Friday, November 21, 2008

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”!

Thursday, November 13, 2008

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.

Wednesday, October 15, 2008

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.

Wednesday, October 8, 2008

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?

Friday, October 3, 2008

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.

Monday, September 29, 2008

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!

Friday, September 26, 2008

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

Saturday, September 20, 2008

Count the Survivors

Who is counting the people who survive substandard medical care? I just met with the “moms” who left one hospital at different times, and in different years because they felt they were getting inadequate care. Their children survived. Other children died. But, children are hospitalized because they are sick. So people don’t understand that sick, doesn’t mean dead.

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

The Verdict is In

We have all heard about the verdict, $10 million $20 million that seem like easy money. But, the fact is these awards are rare. They often get reduced and the lawyers, who deserve to be paid for their hard work, also take a piece of the dollar amount “awarded” to the patient or family following a medical malpractice case.

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

What Kind of Work Do You Do?

At a recent backyard party a friend asked me what kind of work I do. I have grown to dislike that question since there seems to never be an easy or comfortable answer. “I am a patient advocate” I told her. “I teach families and friends to help the patient”. I quickly corrected myself “I am a patient safety advocate”. I wanted to be sure I wasn’t leading her to believe that I am teaching bathing the patient, bandage changes or encouraging the family to go to the hospital and sit quietly in a corner waiting for the doctors "orders".

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.