Important role of assisted living facilities in brain donation
Thank you for all you do to make the time leading up to the end-of-life easier and more manageable for your residents and their families.
Brain Support Network prepares detailed arrangements for families who wish to donate their loved one’s brain to the Mayo Clinic in Jacksonville, Florida.
In order for the brain donation to be successful, it is important that all of the following steps are followed. It is important for assisted living facility staff to review these steps prior to the donor’s end-of-life.
It is critical that all staff members who may be fulfilling the requirements of this protocol have access to this information beforehand. We recommend that assisted living facilities print out these steps and place them in the intended donor’s file. We also recommend that a copy of these steps be placed in the intended donor’s apartment for reference at the end-of-life.
How can assisted living facility personnel best assist a donor family?
The following sections contain information that should be added to the intended donor’s file at the assisted living facility. However, we encourage your facility staff to make these instructions resident-specific.
When you receive the specific detailed instructions for the donor’s family from Brain Support Network, a good idea may be to use these instructions to draft a plan in your own words and incorporate it into your system in such a way that makes sense for your process to ensure that all the needed steps are followed. Please reach out to Brain Support Network if you have any questions.
Role of assisted living facility staff when death appears to be within 24-72 hours
In order to ensure a successful brain donation, a few steps are required about 24-72 hours before the end-of-life:
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If ice and Ziploc-style bags are readily accessible at the facility, this step can be skipped. Otherwise, prepare several gallon-size resealable Ziploc-style bags according to our instructions. See the icing protocol here.
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Alert the resident’s family and the hospice agency if the intended donor has experienced a change in condition, particularly if the resident has suffered a sudden decline and hospice staff have not yet increased the frequency of their visits accordingly.
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Alert Brain Support Network by phone call, text message, or email. (Call or text 650-814-0848 cell, email braindonation@
brainsupportnetwork.org.) Indicate that death has not yet occurred, but that the intended donor has experienced a decline and death is expected within a certain amount of time (for example, “hours to days”). If you are not able to include patient information in a text or email, please leave all the other details we need without the patient’s name. (We can figure out the donor’s name.) -
Now is a good time to review the detailed brain donation instructions from Brain Support Network and review the instructions to ensure that all steps are understood. Please call 650-814-0848 with any questions about how to implement these instructions.
Role of assisted living facility staff after donor expires
Note: For the purpose of clarity within this document, the term ‘mortuary’ shall denote the possibility of a mortuary, a funeral home, or a cremation organization. Some of our donor families also wish to work with a body donation organization. Occasionally, when a family’s mortuary is not cooperative with brain donation, a separate transportation provider and/or a location of procurement may also be used to facilitate the brain donation.
There are a few steps needed after death.
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For guidelines about applying ice, read the icing protocol here.
brainsupportnetwork.org/ice -
Call hospice, if hospice staff are not already present.
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Ensure that ice is replenished before the donor leaves for the mortuary or location of brain recovery.
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Ensure that the family’s prepared envelopes are given to the mortuary representative.
Thank you for your help to ensure the success of this brain donation.