Saturday, October 30, 2010

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”.


Thursday, October 14, 2010

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.



Thursday, October 7, 2010

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...................



Friday, October 1, 2010

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”.



Friday, September 24, 2010

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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Tuesday, September 21, 2010

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.


Tuesday, August 24, 2010

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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Friday, August 20, 2010

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.


Saturday, August 14, 2010

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.



Monday, August 9, 2010

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.