Mar102012

9 Comments

The Importance of Patient Advocacy

Guest post by Dr. Bones, aka Joe Alton, M.D., co-author of The Doom and Bloom Survival Medical Handbook.

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We spend a lot of time on my blog talking about medical issues in times of trouble, from storms to a complete societal breakdown. However, times of trouble can be very personal, such as when you find yourself or a loved one battling a debilitating medical condition.

This has happened to one of my sons, Daniel. Daniel is a 30 year old who has had severe diabetes since he was nine years old. Due to his disease, he has developed kidney failure and partial blindness, and has been on dialysis for the last year. He has been on a kidney and pancreas transplant list since that time.

After a number of false alarms, a kidney and pancreas became available as a result of a drunk driver taking the life of a young father of two as he was riding his bicycle. He underwent the surgery at a large hospital, one of the few in the state that performed this type of procedure. The good news is that the new organs functioned well from the very start, producing urine and lowering his blood sugars to almost normal levels within 24 hours.

Several days after the operation, he was deemed fit enough to leave the Intensive Care Unit and go to a regular floor. This means that, instead of having a nurse specifically for him, he shared a nurse with several other patients. This is standard operating procedure and usually has no ominous implications.

However, when I went to see him that day, he wasn’t looking well. He seemed pale to me, and his abdomen seemed more distended than it did before. There was a drain coming out of his belly, and it was full of, what seemed to me, frank blood. He was getting vital signs (blood pressure, pulse, etc.) taken every 4 hours, and the chart appeared to show that he was stable and doing fine.

image by striatic

Seeing the blood draining out of his abdomen concerned me. I took his vitals myself earlier than scheduled; he was tachycardic (pulse very fast) and his blood pressure had dropped. As I was unable to find medical staff, I emptied the bloody drain and it filled up again (and again) within 2-3 minutes. It was clear to me that he was bleeding internally, and it was a significant amount. He was heavily sedated and wasn’t complaining; I doubt , since he is nearly blind, he could find the button to push to notify the nurse even if he was awake.

This was late at night, and most visitors had left. Staffing was light, also, and it took some time to find his nurse, who was attending to another patient. My surgeon’s hackles were raised, and I (not ashamed to say) raised a ruckus which led to an overworked resident to take a look at him. To her credit, it was clear that something was wrong, and he returned to surgery. They wound up removing 3000-4000 cc of free blood from his abdomen and stopping the hemorrhage.

He is back in the ICU and, thankfully, his kidney and pancreas are still functioning. However, thinking about this episode, it was clear to me that it could have ended very badly. If not identified in time, it’s very likely that I would have received a call in the morning notifying me that he passed away during the night.

Patient Advocacy

I’m telling you this story not to gain sympathy or a pat on the back, but to convince you of the importance of being a patient advocate for your loved ones who are experiencing a medical TEOTWAWKI. If, like many of our readers, you are working to become a better medical asset to your people in hard times, then you must take patient advocacy as serious as learning first aid.

image by salimfadhley

Most healthcare providers see themselves as advocates for their patients, but they are limited by their workload and many other duties, especially in public or university settings. Having an outside person who is invested in protecting their loved ones is important; it’s too easy to get lost in the system, and a hospital patient is often in too weakened a state to fend for themselves. You don’t have to be a medical professional to be a patient advocate. Most are just friends and family who offer their time and support to help the patient communicate with their doctors and cope with a process that is often confusing and, frequently, just plain scary.

Nurses are often excellent choices as patient advocates, as are any of you who have taken on the responsibility of survival medic. Ethically, you are honor-bound to be committed to the medical welfare of those in your family or group. Part of this duty is to protect the rights of the patient. You will be required to be inquisitive regarding the care given, as well as courageous and vocal in your dealings with healthcare providers. It helps a little to be a diplomat, as well, but I’ll take the first two requirements over that.

Many consider a hospitalization a time to heal quietly, but the patient is best served by participating in their medical process. This means steering their providers to a course of action that is best for them, not the system. If the patient is too weak to take on this burden, then someone else must. Some hospitals, to their credit, have patient advocates on staff; better, though, to have a dedicated and supportive friend or family member to run the gauntlet for them. That person must follow Ol’ Dr. Bones’ Three A’s of Advocacy:

Accept the importance of a patient’s rights.
Advise the patient so that they can be a full partner in the therapeutic process.
Act to run interference between patients and their caregivers to ensure that the patient receives the best care possible for their condition.

My son is still in a fragile state, and I can’t tell you how he will end up. I CAN tell you that he is still alive, and he has advocates that will fight for him. Pick up the flag, and protect those who might not be able to protect themselves. It’s up to you.

Listen to Dr. Bones and his wife, Nurse Amy on their radio program, The Doom and Bloom Hour Show.  Read their blog here, and buy their medical handbook, The Doom and Bloom Survival Medicine Handbook here.

There may be links in the post above that are “affiliate links.” This means if you click on the link and purchase the item, I will receive an affiliate commission, which does not affect the price you pay for the product. Regardless, I only recommend products or services I use personally and believe will add value to my readers.

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I'm the original Survival Mom, and have been helping moms worry less and enjoy their homes and families more for 5 years. Come join me on my journey to becoming more prepared to handle everyday emergencies and worst case scenarios.

(9) Readers Comments

  1. My sister and niece are both type 1 diabetics with insulin pumps. I often wonder what would happen to them in a SHTF situation. I am a RN and I believe every patient should always have an advocate with them when in the hospital. They can alert the RN to any change in the patients condition and can be the first line of defense when the patient isn’t capable. The RN could be excellent and very competent, but remember we most likely have 4-5 other patients. Never leave a family member in the hospital alone, please take my advice as a NURSE!!

  2. When my mother was in the hospital for a stroke, each family member stepped up and did the job best suited. My dad handled insurance and billing (going to the financial office every day). My brother handled errands, shopping and providing everyone with clean clothes etc. I had just taken a college course Biology for Survival – How do deal with hospital/emergencies. It was intense. Boy, did that help. I was able to understand everything the various nurses and doctors were telling me. I was not panicked, which helped my mom and dad. I stayed with her from 7:00am to 10pm everyday and rested at a hotel connected to the hospital. I am 50 years old and it is never too late to learn. It made a terrible situation manageable.

  3. I am a Registered Nurse at a 600+ bed Level 2 trauma center. Our hospital is rolling out a program called “Condition H”. This is a dedicated line that family members can call if they are concerned about their loved one, such as in the situation you described. The daily assigned critical care resource nurse that responds to these calls then responds to every call, evaluates the patient, collaborates with the primary nurse, and initiates interventions as necessary. But never the less this program only works if the patient has an advocate there to raise the questions and concerns.

    I pray your son makes a full recovery.

  4. Your article should be MUST reading for EVERYONE entering a hospital.
    I care for my Husband and my Grandmother…when I’m not resting at their bedside, I’m sure to pop in at all hours of the day and night as part of my SOP.
    The nursing staff-while most are excellent- is too overextended to catch every detail.
    And patients are often too weak to challenge let alone disagree with medical professionals coming at them while they lay prone-tethered to tubes and what-not, so they must have an Advocate.
    One who can assist in the healing process, speak for them when called too, interpret jargon, or even run interference when needed.

    Bless you and your son as he gains his strength.

  5. Having cared for sick family members this to so important. Thank you Survival Mom and Dr. Bones for so many excellent posts. Knowledge is power.

  6. I’m a soon to be nurse and found your story very interesting. Many of the patients I have had also have family with them. And several times I have been complimented and told they believe I will be a great nurse. However, most of the time I work with only half the patient the RN I assigned to has, thus I can devote a few more minutes to patients. I enjoy that but also know when I am an RN the situation will change. I also know our healthcare system is strained and the likelihood of it getting any better is very slim. Forgive me if you disagree but here are my tips: 1. even if you are family hit the call bell if you are concerned- we are required to responde 2. don’t empty anything because it is important that we can assess the amount & color/consistancy of the fluid draining or urine in a cath (hit the call bell if this is in need of attention) 3. truth is you know your family best, a nurse is not guaranteed to get the same patient everyday so let the nurse/nurse manager/dr or whoever know & if you feel the need then request that the dr come – although the dr may just be the on-call dr and may not be there right away if you request it then we have to relay the message. Remember your patient rights.

  7. Thanks to all for their kind words and support. My son Daniel, after three trips to the operating room, finally stabilized and is now home (weighing only 100 pounds) with a fully functioning kidney and pancreas. His main challenge now is to gain weight and muscle mass while staving off rejection issues.

    Special thanks to the Nurses who have responded to this post. They are often the only patient advocate for a hospitalized person without family…

    Dr. Bones

  8. Thank you for the update about your son. Wishing him good health and strength.

  9. When we went through my mom’s final illness, I so wished I could be with her more. My dad was completely shellshocked, I had two babies under 2 who were not allowed in ICU, and she adamantly refused to have a “stranger” with her. I don’t think it made a difference in the outcome, (her condition was not survivable) but she certainly could have been more comfortable, less stressed, and altogether better cared for. We could tell that she was not rational and had impaired sight and hearing. However, she was “Faking it” for the medical professionals because she believed if she acted “well” they would let her go home. She would nod and smile when spoken to, and to a busy nurse who had not met us before, that was accepted.
    Similarly, when I delivered my first child, I shared a room with a young who spoke little or no English. She appeared to have had an emergency C-section and was in a lot of pain, and vomiting profusely. But she woudl nod an d smile when asked questions. I had to speak up for her and tell many different staff taht she spoke no English. I don’ tknow why taht wasn’t noted in her chart. But she would often have gone with out attention or pain meds if I had not spoken up, because the staff did not know she cou’dnt understand.

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