Brain Donation Requirements and Process

hands2Thank  you for considering brain donation! Advance planning offers the best chances for a successful brain donation. Brain banks require that brains are procured within hours of the donor’s death. A few require a 4- or 8-hour post-mortem interval. The maximum delay is 24 hours following death. There are no exceptions. This requirement makes it very difficult to organize a brain donation after the donor has passed away.

Brain donations are accomplished with the cooperation of up to seven parties:

  1. Donor’s Family, Next of Kin, or Healthcare Proxy
  2. Pathology Specialist
  3. Funeral Home or Cremation Organization
  4. Hospice Agency, if applicable
  5. Care Facility, if applicable
  6. Brain Bank
  7. Brain Support Network (BSN)

Donor’s Family, Next of Kin, or Healthcare Proxy

States vary as to who can give consent. In some states, the person who gives consent for a brain donation must be the healthcare proxy/agent (power-of-attorney), as identified in a legal document. In other states, the next of kin can give consent. The next-of-kin is often a member of the donor’s immediate family, such as a spouse, eldest child, sibling, or designated guardian. The donor’s consent is desired by some brain banks but is generally not required.help

The family pays the cost of the brain donation at the time the brain donation work is performed.  In California, the average cost to families to accomplish brain donation is about $1,000. The average cost to families in other parts of the US is about $800. These are fees paid directly to the pathology specialist and funeral home (or cremation organization). For a few disorders (PSP, CBD, MSA), a grant of up to $750 is available to families from affiliated non-profit organizations, upon submission of receipts. For some disorders (PD, LBD, FTD, Pick’s, PPA), a grant is available to families with a financial need.  See our FAQ for more about costs.

The person who gives consent must also request the donor’s (or intended donor’s) records from neurologists, psychiatrists, neuro-psychologists and other specialists for the brain bank. In addition to medical records from specialists, the brain bank is interested in the family’s description of neurological symptoms and a timeline of these symptoms. See our FAQ for more about the family’s role.

 


Pathology Specialist

The pathology specialist (pathologist’s assistant, pathology technician, autopsy technician, or diener) performs the actual brain procurement.  Sometimes, a pathologist (a specialized medical doctor) might perform the brain procurement.  Generally, the cost of an MD’s services are higher than those of pathology specialists.

docThe 24-hour window during which the brain procurement must be completed is strictly enforced by the brain banks. Brain Support Network (BSN) locates a pathology specialist, ideally available 24×7 (24 hours a day, seven days a week). At minimum, a pathology specialist must be available on a daily basis. If needed, BSN locates a back-up pathology specialist.

The specialist procures the entire brain. Depending on the research protocol, the brain may be separated into left and right halves, or may remain whole. If separated, one half is frozen in dry ice or a special freezer; one half is “fixed” (i.e. immersed) in formalin. Brain procurement does not impact open casket funerals.

The specialist sends the brain to the brain bank in special containers sent by the brain bank to the specialist. Specialists are paid directly by the family (or the estate). See our FAQ for more on the pathology specialist’s role.

 


Funeral Home or Cremation Organization

The funeral home or cremation organization generally provides the location at which the brain is procured by the pathology specialist. Ideally, the funeral home is available 24×7 (24 hours a day, seven days a week).  At minimum, the funeral home must be available during a multi-hour window (eg, 8am to 5pm) on a daily basis, even holidays. Sometimes the funeral home charges a fee; often, it charges no fee. We would consider $150 to $300 to be a reasonable fee, especially for after-hours use (evenings, weekends, or holidays).

Infrequently, a funeral home does not give a pathology specialist access to its facility. In this case, the donor must be transported to another facility for the brain procurement, and then returned to the funeral home. The family (or the estate) pays the funeral home directly for facility use or transportation. See our FAQ for more on the funeral home’s role.

 


Hospice Agency

nurseIf a hospice agency is involved, either the hospice nurse or social worker alerts Brain Support Network, the pathology specialist, and the funeral home (or cremation organization) when death is imminent. When death occurs, the hospice nurse alerts these same three parties. When the funeral home arrives to transport the donor, the hospice nurse or social worker provides the brain donation paperwork (usually in two envelopes) to the funeral home representative. See our FAQ for more on the hospice agency’s role.

 


Care Facility

If the intended donor lives in a care facility, a nurse or social worker alerts Brain Support Network, the pathology specialist, and the funeral home (or cremation organization) when death is imminent. When death occurs, the care facility nurse alerts these same three parties. When the funeral home arrives to transport the donor, the facility staff provides the brain donation paperwork (usually in two envelopes) to the funeral home representative. See our FAQ for more on the care facility’s role.

 


Brain Bank

bankThe only way to obtain a confirmed diagnosis is through post-mortem tissue examination. The brain bank provides shipping containers for the tissue and performs a microscopic analysis of the brain tissue. The brain bank attempts to correlate what is seen in the neurological records and in the written family report of symptoms with the pathology found in the tissue. A neuropathologist prepares the neuropathology report (i.e. brain autopsy report) containing the diagnosis confirmed by tissue analysis and sends this report to the family. Brain banks do not charge an autopsy fee.

Brain banks store tissue for future research.  Frozen brain tissue is used for DNA studies. Brain banks are most often affiliated with universities or other research institutions as they have the deep-pockets to store tissue in perpetuity.

See our FAQ for more on how Brain Support Network selects the best brain bank to receive the brain donation. Of the 350 families we have helped, most brains have been donated to the Mayo Clinic brain bank in Jacksonville, Florida. Some have been donated to the Mayo Clinic brain bank in Rochester, Minnesota.

 


Brain Support Network

Brain Support Network (BSN) has helped over 350 families in the US and Canada successfully accomplish brain donation. We are honored to assist your family, too.

Brain Support Network selects pathology specialists, confirms that the funeral home can share its prep room (or arranges for donor transportation), prepares detailed instructions for the family and other parties involved in the effort, troubleshoots the process if issues arise, and coordinates delivery of the diagnosis by the brain bank.

Brain Support Network maintains a roster of suitable pathology specialists across the United States and Canada. Many specialists perform multiple brain procurements in a single year. Specialists that do not perform as expected are removed from the roster.

In areas where we have assisted with multiple brain donations, BSN maintains a roster of cooperative funeral homes and cremation organizations. A “cooperative” funeral home is one that allows the brain donation work on its premises, on a 24×7 basis, and charges no fee (or a reasonable fee).

cropped-brain.pngBrain Support Network is an independent non-profit, not affiliated with pathology specialists, funeral homes, cremation organizations, hospice agencies, care facilities, or brain banks. BSN manages a staff of employees and volunteers that coordinate brain donations. BSN depends on charitable contributions to defray the costs of the services that it provides. Please donate now to support our work!