For Patient Care Teams

The consenting process for post-mortem donation will be similar no matter where the family lives or was treated. However, whether a child passes at home or in a medical setting will impact the steps taken during the donation process. The tissue navigator facilitates either scenario, the steps just differ. Navigators are trained to companion families and work closely with the child’s medical team throughout the donation process. They understand the close relationship your team has with your families and that relationship will continue.

• You as the referring hospital can keep/receive tissue/data from the donation to further your hospital’s research.
• If your hospital performs the partial autopsy, the navigator will ensure the pathology team has everything it needs – supplies (at no cost), tracking templates, protocols, support. Navigators will guide the team throughout the donation.
• Navigators communicate with the family and medical team where appropriate before, during and after the donation. When possible, they provide details on the donation and its impact.
• Navigators can serve as a resource to help a medical team speak to the family about post-mortem donation.
• Our program is open to all hospitals.
• Tissue navigators are masters at problem solving and quick action all while maintaining a compassionate presence as they guide families through the most unimaginable of situations. To meet two of our navigators and hear how they work as a team to enable donations anywhere in the country, watch this video. It will be 5 minutes well spent.

Clinicians guide families/patients throughout their treatment journey to facilitate informed decision making; if clinicians fail to educate families about the option to donate post-mortem, they are by default deciding this family won’t donate. In a journey where so much has been taken from families, families deserve the opportunity to make a thoughtful decision about this potentially life-giving choice.

This video showcases several approaches to asking a family to donate their child’s post-mortem tissue. These are your colleagues who have made asking part of their end-of-life care plan. They explain their philosophy and approach to aid you in developing a way to speak to families that feels right for you. A couple of pointers from the video:

• When is the best time to bring this up? You can bring up the subject of donation when the child is likely terminal. You could say, “We are at a point now where we’re thinking of end-of-life for your child. One of the things that is possible is tissue donation after a child passes away. Is this something you’ve ever thought about? Is this something you might be interested in?
• It’s also helpful to bring up the gift of tissue during Phase I clinical trials, or when a child has finished standard of care and is moving on to something else. You can bring this up as a next step, something for the family to think about. A good conversation starter is, “We’re considering this option for your child and the reason we’re able to have this option is because other families chose to donate tissue after their child passed away and we were able to come up with this as a possible treatment. Now your child is benefitting from this gift of tissue. This is something that could potentially be an option for you too.”
• Once a family says they are interested, you can follow up by giving them a copy of the consent form to look over. You can set up a time to review it together and sign it together. You can offer to let them talk to a tissue navigator to answer any questions you are not able or don’t feel comfortable answering. Tissue navigators are also very comfortable doing the consenting process, either alone with the family or together with you.

Donating Benefits Research and Families

Donating makes families feel there is some good that might come from their devastating loss. The chance to help the next child, the next family. When a child’s life ends too soon, donating tissue is a way for the child and family to take a final stand against cancer. Tissue donation is a contribution that improves outcomes for children with brain cancer that only families can make. They understand researchers need to study tissue at time of diagnosis, recurrence and after death to know why current treatments aren’t working.

• Donating Benefits Research and Families
• Donating makes families feel there is some good that might come from their devastating loss. The chance to help the next child, the next family. When a child’s life ends too soon, donating tissue is a way for the child and family to take a final stand against cancer. Tissue donation is a contribution that improves outcomes for children with brain cancer that only families can make. They understand researchers need to study tissue at time of diagnosis, recurrence and after death to know why current treatments aren’t working.