GIFT OF HOPECategory:
"GIFT OF HOPE"
By Human Brain and Spinal Fluid Resource Center
NIH Brain and Tissue Repository – California
Helping Scientists Help Patients
Note from Jo Rosen: My mother was diagnosed with Parkinson’s in 1984. Upon her death in 1992, through the Gift of Hope, our family donated her brain tissue to research. In the process, we received a neuropathological autopsy. The autopsy concluded that mother did NOT have Parkinson’s, she had Progressive Supranuclear Palsy. In another article, I’ll tell you why it’s important to know your diagnosis.
What is the Purpose of a Brain Donation? Brain donation is a valuable gift. One brain provides a basis for studies by numerous researchers throughout the United States as well as other countries. “Animal models” of human mental illness and many neurological disorders simply do not exist. Even with improved clinical research methods such as genetic linkage studies or PET and CAT scans, MRI (NMR) and other imaging techniques, our understanding of the biochemistry and pathology of the brain is best achieved through the use of postmortem human brain tissue.
Who Can Donate? Any legally competent adult can request to donate their brain to be used for research after their death, just as they can request to donate any other organ. Those who may be incompetent, or otherwise unable to sign, may provisionally donate through their guardian. However, it is the responsibility of the next of kin/guardian to authorize tissue to be removed for research at the time of death.
Are There Any Restrictions? Use of a respirator to aid in breathing may be allowed, but we wish to know this at the time of death. A decision will be made on a case by case basis. As heart, kidney, and liver donors must necessarily be on a respirator at death, we regret that persons wishing to donate those organs cannot donate a brain to our Center. We cannot accept donations from highly contagious or neurological transmissible diseases (i.e., tuberculosis, any hepatitis, Jacob-Creutzfeldt disease).
What About a Body Donation VERSUS A Donation of Brain and Other Organs? Most medical schools do not accept body donations from persons who have donated any type of tissue. One usually must make a choice between donating their organ(s) versus donating one’s entire body to a medical school. Please check with your local medical school for their policy. For donors who also wish to donate corneas, skin, bone when donating one’s brain to this Center, please check with your local hospital’s transplant office for their policy.
What Happens When The Donor Dies And What Procedures Must Be Followed at the Time of Death?
- At the time of death, from anywhere within the United States, the next of kin or a member of the donor’s medical care team should call the Donor Coordinator, during office hours at (310) 268-3536, or the 24-hour pager (310) 636-5199, after hours. In the unlikely event, you do not receive a response when paging, please call the VA switchboard at (310) 478-3711. They will provide additional phone numbers to reach us.
- An after death telephonic informed consent from the Next of Kin must be obtained BEFORE any tissue may be removed even if the donor is registered in our Gift of Hope Program.
- It is also important to have the tissue removed as quickly as possible, before embalming or other funeral preparations. We prefer to obtain specimens for research within 6-12 hours after death, but special circumstances may cause this window of time to be extended. REMINDER: the next of kin must be available immediately after death in order to provide the telephonic consent for removal of tissues for research.
- It is important that our Donor Coordinator speaks with the person removing the tissue to ensure that our research protocol is followed. It is also important that the Donor Coordinator speaks with the funeral home/ mortuary personnel to coordinate this donation.
- We will arrange for the tissue specimen to be sent to our Center.
- After the tissue is removed, the body is released to the family for the arranged funeral services.
Must the Donor Be Transported To Our Facility? No. The tissue is removed at a facility close to the place of the donor’s death. Only the brain and other authorized tissue are sent to our Center.
Who Is Responsible For Arranging For Tissue Removal? At the time of death, the Resource Center’s Donor Coordinator will contact a trained person who will remove the tissue for research purposes. Donor/family member may help us prior to death by contacting local hospitals in their area to obtain names of pathologists for the Donor Coordinator to contact.
At What Location Will The Tissue Be Removed? In our recent experience, the majority of donors are passing away in a home hospice program or a nursing care facility. Therefore, the limited tissue removal will be carried out at the funeral home/mortuary the family has chosen.
Even if the donor dies in a hospital, the tissue removal may still take place in the funeral home/mortuary as some of the smaller hospitals do not have autopsy facilities. This situation is dealt with on an individual basis.
If the family has chosen a cremation service, it is possible that the crematorium may not have the facility to let us remove the tissue. This situation is dealt with on an individual basis.
What Does The Funeral Home/Mortuary Have To Know And Do? We suggest the issue of donating tissue for research be discussed by the donor/next of kin with the chosen mortuary at the time of the decision to use them. Once we are notified of a mortuary that the family has chosen, we will send them a letter to be placed in their files on how to contact us at the time of death so the donation can take place expeditiously.
What Happens To The Body In The Autopsy Suite/Mortuary? After the brain and other tissue have been removed, the body is released to the funeral director for whatever arrangements the family has made. An open casket or other traditional funeral arrangements are possible. The exact funeral and burial details, however, remain the responsibility of the donor’s survivors or estate.
Is There Any Cost? The Center pays for the tissue removal, transportation of specimen to us and if necessary use of facility where tissue is removed. Funeral arrangements and expenses remain the responsibility of the donor and family.
How Can the Donor’s Survivors Determine Who Is Next-Of-Kin? The hierarchy of legal relationships is fairly consistent from state to state. Generally, all legal guardianships, powers of attorney, and other court-appointed relationships end at death. The surviving legal next-of-kin is the first to fulfill one of the following requirements:
- Spouse (unless divorced or legally separated)
- Adult child (if more than one, all must agree)
- Sibling (if more than one, all must agree)
- Another relative (niece, nephew, grandchild, etc.)
- Executor or Administrator (if already appointed)
What Needs To Happen? When you enroll in our Gift of Hope program, we will request you to provide us with your medical history. This helps us maintain comprehensive information for later correlation with research studies conducted by scientists.
Next of kin is contacted by the Coordinator after the donor’s death to express condolences as well as gratitude for the donation. Even though the next of kin has given telephonically informed consent to remove tissue after death for research, we are required to obtain and keep on file an original signed informed consent. At this time, we also send authorization for release of donor’s medical records for their signature and return to us. As with all information, these records are kept strictly confidential.
How Do I Become A Donor? Simply let us know of your wish to become one by and we will send forms that need to be completed IN ADVANCE of death. Your consent to donate is only useful if your next of kin know of your desire to make this donation as they must be willing and available to give telephonic consent at the time of death. The donor should also discuss this with all family members, so there is no confusion of the desire to donate.
Please feel free to write, call, or email us Phone: (310) 268-3536; Fax (310) 268-4768; 24 hr pager (310) 389-5199; email: firstname.lastname@example.org about any other questions you may have.
REMINDER: Even if you are a registered donor in our Gift of Hope Program, your next of kin must be willing and available to give telephonically informed consent at the time of death to make this donation happen.