By Heather Brandon

Joel Frader, MD is Professor of Pediatrics and Professor of Medical Humanities and Bioethics at Northwestern University in Chicago. Dr. Frader is also Chief of the Division of General Academic Pediatrics at Children's Memorial Hospital, a job that includes supervision of care of acutely ill, hospitalized children, and palliative/hospice care for children.

On Friday October 28, 2005, Santa Clara University is hosting a conference called "California Faces End of Life Choice: Legal Issues and the Contemporary Controversy." Dr. Frader is a presenter on medical care decisions for children at the end of life.

I conversed with Dr. Frader via email to discuss what he has learned about our expectations about death, and health care, in a society strongly influenced by technological discoveries and pursuits.

How does your work intersect with examining death?
In the last couple of years, a young colleague and I have done a study asking
parents of critically ill children—children in pediatric intensive care
units—how they would want to make decisions about end-of-life care. Decisions include things like limiting life support, continuing life support even if the doctors recommended against it, and so on, if they faced that problem.

Deaths, even in such a setting, are rare, so it would be very hard to identify children at high risk of dying and thus only ask the parents of those kids. We set out to find out if there were systematic differences among families in different ethnic groups.

We do not have large numbers, but it appears as if African American parents, and perhaps Latino ones, want to continue life supporting measures even when doctors recommend discontinuing interventions. We do not think, though can not completely sort it out, that the differences among groups can be explained on the basis of class/socioeconomic status.  There appear to be differences based on group identity, rather than class.

Based on previous work by others, it seems that somewhere around 60-plus per cent of deaths in US pediatric ICUs happen as a result of a deliberate decision to stop interventions. This seems to be very different from what happens in Latin America, and southern Europe—Spain, Italy, southern France—and Hong Kong, where interventions continue until the child cannot be resuscitated.

What brought you to this work?

I have been interested in this since my medical school and residency days. Then 1970s, decisions to forgo treatment in pediatrics were rare and completely chaotic. Some decisions involved children with disabling conditions (Down syndrome, spina bifida) but generally there was no systematic thinking. I started out trying to make sense of how people thought about these things and have been working on it—mostly doing ethical analysis rather than empirical studies—since. I have only recently returned to empirical studies.

I'm curious about how you approached asking families about how they would decide about end-of-life care. The question was purely speculative for these families? How confident can you be that their answer would reflect what they would truly choose to do?
In one sense the question was speculative for the majority of the 70-plus parents interviewed. That is, there were four or five deaths in the group. However, more than 50 per cent of the parents expressed serious worry that their child might die during the incident PICU stay.

Death rates in modern tertiary-care PICUs, like the ones in our study, run around five per cent. It would be extremely difficult either to predict who is likely to die—folks have tried, with low levels of accuracy—or to accumulate enough families faced with actual life-and-death decision-making, in a reasonably contained period of time, without a large multi-site study. We may get there some day, but it was not feasible for this study.

We have not yet done the separate analysis of the interviews of the parents whose child died. But I suspect that won't help much, because of the low numbers, and the fact that the interview and the time of death were likely fairly distant. I don't know that; I am guessing on the basis of the patterns of ICUs deaths. It's either very quick, in which case, the families would not be in the study, it's or weeks or months after admission.

When you say that you think differences in choices around end-of-life can be explained based on group identity, rather than class, how do you define group identity?

We used self-identified groups based on ethnicity: white, African American, Latino/Hispanic, other (Asian, etc.). We chose not to get into details with these small numbers, such as Mexican versus Puerto Rican versus Central American.

Have you traveled to other continents and countries to see how pediatric end-of-life issues are handled there, first-hand?

Nope. Nice fantasy, though.

Do you have anecdotes to illustrate the differences you mentioned between the US and other places?

There is emerging literature on this—a lot from the Netherlands, some more from the rest of Europe and some about Latin America. See my publications related to this [below], and the articles they comment on in the same issues of the journals, Pediatric Critical Care Medicine, and the Journal of Pediatrics.

Frader, J.: Forgoing life support across borders: who decides and why?
Pediatr Crit Care Med 2004;5(3):289-290 (see the abstract).

Frader, J.: Surveying euthanasia practices: methods and morality. J
Pediatrics 2005;146(5): 584-585 (see the abstract).

Dr. Frader also has an article in Forbes.com about supporting euthanasia for terminally-ill kids.