Patient "Activist" Meeting

An Invitation to Meet With Patient "Activists"

Trisha Torrey, Every Patients Advocate
and Ilene Corina, PULSE of NY

I was chosen one of 50 people to attend the Institute of Healthcare Improvement conference and meet with 50 patient safety “activists” from around the country. It was both a humbling but exciting adventure. I heard there were 92 applicants, 50 were chosen and I know of at east 10 people who never even applied. There are many of us out there!



Alicia Cole ASAP, Ilene Corina, PULSE
and Linda Kenney, MITSS



I was only there for the Saturday night meeting and Sunday workshop that we all had an opportunity to meet each other, get to know each other and share some of our dreams and sorrows that brought us together. It seems that at some point, all of our paths have crossed and we knew of each other or knew each other well. Our goal – to decide on a goal……

I believe sharing was the most common thread. Many people who have had bad outcomes want, and need to share their stories. They do this through their work and reach more people. I was impressed with the many professional groups that were started out of their grief. Just to mention some who were impressive;

Honoreform.org from Nebraska is dedicated to protecting patients through safeguarding the medical injection process.

The Safe Care Campaign started by the Nahum family has become a trusted expert in infection control and works closely with the CDC.

Alicia Cole has also become an expert in hospital acquired infections after battling her own for years. She formed Alliance for Safety Awareness for Patients and many people get support and information from her organization. 

And of course Trisha Torey from Every Patient’s Advocate has helped to keep many of us connected.

Many of us keep blogs such as Ken Farberstein who encourages story telling. 

Some have written books such as;
Bart Windrum who wrote Notes From the Waiting Room.

Or Jari Holland Buck who wrote the Hospital Stay Handbook. 

Dr. Cari Oliver wrote The Cautious Patient (and underwrote much of the meeting).

Patty Skolnik started Citizens for Patient Safety in Colorado travels the country lobbying for all our safety following the death of her only child, Michael. We can all learn something from her professionalism in this field.

Lori Nerbonne founded New Hampshire Patient Voices after numerous flaws in the healthcare system killed her mother. 

I didn’t get to spend nearly enough time with my friend Kathy Clark of Servant Lawyership.

I was so happy to finally meet Dianne Parker who has shared her husband’s story about his untimely death from a hospital acquired infection.

It's always good to see Cathy Reuter from Surgicalfire.org.

It was actually the first time all PULSE representatives were together, Doug Hall from Florida and Jennifer Dingman, Colorado and myself.


Doug Hall, Ilene Corina and Jeni Dingman
PULSE



I was glad we got to laugh a little, cry a little and recognize that although we come from different places in pain, in time and in demographics, we are all joined at the heart because of our pain, lack of trust and / or anger because of the people and places we trusted, that ultimately caused harm. I am grateful for my new, and old friends.

Communication is Critical

Communication

It happened again, someone is “reading with an attitude”. I call it that because that’s what happened when someone reads something, and then interjects their own emotions into it. Read this sentence without reading any words stronger than another; “She never checked the closet”. Now read the same sentence and emphasize the words “never” and “closet”. Seems kind of accusatory, no?

I use this as part of my Critical Communication training. This is communication that includes nonverbal conversation. Wars can be started over how something is perceived. Friendships lost and business deals can go bad. I like to “assume good intentions” when I read something. It is often better that we read everything flat, with no emotion and assume the sender means well. It’s easier to get something out of a correspondence when we aren’t putting emotions into it.

Making meatloaf is part of the critical communication training. How we hear things, read things and of course how we present ourselves, especially under stress, something that happens easily when being diagnosed with an illness or just being intimidated in a doctor’s office. Stop and think how other’s may perceive your e-mails or letters when writing and then when you receive something questionable, assume good intentions.

The TSA and HIPAA

The TSA is looking at us through our clothing and / or touching our bodies outside of our clothing, to see if we have weapons and / or explosive devices. I personally don’t care. Since having three babies, multiple pregnancies and lots of complications, I am basically immune to being looked at by strangers who probably could care less about what I look like naked unless of course there is something there that they are looking for. I feel very safe when I fly now.

The problem is not that they are looking at us, the problem is how we are treated, as human beings. This can be especially stressful for transgender people. Transgender being an umbrella term for people whose gender identity or gender expression differs from what they present. Working closely, the last year with transgender patients, I have learned that many transgender people don’t want to acknowledge their own body, why should they allow someone else to acknowledge it? Many transgender patients avoid medical care altogether to avoid this inner turmoil. Avoiding care becomes dangerous to anyone who needs to see a medical professional. But would they, or should they have to give up flying for this reason? I don’t think so.

I am not sure what the training is with the TSA but I do know that people in healthcare go for training in privacy. HIPAA has become a common term used in healthcare to keep lips sealed but I guarantee you many people don’t even know what it is used for. We do know that in medical treatment, our privacy is protected. Why then aren’t TSA employees given the same training in privacy and courtesy?

Training can be simple, talk to people about their issues and concerns about being groped or viewed. Learn about the person as a person, not just a number. Hospitals are being pressured to focus on “patient centered care”, viewing the patient as a person. It is not time consuming but it is a different way of working and training. I’m not saying that a TSA employee has to take a customer out for dinner and get to know them, but they should be taught to treat each flyer as they would want their own mother or sister treated. When famous people go for surgery, have a baby or are treated by a medical professional, we can be assured that the information will be protected and in most cases, the patient will be treated respectfully.

Medical professionals will someday be patients and want to be treated with dignity and respect. Unlike airline employees who fly and are seen with their full uniform and treated with courtesy as they go through the scanner, medical professionals who are hospitalized are forced to wear the same exposing garments as us plain folks. Maybe we should start putting TSA employees through scanners too for the public to view.

$154G in medical error - Times Union

When Not Verifying the Patient is Deadly

When the article $154G in medical error came into my “in” box, I almost couldn’t believe this is still happening – even though I know it does. We don’t always get the whole story when it comes to news articles, so I rarely comment, but this seems pretty straight forward. The nurse gave the wrong patient a painkiller that ultimately killed him.

“a nurse gave him the painkiller around midnight. The drug was supposed to be given to Bruce's roommate, who was a cancer patient.”

The patient who received the deadly dose was hospitalized for evaluation. He “was suffering from end-stage chronic obstructive pulmonary disease and had only a year to live” Bruce had a DNR “The hospital staff followed Bruce's living will, which directed them not to intubate him.”

Teaching patient advocacy I look for stories that bring the problem of patient’s safety to light. This surely does it. But this family wasn’t on the evening news, they weren’t awarded millions of dollars and they probably aren’t going to make changes because of their horrible experience. What kind of changes can be made if there already is a policy of checking the patient’s name and birth date every time you treat him, but the policy wasn’t followed?

We aren’t supposed to “blame” the nurse. She may have been overworked, exhausted or incompetent. But a patient is still dead because of what she did. “at the trial, the hospital's lawyer argued that the hospital should not be held responsible for Bruce's death because of the do-not-intubate order. The hospital's counsel also argued that Bruce did not suffer because OxyContin is a medication used to give dying patients comfort care."

This is the sort of discussion that is brought up around a trial. I wonder what the family thinks of all this.

As angry as this may make anyone reading this, the fact is that a trained advocate may have kept this from happening just by making sure the nurse followed procedure. We can't measure how many times a family or friend, at the bedside saved a life. We just know it happens.

Winner of the MITSS HOPE Award

MITSS HOPE AWARD
Honoring Outstanding People Everywhere

I was nominated and won the MITSS HOPE award this year. I am on cloud nine - just floating after this wonderful evening of networking, sharing and making new friends. It is not “just” an award. This award has special meaning. I had 3 nominations! Jennifer Dingman, Sandra and Ed Gold and Jeff Cooper Ph.D. Jeff, I know as a brilliant man who has been in the patient safety industry before anyone of us nonmedical people ever heard the term. And Jeff was there to see me accept it. (photo right)

Linda Kenney, the Executive Director and founder of MITSS is a friend and a colleague. She started MITSS because of her own tragic experience during surgery and turned her organization into a partnership of healing for patients, families and the providers after an adverse outcome. The audience was filled with medical professionals, hospital administrators and community members who want to help make a difference.

Linda has taken time away from her own organization to see that others, doing similar work are recognized. The lack of competitiveness and commitment to patient safety shows the character of the woman behind MITSS and this award.

Finally, there was a very generous $5,000.00 check behind this award donated by RL Solutions. I spend hours and sometimes days writing grants for $5,000.00 for PULSE of NY just to be turned down and here, I just had to show up for a dinner! This is a company that not only says they support the work we all do in patient safety, but is willing to put their money up to prove it!

When I listened to Sanja Malaviya, President and CEO of RL Solutions (left)introduce me, and read off all that I have accomplished, it made me realize that I feel good about the work that I have done in the past 12 years to help improve patient’s safety, build partnerships and offer support to the patient, family and community who experience medical injury - or fear for their safety.

But, something was lacking in the introduction. The work that I have done and all my accomplishments have not struck Long Island or New York hospitals yet. The people I worry about most, and care for so deeply, have barely been touched by my work. I still don’t feel “safe” in our local hospitals when we do not have enough information locally about patient safety.

What are the safety measures and what can we, the community or customer of the health system do for our safety when using a local hospital? As I teach the public about patient safety and the need for partnerships, it seems like such a slow process. I may have been involved in the movement of patient safety but what are we all doing, in partnership, to keep us safe? As long as it’s a secret, we won’t know and we can't help.

Don’t you want to know?

Making Meatloaf

The Meatloaf Recipe

What does making meatloaf have to do with patient’s safety? Let me explain.

If you make a wonderful meatloaf dinner and a friend asks for the recipe, they may wonder why theirs doesn’t come out the same.

When you share your recipe, you are telling the listener about meatloaf as you know it. If the listener uses your recipe, your information about how to make a meatloaf, it will, in fact, give them the same outcome. But what if the listener’s meatloaf doesn’t taste the same as yours?

Well...when you gave the listener your meatloaf recipe, the information was filtered through three basic areas of learning and perception: life experience, trust and expertise.

The listener heard what you said, but may have processed the information differently than you intended. For example, you said to use a pound of ground beef, an egg and a cup of bread crumbs. The listener heard you but processed the recipe as flavored breadcrumbs, ground sirloin and a large egg. If you suggested a packet of onion soup mix, the listener might have processed it as Lipton Onion Soup Mix. You may use another brand. The listener was processing the recipe through her or his life experience with ingredients or other meatloaf recipes.

Let’s say that the listener is your friend and wanted your recipe and trusted you, so they did not question your recipe. But they went by their own life experience. For example. the listener’s expertise may be to use flavored bread crumbs instead of plain and sirloin, not chuck, even without you telling them to do so.

By filtering information, the listener changes the information using these three areas of processing.
When a patient hears information from a doctor, the information is coming in from different people sharing the same information, in many different ways. Each time a patient hears about their diagnosis, how to treat a wound, or how to take their medication, they are being given different “recipes,” but everyone is expecting the same outcome. Each time the patient processes the information, he or she may perceive it differently and may not get the full “recipe” the way the healthcare professional expects and hopes.

To avoid this kind of miscommunication, following a conversation between doctor and patient, there needs to be a teach- back method used.

Asking the patient to repeat back what they heard is crucial for knowing if they understand what they heard, if they processed it the way it was intended, and if something may have been left out (like hearing flavored bread crumbs instead of plain bread crumbs).

The value of repeating back is helpful not only so the provider can be sure the patient heard correctly, but also it is a check that the provider may have left something out which he or she will catch in the teach-back.

Another way to be sure there is nothing missed is to have someone write information down while the patient and provider are in conversation. The writer, friend or advocate can make sure that there are no holes in directions. “Take your pill 2 times a day” is different than saying “take 2 pills a day”.



A patient who takes 2 pills at the same time, instead of in the morning and at night will not get the same response from the treatment but may in fact interpret taking the pills by filtering the information.

Next time you are given instructions and the results do not come out as you expected, think of “Making Meatloaf”.

Why You Shouldn't Be a Patient's Advocate?

Who Shouldn't be a Patient's Advocate

Not everyone is meant to be a patient’s advocate. Sometimes it can take a whole community or a few different people, with different skills to help. You will often read about what an advocate should do. But there are some things they should not do. Although there is usually a place for everyone to help, there are some very specific things the patient’s advocate should not do.

Here is my list of the top 10 reasons you should not be the patient’s advocate.
You should NOT be a patient’s advocate if:

1) You are “self appointed”. The patient needs to have a say who they want with them when they are sick or injured. Just because you want to do it, doesn’t mean the patient wants you there. A spouse may be the best comfort for the patient but also may make the patient nervous when addressing medical professionals. A spouse, parent or friend who is too aggressive may just upset the situation. Have the conversation about being an advocate before it is needed; similar to discussing being a healthcare proxy.

2) You play “can you top this?" A patient’s advocate should not be talking about their own problems, aches or pains. He / she should not say things like “When I had that surgery…” or “When I used that medication”. If a patient wants your opinion, they will ask, otherwise bite your tongue. Keep your stories to yourself. It’s not about you.

3) You can’t “just” listen. Don’t interrupt, let the patient share a full thought and idea. Even if they stop to think and it takes what seems like a long time to finish a thought, don’t finish their sentences for them.

4) You are set in your ideas and opinion. If you don’t think the patient should have that surgery or needs the procedure, unless the patient asks for your opinion, you shouldn’t give it. You may want to instead encourage the patient to get a second opinion, help with research or learn why a patient wants the surgery or procedure being recommended. If it’s because the doctor said so, explore how you can help seek additional recommendations from medical professionals.

5) You want to tell the patient “you should…”. To help someone who is sick or injured is not to tell them what they should do, but instead, offer to help them do it. Instead of saying “You should get another opinion” say something like “do you want me to help you find another doctor we can trust for another opinion” or “Do you want me to do some research on that disease?”

6) You can’t read or write. The patient will be given many things to read. You will have to be prepared to help which may mean reading for the patient. Consent forms, instructions, or even the patient’s rights are all things that you, as an advocate should be prepared to help with. Writing instructions, the patient’s questions to prepare for the doctor’s visit means you, the advocate needs to know how to write clearly.

7) You are too emotionally invested in the patient. A parent or spouse may be the best person to comfort a patient, but may not be the best advocate. The patient’s family should be encouraged to call in someone from the outside who is less attached. Especially when there may be problems arising. Thinking clearly may mean stepping away from the situation for a moment. A parent who has not had enough sleep or a spouse fearful of their future may not be seeing things clearly.

8) You are afraid to speak up or get intimidated easily. Although this can be overcome with practice, if you are not going to speak up to the doctor if the patient has a concern or you see something that concerns you, do the shopping or bake a cake for the family instead.

9) You don’t have a plan. Just showing up at the hospital isn’t enough to be an advocate. You need to know why you are there. Did the patient ask you to do something specific? Take notes, organize medication lists, read consent forms? Know what you can do for the patient and then do it.

10) If you are using nursing or medical skills. If you are a nurse, and are providing nursing care, that is not the same as a patient’s advocate. Nursing care is a very specific skill and should not be confused with a patient advocate. A patient’s advocate should be building the relationship between the medical community and the patient (and patient’s family) not replacing that relationship.

You can register Here for patient advocacy training.

National Conference of Caring Clinicians

National Summit of Clinicians for Healthcare Justice

I recently spoke at the National Summit of Clinicians for Healthcare Justice Conference in Washington DC. The Conference was sponsored by The Association of Clinicians for the Underserved. I shared my work with the transgender community and their treatment when receiving medical care.

In most cases, they are treated respectfully but unfortunately, without knowing appropriate terms or being made aware of words that may be hurtful, it is easy to offend someone who has spent their life in seclusion of who they are. Also, there are still, at times where people who work in healthcare, not always in medicine who do bring their ignorance to work each day.

I had an opportunity to not only share my work through PULSE of NY but also the work of The Joint Commission and how TJC is helping Hospitals include patients’ and families in patient safety. The Joint Commission has heard the people and now narrowing it down to the LGBT (Lesbian, Gay, Bisexual and Transgender community). Because of my work with this community as an advocate, and as a Commissioner with The Joint Commission, I was invited to speak and participate.

I was first mostly impressed with this organizations mission “to improve the health of America's underserved populations and to enhance the development and support of the health care clinicians serving these populations”. This is an organization supporting medical professionals who not only spend their adult life helping people heal, but then go out of their way to find out how to help them not only physically but to support their individual needs as a human being.

I brought with me William (name has been changed) who shared his own life experience not only as a transgender man, but working in the medical field in a major suburban hospital. William started his presentation with how he has been labeled; a paramedic, emergency room technician, student, friend and up until a few years ago, a lesbian. He has struggled in his own profession to help people understand that he is still the same person on the inside but throughout his transition, did not receive compassion from all who he worked with in the medical field. Part of the challenge to anyone who has compassion is how do you help others who do not share it as passionately understand the importance.

After speaking to a group of about 30 clinicians, I was touched by a medical student who was compassionate and caring and came up to me following the presentation to talk about how much he appreciated us coming to speak to them. I asked him, “How would you react now to a colleague or superior who does not have the same compassion as you?” He had no answer. We still have a long way to go...................

The "Best" Advocate is not Always the Closest Person to the Patient

Is the "Best" Advocate Always a Close Friend or Family?

I counted over 20 times I was an advocate for a patient in the last three years since I have been doing bedside advocacy work. That’s just going to the hospital with the patient for surgery or a procedure or meeting the family at a hospital to help them navigate the medical "system". The same system that people who work in patient safety say is what fails the patient. “It’s not people, it’s the system”.

Much of my work can, or is done over the phone just helping people speak to the doctor, get answers they need and /or speak up for their safety or the safety of someone they love.

I don’t presently charge for my services because I consider it always a learning experience for me too. It’s how I get to see what is happening and how patients and their families act, and re-act to the care they need and receive.

I am confident. I know my job. I know my limits. I’m respectful but assertive. If I am planning ahead, I can prepare early and work with the patient and the family and friends long before the hospitalization. Sometimes over the phone, sometimes over lunch.

When a dear friend and confident was recently planning surgery, I, of course was going to be the one to take him, to another state and be at his side day and night.

Another friend reminded me, “Aren’t you the one who always says family or good friends may be too close to be a good advocate?” I laughed at the thought that a close friendship, close enough to be like family, would distract me from my “job” as advocate. It’s true, I teach advocacy often enough to know that if I couldn’t do it, I would ask someone else to step up. But I was confident that I wasn’t that close that I wouldn’t be able to concentrate and pay attention to the work I know so well.

Driving up to the hospital I parked the car. My friend about to enter the hospital and have his surgery gently reminded me, “Now I need you to put on your business cap for me”.

I looked him straight in the eye and said, “I didn’t even bring a pen”.

Drug Take Back Day

Take Back Drugs September 25, 2010

I was sent some very harsh words by someone I have known through my work for at least ten years. She read my support for the DEA’s drug take back day. It’s an opportunity for people to pack up medications they no longer need or want and bring them to a drop off point where they will be disposed of appropriately.

“Are Americans aware that we have two hands equipped to remove the drugs from our own cabinets and properly dispose in their home on-site receptacles?” She starts off in her e-mail.

Although I am confident that my medications thrown away would make it safely to the dump, I recently learned that just disposing of medications in the trash, may be causing a problem with drug abuse on Long Island. I could see how, if my teenage children, or their friends were drug abusers, they may get into the trash to get them. Even if they are not users, the selling price on the street can help with those late pizza nights, I'm sure.

“Use this wasteful money on a TV commercial re: dangers and a "task list" on how to properly dispose drugs by hand not via 4 tires.” She writes.

She makes a good point but I often see ads describing how to dispose of medications mixed with cat litter or coffee grinds. Anything to make the medications unappealing. But I’m not sure that works either. I’m surprised the environmentalists don’t get angry that we have to use gas to go throw away our medications.

But the fact is, many people do use this service and hundreds of pounds of prescription medications have been returned. In 2009, in New Jersey 9,500 pounds of painkillers, antidepressants and other medications were turned in that would have had a street value of about $34 million.

It’s a reminder that just because we don’t all agree on something, doesn’t mean it doesn’t work.



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Advocate Tips

Patient Safety Advocate Tips

Being part of someone’s surgery or hospital experience is an honor that I don’t take lightly. When it’s an illness being diagnosed or a long time ailment like a joint replacement, it is a big responsibility to be at the patient’s bedside. As a Patient Safety Advocate, my role is not only the patient’s comfort, but also to be sure policies are being followed and safety standards are being met. Although I can not guarantee the perfect results, I am confident the patient has a better chance when I’m there.

My primary focus is Family Centered Patient Advocacy, including the whole family and even friends and neighbors as part of the patient’s care team. I have heard from patients that they have no one to go with them to the hospital or to doctor’s visits when, in fact, there is a whole community looking for ways to help. Unfortunately, if the patient doesn’t speak up about who they want as their care partner or advocate, family members often appoint themselves and they may not be the best choice.

So, who is the best choice to be a patient’s advocate? Here are some things to think about and not take for granted.

• Someone who can read and write. We often assume that we would know who can read and write, but that’s not always the case. Reading and understanding consent forms, instructions and hospital literature is not as easy as people may think. When a patient is exhausted or overwhelmed, they need to be able to ask their advocate to read and explain information. The advocate should not be struggling to read the information themselves. They need to be able to read quickly, with ease and comprehend what is written.

• Someone who shows empathy. A patient wants to feel sorry for themselves and be the center of attention. Comparing surgeries, giving advice or playing “I can top that” is inappropriate. An advocate should never share their own experience with the patient unless it is specifically asked for.

• An advocate needs to be able to speak up – gently. The advocate must feel comfortable asking a doctor to wash his or her hands, verify medications and ask questions while being respectful of not only the professional staff in their position, but also as a human being.

• Be prepared to MYOB – An advocate does not need to know every detail about the patient. The more information that is revealed, the better the advocate can do their job but, the patient has a right to have privacy with their doctor (this should be encouraged) and keep some things private. The advocate needs to know how to work around private issues such as the patient who has an STD, had an abortion or has no religious affiliation. Some patients do not feel the need to share everything. This needs to be respected.

• An advocate should not try to replace the nurse or doctor. She should never use words “I will explain that to you later”. The advocate needs to build a bridge not put a wedge in it. Be wary when an advocate says to the patient “I’ll explain later”. The nurse or doctor needs to be encouraged to speak directly to the patient so there are no misunderstandings.

Medication "Safety"?

Dangerous Medications

Who can we “blame” for the drug problems on Long Island and maybe even in your community? There is a heroin epidemic and serious problems with prescription drug abuse. Some people try to blame the family, or society, do we need to blame anyone at all?

Before the patient ever leaves the hospital, discussions MUST include information about the medication such as, if it can be addicting, where to store it and how to dispose of it to keep it away from anyone who may want it to use or sell illegally..

Doctors should not be afraid to tell the patient if their medication may be appealing to someone who can get a few dollars for it on the street or use it without authorization.

Did you know a pharmacist or pharmacy intern must actually provide patient education:
• Before dispensing a medication to a new patient of the pharmacy;
• Before filling a new prescription for an existing patient of the pharmacy and
• If the dose, strength, route of administration, or directions for use has changed for an existing prescription previously dispensed to an existing patient of the pharmacy.

When you sign for your medication, you are actually signing away that right to counsel. READ what you are signing!

I picked up a controlled substance for my son from my local pharmacy. We never used this medication before but we had some warnings from the doctor about its side effects. I don’t know if it’s addicting, nor do I know if it can be sold on the street but I can tell you there was a large “COUNSEL, NEW DRUG ” alert which went completely ignored by the young girl behind the counter.

At a recent workshop hosted by PULSE of NY, we learned that a pharmacist is taught to ask: What is the name of the medication you are taking? How were you told to take it, and what do you expect to happen from taking this medication? None of this was asked, the pharmacists was never called upon, the young girl handed me the bag, told me to sign and walked away. I never signed.

I felt like I was just handed a gun.

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The Price We Pay

The Cost of Preventable Medical Errors

Would you be comfortable using a hospital knowing that 32 people died in hospitals from your state from preventable medical errors? We do it all the time. The only difference is in Oregon is that you can see the numbers.

Unfortunately, that’s all we are, numbers. In Oregon the number being reported to the public should be a demand for accountability. 32 people died but how many people feel the impact? That’s a number not being reported. The parents, children, friends and community left behind.

What about the financial loss to businesses? If half of those people held jobs for more than 10 years, they now have to be replaced. New employees mean training new people. These 32 people are no longer paying life insurance, but instead collecting it. The payout from one insurance company to 32 people in one year just from preventable medical errors can be devastating! You don't have to be a highly paid researcher to come up with some numbers to build a case. But no one is looking at these numbers….

We know that every preventable medical injury is tragic but we really don’t have all the numbers. If 32 are being reported, how many hospitals are not reporting?

Are there things the public could do to have helped prevent any of these 32 deaths? And how about the many injuries associated with medical care? As usual I bring many questions and often don’t have the answers accept to educate and inform the patient and their close community to help avoid these outcomes.

Legal Seafoods and Safety

Patient / Customer Safety and Satisfaction

I am not a restaurant reviewer but thought this trip was worth commenting on. I met a colleague for lunch at Legal Seafoods in Garden City, Long Island. It was not crowded and the waiter was nice enough, thorough, but not warm and fuzzy, which was just fine with me.

After taking our order, the waiter said “Oh, and by the way do you have any allergies we should know about?” My guest and I both said “no” but were both equally surprised at the question.

When the waiter returned, I asked him what the history was of that question. I pictured patrons passing out on their floor at some point struggling to breathe after eating shellfish.

He wasn’t sure, but assured me they have been asking that question for years. I wanted to know more. Asking for the manager, a very well dressed young man came by and introduced himself as the Assistant General Manager. I asked what the policy was if I were to say I was allergic to a food that I didn’t order. What if I was allergic something completely unrelated to seafood?

He explained that when a customer says that they are allergic, the waiter / waitress takes the order to the manager. The manager then goes to the manual and the chef, where it is checked for any cross contamination and the order is actually delivered by the manager to the customer for “assurance” that it was handled appropriately.

What a great idea that “patient’s safety” is now taken out of the health setting and reaching more people.

We tell people to keep lists on them of their allergies and medications and this is an obvious way it can come in handy outside the hospital or health setting.

Reading hospital material encouraging patients to write lists is often too late. This is a perfect reminder that people with health conditions, any kind, need to keep that information available - always. I still wonder the history of this policy and if other restaurants are doing this.

Do You Know Your Doctor?

Changing Physicians

A woman called me today about her doctor. She has been seeing the same gynecologist for 8 years and decided to look up his information on the New York Doctors Profile website, a NY State website and law I was involved in getting started in 2000 after 3 years fighting for it. She was surprised to find her doctor had 5 settled claims in 10 years. “One every other year” she told me.

She was now searching for a new doctor but wondered if she should be alarmed or even concerned and should she even bother changing doctors. Finding the PULSE of NY contact information in America’s Top Doctors book, she thought I may be able to give her some advice.

After reminding me numerous times that she did not want to hurt her doctor’s reputation or “put him out of business” she only wanted to know what to do and if she should be concerned, I asked her; “Why did you call me?”

She thought for a moment and said she was concerned.

“So” I told her “you don’t need me to tell you what to do”. If someone can’t have an honest trusting relationship with their doctor than that is not the basis of a partnership. She said many times that she has a great relationship and likes her doctor. This was making it difficult to leave this group of doctors. "They know me and have all my records" she told me. I suggested she can ask the doctor about the lawsuits. She wanted to know why so many. “Ask” I told her.

I suggested she look to see how many ob-gyn’s have settlements too. Very few she told me. “And if this doctor tells you that you are fine, will you accept that information or will you question everything he says?” She said she would have to go to another doctor to confirm what this doctor says.

The time to change doctors, if you want to change, is now before you are sick or in need of care. Find the hospital you want to be affiliated with and go backwards, if possible. Find the doctor who uses that hospital. If a doctor needs to do a procedure or surgery, that’s where you will be going. Don’t stop at one doctor. If you are a match, you will know it. If there is no energy, change again. There are no rules that you can’t shop for the right doctor.

And finally, just because a doctor has never been sued or has a great reputation, doesn’t mean things can’t go wrong. This is why being involved – always- is so important. I can’t refer people to doctors for this reason. We can’t guarantee things won’t go wrong.

Reading Your Consent

Read and Sign

The woman typing on the computer was speaking fast and friendly to the patient about his care and treatment he was to do at home. She then handed him a book and said “read this and sign here”. As I sat in the corner observing this exchange, I asked if the doctor was also going to sign this consent. “Yes” she said. “This just explains what the doctor already told him”.

I sat in the quiet of the room as the patient read and the medical assistant typed her information. ”You know” I said breaking the silence, “You never even confirmed that he can read.” She never looked up, she laughed and told me that if he can sign his name, he can read enough. “Besides” she said, “you’d never find a lawyer to take the case”.

I was shocked at the thinking of this young girl working in a prestigious doctor’s office. Not only was I surprised at her thinking but also how bold she was to share her lack of concern that this patient may not be able to read. She didn’t care if he could read what he was signing but then brought up a lawyer in this patient’s relationship with this physician and medical practice.

I let it go, I knew the patient could read but it was a reminder of how far we have to go.

Literacy at Camp?

Camp Literacy?

I just returned from a wonderful week away at a “religious” camp for families. As a Unitarian Universalist I know I live out the values daily in my work and family life, but wondered what it would be like to have fun with 200 other people with the same values. As a youth director for 2 years in my own congregation and knowing that this Pennsylvania camp called UUMAC needed a youth coordinator, I thought it was time I tried this long awaited “vacation” – working or not.

I purposely left my business cards and patient safety brochures at home. I was not going to talk about patient safety nor was I going to think about work for a week. In the weeks leading up to UUMAC, I found myself staying up late planning for the youths projects and getting lost in this new plan I had for myself.

Even before I arrived at UUMAC I was hearing terms I never heard before. I had to prepare for “vespers” which was the evening worship or “Night Owls” which I learned real fast about the all night partying that went on. “Show Case” was the end of the week entertainment when all the workshops put on a show of their work, songs, writing or just fun stuff about the people in the group.

When I realized that I didn’t know what some of these terms meant, or didn’t know what to do with them such as “bridging” where I knew that the teens were going to adulthood but didn’t know how it affected me, I asked questions. Some of the young people seemed to like to explain to me what it all meant. Others would sometimes shrug. It reminded me constantly about how we must all be willing to share information to grow.

The religion of Unitarian Universalism must often be explained so others will be interested and participate. But it kept reminding me about my work and the effort it takes for people who work in medical care to explain to their patients important, often life saving information.

Each time I asked a question, and received a thoughtful explanation, I didn’t feel the need to label myself. But yet the term health literacy has taken on a life of it’s own when it should be part of our regular communication between people. As I look back at the willingness of people to share information at a camp or in our daily life, I wonder why it becomes so complicated for this to happen in healthcare.

Nurses Aids or No Nurse Aids

No, Fainting is Not OK

I thought it was wonderful that at this hospital there were no nurse’s aids. Not because I don’t think nurses aids are a good thing, but because the registered nurse did everything for the patient and got to know the patient well. Better chance of good outcomes when less people are involved – or so I thought. The nurse is more responsible to her five patients because it is just her and her patient. She must tend to every detail and be more aware.

Accept what happens when one patient needs extra assistance. As in the case when a patient needs to stand up after being in bed for almost three full days? The nurse told us that she needed other nurses to help. One nurse will change the bedding while two other nurses will help her out of bed.

As we waited and waited, the three nurses finally came in. Now I’m realizing that as many as fourteen other patients don’t have any nursing available at all. Even if one of these nurses was a charge nurse, and was only there to help anyways, that still leaves nine patients (our nurse’s four other patients and the helping nurse’s five patients) with no nursing care.

As one nurse scrambled to make the bed – with my help, two other nurses helped the patient and then needed to spend time with her standing, cleaning getting acclimated to being out of bed. As time was ticking away, patient’s somewhere very possibly, weren’t getting their medications notes weren’t being written up and someone’s water may be empty. Patients very easily could have been neglected. Then, when the nurses went back to work, after about 15 minutes, I’m sure they now had much more to do.

If this happens for two patients a day, and since this patient had to get up another time later and walk, how much lost patient care time is there? It may add up to hours in a day.

I shouldn’t be surprised than that on two occasions, the patient under my watch fainted. Unfortunately, the second time was as she was preparing to go home. This caused additional blood work, testing and costs. It became apparent that the patient was probably just dehydrated and, after days on her back with only standing and walking slightly two times a day, she became lightheaded.

How could this have been missed by the overworked nurses? Very easily. Should I have done something differently? Absolutely! After the first time the patient fainted, the nurse’s reaction was that it can be expected. Because of the lack of mobility, the nurses explained she may feel faint. But I know the bed was tilted for awhile so the blood would not rush all at once. Fainting should have been taken more seriously by me, her advocate as well as the nurses the first time. I should have insisted someone check her for dehydration (although not being a medical professional I don’t need to know what the problem is, I do need to make sure the problem – and fainting is a problem, is addressed) Nurses should have informed the doctor and everyone should have said “no, fainting is not ok” but an aid may have been better able to pick this up and spend more time recognizing this. If this patient was hurt in the fall, at a cost to the hospital, I'm sure changes would be made.

Still Problems at the Bedside

Pennsylvania Bedside Patient Safety

One thing for sure is that anyone who works in healthcare doesn’t want to be hospitalized in the month of July. That’s when the new residents start at teaching hospitals. The new, never before touched a patient residents with the title “Doctor” before their name.

I was relieved to learn that the patient I was going to spend a week with in a Pennsylvania hospital this week was not going to be a teaching hospital but instead, a small rural hospital where everyone in the hallway says “hello” and nurses know the patient because there are no nurse’s aids. Instead, registered nurses are there who help each other and each other’s patients.

This seems like a good thing and for comfort, it is. This patient has a private room and I was given a recliner to sleep on and access to linens for me and the patient as well as the microwave and refrigerator for my comfort.

But, what does this say about safety? Nothing. Comfort and friendliness has nothing to do with safety, accept it made me, as the patient’s “friend” more comfortable speaking up about my discomfort.

Some of the things I noticed, and questioned were; The nurses never check arm bands because they only have 5 patients. They must have felt that they know their patients. When I asked about this practice they told me they always check, I never saw them check.

I had to ask the nurses, each shift to be sure that the medications are brought to the patient in the original wrappers. When I asked the nurse when I arrived how medication was distributed, and she told me she empty’s the pills into a cup at her nurse’s station, I thought I had entered a time machine – backwards. She agreed to bring the medications in their original wrappers in the future but this request had to be repeated each shift.

To have a cup of pills with no labels is not only dangerous for the patient, but for the nurse distributing them.

There is no comfort in seeing patient safety problems happen when sitting at a patient’s bedside. Knowing that qualified and caring nurses are still taking chances with a patient’s life, I have to wonder what kind of training they are getting in patient safety.

Leadership & Body Language

Leadership Choices

I met with a physician administrator at a hospital recently. I know him primarily through my work in patient safety. I have learned over the years it becomes easy to notice physicians or administrators who are serious about patient safety and /or patient centered care.

The first thing he did was pull his chair away from his desk. The desk often acts as a barrier. He wanted to show me that there were no barriers and that we were “equal” when I came into his office. I have always admired this man for who he is, and now I was able to admire him for what he does.

He never looked at his watch. This almost became distracting to me as I started to wonder how long I was there and why he never looked at his watch. I started to wonder if there was a hidden clock behind my head and later learned there wasn’t. When I felt the meeting was over and left, I learned it was just about an hour. I would have never known that it was time to leave from him.

Finally, when his phone rang, he never flinched. He never looked at it ringing, never made a move to answer it. I was the only thing that mattered.

These behaviors are not instincts we are born with. When a phone rings it is an automatic move to answer it. These are learned traits that make someone special and serious about his or her work in patient centered care. It makes me realize that, as guests in the corporate world whether hospitals, doctors offices or another, we should expect nothing less .

Advocacy

Patient Advocacy Training

As I prepare to spend a week at an out of state hospital with a friend who is going for surgery, I reflect on all I have learned about patient safety and what I can do to be sure she is safe and receiving the best quality of care. Sadly, I recognize that her fate is ultimately in the hands of the professionals who will be treating her.

There are many things I can do for her comfort, the things I teach patient’s families to do. As a professional, things I would rarely do, as a friend, things I look forward to doing.

Making sure the patient is comfortable but also, spending the time to disinfect anything that is touched. The door knobs, TV remote and side rails to the bed. These things may be cleaned before a new patient comes in but also need to be done often while the patient is there. Especially, when there is surgery and wound care. Being sure the patient understands treatment, after care has all her questions answered. I will be keeping lists, lots of lists. She will only have to think about getting well.

Each time I do this it is a learning experience. There is no school for teaching patient advocacy as much as there is for living it. When I teach it next time, I will be using experiences I have from this trip, I’m sure. Positives and negatives that will become part of my next lesson.

I am deeply honored to be part of this experience. I am a lucky person.

Conversation About the Diagnosis

The Dreaded Diagnosis

I sat with the mother and her son when the doctor was about to give his diagnosis following a series of tests. The young adult child’s physical appearance and need for help with small tasks like caring for himself, cutting his food and even walking were becoming more and more apparent. A series of tests and doctor visits became a tradition for this mom and her oldest son.

She requested I attend the follow up visit with the neurologist to be an extra set of ears. I planned to take notes and help think of questions during the conversation and following it. None of us had any warning to what the doctor might say.

He listed many possibilities including Lupus and Multiple Sclerosis. I was quit taken back now picturing a person in a wheelchair or with a walker. I looked at the mothers face for an expression – there was none.

The doctor allowed for time to ask questions, take notes and while the mom had her conversation, I wrote down my questions. I didn’t want to interrupt her train of thought. I was, after all their guest. As the mom searched for words, I wondered to myself how someone is supposed to come prepared with questions after this diagnosis. One can’t prepare themselves.

As the mom searched for time and was thinking of more questions, I asked “may I ask some of my questions now?” She agreed to allow me to ask my list of questions and that gave her time to clear her mind and capture more time with the doctor. When I was done asking, she once again had her list of questions. The first sign that she was ready to resume her conversation, I stopped talking.

She needed to plan for additional tests and follow up appointments. After that there would be additional opportunities to meet with the doctor and do some more planning..

Being alone in the doctors office, especially when you might hear bad news, is never a good idea. But, knowing who the helper might be is just as important.

The Symphony and Leadership

Learning Leadership Through Music

What can a symphony orchestra teach us about leadership? Plenty, as I learned this week at the NPSF 12th Annual Congress in Orlando Florida. Over 700 attendees sat in the magnificent ballroom amongst many of the instruments to take part in this plenary session ready to kick off this meeting full of patient safety leaders.

As Conductor Roger Nierenberg led the orchestra, The Music Paradigm, through some magical sounds the audience of medical professionals, hospital administrators, patients and families sat amongst many of the players as the symphony shot music through our very soul. There to learn about patient’s safety, as a recent (just 2 days) graduate of the American Hospital Association, National Patient Safety Foundation Patient Safety Leadership Fellowship, I wondered if we were going to learn more, or just be part of this magnificent sound.

Abruptly, the music stopped. As the conductor, wearing a tuxedo with a white bow tie asked us all to choose a member of his orchestra to watch. Watch how they move, see where their eyes go and just pay attention to one. The music started again and I watched one of the violinists.

As the conductor called on audience members, they shared comments like the intensity of some members of the orchestra. As the 90 minutes like this went on, I saw how this was a powerful lesson in leadership, motivation, encouragement, observation and planning.

“Notice the skill of their hands, their movement” he told us. “but still it is one voice”. Teamwork and coordination is what makes this sound as spectacular as it was. As he encouraged members of his orchestra to play their own way, we were listening for how it sounded when each of them got caught up in his or her own “expertise” instead of participating as part of the team.

The conductor asked one musician on the trumpet to play a piece of music. The sound was only one note. “imagine studying music for thirty years” he said “and that’s what you have to do?” The audience laughed, a nervous moment as we all recognized ourselves as often feeling underutilized but still we must keep the spirit. No one here can separate from the team.

He brought some audience members on to the stage so they could hear the sound differently. They could see the whole orchestra as they were scattered throughout the audience. Another time he brought a physician up and held her hand while she conducted. Allowing him to gracefully move her arm, she explained later that she was there only to support. The best leaders are often there only be a supporting role.

Leaders are dedicated. There are many dedicated people who can stand out and lead. Then there are those who are part of the team who will do as little as possible without getting caught. He asked one of each of the instruments to play their best. The rest he suggested would get sloppy. Be lazy but look like you are working hard, he told them. As the cameras scanned the orchestra I could see some were not working as hard. The music still sounded fabulous. He knew the music sounded good. He explained that the goof offs get hidden in the crowd. “dysfunction hides while the best carry it for the others”. It just makes the hard workers work harder.

The Infectious Disease Doctor

The First Sign of Infection

I gave a presentation yesterday to a group of caregivers for mentally and intellectually challenged children and adults. The presentation was our Family Centered Patient Advocacy Training recognizing that these caregivers, who almost all were social workers, are often the support and / or advocate for the entire family. When they bring a client to the hospital, their skills are perfect for the patient’s needs but what about helping the hospital staff understand their needs and the patient’s safety?

When we discussed the part about infection, I explained that if there is any sign of infection or possible infection, that they need to insist on seeing an infectious disease doctor. Pharmacists, I explained specialize in medication and many doctors have their specialty but an infectious disease doctor specializes in infections.

A nurse in the audience, who was obviously in the business a long time commented. “Infectious disease doctors are always called in if there is an infection” she told us. She explained that it is the policy of hospitals to do that. I reminded her that if policies and procedures were always followed, I wouldn’t be there talking about errors and how to help prevent them. She continued expressing her concern that I may be poisoning the audience (my words not her) with what I was teaching.

Just earlier, a young woman asked how she can find out who the doctor in charge is when her family member was hospitalized. “I kept asking who was in charge and the group of doctors said they are all in charge working together”. I explained that this was probably the resident physicians protecting the attending physician from allowing you to get to him or her. There is an unspoken rule in healthcare that the residents should handle the problems and questions.

Thankfully, a woman with me, who is part of our Patient Safety Advisory Council, just saw last week the movie about Lewis Blackman who died because of just that reason. Lewis’ mother tried to get the attending physician to look at her son who was declining fast but instead, the new, young doctors, with less experience allowed Lewis to slip away until it was too late. I told the group about the movie and assured her that there is always someone in charge. If one person won’t take responsibility, keep going until you end up in the CEO’s office.

Back to the nurse; I let her know that some hospital staff, maybe the residents trying to protect the valuable time of the infectious disease doctor, may try to handle the problem themselves. With all good intentions, the residents may unknowingly be causing more harm by not getting the “experts” in fast. She was not satisfied and explained further, “Almost always the infectious disease doctor is called in”.

“That almost” I told her, “is why I am here”.

A woman on the other side of the room added to the conversation. Her father went in to the hospital last November for hernia repair, got an infection with all the symptoms, but it took a week to call in the infectious disease doctor. Her father died a short time later.

I rest my case.

Hand Wahing and Patient Safety

Oh No, Another Hand Washing Story.......

Well, I'm pretty sure offended another medical professional. I hate when that happens. I am generally a nice person and would never purposely hurt someone’s feelings – even if I didn’t like them. But when this nurse came through like a whirlwind and took the patient’s temperature I couldn’t stop her.

When she reached for the tools to do a throat culture, I jumped into action……..

“Excuse me, you will wash your hands first right”? Saying anything else, delaying the words “wash your hands”, and she would have torn through the huge q-tip wrapper to be used for a throat culture and, as far as I’m concerned, possibly contaminate it.

“I washed before I came into the room”.

“You touched the pen and the clip board. I’m sure they weren’t washed”. I felt the tension rising and saw her body tighten as she put down the still wrapped tools.

As she walked over to use the antibacterial lotion, she told me in a tense voice “I’ve worked in the emergency room for 30 years and never got anyone sick and never got sick”.

I wanted to say she didn’t know that but realized she was defending her action of not washing - so I let it go.

“I’m sorry if I offended you” I told her.

She said she wasn’t offended. "It takes a lot to offend me".

She has been doing this a long time. Still, I could tell that she was upset.

When she completed her task, and left the room I got a “high five” from my young buddy that turned out to have a pretty bad infection which ended him up in this after hour’s clinic.

When the doctor arrived to do the complete exam, I told her “Before you even start, I am going to ask you to wash your hands before you examine him, even though I’m sure you did.” She looked at me oddly. “But” I went on “ I think I offended your nurse so I am giving you advance warning”. The doctor walked over to the sink and scrubbed up – no offense taken.

President Obama Nominates Dr. Don Berwick

Don Berwick's Nomination


President Obama has nominated Dr. Donald Berwick president and chief executive of the Institute for Healthcare Improvement to head up Medicare and Medicaid programs. CMS, with a budget in the trillions, it is the largest U.S. healthcare agency and will undergo major changes following the healthcare system Obama recently signed into law.

Medicare and Medicaid are the federal medical programs for elderly and low income Americans and pending senates confirmation, will extend coverage to millions more Americans with Obama’s healthcare plan.

Dr. Berwick, a professor of pediatrics and health policy at Harvard, a leader in patient safety, led the nation in the 100k Lives Campaign which was aimed at giving hospitals and medical professionals the tools to improve outcomes by using proven methods that work.

There is no doubt that patient safety advocate’s, like myself are excited about this nomination. Even with just the nomination, patient safety is on the radar again. Every chance to discuss the importance of safety and quality in healthcare is important. This has started the conversations going again.

But, I do have concerns if Dr. Berwick took this position. Will he be able to keep safety and quality as the center of his work? I am afraid not. He will be taking on a big job and working for the government. If he worked for the government as a Patient Safety Officer I would say he would and could do great things for us. But he won’t. He will have many departments, a huge budget and many people to answer to. He will, in fact have to dilute his work in patient safety to cover other areas.

As I look for my own work in patient safety (yes, I still need a job), I am careful not to forfeit my values. There are diseases and people who don’t have healthcare but does that mean they don’t deserve safe care or quality care? If we ever get to a place that we are glad we have medical care but we don’t need to monitor their work or demand safe, quality care, hospitals will become an even more dangerous place to be.

I am mixed on my excitement on Dr. Berwick’s possible move. I am excited over this recognition for him but I fear if he takes this position, we may have to start looking for another Don Berwick to keep us safe.

Patient Centered Care

Patient Centered Care; Born With the Knowledge or Learned?

As I sat next to the elderly patient, who was being prepared for surgery, I watched doctor after doctor come in to speak with her. Alone, if not for my presence, I realized how overwhelming it is to be bombarded by questions by many different strangers, especially when she left her hearing aids at home, as she was told to do.

The surgeon, a physician’s assistant student, the registered nurse, a surgery resident, the anesthesiologist all came through with their own list of questions.

“When did you last eat?”

“What are your past surgeries?”

“What are your allergies?”

“What are your medications?”

The list went on and on. When it seemed to come to an end, the PA student lingered. She chatted with the patient about the patient’s family, travel and life. The surgery resident soon came over to listen and also engage in conversation. Though extremely tired from tests and procedures earlier that morning, the patient was happy to tell stories of her very full life.

I had the opportunity to ask the young medical staff, still in training, if they have ever heard the term Patient Centered Care. They both shook their head and replied “no”.

They asked what that was and I explained that it is treating the patient, not as a disease or illness, but as a whole person. Actually, there are many definitions, that’s the one I chose to use at the time. It is being practiced and talked about in the “patient safety world” I told them.

An article in Family Practice Management explains Patient Centered Care as “treating patients as partners, involving them in planning their health care and encouraging them to take responsibility for their own health” While an article written for Robert Wood Johnson Foundation describes it as “speaking with your patients in their preferred language—at least during critical moments”

By listening to the patient for the extra 5 minutes, these doctors were learning more about the patient’s life and lifestyle. This may be a big part of how the patient will heal after surgery and how she will be cared for. The better the outcome for the patient, the better reputation the doctor will have.

These young people in medicine are learning about the body and how it works, how it fails us and how they can, with their incredibly difficult and long hours of training, can help fix it. I credit them for their skill, their commitment to healing and helping.

I hope that when they realize that their listening skills, empathy and compassion is not just a trait they were born with but also presently a taught skill in patient safety, often not taught until much later in their career, they will continue this practice of Patient Centered Care. I am just surprised this lesson was coming from me.

Collaborative Law

Collaborative Law and Patient Safety

Patient safety isn’t just for medical professionals anymore. My entry on March 24 was about my invitation by a medical malpractice law firm to hear Dr. Paul Gluck speak to a room full of almost all lawyers. Besides a few administrators for healthcare and a small handful of doctors, that audience of about 100 people were all lawyers.

Today I spent the day in California at a symposium organized by Kathleen Clarke, who over the years has become a good friend from long distance and a great colleague in the patient safety movement. Kathy practices Collaborative Law. Although she has always talked about it and written about it, I never really understood it. So, when I found out I could come out to California and support her work as well as learn about collaborative law, I counted my pennies and hopped on a plane.

Dr. Mark Graber Chief of Medicine of the LI VA Hospital was a speaker. He started his presentation talking about the day we met 10 years ago at a National Patient Safety Foundation conference in Missouri. He said that it was our conversation there that got him interested in patient safety. I didn’t realize that. He told the audience of about 80 people, mostly lawyers, that he said to me after I spoke at that conference, that I must have been glad that the lawsuit about my son was over. I said it was never over. I then told him it wasn’t about the money and he said he never knew that that was how patients and families felt. But, in most cases it’s never about the money. I didn’t need the money. No more birthdays or no college for my son who no longer was alive. What I needed was answers, acknowledgment and possibly a conversation with the doctor who, just days earlier, I trusted with my son’s life. I needed to feel trust again.

Dr. Graber talked about disclosure and how important it is to talk to patients and / or their family immediately following a bad outcome. Organizations practice open disclosure in many states. It makes them obligated to investigate the problem he told us. Only about 5% of hospitals actually practice disclosure.

Actor James Woods was live with his lawyer on video feed to talk about the settlement of his case against Kent County Hospital. The CEO of Kent, Sandy Coletta opened the discussion telling the story of how Michael Woods died in the Rhode Island Hospital that she herself said was in really bad shape when she took over the job as CEO following the death of Michael Woods. A sincere apology, not taking the advice of the hospital lawyers and instead, showing genuine empathy and remorse for the untimely death of the 49 year old father of two, is what was needed by James Woods to end this long drawn out lawsuit. That, and the development of the Michael J. Woods Institute at Kent teaching patient centeredness.

I wiped my eyes more than once while listening to Sandy Coletta tell her story. Partly jealousy that this family had acknowledgment from the hospital while others never get that. I also felt relief that we have moved so far ahead that this hospital administrator actually was open and honest I also realized that we treat these people like heroes because they are being honest about what happened to a patient.

Any way you look at it, collaborative law needs to be our future. Put in the room all interested parties; lawyers, doctors, patients, families and have a conversation. Put all interests up front, gather all the information, develop the options and negotiate a resolution. Everyone is needed at this table and needs to be a “collaboration”. How have we forgotten this part after all these years.

Patient Safety?

Patient Safety For All

How do you tell a mom whose child is strong and violent that she must also remind the healthcare providers to wash their hands? How do you tell a mom whose child is scared of loud noises, bright lights and is nonverbal that she must also make sure her child is cared for safely in the hospital? Now tell a parent who can’t control their child’s outbursts that they will have to sit in a waiting room in a doctor’s office with other “normal” children and control her own. These are some of the conversations I had this week with the people of local community organizations learning about patient safety.

Many people are avoiding the healthcare system because of the problems they see going into it.

How do you tell a young woman who doesn’t speak English that she can ask for a second opinion when she can’t even explain what the problem is to the doctor? A woman shares the story of how, when she first came to this country and didn’t speak English, she struggled with the nurses aid in the hospital who made her get up, even though she was in terrible pain. The nurse’s aid didn’t understand how much pain she was in and the wound from her abdominal surgery opened causing severe problems to the patient.

A woman, who doesn’t speak English, tells me, through a translator that she had a lot of pain. She could only get an appointment for three months later. She had a urinary tract infection and was pregnant. The infection spread and they took the baby. She said she felt the baby was alive but no one understood her. Through her sobs she told the translator that she couldn’t make herself understood the urgency of her pain. She still has kidney problems from neglecting the infection.

These are just some of the stories I am hearing about our medical system as it relates to patient’s safety. Focus group after focus group I am learning more than I can possibly teach these people who only want what we all want, safe, quality healthcare. Story after story I am informed of how communication or lack of training keeps patients and providers from focusing on the patient’s individual needs.

Whether disabled, lack of language skills or any number of reasons patients don’t seek care, we need to know that we, as a nation must focus in on the individual needs of the patients before our whole system collapses.

We all want and need affordable healthcare but if the words safety, and quality aren’t part of the dialogue, the costs will rise worse than we can ever imagine and everyone will suffer.

I was invited by Steven Pegalis Esq. of Pegalis and Erickson to attend a lecture at NY Law School in Manhattan hosted by his law firm. More and more medical malpractice firms are showing concern for patient's safety. The speaker, Dr. Paul Gluck is a founding member of the National Patient Safety Foundation and an OB/GYN from Florida. Hardly the person I would expect to see on the agenda as a guest of a medical malpractice law firm. Although I don’t always agree with Dr. Gluck he has always been respectful, friendly, warm and welcoming to me as we both are on the board of the National Patient Safety Foundation and I thought it would be nice to surprise him.

Expecting this to be an interesting evening, I invited Steve Goodstein, a registered nurse, professional mediator and a board member of PULSE to join me. Assuming there would be conversation around law suits and blame, I was hoping we could see what doors would be opening for alternatives to litigation through this program.

I was greeted warmly by Dr. Gluck and was genuinely glad immediately that I made the trip to see him. The room was filled with attorneys with a scattering of medical professionals, judges and hospital executives.

The information Dr. Gluck shared, how errors happen, the history of patient safety and studies of how no one is usually at fault seemed to be better suited for other medical professionals. I’m not sure this was an audience who wanted to steer away from lawsuits.

I was told ahead of time that I would be called upon to speak following the presentation so I was a bit concerned when I was called upon to introduce myself and then told that the opinions would come from the “professionals” in the audience. Suddenly, with this new audience, my opinion wasn’t important. But, when the conversation following the presentation went to the lawyers vs. the doctors, I couldn’t be stifled any longer.

No one was asking the patient if they wanted to sue, no one is giving them (us) a choice. I explained that when my son died I had no choices, sue or don’t sue was it. Lawyers didn’t want to take the case of a little boy who died from a tonsillectomy and they still don’t. There is no financial compensation to cover the cost of a lawsuit. So, no one talks about it, no one learns and no changes are made to improve future care.

When a lawyer greeted me later and said he would have taken my case, I snapped back, as respectfully as possible, “what if I didn’t want to sue?” I didn’t need the money. There were no more birthdays or holidays. What I needed, and so many patients and families need is answers.

First, I explained, we need to know what the term “I want to make sure it never happens again” means. To patients and families it can mean making changes. To others it means hitting them in their pocketbook.

Either way, it needs to be the choices the patient and / or family makes, not society looking in at half the story. Maybe some doors will open - even in New York.