TARGET 8: Missouri hospitals lack regulations on end-of-life care
COLUMBIA - Simon Crosier's parents said they were never told about key decision in their son's care before he died in the same hospital he was born just three months earlier.
It happened at St. John's Mercy Medical Center, which is now Mercy Hospital St. Louis, where Simon was born on September 7, 2010.
It was not until three weeks after Simon's death that Scott and Sheryl Crosier were able to look through their son's medical file and discovered the words "Do Not Resuscitate" - an order they said they had not approved or even been informed about.
When they dug further, they found Simon had been put on 'comfort feeds' in the placement of nutrition and water. Crosier said a doctor told her that comfort feeds only serve the purpose of keeping a baby from crying through the night; they do not supply any essential nutrients. The Crosiers said they did not give permission for this either; they were not even notified.
The Crosiers discovered their son Simon would be born with a condition called Trisomy 18 when they saw his clenched fists and cleft lip during their 20-week ultrasound visit.
Trisomy 18 is a rare condition that causes delays in development due to an extra chromosome.
The couple was approached about possibly doing tests to decide whether they wanted to terminate the pregnancy.
"We said 'no, we're not going to. This is our child. We don't care what he has. Termination is not an option for us,'" Sheryl Crosier said.
After Simon died, the Crosiers began reflecting on their experience with the hospital and digging deeper into the issue of end-of-life care, especially with cases involving babies born with genetic disorders.
Scott Crosier said every time he and his wife asked about different treatment options for helping their son, "I don't know" was the usual response.
"We were later told by a doctor, while we were in grief counseling, that doctors should never say they don't know," Crosier said. "He said, even if they don't know the answer, they should be able to get it for you in 24 hours."
What is a futility policy?
The couple was connected with Dr. Daun Allison, a physician in Bend, Oregon, who used to work at University Hospital in Columbia.
Allison walked the couple through the medical jargon in Simon's files and introduced them to the term "futility policy".
A futility policy is standard protocol for a hospital staff when there is a patient whose condition is deemed futile, or without cure. These policies include issuing "Do Not Resuscitate" orders, known as DNRs, and withholding care.
There are currently no laws in Missouri that regulate these policies or even require hospitals to disclose it to paitents.
This means all 165 hospitals in the state have separate procedures, with the exception of hospital groups that hold the same policy for each of their locations.
Also, these policies are not considered public information. The only way to find out if a hospital has one is to ask, and hope they will tell you what it is.
Where are these policies?
Target 8 reached out to dozens of hospitals throughout the state. Most of the hospitals were unwilling to state more than whether or not they had a policy, some did not even provide that.
Boone Hospital Center in Columbia was among those willing to say more.
Boone Hospital Center's supportive care program coordinator, Dorreen Rardin, said the center stresses on-going communication with families through these types of cases. She said she does her best to inform parents about how nutrients and resuscitation often won't help the patient and can sometimes lead to more problems. However, even if a family is not convinced, the center's physicians have the last say.
"If there's a case where the physician really believes that what they're doing is futile, and the child is going to die no matter what we do for it, there is a policy," Rardin said. "If two physicians state that this is futile care, they do not have to provide the care. They would communicate that with the family, and the family could then get another physician."
Rardin said someone would have to ask about the policy if they want to know what it is, but she discusses it openly with the families she works with. Rardin said she believes many hospitals in the state are transparent with these policies if they are asked but attributes Boone Hospital Center's particular care with these issues to its ethics committee.
When KOMU 8 News initially reached out to University Hospital, a doctor whose profile states he specializes in end-of-life care said he did not know whether the hospital has a futility policy. When KOMU 8 reached out a second time, a representative from the hospital said it does.
Other mid-Missouri hospitals who told us they have futility policies include Fulton Medical Center and SSM Health St. Mary's Hospital in Jefferson City.
Mid-Missouri hospitals without futility policies include Hermann Area District Hospital and Lake Regional Hospital in Osage Beach.
Allison said this issue does not only affect children with genetic disorders, but anyone who is hospitalized. However, she said patients suffering from futile conditions are most at risk.
"Let's say someone has diabetes," Allison said. "There is no cure for diabetes, so it is technically considered a futile condition. If someone has diabetes and is hospitalized with pneumonia, doctors could technically withhold care and issue a DNR for that patient because antibiotics and nutrients won't cure diabetes."
Allison said this example is unlikely to happen but creates a clear image for what happens to some children with genetic disorders.
"[The victims] may have had an incurable illness, but not receiving food and water will kill you too," Allison said.
While the Crosiers said they do not blame the hospital for the death of their son, they do believe the staff's actions quickened it.
Sheryl Crosier is making it her mission to spread her story to various communities of parents, medical personnel and legislators in an effort to create new legislation to protect families from this issue by requiring transparency with futility policies.
"I cannot bring my son back," Sheryl Crosier said. "But I want people to be aware and start asking important questions that could save a child's life."
(Editor's note: This story has been modified to reflect that Boone Hospital Center was not alone in offering to explain it's policies.)