Blood, Organ, Tissue Donations
If you've lost a family member or friend, I am so sorry for your loss.
Thank you for considering helping others with a donation.
Organ, Blood & Tissue Donations
A donation of blood and tissue samples while still living or at the time of death may help further research and understanding of Lyme disease.
Below are suggestions of how to donate samples and where they may be sent for examination. There may be fees associated with the collection, shipping, storage and processing of the samples.
"...To further characterize the extent of involvement and damage by Borrelia burgdorferi in humans, brain, spinal cord, and other tissues from people who have had Lyme disease at some time in their life are collected for current and future investigation at the NYS Psychiatric Institute.
People with a history of well-documented Lyme disease, which must include a positive Lyme blood test, should contact us at lymecontact@columbia.edu
It is most important that your next of kin or other individual who will be responsible for arrangements after your death be made aware of your wishes, provided with the Columbia Lyme Center contact information, and be informed that they should contact us immediately after your death. Putting aside in a safe place your medical history and laboratory tests is very important as this information is necessary to review before we can conduct the post-mortem investigation.
In the event that death has just occurred or is imminent, time is of the essence. If this is the case, please call this emergency number 646-549-8880.
Thank you for considering this most invaluable donation to further scientific understanding of the neuropathologic effects of Lyme disease."
For more information on the Columbia Specimen Resource Repository please click here.
Notes from Columbia- Letting your family know your wishes is the only thing to be done before hand. The Consent is obtained from the family member at the time of death. Also, it would be helpful to have them know where your lab results are kept. We are in the process of putting up a general questionnaire on the web but this won't be up for awhile and it isn't necessary.
You should be aware there might be some costs associated with the harvesting of the organs before shipping and this can vary depending on where it's done. Dr. at Columbia makes the arrangements when he is notified. We will pay for the transport of the tissue to the office. As an example, recently, we received a donation which was harvested at U Conn and the family was charged $300.
Lyme Disease Biobank
Tissue, Blood, Urine
Information about the biobank...
https://ndriresource.org/uploads/attachments/cjt77dm7h04omgxu1hxv9ww96-ldb-tissue-program-faqs.pdf
Questions & Answers
From Lyme Patients And/Or
Their Family Members
Question...
Hi Lucy,
Would Igenix tissue testing be of any value? When my relative died, Dr. X recommended sending brain stem tissue to Igenix but he never had a positive 2tier test.
Answer...
So sorry to hear about your loved one. I am certainly no expert in this field- I just put the information above together because it is a question that is often asked.
My thought in your case would be that you may or may not get a positive IGeneX test by having donated tissue samples tested there (due to unreliablity of tests in general).
It depends too on what you want from the tests. If it is for your own satisfaction (yes or no he had Lyme disease?) then trying this approach may be of help to you personally if the sample is processed properly and sent in a rushed manner, and IGeneX is contacted in advance and will accept and test the sample. However, a blood sample may provide the same answers and be simpler to obtain and process.
If your goal is to assist others with the information gleaned from a positive test on brain tissue I am not sure it would be of value to the scientific community in that specific circumstance since there is no one to follow up with the information, and I am pretty sure IGeneX wouldn't publish on any findings.
A better place might be to send samples to Paul Duray Foundation? They should be contacted in advance to discuss details.
You must also consider the costs involved in harvesting, preparing, storing and shipping tissue or blood samples and consider if legal papers were drawn up in advance giving someone permission to harvest these samples and have them tested.
Additional Information
Sample Forms Regarding Tissue Donations To Attach To Your Will
ILADS is not asking for organ or tissue donations, but they do ask for donations of money and vehicles to help support their mission.
Dr. Eva Sapi MAY be interested in blood, tissue or organ donations. You can ask your family to contact her at the appropriate time. Information here.
The Paul Duray Research Fellowship Endowment, Inc. may have interest in tissue samples or organ donations. Please contact them at the link here.
Thoughts & Opinions
by Lucy Barnes
1. This is MY opinion. I am not a lawyer, nor an expert in this area. I am simply sharing some thoughts to give patients some ideas on how they may want to handle their own living will, advanced directives and tissue and organ donation issues.
2. Before you finalize anything be sure to have a trusted lawyer review it AND most important be SURE your family knows your wishes. Remember, THEY can make or break the deal. You MUST talk to them and be sure your wishes are clear and understood.
I have done a lot of research into organ donation over the years. My conclusions/opinions are as follows:
1. Lyme patients should NOT donate organs or tissues in the standard way others would designate this be done (organs go to the general public). Not much, if anything, is done in the way of tick borne disease testing on organs and even if recipients of donations did investigate Lyme or tick borne coinfections in tissues and organs, the tests for Lyme are missing 75% of those infected.
Hopkins published an "oops someone messed up" abstract a while back where they reported on several patients getting Babesiosis due to organ/blood donations. My thought is- heaven forbid if we give this horrible disease to others who are already bad off! That would be heart-breaking.
2. Personally, I WANT to donate my organs or do something to assist with tick borne disease research. So, what I have done is to leave the organ donation designation on my drivers license. I carry the organ donor card with my license too. On the card I wrote,
"LIMITATIONS! Please contact family or family doctor at this number _________".
The hospital won't start tissue or organ donation procedures until a family member is notified (and permission is gained) so we don't need to be concerned that our organs will accidently go to someone just because you are listed as an organ donor on your drivers license.
To note- When a person dies or is in a medical state where he is not going to survive, EVEN if the hospital/funeral home, etc. have documents and strict instructions to donate any and all organs...
If even ONE of your next of kin (one daughter out of 7 kids for example) states they don't want your organs donated for any reason what-so-ever no one will be able to use the organs or follow through with the wishes of the deceased and the rest of the family.
The reason- Lawsuits.
I asked about this unwritten policy and this is what I was told...
The hospital's theory is a decreased person won't sue for the hospital/research center not using the organs, but a living relative who objects can sue hospitals, funeral homes, etc. That can cost the hospital or other facility big bucks. And that HAS happened and has happened quite often.
3. If you want to donate your organs you MUST, absolutely MUST, be sure ALL members of the family know your wishes very clearly in advance and will abide by them. Like I said previously, one person can "blow" the whole deal very easily by objecting to the donation.
4. I wrote an adjusted copy of an advanced medical directive and living will to fit some Lyme patients situations (see forms at links below). You may want to have your organs, and/or tissue samples and blood samples donated for research, and you may want to give permission to have your personal medical records and lab reports, if needed, released to the one who takes the samples in order to aid in their research.
Often it is required to have a positive Lyme blood test sent with the samples being donated.
Please note- If a Lyme patient decides to donate their organs the recipients usually don't need the entire body or individual organ for research purposes, only small tissue samples of the organs.
This knowledge may encourage more patients to donate, and also "sounds and feels" a bit better to the family of the deceased when the time comes. You can also say exactly what you want to do on your instruction form that is kept with your advanced directives and living will.
5. Columbia University Lyme Research Center recently developed a repository that includes a tissue bank to store blood and tissue samples.
Columbia's website states:
"To enhance and promote research focused on improved diagnostic tests, we are committed to serve as a resource for serum and spinal fluid specimens that can be accessed for study both by researchers at Columbia and by researchers throughout the world.
To further characterize the extent of involvement and damage by Borrelia burgdorferi in humans, brain, spinal cord, and other tissues from people who have had Lyme disease at some time in their life are collected for current and future investigation at the NYS Psychiatric Institute. People with a history of well-documented Lyme disease, which must include a positive Lyme blood test, should contact us at lymecontact@columbia.edu
It is most important that your next of kin or other individual who will be responsible for arrangements after your death be made aware of your wishes, provided with the Columbia Lyme Center contact information, and be informed that they should contact us immediately after your death.
In the event that death has just occurred or is imminent, time is of the essence. If this is the case, please call this emergency number 646-549-8880."
http://www.columbia-lyme.org/research/columbia_specimen_bank.html
6. The labs can use the samples for research as they see fit. If they charge a fee for testing (or you wish to make a donation to keep the facility up and running), perhaps some of the proceeds of a life insurance policy can be designated to cover any fees, which shouldn't be more than testing normal tissue samples and blood work. Harvesting organs may require fees in the thousands of dollars. Please check with your local funeral homes or Medical Examiners office in your state for more information.
I also suggest attaching a copy of whatever you decide to do to your will, and if you have a lawyer give them a copy and be sure they review it for legal appropriateness. Also provide copies of your documents to your doctor and give a copy to each family member.
Be sure to have an attorney advise you of the laws in your state and what is best for your own personal situation.
Medical Power of Attorney
Effective Upon Execution
ADVANCE DIRECTIVE
APPOINTMENT OF HEALTH CARE AGENT
I, ______________________________ , a resident of:
____________________________________________
Phone numbers and other information:
____________________________________________
designate _________________________________, presently residing at:
____________________________________________
Phone numbers and other information:
____________________________________________
as my Agent to make any and all health care decisions for me, except to the extent I state otherwise in this document. My Agent shall have full power of attorney authority for health care decisions. For the purposes of this document, "health care decision" means consent, refusal of consent, or withdrawal of consent to any care, treatment, service, or procedure to maintain, diagnose, or treat an individual's physical, emotional, or mental condition.
My Agent's power of attorney authority becomes operative when this document is signed. This power of attorney exists indefinitely from its date of execution, unless I revoke the power of attorney in writing.
If I am incapable of making an informed decision regarding my health care, as determined by my Agent, I direct my health care providers, after obtaining written permission from my Agent, to follow my instructions as set forth below in the Advanced Directives. I have initialed all those that apply.
If my death from a terminal condition is imminent and even if life-sustaining procedures are used there is no reasonable expectation of my recovery as determined by my Agent:
_______I direct that my life not be extended by life-sustaining procedures, including the administration of nutrition and hydration artificially.
_______I direct that my life not be extended by life-sustaining procedures, except that, if I am unable to take food by mouth, I wish to receive nutrition and hydration artificially.
If I am in a persistent vegetative state, that is, if I am not conscious and am not aware of my environment nor able to interact with others, and there is no reasonable expectation of my recovery, as determined by my Agent:
_______I direct that my life not be extended by life-sustaining procedures, including the administration of nutrition and hydration artificially.
_______I direct that my life not be extended by life-sustaining procedures, except that, if I am unable to take food by mouth, I wish to receive nutrition and hydration artificially.
If I have an end-stage condition, that is, a condition caused by injury, disease, or illness, as a result of which I have suffered irreversible, severe and permanent brain damage indicated by an inability to sustain life without drastic mechanical measures and have complete physical dependency on life sustaining mechanical measures, for which, to a reasonable degree of medical certainty, all possible treatment of the irreversible condition would be medically ineffective, as determined by my Agent:
_______I direct that my life not be extended by life-sustaining procedures, including the administration of nutrition and hydration artificially.
_______I direct that my life not be extended by life-sustaining procedures, except that, if I am unable to take food and water by mouth, I wish to receive nutrition and hydration artificially.
_______I direct that, no matter what my condition, medication to relieve pain and suffering not be given to me if the medication would shorten my remaining life, as approved by my Agent.
_______I direct that, no matter what my condition, I be given all available medical treatment (including but not limited to chiropractic care, physical therapy, supplements, herbs, alternative therapies, etc.) as approved and ordered by my Agent.
I direct that all medical treatment be approved or denied by my Agent, in writing, prior to administration or removal of such treatment, including but not limited to all medications, surgeries, therapies, chiropractic care, and/or other procedures.
I direct (in the following space, indicate any other instructions regarding receipt or nonreceipt of any health care):
____________________________________________
____________________________________________
____________________________________________
____________________________________________
Where necessary to implement the health care decisions that my Agent is authorized by this document to make, my Agent has the power and authority to execute on my behalf all of the following:
Documents titled or purporting to be a "Refusal to Permit Treatment", "DNR", and "Leaving Hospital Against Medical Advice"; Any necessary waiver or release from liability required by a hospital or physician.
Authorize my admission to or discharge from (including transfer to another facility) any hospital, hospice, nursing home, adult home, medical care facility, or private home;
Consent to the provision, withholding, or withdrawal of health care, including, in appropriate circumstances, life-sustaining procedures.
My Agent is to make health care decisions for me based on the health care instructions I give in this document and on my wishes as otherwise known to my Agent. If my wishes are unknown or unclear, my Agent (and my Agent ONLY) is to make health care decisions for me in accordance with my best interest, to be determined by my Agent after considering the benefits, burdens, and risks that might result from a given treatment or course of treatment, or from the withholding or withdrawal of a treatment or course of treatment. A second opinion from a trusted medical professional who is chosen solely by my Agent shall be obtained if they so desire.
My Agent has permission to consent to the disclosure of this information. No information will be disclosed to other parties without the Agents written permission, which will be determined on a case by case basis. This includes any and all medical records, for any purpose.
My Agent shall have full access to all current and past medical records, pharmacy/medication notes and prescriptions, physicians and other medical professionals notes and reports, legal records and notes, nurses and nurses aids notes or reports, x-rays, MRI’s, SPECT scans, ultrasounds, cardiac tests, physical therapy notes, lab reports, etc. and shall immediately upon their request, be provided copies of any and all records generated throughout my lifetime.
My Agent shall not be liable for the costs of care based on this authorization or otherwise.
My Agent has permission to authorize release of and obtain donations of tissues, organs, fluids, and other material for testing and/or research purposes, to be sent to facilities of their choice at the time of my death.
In the event that my designated Agent, ____________________________, becomes unable or unwilling to serve I hereby designate _____________________________ presently residing at:
____________________________________________
____________________________________________
Phone numbers and other information:
____________________________________________
____________________________________________
as my as my alternate agent.
I revoke any prior Medical Power of Attorney on file at any medical institution or medical professionals office.
By signing below, I indicate that I am emotionally and mentally competent to make this appointment of a health care agent, assign a power of attorney, and complete an Advanced Directive, and that I understand the purposes and effects.
The original copy of this Medical Power of Attorney is located at:
____________________________________________
____________________________________________
____________________________________________
Signed copies of this Medical Power of Attorney have been filed with the following individuals and institutions:
____________________________________________
____________________________________________
____________________________________________
Attending family physician or specialists
OTHER-
____________________________________________
I sign my name to this Medical Power of Attorney and Advanced Directives on the date of ____________________________________, at the following location:
____________________________________________
____________________________________________
_______________________________
NAME- Signature
_______________________________
NAME- Print
Statement of witnesses:
I hereby declare under penalty of perjury that the person who signed or acknowledged this document is personally known to me (or proved to me on the basis of convincing evidence) to be the principal, that the principal signed or acknowledged this durable medical power of attorney in my presence, that the principal appears to be of sound mind and under no duress, fraud, or undue influence. I am not the person appointed an agent by this document. I am not related to the principal by blood, marriage, or adoption. I would not be entitled to any portion of the principal's estate on the principal's death. I am not the attending physician of the principal or an employee of the attending physician. I have no claim against any portion of the principal's estate on the principal's death. Furthermore, if I am an employee of a health care facility in which the principal is a patient, I am not involved in providing direct patient care to the principal and am not an officer, director, partner, or business office employee of the health care facility or of any parent organization of the health care facility.
____________________________________________
Witness Signature and date
____________________________________________
Address and phone number
____________________________________________
2nd Witness Signature and date
____________________________________________
2nd Address and phone number
____________________________________________
Subscribed and sworn to before me on [DATE].
____________________________________________
Notary Public, [COUNTY, STATE]
My commission expires ______________________________________
Last Updated- October 2019
Lucy Barnes
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