Approach

Donor Family Coordinator for Organs – our role in the donation process 

How to introduce Donor Alliance/Donor Family Coordinator to families: 

• Goal of care coordinator – use in general, with difficult family dynamics, when EOL decisions need to be confirmed, for information sessions 

• End of life coordinator – use when end of life decisions are confirmed/BDT is confirmed and family understands what test means 

• Donor Alliance – try to avoid if possible; can use when topic of donation has already been brought up in some capacity 

• Why not just introduce as coordinator from Donor Alliance? 

• Removing donation from the introduction takes the pressure off hospital staff to answer questions about donation on the spot 

• Separates hospital from Donor Alliance – ensures relationship with hospital and patient’s family stays in-tact regardless of feelings about donation 

• Reassures families that patient care will not change because of donation since patient remains in the care of the hospital until time of death 

• Leaves space for Donor Alliance staff to gauge if family is ready to hear about donation – some families may not be as ready as they seem 

Key Components of Meeting with the family: 

• Build relationships and ensure needs are met 

• We care about these families outside of donation and want to make sure that they are supported during this challenging time.  

• Build relationships – asking questions about the patient and their loved ones, allowing them space to reflect about the experience and who the patient is as a person 

• Ensure their needs are met – food/water? Breaks? Sleep? All these things are hard to remember when grieving but are so important to being in a clear headspace 

• Confirm Understanding of Prognosis  

• What do they understand about the patient’s condition? 

• Are they understanding that there is no meaningful chance for survival or do they think there is still a chance for recovery? 

• Based on understanding we will assess the appropriateness of the conversation 

• Bringing up donation too early can be upsetting for the family and create mistrust 

• We consider things such as time constraints for WLST, language barriers, grief, religious beliefs, trust, etc. 

• Is it appropriate to have hospital staff re-explain the patient’s condition to help ensure understanding? Can we give time/space for processing? How can we best support the family with this? 

• Confirm that End-of-Life decisions have been discussed/made 

• We can offer information conversations when end-of-life decisions are not planned but being discussed 

• This helps family members understand and be prepared for how organ donation can/will play a part in end-of-life decisions should they be made. 

• It gives families time to process the information and understand how organ donation could affect the transition to comfort care 

• Topic of Donation: 

• Registered 

• We will inquire if family is aware their loved one made the incredible lifesaving decision to register as an organ/tissue/eye/research donor, and provide the registry and its disclosures 

• Support through this decision – normalize that they may not have known/talked about it, allow for space to process how the decision makes them feel. 

• We are there to honor the decision of their loved one and support them through that decision. 

• If opposed – how else can we support them? What are their reservations? Is there any misconceptions or misunderstanding regarding organ/tissue donation? 

• Regardless of the family’s opinions of their loved one’s decision we will support them as we would any family.  

• Not registered 

• We provide the opportunity for families to honor their loved one through the rare and powerful gift of organ donation. 

• Authorization paperwork 

• Provide information about the process including timelines, clinical assessment, allocation of gifts, OR/transport (all tissue donors are transported to the Donor Alliance Recovery Center), no cost to family in regards to donation process, working with funeral homes and coroner offices etc. 

Starting the donation process: 

• DRAI – Donor Risk Assessment Interview 

• Medical social questionnaire similar to when someone gives blood, ensures safety for the recipients. 

• Memory making 

• Provide heartbeats in a bottle (EKG strip), fingerprints, a donor quilt made by our donor/recipient families, and a donor packet with information about our Aftercare team and further memory making 

• Support family 

• Continue to check in with families as much or as little as they need to feel supported throughout the process 

• Some families need consistent in-person support, some prefer less interaction, however it is all based on the family’s needs 

• If the donor is transferred to the Donor Alliance Recovery Center, we will continue to provide updates and support families via phone.  

• Provide timely updates and outcomes  

• Be with families for Honor Walks (hospital discretion)  

• Donation After Circulatory Death (DCD) Support 

• Some families elect to be with their loved one as they pass in the OR prior to the recovery surgery. 

• We will explain/prepare them for this moment and provide constant support for these families. 

• All instruments and tables are covered, the patient will be prepped and draped but the patient’s head and arm will be left out to allow the family to be there physically for their loved one.  

• The lights are dimmed, and all non-pertinent staff will be asked to leave to allow for privacy for the family. 

• The family can choose to play music during this time.  

• They can remain in the OR until TOD at which time we will escort them out of the room prior to the recovery surgery beginning.  

Aftercare: 

• Provide final outcome to family via a phone call after recovery is complete. 

• An outcome letter is  6-8 weeks after recovery containing information about the recipients whose lives were saved 

• Link to Aftercare page