Pediatricians in Training and End-of-Life Care: Better Prep is Needed

Researchers from the Johns Hopkins Children’s Center have found that while most pediatric residents have broached the subject of ending life support in terminally ill children, many feel neither comfortable nor sufficiently trained to discuss it.

“At some point, most pediatric residents face the difficult but necessary conversation on how and when to end life support for terminal patients, yet our study shows that many residents feel they are inadequately trained to conduct the conversation on their own,” says lead author Megan McCabe, M.D., a critical care specialist at the Children’s Center.

The study, which surveyed 40 pediatric residents at the Johns Hopkins Children’s Center, revealed that 93 percent of residents had encountered an end-of-life discussion at some point in their training. Of these, half were actively involved in the discussion, one-third were observers and 10 percent had to lead the discussion. Fewer than half of the residents reported being taught how to talk with patients and families about limiting or ending life support.

End-of-life care should be taught in medical school and continue throughout the residency, researchers advise, with special focus on trainees who are going through oncology or intensive-care unit rotations, where end-of-life discussions are most likely to occur.

Co-authors on the study: Elizabeth Hunt, M.D., and Janet Serwint, M.D., both of Hopkins.



Kids High Blood Pressure Often Missed

High blood pressure in children often goes unnoticed at the doctor’s office, and many children go home without follow-up or treatment, suggests a study from the Johns Hopkins Children’s Center.

Researchers combed through six months of records detailing visits to the Children ’s Center outpatient clinic and found that of the 1,908 children who had their blood pressure measured, more than a quarter (518) had elevated blood pressure. Yet 91 percent (470) of those with elevated blood pressure went unrecognized, meaning the doctor didn’t follow up by taking a second measurement or by ordering further tests.

“If our findings extend beyond our clinic and indeed beyond Baltimore — and we think they do — this means that hundreds of thousands of children in this country might have high blood pressure and are not being followed or treated for it,” says lead author Tammy Brady, M.D., M.H.S., a kidney specialist at the Children’s Center.

If untreated, persistently elevated blood pressure, or hypertension, can lead to kidney damage, narrowing of the arteries (atherosclerosis) later in life and left-ventricular hypertrophy (LVH), a thickening or enlarging of the lower left chamber of the heart.

Pediatric guidelines say that any elevation in blood pressure measured in children on three consecutive visits is by definition evidence of hypertension.

In adults, blood pressure parameters are clearly defined. In children, however, doctors must factor in age, gender and height to determine whether the blood pressure is normal. To cut down on the cumbersome arithmetic, doctors at the Children’s Center are designing a computer program to do the calculations and alert providers if a child’s blood pressure is out of range. The program should be ready for testing by the end of the year.

Studies show that high blood pressure is found in up to 30 percent of overweight children and in about 5 percent of children of normal weight. In the study, children with high blood pressure with a lower body mass index (BMI) and no family history of heart disease were more likely to go unnoticed—possibly because a child of healthy weight doesn’t raise a red flag as much as an overweight child, researchers say.

“Overweight children are at higher risk, but high blood pressure can happen in anyone and rarely causes symptoms,” Brady says. “The absence of signs is not a sign of absence, and we, as health care providers, must screen, monitor and treat all children, regardless of how healthy they appear and regardless of family history.”



HIV and Teens: Many Pediatricians Still Follow Old Testing Rules

Despite new guidelines from the U.S. Centers for Disease Control saying that all teens be routinely tested for HIV, many pediatricians continue to test only patients with high-risk behaviors, according to a study from the Johns Hopkins Children’s Center.

A survey of 60 physicians and nurse practitioners showed that even though 92 percent support routine testing in theory, in practice, two-thirds said they follow the old guidelines and offer HIV testing only to high-risk teens, such as those who have a history of sexually transmitted infections, report sex without a condom or inject drugs.

“Testing based on risk is risky because it may miss teens who might be already infected or at high risk for HIV, yet don’t report their risky behavior to the doctor or are simply unaware of their risks,” says lead author Renata Arrington-Sanders, M.D., M.P.H., a pediatrician at the Children’s Center.

In 2006, the CDC issued new, more encompassing guidelines that call for routine HIV testing of all people between the ages of 13 and 64 regardless of risk profile. Under the old guidelines, only people engaging in high-risk behaviors or those living in areas with high prevalence of HIV were offered testing. Health officials say routine testing will lead to earlier diagnoses of asymptomatic people infected with HIV, decrease transmission to others and prevent complications of untreated HIV infection by starting therapy earlier.

In the survey, slightly more than one-third of health care providers reported that they were familiar with the new CDC guidelines, while only 10 percent had actually read the guidelines, a
finding that points to the need for continuing medical education as well as daily reminders to providers, such as asking them to wear “get tested” buttons or sending them e-mail alerts.



Even Mild Kidney Disease Harms Quality of Life

Challenging prevailing wisdom that only children with end-stage kidney disease suffer physical, emotional, social and educational setbacks related to their disease, research led by the Johns Hopkins Children’s Center shows that even mild and moderate kidney disease can cause such problems.

In a study of 111 children with mild to moderate kidney disease, researchers analyzed the link between level of kidney function, disease severity and age of onset on the one hand, and physical, emotional, psychological and school functioning on the other, all dimensions of what experts call health-related quality of life.

In the study:
• Nearly one-third of children and their parents reported poor overall quality of life.
• Nearly one-third of children reported physical pro blems, such as fatigue, low energy, and difficulty exercising or playing sports.
• Nearly half the children and parents reported problems at school, including difficulty concentrating, forgetfulness, and trouble keeping up with school work or missing school because of not feeling well.

“Our findings suggest that even mild and moderate declines in kidney function cause major quality-of-life problems,” says lead author Arlene Gerson, Ph.D., a kidney specialist and psychologist at the Children’s Center. “What this means is that we should be thinking about screening these children and intervening earlier in the disease than we had thought.”

For example, children who report learning problems may benefit from help before their academic scores drop, researchers say. Children with chronic diseases currently do not qualify for special education until their academic scores decline dramatically.

The report is part of an ongoing, 57-center study funded by the National Institutes of Health, the largest ever on early kidney disease in children.



Doctors: Parents of Dying Newborns Need Clearer Explanations of Care Options
Parents found doctors’ language “confusing”

A small study of conversations with 26 parents of babies who died shortly after birth found that what parents said they had been told about treatment or end-of-life options was frequently at odds with what caregivers reported in the medical record.

“Birth is a stressful time for every parent, but our study shows that the parents of severely premature babies or babies with life-threatening defects may be so confused by the often technical and vague ‘doctor speak’ during what is a highly emotional time that we may be speaking different languages,” says lead author Renee Boss, M.D., a neonatologist at the Children’s Center.

“The bottom line is that parents of critically ill newborns are so overwhelmed that they are often and understandably confused about life-sustaining or non-life-sustaining options, and we need to do a better job of communicating,” Boss says.

A range of choices exists for managing critically ill newborns with grim prognoses, from orders to perform aggressive resuscitation to compassionate care through the end of life. Parents and doctors must often make complex decisions in a matter of minutes.

Researchers say their findings should be heeded as a call for new, clearer guidelines by the American Academy of Pediatrics on how physicians should discuss life-sustaining options with new parents.

The study showed:
• Doctors’ predictions about a baby’s outcome had little effect on what course of action the parents chose.
• Religion and spirituality played a central role in that decision.
• Few parents reported being given multiple options.
• Few parents recalled discussing resuscitation as an option at all. However, medical records often indicated that such options were discussed.
• Parents found doctors’ language confusing, such as calling a baby “unstable” instead of explaining that the baby may die.

The Pediatric Academic Societies’ meeting is the largest gathering of pediatricians and pediatric researchers in the United States. The Pediatric Academic Societies represents pediatricians who practice, teach and conduct research at academic health centers. Member organizations are the American Pediatric Society, the Society for Pediatric Research, the American Academy of Pediatrics and the Ambulatory Pediatric Association.