Tissue Donation at the End of Life

When your care team discusses tissue donation at the end of life, we understand that you may feel a variety of emotions. We aim to offer an option that can give you a sense of hope and meaning during this difficult time. Your decision to donate your child’s tissue at the end of life can be one of the greatest gifts your family can give to others. These donations can bring hope for families of children diagnosed in the future by helping researchers find better treatments and cures for pediatric cancer, thereby continuing your child’s legacy for many years to come.

What is autopsy tissue donation?

An autopsy is a medical examination of your child’s body after death that is conducted by a specialist-physician called a pathologist. During the autopsy process, samples of tumor and normal tissue can be donated to support pediatric oncology research and help us learn more about your child’s type of cancer. The tissue that is donated will only be collected from the necessary sites (like brain tissue for a brain tumor) and unnecessary collections will not be made.

Will autopsy tissue donation help other children and the medical team that treats my child?

Yes. While there has been tremendous progress in the field of pediatric oncology, there are still many childhood cancers that need improved treatment and cures. Cancers can change over time and become resistant to treatment. Tissue that is donated during an autopsy helps us better understand the specific type of cancer that affected your child, and how best to treat the disease more effectively in children who will be diagnosed in the future.

What happens to the donated tissue?

The donated tissue can contribute to research in various ways:

• It can grow as a cell line and create living tumor cells that are used to understand how the tumor affects someone, and what treatments can work.
• It can be implanted into an animal to test new therapies
• It can be stored for future research

We will try to use the donated tissue in the ways mentioned above, but other factors like the amount of tissue and the timing of the autopsy procedure will determine how your child’s donated tissue will be used.

Who will have access to the donated tissue?

The donated tissue will be shared with researchers at Ann & Robert H. Lurie Children's Hospital of Chicago, Northwestern University Feinberg School of Medicine and in other research labs as appropriate. If your family has a preference for which facility receives the donation, please let us know. The donated tissue will be de-identified to maintain your child’s privacy (no identifying information will be used).

Lurie Children’s is one of five Centers of Excellence within the Gift from a Child (GFAC) network, a national initiative to increase end of life pediatric brain tissue donations through advocacy and education. For brain tumor donations, a sample of tumor tissue will be donated through GFAC to the Children’s Brain Tumor Network (CBTN), a collaborative, multi-institutional research program dedicated to the study and treatment of brain tumors. For more information about GFAC and the CBTN and its member institutions, please visit giftfromachild.org and cbtn.org.

What support will I receive to coordinate the tissue donation?

Lurie Children's/Gift from a Child's Tissue Navigator is available throughout the entire process. Our Tissue Navigator can answer any questions and should you choose to donate, they will coordinate all aspects of the donation.

What are the logistical considerations surrounding autopsy tissue donation?

Step 1: If you choose to move forward with an autopsy tissue donation, you will first need to review and sign the consent forms provided by the hospital. We will go through the consent forms with you and answer any questions you may have before signing it. You can change your mind and withdraw your consent at any point prior to the tissue procurement.

Step 2: If you are at home or outside of the hospital at the time of death, you will only need to call us directly or have your hospice worker call us to notify us of the death. We will coordinate the logistics of the donation from there. If you are at Lurie Children’s at the time of death, no action needs to be taken on your part (the process will be automatically started). These two steps ensure that the autopsy tissue donation is done in a way that is respectful to your child’s body and will not impact funeral or memorial plans.

What is the cost of autopsy tissue donation?

Because the gift of autopsy tissue donation is so great, there is no charge to your family for the donation. Everything will be covered.

How can I learn more about the research or medical advances being done with the donated tissue?

For more information about your child’s contribution to research, please contact:

Melissa Williams
Tissue Navigator/Gift From A Child Program
Hematology, Oncology, Neuro-Oncology and Stem Cell Transplant
Business hours: 312.227.3893
After hours: 312.227.4090
mjwilliams@luriechildrens.org

Additional Questions?

Please feel free to reach out with any questions you have about this process. We are here to support you and help you navigate this process.