Answers to Frequently Asked Questions
At what point after the diagnosis should the decision be made to pursue brain donation?
Once a family has decided to move forward, it is important to set up a brain donation as far in advance as possible. Plans can be made months or even several years before someone is in more advanced stages of disease or approaching end of life. Sometimes, a family will choose brain donation as the person is in the final stages of the disease process when death is imminent, and this time frame can cause stress and logistical complications during an already emotional time. There are several reasons why it is best to plan brain donation as early as possible:
• It is ideal if the person with the neurodegenerative disorder is involved in the decision to donate their brain. Because of possible changes to cognition and speech, this can be more challenging as the disease progresses. Therefore, we recommend discussing brain donation with your partner or other family members to let them know of your interest and to participate in the decision and the process.
• An essential part of the donation process is identifying a person or agency to perform the procedure to collect the brain tissue, referred to as the“ brain tissue procurement,” and shipment of the brain tissue to the brain bank. The neuropathology program coordinator at the Mayo Clinic Brain Bank can provide you with options for pathologists they have worked with in the past, but it is still important to confirm that the person is able and willing to do the procedure and to talk through the process, preparation, and possible cost ahead of time.
• There are several other steps to setting up a brain donation, including sending paperwork to the brain bank beforehand and arranging transportation and other services after the brain donation is complete( e. g., body donation, cremation, funeral service).
3
• Medical records are essential in interpreting brain findings by the brain bank neuropathologist. Therefore, as early as possible, the medical records release form( page 12) should be sent to the physicians who have evaluated the patient. This could include a neurologist, psychologist, or radiologist. Either hard copies or digital copies of the records are acceptable and should be sent to the brain bank.
• When someone passes away, there is a short time frame in which the brain tissue needs to be removed. Ideally, this time frame is 12 – 24 hours, but up to 48 hours is acceptable if a body has been kept in cold storage. This process takes coordination between the family, hospice( if hospice is involved), the mortuary service, and the pathologist and can be more complicated if someone passes away in the middle of the night or over a weekend or holiday.
These steps can take time and can bring up a number of questions; however, once they have been completed, patients and families have the peace of mind that the process is in place. The prearrangements are not legally binding, and the family can always change their mind at any point and for any reason. The family can then focus their time and energy on care, emotional health, relationships, and other needs. For these reasons, it is important to talk about, decide on, and set up brain donation early.