doctors orders has led to worse, rather than better, outcomes for some patients. I don't know though if that awareness always translates into proactive patients. Not everyone is able to conduct their own research, for a myriad of reasons. And even when we do conduct our own research and arrive as informed as we can at the doctor's offices, many doctors and other medical professionals have a way of dismissing us with the assumption that we cannot really understand our health with out an MD. Even the best informed of us often leave second-guessing our understanding.
Even among the younger generation, I have a daughter-in-law, very intelligent and well-educated. She is due to give birth this week. She often comments that she could not imagine going to all the trouble I go through to research and understand my or my mother's medical care. With respect to her own birth, her OB has given her a strict date by which she needs to give birth or he'll schedule a c-section. And she is just fine with this, having absolute faith in her OB's counsel, regardless of whether or not his counsel is based largely on his own convenience.
I would also point out that in many cases, our medical specialists have traded in extreme specialization for broader understandings of our bodies and physiology.
Thanks for writing!
January 27, 2011 - 7:05amSusan
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Susan B - Excellent observations. I've worked in healthcare many years. I can remember when the focus was on patients first. I also remember the introduction of for-profit hospital systems, "managed" care, and other changes that put the priority on profits. People today, with any diagnosis, are shocked by how much they have to do themselves and how much they need to advocate for good care. Some of that shock is due to taking a lot of things for granted and not having a true understanding of how the system works and their own role in it. It's past time for having open, honest and realistic discussions in the United States about what we all need to do to have a system that provides better care at lower cost. Otherwise people like your mom, and countless others, will continue to have these experiences. I'm glad you're there for her.
January 26, 2011 - 6:06pmTake care,
Pat
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