Post by blackcrowheart on Nov 18, 2005 22:51:08 GMT -5
Surviving a broken medical system
www.indiancountry.com/content.cfm?id=1096411922
Last August I fell through the cracks of the American medical system, despite having excellent health insurance and an above-average need to express myself. I am writing about this now because I think you could pick up some good ideas from my experiences and spare yourself the mess I was sometimes in, and because I might help you find some of the joys I found even during a major, scary surgery.
I've tolerated doctors since January, when I was diagnosed with cancer in my right breast. For two months I was misdiagnosed by one doctor who told me that the problem was my failure to wash my bras often enough. I tolerated the scoldings of a surgeon who was mad that my supposed breast infection wasn't healing. Finally, I refused more antibiotics and forced him to do a biopsy.
I know cancer patients who were misdiagnosed by supposedly good doctors for as long as five years, only to find advanced cancers. Two months of misdiagnosis is comparative kids' play. Still, I fired my first doctors on the spot and moved to more enlightened ones.
I had not stayed overnight in a hospital since I was born, so I had a lot of fears about what was to happen. The idea of trusting an institution where I knew no one, and no one seemed to have time to show me around, was disquieting.
Even though the biopsy showed good news, that my lymph nodes were cancer-free, I didn't feel comfortable with the hospital.
On the Thursday before the Monday surgery, a brusque hospital nurse called me to run over the hospital procedures. I raised the concerns I had about food allergies, surgery and my experience with the radiation technicians. She was in a hurry and not interested.
The next day, my plastic surgeon (who was responsible for the reconstructive work after my mastectomy) drew lines across my entire chest and abdomen to guide his scalpel. I felt like I was on a conveyor belt to doom.
I was shifting into panic-attack mode. Sunday afternoon I called my surgeons' answering services, hoping for a reassuring call back, but my messages were slotted for delivery at 7 a.m. Monday - one hour after the surgery's scheduled start.
I was sure, admittedly irrationally, that I would die; so, further irrationally, I bought two flats of petunias and planted them in the dark.
Around 11 p.m. I went inside and started to write out my concerns. I wanted to know if doctors would use a catheter, or how that would make me feel. I explained that my name is pronounced ''Kara,'' like ''Sara.''
A call earlier in the evening to the nursing supervisor on duty gave me the hospital lingo, which is necessary to open doors. I asked to meet the ''patient advocate'' and get a ''dietary consultation.''
Still, I went to sleep worrying. At 5 a.m. when I left for the hospital, I carried my list, my manifesto of patient's rights. Once there, I refused anesthesia until someone addressed my concerns. I got all the way past the admissions clerk, the pre-surgery nurses and the orderlies with my paper clutched to my chest.
Finally, an anesthesiologist and a surgery nurse read the words.
The anesthesiologist blamed the answering services. They employ untrained staff at minimum wage, he said. The staff can only take simple messages, not the complex ones that a worried patient might leave. You must, he said, use the word ''emergency'' if you need a quick call back.
My surgeons arrived. They said I was too stressed to undergo surgery. That was true. We weren't, as the surgeon said, functioning as a team that day: also true. She called the hospital's patient advocate for me.
Later that week, I arranged for the advocate to take me on a tour of the places I'd go during my hospital stay. Not all hospitals have patient advocates, but most have someone -a nursing supervisor or a community relations specialist - who are charged with listening to patients' concerns.
He led me to the pre-surgery room where patients are given anesthesia. The patients I saw didn't look bad. Taking away the lens of my own stress, they seemed to me like people who were on their fifth drink at happy hour. I peered down the long hallway with surgical suites on either side. It was very clean. Staff smiled at me as they walked by.
I also made an appointment with a psychologist who specializes in the trauma that people with a cancer diagnosis go through. The medical system traumatizes us, she said. It dehumanizes us on one hand, yet tells us to heal.
It took a month to get my surgery rescheduled. One surgeon told me that the delay was good because the patient has to feel right about the work that's going to be done. The other surgeon was angry. She told me that I wasted the time of several doctors. I said that my time was important too, but then shut up and let her rant because she is one of the best breast surgeons in my city.
Everything was different when the surgery came around again. I felt at peace the day before. An older woman friend accompanied me this time into the pre-surgery room. She stayed with me until I was wheeled out, but I don't remember because I was drugged. She tells me that the surgeon's assistant brought R. Carlos Nakai CDs to play during my surgery. I'm told I said ''thank you.''
Last week, I told this story to some breast cancer survivor friends. One of them said afterwards that the medical system looks monolithic from the outside, but if we will say how we expect to be treated and what we need, more than likely we will get it. I haven't met a doctor, nurse or technician who didn't enter the medical profession intending to help people, even if the business of their profession sometimes obscures their intentions. The American medical system is broken, but if we speak up for ourselves people inside that system will respond with care.
Kara Briggs is a Yakama journalist from Portland, Ore., where she is currently on medical leave from her job at The Oregonian. She chronicles her battle with breast cancer in this biweekly series. She is a former president of the Native American Journalists Association and winner of the 2004 Richard LaCourse Award for Investigative Journalism. She is interested in the experiences of readers who have had cancer and also remedies, cultural practices or unusual treatments that have helped them. Contact her by
e-mail at k-briggs@earthlink.net.
www.indiancountry.com/content.cfm?id=1096411922
Last August I fell through the cracks of the American medical system, despite having excellent health insurance and an above-average need to express myself. I am writing about this now because I think you could pick up some good ideas from my experiences and spare yourself the mess I was sometimes in, and because I might help you find some of the joys I found even during a major, scary surgery.
I've tolerated doctors since January, when I was diagnosed with cancer in my right breast. For two months I was misdiagnosed by one doctor who told me that the problem was my failure to wash my bras often enough. I tolerated the scoldings of a surgeon who was mad that my supposed breast infection wasn't healing. Finally, I refused more antibiotics and forced him to do a biopsy.
I know cancer patients who were misdiagnosed by supposedly good doctors for as long as five years, only to find advanced cancers. Two months of misdiagnosis is comparative kids' play. Still, I fired my first doctors on the spot and moved to more enlightened ones.
I had not stayed overnight in a hospital since I was born, so I had a lot of fears about what was to happen. The idea of trusting an institution where I knew no one, and no one seemed to have time to show me around, was disquieting.
Even though the biopsy showed good news, that my lymph nodes were cancer-free, I didn't feel comfortable with the hospital.
On the Thursday before the Monday surgery, a brusque hospital nurse called me to run over the hospital procedures. I raised the concerns I had about food allergies, surgery and my experience with the radiation technicians. She was in a hurry and not interested.
The next day, my plastic surgeon (who was responsible for the reconstructive work after my mastectomy) drew lines across my entire chest and abdomen to guide his scalpel. I felt like I was on a conveyor belt to doom.
I was shifting into panic-attack mode. Sunday afternoon I called my surgeons' answering services, hoping for a reassuring call back, but my messages were slotted for delivery at 7 a.m. Monday - one hour after the surgery's scheduled start.
I was sure, admittedly irrationally, that I would die; so, further irrationally, I bought two flats of petunias and planted them in the dark.
Around 11 p.m. I went inside and started to write out my concerns. I wanted to know if doctors would use a catheter, or how that would make me feel. I explained that my name is pronounced ''Kara,'' like ''Sara.''
A call earlier in the evening to the nursing supervisor on duty gave me the hospital lingo, which is necessary to open doors. I asked to meet the ''patient advocate'' and get a ''dietary consultation.''
Still, I went to sleep worrying. At 5 a.m. when I left for the hospital, I carried my list, my manifesto of patient's rights. Once there, I refused anesthesia until someone addressed my concerns. I got all the way past the admissions clerk, the pre-surgery nurses and the orderlies with my paper clutched to my chest.
Finally, an anesthesiologist and a surgery nurse read the words.
The anesthesiologist blamed the answering services. They employ untrained staff at minimum wage, he said. The staff can only take simple messages, not the complex ones that a worried patient might leave. You must, he said, use the word ''emergency'' if you need a quick call back.
My surgeons arrived. They said I was too stressed to undergo surgery. That was true. We weren't, as the surgeon said, functioning as a team that day: also true. She called the hospital's patient advocate for me.
Later that week, I arranged for the advocate to take me on a tour of the places I'd go during my hospital stay. Not all hospitals have patient advocates, but most have someone -a nursing supervisor or a community relations specialist - who are charged with listening to patients' concerns.
He led me to the pre-surgery room where patients are given anesthesia. The patients I saw didn't look bad. Taking away the lens of my own stress, they seemed to me like people who were on their fifth drink at happy hour. I peered down the long hallway with surgical suites on either side. It was very clean. Staff smiled at me as they walked by.
I also made an appointment with a psychologist who specializes in the trauma that people with a cancer diagnosis go through. The medical system traumatizes us, she said. It dehumanizes us on one hand, yet tells us to heal.
It took a month to get my surgery rescheduled. One surgeon told me that the delay was good because the patient has to feel right about the work that's going to be done. The other surgeon was angry. She told me that I wasted the time of several doctors. I said that my time was important too, but then shut up and let her rant because she is one of the best breast surgeons in my city.
Everything was different when the surgery came around again. I felt at peace the day before. An older woman friend accompanied me this time into the pre-surgery room. She stayed with me until I was wheeled out, but I don't remember because I was drugged. She tells me that the surgeon's assistant brought R. Carlos Nakai CDs to play during my surgery. I'm told I said ''thank you.''
Last week, I told this story to some breast cancer survivor friends. One of them said afterwards that the medical system looks monolithic from the outside, but if we will say how we expect to be treated and what we need, more than likely we will get it. I haven't met a doctor, nurse or technician who didn't enter the medical profession intending to help people, even if the business of their profession sometimes obscures their intentions. The American medical system is broken, but if we speak up for ourselves people inside that system will respond with care.
Kara Briggs is a Yakama journalist from Portland, Ore., where she is currently on medical leave from her job at The Oregonian. She chronicles her battle with breast cancer in this biweekly series. She is a former president of the Native American Journalists Association and winner of the 2004 Richard LaCourse Award for Investigative Journalism. She is interested in the experiences of readers who have had cancer and also remedies, cultural practices or unusual treatments that have helped them. Contact her by
e-mail at k-briggs@earthlink.net.