Sermon, Caring in a Crisis

I never thought of patient safety as a spiritual journey but it can very well be. I spoke last weekend at the First Universalist Church of Southold and my sermon was called Caring in a Crisis, How we can step up to help each other. Following,  is part of my sermon after I told stories of people’s lives who were tragically taken because of their medical care.

"They may all be alive today if the healthcare providers who cared for them took another road in their care. If they were more careful, more thorough or even more knowledgeable. No one meant harm, but harm from medical care is the 8th leading cause of death in this country. More people die from medical errors in hospitals than auto accidents, breast cancer and AIDS combined.

 Patient safety, only in the last 10 years is something that the public has become aware of. Hospitals and medical professionals have been aware of patient safety for many years. 

 As early as the late 1900’ Ernest Amory Codman was known for pioneering what is known as outcomes management in patient care. Codman was the first American doctor to follow the progress of patients through their recoveries. Each patient was followed up on for at least one year to observe long-term outcomes. He believed that all of the results should be made public so that patients could be guided in their choices of physicians and hospitals.

 In 1855 it is reported that Florence Nightingale recognized that soldiers were dying from unsanitary conditions and she paved the way for sanitary conditions in hospitals.

 In the late 1840's, Dr. Ignaz Semmelweis was an assistant in the maternity wards of a Vienna hospital. There he observed that the mortality rate in a delivery room staffed by medical students was up to three times higher than in a second delivery room staffed by midwives.

Students were coming straight from the autopsy room to the delivery room. He thought that the students might be carrying the infection from their dissections to birthing mothers. He ordered doctors and medical students to wash their hands with a chlorinated solution before examining women in labor. The mortality rate in his maternity wards eventually dropped to less than one percent.

 Now, in the year 2011, the Centers for Disease Control reports that as many as 100,000 people die from hospital acquired infections and as many as 2 million patients will be infected by a hospital acquired infection this year and in years passed.

 So what can we do about it? Talk about it for one. By acknowledging this problem, like any problem we can start to fix it. I dream about conversations about patient safety to be similar to families talking about breast cancer, seat belt safety or safe sex practices.
 How could something so deadly as medical errors and hospital acquired infections be so out of control? Patients and their families only recently have been involved in what’s now called patient centered care and the patient safety movement.

 I began my personal journey to patient safety many years ago when my only child at the time went for what was considered a routine tonsillectomy. Following his procedure he bled for a week and I brought him to different doctors and emergency rooms. Each doctor they said not to worry, he will be fine. 8 days later my son was to die at home, in my arms, a statistic that no one at the time knew existed. He bled to death from a tonsillectomy.

 My search for answers on how a child could slip through the system led me years later to national patient safety conferences by the medical societies and hospital associations. The medical professionals knew there was a problem, they just didn’t know, at the time that many patients also knew. I was going to help bridge that gap.

 And now, today, ten years later, healthcare providers have started including patients in patient safety by giving us tips on what we can do.

 One of them is to tell our doctors to wash their hands. With the numbers I just quoted, this sounds a bit unreasonable doesn’t it?

 It’s a start – its not the solution.

 As an adult, don’t you feel it awkward to be undressed on a table about to be checked by the doctor and we are supposed to tell him or her to wash? Isn’t this something that we are taught as young children? Wash before eating, before touching your food and now, we have to tell an adult to wash before treating us?

 But, the fact is they don’t always wash. They don’t wash before touching us after touching a doorknob or the clip board or shaking our hand. And yet we know it is supposed to be done and ironically - so do they. So gentle reminders can be seen to us, the patient, as a way to keep us safe and hopefully infection free. It has to be done or we may not be safe!

 I sometimes wonder why I feel so disrespected when someone in a white coat doesn’t wash. He knows that infections are a problem, why would he or she then purposely put my life in jeopardy by not using a simple safety technique like hand washing?

 But hand-washing is a small part of patient safety. Just as serious is diagnostic errors, medication errors and even falls in hospitals that cost patient’s their lives.

 PULSE of NY, is the first grassroots patient safety organization which started on Long Island in 1997 we are credited in books and articles for helping to start the patient safety movement  giving the patient a voice in 1996 – We started at the South Nassau UU Congregation as a support group for medical injury survivors and still meet there regularly to hold workshops and programs.


So, this small group of patient safety advocates which include medical professionals and community members decided we would develop a program that would encourage the family or friends of the patient, to do just that – speak up.


Patients are supposed to have their questions ready. But when the doctor says “You need surgery” or “you have diabetes” or cancer, we can’t as the patient, possibly know what questions we are supposed to be asking. Our heads will spin with thoughts, feelings and planning and easily forget what we are supposed to ask.

 Having a trusted friend or family member in the room and hearing the news with you, or at least immediately following it can help you sort out information, gather your thoughts or share in the shock.


You may be needed to drive her children to school, do the shopping and cook some meals. If your congregation is anything like mine, there’s a whole group ready to help. We can offer sympathy or should it be empathy. What is the difference?


Kerry O’Connell, a colleague of mine involved in the organization called Compassion in Healthcare, a world wide organization located in New Zealand describes the differences in Sympathy and Empathy this way:


Sympathy Can be purchased at Hallmark, Empathy, Cannot be purchased at any price,
Sympathy Given by Many, Empathy Craved by Many,
Sympathy Minimal emotional investment by the giver, Empathy Requires great emotional revelation by the giver,
Sympathy Leaves you indifferent, Empathy Leaves you warm,
Sympathy Brief pain relief, Empathy Lasting Healing,
Sympathy Quickly Forgotten, Empathy Relished Forever,
Sympathy Understood, Empathy Experienced,
Sympathy Offered, Empathy Shared,
Sympathy Abundant, Empathy Most Rare,

Sympathy Expected, Empathy Unexpected,
Sympathy Learned, Empathy Intuitive,
Sympathy Easy, Empathy Difficult,
Sympathy Acknowledges, Empathy Accepts,


Sympathy Mostly Talking, Empathy Mostly
Listening,
Sympathy Tries to solve, Empathy Relates,
Too much Sympathy can be annoying, Empathy Can’t have enough,


There is a place for people to offer sympathy to one another and a place to offer empathy. But not everyone wants to offer sympathy or empathy. Some people, I being one of them, want to spring into action. I usually can’t sit and feel sorry for you. Give me a job to do to make me feel like I am doing something.We, as a UU community are often willing and ready to be given our responsibilities to help others in need.

 Let’s take the 32 year old member of the congregation who has just told her few closest friends that she will need a hysterectomy and has a 2 year old child bouncing around the house.


Most people will be thinking about how to help her after her surgery. Food will be delivered and offers to babysit that little darling will pour in. But what about planning for the surgery? Whether she has a husband or partner, there are so many things we, as a community can do to help her prepare.

Ask if she needs help researching her doctor, the best hospital to use or what procedure is best for her. You never want to tell her about your surgeries, your friends hysterectomy or what hospital she should use. Even at the so called “best” hospitals, bad things can happen. You want to research the information that’s available.

 Offer to look into insurance, if she needs that, or a doctor who may give a second opinion – if she wants to. Ask about offering to sort out medical records, chart information or accompany her to the doctor’s visits so you can take notes.


Offer to list her medications, vitamins and any supplements she may take. Names of family and friends to call following surgery, a list of all her doctors, allergies and surgeries she has ever had. Help with advanced directives.

 If she tells you something doesn’t seem right, no one is listening or the care she is receiving seems substandard – please don’t use those words that can be deadly – “don’t worry”. Dig deeper. Chances are something is wrong!

 As one person wrote to me after we sat at a diner and made the lists; “Thank you, I have used the lists we made over and over again for all my treatment”.  


Another wrote about her advocate that I trained “As a recent widow, I was overwhelmed by the diagnosis and feeling alone and very vulnerable. My advocate accompanied me to my pre-surgical doctor visits and helped me to ask the questions I had discussed with her beforehand. She calmly recorded the various treatment options as they were proposed and was able to discuss them again with me later as I mulled over which treatment path I would take.”
 
While someone is in the hospital, for those of us who really can’t stay away, but feel awkward standing over the bedside looking at our sick friend in her pajamas, bring a gift basket of antibacterial hand and body wipes, antibacterial wipes for the room and a box of chocolates for the nurses. Then, when visiting wash all door knobs, bedrail, tv remote and nurses call bell. Leave the chocolates in the room so nurses and nurse’s aids and housekeeping must come in to take a treat. Your friends will be flocked by professional care.Ask if the patient has all the information he or she wants from the nurses or doctor. If not, take some notes and help the patient get the information. You can help build that bridge for the patient so he or she can concentrate on getting well.

 So, as we move forward in a world willing to help each other, don’t forget that there are many ways to help and take action when someone else may need us. I hope today I gave you some more tools to help.
Thank you. "

##

The reading, "What's in a Word" came from Compassion in Healthcare

Ted

About Ted



Ted



I have known Ted for most of his life. As a young boy, he was adorable with blond hair and beautiful blue eyes. He was always the quiet one between him and his full of life and mischievous brother, but something would happen to Ted when he would get in front of a microphone. He would sing, recite his own poetry or tell wonderful stories. Ted would light up a room with his sharp wit and charming personality. Ted’s mom, one of my dearest and closest friends raised the two boys on her own. I always admired how she held down enough jobs to just make ends meet but always had time to help someone else in need.

As Ted got older, and reached his late teens, something started happening. We knew he was always on the thin side, the opposite of his huskier brother, and he had trouble with high ceilings, too much noise and bright lights. We all just thought it was quirkiness about Ted that made him different, and in need of some extra attention.
In the last couple of years, Ted struggled to walk. His mom took him for physical therapy and had him diagnosed with tight hamstring muscles. He had a heart arrhythmia and spent the day as an outpatient receiving, at just 18 years old, a heart ablation. His eyes were troublesome and his visited two ophthalmologists who sent him for eye exercises. Then his speech started slurring and his mom realized that there were too many things happening. She saw two different neurologists who would send him for a battery of tests.
I sat with them as a doctor spoke about doing spinal and other invasive procedures. He wanted to “rule out” certain diseases – but why, I wondered, can’t someone just figure out what this is?

Ted’s mom, though exhausted from working full time and visiting doctor after doctor and bringing Ted for eye therapy, physical therapy and taking him out nightly for walks because of his fear that his legs would give out, wouldn’t give up. The final doctor, a neurologist did a blood test, and found that Ted has Mitochondrial Disease which results from failures of the mitochondria, specialized compartments present in every cell of the body except red blood cells. When they fail, less and less energy is generated within the cell.

Ted’s mom and I talk about why it took so long for Ted to be diagnosed. Was he being “mis” diagnosed?  Was there a breakdown in communication?  Why couldn’t the ophthalmologist find the problem or the first or second neurologist?  There is so little that can be done for Ted. He works hard to keep walking and is determined to stay out of a wheelchair. He is a brave young man who is fighting with every breath he takes. Ted wants to be independent but accepts help, and even seems to, at times, enjoy the attention. It makes it easy to love him. He allows us to love him. He has taken up a piece of my heart with every deep conversation about his future he allows me to look deeper into his soul as well as my own.

I keep thinking that it was his mom who pursued a diagnosis. He would have been dropped if not for the work she did to keep records together and compare notes. Ted’s pediatrician didn’t do that. It is up to us, the patient and the patient’s family or even friends to step up and help or we would all get lost in the system that would gobble us up and spit us out like another number we pull out of the machine at the deli counter.

Ted is teaching me about love and about life and about what is really important. The people who come through our lives each day all carry baggage but I find my mind constantly distracted by Ted’s future and what tomorrow will bring.

Meet Ted Here

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