Renate Focke's Story

It was in 1997, when we got the bad news that our son Arnd had had an accident. It took my husband and me six endless hours to get to the hospital where he was in an intensive care unit. His head was bandaged after an operation, he was breathing with the help of a respirator and was attached to monitors and other technical devices. He was in an artificial coma. He had a bruise over his left eye. As his right shoulder was not covered we could see a contusion there. Seeing my son, who had been so spirited and active, in this helpless state made my world suddenly dark and cold. The following time my husband and I sat next to him whenever it was possible holding his hands and talking to him. It was like moments of eternity and I thought I would remember these hours as a happy time, nevertheless. I feared and knew deep inside what the doctor on duty would tell us about his chance of survival. But hearing it was quite different. She told us, his family, that his "brain death" might be diagnosed soon. "Brain death" sounded like death. My husband said spontaneously, "Then we'll probably be asked about organ donation."

The world did not stand still. I did not break down or scream but functioned automatically - my perception, my feelings, my mind being separated, a state usually described as shock. We didn't know that my husband's remark made them consider our son as a prospective organ donor from the beginning. The next day the nurse on duty assured us, "You have come to a good decision." At that time we were not informed about the regulations and that this question shouldn't be asked even indirectly before the second "brain death" test and after the "brain death" has been declared. Instead we thought we would have to tell them as soon as possible. My son had said to his wife, our daughter-in law, he would donate his organs after his death but hadn't signed any donor card. So we felt bound to what he had wanted and informed the doctors before the "brain death" tests about our consent.

Realizing that my son was about to die was so overwhelming that organ donation seemed to be unimportant compared to that. We didn't even ask anybody for information or advice or discussed this issue. But my daughter and I felt uneasy about it. Five days after his accident when his "brain death" was diagnosed we gave our formal consent to the removal of his organs - a decision made in the state of shock and ignorance about what it implied.

What did my son know about organ donation? He only knew what the lay public is told, "Organ donation saves lives." He believed what the organ donor card says, that organs are removed "after my death". And he thought, "When I am dead I won't need my organs any longer. Then they can help other people survive." I had the same knowledge and point of view. We all were not informed about the consequences the organ removal would have. Too late I realized that we had to abandon elementary human rights: My son was treated, tested and conditioned not in his own interest, but in the interest of the organ recipients. So he could not die in dignity, without bodily harm, being attended by his family. Because of the organ removal we could not show him our love by being with him in the hour of his death.

Months later nightmares and inner films of this final operation began to haunt me day and night and made me feel bad and guilty because I hadn't protected my dying child against the demands of others. I'll never forget the last sight of my dead son in his coffin. His face told us that his death hadn't been peaceful.

Organ transplantation is often called an "established" therapy. The only focus is on the organ recipients. But what organ donation really means for the organ donors and their next of kin is not taken into consideration. After the consent of the family the transplantation medicine doesn't care about them any longer although it would be essential to listen to those who agreed to the organ retrieval and suffer from the consequences. The lives of a lot of donor families have been shaken, and many of us have lost their peace of mind.

This is what we should have known:

  • All the vital signs like the heartbeat, the circulation, the body temperature etc are still present right up till the point when the organs are removed.
  • The doctors apply painful stimuli to various parts of the body, especially the face, in order to confirm the diagnosis "brain death". If the patients do not response to this the conclusion is that their brain is destroyed.
  • My son was not anaesthetized during the operation and got no pain killers. Instead they treated him with paralysing medication to prevent disturbing movements of his body.
  • During the retrieval operation his blood was replaced by a cold fluid which flooded through his organs to preserve them for the organ recipients.
  • Before the organs were taken his heartbeat was stopped by cardioplegia.
This is my advice:
  • You have the right simply to say NO, especially when they ask you about the presumed will of your brain dead family member.
  • If you are willing to donate your organs, insist on your rights!
  • Make sure that you get all the relevant information.
  • Discuss organ donation with your family because it will have an impact on their mourning.
  • Decide which organs and tissues you are willing to donate and which not.
  • Insist on a general anesthesia during the organ removal.
  • Your next of kin have the right to see your dead body right after the organ removal operation.
  • Your next of kin have the right to inspect the files.
This is what I think after my bitter experience:

A therapy that needs the living organs of dying patients to help other patients survive cannot be called established. All those who claim that "brain death" is death close their eyes to the vital signs of a patient defined as dead. They also ignore the price the organ donors and their families have to pay. Before the accident, I thought that in a democracy people get full and fair information about interventions concerning life and death. Now I know better - or worse.

Renate Focke

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