Dr. Peter Phillips

Schoemaker Professor of Neuro-Oncology
Director, Neuro-Oncology Program
The Children’s Hospital of Philadelphia

How and when do you raise the issue of autopsy donation?
At The Children’s Hospital of Philadelphia we have a well-established approach to end-of-life planning. The starting point is a discussion in which we address a range of issues, including autopsy tissue donation.

Are you the only member of the medical team present during this discussion?
No. At a minimum we include the family’s lead nurse practitioner and social worker.

Does autopsy tissue donation always come up during these discussions?
No. Sometimes we choose not to discuss it. About 15 to 20 percent of families hold out hope of a miracle cure for their child. Any discussion of death-related issues, including autopsy donation, is something they just do not want to hear. We want to respect their feelings.

What do you tell families about autopsy tissue donation?
I explain that it is an opportunity to contribute something that will last beyond their child’s lifetime. I tell them that, as our surgical techniques have improved, the amount of tissue removed during biopsy and surgery has diminished, and therefore not much tissue is available for study. At no time has it been more important for us to have tissue than now. Twenty years ago all we could do was look at the tissue under a microscope and look for DNA targets for treatment. Now we have a universe of different targets that we are trying to understand, and we need donated tissue to study these targets.

What do you tell them about the autopsy process?
Many families are not familiar with the concept of a limited autopsy. I tell them that the goal of the procedure is to extract tissue to be used for research, not to provide them with information on the causes of their child’s death. The autopsy is an acquisition procedure used to obtain as much tissue as possible. The difference between a biopsy and an autopsy is that during an autopsy we remove as much of the tumor as we can. I also let them know that the autopsy will be done in a medical setting that does not dishonor the body in any way.

What questions do families generally raise about autopsy tissue donations?
They ask if they will be able to have an open-casket funeral. The answer is yes. I let our families know that it is not disfiguring. They also ask about logistics and timing issues. Generally these issues can be resolved in a way that is comfortable for the family.

How do you follow up with the family after the tissue donation?
We contact all of our families by phone two and four weeks after death, and then again as needed. If a family has donated tissue, I thank them during this conversation.

Do you provide the family with any autopsy results?
If families are interested, we will share the autopsy findings. We do this in person at a meeting that takes place in a non-clinical setting.

Do you share information on research that is done on the tissue?
Occasionally, I have shared with families that we have been able to obtain cultures or mouse models from the tissue. They do not typically ask for this information. However, families are becoming more empowered, and I would expect that this is a request that will be made more frequently in the future — and we will provide families with whatever information we can.

Do you have any recommendations regarding donation logistics?
Yes. Plan ahead. Notify the pathologist and funeral home as soon as possible, and provide them with as much information as is legally possible on the patient and a rationale for the procedure. They will do a better job if they are fully invested in the process. Obtain consent from families ahead of time.

Dr. Sharon Gardner |  Dr. Ute Bartels |  Dr. Peter Phillips |  Dr. Katherine Warren