Effects of Organ Donation on Family and Health Care Professionals: book for the broad public (French)

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Families who have agreed to donate the organs of a deceased loved one often say that they have no regrets. Many refer to giving the gift of life and believing that because of the donation, their loved ones' existences continued on in some way.

Confusion:
Very often, families express confusion about the concept of brain death and whether or not their loved one was really dead when his or her organs were taken.  This confusion occurs because people who are brain dead can have their heartbeat and breathing sustained for a short time on full life support.  To friends and family, they may seem "alive".  Brain death occurs when there is a complete and permanent loss of brain function.  Brain death has been called by scientists the invisible death: the brain is dead, yet the body will continue to live until the aorta is clamped by a surgeon, causing the heart to stop beating, or cardiac arrest, which happens in the process of organ harvesting.  At this exact time of the aorta clamping (organ removal will start right after the aorta clamping, and just before this aorta clamping, the donated organs have been "detached from the rest of the body", ready to be retrieved), everyone in the OR (operating room) is silent.  How come?  Well this is because, for the surgical team, this is the exact time of death - physiological death of the patient, sorry, of the donor - a commodity, not a patient anymore, since the organ donor, as soon as he is brain dead, has no rights anymore: he is not a patient anymore, he is "being taken care" of not for himself, but for his organs. 

A minority of people (are we really talking about a minority?) who decided to donate their loved one's organs experience symptoms of post traumatic stress disorder.  This was most common if they had felt pressured to donate, felt "brain death" was counter-intuitive and transgressive, or felt disrespected.

Please read following articles by Mike Nair-Collins, affiliated to the Nathan Kline Institute for Psychiatric Research, NY, the Graduate Center of the City University of New York, Philosophy, and the Mount Sinai School of Medicine, The Bioethics Program:

- "Death, Brain Death, and the Limits of Science: Why the Whole-Brain Concept of Death Is a Flawed Public Policy." Journal of Law, Medicine and Ethics 38 (3):667-683. Published 29 SEPT 2010

Abstract: "Legally defining 'death' in terms of brain death unacceptably obscures a value judgment that not all reasonable people would accept. This is disingenuous, and it results in serious moral flaws in the medical practices surrounding organ donation. Public policy that relies on the whole-brain concept of death is therefore morally flawed and in need of revision."

- "Consent for Organ Retrieval Cannot Be Presumed." HEC Forum 21 (2009)

- "Reevaluating the Dead Donor Rule." Journal of Medicine and Philosophy 35 (2):1-26. Published 25 FEB 2010

Abstract: "The dead donor rule justifies current practice in organ procurement for transplantation, and states that organ donors must be dead prior to donation.  The majority of organ donors are diagnosed as having suffered brain death, and hence are declared dead by neurological criteria.  However, a significant amount of unrest in both the philosophical and medical literature has surfaced since this practice began forty years ago.  I argue that, first, declaring death by neurological criteria is both unreliable and unjustified, but further, the ethical principles which themselves justify the dead donor rule are better served by abandoning that rule and instead allowing individuals who have suffered severe and irreversible brain damage to become organ donors, even though they are not yet dead and even though the removal of their organs would be the proximal cause of death."

In March 2005, I've initiated a blog dedicated to organ transplant ethics, and from 2005 (to date) I've been collecting testimonies regarding next-of-kin organ donation decision.  Quite frankly, the sorry stories I've heard about over the years illustrate Mike's theory: brain death ethics is flawed, so is presumed consent.  Yet those parents, or husbands, or wives do not regret the decision they've made: consenting to organ donation.  Their concern is: my beloved one was not dead when I gave him/her away for the organ retrieval.  There must be a cleaner way to go.  Robert Donald Truog MD, PhD (Harvard Medical School) says "brain death is too flawed to endure, too ingrained to abandon".  He seems to be very right about that!  Yet those relatives who are morally devastated because they still have no answer to their questions (anesthesia before starting the organ retrieval or no? What did "they" retrieve exactly?) are determined to show the broad public that there must be a better solution to get organs that are suitable for a transplant than this legal fiction:  pretending the dying patient is a dead donor.  With this legal fiction, called "the dead donor rule, society and medicine have chosen exactly the wrong way to go" (please refer to video) ...

"For all its historical relevance, the dead donor rule really misses the point and should be abandoned now."  (R.D. Truog, MD, PhD).  The dead donor rule is a dead-end.  Is it too ingrained to abandon? ...

I am liasing on a regular basis with MD's, transplant surgeons, transplant coordination teams, parents consenting to organ donation, MD PhD Deputies, such as Pr. Bernard Debré, or Dr. Jean Leonetti, in charge of French Bioethics laws, which have just been revised, by the way, but to little avail, as far as dead donor rule and brain death are concerned ...  I am currently writing a book intended for the broad public:  presumed consent and dead donor rule set the legal standards for the so called "post-mortem" organ donation in France.  This book should be ready in about one month's time.  I'm sure Mike won't mind the exposure - his articles being quoted in a French book intended for the broad public, re organ donation - I won't neglect to refer to his work! ...

Actually, you can follow Mike's work at:
http://rfmh.academia.edu/MikeCollins

Of course, I'd be more than happy to share with him some (precious) testimonies I got re next-of-kin consent to organ donation ...