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By Christina Mangurian, MD
The pediatric bone marrow transplant team entered my ten-month-old son’s isolation room for a second time one morning. It was supposed to be Anderson’s “day of rest” between chemotherapy and his transplant. As a physician, I knew something was wrong—busy doctors do not do rounds twice. They had returned to tell me that the umbilical cord blood needed to cure my son of his rare condition, Wiskott-Aldrich syndrome, had been thawed a day early. The doctor who had just finished his fellowship said that the early thawing would not affect Anderson. He then went on to blame the lab, saying that the “mistake probably happened because we don’t really do many cord blood transplants here.” The nurse practitioner told me that she thought it was likely a communication problem and promised that “this will never happen again.”
At four months, Anderson had been diagnosed with the most severe form of Wiskott-Aldrich syndrome, a genetically inherited immunodeficiency disease affecting 1 in 250,000 men. Children with severe Wiskott-Aldrich syndrome die early of infection or hemorrhage if not treated with a bone marrow transplant (BMT). Children receiving a BMT from an unrelated donor or via cord blood donation can be hospitalized for up to three months—all in an isolation room because of the risk of infection. My family had already endured a three-week hospitalization when my son was only one month old, and I knew that I had to develop a plan to take care of not only Anderson but also my four-year-old daughter, my husband, and myself, physically and emotionally, during this marathon.
In stereotypical doctor fashion, I do not normally ask people to help me, nor do I prioritize taking care of myself. But facing an extremely long hospital stay with a critically ill infant and having an energetic (and thankfully healthy) four-year-old, I overcame my default tendencies. I knew the evidence that children do well, physically and emotionally, if their parents are doing well. So my husband and I developed a plan for self-care and family care based on discussions with the BMT team, families who had experienced BMTs, child psychologists, colleagues, and friends. We prioritized seeing both of our children every day, getting a good night’s sleep at home at least every other night, having breaks from the hospital to spend time together, and scheduling time to exercise. We created a detailed weekly schedule and asked family, friends, and colleagues to help us with child care, laundry, and other household chores. Thanks to the Lotsa Helping Hands website, many of our friends and relatives signed up to have dinner delivered to our home every night and gifts given to our floor nurses every week.
Despite all of our planning, the love showered on us by family and friends, and support from the BMT providers, nothing could prepare us for the reality of the hospitalization. Until I began “living” on the BMT unit, I hadn’t really understood what it was like to be on the other side of the patient-provider relationship. It opened my eyes to the universe of fear and vulnerability—where health care providers are in complete control, and patients (even those who are doctors) are at their mercy across a wide logistic and emotional divide.
The disclosure of the premature thawing of Anderson’s cord blood was just one example of a missed opportunity to bridge the emotional gap. Most patients want honest discussions and the opportunity to express their feelings about bad news. Unfortunately, the initial “bad news” discussion failed on both counts. When they told me the blood was thawed early, I was petrified that Anderson had lost his chance to live. It took all of my strength not to slap both clinicians and just scream. After the team left, the physician in me needed to mobilize: I contacted the lab supervisor at a major academic medical center specializing in cord blood transplantation to understand the gravity of this situation. Although this expert gave me information that reassured me, the phone call that day from our primary doctor, the chief of BMT who was on vacation at the time, really eased my worry. He apologized (using the words “I’m sorry”), took the time to explain why it was OK to do the transplant a day early, and said, “Anderson will be just fine.” In addition, the mother in me received the most important gift of all . . . a nurse gave me the space and permission to cry.
In another example, despite the scores of publications outlining the importance of sleep, there is an unfortunate disregard for sleep in all hospitals. Getting a ten-month-old to sleep can be challenging at the best of times. Add chemotherapy, pain, nausea, fevers, and vital sign checks every four hours and the sleep routine becomes extraordinarily complex. With additional interruptions—such as second year residents eyeballing the child at 9 p.m., noisy intravenous line changes at 10 p.m., or a dermatology fellow conducting a late-night exam and biopsy—the situation becomes a nightmare. I understand there are excellent clinical reasons for these interruptions—especially for critically ill children—but hospitals must start paying more attention to protecting the sleep of their patients and their carers, which could improve clinical outcomes and reduce emotional stress.
Feeling absolutely no control over this life-and-death situation, my husband and I struggled constantly with emotions such as vulnerability, fear, and anger. As a psychiatrist, I knew these feelings were normal, but there was no mental health professional on the BMT team assigned to help us. Social workers were available, but they seemed to deal with the “problem cases,” not the “easier” ones such as ours. Child-life specialists made my son’s daytime life “normal,” but they did not attend to my emotions. Thankfully, I had my own psychiatrist, my husband, my parents, and friends to turn to for the emotional support I needed. Many families are not so fortunate.
It struck me again and again that, because of the increasing complexity of medical care, doctors do not seem to have the time to take the “emotional temperature” of patients or their carers during prolonged hospitalizations, nor are providers thinking critically about essential, patient-centered concerns to facilitate wellness. In my opinion, we were treated at the best pediatric BMT unit in the country, but the empathic failures made me wonder about the emotional experience for families at other hospitals.
I believe that doctors who are treating children for prolonged periods should ask the parents how they are feeling about being in the hospital every day. If this is unreasonable given time constraints, then add a team member to fill this role. Again, there is plenty of evidence that children do better if their parents are emotionally grounded. By not being asked, parents may have the impression that the doctors don’t care, and clinicians may miss important warning signs of parental depression or anxiety that could negatively affect outcomes for critically ill children.
This is an excerpt of "The Missing Vital Sign." For the complete article, read the June 2014 issue of San Francisco Medicine.
Visit the BMJ website to read the original article with a comment from Morton J. Cowan, MD.
© 2014 BMJ Publishing Group Ltd.