Brain Support Network assists families with brain donation arrangements. We have helped over 1000 families, and we are honored to assist yours.
In most of these cases, the brain was recovered at the funeral home. This webpage explains how a funeral home is involved in this important endeavor.
What do we mean by “funeral home”?
We use the term “funeral home” generally to mean a place where a person is taken upon his/her passing to be prepared for cremation, a viewing, embalming, burial, etc. Other terms used include mortuary, cremation organization, crematory, funeral services, and cemetery.
Must our family use a funeral home?
Yes, unless your family member is also donating his/her body. The funeral home generally plays a key role in the brain donation. Once the brain recovery is completed, the funeral home will continue with final arrangements for cremation, embalming, viewing, and/or burial.
What role does the funeral home play with brain donation?
The funeral home is the most convenient location for the brain recovery. Hopefully your family will select a funeral home that is cooperative. A “cooperative” funeral home or cremation organization meets two criteria:
- makes its facility available to pathology personnel on a daily basis. At minimum, a four-hour window each day is necessary.
- ideally, makes its facility available on a 24×7 basis.
- charges a reasonable fee, if any, and assesses that fee only if the facility is utilized after-hours.
- ideally, charges no fee to the family (or anyone else) for allowing pathology personnel to use its facilities.
The brain recovery must occur within 24 hours of a loved one’s passing. It is best if the intended donor is in refrigeration at the funeral home during this time. Surprisingly, not all funeral homes in the US have refrigeration on-site. Some can use refrigeration at partner funeral homes or at nearby medical facilities.
If the funeral home or cremation organization doesn’t allow for this work to occur on its premises, we generally recommend the family find one that is cooperative.
Sometimes the family has pre-paid for final arrangements with a funeral home that is not cooperative with brain donation on-site. In these cases, we try to locate a “third-party funeral home” that will allow the work to occur on-site for a facility-use fee (and perhaps transportation fee) paid by the family. This often adds another $300-$600 to the total costs for brain donation.
How much does the funeral home charge to accommodate the brain donation?
Approximately half the funeral homes we work with charge no fee for allowing a pathology specialist access to their facility for the brain recovery, whether this work is during normal business hours or after-hours.
Of those that do charge, often there’s only a fee if the brain recovery must take place outside of regular business hours so that the business can pay to have an employee open up the facility and supervise the pathology provider.
We consider an after-hours fee of $150 to $300 to be reasonable. If a funeral home charges a fee during its normal business hours, we would consider a fee of $150 to be reasonable.
If the funeral home is providing transportation to/from a morgue or medical facility where the brain recovery will occur, it is ideal if this is provided for free. Though transportation rates vary by US region, we consider a transportation fee of $150 to $300 to be reasonable, if the donor must be transported a 100 miles or so one-way.
Is an open casket service or viewing still possible after brain donation?
Yes, an open casket service or viewing is still possible. We prefer to know that this is the family’s wish in advance so we may request that the pathology provider and funeral home provide extra attention.
What’s the timing if I’m planning on embalming?
The brain recovery must occur before the embalming.
What if our family intends to donate our loved one’s body for research or science?
Typically a body donation organization utilizes the services of a funeral home or mortuary service provider to pick up the intended donor at the time of his/her passing and transport him/her initially to a holding facility (which could be a funeral home) before transport to the body donation organization. The brain donation work can be accomplished at the holding facility (which may or may not be a funeral home).
When is the funeral home not used as the recovery location?
A funeral home may not be used as the recovery location if your family member is also doing a body donation. Another instance when the funeral home might not be used as the recovery location is if we cannot locate a pathology resource who will travel to the funeral home to do the work. In that case, the brain recovery will occur at a morgue or medical facility such that the funeral home is providing roundtrip transportation to/from that facility.
In these cases, occasionally two roundtrips are needed, depending on the availability of refrigeration at the funeral home, and on the proximity to the morgue or medical facility. We are then hoping that the funeral home or cremation organization charges a small fee for that transportation.
Why does my funeral home express concern that my family member has Creutzfeldt-Jakob Disease (CJD)?
Creutzfeldt-Jakob Disease (CJD), also known as “mad cow disease,” is transmissible through infected brain tissue. If CJD is suspected, very strict protocols for tissue handling must be followed by the funeral home, pathology specialist, and brain bank. We refer all suspected CJD cases to a specialized brain bank.
We seldom come across suspected CJD cases. It is a rare disorder. Those with CJD usually die within six months of diagnosis and within a year of first symptoms.
Does COVID-19 change any of this?
If a funeral home accommodates brain donation, this is generally true whether the intended donor has tested positive for COVID-19 or not. We have experienced one case where either the funeral home charged the family a higher facility-use fee (for the extra cleaning required) if the intended donor is COVID-19 positive. And we have experienced one case where the funeral home arranged for the brain donation work to happen at a different location if the intended donor is COVID-19 positive.
If you are a family or funeral home with questions about this, please contact Brain Support Network via email or phone 650-814-0848.
For general information about brain donation, see our webpage.