Dr. Kathy Warren
Head, Neuro-Oncology Section
Pediatric Oncology Branch
National Cancer Institute
How and when do you raise the issue of autopsy tissue donations?
If a patient has a pontine glioma, I usually bring up tissue donation at the first visit in the context of what is currently known about the diagnosis. I explain to the family that our understanding of the biology of the disease is limited by the lack of available tissue for study, and I tell them that what information we do have comes from tissue obtained at autopsy. For patients with other diagnoses who have failed standard therapy and are coming back for relapse treatment, I discuss autopsy tissue donation in the context of what it can help us learn about the biology of relapsed or metastatic cancer.
Sometimes parents initiate a conversation about autopsy donation on their own. In these cases, parents might approach me directly, or they might initiate a conversation with another member of the medical team with whom them have developed a close relationship. In cases in which another member of the team is the initial contact, I try to include that person in the discussions as we move forward.
I almost never bring up the possibility of a donation for the first time when the child is near death. I have found waiting this long is unlikely to result in a parent consenting.
Do you bring up the possibility of a donation again, after the first conversation?
I plant a seed early on and then allow the family time to process it. Sometimes families bring it up later themselves, or if there is an opening I bring it up again. In most cases, it is a conversation we have on and off over time. The bottom line is that every family is different.
Are there certain words you use when you discuss tissue donation with families?
I use the word “autopsy.” I say it as straightforwardly as I can. I want families to understand that this is the process we use to obtain tissue. I also emphasize the importance of autopsy donations in helping us to better understand brain tumors.
How do families typically react?
When I discuss autopsy tissue donation with families whose children have been newly diagnosed with pontine gliomas, I find they are so shell-shocked that this one piece of information does not jump out at them. When I bring up autopsy tissue donation again when the child is at end of life, I usually know how families feel about it.
Do families sometimes feel like you’re giving up on their child when you ask them to consent to an autopsy?
No. I do not ask for consent until we have discussed other end-of-life issues. At that point, families understand that we have exhausted all curative options. No one I’m working with is surprised to hear the question, “Do you want an autopsy?” When it comes up, it’s an emotional conversation. But I have never had a family get angry. I have never had a family break down because we are talking about the possibility of an autopsy, although they may be crying because treatment isn’t working.
How often do families say “yes”?
Families say “yes” most of the time. However, I do not ask every single family. There is no one reason families say “no.” They may simply not want it. Sometimes their decision is religiously motivated. Sometimes the parents do not agree about whether they should proceed. It is important that they be in agreement.
After a family says “yes,” what happens next?
Children in my practice are usually not local, so we try to facilitate the process with their home doctors as much as possible. We do not want families to incur additional expenses associated with an autopsy. If certain expenses, such as transportation, are not covered, we will pay those expenses.
Sometimes the autopsy is performed at the funeral home and other times it is performed at a local hospital.
Many families that come to me are on Yahoo Groups and know of research being done elsewhere. If tissue is donated to us, we will also comply with their request to send it out to other researchers whom they specify.
Do families ask for results of the autopsies?
Families are interested in the research implications of their child’s donations and they want to know that as a consequence of their decision to donate their child’s tissue, they are contributing to research to find a cure. I send each interested family conclusions of studies to which include their child’s tissue has been submitted.
Dr. Sharon Gardner | Dr. Ute Bartels | Dr. Peter Phillips | Dr. Katherine Warren