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.

Patient Safety Day 2008

We held our Patient Safety Day program last night at the South Nassau Unitarian Universalist Congregation in Freeport Long Island.

I was thrilled with the turn out. Old friends from years ago returned and new friends were made by people who came to hear the stories and the lessons we have to share. I was happy with the content of the program. Our speakers were powerful and truthful. They told their stories and shared their experiences that changed their life forever so others can learn. I’m sure it was healing and helpful for many to be there. I was so sad to be there.

If only there was another way that we can tell people about patient safety without getting into the details of a death or injury. If only we didn’t need to stand in front of a room full people and cry because of our pain. But, I don’t see that happening soon and I also don’t see the healthcare system doing a great job keeping us safe - yet. Our community education can work, if there was more of it. But we have to be out there doing it. There just isn't a big enough call to learn about patient safety, health literacy and diversity or infection control.

We lit candles and shared stories and said a prayer for those who couldn’t be with us and those names we hold close in our heart.

Leonard told us again about his wife’s death and how he plays mom and dad to his 3 children. His daughter is 9 now and it was her birthday the 24th of July. She is a constant memory of his wife’s death at childbirth from a misplaced epidural.

Mary spoke about her husband who died when a sponge was left inside of him during surgery. The sponge dislodged and killed her husband.

Meryl uses words like torment and murder. Not knowing the details of why her dad died and not ever having a conversation with the hospital, her anger may never change.

There are so many stories. I begin to want to hear them all but I don’t. I want to help them all, but I can’t.

How Heroes Are Made

I believe no one who has had a bad experience with the healthcare system plans to stand in front of a room and tell about it. They do because they want others to learn from their experience and want to make the healthcare system safer. On July 25, 2008 as we remember the people who have lived with a medical injury, lost a loved one or have had a life-altering experience while trusting the healthcare system, 3 women will tell their story and what their experience has done to change their life.

It’s difficult to imagine that there are so many stories and when no one talks about them, no one learns about them so history will continue to repeat itself. If we don’t start sharing information amongst patients and families, who is protected? No one!

A mental health professional, a physician and a mom who pulled her child out of a Long Island hospital and ultimately saved her daughter’s life will all share their stories. Past what the media will tell us, you will learn their life’s lesson’s and what we can learn from each other that we won’t learn elsewhere.

I hope people will join us at Patient Safety Day on Long Island. Visit here for more information.

Should We Use the Name of the Hospital?

I was recently asked the following question “I wonder why you don't mention the specific hospitals involved in these issues. Wouldn't that put appropriate pressure on them?”

I thought this blog would be an appropriate place to respond since it is a question that I am often asked. The simple answer is, because patient safety is not about one medical facility or medical professional. Patient safety is about the whole healthcare system.

To mention a hospital or doctor that was, or is considered the cause of a patient’s injury or death would be giving false hope to the other people who are still deciding on what doctor or hospital to use. By not using the doctor or hospital mentioned as being involved with a patient’s injury, does not mean an injury won’t happen. We are all at risk, at every facility we choose to use for our healthcare.

Infections are a problem at every facility and a medication overdose can happen anywhere. This is one reason I can’t see more patient safety initiatives being developed until the old ones are used. I also can’t understand why patients and their families are taught about patient safety advocacy on a regular basis to make sure the already available standards and initiatives are followed.

So, I don’t discount the people or the media who use the name of the facility where there was an injury, I just think the problem is bigger than that one story.

Safe Surgery Saves Lives

Safe Surgery Saves Lives is a check list introduced by the World Health Organization (WHO), which partnered with the World Alliance for Patient Safety (WAPS) to develop the “Safe Surgery Saves Lives” initiative. See You Tube Video here. This checklist is for surgical teams to improve surgical safety, reduce medical errors and reduce death during surgery around the world.

Although my personal, nor business budget would have allowed me to participate in the event in Washington DC to introduce this new initiative, I can’t say that I am disappointed that I couldn’t attend. Don’t get me wrong, I am deeply in support of anything that makes health care safer, but something about this bothers me. Maybe someone will comment and help me understand this better.

This new initiative means healthcare workers are given more suggestions for making surgery safer. Not considered regulation, but instead tools to work with. This, on top of the many, many regulations, standards and policies just seems like another way that the already well funded people in medicine are getting more funding to put together more initiatives to overlap the already non-working initiatives.

Do I sound annoyed? Probably. If this is not regulation, than why have it? Regulations are often not followed anyway or we wouldn’t be in this mess already. We have plenty of initiatives already like SCIP. I’m still struggling to figure out why doctors (at least many who I and my associates have used) still don’t wash their hands!

The Joint Commission has fine patient safety standards that can be followed which include marking the site of surgery and checking who the patient is before the surgeon cuts them open. Yet there are still too many reports of “wrong” surgical procedures. About ten every month are reported to The Joint Commission.

Healthcare organizations don’t even need to be accredited by the Joint Commission to practice the JC standards. They just need to do it. I’m not trying to be negative, again, I am always happy about new ideas that can make patient care safer, but something about the hoopla that goes with this just doesn’t seem to fit. I can’t get excited anymore.

Is it Really the Pharmaceutical Company?

I just read a cute cartoon about doctors prescribing medication to their patients and taking gifts from the pharmaceutical industry. The cartoon was labeled The Hippocrates Oath. I have to wonder whose responsibility it is to take the medication or do the research about the medication the doctor prescribes.

Years ago I may have medicated my son if I didn’t test him myself that his behavior seemed to be based on the amount of sugar he consumed. He was born sick and premature and had a nurse caring for him the first 3 years of his life. She helped monitor his food. I’m not sure that I would have been able to do that myself if I had to. It was time consuming and a lot of extra work. But, he was worth it and he never took any mind altering drugs even though he had bad tempers and behavioral problems. Now, he is a wonderfully well adjusted (so far) teenager.

I can’t say the same for myself. It is easier to take a pill to lower my blood pressure than to exercise. Although, in the last few months I have really thought about getting off my medication, I still make the choice to take pills each day. Many of us know what we have to do to, we just don’t do it. We don’t even ask the doctor about alternatives to the medication.

So, I’m not sure I can blame the pharmaceutical company for the medication I take. We may have to look deeper at ourselves, in many cases.

Woman Dies

The video of a woman dying on the floor of a New York hospital has caused an uproar with many patient safety advocates. The fact that it was filmed, made it fairly simple to figure out what happened. The hours leading up to her death, the death itself and what happened following her death were all on film.

What wasn't filmed, is what the thought process was that led a security guard to ignore this woman and other staff to allow this woman to die alone on the floor of the emergency room just feet away from qualified staff to help her. Until we know what people are thinking at the time, as well as what actually happened, we will not understand or solve the patient safety problem in this country.

Letter from a Doctor

I just received a letter back from the doctor who didn't wash his hands.

He wrote in his letter; "I certainly agree with you that hand washing is an important rule to infection control. Health care professionals should certainly wash their hands or use some type of disinfectant gel after completing a patient encounter. Sometimes I will perform one of these methods of hand hygiene immediately after examining the patient while other times I will walk to an adjacent room and perform hand hygiene. On other occasions I may enter am examination room and perform hand hygiene prior to the exam".

I now understand the different methods this doctor uses to perform hand hygiene. He has educated me and explained the procedure he uses. But his thoughtfulness is how he ended the short note:

"As a result of your letter, I believe I will have an even greater appreciation for the importance of hand hygiene in both the office and the hospital setting."

I'm not sure if I would use him again but I surely would like to shake his hand. There's nothing wrong with stopping infections one person at a time. We have to start someplace.