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Speaker shares what she learned about partnership, teamwork and communication as mother of patient

May 29, 2019
Caroline Delongchamps with her son and Dr. David Cole
Caroline DeLongchamps, middle, with her son Sam, who survived significant trauma as a toddler, and MUSC President Dr. David Cole. Photo by Anne Thompson

Editor's note: The following is the text of the commencement speech delivered May 18 by Caroline DeLongchamps, manager of Patient- and Family-Centered Care, Quality and Safety, MUSC Health. 

I am Bed 10.

I am Bed 10. Bed 10’s mom or just simply mom. These are a few of the ways I was first identified when my son became a patient here at MUSC.

I was waiting outside in the front yard with my 2-year-old, Charlie, and 11-month-old, Sam. My 8-year-old son Jack was about to arrive on the school bus. Every afternoon around 3 p.m. was a bit like a party as the neighborhood moms gathered to greet their elementary school children home from school. Sam had been playing in one of those little plastic mini vans that normally kept him entertained forever. The bus arrived, we all played for a while, and then I went to get the mail and round everyone up to go inside to do homework and prepare dinner. I did not realize that a friend had pulled into the driveway, and Sam had escaped from his little plastic mini-van.

When I looked up, his head was under the front tire of an SUV. The driver didn’t know if she should move forward or back so as she got out to see where he was, I tried to pull him out from under the tire. When that didn’t work, I moved to the front of the vehicle and tried to lift it off of him. You’ve heard about people who have the strength of a locomotive when they get that adrenaline rush – I couldn’t understand why that didn’t happen for me.

The logical thing to do would have been to call an ambulance, but that never occurred to me. I scooped him up and got in the backseat and we drove off, leaving Jack and Charlie in the front yard. I believe there were still several adults in my yard. However, my 8-year-old Jack wrapped his younger brother in the crook of his arm and took him inside. He took the phone into Sam’s room and called 911.

I looked down at Sam a few times. It was a gruesome sight. There was blood everywhere – his head, coming out of his nose and mouth. I knew he was dying in my arms.

We raced to the nearest emergency room, a small facility just down the street from my home, where they could do nothing for him.

They never took him out of my arms – all they could do was administer oxygen, call for an ambulance and wait for my husband to arrive.

Once we arrived at the pediatric ED here at MUSC, the tempo changed. They were obviously ready for us, and he was triaged and intubated. There were so many people on him immediately. They were working quickly and asking me questions, but they never once asked me to step out. There were police officers there, and I thought they were there to take me away.

I remember seeing tears from several of the doctors and nurses as they moved Sam upstairs to the pediatric ICU. My hospital experience at this point was limited to three normal pregnancies and deliveries, but I was pretty sure that it was not typical for clinicians to cry in the presence of a patient or family member. I knew we were in big trouble.

It was obvious from looking at him that his injuries were critical. In fact, we had a family conference shortly after our arrival, with about 50 white coats who were all staring at me. They told us to hope for the best but to plan for the worst. We were literally minute by minute. It was not likely he would survive.

Sam presented with skull, orbital and facial fractures, too many to count, and bifrontal contusions with intracranial hemorrhage. Originally, they also thought his right optic nerve was damaged.

When he was transferred upstairs to the pediatric ICU, we were asked to stay in the waiting room, which was agonizing because I had been with him from the moment I picked him up off the driveway. They kept us out because the neurosurgeon was placing an external ventricular drain, which pulls the blood off the brain to help alleviate swelling. They asked us to stay in the waiting room because it would be too difficult to watch them drill a hole in Sam’s skull.

Trying to sit still was impossible, and we certainly did not go to the waiting room. We waited in the middle of the hallway, right outside the doors of that ICU.

I kept seeing the car on his head and felt the motion of trying to free him from the tire. Tapes of the accident played over and over in my brain. I could have been standing in front of you and could hear and see that you were talking, but I was unable to process the words. I was scared because I knew I was about to hear very important information about Sam’s life, but I literally could not hear the words.

Sure enough, a nurse came out, greeted us and brought us through the back doors of the ICU. She left us standing 3 feet from the foot of Bed 10.

I did not like what I saw lying in Bed 10, so I began scanning the room. It’s an open bay unit – I was trying to find a baby that looked more like Sam. His appearance had already changed dramatically. My husband pointed to his toes and said, “Look, these are Sam’s toes. We know this is Sam.”

The bedside nurse Lisa picked up on what was happening, and she met me at the foot of the bed, and she took my hand and tucked it up under her arm and gave me a fist pump. To me, it felt as if she was saying, “I got you. And if you even think about going down. I got you.” Then she did something remarkable. She walked me to the head of Bed 10, and she said, “I need you to talk to him. Right now. He needs to hear your voice not mine; I’m only a stranger.”

Then she continued, “This blue tube is a ventilator, and it’s allowing his major organs to rest while we do the hard work for him. This tube that is coming out of the top of his head is a ventriculostomy, and it is pulling the blood off of his brain as fast as we can to help alleviate what will certainly be significant brain damage.”

As she was taking care of a critically ill, dying patient with one hand, she was both literally and figuratively holding me up with the other.

Lisa is one of the most powerful humans I have met. She was powerful to me in that moment but she also empowered me. She empowered me to be involved in Sam’s care by sharing information in the most compassionate way, under the most stressful circumstances I could imagine. If you had surveyed me after that experience, I would have told you Lisa had probably done that a thousand times. What I learned later is that she had never seen anything like this before, and she had a baby at home the exact same age. She was terrified. Do you think she learned that in nursing school?

I didn’t know it at the time, but that nurse was partnering with me. She recognized my value as a mother at the head of the bed. I can tell you with great certainty that my fear and vulnerability would have kept me at the foot of the bed. Instead, she chose to include me and ensure that I was a part of Sam’s health care team.

Including me at the bedside illustrated many of the core concepts of patient- and family-centered care. This is the approach to health care that is grounded in mutually beneficial partnerships. It is based on the understanding that family plays a vital role in the health and well-being of patients of all ages. The core concepts of PFCC are respect, dignity, participation, information sharing and collaboration.

"Including me at the bedside illustrated many of the core concepts of patient- and family-centered care. This is the approach to health care that is grounded in mutually beneficial partnerships. It is based on the understanding that family plays a vital role in the health and well-being of patients of all ages. The core concepts of PFCC are respect, dignity, participation, information sharing and collaboration."

Once Lisa established that partnership, my husband and I became members of the team. We participated in rounds. I was always present during nursing shift report, and we were involved in every decision that was made regarding Sam’s care. While all this was happening, we watched and waited. We watched the ICP’s climb and digress. We watched the swelling increase and move down his face, not knowing what damage was actually occurring in his brain. And, we watched the team of R.N.s, RTs, intensivists, neurosurgeons, maxillofacial surgeons, ophthalmologists, plastics, pharmacists, PTs, OTs, residents and students all come to Sam’s bedside to work, to learn and to study, but ultimately, to try to keep him here with us – minute by minute and then hour by hour.

These people were a part of Sam’s team. A team functions well when its members communicate with one another and listen to the concerns and opinions of everyone.

You might wonder what was happening with the rest of my team. Life had to go on while I was at the bedside with Sam. Jack’s first grade teacher took our two dogs. My best friend took Jack and Charlie, and my husband would go home at night to be with the boys to provide some sense of normalcy.

All of this was done for us without me having to orchestrate it. This was done so I could be there for Sam and be a functioning member of the health care team.

Dr. Don Berwick, former leader of CMS, said, “Health care is an exercise in interdependency not in personal heroism. You simply cannot do the right job alone.”

Teamwork is generosity and deference to others. Look around you right now, these are your future colleagues. You need each other, but you also need your patients and their families.

Navigating my way through the system was another challenge. Understanding the culture of the hospital, the hierarchy of clinicians and the medical terminology was frustrating. I was lucky enough to have a friend – a resident – who worked at MUSC. She was with me every day and explained how the process works. She also empowered me by letting me know that I had choices. So far, all the docs were telling me what was going to happen next. My friend explained things differently. She repeated information that had already been given to me that I had forgotten or didn’t understand. She translated medical information to me on an hourly or daily basis, and she did it calmly and respectfully. I was embarrassed when I would ask something that had already been explained to me, and she told me that it usually takes three times for those of us who are nonclinical to hear info before it is processed.

This was important to me because although it seems strange, I cared what you thought about me. I assumed everyone already thought I was a terrible mother, and I didn’t want you to think I was ignorant as well.

She encouraged me to ask questions, take notes, keep a journal and track Sam’s progress. After all, I had no control over what was happening to the patient in Bed 10, but I could control my pen hitting the paper by documenting his setbacks and progress.

"Most families do not have a 'friend' that just happens to work in the hospital where their loved one is receiving care. Most families do not have the benefit of a medical translator available to them whenever they have a question. Can you imagine the stress?"

Keep in mind, most families do not have a “friend” that just happens to work in the hospital where their loved one is receiving care. Most families do not have the benefit of a medical translator available to them whenever they have a question. Can you imagine the stress?

You are about to find out what it is like to work endless hours, taking care of patients all day and night. But imagine being at the bedside of the same patient hour after hour, day after day. Imagine watching the monitor that is measuring the intracranial pressure in your son’s brain: watching it climb to a disturbing number and then praying for it to fall back down. Waiting. Watching. Waiting.

Dr. Rana Awdish in her book, “In Shock” said, “Turning together to face what our patients face-is what allows us to not only bear witness, guide our patients, and treat disease, but also to bring more compassion to each moment, a compassion that extends even to ourselves.”

One week after the accident, Sam was stable enough to go to the OR. The neurosurgeon, oral surgeon, and plastic surgeon were all scheduled to be there. Our family members arrived from Florida, West Virginia, Texas and Colorado.

I have only one example from our experience that demonstrates a lack of communication that resulted in an event that caused harm. This happened the morning of Sam’s surgery when a physician who was not a part of our team came to the bedside to dilate his eyes for a research study.

That physician failing to listen to a member of Sam’s team and my husband resulted in a canceled surgery – a canceled surgery after weeks of anticipation and preparation with three surgeons, and their teams, who had been working long hours to prep for his case.

Luckily, my friend – the resident – explained to me that this was not typical of how things are done here. Most importantly, Sam was not physically harmed by this event. It was however, a painful, emotional crisis that could have been avoided if one doctor had listened to another doc and a parent, without putting his own agenda first.

We talk about perceptions a lot, and one thing I have heard from our care team members is that sometimes the patient/family perception is just wrong. I would agree, to an extent, now that I work in health care. However, if their perception is off … why?

My perception of that day was that my “gatekeepers,” Sam’s primary nurse and the two intensivists that had kept him alive up to that point, had all gone off service. If one of them had been at the bedside that morning, they would not have allowed the other physician near Sam’s bed. That may have had nothing to do with what actually happened, but without an explanation from the team, patients and families are often left to their own imaginations.

Sam was able to go to the OR the following day, and my resident friend gave us updates throughout the procedure so that we would know he was OK. Dr. Kline put his nose back. Dr. Bach went through the palette to repair his cheekbone and mandible fractures. And Dr. Tuitte, as he explained it, superglued the fractures over Sam’s eye to prevent a CSF leak. After what felt like an eternity, my resident friend came out and told us that we had our beautiful little boy back!

Bev Johnson and Liz Crocker, international leaders in patient- and family-centered care, said it best in their book “Privileged Presence,” “When people are dealing with illness or injury, their own or a loved ones, all of their senses are intensified. Health care experiences are defining moments in people’s lives; they are filled with poignancy and power and often remembered for a very long time.”

Our experience with Sam in the PICU was the greatest privilege of my life, which was to be in the presence of incredibly skilled and talented clinicians. Sitting at the bedside, I listened to the ventilator breathe life into my 11-month-old son. I watched the ICP’s climb to alarming heights. I watched the hands of those who dressed his wounds, performed miraculous operations, adjusted vent settings, prescribed medication and worked tirelessly to figure out complicated solutions to the problems his tiny body and brain were facing as a result of his trauma. I tell Sam’s story often, for the purpose of teaching. Teaching health care professionals the importance of partnering with patients and families.

That experience has led me to the second greatest privilege of my life, which has been working with you. I never imagined I would be afforded the opportunity to work alongside the hands and brains that drew me here in the first place. Or, that I could work in a place where so many talented people would share their knowledge with me. MUSC has become my family in more ways than one.

Now we are teaching PFCC in your classrooms, and we are giving our patients and families their own legacy of learning. This is my third greatest privilege – working with our patients and families. When the president of the IPFCC learned that we created an interprofessional course to teach PFCC, she said, “I don’t know any other academic medical centers that are doing this yet.”

I hope you are proud of your alma mater!

Crowd shot of commencement speech 
Graduates and their guests listen to Caroline DeLongchamps' commencement speech. Photo by Cindy Abole

As new health care providers, you may not always feel powerful or privileged. I doubt Sam’s nurse felt powerful the day she admitted him and walked me to the head of the bed.

You probably won’t feel powerful when you are dealing with angry, frightened patients and families who you will often meet when they are not at their best.

However, your knowledge, your education and everything that you learned on this campus is going to give you access and rights to hear from a terrified mother. A terrified mom who is too afraid to tell anyone else her terrible story and knows that if her son dies, it will be because of her own negligence. It gives you the ability to make choices that can cause great harm or great good.

Whatever your role in the lives of our patients and families, you now have the ability to imprint on people who are dealing with illness or injury – their own or a loved one’s. All their senses are intensified, and they will remember you in very vivid detail. Imagine the privileged presence you will feel. You have just become a part of someone’s story.

This trauma was an unwelcome interruption in my life story.

But because of the miraculous care we received at MUSC, we were able to walk out of the hospital with Sam in my arms.

We walked out of the hospital that day with more than just the gift of Sam being healed. We were forever changed by this trauma, but thankfully, we were held and nurtured by a staff of countless many who embraced our family and included us in the overwhelming task of keeping Sam alive. Every day. For 19 days.

So what? Who cares?

Sam’s story, and my ability to tell it, are not the reasons I was invited to stand at this podium today. If that were the case, we would have lines of people up here to tell you their miraculous stories. MUSC has made a commitment to patients and their families and to patient- and family-centered care. It lives in one of our core documents – our strategic health plan. Another reason to be proud of your alma mater.

This story is about a pediatric case, but please keep in mind – the concepts of PFCC apply in all health care settings from inpatient to outpatient and from pediatrics to geriatrics. I want it to mean more to you than a great story with a happy ending. Whether you stay here or practice somewhere else, I am asking you to work toward a culture shift in health care.

"Whether you stay here or practice somewhere else,

I am asking you to work toward a culture shift in health care." 

 

Partnership, teamwork and communication

Partnership, teamwork and communication were important to me when my son was a patient, and now I am spending my career teaching them to you and other providers. These three things will elevate your practice, and if you do them well – they will set you apart from others in your field:

• Like the physician who FaceTimes a parent during rounds to discuss the plan of care.
• Like the nurse who stays after rounds to talk with the angry fiance to figure out why she doesn’t want the patient to go to rehab.
• Like the doctor who agreed to meet with a patient who was misdiagnosed to listen to her concerns.
• Like the medical director who changed his mind about the design of an ICU based on a family’s experience and the mothers ability to share her story.
• Like the pharmacist who works with patients and families to deliver prescriptions to the patient’s room prior to discharge.
• Like the chief operating officer who invited a volunteer patient advisor to interview candidates for a new leadership position.
• Like the doc who partnered with the family who lost a loved one due to medical error in order to prevent such an error from happening again.
• Like the resident, in the middle of the night, who asks the mother at the patient’s bedside, “How are YOU doing?”

It has been my privilege to witness all of these examples. I can tell you that none of them took a great deal of time, but they are critical for the quality of care you will provide.

Some of you will go into research to discover new treatments or grant writing that will propel a study further in its journey. However, many of you will be taking care of patients or collaborating with those who do, and your success will be measured by your interactions with your patients and families.

This will be your source of personal and professional accomplishment.

In closing – thank you!

Thank you to the MUSC Board of Trustees, President Cole and Dr. Saladin for this extraordinary honor. Speaking of extraordinary, I would like to thank my boss, Dr. Danielle Scheurer, our chief quality officer, who made it possible for me to do this work. Thank you to Lisa Kerr and Kelly Loyd, my commencement practice team. Most of all, thank you to my family who are all here today. The moment I figured out what I wanted to be when I grew up, they were all in. They have showered me with praise and encouragement, and I am eternally grateful.

Congratulations to the class of 2019 – and to your families. As a parent, I cannot imagine the sense of pride you must feel sending new health care professionals out into the world! No one got here today without help from someone, so graduates, please remember to thank the folks sitting in the chairs behind you or someone who made an impact on your life and career choices.

I am not a physician or a pharmacist. I am not a nurse or a dentist. I am not a PA, physical therapist or MHA graduate. I have not cured a rare disease, invented life-saving technology, and big surprise – I’m not even a rock star. In fact, I don’t have an esteemed health care degree like all of you will very shortly. I did not choose health care. Health care chose me.

Now my story includes today. This is a great day for patient- and family-centered care.

As you go out into the world and begin your careers remember – we need you. But if you want to be good, I mean really good. Not just technically skilled, but a well-rounded, thoughtful and competent physician, nurse, pharmacist, dentist, therapist, administrator, informaticist or researcher … never forget that you need them. You need them not just as a source of revenue.

You need to listen to what is important to them to reach a common goal. You don’t have to be a hero every day – you just have to be human.

Upon his retirement, after 40 years as a pediatric intensivist, Dr. Fred Tecklenburg said, “I learned more about love, faith, forgiveness and healing from the patients and families in the ICU than I could in any church or temple.”

I hope, like Dr. T, that YOU never stop learning.

I am here today because of a privileged presence.

Let me introduce myself again… I was in Bed 10 with Sam in the pediatric ICU in the building on your left.

My name is Caroline.

Editor's note: As DeLongchamps concluded her speech, a 14-year-old boy walked up to the podium. "I am Sam," he said, standing beside his mother.