The pediatric intensive care unit (PICU) can be an intimidating and frightening place for parents and family members of critically ill children. Most parents experience a loss of control and feelings of utter helplessness. Many PICUs are working with family members to improve the quality of care provided through patient- and family-centered care, which is in fact 1 of the 6 tenets of the Institute of Medicine’s definition of quality health care. However, as highlighted by the tragic and very personal experience described by one family, PICUs can and should be doing more to improve the patient and family experience.
Key points
- •
Family time is important to the overall medical care of patients in the PICU.
- •
In addition to providing excellent medical care, it is also important for PICU teams to focus upon compassion and the patient’s unique life situation.
- •
Improved communication (between staff and with patients/families) is key in providing good patient- and family-centered care.
- •
Due to the intensity of the emotional experience for patients/families in a critical care setting, patients/families may need access to PICU staff for reassurance and clarification long after leaving the PICU.
- •
When a patient dies, it is important for PICU staff to learn from that patient and to take steps to make the learning long-term.
Editor’s note
I first had the pleasure of meeting the Merk family during Tony’s second admission to our PICU. Although I never really got to know Tony outside of the confines of our hospital, it was clear from multiple discussions with his family and some of his other health care providers that he was truly a special child. I was privileged to care for Tony and his family again during his final admission to our PICU. Unfortunately, we were not good enough to save Tony’s life. Even more disturbing for me, some of our words and actions made an incredibly difficult and sad time for his family even worse. Caring for critically ill children and their families is a unique and special privilege. We owe it to our patients to learn from each and every one of them so that we will be better for our next patient. Our PICU has come a long way over the past 10 years in becoming more patient- and family-centered, but as you will learn from Rick and Lynne Merk’s experience, we still have a long way to go. Tony has left our PICU staff with these lessons. I want to thank Rick and Lynne for sharing this very difficult and personal story with us, so that all of us may learn from their family’s experience.
The Beginning
“Intensive care unit.” Wow, those are scary words for parents to hear! Before our unwanted entry into the world of serious childhood illness in October, 2008, we viewed the intensive care unit as a place people went when their medical situation was desperate or where they were likely to die. Our first exposure to the pediatric intensive care unit (PICU) began when our then-3-year-old son, Tony, was treated there following intensive brain surgery, just 2 days after a brain tumor was discovered in the base of his skull. As we entered the PICU for the first time, we were greeted by the sweet sound of Tony crying down the hallway. We were told this was a good sign that Tony was waking up and alert. We could not wait to see him after dropping him off 10 long hours earlier for his surgery. Seeing our sweet boy with his head bandaged and all of those tubes, wires, and machines attached to him was scary. Honestly, it was an image we had never seen before. Television shows and movies do not show pictures of children who have just had brain surgery. Our biggest concern in that moment, however, was to reassure Tony that we were there and he was OK. Thankfully, he was able to communicate with us so we knew he was not in pain; he was just scared and uncomfortable. It was important that we, his parents, could take care of him in any way possible. There was so much we could not do for him and we felt helpless, but we appreciate the PICU staff letting us do what we could: touch him, kiss him, talk to him, give him a popsicle. We also appreciated them doing what they could to prevent pain and promote healing ( Fig. 1 ).
We came to understand that because of the seriousness of Tony’s surgery, he would need to be in the PICU for intensive observation. We quickly learned how parents place total trust in the doctors and nurses of the PICU. Parents are scared and rely on the expertise of the medical professionals to get their children back to health; this was especially true for us during our first trip to the PICU when we were in total shock about our sweet, beautiful 3-year-old son receiving such a difficult diagnosis.
We were comforted by the intensity of care at the time because we were so new to the medical world. We were also struck by the strictness of rules. It felt a bit like a prison, and at that time we did not fully understand the reasons for the strictness regarding who could enter the PICU, where we could eat, and so forth. Tony was allowed numerous visitors while on the neurology floor the couple of days before his surgery, so when we were told Tony’s brothers could not visit with him after surgery in the PICU, we were shocked and saddened. Thankfully, Tony’s brothers were permitted a very brief visit, just so they could be reassured Tony was OK. It was a necessary visit during a time full of fear and uncertainty.
While there, we met one mother in the kitchen whose child had been in and out of the PICU for his whole young life of less than 2 years. We began to get a picture of how fragile life can be, a thought that rarely occurs when one is around children. This PICU stay only lasted a couple of days, because Tony progressed very quickly to the point at which he no longer required intensive care. Leaving the PICU that day felt good, because we knew it meant Tony was on the road to recovery from his surgery. That was our primary focus at the time. The future battle was before us, but we could not focus on that just yet. At that time, we did not have a complete understanding of Tony’s condition, but we knew metastases were found throughout his spine and in another spot of the brain. We were terrified about the future, but our primary focus was in the moment—comforting Tony toward healing while also supporting his older 3 brothers. As we left the PICU, we thanked the staff and told them we hoped to never see them again, at least not in the PICU.
The Middle
Tony’s second visit to the PICU was not planned, and occurred because of emergency circumstances, which is the more common scenario for entry to the PICU. We were sent to the PICU via the emergency department when seizure activity was suspected and Tony would not wake up. It was eventually confirmed Tony was, in fact, experiencing cluster seizures that could not be stopped by ordinary means. Tony had to be placed in a medically induced coma, which required intubation. Tony had already undergone 31 craniospinal radiation treatments and intensive high-dose chemotherapy followed by an autologous stem cell transplant. He had clean scans for almost a year, but experienced a relapse in June 2010. We were told that no treatment existed for relapsed medulloblastoma. None of the treatments we had tried were working, but we were awaiting a new treatment when the seizures started. We were not only terrified by the seizures but also unable to do anything about Tony’s brain cancer because of the seizures.
At this point, we were no longer new to the medical world. We had now lived more than 2 years as a family with a seriously ill child. During this stay, Tony remained in the PICU for almost 12 days, which was a long time in the PICU world. The time spent with PICU staff was intense and emotional. This visit was the first time we had an immediate concern about Tony’s life. Compared with our first PICU visit, we were now much more aware of what was happening around us. During Tony’s journey, we had come to know many other children with cancer or blood disorders, and we knew of way too many who had lost their lives in the PICU. It was a hard place to be, not just because of our own ordeal, but also because we knew everyone on the unit with us was facing a potentially life-threatening situation with a child or teen. We would sometimes talk with parents in the kitchen or just meet their eyes as we passed in the hallway. The fear, helplessness, and hope were so evident. We remember a night when individuals were being brought to the room next to us, a few at a time, seemingly to say their final goodbye to the sick child or teen being cared for there. We never had this confirmed by the PICU staff, because they do a great job maintaining confidentiality and calm on the floor, but it struck us then that life and death sometimes hang in the balance in the PICU.
Prescription: family time
During this scary stay in the PICU, we were thankful to Child Life staff who helped us prepare our older sons for what they would see when they visited Tony, given that Tony was in a medically induced coma, on a ventilator, and had been unresponsive for days. We recall Tony’s attending physician entering the room during the family visit and commenting, “this is better for Tony than anything I can do for him.” We so appreciated that, even with the strict PICU rules, family interaction was recognized as an important part of Tony’s healing.
During this PICU stay, we continued to experience the patient- and family-centered care that is part of the hospital environment. We were invited to join both morning and evening rounds. We had an almost constant flow of professionals entering Tony’s room, so we appreciated it when they introduced themselves to us. At this point, we had experience on the oncology and bone marrow transplant units, but life on the other medical specialty floors is quite different from life in the PICU.
The End
Tony had another brief visit in the PICU when his oxygen dropped during a seizure, but his final visit to the PICU began almost 2 weeks before his death. Tony developed a side effect from his chemotherapy and/or tumor growth that required him to receive an intravenous medication that could only be administered in the PICU. We were sent to the PICU not because Tony’s physical condition warranted it, but because of the medication he needed. We were not aware that his death was imminent, nor were his treatment providers. We have since had discussions with Tony’s doctors about how difficult it is to predict death ( Fig. 2 ).
Missed opportunity: family time
Although most of our experience with the PICU staff was positive, we did have one major problem situation while Tony was there—one that bothers us even more now that Tony is gone. The issue involved 4 members of the nursing staff denying visitation to our 10-year-old son, Max, just 10 days before Tony’s death. On this evening, Lynne brought 2 of Tony’s brothers for a visit. Tony’s 14-year-old brother, Ben, met the age criteria for visitation, but the 10-year-old did not. We informed the day nurse of the upcoming visit and were under the impression that it would be no problem for Max to visit. However, when we arrived, we were told Max could not visit because Child Life staff were not available to “approve” his visit.
We were confused and frustrated on hearing this. The nursing staff told us Child Life needed to approve all visits for siblings younger than 14 years (we later learned the actual visitation policy says sibling visits can also be approved by the charge nurse). The nursing staff agreed that Max did not pose a medical risk to Tony, but they needed to be sure Max was emotionally prepared to handle what he might see in the PICU. We understand the importance of this preparation in some situations (eg, child severely injured in a car accident), but there was no need for this type of screening in this situation. Did they have any knowledge of Tony’s medical history at all? We of course shared with them that Max had been previously cleared by Child Life and had visited with Tony when Tony was in a pentobarbital-induced coma and intubated seven months earlier; Tony’s current condition would not be remotely upsetting for Max, given other things Max had seen regarding Tony’s treatment. We were told they have 30 families, and if the rules were bent for us, they would have to bend the rules for anyone. (We went through the proper channels to arrange this visit; PICU staff dropped the ball somewhere). Furthermore, because Max was denied visitation, one parent was in Tony’s room while the other parent had to stay with Max in the waiting room. Therefore, we were not able to address this issue together with the nurses. Rather, we each took turns going to Tony’s room to discuss the issue with the nurses. We spoke with Tony’s night nurse, the charge nurse, nurse manager, and manager of patient services. We were continually told the PICU is different from other floors. We reminded them that we were aware of the difference, considering this was our fourth trip to the PICU with Tony in the almost 3 years since his diagnosis, and reminded them of the particularly difficult hospitalization he had 7 months prior when he was intubated and in a coma. In the end, we were told by the Manager of Patient Services that she was “the ultimate authority in the hospital” that night. Talk about feeling helpless! We were already fearful about Tony’s condition, because his medical condition precluded him from getting chemotherapy during the past 7 weeks for his growing brain cancer.
For a hospital that prides itself on being patient- and family-centered, this was not at all a patient- or family-centered experience for us. We were honestly shocked at the rigidity and lack of compassion these individuals showed, because this had not been our typical experience at this hospital or in the PICU. The staff was wrong to respond in the way they did. In the end, it felt like a power struggle where they were determined to win, to the detriment of our sons and family. Tony had been in the hospital most of the time during the prior 2 months, which meant our family had very little time together, especially Tony and his brothers. Every moment together was precious. As a family full of helpless feelings, we tried to maximize time spent as a family; that was something we could control, at least until it was denied us. On this particular evening, Tony was awake and interactive, which was a rarity because he was often tired and not feeling well when his brothers visited. It was a missed opportunity, and an important one.
In trying to make sense of this situation, we thought about how it happened in the first place, especially in a hospital that stresses patient- and family-centered care. Following are some of our guesses, which we hope will elicit discussion among Critical Care teams.
Chronic versus acute illness/injury
It is our belief that part of the problem with the visitation denial rested in our family being treated as if we were new to the hospital setting and policies when, in fact, we were quite knowledgeable in these after almost 3 years of coping with our son’s life-threatening condition. It felt very much to us like these staff members had no idea about our son’s history or even his current status or prognosis. We wish these nurses would have recognized that, as parents of a chronically ill child battling cancer, we truly understood the importance of safety and health. Of course, no safety or health issues were present in this situation. We wish it would have occurred to them that Tony’s brothers had witnessed many upsetting situations in the prior 2.5 years and that, with Tony’s prognosis, spending time together was a priority. Separation was more upsetting than witnessing Tony’s current health status. We wish they would have realized that Tony spent most of the prior 2 months in the hospital, thus making family time extremely difficult and precious. We wish their focus would have been in line with that of families like ours, to “treasure every moment,” which became (and remains) one of our family’s primary themes. We wish we could get those precious minutes back so our boys could have that time together.
Day shift versus night shift
Typically, we interacted less with night shift than with day shift staff, simply because, it was our hope, much of the night shift would involve sleep time. We wonder if night shift staff have sufficient time to get to know their patients. Also, how well did the day and night shift nurses communicate with one another? The day nurse led us to believe that all had been arranged for Max’s visit, but the night nurse did not comply.
Frequent change in nursing staff
Nursing staff usually changed on a daily basis (or perhaps every other day), but the team of doctors changed weekly. Therefore, although we spent more time with nurses, we had greater consistency in our relationship with the doctors (at least that was our experience in the PICU). We also had the same team of doctors during Tony’s hospitalization 7 months prior, so the physician team knew us well and what we had been through. They not only knew Tony and us (his parents) but even recalled the strength of Tony’s brothers. We had never had any interaction with this particular night nurse, the charge nurse, or the nurse managers. We wonder also how removed the nurse manager and manager of patient services might be from direct patient care. Have they forgotten the compassion needed for day-to-day interaction with patients and families?
Dynamics between physicians and nurses
To us as parents, the visitation denial felt like an opportunity for these particular members of the nursing staff to exert their power. In these situations, when focusing on enforcement of rules, it is important that the individual patient’s/family’s situation is considered. This would seem to be especially true in a critical care unit where some patients truly are fighting for their lives. Those in the PICU (and elsewhere in the hospital) who knew us and the details of our story would have readily approved this short visit that evening. We chose not to involve the attending physician in the discussion about visitation, because we knew he was tending to a critically ill patient and we did not want to bother him with our situation. We talked briefly with a Fellow about the issue, but were told by the nurses involved that this was a “nursing issue” and therefore it would not be appropriate to involve the doctors. We tried to be respectful of the nurse/doctor dynamic that we imagined might exist, and did not involve the physicians that evening. We witnessed how hard nurses work and how vital they are to health care. We were respectful of their role and did not want to usurp their authority by going “above them” to the physicians.
An opportunity for learning
As the family of a child with a life-threatening illness, we had been through so much in the prior 2.5 years and often had to cope with the reality that there was only so much the hospital staff could do to help our son. However, this was a situation in which the hospital staff could have easily done something to help Tony and our family. They simply chose not to, seemingly just because they had the power to do so. On top of our other stress from that day and the prior few months, this situation added significant stress to our family. We all had great difficulty falling asleep that night because we were so upset with how we were treated. We were frustrated by the missed opportunity for Tony and Max to interact (even briefly) when Tony was actually awake. We were sad about the shift in our feelings toward the hospital staff, because we had typically felt that we were treated with the utmost compassion. Added stress was certainly not what we needed at this time in our lives, and I am sure that is the case for any family in the PICU. It seems that anyone working in the PICU would have a greater appreciation for the preciousness of every moment a family has with their loved one; they certainly should.
Weeks later, we eventually brought this matter to the attention of the hospital’s Director of Nursing because we wanted to do what we could to prevent other families from having a similar experience. Even though it appeared to us this issue might have been circumscribed to this small group of nurses, these particular nurses were among the management team within the PICU. It concerned us greatly that these individuals might be teaching newer staff these practices. Many doctors and other nurses apologized to us for the visitation denial, but none of the 4 nurses involved in the denial did so. Did they ever conclude that what they did was wrong? Would they do the same thing to another family? Thankfully, the senior nursing administrators of the hospital were appropriately apologetic and made no excuses for the behavior of their nurses on that evening. We have been told changes have since taken place within the PICU such that compassion and an individual patient’s unique circumstances are hallmarks of important decision making. In the end, we understand people make mistakes and we are thankful our concerns were taken seriously by the senior nursing administration. We sincerely hope the staff will continue to be reminded of our story in order to maintain the changes they are making.
A return to family-centered care
Our story ends on a note of truly family-centered care. On July 3rd, 2011, Tony’s status changed. We made a last ditch effort to relieve pressure on his brain. The PICU staff coordinated with all of Tony’s treatment providers—over a holiday weekend, no less—to help us make the hardest decisions of our lives. In the end, there was nothing more that could be done to preserve Tony’s life, but there was much that could be done to help our family. The PICU staff knew of our large family and how important they are to us. They also knew of our strong faith. Our very large family was permitted to visit with Tony in his final days. They joined in when the priest gave Tony his last rites. We were now that family bringing in family members, a few at a time, to say their final goodbyes. The staff answered our many questions and assured us that whatever decisions we made would be the right ones. They provided the reassurance we needed to hear that we were making loving choices for Tony. As we, Tony’s 3 brothers, and Tony’s grandparents watched Tony take his last breath, the PICU staff remained professional but were also full of compassion and love. They exemplified the family-centered care we had come to know as the “norm” within the hospital. We continue to be grateful ( Fig. 3 ).
