By Sandy Morris
The Latin phrase, “Hic locus est ubi mors gaudet succurrere vitae,” is a common motto for morgues and other facilities that perform autopsies and study anatomic pathology. In English, this phrase translates to, "This is the place where death rejoices to help those who live."
My late husband was interested in donating his body to science so he could contribute to research that would prevent others from suffering as he did. Unfortunately, we had not done our research before he suddenly went into hospice care. Furthermore, his doctor was unable to provide information or resources to that end. As a result, he was unable to realize his wish to make this valuable donation. If you are interested in making this contribution to medical science, be sure to decide and plan in advance.
Brain donations fuel research and new treatments.
Compared to what scientists know about our other organs, brains remain a relative mystery. The limited number of posthumous brains available for research means we still have little understanding of the brain’s cells, wiring and mechanisms for things such as memory and emotions. This creates a critical need for donated brains from both healthy people and from those who are affected by neurological diseases. The rising number of individuals who are suffering from incurable diseases such as Alzheimer’s and Parkinson’s further highlights the importance of brain donations for research purposes.
Scientists are not just seeking donations from individuals with neurological diseases, though. Brain tissue from healthy, non-affected individuals, or “controls,” enables researchers to make meaningful and informative comparisons to brain tissue from patients with these disorders.
Numerous disease- and disorder-focused research programs rely on donated brains for their investigations and studies. These lines of study include autism spectrum disorder, Alzheimer’s and other forms of dementia, depression, schizophrenia, Parkinson’s disease, multiple sclerosis, epilepsy, traumatic brain injury, and chronic traumatic encephalopathy (CTE).
Have you considered brain donation?
Due to its association with our consciousness and identity, people tend to be uncomfortable with the thought of donating their brain. It is somewhat unnerving for humans to contemplate their own death, but it is important to use this discomfort to empathize with individuals who are suffering from incurable diseases and literally face to face with their own mortality.
In addition to the psychological implications of making this decision, many people are concerned that donation may conflict with their religious views. According to the U.S. Department of Health and Human Services, Division of Transplantation (DoT), many faiths have issued support for this act of charity and selflessness. However, the DoT stresses that, “each decision to become a donor is a personal one.” It is important for individuals to at least consider making this generous donation to science for the betterment of human lives.
Plan ahead and inform family members of your wishes.
Once you have made your decision to become a donor, adequate planning is crucial to seeing it through. In order to ensure brain tissue is properly preserved and suitable for research, donation autopsies must be performed within 24 hours from the time of donor’s death. Not only does the preplanning process better guarantee a successful donation will be made, it can also make final arrangements easier and less stressful for family members.
Regardless of a person’s preferences, end of life requests must be shared and discussed with family members. Better yet, they should be put in writing and stored with other essential documents such as wills, information on prepaid funeral arrangements, VA forms for burial, etc. Including wishes for brain donation and all relevant contact information will help family members to see this request through.
How do you register?
According to the National Institutes of Health NeuroBioBank, any competent person over the age of 18 can register as a potential brain donor. Parents or legal guardians may register a person under the age of 18 or an incompetent adult as well. In the event that a decedent has not preregistered, a consent form may be signed by the next of kin immediately following death.
Many brain banks around the country pre-register donors. Most of these banks are affiliated with medical research programs at renowned educational institutions such as Harvard University and University of Miami, and they work with other schools and organizations to distribute necessary tissue samples for their research. For some research programs, preregistraion may be required to make sure donors meet criteria for specific studies.
Also, it is worth noting that organ donation and brain donation are not the same thing. The “organ donor" designation or sticker on your driver’s license does not give a brain bank permission to receive a donation. Keep in mind that, just because you opt to donate your brain, doesn’t necessarily mean you cannot contribute other organs and tissues to transplant recipients and research efforts.
What happens to your donation?
Upon receipt of the body, an autopsy is performed on the donated brain by a designated pathologist to confirm clinical diagnosis. The whole brain is usually removed and prepared for analysis and future research.
Donated brain tissue is then sent to a central repository known as a brain bank. These banks share samples and attendant demographic and clinical information with qualified researchers worldwide. The samples are strictly anonymous and no information is associated with the donor’s name. This anonymity means the family is not notified of the results of any related scientific research.
These centralized resources make it possible for researchers with a particular interest, such as frontotemporal dementia, to request tissue from a brain bank for their unique investigations. Best of all, the donation of a single brain can provide tissue samples for hundreds of studies.
How do you organize final arrangements?
Brain banks assume all financial responsibility for one-way transportation of the deceased donor from the location of death to the designated pathologist, as well as the cost incurred for brain removal. The individual or their family is responsible for covering return transportation of the deceased from the pathologist and all other funeral expenses.
Another advantage of adequate pre-planning is that the brain bank can work closely with families and funeral homes to ensure that donation does not interfere with the decedent’s funeral arrangements. An open casket viewing is still an option, as the brain autopsy and removal process does not cause disfigurement.
Many donors and their survivors obtain a great deal of satisfaction knowing that their donation will contribute to the health and well-being of others. What a great legacy to be able to improve the lives of future patients!
For more information on donation and pregregistration, contact one of the national brain banks. You can also contact a medical school in your area to inquire about eligibility and registration processes for whole body donation after a brain donation.