“First Person Consent” Can Increase Organ Donation


In the March 2009 edition of the Virtual Mentor The American Medical Association Journal of Ethics has published a paper in support of “First Person Consent,” a concept that could increase the number of organs available for transplantation. Now effective in 42 states, “First Person Consent” laws dictate that a documented donation decision like a donor card, drivers license etc, is legally binding and does not require the consent of any other person upon the death of the donor.   That means if a person has documented their decision to be a donor, families have no legal right to overrule it. You can read the report in its entirety at http://virtualmentor.ama-assn.org/

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I’ll explain the rationale in a moment but in order to make the concept effective two things must be done, 1) more people need to document their wishes.  That means that we should consider enacting laws in every state that require people to make a decision on donation when they renew their drivers license.  2) Medical personnel need to defer to the expertise of Organ Procurement Organizations (OPOs). 

 

To further quote from the AMA report,”The death of most people who become deceased organ donors is sudden, unexpected, and frequently tragic. The families of these donors are almost never prepared for this unfortunate situation.  “The refusal of families to grant permission is a major impediment to organ donation.  If, despite the law, we must get family consent, several factors have been shown to improve family consent rates:

 

First, the request for organ donation should be separate—or “decoupled”—from the declaration of brain death. This allows the family time to understand and accept the concept of brain death.

 

Second, the request for organs should be made by a trained OPO representative along with the hospital staff as a team. It is best that the physician or nurse caring for the patient not discuss organ donation with the family prior to OPO involvement. The hospital staff and OPO donation coordinator can work together to determine the best time to talk to the family.

 

Third, the request should be made in a private and quiet setting. Higher consent rates have been shown to occur when these 3 procedures are followed [1].(clicking on the number will provide further information).”

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The AMA report continues, “First-person consent removes a burden from family members because they do not have to come to a decision while attempting to cope with the very stressful situation of the death of a relative. First-person consent also avoids the problem of family members’ disagreement, and it may benefit families later on: more than one-third of families who made a decision themselves and declined to donate the organs subsequently regretted their decision [2].”

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The Virtual Mentor also says, “The medical care team must, to the greatest extent possible, remove itself from this conflict resolution process and rely upon the expertise of the organ procurement professionals. It is likely that the procurement coordinator has been in similar situations, has been trained to deal with them, and will be able to adequately resolve most of the issues to the satisfaction of all.

 

The AMA report is very emphatic, though, on the need for OPOs to develop and maintain a close working relationship with donor families.  “Although the law is on the side of the designated donor, it is critical to procurement organizations, transplant centers, and recipients that the OPO make a concerted effort to establish a cooperative relationship with the family. Legal and public conflicts that could result in fewer donors must be avoided. Willing participation from the family will also enable the procurement coordinator to obtain a thorough medical and social history, and will allow him or her to explain the procedure fully, confirm that donation will not interfere with the funeral, clarify that the OPO will assume hospital costs related to the donation, and convey much other information.

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Perhaps the most compelling reason to establish a positive relationship with the family of a potential donor is the benefit it offers to the future of organ donation. Working cooperatively with the donor family will result in a positive continued relationship. The surviving family members of a donor are known as donor families and, in our mission to increase awareness of the need for more organ donors, donor families remain an unparalleled resource for promoting the message.”

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I am a believer in adopting a system of presumed consent.  One in which people could opt out rather than opt in.  In countries where this has been tried donation rates have increased substantially.  But presumed consent requires a change in the law.  First Person Consent is already the law in all but 8 states.  What needs to be done is to fine-tune the system so we can eliminate the obligation OPOs and hospital officials feel to get donation permission from families.  Under First Person Consent laws no permission is necessary and that could mean a significant increase in available organs.  Perhaps if the AMA suggestions were adopted we might be a step closer to closing the organ donation/transplantation gap.

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Please comment in the space provided or email your thoughts to me at bob@baronson.org.  And – spread the word about the immediate need for more organ donors.  On-line registration can be done at http://www.donatelife.net/index.php  Whenever you can, help people formally register.  There is nothing you can do that is of greater importance.  If you convince one person to be a donor you may save or positively affect over 50 lives.  Some of those lives may be people you know and love.  

You are also invited to join Organ Transplantation Initiative (OTI) http://www.facebook.com/#!/group.php?gid=152655364765710 a group dedicated to providing help and information to donors, donor families, transplant patients and families, caregivers and all other interested parties.  Your participation is important if we are to influence decision makers to support efforts to increase organ donation and support organ regeneration, replacement and research efforts.   

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About Bob Aronson

Bob Aronson is a former journalist, a Minnesota Governor's Press Secretary and talk show host. For nearly a quarter of a century, he led the Aronson Partnership, a Minnesota-based communications consultancy that prepared corporate and government executives for crisis situations, regulatory testimony, media interviews and Presentations. Among his clients were all three U.S. Mayo Clinic locations, 3M, general Mills, CH2M Hill, the U.S. Department of Energy and scores more. In 2007 bob had a heart transplant after suffering from idiopathic dilated cardiomyopathy for 12 years. Shortly after he got his new heart he founded the now 4,300 member Facebook support group, Organ Transplant Initiative. At the same time, he established the Bob's Newheart blog where he has posted nearly 300 columns on organ donation, transplantation and other health related issues. The Viewpoint blog was started in late 2016 and bears the name of the Radio Talk show Bob did from 1966 until 1974, when he resigned to become Minnesota Governor Rudy Perpich first Press secretary. Bob and his artist wife Robin, live in Jacksonville, Florida with their two dogs, Reilly and Ziggy. Bob is also a woodworker and makes all of the furnishings for Robin's art festival booth. He also makes one of a kind jewelry or "memories" boxes that he donates to select transplant patients, caregivers, donor families and others who have somehow contributed to making life easier for the ill, the elderly and the less fortunate. Bob is in the final stages of editing two full-length novels that will be available on Kindle when ready for release sometime in early 2017. One is a sci fi novel about an amazing discovery near Roswell, New Mexico and you will be surprised to find it has nothing to do with the Roswell story everyone knows. It features a woman scientist who investigates impact craters for the U.S. Department of the Interior, Dr. Rita Sylvester and her female student intern. The other book is a political thriller that introduces a new hero to the genre, Fargo Dennison.

Posted on March 22, 2009, in Organ Donation. Bookmark the permalink. 7 Comments.

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  2. Great site this bobsnewheart.wordpress.com and I am really pleased to see you have what I am actually looking for here and this this post is exactly what I am interested in. I shall be pleased to become a regular visitor 🙂

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  3. Deborah Miller

    Thank you Bob for this valuable information. Perhaps my daughter would still be here if this concept was active in every state. Everyday I think “if only” abut organs being available for my daughter. I really enjoy all of your posts and information. Take care!

    Like

  4. Hi all,

    Thanks for posting, Its really nice post.

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  5. For more information about the status of first person consent legislation and donor registries across the country, please visit http://www.unos.org/resources/factsheets.asp?fs=6.

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  6. Bob,
    Thank you for addressing “first-person consent” on your blog. I was not aware of the AMA article and will certainly get a copy. At LifeSource we honor a person’s documented wishes to donate. We refer to it as “donor designation” rather than “first-person consent.” We have found that it is possible to honor a donor’s decision while providing the utmost support to families both at the time of ,and following, their loved ones donation. It is our hope that throughout the country all procurement organizations (organ, tissue, and eye) will do everything they can to honor a person’s wishes to help others in need.

    When a person has died they can no longer voice their intent. We need to remember that they did voice their wishes while alive and they are trusting us to uphold that wish. It is the law and it is the right thing to do.

    I hope others will add to this comment section about whether or not they honor the deceased’s decision and why.

    Thank you.

    Susan

    Like

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