Medication Safety Through the Eyes of Young People

I had the opportunity again to meet with young people studying graphics design at Farmingdale University College on Long Island to develop patient safety posters.

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!

Happy Holidays?

For people who have traveled the road of medical injury or loss of family because of the medical treatment they received, there is very little, if any support system out there for them.

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.

Compassion in Health Care

I recently had the honor of speaking at the Colorado Patient Safety Coalition’s 8th annual conference. This coalition is made up of professionals who are moving forward in the advancement of patient safety. The conference was only one day but very informative and probably one of the better conferences I have ever gone to. I heard Dr. Nancy Nielson, President of the AMA speak about the loss of her dear friend from a medical error and share her pain as well as her frustration. I am no longer amazed at who, and how many people have experienced first hand the harm done by the medical system (there is no doubt all the good there is done). It has just become a matter of time until those who have not experienced a medical error or adverse event, will.

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.

Saying Sorry

The staff who work in the hospital still are not very quick to say “I’m sorry” if there was an injury or death because of their medical care. They will say “I’m sorry” if the patient died from cancer, old age or a car accident. But, bring a fairly healthy person into the hospital to get a routine procedure that leads to infection, and then death, chances are you will not hear an apology. Why is this?

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”!

Why Sue?

Why do people sue their trusted doctor or hospital? Sometimes it’s because they just have no choice. It becomes a battle of the fittest when a corporation has the right to not answer questions, not meet with a patient or not even address the death or unplanned outcome of care.

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.

Critical Communication

While on an airplane this week I was close to the front and smiled as the flight attendant looked frustrated when she rambled some words about meeting our luggage when we arrive at the “jetbridge”

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.

Health Literacy (my opinion)

I am a big supporter and believer that there is a problem with “health literacy” in this country. Described by the American Medical Association, Health literacy is “the ability to obtain, process, and understand basic health information and services needed to make appropriate health decisions and follow instructions for treatment.”

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?

Measure the Living!

Aha, you measurement people! So, you say we can’t measure lives saved? Well we can, people who advocate for themselves or others have begun to speak up. A recent story was printed on the CNN.com website Empowered Patient that tells the experience of actor Evan Handler and his advocacy for himself why hospitalized for 8 months.

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.

Wal-Mart Grant

I just returned from a photo –op where a few of us accepted the “big check” of $25,000.00 from Wal-Mart for patient safety education and advocacy training. It’s a great day when a corporation recognizes the need for our work. Since the moment I learned that we received the grant my head has been spinning with ideas. It seems so many of the things we have wanted to do to make patient safety information accessible can start to unfold.

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!

More Talk

Two times today I had the opportunity to hear presentations about our health care system. The first presentation was at a luncheon where NY State Senator Kemp Hannon and Michael Dowling, CEO of one of our largest health care systems in New York had a conversation with the president of Farmingdale College, Dr. W. Hubert Keen and the audience. There was nothing mentioned about safety. Although the three gentlemen were personable and answered questions about today’s health care costs, I didn’t get the impression anything new would be done or any changes would be made because of this event.

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