consent

The capacity in which I deal with consent processes is quite different from the issue at hand in the story below. The people I am obtaining consent from are in a research setting, not a treatment setting. Thus, in the contexts I am most familiar with, the issue of withdrawal or refusal on the part of the patient/participant is to be assumed a basic right. As a researcher, I am very careful to not only explain this but to make the environment felicitous to such a choice on the part of the people who reply to recruitment for our studies. As a teacher, I give my students examples of behavior which would constitute a "cost" for withdrawal, such as adopting even a negative tone of voice or posture with a potential or actual participant.

My point is, I am biased. I realize that this withdrawal/refusal bias is not quite appropriate when it comes to medical treatment as opposed to behavioral (or medical) research. So I try to keep that in mind as I turn over the story below about a mother who refused two (related) types of Lupus treatment for her minor daughter. Still, I can't help feeling that the choice to bring neglect charges here was a poor one. How much information was she given? And most importantly, were the medical providers aware of and sensitive to the reality of this woman's distrust which was fueled by - if not entirely based on - the suffering her daughter was experiencing?

It's not the best written story. As with any media account, there is trimming and fluffing. I've taken out what seems to be fluff but I can't make up for the lack of information. Still, it's the only story on this case out there at the moment. It's a tragic situation, one I can't help relating to somewhat since I also have trust issues with medical providers which have lead to some very and I'd say inappropriately contentious encounters. I can only imagine I'd be the same way if I had a kid who was sick.

I present the information in the article as food for thought. The issue being not whether the mother's judgment was correct or incorrect but whether the issue of patient or patient advocate/guardian trust could be better recognized and better addressed in such situations.

Excerpted from the Hartford Courant
Girl In Medical Dispute Dies
By Hilary Waldman and Colin Poitras, Courant Staff Writers
March 12, 2008
Chelsey Cruz, a 15-year-old who ended up at the center of a custody battle between her mother and the state that left each side accusing the other of harming her, died suddenly Tuesday.

The state Department of Children and Families last August filed charges of medical neglect against the girl's mother, Kimberly Castro, and took custody of the East Hartford teenager.

Castro had disagreed with three teams of doctors who treated Chelsey for lupus.

DCF stepped in following a complaint by child welfare authorities in Massachusetts. Chelsey at the time was being treated at Children's Hospital Boston.

Doctors from Connecticut Children's Medical Center in Hartford and Yale- New Haven Children's Hospital had filed complaints with Connecticut authorities, contending that Kimberly Castro was hurting her daughter by objecting to the treatment they recommended. Those charges did not stick.

After the Boston complaint, however, DCF placed Chelsey in the custody of her grandfather, who agreed to follow the doctor's orders. Both sides were awaiting a final ruling in the case when Chelsey died.

In an interview last autumn, Chelsey, an honors student, said she felt her mother was acting in her best interest. She said her biggest wish was to go home and be healthy.

"I feel kind of angry that I'm not able to be with my mom right now," Chelsey said in October.

Michael Perez, Castro's court-appointed lawyer, said Chelsey was taken to Connecticut Children's Medical Center Tuesday morning and probably died of cardiac arrest caused by sepsis, an overwhelming infection that can shut down the body's organ systems very rapidly. Perez said an autopsy is planned to determine the exact cause of death.
...
The dispute over Chelsey's care began almost six years ago, when doctors at Connecticut Children's Medical Center diagnosed the girl with lupus, a disease in which the immune system mistakenly attacks the body's healthy tissue.
...
Chelsey, her doctors said, had a serious complication called lupus nephritis, which can cause devastating kidney damage. They prescribed steroids and an immediate intravenous infusion of Cytoxan, a drug approved for cancer treatment that has shown promise in stopping or slowing immune system attacks in lupus patients.

When Chelsey continued to be wracked by complications, including abdominal pain and diarrhea, her mother lost faith in the doctors at Connecticut Children's Medical Center. Castro transferred Chelsey to Yale-New Haven Children's Hospital. There, the doctors found that Chelsey's kidneys had failed.

They blamed the lupus, but Kimberly Castro blamed the medication.

At Castro's request, the Yale doctors switched Chelsey to a newer form of treatment. But that, too, caused serious side effects and Castro objected to that, too. That's when Yale called DCF, accusing the mother of medical neglect.

After an investigation, DCF determined that Castro simply no longer trusted the doctors. As a compromise, DCF and Castro agreed that Chelsey's care be transferred to Children's Hospital Boston.

But it wasn't long before the same fight Castro had at Connecticut Children's and Yale broke out in Boston. Castro did not want any more Cytoxan or the alternative drug, Cellcept. The drugs, she said, were killing her daughter.

After a lot of angry back-and-forth, an order of protection was signed in Massachusetts in late August. Until Chelsey was returned to her grandfather's home in East Hartford, a uniformed guard was posted outside her room in Boston to prevent Castro from taking her daughter out of the hospital.
...
Perez said a Superior Court trial on the medical neglect charges had just concluded in February and that Castro was awaiting a ruling. And he said, she remains convinced that the strong medications were too much for her daughter.

"Ms. Castro strongly believes there is a connection between the drugs that were being used and the results today," Perez said.
....

creepy cat

(Sunday, July 29: Updated with NEJM link)

This was just too odd to pass up. My father raised my siblings and me with what's best described as an unhealthy sense of skepticism. Such unwillingness to ever suspend disbelief might make for being a good scientist but I've seen that over application can result in a somewhat annoying human. I often find I want to believe...but I'm always held back by skepticism, usually right from the outset. So on reading this story (excerpted below), my tendency is toward the assumption of a non-causal or at least not directly causal relationship between death and the cat.

I think that the article does a reasonably good job of keeping the report on the up and up though. Most likely because the doctors referenced in the article do.

When death comes calling, so does Oscar the cat

PROVIDENCE, Rhode Island (AP) -- Oscar the cat seems to have an uncanny knack for predicting when nursing home patients are going to die, by curling up next to them during their final hours.

His accuracy, observed in 25 cases, has led the staff to call family members once he has chosen someone. It usually means the patient has less than four hours to live.

"He doesn't make too many mistakes. He seems to understand when patients are about to die," Dr. David Dosa said in an interview. He describes the phenomenon in a poignant essay in Thursday's issue of the New England Journal of Medicine.

Death by indifference

From CBS News
Ignored By 911, Woman Dies In Hospital
Emergency Operators Did Little To Help A Woman Dying In A Hospital Waiting Room
Associated Press
Wed Jun 13, 11:30 AM ET

LOS ANGELES - A woman who lay bleeding on the emergency room floor of a troubled inner-city hospital died after 911 dispatchers refused to contact paramedics or an ambulance to take her to another facility, newly released tapes of the emergency calls reveal.

Edith Isabel Rodriguez, 43, died of a perforated bowel on May 9 at Martin Luther King Jr.-Harbor Hospital. Her death was ruled accidental by the Los Angeles County coroner's office.

Relatives said Rodriguez was bleeding from the mouth and writhing in pain for 45 minutes while she was at a hospital waiting area. Experts have said she could have survived had she been treated early enough.
...
In the recordings of two 911 calls that day, first obtained by the Los Angeles Times under a California Public Records Act request, callers pleaded for help for Rodriguez but were referred to hospital staff instead.

"I'm in the emergency room. My wife is dying and the nurses don't want to help her out," Rodriguez's boyfriend, Jose Prado, is heard saying in Spanish through an interpreter on the tapes.
"What's wrong with her?" a female dispatcher asked.
"She's vomiting blood," Prado said.
"OK, and why aren't they helping her?" the dispatcher asked.
"They're watching her there and they're not doing anything. They're just watching her," Prado said.

The dispatcher told Prado to contact a doctor and then said paramedics wouldn't pick her up because she was already in a hospital. She later told him to contact county police officers at a security desk.
...
A second 911 call was placed eight minutes later by a bystander who requested that an ambulance be sent to take Rodriguez to another hospital for care.

"She's definitely sick and there's a guy that's ignoring her," the woman told a male dispatcher.

During the call, the dispatcher argued with the woman over whether there really was an emergency.

"I cannot do anything for you for the quality of the hospital. ... It is not an emergency. It is not an emergency ma'am," he said.
"You're not here to see how they're treating her," the woman replied.

The dispatcher refused to call paramedics and told the woman that she should contact hospital supervisors "and let them know" if she is unhappy.

"May God strike you too for acting the way you just acted," the woman said finally.
"No, negative ma'am, you're the one," he said.


(from the Los Angeles Times)
"What's real confusing … was that she was at a medical facility," said Sheriff's Capt. Steven M. Roller, who is in charge of the Century Station, which handled the calls. "That poses some real quandaries."

At the same time, Roller said, the dismissive tone of the second dispatcher, who was not identified, was inappropriate.

"As a station commander, I don't like any of my employees getting rude or nasty with any caller, regardless, and in that particular case, obviously, the employee's conduct could have been better," Roller said. The employee received written "counseling," Roller said.

The unidentified dispatcher to whom Roller referred kept cutting off the female bystander [who had placed the second 911 call].

"Ma'am, I cannot do anything for you for the quality of the hospital there," the dispatcher said. "Do you understand what I'm saying? This line is for emergency purposes only…. 911 is used for emergency purposes only."
The woman replied, "This is an emergency, mister."
The dispatcher cut her off. "It is not an emergency. It is not an emergency, ma'am."
"It is," the woman said.
"It is not an emergency," the dispatcher replied.
"You're not here to see how they're treating her," the bystander said.
"OK, well, that's not a criminal thing. You understand what I'm saying?" the dispatcher said.
"Excuse me, if this woman fall out and die, what [do] you mean there ain't a criminal thing?" the woman said.
...
In the days leading up to her death, Rodriguez had sought care in the King-Harbor emergency room three times. Each time she was released after receiving prescription drugs for pain. On May 8, however, she did not leave the hospital but instead lay on the benches in front of its main entrance.

County police officers found her there and helped escort her to the emergency room. There, a triage nurse told Rodriguez that nothing could be done to help her.

Meanwhile, police ran a computer check on Rodriguez and found that she had a no-bail warrant for her arrest. As she was being taken to a squad car to be placed in custody, she became unresponsive. She died a short time later in the ER.