Important Role of Hospice, Skilled Nursing Facilities, and Hospitals in Brain Donation

Thank you for all you do to make the time leading up to end-of-life easier and more manageable for your patients and their families.  The following general information is provided to prepare your hospice agency, skilled nursing facility, or hospital for the important role you play in helping your patient and their family succeed with brain donation.

Brain Support Network organizes detailed arrangements for families to donate their loved one’s brain.

Sometimes families are early in the planning stages or Brain Support Network has been called when end-of-life is imminent; in these cases, Brain Support Network shares this webpage with families, nursing staff, or social workers so that care staff have a general idea of what is expected.

Nursing and social work staff who may be fulfilling the requirements below should have access to and review this protocol prior to the intended donor’s end-of-life.  We recommend that hospice agencies, directors of nursing at skilled nursing facilities, or hospital nursing staff print out these instructions and place them in the intended donor’s medical records.  Or copy them to the intended donor’s digital file.  This way if there is a change in personnel, there can be some institutional knowledge of these important steps.

MOST IMPORTANT!  Brain Support Network should be alerted when end-of-life is imminent (within 72 hours) and when end-of-life has occurred!  When Brain Support Network staff are not notified of a donor’s passing, it places the brain donation itself at risk.

In over 1000 brain donations, perhaps 10% of hospice agencies have failed to execute the steps needed to ensure a successful brain donation.  Specifically, staff doesn’t make all of the required notifications because they believe someone else is making the notifications.  Even if hospice staff are aware that family members are making notifications, hospice staff must make the notifications as well. 

Role of hospice, SNF, or hospital staff when end-of-life appears to be within 24-72 hours

In order to ensure a successful brain donation, three extra steps are required about 24-72 hours before the end-of-life:

1. Ensure that ice is ready (in gallon-size resealable Ziploc-style bags) or readily accessible at the end-of-life.  See the icing protocol here.

2. Alert the pathology resource by telephone, text message, or both.  Indicate that death has not yet occurred, but is expected within a certain amount of time (for example, “hours to days”).  (If you do not know the pathology resource, contact Brain Support Network for our detailed instructions, specific to this intended donor.)

3. Alert Brain Support Network by phone call, text message, or email.  (Call or text 650-814-0848 cell, email braindonation@brainsupportnetwork.org).  This alert can be given, regardless of the day/time.  Indicate that death has not yet occurred, but 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.)

Role of hospice, SNF, or hospital staff after donor expires

In addition to the standard procedures you follow at the time of death, we ask you to follow these additional steps at the TOD:

1. Pronounce, as you normally would.

2. Ensure that ice is placed around the head of the intended donor.  See the icing protocol here.

3. Notify the mortuary*, as you normally would.  (If you do not know the mortuary*, contact Brain Support Network for our detailed instructions, specific to this intended donor.)  Say, ”(Name of Donor) has passed away and needs to be picked up soon as a brain donation will occur.”  Request the name and cell phone number of the mortuary* representative.

4. Notify the pathology resource.  (If you do not know the pathology resource, contact Brain Support Network for our detailed instructions, specific to this intended donor.)  Please communicate the following:

• • unofficial time of death (as reported by family or caregivers),
  • official time of death (as pronounced by nursing staff),
  • whether head icing has begun,
  • whether the donor is presumed negative or positive for COVID,
  • time the mortuary* is expected to pick up donor, and
  • name and cell phone number of the mortuary representative.

5. Notify Brain Support Network.  Please communicate the following:

• • unofficial time of death (as reported by family or caregivers),
  • official time of death (as pronounced by nursing staff),
  • time head icing began,
  • whether the donor is presumed negative or positive for COVID,
  • whether donor has been picked up or the timing for that, and
  • whether all other notifications (mortuary* and pathology resource) have been made.

6. Ensure that ice is replenished before the donor leaves for the mortuary* or brain recovery location.

7. Ensure that the family’s prepared envelopes are given to the mortuary* representative.

* Note:  the term “mortuary” includes a funeral home, a cremation organization, or a body donation organization in the case of joint brain/body donation. Occasionally, when a family’s mortuary is not cooperative with brain donation, a third-party may need to be notified.

Thank you for your help to ensure the success of this brain donation.

 

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