Everyone Matters in Healthcare

Not "Just" a Receptionist

A friend of mine with lung disease had gotten sick enough to be evaluated for a lung transplant. When she called one of the best centers in the country, the receptionist was horribly rude to her. She was given "the run around" and became very discouraged without ever getting an appointment to see the transplant team. Over the next few days, after several unsuccessful and impolite phone calls with various receptionists, my friend was never able to get the appointment she needed or the respect she deserved. It had been such a bad experience she gave up and went to another transplant center in a neighboring town.

The center in the neighboring town did not have the same level of expertise but the receptionists were very nice. My friend was willing to work with a less skilled team in exchange for not having to deal with disrespectful receptionists.

Logical or not, this proves a major point: everyone matters in healthcare. As a receptionist, it may not feel like you have the same power as the transplant surgeon but, in some ways, you do. As the front line, the face of the institution, you have the power to make or break the initial patient experience. You are very important. You can make a patient feel safe and cared for. You can make a patient feel alienated and like a burden. You can influence our decisions just by the tone in your voice. Never underestimate the power of a kind word.

House Keeping!

Every morning in the hospital I awoke to those words: "House Keeping!" In would come a member of the hospital's house cleaning staff and make lots of noises emptying trash cans and mopping the floors. As a sick person who craved peace and quiet, it drove me nuts. I needed that to be re-framed for me.

Recently, I heard Dr. Victor Dzau of Duke Hospital tell a story about the importance of the house keeping staff. He said when he asks his hospital cleaning staff "What are you doing?" the answer he hopes for is not "Cleaning this room" but instead "Saving lives." In an environment with so many infection risks including MRSA and Staph, just to name a few, the role of the house keeper becomes crucial. They stand between the patient and a potentially deadly infection.

We all need to be recognized for our value and this includes the house cleaning staff. What do you think they level of difference might be in a person's dedication and performance if they are, A. cleaning a room or B. saving lives. I know which job description would make me feel like an important part of the care team and motivate me to work harder!

It is important to find ways to honor everyone in the system because, in unique ways, everyone really does matter. The next time you hear the words "House Keeping!" try to thank them for the important role they play in patient safety.

As Kevin Sowers, President of Duke Hospital states, "Having patients and families tell the staff what we mean to them changes the culture of healthcare."

Being an advocate doesn't only mean speaking up about what has gone wrong, it also means enforcing good practice by speaking up and telling those caring for you that they have made your life better. Everyone matter, don't forget to tell them that!

The Difference Language Can Make

DNR vs. AND

A DNR (Do Not Resuscitate) form is a common component of the advanced care planning documentation. This legal, binding document states that a person does not wish to be resuscitated in the case of cardiac or respiratory arrest.

There is a movement in the hospice world to change the DNR document to an AND form. AND stands for Allow Natural Death.

The AND form serves the exact same purpose as the DNR form, so why bother with this name change?

Think about the difference in the language here.

Do Not Resuscitate. Does that leave you with a feeling that there is something that you could do, you have just chosen not to? Does it feel like you could have done more but, instead, you gave up? This language gives patients and families a mixed message.

Allow Natural Death. This reminds us that death is natural; something that is easy to forget in the emotional frenzy of modern medicine. This language gives us permission to not pursue resuscitation, a medical intervention that can sometimes lead to more complications and pain.

It is not surprising that this motivation to change the DNR terminology came from pediatric hospice professionals. It is difficult for a parent to "not do everything" and the DNR language comes with that implication. The hope is that the AND language will feel less like a judgement and give families more room to contemplate the best course of action for the one they love.

Different but Synonymous:

A similar example of how language may frame a situation can be found in actual professional titles. In recent years, hospice organizations began to distinguish comfort care from end of life care by creating a separate team of professionals called palliative care. This new language was developed as a way to comfort those who were not ready for the end of life journey--and therefore not ready/eligible for hospice--but were very ill and would benefit from a team specializing in pain management and other serious complications.

Unfortunately, over time the terms hospice and palliative care have become synonymous. When lay people are told they are being referred for a palliative care consult they usually associate that with end of life. The idea to change the language so as to create a distinction between comfort and end of life care has been unsuccessful. Patients and families tend to respond the same way to both.

So what is the solution? Some might suggest a continued effort to educate the public on the difference between palliative care and hospice. Others are advocating for a new name altogether. One possible name I have heard, "The Family Care Team," is far less technical and may be more appealing to patients and families not yet ready for hospice. No matter what, it is easy to see from these two examples that language can sometimes have a major influence on how patients and families feel about a particular option. It can even determine the success or failure of a service.

How Do You Ask Me How I'm Doing?

The way we use language can change the patient experience. In one institution, professionals have been trained to no longer initiate communication with patients in the traditional way of saying "How are you today?" In our culture, that is a rhetorical question and is usually met with the knee jerk response "I'm fine. How are you?"

In a healthcare setting, this opening interaction between patient and professional has the potential to be an important interaction for gathering data. If the primary question remains "how are you?" the patient will likely not respond with useful information. Just by training professionals to ask "How has your experience been so far?" to those patients in the hospital, the language has already greatly reshaped the value of the conversation. This is a very different question, is not rhetorical, and holds the space open for honest and important communication.

It's so simple, right? But it's so complicated. Healthcare leaders, professionals, patients, and families have to look at what has become routine language and ask themselves how a slight change in vocabulary might create a higher level of communication and sharing of pertinent information. Language impacts the way we frame things in our mind, even when we are not aware of it.

Take some time and think about other examples you have of medical terminology that hold the potential to box you in to an impression, a belief, or an expected course of action? What other language can you use to open the lines of communication and have a shred mental model with those around you?

The Professional Chain of Command: An Unofficial Chart

The Chain of Command in hospital and clinical settings can be very confusing. Traditionally, the official descriptions of healthcare hierarchy is separate for nurses, physicians and other professionals. However, it benefits the patients to understand where these professions might fall together. This graphic is not based on scientific data but rather observations and opinions of professionals working in healthcare and from those receiving care. This chart is primarily modeled for teaching institutions.

Do you know the roles of all of the people (and others) included in this chart? If not, here are some definitions that may be some help.

Healthcare Administration: leaders who oversee the administration of hospitals, hospital networks, and health care systems.

Some of the titles you may recognize for the administration include: Chancellor, Vice Chancellor, President, Senior Vice President, Chief Executive Officer, Dean, Executive Director, Chair

Attending: an authorized practitioner of medicine, as one graduated from a college of medicine or osteopathy and licensed by the appropriate board. This includes:

Surgeons: a physician who specializes in surgery

Hospitalists: A physician, usually an internist, who specializes in the care of hospitalized patients.

Sub-Specialists: a physician whose practice is limited to a particular branch of medicine or surgery, especially one who, by virtue of advanced training, is certified by a specialty board as being qualified to so limit it

General Practitioner: a physician whose practice consists of providing ongoing care covering a variety of medical problems in patients of all ages, often including referral to appropriate specialists

Fellow: General Surgeons & Internal Medicine physicians training for subspecialties

Chief Resident for Surgery or Medicine: a senior resident physician who acts temporarily as the clinical and administrative director of the house staff in a department of the hospital.

Resident: a graduate and licensed physician receiving training in a specialty with 3-4 years experience, depending on area of study

Physician Assistant: certified by an appropriate board to perform certain of a physician's duties, including history taking, physical examination, diagnostic tests, treatment, and certain minor surgical procedures, all under the responsible supervision of a licensed physician

Nurse Practioner: authorized to practice across the US and have prescriptive privileges in 49 states. NPs also take health histories and provide complete physical examinations; diagnose and treat many common acute and chronic problems; interpret laboratory results and X-rays; and provide health teaching

Intern: An advanced student or recent graduate who assists in the medical or surgical care of hospital patients and who resides within that institution in the first year of residency

Charge Nurse: the nurse assigned to manage the operations of the patient care area for the shift. Responsibilities may include staffing, admissions and discharge, and coordination of patient care.

Nurses (RN): a graduate nurse who has been legally authorized (registered) to practice after examination by a state board of nurse examiners and who is legally entitled to use the designation RN.

Nurses (LPN): graduate of a school of practical nursing who has been legally authorized to practice as a licensed practical or vocational nurse (L.P.N. or L.V.N.), under supervision of a physician or registered nurse

Most of the above definitions were provided by:

medical-dictionary.thefreedictionary.com

For these and more clarification about professional titles visit this website

Not Always as Simple as It Seems

Major Medical Error:

I was in the hospital when I saw a story on television about Jesica Santillan, a young woman who had gotten a transplant at a nearby hospital. At the time, I was both a recipient and awaiting my second transplant. It's easy to understand why I had a strong reaction to this story of a woman whose transplanted organs turned out to be the wrong blood type. I was horrified that such a mistake was possible and devastated for the girl and her family. An event that should have marked the beginning of her freedom resulted in the end of her life.

I was not the only one who was shaken to the core by this tragedy. The story quickly became international news. The public blamed and shook their heads. The media villainized doctors and the hospital, calling it a "bungled" transplant. Individuals and communities mourned. Everyone wondered "how could this happen?"

I'll admit, I was a sheep in the heard of people with judgments and criticism. But what I did not think about, and could not know, was what really happened and was going on behind closed hospital doors as a result. As the story rumbled on, it became a constant on television, newspapers and magazines. The case became more complicated (and lost its focus) due to the discovery that Jesica was an illegal immigrant. This only served to add to the complexity, drama and issues the public had to weigh in on.

Years later, I have a better understanding and regret my willingness to not question the media's medical witch hunt. What I did not think about then was the pure devastation, not only for the family, but for the professionals caring for Jesica. I like to joke that "it took a village" to save my life through transplantation. Jesica was no different and there were many physicians, surgeons, nurses and other personnel involved with getting Jesica to that fateful day in the operating room. Not one of those professionals had the intention to do harm. The nightmare happened to them too.

In cases like this one, there are many places along the way where errors are made. From the weather that day to the lack of an electronic data base for potential recipients, this error occurred due to a combination of system inadequacies and particular circumstances. It is easy to say after such an event to say that the system should have included a series of checks along the line for donor/recipient matches but, before Jesica, this kind of error had never happened and no one would have predicted it. It was "the perfect storm" and system issues that once seemed more like individual annoyances collided together to create one massive mistake.

It wasn't as simple as the media made it seem.

After this medical error, Jesica lived roughly two more weeks. During this time, the hospital staff worked with her family to provide the best care and attempted to remedy the mistake with a second transplant. As a part of an effort to collaborate with the family, they kept some details private and only gave information to the media as the family felt comfortable in doing so. This added fuel to the media's fire and professionals, in addition to dealing with this sad and fragile situation, also had to cope with members of the media entering the ICU in costumes and taking unauthorized pictures. Most of the staff members were able to power through this crisis but some could not bear seeing their faces on TV in addition to processing the emotions of such a painful event.

There may be no comfort for Jesica's family in knowing that this mistake was the beginning of a major overhaul of procedures and protocols for this hospital. The media will likely continue to frame the incident as a soap opera with villains and victims. I, however, am able to see this with different eyes and hope you will too. Jesica's death was nothing short of a modern day medical nightmare. At the same time, no individual involved was solely responsible. For this we must blame the faceless system and ask, what is wrong with the procedures and protocols? How can they be changed?

As the hospital website states; "None of us will ever forget the profound sense of loss with the death of Jesica, and none of us wants to relive an outcome such as occurred here. We are committed to providing our patients with the very best available medical care with compassion. We are committed to learning from this event, improving the system, and sharing that information with others. And, we are committed to earning the continued trust of our patients. Jesica's memory compels us all to accept nothing less."

Major Medical Reorganization:

Give me a tool and I want to use it. Show me a tool for healthcare systems and I tap my foot impatiently and ask "Why aren't they using it?" It doesn't always work that way.

For an individual to implement a tool, philosophy or technique, it takes education and the decision to incorporate it into their life. For a family, it may take further discussion and some practice but, with commitment from all involved, the implementation can take place fairly quickly. For a large system, like a medical center, this is not as simple as education, discussion and commitment. It takes detailed planning and reorganization. In fact, it is so complex, there is an actual science dedicated to it.

Systems science is an interdisciplinary field of science that studies the nature of complex systems in nature, society, and science. It aims to develop interdisciplinary foundations, which are applicable in a variety of areas, such as engineering, biology, medicine and social sciences.

When I learned in the TeamSTEPPS training about "bedside handoffs," I got very excited. By definition, a handoff is the transfer of information (along with authority and responsibility) during transitions in care. Handoffs include the opportunity for the incoming professional to ask questions, clarify and confirm information about the patients they will be caring for. The bedside handoff takes this process and moves it to the bedside, allowing the patient and family to hear what information is being passed and offer any needed clarification or addition pertinent information.

Shift change is documented as being a key area for communication break down which can result in errors such as; inaccurate medication prescriptions, inaccurate evaluations, longer lengths of stay, and increased use of laboratory tests. When I heard about bedside handoffs I imagined two nurses by my bed discussing my case and was thrilled to have one more way to meaningfully participate in my own care. I immediately began making the patients and families I worked with aware of this option and encouraged them to request a bedside handoff if they were not already implemented in their particular hospital.

Months after I had begun my Bedside Handoff Crusade, I had the opportunity to hear a high ranking leader discuss bedside handoff implementation in his healthcare system. He began to discuss the lines that needed to be drawn and professionals that did and did not need to be targeted for bedside handoffs. Critical staff members include more than just nurses. Bedside handoffs were important for residents, attending physicians and respiratory therapists too, just to name a few. How many professional handoffs should a system expect a patient to participate in during the course of a day? How realistic is it to expect such a high volume of professionals to be able to organize themselves around many beds on many floors before leaving for the day? What about the professionals who leave at night, should patients be woken up to participate in shift change discussions in the middle of the night?

It isn't as simple as I made it seem.

Sitting and listening to the discussion about mapping, training and personnel shortages, my head started to spin. For me, as an individual, the answer remained the same: I will continue to advocate for bedside handoffs. Wait, let me clarify. I will continue to advocate for the nurses changing shift to do bedside handoffs. As for all of the other key players, I humbly respect the complexity of this system-wide discussion and am anxious to hear how the leaders find the best practice for using this useful tool.

A Need for Change Comes with Some Ramifications:

A 15-month study by an Institute of Medicine (IOM) committee reviewed the relationship between residents' work schedules, their performance and the quality of care they provide.

"The Institute of Medicine study provides the clear evidence to prove what we have long-believed is true—fatigue increases the chance for human error," said AHRQ Director Carolyn M. Clancy, M.D. "Most importantly, this report provides solid recommendations that can improve patient safety, as well as increase the quality of the resident training experience."

After this study, changes were made.

1. Limiting the resident’s work week to 80 hours

2. Limiting continuous time on duty to 24 hours (with 6 additional hours to complete all tasks)

3. Requiring 24 consecutive hours off out of every 7 days

While this structure seems perfectly logical and reasonable to the average person (80 hours a week is s till a lot!), this is major change in the ways hospitals and medical training centers have traditionally done business. This new rule has not been easy to implement. There are issues this new rules brings up that may not be obvious to patients and families. Here are a few:

1. Because increasing patient loads, the reduction in residency work hours has forced programs to create new and inventive ways to schedule patient coverage. This is not always as reliable as everyone would like it to be.

2. While patients and families understand the dangers and difficulties that come with residents working long hours, in some circumstances, the new rules may cause friction between staff and patients/families. The reduction in hours means more faces coming and going which feels like less consistent care.

3. These rules impact the medical schools as well. Because of these changes, it may be necessary to increasing the length of residency training as well as the number of medical residents. This would represent a major financial burden to an already strained healthcare system.

So, once again we see, it’s not as simple as it seems.

This very logical and humane decision is an obvious benefit to both the physician in training and the patients. This change signifies a dedication to decreasing medical error but does not come without its own set of complexities and organizational re-arranging.

As patients and families, we are most often experiencing healthcare within the walls of a clinic or hospital room. What we may not be able to see from the exam table or hospital bed is the large picture. Even when a non-controversial decision is made, it may have unpredictable fallout. The cause and effect can be extremely challenging to manage.

It is our job to keep providing feedback, keep letting the leaders know what is working and not working, while remaining aware that it may not be as simple as it seems. When the system isn’t working, we have to keep finding ways to have our voices heard and keep squeaking until we get the grease. Ideally, we will remain aware that Rome was not built in a day and view System Advocacy as a long-term project. Partnering with a whole system can require patience but when policies are implemented that make our care better and safer, I hope you’ll feel like it was worth the wait.

Following a different model

Crisis is often our catalyst for change. When it comes to healthcare, we must strive to not follow this model. We must work to be proactive.

As both patients and professionals, we worry about outcomes. However, all we can control is our preparedness, our level of awareness and our behavior.

We must learn the required skills and information before we need them. We must practice our conversation techniques before we have to have the conversations.

Effective healthcare advocacy requires a new model; a model of facing difficulties before they happen.

One Psychological Strategy for Partnership

Most healthcare professionals begin their careers, value their careers, and stay in their careers because of The Noble Cause; the desire to help people. At the same time, this noble cause is an ideal perspective that, due to the human limitations, can not be sustained at all times. We must remember that the intention for good is at the root of our caregiver's motivations and yet, we may benefit from appealing to their humanity.

To expect our professionals to always have the energy and emotional stamina to be coming from the place of The Noble Cause is unrealistic. Try putting yourself in their shoes and ask yourself, "If I were my healthcare provider, in this situation, what would be in it for me?" How can partnering in this moment make their life easier, give them valuable professional experience/data, or ensure a reduction in medical error?

This is just one representation of the phrase "meeting people where they are." Sometimes, we may achieve our goals by slipping into someone's else's shoes and looking at a situation strategically rather than idealistically. Even the most loving and compassionate care providers get tired and that's ok. We can meet them where they are. Can't we?

The First Circle of Advocacy: Call to Action

Turning the Rig Around:

Healthcare culture is shifting. Who is at the front of it, do you think? No, it's not the government, even with the new changes in healthcare legislation. It's not the many non-profits out there trying to help patients. It's not even the healthcare providers dedicating their lives to helping the sick. Patients and families are leading this shift in culture.

Who else is more invested in the need for changes in healthcare? Who is more insightful on what works and what is lacking? Who else more desires open and effective communication with healthcare professionals? Who is crying out and asking the community for support, for understanding? Who turns to the government and says "look at my life, is this how our country wants to treat the sick and dying?"

Cultural shifts do not happen overnight. The changes that have taken place, are taking place, and will take place are not like a speed boat. They won't happen by one quick choice to turn the wheel change direction. Instead, these changes are like a large oil rig in a small waterway. The turn has to be made so slowly it might, at times, be impossible to see with the naked eye. It has to be done so carefully so that little or no damage is done in the process. This change happens slowly, but it is changing.

What Leading Looks Like:

If you are a patient reading this, you may be thinking "How can I be a leader? I don't have the training my doctors have!" If you are a family member you may wonder "How could I possibly take on a role as leader when I am so overwhelmed just caring for my loved one?" If you are a professional you may be skeptical and worry "What if all of my patients try and 'lead' my practice, won't that be chaos?"

"Leading" may be a misleading term. It is important to set as a foundation of this discussion that no one is asking a professional to not trust their own judgement, training, skill, talent, and experience. This is not about having patients take over hospitals, ignore the opinions of their teams, or have families demanding unreasonable plans of care. At the same time, this is not about holding tightly onto old roles and habitual ways of interacting. Moving forward into the age of Participatory Medicine, this is about become more mature in the way we approach healthcare.

Call to Action:

I have never met a patient or family member that didn't think healthcare needed an overhaul. From bedside manner to medical errors, patients and families are rarely shy in sharing their "war stories" and expressing their disbelief at personal medical fiascoes. This sort of discontent can be used one of two ways: it can cause us to lose faith in the system and assume a defensive posture or it can inspire us to be the harbingers of change.

If we want to have our voices heard, we must take our roles seriously. When the question "What medications are you on?" comes, it is no longer acceptable to answer "The blue one and the little pink one." We need to know our medication names (generic and brand), the dosages, the reason we take them, and the potential interactions and side-effects.

If we want to have our voices heard, we must take our roles seriously. Instead of talking about the dissatisfaction we have about a certain interaction or particular individual, we must talk TO the person responsible. Partnership can not happen when the parties involved are not relating directly to each other.

If we want our voices heard, we must take our roles seriously. Some healthcare professionals fear giving patients and families too much access to information. We must be respectful of what we do not know. At the same time, we can help professionals see that when we learn how to read valuable data, we become stronger partners in care, not the hysterics they theoretically imagine us to be.

If we want our voices heard, we must take our roles seriously. We must ask of ourselves the same things we demand of our professionals: clear, concise communication, compassion, and respect. We must hold ourselves to a similar standard that we hold our professionals: to work in partnership, as a team. We must work through frustrations and personality issues for the best healthcare experience possible.

We must become humble, polite, persistent squeaky wheels. We must become responsible partners in our own care.

System Advocacy: The Challenge for Patients and Families

How do we know what we don't know? How do we find out what we need to find out if we don't even know it exists? How do we ask the questions without knowing what we are looking for?

This predicament can be found in many areas of life. It also arises in many areas of patient advocacy. Perhaps it the most prevalent in the second circle of advocacy: System Advocacy.

Within any healthcare system, there are a few potential challenges:

1. Lack of Information: While health systems work primarily the same way, subtle differences may trip you up. Variations in language, protocols and programs may be cause for confusion and frustration. More so, you may miss the opportunity to take advantage of a valuable service because you didn't know it existed. With these subtle but meaningful differences in healthcare systems, getting the important information we need can be a challenge. It is vital we find ways to be system advocates and get our needs met no matter which system we happen to be navigating.

2. Patient Safety: Since the Institute of Medicine's 1999 study placing the number of US deaths per year due to medical error in hospitals at 44,000 and 98,000 overall, hospital systems have placed a large focus on patient safety. Great strides have been made with valuable programs, changes in philosophies, and general awareness. Systems are working hard to make healthcare a safer endeavor, but there is still room for improvement. It's time now for patients and families to join the fight and partner with their providers and their systems to improve quality care and decrease medical error. Without patients and families on the team, there is a limit to the success systems can have with regard to decreasing medical error. The time for partnership in the name of safety is now.

Potential Challenge to Understanding a Valuable Tool:

In the New Age of Healthcare, one can find many groundbreaking and inspiring initiatives within healthcare systems. Some of these initiatives will be "in plain view," patients will interact with these initiatives directly in their care. Other initiatives will be behind the scenes but will benefit patients and families just the same.

The problem arises when there are programs in place that can benefit patients/families but only if they are aware of the program and how it may be of help to them.

In 2004, the Institute for Health Improvement launched six initiatives to improve patient safety. Among those was the invention and implementation of a Rapid Response Team. This Team is a small group of highly trained specialists usually including a physician, nurse and respiratory therapist. There may be variations in which additional professionals, such as social workers or nurse practitioners, are members of the RRT.

The purpose of an RRT is to provide a safety net for patients, families and healthcare professionals. If a patient is experiencing changes in their health that are concerning, the RRT can be called in to assess the situation. This is most commonly beneficial for patients outside of the ICU who have just had surgery or are at risk for a cardiac event.

Sometimes a family member will be able to pick up on a subtle change in their loved one's skin color or tone of voice that a professional, not knowing the patient as well, could miss. Since family members often spend the most time with the patient, they are more closely monitoring their loved one and have the potential to catch a serious health episode before it becomes a crisis. However, it may not always be easy for families to convince the healthcare providers that what they are witnessing deserves immediate and critical attention.

If a family feels like their concerns are not being taken seriously or responded to quickly enough, they may be able to call the Rapid Response Team themselves. This is only true, obviously, if the hospital has an RRT, the family is aware it is available to them, and the health system allows a non-professional call to be placed to the RRT.

Hospitals that have Rapid Response Teams welcoming of family calls will have different ways to "publicize" this aspect of patient care. Some may post signs in the hospital rooms. Some may rely on the nurses to inform the family upon admission. Some may simply assume the patients and families understand this option is available to them.

The challenge here is the same in any scenario where a relatively unknown aspect of care has been implemented: making sure the patients and families know about, understand and feel comfortable using the RRT. In this case, assuring patients and families understand RRT is no easy task. This is a relatively complicated concept that requires a somewhat in-depth discussion of when it is appropriate to use, how to use it and who can use it. A button on a lab coat or a sign on the wall will most likely not be sufficient for patients and families to grasp and be comfortable with the RRT model.

Another challenge in the Rapid Response Team model, and other programs like this one, is a lack of easily recognizable language. Health Systems will often take a program like this one an adapt it to fit their philosophies, protocols, and staff/patient population. This can mean tweaking the actual implementation. It can also mean changing the name so that it is unique to the health system.

In the case of the Rapid Response Team, a healthcare system may use this model under a different title such as the "Advanced Clinical Assessment Team." On other health systems one might find a complete overhaul of the title such as "Condition H." While this language may be clear to healthcare professionals, these titles may not be recognizable to the average person.

In cases like this one, even if patients and families come into the situation with knowledge of the role of a Rapid Response Team there is now an added layer of distance and possible confusion. By renaming it, it requires education or an orientation for something previously understood by a different name. In today's fast paced healthcare, we can not be confident that healthcare professionals will have time to explain this vital information to patients and families. In times of illness, worry, and overwhelm, we can not rely on patients and families to read and comprehend written materials given to them.

While it is obvious that programs like this one are both needed and appreciated, one has to wonder why health systems use language that is less accessible to the public. In our busy healthcare systems, it can be a challenge for professionals ti find the time to really explain the programs that are available to patients and families.

As a system advocate we must:

• Pay attention to the subtler opportunities like signs in the hospital room and buttons on lab coats
• Ask direct questions about what programs are available to us
• Get involved with councils and advisory boards within our system to help professionals think through better ways to get this type of vital information to the patients and families who can benefit from it

Patients Partnering for Patient Safety:

Physicians and other healthcare professionals face a dilemma: the paradox of patient desires. On one hand, we want full disclosure and on the other hand we only want to hear good news. This is not a conscious phenomenon, both come from equally valid places.

Because being sick (or loving someone who is) carries with it such a profound feeling of being out of control, we want to be at least be in control of the information. "I may not be able to control what is happening to my body, but at least I can understand what is happening and all that is being done to treat it." With this kind of comprehension, we can feel like we have some power and participation in our own illness process. If we are kept in the dark and are missing information that later is quite relevant, we might be angry at our providers for not keeping us fully in the loop.

At the same time, being sick (or loving someone who is) is like standing on an ever-moving sandbar. One minute the earth feels steady and there is hope that the tides have ceased in shifting the ground beneath our feet. The next minute, an unexpected wave has taken the sand away and left us floating, hoping to find our footing again. We listen to our physicians differently and when we hear words like "but" or detect a change in vocal tones, our hearts jump into our throats. We are on pins and needles and sometimes, we don't want to (or just can't) hear bad news at that moment. The water is rising, the sand bar is moving, and we fear we may drown.

This is a tough dichotomy for professionals. In a system where there are real dangers and in a circumstance where things can shift and change on a dime, how can they be expected to navigate this paradox well? Perhaps part of the answer comes in both parties letting go of any idea that this can be done well (without the ability to read minds or have ESP.) Perhaps part of the answer comes in asking patients and families to have compassion for the professional's dilemma. Perhaps part of the answer is continue to train our professionals on effective communication.

There is another possible piece to this equation: preparation.

In aviation, there has been a big focus on safety since World War II. Getting passengers where they are going as safely as possible is an obvious priority that requires detailed check lists and other safety measures. It is the history and diligence of the aviation industry that has inspired those in medicine to take a closer look at their model and attitudes. It is the aviation model of safety that provides some clues as to how to address the patient paradox discussed earlier.

In aviation, the ego of the pilots has been trained to put safety above all else. The annoyance of passengers going through security has to be ignored in order to serve the greater purpose. As advocates focused on safety, perhaps we could benefit from this tried and true model.

We can become our own patient safety officers. We can watch and observe those around us. We can learn ways to speak up when a doctor doesn't wash his hands, when a phlebotomist does not sterilize our port before drawing blood or when a nurse is interrupted while counting out meds.

To become our own personal patient safety officer we must:

1. Learn the safety risks to look out for

2. Embrace techniques (in this book) for addressing a safety concern

3. Practice our safety observation and communication skills

Plane Ole Crashing

I was sitting on the plane with notebook and pen, jotting down thoughts I had for my book in progress. We had not yet taken off and the stewardess was going standing in the aisle showing us how to use our seat belts and where to find our flotation devices. She pointed above my head to where the oxygen masks would drop down in the case of decreased cabin pressure.

I was doing my best to tune her out and concentrate on my chapter on patient safety. After all, I had heard this so many times I could practically give the stewardess's shpeel myself. At that moment, a brain light bulb went off and I looked around the cabin at my fellow passengers.

She was saying things like "in the case of emergency..." and talking about "water landings." Wait a minute, she was talking about what would happen if we CRASHED. Why were the people around me not panicking? Why was everyone so calm? Why was I so calm?

Perhaps it is because we had been in enough planes to know an emergency like the ones being described was unlikely. Perhaps we were a group over very optimistic, positive thinkers. Perhaps, it was because what she was saying was nothing new.

We were desensitized to the stewardesses crash instructions because we had heard them over and over. We knew what to do. Did that mean we would not be scared out of our minds if the plane ever began to fall from the sky? Of course not, we would not be so calm then. Did it also mean that we had been trained sufficiently so that when the oxygen masks fell we would no to place the yellow mask over our nose and mouth and place it first on ourselves and then on children? Yes, I think so.

In healthcare we work hard to avoid the unpleasant topics. This is perfectly understandable, of course. Illness is intrinsically scary and we instinctively seek to not add to that emotional weight. While this approach may be helpful in the short term, it can be harmful in the long run.

What if we began educating our patients and families as soon as they got on board? What if, even before serious or chronic illness, we talked about advanced care planning? What if we starting training to be effective advocates before we went into the hospital or had a medical crisis? What if we were able to reach a place of preparedness long before we had to place the oxygen over our nose and mouth?

What if were were ready when illness hit?

This is my hope. This is where we are heading. This can happen if professionals and lay people agree to embrace the aviation model of safety.

Redefining Good

As children, we are told were are good when we are quiet and do as we are told.

As employees, we are considered good when we are quiet and deffer to the expertise of our bosses.

As patients, we are told we are good when we are quiet and don't question or treatments or those who treat us.

As advocates, we are good when we are not quiet, speak up, ask lots of questions, and (when appropriate) choose to not follow orders.

Being an advocate goes against the grain. In order to find our comfort zone as a patient advocate, we must first redefine "good."

Patient Safety Call Out

The Duke Hospital Helicopter Pilots have an important and sometimes dangerous job. They fly off of roof tops to go help very sick people in other facilities needing immediate and fast transportation to a major medical center. Sometimes they fly out to get life saving organs for soon-to-be transplant recipients. After a major accident, they may fly out to help the victims.

In addition to the inherent nature of their job as first responders and skilled healthcare professionals, there is an added layer in the expertise they must possess to be a helicopter pilot. During times of inclimate weather or other pilot safety threats, they have to make tough decisions. Given the importance of their job, it may be difficult to consider aborting a fly out. However, safety must be honored.

The Duke Helicopter Pilots have agreed upon a simple and concise phrase if they feel it may be too dangerous to proceed with a flight:

“This is stupid!”

Pretty clear, huh? That stops the line for sure!

Some nurses follow this model with another phrase:

“I need clarity.”

At some hospitals patients are given tools, like yellow cards, to signal they perceive a safety issue without having to say anything.

In my time teaching workshops, participants have offered their own patient safety call out. A few examples of those include:

“Whoa!”

“I don’t like this.”

“Stop!”

So, now it’s your turn. What will your patient safety call out be?

What is Wrong with this Picture?

I was excited to sit in on my first real healthcare reform committee meeting. North Carolina Senators were discussing some State initiatives for the healthcare budget, project funding, and policy issues around mental health and other health issues. I was interested to see the process, hear the discussions and be a part of the "audience."

My lobbyist tour guide, Jack, and I arrived early and took some of the first seats, ideal for a great view of the whole room. We watched people filter in and most had several people to greet. Serious conversations about bills that needed attention mingled with light-hearted conversations about children, vacation, and "finding a new career." Few people in the room were average citizens, like me. Primarily the room filled with professional lobbyists, the representatives, and their sponsored pages.

With no mental effort, Jack pointed out to me the major players in the room. He provided the organization(s) they lobbied for, their common position on their particular healthcare issue, and several key personality traits. It was fascinating but something in the back of my brain was itching. I continued to scan the room for a familiar face. After all, this was a discussion on healthcare and I had been around the block long enough to know a good amount of the "big wigs" in local healthcare.

None of the big wigs I knew were there. How could we be discussing these things without those in the field, those living these issues, weighing in? Where were the practicing professionals? Where were the head of the coalitions? Where were the advocates who watch over the benefit of their clients? They were not there, they were working.

It struck me in that moment what an insulated world this place of government truly is. The professionals pushing the agendas are not the same professionals living the experience of healthcare; from a professional or patient point of view. These conversations were lacking. They needed the input of these leaders. Something was wrong with this picture. There is a big, important disconnect between those making the policies and those living within them.

Political Advocacy for Beginners: Helpful Definitions

Coalition: Alliance of groups united for a cause. Some coalitions are independent; others who lobby Congress are affiliated with lobbying firms. (Examples: Coalition for Affordable and Reliable Health Care, End of Life Coalition, Pediatric Healthcare Coalition). Coalitions are required to disclose their members in their Lobbying Disclosure Act filings, per provisions in the Honest Leadership and Open Government Act.

Constituent: A resident of a district or member of a group represented by an elected official, One that authorizes another to act as a representative; a client.

Grassroots: Term used to describe action with a wide level of citizen engagement. Examples of grassroots advocacy include a union or association encouraging its members to contact a Member of Congress on a particular issue, typically with a particular policy objective in mind. Examples of other popular grassroots actions include letters to the editor, attendance at rallies, or signing petitions.

“Grassroots lobbyist”: This person is a “citizen lobbyist.” (See definition for “Grassroots,” above). Organizations such as the Sierra Club or the Heritage Foundation encourage their members to contact their Congressman on an issue, write letters to the editor, sign petitions, or attend rallies. These citizen lobbyists do not need to register under the federal Lobbying Disclosure Act if they only engage in grassroots activities. However, some states do require the disclosure of grassroots lobbying.

Lobbyist: Person who advocates on behalf of himself or a client to pass a law or to make changes to a bill being considered in a federal or state legislative body, or to help shape policy in the executive branch and its regulatory departments. Lobbyists can come from either the private sector or from a legislative affairs department in a federal agency. There are two types of lobbyists: grassroots and professional. The House and Senate includes in its "Guide to the Lobbying Disclosure Act" a definition of a lobbyist as: “any individual (1) who is either employed or retained by a client for financial or other compensation; (2) whose services include more than one lobbying contact; and (3) whose 'lobbying activities' constitute 20 percent or more of his or her services during a three-month period.” If this is the case, then this person must register as a lobbyist under the Lobbying Disclosure Act.

“Professional lobbyist”: According to the Lobbying Disclosure Act (LDA), this refers to a person who is compensated by an outside client or by his employer to lobby the government. This person typically engages in direct contact with elected officials.

Within this category there are two different types of lobbyists:

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In-House lobbyist: This person is employed by an organization to lobby on behalf of its own interests. Examples of organizations that would employ in-house lobbyists: AARP, National Rifle Association, U.S. Telecom Association.

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Outside (or contract) lobbyist: This person is employed by a lobbying or consulting firm and is retained by an outside organization to lobby on its behalf. Branches of Government: The Legislative Branch makes laws for State Government. It is made up of the Senate and the House of Representatives, which together are known as the General Assembly. The Legislature meets biennially and all members are elected for two-year terms. The Executive Branch of government enforces laws made by the legislature. The head of this branch is the Governor, who is elected every four years. Along with the Governor, the Executive Branch also includes the Lieutenant Governor, the Council of State, and many State agencies. The Judicial Branch interprets what our laws mean and makes decisions about the laws and those who break them. The Courts of the Judicial Branch are split into three divisions, the Appellate Division, the Superior Court Division, and the District Court Division The role of the United States Congress is explicitly defined and limited in the United States Constitution. The 10th ammendment states, "The powers not delegated to the United States by the Constitution, nor prohibited by it to the States, are reserved for the States respectively, or to the people." The Congress is comprised of two chambers: United States Senate United States House of Representatives