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

Political Advocacy for Beginners: Lumping

In order to represent we the people, the people have to be put into boxes. As lobbyists and politicians hammer out issues and how to turn them into policies, generalities must be made. People are put in to categories and decisions are made based on what seems best for that particular "demographic." This poses many challenges for those making the laws, not least of which is how to break down the demographics into a manageable number of boxes. With such a large number of people being represented, there are many,many boxes. This, however, does not change the fact that these boxes may be too large.

In the time I was observing the senate, I witnessed several glaring cases of what I have labeled as "lumping." One discussion involved the rights of pharmacists to dispense, or not dispense, needles. The argument was being debated about "needle users," referring to both illegal drug users and diabetics. We had been lumped by our need and our activity with no consideration as to the purpose of the needle use.

It is important for healthcare advocates to understand lumping. While it is understandable that there can not be boxes for every person and every circumstance, this method should be monitored and noted. While some of the issues facing those with mental illness and drug addition may have some overlap, do they have enough overlap to lump them together? From an experiential perspective, the answer is "no" but they are often seen as the same for the purpose of policy-making. Similarly, those with chronic illness are lumped together with geriatric individuals and those who are blind and deaf are lumped in with the chronically ill.

Looking at these demographics from a purely procedural perspective, these lumpings might make sense. Looking at the actual experience, however, there are some significant differences. These differences make this demographic lumping cause for concern. While, as a chronically ill person, I may have some of the same long-term needs as someone with advanced age, I also have a higher investment in recovery and being active. If policies are developed with geriatric people in mind, how much focus is going to be put into integrating into the work force and other avenues for productivity? We face different issues, have different goals, and need different kinds of care. Lumping can be dangerous for those with chronic illness living by the rules set for those with advanced age.

Lumping is an inevitable part of the political process. Lines have to be drawn somewhere to represent large groups of people. If those groups are not paying attention, this inevitability can negatively impact lives. It is essential that political activists keep an eye out for how the boxes are being organized. If you are about to be negatively impacted by lumping, that is the time to use your voice and help the policy-makers see why the categorization is inaccurate and detrimental to a whole group of individuals. While it may seem obvious to you, this distinction may not be obvious to them. Remember, they are seeing this from a policy perspective. It is your job to help them see it from the real-life perspective.

Time Out for Cuteness

The canine love of my life, Jenny, enjoys a day at Doggie Day Care. All together now: "Awwwww!"

"Battle Metaphor" repost with new ending

After the unexpected death of a friend of mine, my sister made the comment that I have known more people who have died than anyone, especially young people. That's an unfortunate side-effect of becoming a part of "the community." When you have the privilege of meeting so many amazing people living with chronic and serious illness, either online or in real life, you may have to find ways to say goodbye to them. Or, one day, they will say goodbye to you. It hurts and sometimes it feels like there is too much loss to bear. Even so, I wouldn't consider taking a step back from "my people" because these friendships are valuable, not to be outshone by the difficulty of death.

This morning I was reflecting on the language we use when talking to someone with illness or talking about them after they have died. One primary metaphor permeates: The Battle Metaphor. We provide encouragement to those we love with phrases like "You're strong, I know you can beat this" and "Keep on fighting, you have come too far to let (insert medical complication here) take you." Likewise, we use similar terminology after death by saying things like, "She lost her battle with..." or "she fought a good fight."

When I think back on my days on the ventilator or my days living with end stage chronic rejection, I try to imagine how I might "fight" in those circumstances. Nothing comes to mind. It is a one foot in front of the other place to be. The "fight" is literally in "being." There is no effort beyond that. I don't know how I could have changed what I was doing to honor a wish to fight. Nor do I think, had I found myself in a place where I was too tired/sick to continue, there would be anything wrong in "surrender," yet another battle metaphor and one that implies defeat.

A few days ago, I was talking to my chiropractor who I have known since before my first transplant (10 years ago). He was marveling at how long it had been since my second (6 years) and asking me if I attributed the better outcome of the second set to anything in particular. My answer was medical in nature: "I don't know but I would guess it has something to do with a better chromosomal match and perhaps the fact that I had a Nissen to prevent reflux. They have linked reflux and chronic rejection now." He looked a little disappointed. "But do you think it has anything to do with your attitude?" he said, "It could be your positive attitude."

I struggled to not sound upset. "I have known too many people who had better attitudes than me, worked harder than me, and wanted to live as much as me, and they are gone. I can't take any of the credit." He was quiet and my mind kept turning. "But," I realized, "While I don't think a positive attitude can reverse an inevitable, physical decline, I do think a negative attitude can accelerate, possibly even begin, a physical decline." Is that possible? Can the results of a person's attitude go one way and not the other?

The battle metaphor bothers me. It always has. It suggests a level of control over my physical body that I simply don't have. It suggests a failure on my part when I am not able to "fight hard enough" to reverse a disease, a complication, my own death. It suggests triumph for "survivors," people who have won the battle. I don't want to be called a survivor because that, in context, makes my some of my friends losers. When I imagine someone telling my mother I lost my battle with (insert my cause of death here) I shudder. Does that not suggest I could have done something more to win? Perhaps she could have done something more to inspire me? Perhaps my doctors could have worked harder to find ways to keep fighting? Unintentionally, the metaphor places blame on those who do not recover the way loved ones would hope and gives too much credit to those who are able to recover.

So what language could we use to replace this metaphor? First, we must begin by exploring the intention behind these words. When someone says to a patient "Don't give up!" what are they saying? Are they intending to say that if this person dies they will forever consider them a quitter? No, of course not. So what does someone mean when they say "Don't give up!"

I believe the deeper translation to this phrase is something along the lines of "please don't go!" or "I don't know what I would do without you!" They are imploring the patient to "fight" so that they do not have to suffer the loss. Other possible translations to similar battle metaphors might be:

"I'm scared!"

"I don't know how to handle this!"

"I don't know what to say!"

"I can't believe that you are so sick! I can't even believe this is happening!"

"I want you with me as long as possible!"

In addition, our culture caries many unspoken myths about the power of "letting go." If someone were to drop the battle metaphor and say something more authentic like "I want you here with me desperately because I love you so much but I know that may not be under your control. I will understand if the time comes for you to let go," our culture would likely judge and reject this sentiment. (That is, unless it is in the case of a person in hospice care and is surely days or hours from death. It is only at this time that we feel comfortable telling those we love that "it's ok to let go.") Just as we believe the power of positive thinking can alter a physical state, we fear that offering surrender will encourage and speed up a person's death. For this reason, we are trained to keep such "negative" thoughts to ourselves.

Crazy things do happen. People recover from things, sometimes to the great astonishment of their healthcare professionals and loved ones. At the same time, this can not be, and is not, the case for everyone. Can we find language that does not carry with it so much unintentional blame/praise? Is it realistic to think people might be interested in learning more helpful ways to offer support? Is it justified that patients may wish for a different kind of encouragement or should we just be happy someone showed up at all?

Let me be clear: I am not trying to be critical of people who use The Battle Metaphor. In this culture, to have someone willing to offer support in any way, shape, or form is a huge gift. I have not written this to accuse anyone of doing something "wrong." I have written this in an effort to look at our common language under a microscope and ask if we have a better alternative. I would rather you use The Battle Metaphor than say nothing at all.

That said, it is my opinion that a more effective alternative to The Battle Metaphor is to use "I" statements instead of "You" statements. So, as an example, instead of saying "You can't let this illness beat you" you could say "I want you to recover from this illness so badly!" This is likely a more authentic approach and does not "ask" the patient to "do" anything. Some other examples of replacement I statements might be:

"I am here for you."

"I am thinking of you constantly."

"I miss you."

"I am so sad that you are sick. I wish I could fix it."

"I want the best for you."

This is a touchy subject. Some people don't want to be "censored" or made to feel like they can say something wrong. I don't blame them and this is not my intent. During times of illness, people can feel lost and confused about how to react, what to say, and how to offer support. It's my belief that this does not have to be a mystery. There are generalities that can be made when communicating about illness and grief. Just as those in the grief world advise people to avoid phrases like "He's in a better place now" or "It's for the best," patients can offer their perspective on the most helpful ways to be supportive in times of sickness and end of life.

Let's not question the intentions. Let's assume love is the motivation behind any of these interactions, Battle Metaphor or otherwise. We need not question the heart of the person speaking but we can seek to understand each other more. As we pull back the curtain, we can learn from each other and make our communications even more meaningful.

Yes, Your Voice Matters

Getting Going:

The first challenge to "getting going" as a political advocate is simple to identify. Even in thinking about political advocacy, the question "Where do I start?" can be enough to discourage a person from going any further. The good news is there is an easy answer to that big question.

Start anywhere.

First, get clear about what general or specific areas you are most interested in. For the purposes of this blog, we will assume health advocacy is at the top of the list. From there, your interests may become more specific and include topics like Medicare reform, Organ Donation policy, or research dollars for a specific illness. Whatever your area of concern, don't worry if you have no idea who to talk to about it. Just start anywhere.

1. If you don't already know, learn who represents you. Each state has their own website listing members of the general assembly and what areas of the state they represent. In the internet age, we have a great advantage to "starting anywhere." To find your state's website you can google "(Your) State Legislative Website Directory" or "(Your) State General Assembly)."

You can also start by visiting www.ncsl.org (National Conference of State Legislatures). There you will follow the "Resources and Directories" menu, follow the link to "State Legislative Websites" and click the page's link to this directory.

Once you find your way to your state's general assembly website, the formats may vary slightly state to state. Look for menus related to "Representation" and follow them to specific fields asking for your district, zip code or county. The websites will provide you with the names and contact information for House and Senate members meeting your criteria.

2. Contact your representative by dropping by, making an appointment for a face-to-face, calling or emailing. Speak to them or to their assistant. *Rest assured, Legislative Assistants are the gatekeepers to people and information. They can help you!*

3. Don't worry if the first person you contact is not interested in or involved in your particular area of concern. Remember the rule is Start Anywhere. When you reach the representative or, more likely, their assistant, tell them briefly about what areas of politics you hope/plan to become involved in or learn more about. Follow this short introduction with the question "Can you direct me to someone who is currently working on the issues I care about?" If they don't know, they will likely know someone who knows. It may be a phone tree, but you will get to the right person eventually.

Does My Visit/Call/Email Really Matter?

The short answer is : Yes! by law all visits, calls, and emails must be logged. Your input is counted.

The longer answer is : It Depends!

There are ways to more or less effective when reaching out to representatives. It is said:

1 face-to-face is worth 10 phone calls

1 phone call is worth 100 emails

It takes 7 contacts by a constituent before they become recognizable

The more personal you can make it, the more effective your advocacy will be. Get to know your representatives and let them get to know you. For maximum effectiveness, they need to know you by name.

The average state representative is considered to be part-time and makes very little income. At fist glance this may seem noble but, in practice, it dramatically narrows the demographic of individuals capable of taking on such a position. For most people working for under $15,000 a year (the salary quoted in May of 2010) with a wildly unpredictable schedule is simply not an option. This unusual circumstance primarily leaves room for individuals who are retired or independently wealthy to take on the role of house or senate representative.

These individuals often come from a background of privilege and many have lived within the world of politics since birth. While this demographic certainly warrants respect, it also warrants caution. For a person of color or a person living with chronic illness, it is fair to wonder if this demographic is equipped to speak on behalf of a world they likely do not know intimately. When you ask "Who represents me?" the answer is: You and people who have walked a similar road. We can not depend on those in office to comprehend the nuances of our experience. Our stories must be told. Our stories can influence political views. Our stories matter.

The bottom line, my friends, is we have a voice in the political arena. Once we are armed with all of the information we need and prepare ourselves to be effective in the political arenas, there is no reason why we can't be a part of the change! Political advocacy is waiting for you, if you so choose. We need your voice.

Calling All Healthcare Professional Bloggers!

I am writing a new book and am looking for stories told from all perspectives of the healthcare system.

I am looking for stories from healthcare professionals about a time when the healthcare system protocols provided a barrier for you to perform the best patient care. I want to know how it made you feel as a professional.

More generally, I am looking for any professional's account of the emotional experience of caring for sick and dying. As examples, I want to learn more about how you cope, what ticks you off and how you grieve.

I'm not looking for new pieces necessarily, I am hoping you will let me publish something from your blog alongside your blog address.

Please spread the word to the healthcare professional bloggers you know. Thanks!!

Pulling Back the Ropes: Humanizing Government

The first day I shadowed Jack, a North Carolina lobbyist, the itemized budget for the next year had just been released that very morning. This would inform the rest of our day.

Jack handed a copy to myself and my sidekick, an intern in his association. It was long, heavy, and looked like Greek to me. This wasn't surprising, however. I knew nothing about this governmental system of ours. I never paid attention in elementary school when we learned about "how a bill becomes a law" and, as an adult, it appeared far too complicated and corrupt for me to care. It seemed to me that my voice could never be heard over the loud chaos of our governmental machine.

This day, with Jack and his intern, I was in the belly of the beast. It was a crash course in how similar politics are to high school and how effective one citizen could actually be. As we crossed the grounds of the State Legislative Building and the nearby legislative office building for the first time that day, my eyes were confused.

There was what I expected; many older, Caucasian men in suits who looked important or, at least, like they had important places to go. I recognized one president of a major hospital and was told he was being accompanied by "his lobbyist." While there were many of the characters I expected to find, there were also large groups that stood out. The three most distinctive were the large clusters of Harley guys decked out in full motorcycle gear, the Arts Council group respectfully linked by a large yellow button stuck to their shirts, and the women in Dr. Seuss clothes beside those with children's books taped to their heads.

At first, these sights were disorienting enough that I assumed these people were part of a play downtown, got lost and ended up in the wrong place. Of course, this was not true. It was my first taste of what Jack called "the theater" of government.

For the rest of the day, I would have the pleasure of meeting and talking to some of these characters. All of them were there to address a particular line item or two in the newly released budget. These were community lobbyists who had a mission and sought out the appropriate representatives to plead their case. Some groups were highly organized, with full color flyers, statistics, and appointments with many representatives throughout the day. Others relied on existing relationships with certain politicians and were happy to wait around all day to get a few minutes of face time. Some relied mostly on the costume to get them in the door.

Two things became clear to me on this day:

1. We, the people, do have a voice. We just have to learn how, where, and when to use it. (That's what I hope my book will help you do!)

2. For every line item on the budget, there will be individuals, groups and lobbyists with a convincing argument for why that money should be appropriated differently, not cut, or increased.

The state budget I saw had numbers so long I got dizzy. With nearly twenty billion dollars on the table, it would seem like there should be plenty to go around. Hardly. For every program that is trimmed, there are real people effected and fighting to maintain their jobs and the stability of their lives. For every argument for or against a budget line item, there are compelling personal stories, ethical considerations, and financial implications. The bottom line is, there is no easy answer. Ever.

The theme of many of my talks and approaches to healthcare revolves around this concept of "pulling back the curtain." This calls for humanizing the experience in order to understand the true complexities of human emotion and systematic limitations involved. If we want to move forward, we can not remain still, standing in one spot waiting for others to fix the problems to meet our particular satisfaction. We must be willing to levitate and look down at the entire picture from all angles. The purpose of this, of course, is to find ways to identify the flaws and capitalize on the opportunities while working together, as human beings who happen to be patients/family members/professionals, for the best experience possible.

What I was shocked to discover on the grounds of the legislative building is that this goal of "pulling back the curtain" is not at all different for politics. The flaws in our governmental systems are not hard to see. Corruption, self-interest, and the business of political "scratch my back now and I'll scratch yours later," is as obvious as the nose on your face. What also becomes obvious, however, is the genuine grey area of so many of the issues at hand.

One small example of a grey issue I saw that day was a bill trying to be passed that said a person had the right to use deadly force if a threatening stranger was on their property. This seems logical, we all should have the right to feel safe in our home. What this bill did not include or foresee was the risk it posed to some "strangers" who also have the right to be safe. Social workers and child psychologists, for example, are sometimes mandated to visit a home unannounced as a part of child abuse investigations. If a home owner perceives this professional may take their child from the home, they then pose a "threat." Does this give them the right to use deadly force on this professional? One would hope the state would say "no" but at the time of my visit, they had not recognized this as a problem with the bill.

For those who choose to become politically involved, frustration awaits. It is a messy process. However, a part of that mess is the need for, and lack of, first person accounts. The patient voice is needed. No, it is required. First, we have to understand the system and where our voices can be heard. Once we have done that, nothing should hold us back from telling our story. Our stories MUST be told. Let's pull back the big red ropes and walk into our own government buildings ready to be an essential part of the process. Let's make a difference when and where we can. Let's humanize government, shall we?

Time Out for a Longer Look at the "Battle" Metaphor

After the unexpected death of a friend of mine, my sister made the comment that I have known more people who have died than anyone, especially young people. That's an unfortunate side-effect of becoming a part of "the community." When you have the privilege of meeting so many amazing people living with chronic and serious illness, either online or in real life, you may have to find ways to say goodbye to them. Or, one day, they will say goodbye to you. It hurts and sometimes it feels like there is too much loss to bear. Even so, I wouldn't consider taking a step back from "my people" because these friendships are valuable, not to be outshone by the difficulty of death.

This morning I was reflecting on the language we use when talking to someone with illness or talking about them after they have died. One primary metaphor permeates: The Battle Metaphor. We provide encouragement to those we love with phrases like "You're strong, I know you can beat this" and "Keep on fighting, you have come too far to let (insert medical complication here) take you." Likewise, we use similar terminology after death by saying things like, "She lost her battle with..." or "she fought a good fight."

When I think back on my days on the ventilator or my days living with end stage chronic rejection, I try to imagine how I might "fight" in those circumstances. Nothing comes to mind. It is a one foot in front of the other place to be. The "fight" is literally in "being." There is no effort beyond that. I don't know how I could have changed what I was doing to honor a wish to fight. Nor do I think, had I found myself in a place where I was too tired/sick to continue, there would be anything wrong in "surrender," yet another battle metaphor and one that implies defeat.

A few days ago, I was talking to my chiropractor who I have known since before my first transplant (10 years ago). He was marveling at how long it had been since my second (6 years) and asking me if I attributed the better outcome of the second set to anything in particular. My answer was medical in nature: "I don't know but I would guess it has something to do with a better chromosomal match and perhaps the fact that I had a Nissen to prevent reflux. They have linked reflux and chronic rejection now." He looked a little disappointed. "But do you think it has anything to do with your attitude?" he said, "It could be your positive attitude."

I struggled to not sound upset. "I have known too many people who had better attitudes than me, worked harder than me, and wanted to live as much as me, and they are gone. I can't take any of the credit." He was quiet and my mind kept turning. "But," I realized, "While I don't think a positive attitude can reverse an inevitable, physical decline, I do think a negative attitude can accelerate, possibly even begin, a physical decline." Is that possible? Can the results of a person's attitude go one way and not the other?

The battle metaphor bothers me. It always has. It suggests a level of control over my physical body that I simply don't have. It suggests a failure on my part when I am not able to "fight hard enough" to reverse a disease, a complication, my own death. It suggests triumph for "survivors," people who have won the battle. I am not a survivor because that, in context, makes my some of my friends losers. When I imagine someone telling my mother I lost my battle with (insert my cause of death here) I shudder. Does that not suggest I could have done something more to win? Perhaps she could have done something more to inspire me? Perhaps my doctors could have worked harder to find ways to keep fighting? Unintentionally, the metaphor places blame on those who do not recover the way loved ones would hope and gives too much credit to those who are able to recover.

So what language could we use to replace this metaphor? First, we must begin by exploring the intention behind these words. When someone says to a patient "Don't give up!" what are they saying? Are they intending to say that if this person dies they will forever consider them a quitter? No, of course not. So what does someone mean when they say "Don't give up!"

I believe the deeper translation to this phrase is something along the lines of "please don't go!" or "I don't know what I would do without you!" They are imploring the patient to "fight" so that they do not have to suffer the loss. Other possible translations to similar battle metaphors might be:

"I'm scared!"

"I don't know how to handle this!"

"I don't know what to say!"

"I can't believe that you are so sick! I can't even believe this is happening!"

"I want you with me as long as possible!"

In addition, our culture caries many unspoken myths about the power of "letting go." If someone were to drop the battle metaphor and say something more authentic like "I want you here with me desperately because I love you so much but I know that may not be under your control. I will understand if the time comes for you to let go," our culture would likely judge and reject this sentiment. (That is, unless it is in the case of a person in hospice care and is surely days or hours from death. It is only at this time that we feel comfortable telling those we love that "it's ok to let go.") Just as we believe the power of positive thinking can alter a physical state, we fear that offering surrender will encourage and speed up a person's death. For this reason, we are trained to keep such "negative" thoughts to ourselves.

Crazy things do happen. People recover from things to the great astonishment of their healthcare professionals and loved ones. At the same time, this can not be, and is not, the case for everyone. Can we find language that does not carry with it so much unintentional blame/praise? Can we find a new metaphor?

I have some thoughts but none worthy of proposing publicly yet. I will keep thinking but in the meantime, would love to hear your thoughts!