Patient Safety Advocating

When the call came in to the PULSE patient safety center that their mother’s bedsores were not healing while in a reputable New York hospital, I knew I was only going to hear one side of the story. But that’s OK. I only need one side to know that someone isn’t satisfied with the care being received. I’m not, after all there to make judgment, I am going to try to help that family become the best patient advocates they can be and maybe, save their mother’s life. I don’t need the “whole” story.

The sisters seemed to being doing everything right by sitting with their aging mom all day. They questioned the care she received and reported back to the other family members what was happening. But after speaking with the patient representative and not being satisfied with their conversation and still not satisfied with the care being received, I was called and asked how I would help.
“I don’t do your advocating for you” I explained. ‘I will help you advocate for your mother”.

First I wrote down the long list of people they already spoke with. The adult daughters shared the conversations. They were told to hire a private duty nurse, there isn’t enough staff and other comments made them uneasy.

I realize not only am I getting one side of the story but there are many pieces that will be left out. I can only start by finding the person this family can speak to and get a straight answer. If their mom will die, they understood now that this is a possibility. They wanted to make sure they did everything possible to help her now infected bedsores that were getting worse, to heal.

I never know if I can help save a life. In most cases, I can’t. It’s often too late.

Being respectful to hospital staff is very important. I know they deal with sick patients. They are experienced at what they do – usually. But I am experienced at being scared and feeling helpless when you know someone may die. I respect the families for trying and doing what they are being told to do by the Institute of Medicine, The Joint Commission and the Agency for Healthcare Research and Quality. They are staying involved.

I call and leave a message for the risk manager while sending notes to people I know who work in healthcare and may have a name for me into that hospital. I want someone who will be sure the family will get the care, treatment and respect they deserve. They have already explained the relationship between themselves and the patient representative didn’t work. They want more. They have a right to ask and receive answers by people they feel are listening and they can trust – whatever that means.

I speak to the risk manager who tells me to send the family to the patient representative who can help. She hears the exasperation in my voice and asks why. Realizing she obviously conveniently did not hear me say the family was not satisfied with that conversation, I decide to look for someone in quality assurance, the medical director or in patient safety. Before hanging up, the risk manager gives me the name of the patient representative to call. I later learn from another conversation that this patient representative no longer works there.

While waiting for calls to be returned, I keep in touch with the family, assuring them I will not divulge the patient’s name. By not offering the patient’s name, the hospital staff can not say to me that HIPAA policies will keep them from speaking to me. We won’t speak about the patient. I only want a place the patient’s family can call and get a person they can trust.

After an entire day of calls, conversations and returning calls, I spoke to someone who committed to stay on top of it. A family meeting was called and the family seemed satisfied that they were heard, and respected. They promised to me that they too will be respectful of the nurses and doctor’s but will call if they think I can help again. I would go there if I need to. I also want to see what is happening first hand.

As I contemplate another day’s work, I have to wonder how our healthcare system is so complicated and the patient’s rights are designed so a sick, injured are unconscious person can’t possibly access them.