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