My Surgery
My surgery was successful and as I was resting in the hospital recuperating. Although everyone was friendly and charming, I was amazed at what I saw unfold in front of me.
My experience started when I walked into the operating room, able to see the Time Out poster on the wall. It wasn’t the interactive Check List Board I would have preferred, but it made me aware that this group had some idea of the importance of cooperation. The anesthesiologist, who had many years of experience, gave me a calm and reassurance I needed knowing what I know about surgery and surgical complications. I also am well aware of the miracles of surgery and how often a patient’s quality of life is improved following surgery – otherwise I would not put myself in this position.
I asked, in the operating room to be part of the Time Out procedure which address The Joint Commission Universal Protocol of wrong site procedures I was asleep before that ever happened.
I won’t share all the details here, there are just too many, but I will tell you that my name and birthdate were rarely verified. I can count one time, when I first arrived and the second when the nurse was telling me something that was contradictory to what the doctor had said. “You are Corina, right” she asked. I said “yes” and then she asked me my birthdate.
My medication, only one, came only on the first day in it's original wrapper even though I asked for them all to be delivered that way. I was told that Percocet does not come individually wrapped and I cannot see the wrapper that this pain reliever, narcotic was being delivered in. My advocate was with me, but I asked him not to say anything. By this time, I was preparing to go home.
15 minutes later, when the Colace was delivered in a small cup, without the wrapper, by the same nurse, I asked if these also were not available to be delivered in their original wrapper. The nurse asked if this “annoyed” me. I explained I wasn’t annoyed but for both of our safety – so she doesn’t make a mistake and so I get the proper medication, it makes sense that I, or my advocate with me for the days I am here, verifies this information. She left the room with no response.
I was given a shot for blood clots that were also not marked for my verification. My doctor never told me I would be receiving shots. Given late at night, after my pain killers and after my advocates went home because the room was too small and crowded, I gave in.
The privacy curtain for my roommate, broken for at least 2 of the days I was there was not fixed when I asked the nurses or aides to fix it but was finally fixed when I asked housekeeping to fix it by hammering a small nail that slipped out and kept the curtain from sliding. Her lack of privacy made it difficult for my advocates to feel comfortable in the room.
Rarely would anyone introduce themselves when entering. A new resident or doctor would explain why they were there, but people from housekeeping, or pain management didn’t. When a woman came in, touched the IV and wrote down numbers, my two visitors stopped her and demanded to know who she is and why she didn’t introduce herself. Obviously embarrassed, she explained herself and apologized. It should never have to go that far.
As someone who has been an advocate at the bedside for approximately 40 patients in the last 4 years, I have never witnessed this sort of careless behavior. When I asked a nurse why, after I know that The Joint Commission was there just the week before (I heard staff talking) would they not check my name or arm band, introduce themselves to me or deliver my medications so I know what I am getting, one nurses response was, we know who you are, it’s not that busy here.
Fortunately, hand washing wasn’t the biggest issue. I watched as everyone coming and going used the wall hand sanitizer. When my advocate didn’t see the surgeon use it, he asked her to. She said she did already but would do it again.
Unfortunately, immediately following surgery it didn’t go as well which is probably why all the other incidents stay close at hand. The morning after surgery, two residents arrived and said they wanted to check the site of surgery. I asked them to wash their hands first. “I did” said the one who now had her fingers on my stomach. “And I showered this morning too if that helps”.
Yes, I am grateful to my outcome but nope, not a happy hello to my stay. We still have a long way to go.
Feel free to leave a comment. I have 4 more weeks to read them.
Tuesday, February 22, 2011
Wednesday, February 16, 2011
Choosing a Surgeon
How I Chose a Surgeon
Some people have asked me how I chose a surgeon. It isn’t easy, and the one I chose isn’t the one I might expect others to choose. Choosing a surgeon, like choosing a family healthcare provider is very personal.
I trusted a friend who runs a large surgical office. Though the surgeons she works for do not do the surgery I need, they work for the health system I trust. I chose the health system, or hospital, first. I needed to know that the leadership at this facility go to conferences and are involved in patient safety initiatives nationally. The leadership is on boards and involved with organizations that promote patient safety. This health system encourages patient participation. If something goes wrong, I am confident that this institution has had the training to disclose to my family and do what is right.
That is no excuse for my choosing a surgeon who is fairly new to her field. Her profile says that she has been licensed for three years and board certified in 2009. Another surgeon I saw for another opinion said she was doing this procedure for over ten years. “So why” asked a friend / colleague / surgeon who is 64 years old and has more experience than these two others put together, “would you use someone with such little experience?” “Because”, I explained, “I don’t want someone who has been trained with the dinosaurs”.
When physicians complain about change, and I hear the words “that’s the way we always did it” I fear that they are not willing to learn important things such as hand hygiene, time outs and communication. I fear that the “way we always did it” is outdated and possibly what has caused the patient safety problem in this country to begin with.
By using a younger surgeon, I am choosing someone who has been recommended, does not come with the “holier than though” attitude and maybe has been to some of the patient safety conferences that I have been to. Chances are, some of the other hospitals in town may not even know about them.
Some people have asked me how I chose a surgeon. It isn’t easy, and the one I chose isn’t the one I might expect others to choose. Choosing a surgeon, like choosing a family healthcare provider is very personal.
I trusted a friend who runs a large surgical office. Though the surgeons she works for do not do the surgery I need, they work for the health system I trust. I chose the health system, or hospital, first. I needed to know that the leadership at this facility go to conferences and are involved in patient safety initiatives nationally. The leadership is on boards and involved with organizations that promote patient safety. This health system encourages patient participation. If something goes wrong, I am confident that this institution has had the training to disclose to my family and do what is right.
That is no excuse for my choosing a surgeon who is fairly new to her field. Her profile says that she has been licensed for three years and board certified in 2009. Another surgeon I saw for another opinion said she was doing this procedure for over ten years. “So why” asked a friend / colleague / surgeon who is 64 years old and has more experience than these two others put together, “would you use someone with such little experience?” “Because”, I explained, “I don’t want someone who has been trained with the dinosaurs”.
When physicians complain about change, and I hear the words “that’s the way we always did it” I fear that they are not willing to learn important things such as hand hygiene, time outs and communication. I fear that the “way we always did it” is outdated and possibly what has caused the patient safety problem in this country to begin with.
By using a younger surgeon, I am choosing someone who has been recommended, does not come with the “holier than though” attitude and maybe has been to some of the patient safety conferences that I have been to. Chances are, some of the other hospitals in town may not even know about them.
Monday, February 14, 2011
Pre-Surgical Testing
My Day of Pre-Surgical Testing
I went for my pre-surgical testing. I was asked if I wanted my name called or would I like to use a number. It was a wonderful offer since because I am a private person, I didn’t want to run into people I know. I chose to be called by number.
I was handed a stack of forms to complete. I was not asked if I could read them or if, in fact I needed help. I have learned to always ask people if they need help writing, if they forgot their glasses or couldn’t see well. Reports are that as many as 90 million Americans have low literacy so the chance are that one of these people will be standing, at some point in front of this woman handing me the forms. But this hospital did not seem prepared to make me feel comfortable if I couldn’t read the forms. I may have sat in a corner signing for things I had no understanding.
After being called in, I was greeted by a young woman who sat with me and explained payment, insurance and some other incidentals. She was calm and made me feel that I was not a burden. In this private area I may have been able to tell this woman I couldn’t read or, I couldn’t understand what she was saying.
After a long wait, about 30 minutes, I was seen by a nurse practitioner. Because there were two women, I had to ask if one was in training. No explanation was given why one was going to watch my intake until I asked. I was never told that this may be an all -day event. Were I planning to go back to work or had other plans, I would have, at this point needed to cancel.
The nurse practitioner talked fast, and pushed papers in front of me to sign, barely giving me an opportunity to read them. I was sure to block out her continued questioning while I read the forms. She was eager for me to sign. I wasn’t sure if this was the way she was training the other woman, chatter the procedure, ask patient to sign, chatter the procedure, ask patient to sign. Never was she asking me if I had any questions or if I understood. Maybe I just looked like someone who would speak up if I needed to.
When I left, and was brought to the x-ray department, I waited another 45 minutes with only one other patient waiting. I assumed it was lunch time and we were just left there, but you would think, being left alone, in a strange place, at such a vulnerable time, one of the 4 or 5 women chatting about their family’s vacation may have explained what the long delay was. But, I had to assume that wasn’t their job.
I went for my pre-surgical testing. I was asked if I wanted my name called or would I like to use a number. It was a wonderful offer since because I am a private person, I didn’t want to run into people I know. I chose to be called by number.
I was handed a stack of forms to complete. I was not asked if I could read them or if, in fact I needed help. I have learned to always ask people if they need help writing, if they forgot their glasses or couldn’t see well. Reports are that as many as 90 million Americans have low literacy so the chance are that one of these people will be standing, at some point in front of this woman handing me the forms. But this hospital did not seem prepared to make me feel comfortable if I couldn’t read the forms. I may have sat in a corner signing for things I had no understanding.
After being called in, I was greeted by a young woman who sat with me and explained payment, insurance and some other incidentals. She was calm and made me feel that I was not a burden. In this private area I may have been able to tell this woman I couldn’t read or, I couldn’t understand what she was saying.
After a long wait, about 30 minutes, I was seen by a nurse practitioner. Because there were two women, I had to ask if one was in training. No explanation was given why one was going to watch my intake until I asked. I was never told that this may be an all -day event. Were I planning to go back to work or had other plans, I would have, at this point needed to cancel.
The nurse practitioner talked fast, and pushed papers in front of me to sign, barely giving me an opportunity to read them. I was sure to block out her continued questioning while I read the forms. She was eager for me to sign. I wasn’t sure if this was the way she was training the other woman, chatter the procedure, ask patient to sign, chatter the procedure, ask patient to sign. Never was she asking me if I had any questions or if I understood. Maybe I just looked like someone who would speak up if I needed to.
When I left, and was brought to the x-ray department, I waited another 45 minutes with only one other patient waiting. I assumed it was lunch time and we were just left there, but you would think, being left alone, in a strange place, at such a vulnerable time, one of the 4 or 5 women chatting about their family’s vacation may have explained what the long delay was. But, I had to assume that wasn’t their job.
Sunday, February 13, 2011
Sharing
The Advocate Listener
I am surprised how many people ask if my surgery is an “elective” procedure. I’m not sure why a woman would choose to have a hysterectomy unless the pain, discomfort or quality of life has diminished because of it. Do people ask if knee surgery is or gall bladder surgery is elective? I couldn’t even imagine asking someone if their nose job is a choice or liposuction is elective. Obviously, the person getting the surgery feels this is important, for whatever the reason.
In learning about empathy, we learn that being present and sometimes saying nothing is ok. Society hasn’t learned yet that we don’t have to compare our injuries or illnesses. It takes work to just be present for someone as they share something important. We want to show that we understand by explaining we have been their too. That’s not always necessary.
Expressing anxiety or fears over their surgery is supposed to help a patient feel they are not alone. But, everyone is different. My anxiety may not be because of the actual surgery but instead, being away from my children and home. While someone may want to downplay a patients fears with “don’t worry, you will be fine”, the listener has closed the door to what the patient needs to express to help relieve the anxiety.
Being the patient for a change has helped reinforce what I have been learning and teaching about communication. As a patient’s advocate – there is a strong need for being a strong listener. So much about patient’s safety is about communicating. Patient’s won’t always get those skills from their healthcare provider.
I am surprised how many people ask if my surgery is an “elective” procedure. I’m not sure why a woman would choose to have a hysterectomy unless the pain, discomfort or quality of life has diminished because of it. Do people ask if knee surgery is or gall bladder surgery is elective? I couldn’t even imagine asking someone if their nose job is a choice or liposuction is elective. Obviously, the person getting the surgery feels this is important, for whatever the reason.
In learning about empathy, we learn that being present and sometimes saying nothing is ok. Society hasn’t learned yet that we don’t have to compare our injuries or illnesses. It takes work to just be present for someone as they share something important. We want to show that we understand by explaining we have been their too. That’s not always necessary.
Expressing anxiety or fears over their surgery is supposed to help a patient feel they are not alone. But, everyone is different. My anxiety may not be because of the actual surgery but instead, being away from my children and home. While someone may want to downplay a patients fears with “don’t worry, you will be fine”, the listener has closed the door to what the patient needs to express to help relieve the anxiety.
Being the patient for a change has helped reinforce what I have been learning and teaching about communication. As a patient’s advocate – there is a strong need for being a strong listener. So much about patient’s safety is about communicating. Patient’s won’t always get those skills from their healthcare provider.
Thursday, February 10, 2011
My Own Surgery
Planning for My Own Surgery
As I plan for my own surgery, it has given me yet another aspect of healthcare. I get to see some of the details advocates for others may often forget about. I am a very private person but thought it might be helpful to tell my own story as I move forward. And, of course to look at it from the eyes of the patient will be helpful in many ways to my work.
I am in the business of patient’s safety, for the simple reason healthcare is often not safe, I have my doubts about entering a hospital and subjecting myself to a knife, while asleep to remove the same organs which have given me my wonderful children. Unfortunately, almost my entire adult life has been surrounded by only the less positive outcomes of healthcare. Though a realist, I do know that there are hundreds of thousands of surgeries that have great outcomes. I just don’t get to hear about them nearly enough.
Errors can start anywhere, such as the paperwork I received saying I will be admitted 2 days after my surgery is to take place. I didn’t call to question this because I knew I would get a series of phone calls from the surgeon’s office. But, when I did mention it, instead of an apology I received a comment “Oh, you know when the surgery is”. Because it was changed, that date was never on the form, and she was not planning to send me a correction. “Just change it on your sheet” she told me.
As I plan for my own surgery, it has given me yet another aspect of healthcare. I get to see some of the details advocates for others may often forget about. I am a very private person but thought it might be helpful to tell my own story as I move forward. And, of course to look at it from the eyes of the patient will be helpful in many ways to my work.
I am in the business of patient’s safety, for the simple reason healthcare is often not safe, I have my doubts about entering a hospital and subjecting myself to a knife, while asleep to remove the same organs which have given me my wonderful children. Unfortunately, almost my entire adult life has been surrounded by only the less positive outcomes of healthcare. Though a realist, I do know that there are hundreds of thousands of surgeries that have great outcomes. I just don’t get to hear about them nearly enough.
Errors can start anywhere, such as the paperwork I received saying I will be admitted 2 days after my surgery is to take place. I didn’t call to question this because I knew I would get a series of phone calls from the surgeon’s office. But, when I did mention it, instead of an apology I received a comment “Oh, you know when the surgery is”. Because it was changed, that date was never on the form, and she was not planning to send me a correction. “Just change it on your sheet” she told me.
Tuesday, January 25, 2011
Sermon, Caring in a Crisis
I never thought of patient safety as a spiritual journey but it can very well be. I spoke last weekend at the First Universalist Church of Southold and my sermon was called Caring in a Crisis, How we can step up to help each other. Following, is part of my sermon after I told stories of people’s lives who were tragically taken because of their medical care.
"They may all be alive today if the healthcare providers who cared for them took another road in their care. If they were more careful, more thorough or even more knowledgeable. No one meant harm, but harm from medical care is the 8th leading cause of death in this country. More people die from medical errors in hospitals than auto accidents, breast cancer and AIDS combined.
Patient safety, only in the last 10 years is something that the public has become aware of. Hospitals and medical professionals have been aware of patient safety for many years.
As early as the late 1900’ Ernest Amory Codman was known for pioneering what is known as outcomes management in patient care. Codman was the first American doctor to follow the progress of patients through their recoveries. Each patient was followed up on for at least one year to observe long-term outcomes. He believed that all of the results should be made public so that patients could be guided in their choices of physicians and hospitals.
In 1855 it is reported that Florence Nightingale recognized that soldiers were dying from unsanitary conditions and she paved the way for sanitary conditions in hospitals.
In the late 1840's, Dr. Ignaz Semmelweis was an assistant in the maternity wards of a Vienna hospital. There he observed that the mortality rate in a delivery room staffed by medical students was up to three times higher than in a second delivery room staffed by midwives.
Students were coming straight from the autopsy room to the delivery room. He thought that the students might be carrying the infection from their dissections to birthing mothers. He ordered doctors and medical students to wash their hands with a chlorinated solution before examining women in labor. The mortality rate in his maternity wards eventually dropped to less than one percent.
Now, in the year 2011, the Centers for Disease Control reports that as many as 100,000 people die from hospital acquired infections and as many as 2 million patients will be infected by a hospital acquired infection this year and in years passed.
So what can we do about it? Talk about it for one. By acknowledging this problem, like any problem we can start to fix it. I dream about conversations about patient safety to be similar to families talking about breast cancer, seat belt safety or safe sex practices.
How could something so deadly as medical errors and hospital acquired infections be so out of control? Patients and their families only recently have been involved in what’s now called patient centered care and the patient safety movement.
I began my personal journey to patient safety many years ago when my only child at the time went for what was considered a routine tonsillectomy. Following his procedure he bled for a week and I brought him to different doctors and emergency rooms. Each doctor they said not to worry, he will be fine. 8 days later my son was to die at home, in my arms, a statistic that no one at the time knew existed. He bled to death from a tonsillectomy.
My search for answers on how a child could slip through the system led me years later to national patient safety conferences by the medical societies and hospital associations. The medical professionals knew there was a problem, they just didn’t know, at the time that many patients also knew. I was going to help bridge that gap.
And now, today, ten years later, healthcare providers have started including patients in patient safety by giving us tips on what we can do.
One of them is to tell our doctors to wash their hands. With the numbers I just quoted, this sounds a bit unreasonable doesn’t it?
It’s a start – its not the solution.
As an adult, don’t you feel it awkward to be undressed on a table about to be checked by the doctor and we are supposed to tell him or her to wash? Isn’t this something that we are taught as young children? Wash before eating, before touching your food and now, we have to tell an adult to wash before treating us?
But, the fact is they don’t always wash. They don’t wash before touching us after touching a doorknob or the clip board or shaking our hand. And yet we know it is supposed to be done and ironically - so do they. So gentle reminders can be seen to us, the patient, as a way to keep us safe and hopefully infection free. It has to be done or we may not be safe!
I sometimes wonder why I feel so disrespected when someone in a white coat doesn’t wash. He knows that infections are a problem, why would he or she then purposely put my life in jeopardy by not using a simple safety technique like hand washing?
But hand-washing is a small part of patient safety. Just as serious is diagnostic errors, medication errors and even falls in hospitals that cost patient’s their lives.
PULSE of NY, is the first grassroots patient safety organization which started on Long Island in 1997 we are credited in books and articles for helping to start the patient safety movement giving the patient a voice in 1996 – We started at the South Nassau UU Congregation as a support group for medical injury survivors and still meet there regularly to hold workshops and programs.
So, this small group of patient safety advocates which include medical professionals and community members decided we would develop a program that would encourage the family or friends of the patient, to do just that – speak up.
Patients are supposed to have their questions ready. But when the doctor says “You need surgery” or “you have diabetes” or cancer, we can’t as the patient, possibly know what questions we are supposed to be asking. Our heads will spin with thoughts, feelings and planning and easily forget what we are supposed to ask.
Having a trusted friend or family member in the room and hearing the news with you, or at least immediately following it can help you sort out information, gather your thoughts or share in the shock.
You may be needed to drive her children to school, do the shopping and cook some meals. If your congregation is anything like mine, there’s a whole group ready to help. We can offer sympathy or should it be empathy. What is the difference?
Kerry O’Connell, a colleague of mine involved in the organization called Compassion in Healthcare, a world wide organization located in New Zealand describes the differences in Sympathy and Empathy this way:
Sympathy Can be purchased at Hallmark, Empathy, Cannot be purchased at any price,
Sympathy Given by Many, Empathy Craved by Many,
Sympathy Minimal emotional investment by the giver, Empathy Requires great emotional revelation by the giver,
Sympathy Leaves you indifferent, Empathy Leaves you warm,
Sympathy Brief pain relief, Empathy Lasting Healing,
Sympathy Quickly Forgotten, Empathy Relished Forever,
Sympathy Understood, Empathy Experienced,
Sympathy Offered, Empathy Shared,
Sympathy Abundant, Empathy Most Rare,
Sympathy Expected, Empathy Unexpected,
Sympathy Learned, Empathy Intuitive,
Sympathy Easy, Empathy Difficult,
Sympathy Acknowledges, Empathy Accepts,
Sympathy Mostly Talking, Empathy Mostly
Listening,
Sympathy Tries to solve, Empathy Relates,
Too much Sympathy can be annoying, Empathy Can’t have enough,
There is a place for people to offer sympathy to one another and a place to offer empathy. But not everyone wants to offer sympathy or empathy. Some people, I being one of them, want to spring into action. I usually can’t sit and feel sorry for you. Give me a job to do to make me feel like I am doing something.We, as a UU community are often willing and ready to be given our responsibilities to help others in need.
Let’s take the 32 year old member of the congregation who has just told her few closest friends that she will need a hysterectomy and has a 2 year old child bouncing around the house.
Most people will be thinking about how to help her after her surgery. Food will be delivered and offers to babysit that little darling will pour in. But what about planning for the surgery? Whether she has a husband or partner, there are so many things we, as a community can do to help her prepare.
Ask if she needs help researching her doctor, the best hospital to use or what procedure is best for her. You never want to tell her about your surgeries, your friends hysterectomy or what hospital she should use. Even at the so called “best” hospitals, bad things can happen. You want to research the information that’s available.
Offer to look into insurance, if she needs that, or a doctor who may give a second opinion – if she wants to. Ask about offering to sort out medical records, chart information or accompany her to the doctor’s visits so you can take notes.
Offer to list her medications, vitamins and any supplements she may take. Names of family and friends to call following surgery, a list of all her doctors, allergies and surgeries she has ever had. Help with advanced directives.
If she tells you something doesn’t seem right, no one is listening or the care she is receiving seems substandard – please don’t use those words that can be deadly – “don’t worry”. Dig deeper. Chances are something is wrong!
As one person wrote to me after we sat at a diner and made the lists; “Thank you, I have used the lists we made over and over again for all my treatment”.
Another wrote about her advocate that I trained “As a recent widow, I was overwhelmed by the diagnosis and feeling alone and very vulnerable. My advocate accompanied me to my pre-surgical doctor visits and helped me to ask the questions I had discussed with her beforehand. She calmly recorded the various treatment options as they were proposed and was able to discuss them again with me later as I mulled over which treatment path I would take.”
While someone is in the hospital, for those of us who really can’t stay away, but feel awkward standing over the bedside looking at our sick friend in her pajamas, bring a gift basket of antibacterial hand and body wipes, antibacterial wipes for the room and a box of chocolates for the nurses. Then, when visiting wash all door knobs, bedrail, tv remote and nurses call bell. Leave the chocolates in the room so nurses and nurse’s aids and housekeeping must come in to take a treat. Your friends will be flocked by professional care.Ask if the patient has all the information he or she wants from the nurses or doctor. If not, take some notes and help the patient get the information. You can help build that bridge for the patient so he or she can concentrate on getting well.
So, as we move forward in a world willing to help each other, don’t forget that there are many ways to help and take action when someone else may need us. I hope today I gave you some more tools to help.
Thank you. "
"They may all be alive today if the healthcare providers who cared for them took another road in their care. If they were more careful, more thorough or even more knowledgeable. No one meant harm, but harm from medical care is the 8th leading cause of death in this country. More people die from medical errors in hospitals than auto accidents, breast cancer and AIDS combined.
Patient safety, only in the last 10 years is something that the public has become aware of. Hospitals and medical professionals have been aware of patient safety for many years.
As early as the late 1900’ Ernest Amory Codman was known for pioneering what is known as outcomes management in patient care. Codman was the first American doctor to follow the progress of patients through their recoveries. Each patient was followed up on for at least one year to observe long-term outcomes. He believed that all of the results should be made public so that patients could be guided in their choices of physicians and hospitals.
In 1855 it is reported that Florence Nightingale recognized that soldiers were dying from unsanitary conditions and she paved the way for sanitary conditions in hospitals.
In the late 1840's, Dr. Ignaz Semmelweis was an assistant in the maternity wards of a Vienna hospital. There he observed that the mortality rate in a delivery room staffed by medical students was up to three times higher than in a second delivery room staffed by midwives.
Students were coming straight from the autopsy room to the delivery room. He thought that the students might be carrying the infection from their dissections to birthing mothers. He ordered doctors and medical students to wash their hands with a chlorinated solution before examining women in labor. The mortality rate in his maternity wards eventually dropped to less than one percent.
Now, in the year 2011, the Centers for Disease Control reports that as many as 100,000 people die from hospital acquired infections and as many as 2 million patients will be infected by a hospital acquired infection this year and in years passed.
So what can we do about it? Talk about it for one. By acknowledging this problem, like any problem we can start to fix it. I dream about conversations about patient safety to be similar to families talking about breast cancer, seat belt safety or safe sex practices.
How could something so deadly as medical errors and hospital acquired infections be so out of control? Patients and their families only recently have been involved in what’s now called patient centered care and the patient safety movement.
I began my personal journey to patient safety many years ago when my only child at the time went for what was considered a routine tonsillectomy. Following his procedure he bled for a week and I brought him to different doctors and emergency rooms. Each doctor they said not to worry, he will be fine. 8 days later my son was to die at home, in my arms, a statistic that no one at the time knew existed. He bled to death from a tonsillectomy.
My search for answers on how a child could slip through the system led me years later to national patient safety conferences by the medical societies and hospital associations. The medical professionals knew there was a problem, they just didn’t know, at the time that many patients also knew. I was going to help bridge that gap.
And now, today, ten years later, healthcare providers have started including patients in patient safety by giving us tips on what we can do.
One of them is to tell our doctors to wash their hands. With the numbers I just quoted, this sounds a bit unreasonable doesn’t it?
It’s a start – its not the solution.
As an adult, don’t you feel it awkward to be undressed on a table about to be checked by the doctor and we are supposed to tell him or her to wash? Isn’t this something that we are taught as young children? Wash before eating, before touching your food and now, we have to tell an adult to wash before treating us?
But, the fact is they don’t always wash. They don’t wash before touching us after touching a doorknob or the clip board or shaking our hand. And yet we know it is supposed to be done and ironically - so do they. So gentle reminders can be seen to us, the patient, as a way to keep us safe and hopefully infection free. It has to be done or we may not be safe!
I sometimes wonder why I feel so disrespected when someone in a white coat doesn’t wash. He knows that infections are a problem, why would he or she then purposely put my life in jeopardy by not using a simple safety technique like hand washing?
But hand-washing is a small part of patient safety. Just as serious is diagnostic errors, medication errors and even falls in hospitals that cost patient’s their lives.
PULSE of NY, is the first grassroots patient safety organization which started on Long Island in 1997 we are credited in books and articles for helping to start the patient safety movement giving the patient a voice in 1996 – We started at the South Nassau UU Congregation as a support group for medical injury survivors and still meet there regularly to hold workshops and programs.
So, this small group of patient safety advocates which include medical professionals and community members decided we would develop a program that would encourage the family or friends of the patient, to do just that – speak up.
Patients are supposed to have their questions ready. But when the doctor says “You need surgery” or “you have diabetes” or cancer, we can’t as the patient, possibly know what questions we are supposed to be asking. Our heads will spin with thoughts, feelings and planning and easily forget what we are supposed to ask.
Having a trusted friend or family member in the room and hearing the news with you, or at least immediately following it can help you sort out information, gather your thoughts or share in the shock.
You may be needed to drive her children to school, do the shopping and cook some meals. If your congregation is anything like mine, there’s a whole group ready to help. We can offer sympathy or should it be empathy. What is the difference?
Kerry O’Connell, a colleague of mine involved in the organization called Compassion in Healthcare, a world wide organization located in New Zealand describes the differences in Sympathy and Empathy this way:
Sympathy Can be purchased at Hallmark, Empathy, Cannot be purchased at any price,
Sympathy Given by Many, Empathy Craved by Many,
Sympathy Minimal emotional investment by the giver, Empathy Requires great emotional revelation by the giver,
Sympathy Leaves you indifferent, Empathy Leaves you warm,
Sympathy Brief pain relief, Empathy Lasting Healing,
Sympathy Quickly Forgotten, Empathy Relished Forever,
Sympathy Understood, Empathy Experienced,
Sympathy Offered, Empathy Shared,
Sympathy Abundant, Empathy Most Rare,
Sympathy Expected, Empathy Unexpected,
Sympathy Learned, Empathy Intuitive,
Sympathy Easy, Empathy Difficult,
Sympathy Acknowledges, Empathy Accepts,
Sympathy Mostly Talking, Empathy Mostly
Listening,
Sympathy Tries to solve, Empathy Relates,
Too much Sympathy can be annoying, Empathy Can’t have enough,
There is a place for people to offer sympathy to one another and a place to offer empathy. But not everyone wants to offer sympathy or empathy. Some people, I being one of them, want to spring into action. I usually can’t sit and feel sorry for you. Give me a job to do to make me feel like I am doing something.We, as a UU community are often willing and ready to be given our responsibilities to help others in need.
Let’s take the 32 year old member of the congregation who has just told her few closest friends that she will need a hysterectomy and has a 2 year old child bouncing around the house.
Most people will be thinking about how to help her after her surgery. Food will be delivered and offers to babysit that little darling will pour in. But what about planning for the surgery? Whether she has a husband or partner, there are so many things we, as a community can do to help her prepare.
Ask if she needs help researching her doctor, the best hospital to use or what procedure is best for her. You never want to tell her about your surgeries, your friends hysterectomy or what hospital she should use. Even at the so called “best” hospitals, bad things can happen. You want to research the information that’s available.
Offer to look into insurance, if she needs that, or a doctor who may give a second opinion – if she wants to. Ask about offering to sort out medical records, chart information or accompany her to the doctor’s visits so you can take notes.
Offer to list her medications, vitamins and any supplements she may take. Names of family and friends to call following surgery, a list of all her doctors, allergies and surgeries she has ever had. Help with advanced directives.
If she tells you something doesn’t seem right, no one is listening or the care she is receiving seems substandard – please don’t use those words that can be deadly – “don’t worry”. Dig deeper. Chances are something is wrong!
As one person wrote to me after we sat at a diner and made the lists; “Thank you, I have used the lists we made over and over again for all my treatment”.
Another wrote about her advocate that I trained “As a recent widow, I was overwhelmed by the diagnosis and feeling alone and very vulnerable. My advocate accompanied me to my pre-surgical doctor visits and helped me to ask the questions I had discussed with her beforehand. She calmly recorded the various treatment options as they were proposed and was able to discuss them again with me later as I mulled over which treatment path I would take.”
While someone is in the hospital, for those of us who really can’t stay away, but feel awkward standing over the bedside looking at our sick friend in her pajamas, bring a gift basket of antibacterial hand and body wipes, antibacterial wipes for the room and a box of chocolates for the nurses. Then, when visiting wash all door knobs, bedrail, tv remote and nurses call bell. Leave the chocolates in the room so nurses and nurse’s aids and housekeeping must come in to take a treat. Your friends will be flocked by professional care.Ask if the patient has all the information he or she wants from the nurses or doctor. If not, take some notes and help the patient get the information. You can help build that bridge for the patient so he or she can concentrate on getting well.
So, as we move forward in a world willing to help each other, don’t forget that there are many ways to help and take action when someone else may need us. I hope today I gave you some more tools to help.
Thank you. "
##
The reading, "What's in a Word" came from Compassion in Healthcare
Tuesday, January 4, 2011
Ted
About Ted
As Ted got older, and reached his late teens, something started happening. We knew he was always on the thin side, the opposite of his huskier brother, and he had trouble with high ceilings, too much noise and bright lights. We all just thought it was quirkiness about Ted that made him different, and in need of some extra attention.
In the last couple of years, Ted struggled to walk. His mom took him for physical therapy and had him diagnosed with tight hamstring muscles. He had a heart arrhythmia and spent the day as an outpatient receiving, at just 18 years old, a heart ablation. His eyes were troublesome and his visited two ophthalmologists who sent him for eye exercises. Then his speech started slurring and his mom realized that there were too many things happening. She saw two different neurologists who would send him for a battery of tests.
I sat with them as a doctor spoke about doing spinal and other invasive procedures. He wanted to “rule out” certain diseases – but why, I wondered, can’t someone just figure out what this is?
Ted’s mom, though exhausted from working full time and visiting doctor after doctor and bringing Ted for eye therapy, physical therapy and taking him out nightly for walks because of his fear that his legs would give out, wouldn’t give up. The final doctor, a neurologist did a blood test, and found that Ted has Mitochondrial Disease which results from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. When they fail, less and less energy is generated within the cell.
Ted’s mom and I talk about why it took so long for Ted to be diagnosed. Was he being “mis” diagnosed? Was there a breakdown in communication? Why couldn’t the ophthalmologist find the problem or the first or second neurologist? There is so little that can be done for Ted. He works hard to keep walking and is determined to stay out of a wheelchair. He is a brave young man who is fighting with every breath he takes. Ted wants to be independent but accepts help, and even seems to, at times, enjoy the attention. It makes it easy to love him. He allows us to love him. He has taken up a piece of my heart with every deep conversation about his future he allows me to look deeper into his soul as well as my own.
I keep thinking that it was his mom who pursued a diagnosis. He would have been dropped if not for the work she did to keep records together and compare notes. Ted’s pediatrician didn’t do that. It is up to us, the patient and the patient’s family or even friends to step up and help or we would all get lost in the system that would gobble us up and spit us out like another number we pull out of the machine at the deli counter.
 |
| Ted |
I have known Ted for most of his life. As a young boy, he was adorable with blond hair and beautiful blue eyes. He was always the quiet one between him and his full of life and mischievous brother, but something would happen to Ted when he would get in front of a microphone. He would sing, recite his own poetry or tell wonderful stories. Ted would light up a room with his sharp wit and charming personality. Ted’s mom, one of my dearest and closest friends raised the two boys on her own. I always admired how she held down enough jobs to just make ends meet but always had time to help someone else in need.
In the last couple of years, Ted struggled to walk. His mom took him for physical therapy and had him diagnosed with tight hamstring muscles. He had a heart arrhythmia and spent the day as an outpatient receiving, at just 18 years old, a heart ablation. His eyes were troublesome and his visited two ophthalmologists who sent him for eye exercises. Then his speech started slurring and his mom realized that there were too many things happening. She saw two different neurologists who would send him for a battery of tests.
I sat with them as a doctor spoke about doing spinal and other invasive procedures. He wanted to “rule out” certain diseases – but why, I wondered, can’t someone just figure out what this is?
Ted’s mom, though exhausted from working full time and visiting doctor after doctor and bringing Ted for eye therapy, physical therapy and taking him out nightly for walks because of his fear that his legs would give out, wouldn’t give up. The final doctor, a neurologist did a blood test, and found that Ted has Mitochondrial Disease which results from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. When they fail, less and less energy is generated within the cell.
Ted’s mom and I talk about why it took so long for Ted to be diagnosed. Was he being “mis” diagnosed? Was there a breakdown in communication? Why couldn’t the ophthalmologist find the problem or the first or second neurologist? There is so little that can be done for Ted. He works hard to keep walking and is determined to stay out of a wheelchair. He is a brave young man who is fighting with every breath he takes. Ted wants to be independent but accepts help, and even seems to, at times, enjoy the attention. It makes it easy to love him. He allows us to love him. He has taken up a piece of my heart with every deep conversation about his future he allows me to look deeper into his soul as well as my own.
I keep thinking that it was his mom who pursued a diagnosis. He would have been dropped if not for the work she did to keep records together and compare notes. Ted’s pediatrician didn’t do that. It is up to us, the patient and the patient’s family or even friends to step up and help or we would all get lost in the system that would gobble us up and spit us out like another number we pull out of the machine at the deli counter.
Ted is teaching me about love and about life and about what is really important. The people who come through our lives each day all carry baggage but I find my mind constantly distracted by Ted’s future and what tomorrow will bring.
Meet Ted Here
Thursday, December 9, 2010
Patient "Activist" Meeting
An Invitation to Meet With Patient "Activists"
Alicia Cole has also become an expert in hospital acquired infections after battling her own for years. She formed Alliance for Safety Awareness for Patients and many people get support and information from her organization.
And of course Trisha Torey from Every Patient’s Advocate has helped to keep many of us connected.
Many of us keep blogs such as Ken Farberstein who encourages story telling.
Some have written books such as;
Bart Windrum who wrote Notes From the Waiting Room.
Or Jari Holland Buck who wrote the Hospital Stay Handbook.
Dr. Cari Oliver wrote The Cautious Patient (and underwrote much of the meeting).
Patty Skolnik started Citizens for Patient Safety in Colorado travels the country lobbying for all our safety following the death of her only child, Michael. We can all learn something from her professionalism in this field.
Lori Nerbonne founded New Hampshire Patient Voices after numerous flaws in the healthcare system killed her mother.
I didn’t get to spend nearly enough time with my friend Kathy Clark of Servant Lawyership.
I was so happy to finally meet Dianne Parker who has shared her husband’s story about his untimely death from a hospital acquired infection.
It's always good to see Cathy Reuter from Surgicalfire.org.
It was actually the first time all PULSE representatives were together, Doug Hall from Florida and Jennifer Dingman, Colorado and myself.
 |
| Trisha Torrey, Every Patients Advocate and Ilene Corina, PULSE of NY |
I was chosen one of 50 people to attend the Institute of Healthcare Improvement conference and meet with 50 patient safety “activists” from around the country. It was both a humbling but exciting adventure. I heard there were 92 applicants, 50 were chosen and I know of at east 10 people who never even applied. There are many of us out there!
I believe sharing was the most common thread. Many people who have had bad outcomes want, and need to share their stories. They do this through their work and reach more people. I was impressed with the many professional groups that were started out of their grief. Just to mention some who were impressive;
Honoreform.org from Nebraska is dedicated to protecting patients through safeguarding the medical injection process.
The Safe Care Campaign started by the Nahum family has become a trusted expert in infection control and works closely with the CDC.
 |
| Alicia Cole ASAP, Ilene Corina, PULSE and Linda Kenney, MITSS |
I was only there for the Saturday night meeting and Sunday workshop that we all had an opportunity to meet each other, get to know each other and share some of our dreams and sorrows that brought us together. It seems that at some point, all of our paths have crossed and we knew of each other or knew each other well. Our goal – to decide on a goal……
I believe sharing was the most common thread. Many people who have had bad outcomes want, and need to share their stories. They do this through their work and reach more people. I was impressed with the many professional groups that were started out of their grief. Just to mention some who were impressive;
Honoreform.org from Nebraska is dedicated to protecting patients through safeguarding the medical injection process.
The Safe Care Campaign started by the Nahum family has become a trusted expert in infection control and works closely with the CDC.
Alicia Cole has also become an expert in hospital acquired infections after battling her own for years. She formed Alliance for Safety Awareness for Patients and many people get support and information from her organization.
And of course Trisha Torey from Every Patient’s Advocate has helped to keep many of us connected.
Many of us keep blogs such as Ken Farberstein who encourages story telling.
Some have written books such as;
Bart Windrum who wrote Notes From the Waiting Room.
Or Jari Holland Buck who wrote the Hospital Stay Handbook.
Dr. Cari Oliver wrote The Cautious Patient (and underwrote much of the meeting).
Patty Skolnik started Citizens for Patient Safety in Colorado travels the country lobbying for all our safety following the death of her only child, Michael. We can all learn something from her professionalism in this field.
Lori Nerbonne founded New Hampshire Patient Voices after numerous flaws in the healthcare system killed her mother.
I didn’t get to spend nearly enough time with my friend Kathy Clark of Servant Lawyership.
I was so happy to finally meet Dianne Parker who has shared her husband’s story about his untimely death from a hospital acquired infection.
It's always good to see Cathy Reuter from Surgicalfire.org.
It was actually the first time all PULSE representatives were together, Doug Hall from Florida and Jennifer Dingman, Colorado and myself.
 |
| Doug Hall, Ilene Corina and Jeni Dingman PULSE |
I was glad we got to laugh a little, cry a little and recognize that although we come from different places in pain, in time and in demographics, we are all joined at the heart because of our pain, lack of trust and / or anger because of the people and places we trusted, that ultimately caused harm. I am grateful for my new, and old friends.
Saturday, December 4, 2010
Communication is Critical
Communication
It happened again, someone is “reading with an attitude”. I call it that because that’s what happened when someone reads something, and then interjects their own emotions into it. Read this sentence without reading any words stronger than another; “She never checked the closet”. Now read the same sentence and emphasize the words “never” and “closet”. Seems kind of accusatory, no?
I use this as part of my Critical Communication training. This is communication that includes nonverbal conversation. Wars can be started over how something is perceived. Friendships lost and business deals can go bad. I like to “assume good intentions” when I read something. It is often better that we read everything flat, with no emotion and assume the sender means well. It’s easier to get something out of a correspondence when we aren’t putting emotions into it.
Making meatloaf is part of the critical communication training. How we hear things, read things and of course how we present ourselves, especially under stress, something that happens easily when being diagnosed with an illness or just being intimidated in a doctor’s office. Stop and think how other’s may perceive your e-mails or letters when writing and then when you receive something questionable, assume good intentions.
It happened again, someone is “reading with an attitude”. I call it that because that’s what happened when someone reads something, and then interjects their own emotions into it. Read this sentence without reading any words stronger than another; “She never checked the closet”. Now read the same sentence and emphasize the words “never” and “closet”. Seems kind of accusatory, no?
I use this as part of my Critical Communication training. This is communication that includes nonverbal conversation. Wars can be started over how something is perceived. Friendships lost and business deals can go bad. I like to “assume good intentions” when I read something. It is often better that we read everything flat, with no emotion and assume the sender means well. It’s easier to get something out of a correspondence when we aren’t putting emotions into it.
Making meatloaf is part of the critical communication training. How we hear things, read things and of course how we present ourselves, especially under stress, something that happens easily when being diagnosed with an illness or just being intimidated in a doctor’s office. Stop and think how other’s may perceive your e-mails or letters when writing and then when you receive something questionable, assume good intentions.
Monday, November 29, 2010
The TSA and HIPAA
The TSA is looking at us through our clothing and / or touching our bodies outside of our clothing, to see if we have weapons and / or explosive devices. I personally don’t care. Since having three babies, multiple pregnancies and lots of complications, I am basically immune to being looked at by strangers who probably could care less about what I look like naked unless of course there is something there that they are looking for. I feel very safe when I fly now.
The problem is not that they are looking at us, the problem is how we are treated, as human beings. This can be especially stressful for transgender people. Transgender being an umbrella term for people whose gender identity or gender expression differs from what they present. Working closely, the last year with transgender patients, I have learned that many transgender people don’t want to acknowledge their own body, why should they allow someone else to acknowledge it? Many transgender patients avoid medical care altogether to avoid this inner turmoil. Avoiding care becomes dangerous to anyone who needs to see a medical professional. But would they, or should they have to give up flying for this reason? I don’t think so.
I am not sure what the training is with the TSA but I do know that people in healthcare go for training in privacy. HIPAA has become a common term used in healthcare to keep lips sealed but I guarantee you many people don’t even know what it is used for. We do know that in medical treatment, our privacy is protected. Why then aren’t TSA employees given the same training in privacy and courtesy?
Training can be simple, talk to people about their issues and concerns about being groped or viewed. Learn about the person as a person, not just a number. Hospitals are being pressured to focus on “patient centered care”, viewing the patient as a person. It is not time consuming but it is a different way of working and training. I’m not saying that a TSA employee has to take a customer out for dinner and get to know them, but they should be taught to treat each flyer as they would want their own mother or sister treated. When famous people go for surgery, have a baby or are treated by a medical professional, we can be assured that the information will be protected and in most cases, the patient will be treated respectfully.
Medical professionals will someday be patients and want to be treated with dignity and respect. Unlike airline employees who fly and are seen with their full uniform and treated with courtesy as they go through the scanner, medical professionals who are hospitalized are forced to wear the same exposing garments as us plain folks. Maybe we should start putting TSA employees through scanners too for the public to view.
The problem is not that they are looking at us, the problem is how we are treated, as human beings. This can be especially stressful for transgender people. Transgender being an umbrella term for people whose gender identity or gender expression differs from what they present. Working closely, the last year with transgender patients, I have learned that many transgender people don’t want to acknowledge their own body, why should they allow someone else to acknowledge it? Many transgender patients avoid medical care altogether to avoid this inner turmoil. Avoiding care becomes dangerous to anyone who needs to see a medical professional. But would they, or should they have to give up flying for this reason? I don’t think so.
I am not sure what the training is with the TSA but I do know that people in healthcare go for training in privacy. HIPAA has become a common term used in healthcare to keep lips sealed but I guarantee you many people don’t even know what it is used for. We do know that in medical treatment, our privacy is protected. Why then aren’t TSA employees given the same training in privacy and courtesy?
Training can be simple, talk to people about their issues and concerns about being groped or viewed. Learn about the person as a person, not just a number. Hospitals are being pressured to focus on “patient centered care”, viewing the patient as a person. It is not time consuming but it is a different way of working and training. I’m not saying that a TSA employee has to take a customer out for dinner and get to know them, but they should be taught to treat each flyer as they would want their own mother or sister treated. When famous people go for surgery, have a baby or are treated by a medical professional, we can be assured that the information will be protected and in most cases, the patient will be treated respectfully.
Medical professionals will someday be patients and want to be treated with dignity and respect. Unlike airline employees who fly and are seen with their full uniform and treated with courtesy as they go through the scanner, medical professionals who are hospitalized are forced to wear the same exposing garments as us plain folks. Maybe we should start putting TSA employees through scanners too for the public to view.
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