Steps to be taken at the time of Death

1. Immediately after death, the participant’s head should be placed on ice. This can be done by placing a gallon size freezer bag filled with ice under the head like a pillow. Transport body to cold storage as soon as possible if available. Cold storage is often available at hospitals, funeral homes, or morgues.
2. The legally authorized representative or care facility will notify the Coordinator of death by calling 919.660.6376 and leaving a message with the participant’s name, date of birth, date and time of death, and current location. Provide phone numbers and/or email addresses for return contact.
   • During business hours, you will receive a call back promptly.
   • If death occurs outside of business hours, the body should be placed in cold storage by the care facility, funeral home, or morgue as soon as possible. The Coordinator will return your call early on the next business day to arrange next steps.

Next Steps for Brain Only Autopsy

1. After a participant passes away, their legally authorized representative needs to give verbal consent for an autopsy to Duke Decedent Care Office (DDCO) staff as required by North Carolina state law. DDCO will reach out to the project partner soon after death to complete this authorization process over the phone. The legal representatives who can give consent, ranked by priority, are: the person with legal healthcare power of attorney or healthcare agent, then the spouse, parents or adult children, and finally adult siblings. Once verbal consent is completed with the DDCO, the Coordinator will arrange for the participant’s body to be transported to Duke Hospital at no cost to the family. See Information on Costs below.
2. The brain-only autopsy is performed at Duke Hospital. Please note that it may take up to 24 hours to complete from the time the participant’s body arrives at Duke, and there could be delays during holidays.
3. After brain-only autopsy is complete, the body is transported back to the chosen funeral home or crematorium. DDCO staff at Duke Hospital will coordinate this transportation.
4. Autopsy results will be sent to the participant’s legal representative by the Coordinator within about three months.

Reminder

Please update the Coordinator with any changes in health status or memory function of the participant. We also appreciate updates on changes in address, phone number, or physical location of participants. Participants are often in our program for many years. It is very helpful for the program to be notified if a participant’s death is expected in coming days or weeks.