I’m by no means a lawyer and this book certainly cannot be considered the bible of legal medical advice. Rather, these are the things I’ve experienced throughout my life that I feel all patients need to be aware of. Parents and patients need to know their rights and not be afraid to properly exercise them.
First, you have the right to be seen and treated by a doctor you can trust. I have been blessed with the same Sickle Cell doctor for the past twenty-five years. He’s a gentle, kind, and caring man by the name of Dr. Antranik A. Bedros MD. Through his extensive knowledge of Sickle Cell Disease and how it uniquely affects me, he has been instrumental in preserving my life.
Dr. Bedros always made sure my parents and I understood why he was recommending a procedure or treatment. He made certain we understood everything correctly and the risks involved, if any. He also kept us informed about the latest treatments. If by chance Dr. Bedros didn’t have a solution to one of my medical problems, he researched it, and consulted with other doctors throughout the country.
When choosing your doctors, remember you are putting your life in their hands. The doctor you choose, in all reality, could be the difference between life and death, or hope and despair.
I once read a heart-breaking account on a Sickle Cell forum from a young man. Every time he went to see his doctor, the physician and his nurses treated him as though it was going to be their last time seeing him alive. The doctor and his staff believed this young man should go home and prepare for death because, in their opinion, he “didn’t have much time left.” This was his experience for many, many, many years.
Not only was I terribly saddened for this individual, but I was horrified by the story. I couldn’t conceive how a doctor could break the oath “to do no harm” in such a manner. No patient should have to leave his/her doctor’s office in a state of despair. There is always hope, and it’s a doctor’s job to help instill that glimmer of hope in you.
If you feel your doctor is doing more harm than good, either to your mind or your body, if you think he/she doesn’t have a proper understanding of Sickle Cell or there are other issues that make you distrust your doctor’s judgment, know you have the right to find a doctor you can have confidence in.
Showing posts with label 04) Know Your Rights. Show all posts
Showing posts with label 04) Know Your Rights. Show all posts
Friday, December 7, 2012
Right to a Second Opinion
As I already mentioned, when I was nine years old I had a severe stroke. I was extremely blessed to have made a full recovery from that horrid event. While recuperating, just before I was released from the hospital, my parents were approached by my then new physician, Dr. Bedros. To prevent another stroke from occurring he advised my parents that I should begin blood transfusion therapy. In 1982 this was a new form of treatment in Sickle Cell healthcare. My parents had their concerns and desired a second opinion.
They met with a different doctor at another major hospital. This doctor told my parents she didn’t believe blood transfusion therapy was a treatment that would help prevent a second stroke from occurring. She advised my parents to take me home and wait for me to have another stroke. In her opinion, a second stroke was unavoidable and certain. Needless to say, my parents weren’t going to do that. After much consideration, I began receiving monthly blood transfusions—or “oil changes” as we liked to call them—and I continued receiving them for seven years. I’ve been fortunate to avoid any additional strokes.
I share this with you to show how useful it can be to seek other professional opinions when making major medical decisions. One doctor may be of a certain opinion about your healthcare while another could feel very differently. Carefully consider all the options available to you and weigh the good with the bad. Do your best to be as informed as possible and choose wisely which doctor to put your trust in.
They met with a different doctor at another major hospital. This doctor told my parents she didn’t believe blood transfusion therapy was a treatment that would help prevent a second stroke from occurring. She advised my parents to take me home and wait for me to have another stroke. In her opinion, a second stroke was unavoidable and certain. Needless to say, my parents weren’t going to do that. After much consideration, I began receiving monthly blood transfusions—or “oil changes” as we liked to call them—and I continued receiving them for seven years. I’ve been fortunate to avoid any additional strokes.
I share this with you to show how useful it can be to seek other professional opinions when making major medical decisions. One doctor may be of a certain opinion about your healthcare while another could feel very differently. Carefully consider all the options available to you and weigh the good with the bad. Do your best to be as informed as possible and choose wisely which doctor to put your trust in.
Right to Refuse Treatments
When you become an adult, you will be responsible for your own care and will have the right to refuse any form of medical treatment you don’t want to have. You will also have the right to refuse being seen by a doctor or nurse you may have issues with. This means, if your doctor wants to try a new brain-transplant procedure on you, it’s your right to say no. Though I’ve never had to refuse brain transplantation—which, now that I think of it, could be a nice way of curing Sickle Cell Disease—I have had to refuse medical procedures and reject treatment from certain doctors.
I began going to a pain clinic in my mid-twenties. In the beginning, I kept butting heads with the doctor that was treating me. I’ll call her Dr. Nutzo. She insisted that I be admitted to the hospital every time I suffered a Sickle Cell pain crisis. This was a ridiculous statement that Dr. Bedros thought to be equally absurd. “If I were hospitalized every time I had a pain crisis, I would live in the hospital,” I exclaimed to her.
Upon my second visit with Dr. Nutzo, she persisted in telling me I had to be admitted to the hospital every time I suffer a pain crisis. It became very clear to me how truly ignorant she was about the nature of Sickle Cell Disease and how to best treat it. By the end of the second visit to the pain clinic I told Dr. Nutzo, “I refuse to be treated by you.” Actually, I had to tell her over and over and over again until she left the room and brought in another doctor. He was a physician whose judgment I eventually trusted and remained his patient for several years.
During one of my hospitalizations in my twenties, I was admitted with various symptoms. The doctor on duty that night was adamant that I needed a spinal tap to rule out Spinal Meningitis. I knew I sometimes showed the symptoms of this very serious illness and I refused the spinal tap at that time. I told the doctor, “If Dr. Bedros says I need a spinal tap, then I’ll do it, but not without his recommendation.”
Dr. Bedros wasn’t on call that night and it meant waiting until morning to see if he agreed with her assessment. Again I had to forcefully refuse this treatment despite the scare tactics used by this young doctor. Needless to say, I waited despite her protest. In the morning when Dr. Bedros made his rounds, he reassured me that I did not need a spinal tap. I thought it humorous that I never again saw that young doctor during my weeklong hospitalization.
I share these two events with you to illustrate how necessary it is to stand up for yourself. Learn to do what is best for you. You can’t afford to be passive about your healthcare and allow doctors, nurses, or phlebotomists (those who take your blood) do whatever they please to your body whenever they want. You aren’t a lab rat to be experimented on. Know when to exercise faith in your medical professionals and when to resist their ignorance, over-eagerness, poor judgment, or arrogance.
If you are currently a minor, you can help your parents by being open with your thoughts and feelings. Talk with your parents and tell them what you do and don’t want done in your healthcare. Together, as a family, you can decide what’s right for you.
I began going to a pain clinic in my mid-twenties. In the beginning, I kept butting heads with the doctor that was treating me. I’ll call her Dr. Nutzo. She insisted that I be admitted to the hospital every time I suffered a Sickle Cell pain crisis. This was a ridiculous statement that Dr. Bedros thought to be equally absurd. “If I were hospitalized every time I had a pain crisis, I would live in the hospital,” I exclaimed to her.
Upon my second visit with Dr. Nutzo, she persisted in telling me I had to be admitted to the hospital every time I suffer a pain crisis. It became very clear to me how truly ignorant she was about the nature of Sickle Cell Disease and how to best treat it. By the end of the second visit to the pain clinic I told Dr. Nutzo, “I refuse to be treated by you.” Actually, I had to tell her over and over and over again until she left the room and brought in another doctor. He was a physician whose judgment I eventually trusted and remained his patient for several years.
During one of my hospitalizations in my twenties, I was admitted with various symptoms. The doctor on duty that night was adamant that I needed a spinal tap to rule out Spinal Meningitis. I knew I sometimes showed the symptoms of this very serious illness and I refused the spinal tap at that time. I told the doctor, “If Dr. Bedros says I need a spinal tap, then I’ll do it, but not without his recommendation.”
Dr. Bedros wasn’t on call that night and it meant waiting until morning to see if he agreed with her assessment. Again I had to forcefully refuse this treatment despite the scare tactics used by this young doctor. Needless to say, I waited despite her protest. In the morning when Dr. Bedros made his rounds, he reassured me that I did not need a spinal tap. I thought it humorous that I never again saw that young doctor during my weeklong hospitalization.
I share these two events with you to illustrate how necessary it is to stand up for yourself. Learn to do what is best for you. You can’t afford to be passive about your healthcare and allow doctors, nurses, or phlebotomists (those who take your blood) do whatever they please to your body whenever they want. You aren’t a lab rat to be experimented on. Know when to exercise faith in your medical professionals and when to resist their ignorance, over-eagerness, poor judgment, or arrogance.
If you are currently a minor, you can help your parents by being open with your thoughts and feelings. Talk with your parents and tell them what you do and don’t want done in your healthcare. Together, as a family, you can decide what’s right for you.
Right To Ask Questions and Get Your Questions Answered
You have the right to ask your doctors and nurses all the questions you want and need in order to fully understand everything about your care. Questions like:
➢ Why are we trying this treatment?
➢ How is it going to help me?
➢ What are the risks involved?
➢ What happens to my health if I refuse this treatment?
➢ What is the recovery time?
➢ Are there any side effects?
My experience has been that most doctors like to make sure their patients understand everything that was discussed in the visit. They’ll spend whatever time is necessary to make sure this occurs. Some doctors, however, because they have fifty other patients to see or are simply impatient, tend to rush things. They may not take the time they should with their patients. So what do you do if your physician is Dr. In A. Rush? You make him spend time with you.
If it looks like your doctor is in a hurry to get you in and out of his office, quickly say, “Wait, I still have questions,” and start asking them. Tell him/her, “I don’t quite understand this,” or “I need you to explain that to me again.” There’s no shame in doing this. Don’t be embarrassed. Don’t be timid. It’s your appointment. Your health and life are on the line. Make sure you get your questions and concerns resolved. If nothing else works you could always chain him to the examination table until he answers your questions. But I would use that as a last resort; it might be hard to get a return appointment.
To make certain I fully understand what my doctor has told me, I always explain everything back to him in my own words. This validates to him I understood what was said. It also reassures me that I comprehended everything discussed; it also helps me remember what we talked about.
➢ Why are we trying this treatment?
➢ How is it going to help me?
➢ What are the risks involved?
➢ What happens to my health if I refuse this treatment?
➢ What is the recovery time?
➢ Are there any side effects?
My experience has been that most doctors like to make sure their patients understand everything that was discussed in the visit. They’ll spend whatever time is necessary to make sure this occurs. Some doctors, however, because they have fifty other patients to see or are simply impatient, tend to rush things. They may not take the time they should with their patients. So what do you do if your physician is Dr. In A. Rush? You make him spend time with you.
If it looks like your doctor is in a hurry to get you in and out of his office, quickly say, “Wait, I still have questions,” and start asking them. Tell him/her, “I don’t quite understand this,” or “I need you to explain that to me again.” There’s no shame in doing this. Don’t be embarrassed. Don’t be timid. It’s your appointment. Your health and life are on the line. Make sure you get your questions and concerns resolved. If nothing else works you could always chain him to the examination table until he answers your questions. But I would use that as a last resort; it might be hard to get a return appointment.
To make certain I fully understand what my doctor has told me, I always explain everything back to him in my own words. This validates to him I understood what was said. It also reassures me that I comprehended everything discussed; it also helps me remember what we talked about.
Wednesday, May 11, 2011
Right to be Treated Fairly, Respectfully and Equally
We are blessed to live in an age where patients have all sorts of rights. In addition to the others I’ve discussed, the right to be treated with fairness and equality are among them.
Let’s face it, your loved ones can’t always be with you in the hospital. As you grow older it probably isn’t as necessary as it once was to have your parents always at your bedside. Occasionally, you may encounter a medical professional that behaves one way when your parents are present and another way when they aren’t. If you find you are not being dealt with respectfully, don’t hesitate to tell your parents, guardians or somebody in charge.
This happened to me on occasion when I was young. There where times when a certain nurse or phlebotomist routinely behaved unprofessionally when working with me. Some of these people were unskilled at their job and had an unpleasant attitude to go along with it. At first I was hesitant to say anything because I liked to avoid conflict and didn’t want to get anybody in trouble—I grew out of that.
Eventually I learned how important it was to inform my parents. I discovered if I didn’t speak up, the problem wouldn’t go away. Instead it only grew worse. If something like this happens to you, do yourself a favor and tell your parents. Maybe the person taking your blood was being disrespectful toward you; perhaps a neglectful nurse needs a good talking to by their boss; or maybe you were acting out and had it coming. Whatever the cause is of mistreatment, your family needs and wants to know. You don’t have to put up with ill-treatment or neglect.
Just understand, regardless of your age, despite the illness you have, or what color your skin is, you have the right to be treated with the same respect as any other patient. Remember, if you aren’t able to stand up against the injustices that may occur against you, help those who love and care for you so they can.
Let’s face it, your loved ones can’t always be with you in the hospital. As you grow older it probably isn’t as necessary as it once was to have your parents always at your bedside. Occasionally, you may encounter a medical professional that behaves one way when your parents are present and another way when they aren’t. If you find you are not being dealt with respectfully, don’t hesitate to tell your parents, guardians or somebody in charge.
This happened to me on occasion when I was young. There where times when a certain nurse or phlebotomist routinely behaved unprofessionally when working with me. Some of these people were unskilled at their job and had an unpleasant attitude to go along with it. At first I was hesitant to say anything because I liked to avoid conflict and didn’t want to get anybody in trouble—I grew out of that.
Eventually I learned how important it was to inform my parents. I discovered if I didn’t speak up, the problem wouldn’t go away. Instead it only grew worse. If something like this happens to you, do yourself a favor and tell your parents. Maybe the person taking your blood was being disrespectful toward you; perhaps a neglectful nurse needs a good talking to by their boss; or maybe you were acting out and had it coming. Whatever the cause is of mistreatment, your family needs and wants to know. You don’t have to put up with ill-treatment or neglect.
Just understand, regardless of your age, despite the illness you have, or what color your skin is, you have the right to be treated with the same respect as any other patient. Remember, if you aren’t able to stand up against the injustices that may occur against you, help those who love and care for you so they can.
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