Quanity versus Quality Rare Disease PS
(May 18, 2010)
by Leisa Greathouse
Rare disease. Set these two words next to each other and it means that not enough people contract a particular illness; therefore, rare simply implies a small quantity. The age-old argument of quality vs. quantity becomes a determining factor in our culture and society when it comes to policy and decision-making. Certain judgments favor the needs of the many when they outweigh the needs of the few. However, negative consequences affect the minority, and the other side of this coin is too easily ignored.
It is time to reconsider this decision-making tactic, especially when it negatively affects children with life-threatening diseases. This blog article examines one example where this type of thinking and mind set is hurting the minority.
For the purposes of this example, minority specifically refers to neutropenic children. Children who are neutropenic have an unsafe white blood count that makes them vulnerable to infection, which can be caused by the slightest little bug. Because of their suppressed immune system, neutropenic children cannot have live plants and flowers in their hospital rooms when friends and family bring them as gifts. They cannot eat uncooked fruits and vegetables all because of the risk of catching an infection that could kill them. These children and their parents are on constant guard against germs, viruses, bacteria, and fungi. Because these children are on contact precautions they must wear a mask.
The University of North Carolina (UNC) Children’s Hospital provides a Recreation (Rec.) Therapy playroom that is used by neutropenic children. Unfortunately, UNC and the Ronald McDonald House of Chapel Hill (RMHCH) intend to divide up the Recreation (Rec.) Therapy playroom to make way for a Ronald McDonald Parent Room. To anyone on the outside looking in, this sounds like a worthy project—and it is!  However, the consequences to the children will have a negative affect. I am calling into question the place where the parent room will go.
UNC believes that the space warrants more use since only a few children play there. (At least I haven’t heard them say, “warrants better use.”) This is what has made it a question of quality over quantity. The partnership between UNC and RMHCH to squeeze in a parent room diminishes the quality of life that disease already steals from these children. In this case the needs of the few outweigh the needs of the many! In its current state, the playroom provides a child and their family immeasurable quality. And, has anyone considered what will happen to these children while the room undergoes its renovation? It may just be a temporary inconvenience, but these children’s lives may be temporary.
According to one hospital administrator I spoke with by phone, the hospital feels it needs to capitalize on their space. What UNC fails to recognize is that they have already achieved an important goal for this space—providing an adequate area for their patients to play. Cramming the parent room into space needed for child’s play is taking a step backwards.
As I understand it, the new parent room and the renovated Rec. Therapy room will be side by side, separated by a wall.  Parents will still be bringing their germs to that area in uncontrollable volumes. The chicken pox virus, for instance, can be spread from one person to another the distance of a hallway. How many of you are aware of how easy it is for chicken pox to spread? Imagine a parent who has come to the family room with a child who sat in a classroom that very day, or the day before, with a classmate who will find out two days later that she/he has the chicken pox. Bottom line—the parent room will bring greater risk of infection to children in need of isolation and preventative contact in the only place they can find refuge from the confinement of their hospital room.
Is the perceived benefit to healthy parents worth the risk to the sick children entrusted to the hospital’s care? Are numbers more important than children who live with acute or chronic diseases? Are we to wish that more children were susceptible to death by infection? How important is it for a family to use a parent room for a few days’ hospital stay vs. the quality of life provided by the Rec. Therapy playroom for a child and family who stay for months at a time?  How many parents are with their children for common procedures vs. those who are there because of life-threatening diseases? Is the quantity of parents whose child undergoes an appendectomy, for example, more important than the quality of time for families whose child’s prognosis could change to terminal at the drop of a hat? These questions, I fear, have gone unasked, unanswered, and under analyzed by both UNC and the RMHCH.
A smaller playroom will result in a lack of quality play space for children who need contact precautions. As it is, the space has limitations for children who can peddle toys they would otherwise play with outside. These toys help develop motor skills and strengthen weakened leg muscles. This is particularly important for a child who has been listed on medical reports as “failure to thrive.” Anyone who has ever read that phrase about her or his child knows it feels like a kick in the gut. Even if you have never seen that phrase about your child, you can empathize with those of us who have.
My son, Samuel, died of a rare blood disease called Langerhans Cell Histiocytosis (LCH). “LCH is a rare disorder that primarily affects children.  The disease was first described in medical literature around the turn of the 20th century. A histiocyte is a form of white blood cell.  Its job is to help destroy certain foreign materials and fight infection.  For unknown reasons, patients with this disease have too many histiocytes (Langerhans cells).  These cells accumulate in different organs and can result in cancer-like damage.” (Please visit www.histio.org to learn more about this, and other rare histiocytic disorders.)
Doctors at UNC Children’s Hospital treated Samuel for 16 months, using prescribed treatments developed by physicians and researchers from all over the world. Chemotherapy is the common ingredient.  Therefore, Samuel was constantly neutropenic. Eventually, either the disease or the treatment caused fibrosis in his bone marrow. He was prepped for a bone marrow transplant, which included a drug called Campath. Campath completely wipes out the bone marrow to make way for the new cells the body will receive. Complications with his liver prevented Samuel from getting a bone marrow transplant and for the last several months of his life, Samuel’s body had no immune system.
Few people could be around him and while inpatient, the playroom was vital for what little time he had outside of his hospital room, and the most important play dates I ever had with my son. I recently found out that UNC and the RMHCH have been working on the parent room project for five years. That was during the time my husband, Samuel, and I were literally living in the hospital. Each day my husband drove to and from work two hours away. Samuel and I spent our days in the hospital room, looking forward to our time in that all-important playroom as his treatment schedule allowed. I cringe at the thought of not having had that playroom five years ago when we needed it most. Because of Samuel’s neutropenic status, we were the only patient-family in that room. The hospital thinks it is fine to shrink the size of this room since it is only used by one child at a time. By doing so they are also shrinking its importance.
The Ronald McDonald House Charities have installed parent rooms in children’s hospitals across the country. According to the RMHCH director, the parent room will help families with lodging, meals, and other support services. I wonder though if these other parent rooms are located near areas where pediatric patients with compromised immune systems go to play. The services that a Ronald McDonald Parent Room would provide already seem to exist at UNC.
When Samuel, and my husband and I, “lived” on the 5th floor of UNC Children’s Hospital for nearly 16 months, we had a variety of resources available to us, including a social worker that helped us with our family needs, such as meals, and lodging if needed. (We didn’t seek lodging because it was our desire to stay with Samuel in the hospital room. We slept on air mattresses. Maybe the money for the parent room could be used to purchase resources like air mattresses for parents.)
What’s more, there are many family rooms located around the hospital. I can speak for life on the 5th floor. There is a family lounge with a microwave, sink, and refrigerator. There is a pantry for patients and parents, which the hospital keeps stocked with food and drinks of a large variety. The chaplain and child psychiatrist hosts weekly times for parents to come and speak with them, and they provide snacks. They hold these weekly sessions in the family room. There is also a new resource room located on the ground floor of the new cancer hospital.
Ronald McDonald Parent Rooms are needed in hospitals that lack the amenities UNC offers its patients’ families. If there are services lacking then maybe a better undertaking would be to solidify a more formal relationship between the RMHCH and the hospital’s social workers. Doesn’t the Ronald McDonald Charities have more in common with the services provided by social workers anyway? Isn’t a parent room possibly duplicating services? A well-thought-out and creative endeavor could centralize and organize both of the institutions assets. Such an initiative would be a model of collaboration for other institutions to follow in a time when the economy calls for us to be conscientious stewards of our resources. UNC would be a recognized leader. It is a more valid operation on which to hang a hat, as opposed to decreasing a sick child’s play space.
It seems to me the hospital administration did not fully discern the consequences of their actions and now it is at a point where they are uncomfortable in saying they have made a mistake because of money that has been spent on architect’s fees. So now the quantity of money interferes with the quality of life experiences for these children as well.
The playroom is a clean environment for children with compromised immune systems so they can leave the restrictions of their hospital room, stretch their legs, play with parents, and feel a sense of normalcy. How important is this playroom to a few children compared to additional services to lots of parents and families? The children need to come first. No matter how few children use the room, the room needs to be there for them when they can use it.
The Rec. Therapy playroom and that wing of the 7th floor in general, have been for the children. The parent room would introduce a whole new set of dynamics that would put pediatric patients at risk for infection. The area does not need any added congestion or population. Children will be exposed to more people who could possibly make them sicker. What is to prevent a child, who has a cough or cold from being with the parents who use the family room? What is going to happen when an adult walks out the parent room door and sneezes on a neutropenic child who just happens to be passing by on the way to the playroom next door? I do not understand the need of the parent room relative to the needs of very sick children.
UNC and the RMHCH have the distinct opportunity to reverse that age-old argument and favor quality for their pediatric patients over a self-professed quantity of parent needs. It is ironic to me that an institution that boasts of its promises to children isn’t keeping them.
The same day I was prepared to post this essay, I received a call from the UNC administrator I spoke with earlier. I was given the following update. The hospital will proceed with dividing up the Rec. Therapy playroom as planned. Their concession is to provide a second play area for children who need isolation. This second area will be taken from the large play atrium. On a positive note, it sounds like upgrades will be made to the atrium and to the new play area. I hope to get more information as the hospital finalizes their plans.
Furthermore, in a quick analysis of this situation, it seems that the letters and emails made a difference. Those letters contained the same content as this article, and apparently gave both parties reason to stop and think about their project in a way they had not considered. More importantly, for the future, it is promising to think they will see a larger picture and how anyone’s actions can affect another.