Patient Advocacy In Good Times Or Bad

NUrse caring for sick patient
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NUrse caring for sick patient

I’ve written a lot about medical issues that result from natural and man-made disasters. When we read about mass casualties caused by epidemics, building fires, floods, and other disasters, it’s easy to forget that each victim is important. We don’t just mean generally, but to parents, children, and friends.

When hospitals are overcrowded, exhausted but dedicated medical professionals take a beating. They’re human and fallible. Even in normal times, it’s easy for a patient to “fall through the cracks” and, perhaps, not receive the absolute best care possible.

As humans are, well, human, the highest level medical facilities may make mistakes. This happened to one of our adult sons, Daniel. Daniel had severe diabetes since the age of nine. Due to his disease, he developed kidney failure and partial blindness; he was on dialysis and a transplant list for more than a year. 

After a number of false alarms, a kidney and pancreas became available when a drunk driver took the life of a young father as he was riding his bicycle. Daniel underwent kidney and pancreas transplant surgery at a famous big-city hospital, one of the few in the state that performed this type of procedure.

Perhaps as a testament to his youth, Daniel’s 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 well enough to leave the Intensive Care Unit and go to a regular hospital floor. This meant that, instead of having a nurse assigned solely to him, he shared a nurse with several other patients. This is standard operating procedure and usually has no ominous implications.

However, when we went to see him the day of his transfer, he took a turn for the worse.  He was pale and his abdomen seemed more distended that it did before. There was a drain coming out of his belly, and it was full of bright red blood.

Daniel’s surgical drain filled with blood every few minutes

Seeing the blood draining out of his abdomen was concerning, to say the least. A transplanted kidney goes into the abdomen and bleeding is a known complication of the procedure. Having performed many surgeries myself, I took it upon myself to examine my son. I took Daniel’s vital signs earlier than scheduled and found him to have a racing pulse (tachycardia) and a very low blood pressure (hypotension). As we were unable to find medical staff, we emptied the bloody drain and watched it rapidly fill up again (and again) in short order.  It was clear that he was bleeding internally.

This was very late at night, well after visiting hours. Staffing was light, and it took some time to find his nurse, who was attending another patient. Our hackles were raised, and we’re not ashamed to admit that we raised a racket. This led an overworked resident to take a serious look at Daniel.  To her credit, the young doctor realized that something was wrong, and Daniel returned to the operating room. They wound up removing three liters of free blood from his abdomen before the hemorrhage came under control. He required transfusions of multiple units of blood and clotting factors.

Daniel recovered from this ordeal and, thankfully, his transplanted kidney and pancreas are still functioning years later. Thinking back, however, we shudder to realize how badly it could have ended. If we weren’t present at his bedside that night, we would have received a call in the morning notifying us that he had passed away during the night.

We relate this story not to gain sympathy or a pat on the back, but to convince you of the importance of being a patient advocate. If you are working to become a better medical asset to your people in hard times, then you must take patient advocacy as seriously as learning first aid. You must walk a mile in the shoes of your patient.

You may already see yourself as an advocate.  Indeed, most doctors today are sure they know what’s best for their patients. As a medic in a disaster, however, you may be overworked and under stress. This may make it difficult for you to see things from your patient’s perspective. Your patient may “fall through the cracks” if you’re not careful, simply due to the amount of pressure on you to care for a large survival community.

Consider appointing a family member or other individual to follow a sick patient with you, not necessarily to provide care but to provide support as an advocate.  Allow your patient to participate in medical decisions regarding their health whenever possible. Never resent their questions, whether they be easy or hard. If the patient is too weak to competently participate in important decisions, communicate your plan of action with their appointed advocate.

Here are Alton’s Three A’s of Advocacy:

1) Accept the importance of a patient’s rights.

2) Advise the patient so that they can be a full partner in the process.

3) Allow an advocate to be an intermediary if the patient cannot actively participate in their care.

Joe Alton MD

Dr. Alton

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