Sunday, December 28, 2008
With 11 other community members, I gave testimony about how I see health care in America needs to improve. Not by continuing to give money to hospitals and health systems but instead, to grassroots organizations that can focus on making sure their constituency are treated by medical professionals who are following best practices. Although I am skeptical that my testimony means anything to anyone, I do think that Commissioner Chaudhry may be one of those miracle finds we often look for in the world of grassroots advocacy. Following is my testimony. Please feel free to comment.
Thank you for the opportunity to address this topic near and dear to my heart.
My name is Ilene Corina, I have lived on Long Island my whole life. My parents live here, my friends and family live here and I am raising my children here.
I want to first share with you my experience in patient safety. I am a founder and the president of PULSE of NY (1) a grassroots patient safety organization offering patient safety education to the community and support for the survivors of medical injury and unplanned outcomes in healthcare. PULSE has chapters in 3 other states with representation throughout the country (2) I am also a board member of the National Patient Safety Foundation (3) (4) and co-chaired their patient and family advisory council from 2002-2006 (5). I am on my second term as a board member of the Joint Commission which accredits over 15,000 healthcare organizations and programs in the United States.(6) .
My interest in patient safety started when my only child – at the time, bled for 8 days following a tonsillectomy. After repeated trips to doctor’s offices and emergency rooms I was sent away and told “don’t worry” until one week following surgery my son died. The autopsy revealed that he died as a direct result from his surgery. A preventable medical error.
I was devastated over his death, but on top of that that no one asked me what I thought could have been done differently so this would never happen to another family. I still have never learned what happened.
Years later I gave birth to a child born at 23 weeks gestation and spent 5 months with him in neonatal ICU learning how to partner in his care, advocating for him and I started to understand the complexity of the healthcare system. He is now a perfectly healthy 15 year old. I have seen the best and the worst of healthcare.
My interest in patient safety peaked in 1999 when I became involved in the National Patient Safety Foundation which was founded by the American Medical Association because of the rising concerns over preventable medical errors. About the same time the Institute of Medicine Report was released that as many as 98,000 people die in hospitals each year from preventable medical errors.(7)
I realized that my son was not counted - he died at home.
In July 2006 another report was released by the IOM that as many as 1.5 million people are injured by medication errors each year. (8) This report received approximately 1/8 of a page in our local newspaper.
Here are my recommendations:
We need legislation and funding for patient safety initiatives directly addressing the patient and families role in patient safety.
Patient safety education should begin in high school. Teaching young people about medication safety, infections and communication between patient and healthcare providers. Teaching young people about advocating for themselves when they go off to college, how to keep records of their medical tests, medications and stay safe using respect and partnership when hospitalized. Give them the tools to become participants in their care early in life and advocates for their families later in life..
Require all disease specific organizations are teaching patient safety. Grants need to be made available to grassroots organizations at every level to include patient safety in their community outreach. Patient safety is taught at a national level – why not local?
Small group educational programs: The Agency for Healthcare Research and Quality says that “ The single most important way you can help to prevent errors is to be an active member of your health care team.” (9) Hospitals put literature in admissions packets to encourage patients to be participants. But 90 million American adults show some form of low literacy (10). So who is reading this information and when are they reading it?
We need to teach patient safety in the community the same as teaching about high blood pressure, eating right and seat belt and child seat safety.
Develop public service announcements, which PULSE has produced many of, and literature should be in the doctor’s offices and clinics before the patient ever gets to the hospital.
Workers who use Family Medical Leave should be trained to be family advocates and learn to help prevent infections, medication errors and keep accurate records which done correctly can improve lost work time.
The culture needs to be that signs are prominently displayed in the hospital rooms encourage patient to ask for their ID to be checked and the dose of medication questioned ……… all potential errors – completely preventable.
Legislation must be passed that funding which is continually pumped into the healthcare system to research and study patient safety will go into community education. Because when it comes to measurement, one is a number.
And finally when there is an unplanned outcome, patients and their families need to be a voice in future prevention. A root cause analysis without the patient’s perspective is only half way done. We need to build a bridge back to the medical team for the patient and family to heal, help and be heard.
Until we, as patients are made aware of what patient safety means and what our participation should be, we can not play an active role and the cycle will not be broken.
Patient safety initiatives at a national level need to be brought into every community reaching every patient.
Monday, December 15, 2008
I went 3 times to the class. The first was to do a presentation about medication errors, drop off literature and let the students know some statistics. I left them with websites and additional information. The teacher explained how they needed to do the artwork.
I came back a few weeks later and reviewed and critiqued their work. Could I "sell" the subject? Did they "get it" through their drawings and their art work? Were they relaying the message? If not, they needed to try again. A final look was to see if they had any touch ups that needed to be done. Were they straying from the point? Was their work understandable? Did they have the facts right? Was it too wordy?
These posters could easily be used at the local pharmacy or in the doctor’s office describing inhalers that look alike but are used differently. The young woman who designed a poster about inhalers that look a like took out of her own pocket a red inhaler that is not marked or labeled for proper use. I was surprise myself because the inhalers I have seen are blue, purple or white. I have never seen a red inhaler so really would not know what it’s use would be! It wouldn’t hurt the manufacturers to get together and develop uniform designs so we can at least recognize the colors.
We had a visitor from the state patient safety center, North Shore LIJ Health System and the student nurses came in to view the posters and reaffirm the need for patients to participate in their care for safety. They agreed it is a culture change but a poster over every bed suggesting the medical team should be checking 2 forms of ID on the drawing of an arm band was something they all agreed may actually reduce medication errors. Seems like a “no brainer” to me!
Tuesday, December 9, 2008
This year, we are focusing on medication safety and low literacy. Last year was Infections.
There is no better way to educate the community about patient safety than to take the minds of young people before they have been molded to what society wants them to think and help them understand what medical errors and patient safety is about. The facts and statistics are enough to be educational but the tools and an understanding about the patients role in patient safety are crucial.
Using the information I gave them, as well as research on their own, they are coming up with brilliant ideas to educate and advocate for medication safety, specifically for people with low reading skills, through art work. Kudos to teacher Diane Hawkins for caring enough to not only develop their art skills but to educate them in this important area that would otherwise not reach them!
Monday, December 1, 2008
I remember going to The Compassionate Friends, a support group for parents who lost children, following the death of what was my only child years ago. This group was a life saver for me but our friends were now much older because people my age were having children and had children to be with for the holidays. The people I was drawn to had adult children out of the house and were available to go to Atlantic City on Christmas Day; a place where there were no children.
There are support systems in place for survivors of suicide, murder victims and domestic abuse. There is support for the gay community, war veterans, breast cancer survivors and people who are overweight. But many of these people are satisfied with the medical team and just as I found when I went to The Compassionate Friends, the healthcare system helped them through their troubled times.
As we move to develop a stronger support system for medical injury survivors, we also need to recognize that there is a need for this support for those left behind or living every day with the reminder that the system they trusted to help them, didn’t.
Saturday, November 29, 2008
I had the opportunity to have dinner with and hear Dr. Robin Youngson speak about Compassion in Healthcare. It’s a way of life that may need to be learned but is well worth the time. To get to hear Dr. Youngson was an honor. I can only hope that some of him can rub off and I could learn from him the meaning of compassion in every day living. You don’t need to be a doctor to learn to be compassionate, just human.
Friday, November 21, 2008
I don’t have the answers. Unfortunately it seems inhumane – but it’s not illegal.
Recently I had the honor of accompanying 3 mothers of young children who had bad experiences in a local hospital to visit with the state Department of Health. They were not only angry about the care (or lack of care) received but also at the way the state handled their complaint(s).
It’s not easy getting an appointment to visit with the people who make the decisions on how our state runs but I thought our time was used well.
Following the 90 minute meeting, one of the people in the room shook the hand of one of the moms and said “I’m sorry”. Words that many survivors of medical injury hope to one day hear. She was relieved and impressed that he spoke those words.
“No one has ever said that to me” she said on the car ride home.
If there is still trouble in expressing remorse, than how can we dare trust these same people to make life saving decisions for us. Do they care if we live or die? If they care than they should feel free to show it. They can cry, laugh and for goodness sake say “I’m sorry”!
Thursday, November 13, 2008
A recent call to a major health facility left me wanting to tell the patient “get a lawyer”. But that was not what the patient wanted. My goal is to learn what the patient’s needs are. Not what mine are.
The patient was willing to meet with an administrator at this hospital to learn what happened during her surgery that seemed to concern other doctors enough that they would each tell her to go back to the original physician that did the surgery.
“No one will treat me” she said. Plus the painful symptoms following her surgery made me realize that maybe something did go wrong. I can only encourage her to seek medical attention of which she has tried. They did not tell her she was imagining things but instead, she told me that 2 different doctors told her there were problems that needed to be addressed by the original physician.
The original physician would not see her. Do I need the details? Absolutely not. But, when I called the hospital and spoke to a colleague, she thought a lawyer there may be the best choice. Unfortunetly, the lawyer probed me with questions of which I did not have the answer. I was just trying to make the contact for this woman who was scared and alone so she could make one call and have some questions answered.
Instead, the lawyer left me with the task to get more information. By the time I hung up the phone, I wanted to call the patient and suggest she needs a lawyer. Instead I called her and explained that they want more information before they meet or even speak with her. I think she got a lawyer.
Wednesday, October 15, 2008
She saw me watching her frustration and offered an explanation. “I will have 40 people asking me where their luggage is when they get off the plane” she said. ‘I just told them but they don’t listen.”
I asked her if she ever listened to herself and heard what it was she was saying. “I know that my luggage won’t be waiting for me” I told her. After all, I just used the same airline the day before and I had to wait for my luggage to be brought out.
“How about you tell them to wait for their luggage?” I asked her. She acted like I just discovered a long lost secret. She told me that this was a great idea. “And what was that word you used where our luggage will be?”
She described the jetbridge as the walkway where the landing meets the plane. “And how many people do you think know what a jetbridge is?” Or, I wondered, hear what she is saying through the sound of the engines.
While waiting for the plane to park at the gate, we decided together that she would now tell people to leave the plane onto the ramp and move to the right and wait for their luggage. I wonder if she will still have people asking anymore where their luggage is.
Wednesday, October 8, 2008
The AMA Foundation came out with a film being used to explain health literacy to the medical profession. Feel free to watch the film and come back with your own opinion. View film here
If, I could speak to Mrs. Walker, I would first tell her that intelligence is not about using big words that others don’t understand. Actually, using “big” words is actually a sign of insecurity or it can even be inconsiderate. People know what others can and can not understand – in most cases. If someone is considerate, in tune to others feelings or comfort level, they should recognize if someone does or doesn’t understand.
Mrs. Walker keeps using the word “intelligent” which makes this film good for the doctors, but what does it do for the rest of us who do not have a an education in health but may be brilliant in other areas?
Friday, October 3, 2008
Other stories that we don’t read about like the 4 moms who pulled their kids out of a Long Island hospital also show how advocating for your family may save lives.
We need to start learning about people who speak up and get action so we can begin to report on these stories. This is our measurement! If you work in health care and a patient has spoken up, and it made a difference, I want to hear from you! If you have advocated for yourself or a family member and it’s made a difference, tell me your story! Go to PULSE of NY and link to Share your Story.
Monday, September 29, 2008
NY State Senator Kemp Hannon, the Chair of the NY State Senate Health Committee joined us for the photo. I was glad he came to see the additional support we are getting. I was glad he came to support our work too.
Leslie, Charles, Diane, Sandra, they all came to show support. It is a wonderful community we have built and are building around the sadness we have all once felt. It is a relief that we can put our knowledge and passion into something so constructive. I hope others will follow!
Friday, September 26, 2008
The topic of medical malpractice cost was discussed and the blame went on the large payouts. Sitting at the table with people I didn’t know, I became enraged at the woman next to me who agreed that the large settlements were to blame. I turned and snapped at her and said “they have to stop injuring and killing people.” She reluctantly agreed with me too.
On the other side of me was a defense attorney who worked for a major hospital. He told me a brief story about how he “settled” a case for a large amount of money when he believed there was no malpractice. I asked him if they actually paid the patients family that much money and he said “no” it was significantly reduced.
Later at Hofstra University the panel, called “In Advance of Presidential Debate” was a Town hall meeting on health care reform.
The panel was moderated by Alvin Bessent, editorial page editor at Long Island Newsday, and featured as panelists were:
• Richard J. Umbdenstock, President, American Hospital Association;
• Mark T. Bertolini, President, Aetna Inc.;
• Michael J. Dowling, President and CEO, North Shore-LIJ Health System, and Chairman, National Center for Healthcare Leadership;
• Sara R. Collins, PhD, Assistant Vice President, Program on the Future of Health Insurance, The Commonwealth Fund; and
• David M. Weiss, PhD, Professor in Hofstra University’s Masters in Health Administration Program, and Health Professions Family Studies Department.
Here, the conversation of safety and quality came up beginning with Mr. Bertolini. He quoted the numbers of deaths and injuries due to medical errors and his concerns were followed with comments of support by Mr. Dowling.
When asked about disclosure, Mr. Dowling told the audience that there are programs around the country which are encouraging full disclosure following a medical error. He knows that evidence and experiments have been done to show that the public appreciates full disclosure and he expects to be doing more of this in the future.
Someone asked what we will be speaking about in 4 years when we once again are gathered to have this discussion about health care. Even more than 4 years ago I was on a panel and heard many conversations about disclosure being discussed at medical conferences. Proof that it does not raise the amount of medical malpractice payouts doesn’t seem to matter. Disclosure is rarely is being done for patients and their families. I am sure in 4 years, we will be right where we are today having the same conversations.
The cost of malpractice insurance came up. One panelist told the audience that medication errors are costing $9 billion a year. The panelists agreed this was not a problem.
Finally, I found the real disconnect is what I have been saying for years. The people in charge of health care decisions are too far removed from the patient. No one on the panel, making decisions in health care, ever treated a patient. Though they have been patients, I’m sure, being the CEO of a medical establishment is not the same as being a patient and an office worker, house wife or retired senior citizens. Patients and their families have a great amount to add to the dialogue, but they don’t always ask us.
To watch this program go to Educate ‘08
Saturday, September 20, 2008
It’s hard to prove that the dead children aren’t dead because they were sick or because of the inadequate care accept that the state came in and closed down that department following some “unexplained” deaths. But when you put the newspaper away and go on with your business, do you forget? Some do, but for those who live it, they will never forget.
Four families used their right to leave a hospital with their sick children and get the care they needed. The children survived and returned home following the care they received. At one hospital they were being treated for the wrong illness. They were all born with heart problems. If they would have died, it would have been blamed on the bad heart. Hard to prove otherwise, until you look at the survivors.
Thursday, September 4, 2008
In the case of James his mom walked away from a settlement, something most people don’t get a choice in doing. The lawyers didn’t get paid either that day but allowed Mary Ellen, James’ mom to be in control of her future – something the healthcare system took away from her when her baby died because of the care he received while hospitalized.
Most medical malpractice law firms, I suppose would frown on a client walking away from the settlement. Instead, I have heard about the wording found after the family signs with their lawyer that they will never be able to speak again about the case. They are sworn to secrecy and in some cases, they just can’t discuss the amount of the settlement and other cases, they can’t discuss the death at all.
In fear of being sued, some families begin to stop ever acknowledging their loved one ever existed. They never talk about the child, mother or father again. Chances are, the lawsuit tells them the family can’t talk to media or publicly disclose the information, but in the sad and painful place the family is left, they just stop talking altogether.
Many people knowingly make that painful choice to take the settlement and not be able to discuss certain parts of the settlement or case and move on. It’s a difficult decision.
To take a settlement – or not, is a very personal decision. Understandably the insurance companies will settle more easily knowing that the patient or family will never talk. Families who are willing to go that route should not be judged. That settlement is, after all acknowledgement that there was a case and a settlement and even if it’s not for public information, it is a time the family can begin to heal and move on.
Tuesday, September 2, 2008
When my friend asked me why I did this, “was there a personal experience”, I felt my body tense as if to say why does there need to be a reason? It is a good and noble cause. It is very much needed but not taken seriously as a profession. If there has to be a reason, than it is something I want to do like a hobby. It is much more than a hobby. Why did I need a reason?
In this case our friendship grew in other areas and I realized there was never a reason for her to know exactly what I do with my time. Or, just as important why I got involved. So I began my elevator speech about the need for patient safety education and finished with a brief explanation about my sons death because of his medical treatment. When I paused ready to receive questions, I saw the pain in her eyes as she lifted herself out of her chair reached over and hugged me and said “I am so sorry, I didn’t know”. We continued our afternoon together but all along I felt sorry for her, as I do the others – who don’t know yet just how scary and dangerous a hospital is.
Thursday, August 14, 2008
As a Commissioner on the Joint Commission (also called a board member) I am one of 7 “public members”. I am not there as a representative of a healthcare organization such as the American Medical Association, American College of Surgeons or any one of the other prestigious groups who make up the governing body of the JC as it has been called since the change in name in 2008. As a public member, I am there as a patient, potential patient, family member of a patient or someone from the public with an interest and some knowledge (and passion helps) in patient safety.
To participate in surveys, commissioners observe the process so we can participate somewhat intelligently on the decisions being made at the board level. It also helps being a member of the Accreditation Committee. The Accreditation Committee is where discussions happen following a survey when there are outcomes that need addressing.
Each team of surveyors has someone in charge of the group. This is the Team Leader and basically set the tone, and run the survey. The team consists, usually, of a nurse, doctor an administrator and / or a life safety code specialist. The life safety code specialist specializes on the environment of care. This includes fire safety, engineering, electronics and much more as it pertains to the buildings safety.
The survey begins with a meeting in the lobby of the hospital before 8:00 AM. By this time, the facility staff had less than an hour to know of the team’s arrival. They are informed, by way of the internet that the surveyors will be there. They are given the teams names and some background on the website. At this point, either the organization is ready, or not. There is no planning that can happen now.
Generally greeted warmly, there is a sense of discomfort in the air as now these unannounced guests will be taking over offices, go through files and interview already overworked staff. Sometimes people get called in from vacation and soon all leadership begins to envelope the surrounding rooms ready to answer questions, assist in tours and retrieve files and books of information.
The courtesy shown by the surveyors are a clear example of their own knowledge of being on the receiving end of a Joint Commission survey. They too work in hospitals and have an understanding of the process from both sides.
As the surveyors get settled in, introduce themselves to each other, share some small talk about the facility and their past experience, the hospital staff is preparing in another room a meeting with all the department heads and senior level staff.
By 9:00 AM everyone is crowding into a large conference room. There can be as many as 15 – 20 senior leadership depending on the size of the facility. The team leader begins the introductions.
Once the group has shared pleasantries, the team leader will discuss why they are there and what they expect to see. The organization staff will give a history and overview of the facility. This will include their size, staff, accomplishments and the neighborhood they serve. The team will now go back to continue reading by-laws, hospital policies and reviewing the organizations books and information related to quality. The administrative staff will stay available on the other side of the closed doors in case the surveyors have questions and they will be available to retrieve additional information.
The team discusses their plans amongst each other which usually consist of reviewing more information such as credentialing, policies and procedures or doing tracers. A tracer is reviewing the list of all hospitalized patients including their age, length of stay and diagnosis and picking a patient out to trace from the moment they arrived at the facility to the present.
During the tracer, the surveyor will be looking to see if standards are met such as writing the medication appropriately, checking the patients vitals and patient teaching. While in the building, the surveyors will note if they see medical staff wash their hands, wear name tags and practice proper patient identifiers such as asking the patients name, birthday and checking the arm band. They will look for clutter, expired packages and any unsafe conditions.
The surveyor will interview the nurse caring for this patientduring the tracer and ask to see, in the chart if all appropriate records are kept. There may be discussion about restraints, use of medication or sedation during a surgical procedure. While tracing a patient the anesthesiologist will be interviewed as will the nurses at admitting and even the people who clean supplies. Every moment of that patients stay is traced and recorded. The patient is often also interviewed about their stay. This process is repeated throughout the survey. The team members are followed closely by senior management and escorted through the building so questions can be answered and charts can be easily retrieved. At each department the group is met by the senior staff of that department.
After each tracer, a report is written by the surveyor. The team meets at lunch and types their reports and shares their finding with each other. They compare notes, express concerns and ask advice of each other. After lunch they are off again to do more of the same.
The second and third morning consists of a brief meeting about the findings the day before. All the organizations leadership meet and listen to what the surveyor found that was good, and that may be a problem but with no hint of the final report.
Each team members has a chance to share their findings and the organizations leadership can ask questions and for clarification.
When sharing with the leadership potential problems, the surveyors do not use names. They are looking for system problems and how the problems can be addressed and approved upon. They are looking for the same problem with each patient, if in fact a problem is found. Is it the individual? Or is it the way things are run there? Often the surveyors have suggestions and will help staff make improvements, but they are not there to give the answers to the staff, they encourage them to come up with their own answers and make it work.
The surveyors can be tough, but they are fair. They know if something is serious and they have no qualms about sharing their concerns. That is, after all what they are there for.
The life safety code specialist spends just one or two days and looks at the roof, the kitchen, the electrical and exit signs. He will ask about the fire drill and how the fire doors work. He will speak to staff about their training and knowledge of emergency situations and protecting the newborns from abduction. He too has an important job and it’s completely related to safety. He gives his presentation at the end of the day and would usually leave before the others.
The final day, senior leadership come to hear what was found to be good, potential problems and anything more serious. At this meeting board members of the facility are often invited.
The report will include RFI’s or Requirements for Improvement. RFI’S can be fixed and improvements made. Too many RFI’s are a potential problem but still each organization is given a chance to fix the RFI’s. Once the surveyors leave, there is now contact with the corporate office of the Joint Commission and that is how contact will continue.
Some final thoughts; The Joint Commission will not fine or discipline the facility. They will give them, when appropriate RFI’s. Too many, depending on the size of the facility can lead to possible loss of accreditation which means loss of funding. In reality, I don’t want to see hospitals lose funding or have their doors closed. I want to see them improve and keep us safe.
Please feel free to comment to this blog.
Sunday, August 10, 2008
Though they care, and they try, many of the people at the top are too disconnected from the people who touch the patients to truly understand what is happening every day to the patients. I want to care about the people who work in the industry. I really, really do want to care. Actually, I do care. But I just don’t think they are doing enough.
If the people at the top really wanted to see what is happening to their patients, they would spend time sitting in the lobbies and listening to conversations. They would take off the suit and tie and ask the security guard how to get to a room on the third floor. They would use the bathroom in the lobby of their facility and read the graffiti on the wall, see that there is no soap in the dispensers and see that the toilets are filthy early in the morning.
I went into one hospital bathroom and I swear there was a homeless person living there.
I sat with a representative of a major pharmaceutical company recently and he told me about the changes being made even before the newspaper story hit about a major error. They are still being sued even though the changes were started before this error occurred. I was glad to hear that they were taking patient safety so seriously but why did it take so long. Children die because of packaging errors and the problem gets changed. That’s what we want in patient safety right? But what does that do for the family who lost a child? Can you actually tell me this error never happened before? Or, is this the first time they were caught and forced to speed up the process of change.
A mom dies from an infection and the hospital is going to post the infection rates on their website. Does that bring back the mother to her young son?
We have the data to stop these medical errors and infections from happening. We must stop them from happening.
Sunday, July 27, 2008
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.
Saturday, July 26, 2008
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.
Thursday, July 17, 2008
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.
Monday, July 14, 2008
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.
Sunday, July 13, 2008
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.
Wednesday, July 9, 2008
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.
Monday, July 7, 2008
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.
Tuesday, July 1, 2008
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.
Sunday, June 15, 2008
The National Patient Safety Foundation congress in Nashville Tennessee offered many of us the real fountain of youth. It was a beautiful 3 layered fountain, set back in the area where people gathered, that we were to put flowers in as we remembered those who have lost their struggle or continue to live with their struggle of medical error, adverse medical events or unplanned outcomes in care.
It was a beautiful opportunity to remember why we were all there. To remember bad outcomes and avoid them in the future.
The NPSF has been a leader in keeping the patients voice in patient safety. The patient can mean the one’s who have used the healthcare system and received less than acceptable results. The family can mean the people who lost someone close to them from an untoward event or who help their family through the complicated medical care as part of the team. In this case, with the “fountain” which I will call the fountain of youth, has given us the symbolic gesture of seeing how many were there because of whom they lost or who they wanted to honor. A patient, friend or family member, we were there for the same reason. To remember and make sure it doesn’t happen again.
I hope the NPSF continues this symbolic tradition to help us remember publicly or privately, why we are there. This is the Fountain of Youth because those who have lost the battle from a medical error will stay young forever..........in our hearts.
Saturday, May 24, 2008
On May 16, 2008, on the recommendation of my trusted pediatrician, I brought my son to you to look at his sore throat.
Though initially impressed by the short waiting room stay – just ten minutes, the exam room experience was not acceptable. It went like this:
You had a conversation with my son and myself, wrote your notes and very quickly grabbed your headgear and tools. You checked his ears and nose tore open a wooden stick for his mouth and examined his throat with a stick that touched your ungloved and unwashed hands.
Your actions were so quick I did not even have time to stop you other than to scream which would have upset my son terribly. All the while I assumed at some point you would have stopped to wash your hands, use gel or practice some sort of hand hygiene. It never happened.
This lack of proper hand hygiene broke all policies and standards per Joint Commission, Agency for Healthcare Research and Quality, Institute of Healthcare Improvement, National Patient Safety Foundation and Centers for Disease Control, for infection control. If these are your office practices, the hand hygiene practices in your surgical and hospital settings may be equally at-risk.
There are over 90,000 deaths a year from hospital acquired infections. Hand washing is the simplest rule to infection control. Health care professionals must be setting examples and practice basic hand hygiene to promote the reduction of spread of infection.
This happened in your office of 875 Old Country Rd, Plainview, the same building that only months earlier there was a protest and press about Dr. Harvey Finkelstein’s unsafe infection control practices gaining national public attention. As a mom, and a patient safety advocate educating patients and families on their rights for safe, quality and competent care, I am disappointed at myself for not speaking up sooner. Even more so I am deeply troubled that you would treat my child with such disrespect and unsanitary practices.
If this was not a standard patient interaction for you can you help me understand how it could have happened at all? May I share with you much of the information I have as a patient safety advocate for the past twelve years?
This experience will be a great springboard to share with others the importance of proper hand awareness in my patient safety education workshops. I just hope this does not cause a new concern in my son’s health care, or with others you or he may come in contact with.
I have known Tony Smith from SAS Real Estate for many years, even before the death of my son which propelled me into patient safety work. First, I knew Tony as a local businessman while I worked at the post office. Then, when I left, we stayed in touch and he became a big supporter and friend of PULSE. It means a lot when people get behind our work since our work is about people.
What a surprise when I looked at the back cover of our local community newspaper and Tony from SAS took out a full page ad about our upcoming Family Centered Patient Advocacy Training Workshop. How do you thank someone who puts their reputation on the line for you? Tony has a great business and has been around a long time. He surely doesn't need my push for him to sell homes. But people need to know what it means for a company to stand behind a groups struggling to do the right thing, for the right reasons and then have a power house give a push.
Thank you Tony!!
Saturday, May 3, 2008
I think it depends on how we describe success. We can’t really measure our success because there are no standards on what we would measure it. Perhaps, I can think that PULSE is successful in this way:
We have probably saved lives. That is a good thing.
We are recognized by our colleagues as doing good work.
We are recognized by national leaders in patient safety as doing good work.
There is a wonderful group of people who support us either in their time, knowledge, expertise or financially.
I am busy almost every minute of every day either fulfilling our mission or finding ways to fulfill our mission. We stay on topic.
Our programs are up and running and in the communities.
These are all good things but still, the corporate world wants measurement. Something we may never do. We may never be able to rate our success. We may never have more than a few months money to help us survive. We may never even know how many lives we have saved.
So, if I am to “measure” success, I would prefer to hear it from you, my readers or feel it in my heart.
Thursday, May 1, 2008
For many, it's not about not being able to read, but it's about not being able to understand what is being said. This happens every day, in every profession. It only makes sense that literacy focuses on the whole manner of communication.
The program was wonderful and left the attendees the tools to make comprehension work for the patient. It wasn't just a lecture but the tools were described to be used.
Most of this addresses the doctor patient relationship but in this case, as in many of these conferences, there wasn't a single doctor in the audience. Hopefully they are getting this education elsewhere...............or are they?
Saturday, April 19, 2008
It didn’t matter to me who signed the girl out, the fact is the germs are all over and simple precautions could have been taken to change pens or at least be aware of the germs people are carrying. I am not a germ “freak” but I do know that they are coming from somewhere and I don’t feel like getting them.
What if that woman is going to visit a friend or family member in the hospital? Would she know enough to wash before touching her friend or anything in the sick friends room? Have we become so casual with germs that it’s ok to use a shared pen with possible germs lingering from pink eye?
These infections are coming from somewhere and finding their way into our hospitals to attack our most vulnerable citizens. If we, the public don’t declare war on these germs, they will win.
Saturday, April 5, 2008
In this case, my mom called me with the name of the hospital and the doctor’s name. He wasn’t in for anything too serious but that shouldn’t matter. Every hospitalization should be treated serious when we know how dangerous it could be.
The hospital seemed to have won all kinds of awards and was as “good” as a hospital could probably be. But, when I looked up the doctors name on the Florida Department of Health website it read “This practitioner does not currently hold staff privileges at any hospital/medical/health institution in Florida”.
This statement on his self reported profile was as equaling troublesome:
Professional and Postgraduate Training: This practitioner has not completed any graduate medical education.
A gastroenterologist, I would have thought there needs to be some additional training.
I immediately called the Department of Health and only after speaking to 5 people, was anyone able to tell me for certain that this doctor could not practice in the state of Florida as per this profile. Calling Quality Assurance at the hospital I asked them about this information and they told me they had different information and I was mistaken. “I am not mistaken” I explained and faxed her what I was reading. “I will ask my mother to have that doctor removed from my fathers care until you can explain why this doctor can not practice in Florida”
They found another gastroenterologist to treat my dad but before he ever saw him, the first doctor called me to ask what I found and seemed completely oblivious to the states profiling website.
He went on to tell me all his credentials and his good name and then allowed me to offer to help him fix this “mess”. He gratefully accepted and continued as my fathers doctor knowing that we are empowered with information he may not (or may) have known about.
Although I am still concerned that this information was not accurate or just wrong, I was glad that we had this conversation and the practices that I preached worked. We had an open conversation, cleared the air, discussed my concerns and continued the relationship.
I will give him two weeks to fix it.
Monday, March 31, 2008
I was deeply flattered that she invited me. After all, this was her community, but her expertise is the support following an unplanned outcome in care. I joined her at a meeting of the MITSS Task Force where a group of women discussed how they would work together to get the MITSS Mission out and help more people.
I loved the way each of these participants took ownership of MITSS. From the quietest person in the room, to the young animated chair of the committee, each participant seemed to feel responsible to the future of this organization. The energy in the room was wonderful and really very positive.
Something felt right there. We got to spend some quality time with two staff of theNational Patient Safety Foundation who were also on their way to the conference. Our late night dinner allowed us some time to chat and even laugh – something I realized I don’t do very often any more.
It reminded me how we are really all connected. And, if we aren’t, we should be. It is often our own sad experience, fear of having a bad experience or just the knowledge of knowing how dangerous, the present state of healthcare is today in this country that has made this movement grow at all. If we stay connected and pool together our work, knowledge and resources, surely we can grow strength across America to improve healthcare. But, like many of us, we need to have a voice in our own backyard first.
Sunday, March 23, 2008
The case was of a woman who had a mastectomy. She saw her original doctor a few times early in the year who watched the calcifications in her breast not change for repeated mammographies. She had many more tests for safety than would have been expected. Finally, the doctor said don’t worry, come back in a year. The following year, the patient changed doctors and it was found she had cancer and had a mastectomy.
Of course there is 2 weeks of information I am not filling in. They settled out of court for a fairly large sum of money.
The woman in the supermarket told me the entire jury was siding with the doctor. She was surprised they settled because they all really believed the doctor did all she could with the information she was given. It was a difficult case. The woman in the supermarket was in turmoil, clearly distressed but also amazed at what she learned in just these few weeks. She was glad she said “that the woman got something”.
I asked why since the money wouldn’t change anything. She didn’t know, it just seemed like it was the right thing to do for all her suffering.
Then I asked the question that could not be answered. “How do you know if the woman actually needed a mastectomy or if the doctor didn’t just do it because it was easier than treating the patient”? I went on to ask this woman in the dairy department “Did anyone interview the surgeon and ask what was the basis for the drastic surgery?”
Thursday, March 20, 2008
I can’t imagine that they looked very close or carefully since in my letter THEY DIDN’T EVEN SPELL HER NAME RIGHT!
Sunday, March 16, 2008
Tameka struggled for 11 months following a botched surgery and numerous other surgeries to repair the error. Tameka suffered from many, many infections. I have to wonder how things will ever change. How could this young, vibrant woman who had so much to live for die from something so preventable.
For eleven months this hospital became her home. Joseph spent as much time with her as humanly possible. I was privileged to be called in to help and get to know this family through Joseph's stories and memories of his wife.
In my conversation with the head of risk management a few months ago I was told that the husband isn't giving me the whole story. I never asked for stories or information. I wanted to make sure the husband had the information he wanted and his questions answered. Obviously, he had a right to be concerned. Now that Tameka is dead, I would like to tell them at the Long Island College Hospital "I told you so". But I wouldn't do that. It'S easy to find fault and demand answers following the treatment and yet another preventable death.
The Department of Health went in and found no violations. I went in and witnessed Tameka being treated by someone with no gloves and he never washed his hands. The nursing director pointed to her own photo on the wall when I asked her if she was in charge. When I asked each nurse their name, they scrambled for their name badges. One had to find it in another room. Not that any of this matters now.
I suggested that Joseph ask the doctor if we can find help for him to make better decisions. He told Joseph no, he was seeking advice from doctors within the same hospital. I reached out to the medical community for help. There was nothing they could do. Joseph was afraid to move his wife. She was too sick but that may have saved her. If she died because of the move, none of us could have lived with the guilt.
There is no easy answer. Joseph is warm, kind and a gentle soul with a lifetime of love left inside of him that he was supposed to share with his wife. Tameka, for many in that hospital she may be another statistic. But I will not soon forget her and what could have been if we were able to save her.
Joseph will go back to work in his hospital where he is employed to the loving community that surrounds and supports him. But love and caring just doesn't save lives. We have to start demanding better treatment or this will continue. We can not allow this to continue!
Saturday, February 23, 2008
The response was by a group of doctors in crisp clean lab coats and staff in suits telling the listeners and viewers how wonderful Mercy Medical Center is. I am sure there are thousands of people, patients and families who also think Mercy Medical Center is a wonderful facility. I have heard great stories come out of there. What I didn't hear them say, is that when patients or health care providers are dissatisfied with their care, there is a way it is handled, there is a place for them to take their concerns and how they are handled.
The press conference participants had some strong words about the doctor who reported complaints. Dr. Anthony Colantonio does not have the cleanest record as reported at this press conference. We have to wonder why, Dr. Colantonio was continually working at the facility and only recently given a "leave of absence" pending an investigation and hearing. Unfortunately, it seems that Mercy as well as other hospitals have doctors who they feel may be unfit to work at their facility still seeing patients.
Unfortunetely, the public only knows what we are told by the media and with continued lack of any transparency the health care system and the doctors reputation are handled secretly while we, the public are left to get treatment at our most vulnerable time not knowing what kind of squabbling is going on possibly jeopardizing all of us.
It is only a matter of time until another story breaks at another hospital and we have to wonder if this one is preparing to work with the public before it happens or are they cleaning their lab coats for the next press conference?
Sunday, February 10, 2008
I would like to think that this is a terrible accident but I don't think so. I think that hospitals can play Russian Roulette with our lives. Hopefully you, or I won't become the one who falls into the hands of the untrained, unqualified, overworked staff or understaffed "system" that is cutting corners to save money jeopardizing our lives.
The hospital is sorry? Of course they are sorry. They are sorry they got caught and a patient and their entire family have to now pay the lifetime of emotional pain that will go with this incident. They can be sorry but the patient is dead and it never should have happened!
Tuesday, February 5, 2008
Watching the news that evening, I learned heart disease is the number one killer in women. But, stories I heard that made it to the local news were about the misdiagnosis of heart disease. Every woman said her heart disease was misdiagnosed. It sounds like the misdiagnosis should also be being addressed. Maybe then it wouldn’t be the number one killer!
Sunday, February 3, 2008
I was a bit surprised to see how this roundtable was actually meant to be a media event http://www.newsday.com/news/local/suffolk/ny-lifink315558189jan31,0,4710641.story
There were no handouts for the general public, only the reporters who attended. And the information was the same as it usually is, these are the problems and this is what we should do. So do it!
Why do our elected and appointed leaders feel that it is the media’s job to report what is being done in the field of patient safety? There are still no groups who are supported to do patient safety education yet in the community. Could you imagine if the only education about breast cancer came from media? We would have never moved forward to battle the disease. Imagine if doctor’s offices or clinics didn’t discuss diabetes with their patients? How would diabetes ever be tackled?
Unfortunately patient safety is still, in my humble opinion an opportunity for healthcare institutions to ask for money and hire people to exam issues within their systems. Until patient safety becomes more transparent, it will stay a secret and not move forward to real change.
Friday, January 18, 2008
In this case, the report is informing the public about the doctor's unprofessional practices when it comes to infection control.
So, what's a patient to do? Tell your doctor(s) to wash their hands? Well obviously it wouldn't have worked in this case. His hands may have been clean but guess what, there are plenty of other ways patients are at risk when it comes to the spread of infections.
Until patient education is taken seriously - before using the healthcare system, we, the public have no clue what we can be doing to get inolved in safe, quality care. I have been teaching patient safety for ten years and the syringe subject would have never come up. Still, I see no reports on what we should be doing to protect ourselves from reused syringes.
Reporting to the public is the medias job but we also must educate!
Saturday, January 12, 2008
I recently met a patient who was in the intensive care unit of a New York hospital. I won't say where even though I probably should. This woman has been hospitalized for 9 months with infections. I witnessed 2 nurses treating her while she lay unable to move on a respirator and swollen beyond belief from fluids. Each nurse grabbed gloves from a box but never washed their own hands first. No antibacterial lotion, no washing. The radiologist came to take x-rays and he shifted the patient, moved her arms and prepared her for x-rays and he never washed, used lotion or put on gloves!
The husband, who I was there to support, did not want me to say too much. He is afraid they will let her die. This sort of thinking is what has gotten today’s healthcare system in trouble to begin with but I have to respect him and what he wants from me as a support to him.
Yes, I wanted to tell them to wash their hands first but I think I was too shocked that it didn't occur to me that what I was seeing was accurate. The simple words "Can you please wash first" that we want so desperately to say just don't come out as easily as we think. If it were my family member, you bet I would say it but it just seemed so irrelevant at the time when there were so many other "issues" I was witnessing at this facility.