Hic locus est ubi mors gaudet succurrere vitae.
This Latin proverb is a common motto for morgues and other facilities that perform autopsies and study anatomic pathology. In English, it translates to, “This is the place where death delights to help the living.”
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, and his doctor couldn’t provide information or resources to that end. As a result, my husband wasn’t able to realize his wish to make this invaluable donation.
If you or someone you love is interested in brain donation after death, be sure to decide and plan for this well in advance.
Why Brain Donations Are So Important
Compared to what scientists know about our other organs, the brain remains a relative mystery. The limited number of post-mortem brains available for research means we still have little understanding of the brain’s cells, wiring and mechanisms for complex processes like memory, movement and emotion.
There are hundreds of neurological disorders that can affect humans, but public awareness of and scientific interest in Alzheimer’s disease (AD) and Parkinson’s disease (PD) have grown significantly in recent years. An estimated 6.2 million and 1 million Americans are living with AD and PD respectively, and these numbers are projected to continue increasing.
The growing prevalence of these and other debilitating diseases has created a critical need for brain donations. Scientists are not just seeking donations from individuals with neurological or psychiatric conditions, though. Brains from healthy individuals, or “controls,” are extremely important. Control tissue samples allow researchers to make useful comparisons to brain tissue from patients affected by these disorders.
Numerous disease- and disorder-focused research programs rely on brain donations for their investigations and studies. In addition to AD and PD, lines of study include autism spectrum disorder, other types of dementia, depression, schizophrenia, multiple sclerosis, epilepsy, traumatic brain injury (TBI) and chronic traumatic encephalopathy (CTE).
Factors in Deciding to Become a Brain Donor
Some people have no problem talking about or planning for death. Others, however, experience a certain degree of discomfort when faced with discussions about dying and end-of-life decisions. Numerous studies have examined the factors that guide people’s choices regarding organ donation, brain donation and even whole-body donation. Fear and anxiety, family opinions, religious and cultural beliefs, body wholeness, and dignity are highly influential factors for potential donors.
Due to its association with consciousness and identity, people tend to be more hesitant about brain donation compared to donating other parts of the body, whether for transplantation or research purposes. 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. Altruistic desires to help others, prevent suffering and support scientific research are the most popular reasons individuals decide to become brain donors.
How Are Donations Used?
Understandably, potential donors want a clear idea of what the brain donation process entails and how their gift will be used before consenting. Some people may find the details morbid to consider, but knowing exactly how brain donation works can also offer reassurance.
Upon receipt of a body, 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 associated 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.
However, the family may be able to request a summary of the neuropathology report to confirm the donor’s diagnosis (if any). According to The Brain Donor Project, this report is typically available several months after the donation and often provides some definitive answers for relatives of the donor that may not have been obtainable otherwise.
Brain banks make it possible for researchers with a particular interest, such as frontotemporal dementia (FTD), 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.
Talking to Family Members About Brain Donation
Once you have made the decision to become a donor, adequate planning is crucial to seeing it through. To ensure a donation is properly preserved and suitable for research, brain retrieval must be performed within 24 hours of a 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 in detail with family members. Better yet, they should be put in writing and stored with other essential documents like wills, advance directives, information on prepaid funeral arrangements, VA forms for burial, etc. Including wishes for brain donation and all relevant contact information will help guide family members through the process.
Having these discussions well in advance also gives donors the opportunity to explain how brain donation works and their reasons for making such an important gift. Talking through this decision will help dispel myths and address concerns that often surround organ donation. Getting everyone on the same page is very important because a donor’s legal next of kin/legal representative (e.g. agent named in a medical power of attorney or health care proxy) must sign a consent form at the time of death to authorize the donation.
How Does Brain Donation Affect Funeral Arrangements?
Another advantage of adequate preplanning and preregistration is that the brain bank can work closely with families and funeral homes to ensure that donation does not interfere with the donor’s funeral arrangements.
Brain banks assume all financial responsibility for transportation of the donor from the location of death to a local facility where a designated specialist will remove the brain. An open casket viewing is still an option, as the removal process does not cause disfigurement.
After retrieval is complete, the donor’s body is released to the family and they can proceed with carrying out final arrangements. The family is responsible for covering return transportation of the deceased (if any) and all other funeral expenses.
How to Register as a Brain Donor
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 preregister donors. Most of these banks are affiliated with medical research programs at renowned educational institutions, such as Harvard University and the University of Miami, and they work with other schools and organizations to distribute necessary tissue samples for their research. Preregistration may be required for some of these programs to ensure 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 on your driver’s license does not give a brain bank permission to receive a donation. Furthermore, 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. Whole body donation to a medical school may still be possible after a brain donation as well.
Many donors and their surviving families 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 support the advancement of medicine and improve the lives of future patients!
For more information on donation and preregistration, visit the The Brain Donor Project website.
Sources: Knight's Forensic Pathology (3rd Edition); Prevalence of Parkinson’s disease across North America (https://doi.org/10.1038/s41531-018-0058-0); 2021 Alzheimer’s Association Facts & Figures Report (https://www.alz.org/media/Documents/alzheimers-facts-and-figures.pdf); Factors influencing decisions about donation of the brain for research purposes (https://doi.org/10.1093/ageing/27.5.623); What factors influence people’s decisions to register for organ donation? The results of a nominal group study (https://doi.org/10.1111/tri.12307); Religion and Organ Donation (https://www.organdonor.gov/about/donors/religion.html); Brain Donation FAQ (https://braindonorproject.org/faq/)