Little Patient in a Big Medical World

It was one of my first opportunities to talk to healthcare professionals. It was Medical Grand Rounds at a major hospital. I had been invited with a chaplain friend via an official letter. We had to submit our CV for approval. (First, I had to look up "CV" on google because I didn't know what that was.) This was a big deal and I felt important, nervous, intimidated.

I prepared my remarks for the upcoming talk carefully. I was ready to talk about life as a patient and the importance of my relationship with my healthcare providers. I was ready to talk about grief and coming to the end of life. I was confident in my content.

My chaplain friend, Heidi, and I had been invited to a Residents' Lunch prior to the Grand Rounds. This is where we would meet face to face with the resident who had invited us to speak. We would also have an hour to chat with the internal medicine residents about whatever was on their minds.

When we sat at the head of the table, there were about 15 pairs of eyes on us. The Chief Resident, the man who invited us there, stood for introductions. He began with Heidi. Her introduction was long, detailed, and glowing. He went all the way back to her high school and undergraduate days, detailing her degrees and hobbies. He gave a lengthy description of her work within the hospital and what value she lends. It was an impressive and generous introduction, clearly showing he had done his "homework."

When it came time for my introduction, he gestured at me and said "And this is Tiffany Christensen." With that, he sat down. I was stunned and a bit stung. He had my CV information and he knew my patient background. This was not a case of not knowing, it was a case of not caring. I felt like a lump of meat.

Through the rest of the lunch, all questions were directed at Heidi. I did my best to put on a smile, shrug off what had just transpired, and participate in the conversation. Each time I chimed in, however, my comments were met with dead air or another remark directed at Heidi.

When it was time to present at Grand Rounds, it was difficult to keep my head up when I walked into the auditorium. My competitive spirit is all that kept me going. I had an even stronger drive to show professionals the value of the patient voice.

When Heidi and I finished our presentations, all of the comments and questions were directed at me. One older physician remarked that he usually fell asleep during grand rounds and this was the first one in a long time that kept him on the edge of his seat. I was later met with many wonderful comments in private. Grand Rounds had been a success. I had weathered the storm of one professional's bias and proven to myself that my voice, my experience, did have some relevance to practicing professionals.

Today, I make my living speaking to consumers and professionals about various aspects of healthcare. Every time I stand before a group of healthcare professionals, I am met with the same insecurities I felt that day at Grand Rounds. My lack of medical training, my lack of a degree of any kind, comes up on a fairly regular basis. I dread the pre-presentation chats because invariably someone will ask my background and I am met with the same look in the eye as that chief resident. It can be a painful time before I make my presentation because my value is under scrutiny.

I am just a little patient in a big medical world. Trying to be heard. Trying to speak up for what I see on a personal and systematic level. I am just a little patient looking up at the towering healthcare system and hoping to make a dent. Each and every time I stand in front of a room of doctors, nurses and other healthcare providers, I wonder if I will win them over or fall flat on my face. Usually I win them over. Sometimes, I fall.

There are lots of us. Patients with rich insights stemming from arduous experiences. We have so much to say and so much to teach. There are still professionals who resist us. There are many who look for ways to integrate our messages into their practice. There is a new movement called Participatory Medicine. Some of us, patients and professionals, are ready to partner and meet each other as equals.

While I have to battle my nerves and insecurities in my work, professionals may face other challenges. I recently gave a presentation beside a physician currently leading the way in Participatory Medicine. An audience member asked what he would say to one of his colleagues who resisted the idea of partnering with patients. His response impressed me.

He said, "Every day I go to work, I have to battle my own ego. I know things would happen faster if we did them my way. I could plan my schedule if I didn't have to take other opinions into account. But I have made a choice to practice a different way. I have to remind myself that this is not about me, my schedule, my way. This is about the patient. So every day, I choose to put aside my ego and listen."

We are getting there. This healthcare culture is changing. Patients and professionals are working through their respected challenges and finding a way to the middle. I am so grateful to be a part of this exciting time in the evolution and revolution of healthcare!

Top 10 Things I've Learned after having Double Doubles

I leave today for Indianapolis to speak about lung transplant to cf social workers and registered dietitians. The diet part is easy -- TPN is yummy! (just kidding) :)

This is a handout I am using at the conference. Just thought I'd share....

April is Donation Awareness month! Are you a registered donor? Why not?

In the spirit of a beautiful woman, Eva:

Love to my donors and their families.

Love to my transplant buddies who have said goodbye way too soon.

Love to those who wait for life to begin anew with a donor heart, liver, lungs, kidney....

Love to those who have transplanted organs who still walk this journey of balance, strength and carpe diem.

Love to those professionals and family members that make the transplant journey an option and then, a reality.

Top 10 Things I've Learned after having Double Doubles

1. One of the most difficult circumstances for any human to bear is the unknown. Waiting for transplant is the ultimate unknown. Waiting can be the hardest part of the whole process.

2. The time waiting for transplant is probably the longest period in a person’s life when they are not “in the rat race.” The rat race will begin again after transplant, if the outcome is a good one. Many people hope and work towards having this level of “nothing to do”; they call it a sabbatical. If patients can think of the waiting as a sabbatical, they can give themselves permission to use the time for inner work, planning, and a favorite (or previously unexplored) leisure activities.

3. Transplant is a major event that is very mysterious until you go through it yourself. Because of all of the emotions that go with this process, being sick, and the surgery, it is normal to cling to every word of the people who have previously been transplanted. Listening to other patients may help avoid potholes but be one has to be careful: some patients might be potholes. Compare not. No two experiences of transplant will be the same. Even for those who have had the transplant twice, the experiences are completely different. Even having the same body/mind does not equal having a similar transplant journey!

4. This is a time when patients and families need the most support. Some people will be a surprise because they will step forward and some will be a surprise because they step back. Patients and families may feel like the ones who step back have abandoned them and let them down. More than likely, those people love the patient/family very much and are ill-equipped to handle watching someone they care for go through such a difficult time. It doesn’t feel like love, but it is.

5. Even for the most peaceful patients and family members, there will be hard days along the transplant road; pre and post. Sometimes, it can be difficult to share the deepest emotions with the people in the “inner circle.” Sometimes patients/families need someone slightly removed from the situation to speak with openly and honestly. Social workers and therapists can be an invaluable resource on this road.

6. Don’t forget that you are living today. Waiting for transplant often feels like life is in a holding pattern. In many ways, it is, but the mind, the spirit and, relationships continue to evolve and grow, even if the body becomes weaker. Remaining conscious of That Which is Important can increase quality of life.

7. Emotions are impermanent and can be influenced by your body’s struggle. For example, some people have moments when they feel like they would rather “give up.” This is normal for someone who is dealing with end stage illness and the feeling will more than likely pass. Patients must be allowed space to cry or feel blue while keeping in mind that infections, fatigue and shortness of breath can be physical triggers for an emotional reaction. Knowing this might take the edge off. It is important to try not to take these emotions too seriously right away. If a patient can’t get out of the funk, that’s not unusual and they can consider various ways to treat this—medicine, acupuncture, therapy etc…

8. The transplant experience can be complicated. Bumps are expected for at least the first year. There will be a learning curve about the new meds, symptoms etc. It seems overwhelming but it will eventually become as routine as brushing teeth. For the first year, patients should be careful not to make many definite plans until things have stabilized. The have to be reminded that any symptom, even if it seems minor, should be reported to the team. There are surprising nuances to post-transplant symptoms. All the while, it is important to focus on goals and remember “This too shall pass.”

9. There are no guarantees for anyone, before or after transplant. Some people choose to cope with this through hyper-vigilance with germ management. Some people live life in fear of chronic rejection or missing a dose of immun-suppressants. Some people focus on their perception of a solution ie. Exercise, meditation, “living a normal life” etc. There is nothing wrong with any of these things, however, the only thing we can do is live a life we love so that no matter what happens, we have no regrets.

10. I am not illness. There is a part of me that is never sick, never tired and never scared. Separating “me” from my body is very helpful in coping with illness. I can still enjoy life, no matter my physical state of being.

Can you relate?

I heard this song at a concert this weekend and it brought tears to my eyes. I sure remember days like the one in this song.

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

Trust

I believe in the timing of the universe.

I believe in the fog that keeps me from seeing the horizon.

I believe in the sun that makes me squint my eyes.

I believe in the distraction that hits me when I am attached to concentration.

I believe in the creativity that comes when I feel empty of ideas.

I believe in the interruption that stops me in the middle of great progress.

I believe in the progress that blinds me to what matters in life.

I believe in the open parking space in a sea of cars.

I believe in the unexpected traffic jam when I am in a hurry.

I believe in the serious illness that hits just when my life has begun.

I believe in the second, third and fourth chance when I knew time had run out.

I believe in the love that wanders up just when I thought I was alone.

I believe in the loss of the person I thought was my forever.

I believe in the search for myself that ends with appreciation for others.

I believe in the friend who I never knew I needed until the gales of laughter.

I believe in the life that began so small and turned into endless possibilities.

I believe in the death that will come just when I have played my part.


I trust. I trust that there is no "good" and there is no "bad." I trust all of it is a part of this learning we call living. I trust that my heartaches teach me more about the joys. I trust that my joys will lead me to greater risks, bigger losses. I trust in the timing of the universe. I know I may not understand, but I trust.

I trust in the tears that come with the losses. I trust in the anger that comes when life seem too cruel to bear. I trust in the joy I feel when things "go my way." To trust does not mean to not experience the consequences of the timing of the universe. I trust that my reactions too are all a part of the timing.

Trust is my connection to The Divine.

April is Donation Awareness Month!

April is Organ/Tissue Donation Awareness Month! Have you registered as a donor? Does your state have an online registry? Is the heart on your driver's license first person consent? Does your family know where you stand?

Organ/Tissue donation saves lives. Consider recycling yourself.

Over 100,000 people are waiting right now for transplants in the US.
18 people die every day waiting for organs that didn't come in time.

Will you think about it, educate yourself, and share your decisions?

Here are some important things to know, thanks to Carolina Donor Services for this info:



Myths and Misconceptions

The largest barrier to organ & tissue donation
» Uninformed public
» Misinformation
» Gossip/Urban Legends


Myth No. 1.
If I agree to donate my organs, my doctor or the emergency room staff won't work as hard to save my life. They'll remove my organs as soon as
possible to save somebody else.

Reality.
When you go to the hospital for treatment, doctors focus on saving your life — not somebody else's. You'll be seen by a doctor whose specialty most closely matches your particular emergency. The doctor in charge of your care
has nothing to do with transplantation.

Myth No. 2.
Maybe I won't really be dead when they sign my death certificate. It'll be too late for me if they've taken my organs for transplantation. I might have otherwise recovered.

Reality. Although it's a popular topic in the tabloids, in reality, people don't start to wiggle a toe after they're declared dead. In fact, people who have agreed to organ donation are given more tests to determine that they are truly dead than are those who haven't agreed to organ donation.

Myth No. 3.
Organ donation is against my religion.

Reality.
Organ donation is consistent with the beliefs of most religions. This includes Catholicism, Protestantism, Islam and most branches of Judaism. If you're unsure of or uncomfortable with your faith's position on donation, ask a
member of your clergy. Another option is to check the Carolina Donor Services web site www.carolinadonorservices.org which provides religious
views on organ donation and transplantation by denomination.


Myth No. 4.
I'm under age 18. I'm too young to make this decision.

Reality.
That's true, in a legal sense. But your parents can authorize this decision. You can express to your parents your wish to donate, and your parents can give their consent knowing that it's what you wanted. Children, too, are in need of
organ transplants, and they usually need organs smaller than those an adult can provide.

Myth No. 5.
I want my loved one to have an open-casket funeral. That can't happen if his or her organs or tissues have been donated.

Reality.
Organ and tissue donation doesn't interfere with having an open- casket funeral. The donor's body is clothed for burial, so there are no visible signs of organ or tissue donation.


Myth No. 6.
I'm too old to donate. Nobody would want my organs.

Reality.
There's no defined cutoff age for donating organs. Organs have been successfully transplanted from donors in their 70s and 80s. The decision to use your organs is based on strict medical criteria, not age. Don't disqualify yourself
prematurely. Let the doctors decide at your time of death whether your organs and tissues are suitable for transplantation.


Myth No. 7.
I'm not in the greatest health, and my eyesight is poor. Nobody would want my organs or tissues.

Reality.
Very few medical conditions automatically disqualify you from donating organs. The decision to use an organ is based on strict medical criteria. It may turn out that certain organs are not suitable for transplantation, but other organs
and tissues may be fine. Don't disqualify yourself prematurely. Only medical professionals at the time of your death can determine whether your organs are suitable for transplantation.


Myth No. 8.
Rich, famous and powerful people always seem to move to the front of the line when they need a donor organ. There's no way to ensure that my organs will go to those who've waited the longest or are the neediest.

Reality.
The rich and famous aren't given priority when it comes to allocating organs. It may seem that way because of the amount of publicity generated when celebrities receive a transplant, but they are treated no differently from anyone else. In fact, the United Network for Organ Sharing (UNOS), the organization responsible for maintaining the national organ transplant network, subjects all
celebrity transplants to an internal audit to make sure the organ allocation was appropriate.

Myth No. 9.
My family will be charged if I donate my organs.

Reality.
The organ donor's family is never charged for donating. The family is charged for the cost of all final efforts to save your life, and those costs are sometimes misinterpreted as costs related to organ donation. Costs for organ removal
go to the transplant recipient.