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Medical Advocacy

Updated on May 31, 2016

Lesson: try not to lose half of your finger in a rural area

A couple years ago the tip of my father’s ring finger (about a half inch) was severed by a car door. At the time he lived in a rural area. He was taken to the hospital and they placed the fleshy carcass on a dry paper towel and left it on the counter. By the time I got there they didn’t even know where his finger was, the nurse’s assistant frantically searched for the piece of finger. After several minutes she found it, I wet the paper towel, and we drove to the next town’s hospital. After several minutes I went in the back to check on my father, he was high on pain killers, the doctor on call explained to me that he would be amputating my father’s finger to the knuckle. My father, in his drug induced state, gave permission for the amputation. I refused. I told the doctor that there must be another way. What about the tip that we had brought in, couldn’t they re-attach that to his finger? No, was his answer to me. Apparently the finger had dried out too much and could not be re-attached.

He needs all of his fingers to play guitar

I explained to the doctor that my father is a guitar player, and he needs that finger. The doctor became agitated with me, and told me if I didn’t like his diagnosis and plan of action, I could take him the bigger city, about a forty-five minute drive. My dad did not want to go anywhere else, my father said it was ok. The doctor looked me in my eyes, and said that amputation was the best thing for my father. I could not reconcile that, but it appeared that I was mostly out voted, although I do not think highly medicating someone and then asking them their opinion is the responsible, or right thing to do. When the doctor was looking at me, I had an idea. Our eyes locked and I asked him to consider what he would do if my father was his father, would he find away to save his finger? He said that it would be easier to amputate, easier for who? It would not be easier for my father.

What if it was your loved one?

I asked him to think about the future, what if a loved one became hospitalized would he want the doctor to consider what was better for the doctor, or what was better for the patient. Then I left the room. An hour later I was called back into the room. The doctor wouldn’t, this time, make eye contact with me, and he said that he decided not to amputate. He had done some skin graphing, stretched the skin and reconstructed the finger as best as he could. I gratefully thanked him, he mumbled your welcome, and never looked up at me. He then left the room.

I often wondered if I simply reminded him, that a patient is more than a patient. They could be someone’s father, son, brother, uncle, mother, daughter, sister, or aunt. Doctor’s deal with life and death every day, and maybe they get lost in the little details of life. People who are going to be in the hospital need to have a advocate, someone who will fight for their rights, and their perspectives. A well meaning stranger is never going to have your back like someone who loves you. Pick out the fighter in your life, the one who can communicate effectively with medical staff in a professional, but firm way. You don’t want your ghetto fabulous cousin at the hospital making it worse for you.

“Keep your eyes and ears open. Many healthcare professionals are efficient, but still, mistakes can be made. Sometimes hospitals are understaffed. Nurses may be distracted. Double-check medications, ask questions about procedures, and watch for anything that can cause allergic reactions. Your loved one won’t be able to focus as well during this time, so staying alert for her could save her from additional setbacks” (Jane, 2010,p.1)


She went to the clinic to have a biopsy, and never came home

This article on medical advocacy was prompted by my father’s ordeal, but it was reinforced by a friend’s death less than three weeks ago. Hospitals are a bad enough place for a number of negative possibilities when you are an insured individual. When you are an indigent patient with a serious death sentence, you need a medical advocate in the most immediate way possible. A fifty year old friend who had been suffering a prolonged cough, and battling exhaustion went to have a liver biopsy through a free clinic. When they opened her up they realized that she had cancer throughout her entire body. Further tests while she was sedated confirmed the diagnosis. Her husband was with her. She was in no pain, and she fully expected to go home later that day with either good news or bad news, but she expected to go home. The staff explained the findings to her husband, and he was told that they would wake her up from her sedation and tell her what they found, and ask her if she wanted the medical staff to make her comfortable. They explained to her husband that they would increase her morphine and keep her as comfortable as possible, so she would not be in any Pain. The medical staff performed massive sedation until she passed away.

Your loved one's need a voice, when they cannot use theirs

They woke up this lovely, wonderful, and newly-made grandmother, and told her that she had cancer throughout her entire body, as well as her brain. They then asked her if she wanted them to help her be comfortable. They kept her medicated, increasing her medication until she died. I can guarantee you that her definition and their definition of being kept comfortable were very different in origin. She fully expected to get her biopsy and then go home. She would have never gone to have the procedure if she thought for a minute there was a chance she would never leave. I guarantee that she had people she would have liked to say goodbye to, things that she would have wanted to handle before she left this world. She was not in any pain, so why is this not considered medial assisted suicide? I expect that a women with cancer was going to be very costly for the free clinic, so they put her down like a dog. Her husband did what the medical staff told him to do, I do not blame him. He is a sheep, he has been programmed to follow medical advice, as most of us are. I implore the public to always listen to their instincts, their gut feeling. Do not go against common sense, advocate for your loved ones. If you don't who will?



References

EXTRAORDINARY JANE Everyday Women (2010). 7 Ways to Be an Advocate for Your Loved One with Cancer. Retrieved April 25, 2012 from

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    • Jenna Pope profile image

      Jenna Pope 5 years ago from Southern California

      Wow! Great article. My son's doctor told me to "let him go" because of a birth defect. We said, "No," and fought hard for him. That was 28 years ago. Now he is a Navy Veteran with a lovely new wife and a great job in the mining industry. He is a wonderful human being and was even a Christian missionary for years, starting as a teenager.

      I'm so thankful that we listened to our hearts, instead of to that stupid doctor.

      Voted up.

    • RTalloni profile image

      RTalloni 5 years ago from the short journey

      Well done! This will generate great comments.

      I don't think, though, that your friend received medically assisted suicide. I'm afraid that it is actually called something else in the court system.

      You couldn't be more on target about advocates. Thank you for sharing your experiences so others can learn from them.

    • k2jade31 profile image
      Author

      Kimberly Shelden 5 years ago from Idaho

      Thank you both for your great comments. Jenna I am glad that you didn't listen either:)

    • k2jade31 profile image
      Author

      Kimberly Shelden 5 years ago from Idaho

      Jenna, to add to your comments, the doctors told me that my second son would probably have something like downs because they had found something on his brain during a sonogram. They had me really upset, and I was really young. They talked me into having a amniocentesis. Knowing what the risks are now I would have never had that test again. It turned out that my son was a perfectly healthy little boy. He is now almost 16, brilliant and beautiful.

    • twaggoner profile image

      twaggoner 5 years ago

      Very interesting and sad that it is necessary for there to be a question of necessity for an advocate, but as you pointed out not only for the insured but unaware, i feel that especially for the uninsured who are "too poor to live", someone needs to be there to make sure that they are treated as humans and not a profit margin. thank you!

    • k2jade31 profile image
      Author

      Kimberly Shelden 5 years ago from Idaho

      Thank you for your comments, I like what you said, and you are dead on!

    • KoffeeKlatch Gals profile image

      Susan Haze 5 years ago from Sunny Florida

      Very well done. Great information. My doctor told me years ago when was pregnant with my youngest daughter that we needed to do an amniocentesis. I refused. I was then told that they were concrned that she would be mentally and possibly disabled because of medication that had been given to me before we knew I was pregnant. I still rfefused. It was a high risk pregnancy, I spent most of the last half on bed rest. When she was born she was perfect. She is now a bio-chemical forensic agent. I guess they don't know everything. Up and awesome.

    • k2jade31 profile image
      Author

      Kimberly Shelden 5 years ago from Idaho

      Thank you, I do not know if you read the previous comments, but with my second child I was 23 years old, the doctors had talked my husband and I into having an Amnio, I didn't even know at the time what the risks were. I passed out and hit the floor after the procedure. After they woke me they gave me information concerning the possible complications, I was horrified. I never would have had that done, if I had known. That baby was perfectly healthy and will be turning 16 this September. I know many members of the medical field, and the people I know are so well meaning and have such a heart for people, but they are not God, no matter how well meaning everyone should be able to make a decision that doesn't have some one else's agenda attached to it. Sorry for the ramble, I am very passionate about people. Thank you so much for reading and commenting~

    • profile image

      DigbyAdams 5 years ago

      I think that one of the most important aspects of continued good health is to have a relationship with your doctors before you get really sick. So they know you as a person. That's one of the reasons that my husband and I have chosen to live where we do. We've got our community in place, which includes the doctors that we will need as we approach mid-life.

    • k2jade31 profile image
      Author

      Kimberly Shelden 5 years ago from Idaho

      Thank you DigbyAdams that is a very good point. Thank you for reading~

      Kimberly

    • everlearn profile image

      everlearn 5 years ago from Greater New York Region

      Very interesting reading (not to mention an intimidating picture at the end). Congrats on the hubnugget nomination and voted up!

    • k2jade31 profile image
      Author

      Kimberly Shelden 5 years ago from Idaho

      Thank you everlearn for reading, providing kind comments, and voting me up, much appreciated!!!

    • Marcy Goodfleisch profile image

      Marcy Goodfleisch 5 years ago from Planet Earth

      You make great points here - and ones we need to integrate into our culture. We have an aging population, and this issue is likely to worsen as time goes on.

      Congratulations on your nomination for a Hub Nugget!

    • k2jade31 profile image
      Author

      Kimberly Shelden 5 years ago from Idaho

      Thank you very much, I checked out your winning hub. Your writing is very polished, and your professionalism shows. Thanks for reading~

      Kimberly

    • k2jade31 profile image
      Author

      Kimberly Shelden 4 years ago from Idaho

      Thank you to all my hubber friends who voted for this hub- I appreciate your support~

      Kimberly

    • Denise Handlon profile image

      Denise Handlon 4 years ago from North Carolina

      Someone has to bring light to this situation and I'm glad that so many people agreed with this well written hub and voted it up. Congratulations on your win.

      I recently had a situation with my (indigent)brother and a heart attack that brought him to the ED in his home town. I am a five hour drive away. Had I been closer and able to get there I may have been able to advocate more for him than merely by phone. He was brought to the ED on a Friday evening-always sucks when you go into the hospital on a weekend! The 'regular' staff is not there...

      He was placed in the OR (after coding) and a stent was put in...he can't tell me 'exactly' where. ICU on Friday, Stepdown on Saturday, discharged on Sunday.

      Discharged? What? Yes, the man had no transportation, because he uses the public bus system and they don't operate on Sunday; he had no clothes, because they ripped them open when he coded and were not wearable again; he had no money for his medication nor transportation to the drugstore; AND, he was locked out of his home, because when the ambulance arrived they locked the door-keys inside, behind them.

      When my sister told me they were sending him home after just two days I was furious. I spoke with the nurse caring for him Saturday evening and explained all of the circumstances. She assured me they would not send him home under those conditions. Since I work as a nurse in the hospital I had the advantage of knowing what exceptions can be made.

      I called Sunday morning after my shift to discuss the latest orders with his nurse who informed me that yes, they were sending him home, but they made arrangements to accomodate him with: a taxi, a locksmith, a set of scrubs to wear and one pill needed for his cardiac care.

      Again, I was disgusted that they would not allow him to stay until Monday. When I called on Monday he told me that he went to the pharmacy and discovered his 'new' medication not only cost an arm and a leg, but needed preapproval. All of this could have been discovered via a more thorough discharge investigation with the social worker on Monday. I do know that had I not made my presence known to the staff that Saturday evening and made many calls to discuss this situation with the charge nurse and case manager, they would have put him in a taxi in his hospital gown and be done with him.

      Good for you for presenting to that doctor the human side of 'fixing people'. Bravo for taking a stand and advocating for your father. Most people are intimidated by medical staff and this reinforces the 'thou shalt not question' syndrome.

      How sad that the woman in your example had this experience...that is what happened to my mother. She went into the hospital and wanted so badly to go home, but my father was insistent on leaving her in 'medical hands' in the hospital. She had terminal cancer.

      Thanks for sharing. Voted up

    • k2jade31 profile image
      Author

      Kimberly Shelden 4 years ago from Idaho

      WOW- Denise, thank you for reading and commenting. As a nurse you must see the inhuman business side a lot, although many nurses are so wonderful, I have more issues with Doctors- they do not like to be questioned. I once was asked to leave a doctor’s office for my son, because I told the doctor he had a God Complex, FYI- never tell a doctor that, they do not like it very much. I am very sorry to hear about what happened to your brother and mother, and I know these sort of stories are happening hundreds of times a day around the US. The medical staff are more likely to take better care of your loved one, do more, and be nicer when you are there making sure. I hope your brother is doing well now, and thank you for voting me up,

      Kimberly~

    • Denise Handlon profile image

      Denise Handlon 4 years ago from North Carolina

      My brother is doing much better now, thank you. I agree-never tell a doc who is treating you or your family member he / she has a God complex...

    • k2jade31 profile image
      Author

      Kimberly Shelden 4 years ago from Idaho

      :) sometimes it just gets to that point~ thank you for your addition to this hub!

      Kimberly

    • aliastrip profile image

      aliastrip 4 years ago

      As a medical field worker, I applaud you. Too many people just let a doctor tell them what is best, without thinking. I often say to my loved ones, "A doctor is not a magician, hes a guessing game. He makes choices based off of multiple choice."

      Co-workers that forget humans are actually people and have loved ones often received the, "This could be your grandmother, or your mother, sister, cousin, are you sure you would like it if someone treated them the way you do?" speech.

      Nice work.

    • k2jade31 profile image
      Author

      Kimberly Shelden 4 years ago from Idaho

      Thank you aliastrip, I really appreciate you reading and commenting. I am in awe, and often in disgust when I hear how badly people treat other people. It saddens me that if we would just remember what we learned in grade K, life as we know it would be fundamentally better. A little golden rule goes a long way!!! Thanks again, take care.

      Kimberly

    • heartwort profile image

      heartwort 4 years ago from Virginia

      Interesting hub and comments. A lot of issues are raised here. Blind trust in the healthcare system is never a good thing. Unfortunately health care in this country is basically a free enterprise. Buyer beware. Hospitals are often overworked, understaffed and operating in survival mode - all while watching the bottom line. Consumers have to push for what they want. It can take courage and a some knowledge.

      That said, as a twenty-year veteran of nursing, there's a lot of people out there who just don't have realistic expectations of what the healthcare system can provide them. Nothing worse than watching a patient exist on machines and drugs when everyone caring for that patient knows the patient will not likely survive and, if they do, he or she will be badly broken. But many families won't let go and the patient exists much longer than his time, suffering and without dignity. We all want a miracle and hope is a powerful thing but we can't lose all track of reality.

      My point in this is to urge people to remember that it can work both ways. There's horror stories of what happens when we don't ask any questions and we just do what we're told, and there are horror stories of what happens when we don't do what we are told. While we need a measure of distrust and vigilance in caring for ourselves and our loved ones, we also need listen openly to doctors and nurses and think in terms of what the patient would want and what we can realistically expect. Most healthcare providers really want what they believe best for the patient.

    • k2jade31 profile image
      Author

      Kimberly Shelden 4 years ago from Idaho

      I appreciate your comments, and I have been waiting for the other side of the coin to emerge. I agree that people need to have realistic expectations, but as good as the intentions that medical staff have- there are many other factors they are faced with besides patient care. People need to represent their loved one's because the bottom line for patients and their loved one's is receiving the correct care, yes people do want miracles, and there are miracles to be had- but can you honestly say that you treat each patient with the level of care you would want for your mother or father or child? I know there are always two sides of the story. The first story I told was a first person account, it is what I witnessed with my own eyes and ears, unfortunately there are many more stories I could have written about. This hub was published to help people be aware, be conscious that they need to be there to help their love one's when they cannot help themselves. I hope you can appreciate that message?

    • heartwort profile image

      heartwort 4 years ago from Virginia

      I don't think I disagreed with anything you wrote in my comment. If I did, I didn't mean to. Of course people need to be aware and look out for their loved ones when they are ill. I just urge them to do it with an open mind and with what the patient would want most in their priorities. Neither extreme is good. The best service people can provide to their loved ones is to have deep, open conversations, before anyone gets sick!, about what they would want if they could no longer make decisions for themselves. Then, advocate for them when and if that time comes.

      Yes, I can honestly say that I treat each patient as I would want my loved ones to be treated. It is also what I teach when I have students working with me. I know not all nurses are like that but that was why I became a nurse, because of both good care and bad care I received during my first pregnancy. You could say I was both inspired and disgusted. I wanted to treat people the way I wanted to be treated. Funny thing is, not everyone wants to be treated the way I do.

    • k2jade31 profile image
      Author

      Kimberly Shelden 4 years ago from Idaho

      Well I thank you for your comments. Many people come to their profession through a personal experience of some kind, helps me think that we are all meant for something, without some negative, sometimes we will not get to see the positive.

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