Working with families who donate organs and tissues - includes related article on networks for the transplantation efforts

All of the patients and families with whom I work are coping with immediate death. Not an impending death, but one that has already occurred. They are never celebrating as someone would after a routine childbirth or a successful surgery. And in the first, most shocking stage of their grief, they are asked to make a decision that will affect the lives of people they do not know. The power they wield in their decision is amazing. In fact, they have the opportunity to create a heroic event out of a tragic death.

As transplant coordinator, I am called to work when someone has died, usually suddenly and tragically, perhaps in an auto accident or some sort of trauma. Although never a happy situation, it is my job to set an organ donation, it is my job to set an organ donation process in motion and see that it is carried out smoothly and to the benefit of all involved.

My hope of finding something positive in death has been reinforced by the many donor families I've had the privilege to meet. Also, I am helping to offer victims of endstage organ disease a chance at a healthier life through transplantation.

As a procurement coordinator for the Rush-Presbyterian-St. Luke's Organ and Tissue Recovery Program in Chicago, I am responsible for a variety of duties, as are all procurement coordinators across the country. Working to facilitate the availability of transplantable organs for patients in need, my primary role is to educate the public and the medical communities about organ donation needs and procedures.

Much of my time is spent on 24-hour call, helping hospital staffs with the identification and medical maintenance of patients who have been declared "clinically brain dead" and whose families have consented to donate the patients' organs for use in transplantation surgery.

Another major part of my role is to counsel families about organ donation procedures. I do this by answering their questions and not by persuading them or convincing them to donate. I obtain legal consent for donation, and orchestrate the coordination of surgical teams, possibly from all over the country, who are also on call to recover organs for their patients waiting for various types of transplants.

The public is often confused about organ donation and what it entails. Some people liken it to the Hollywood version, as depicted in the totally fictitious film, Coma. Others are concerned that the removal of organs from a person's body may mean the "multilation" of a loved one. These people need to understand that all surgery involved in organ removal is completely sterile and is done just as it would be on any living person in an operating room.

To illustrate what happens in an organ donation process, I'd like to use an example of one patient whose family consented to donate. Last summer, I received a call from the Intensive Care Unit of one of our referring hospitals, saying that it had received a 15-year-old boy who had been in an automobile accident. He had been riding his bicycle to work and was hit by a car. He sustained severe head injuries and extensive, irreversible brain damage. His attending physician, a neurosurgeon, determined that there was no hope for the boy. The parents were, naturally, in shock and distraught. They did not want him "lingering on a respirator."

Although the patient was receiving oxygen from a ventilator, causing his heart to continue beating artificially, he could not breathe on his own. He had no response to pain, no spontaneous movement nor showed any signs of life. Because of clinical signs and other indications proven through extensive testing, the cause of his condition was deemed irreversible by the neurosurgeon. The boy was declared "clinically brain dead."

Brain death means that a patient is no longer functioning at all on his own and, without respirator support, is no different than a patient who is dead in the traditional sense. Brain death is legal in many states, including Illinois. In spite of its legality, however, it is not a popular topic of discussion. Therefore, families need clear explanation of brain death from their physician to understand there is indeed no hope for their loved one. No patient who has met the stringent criteria of brain death has ever lived.

Understanding the tragedy of the situation and the grave news that this neurosurgeon was forced to present, he approached the family with three options:

* They could continue artificial life support for the patient. If this were done, the boy would biologically deteriorate rapidly and his heart would stop beating in a short period of time;

* They could discontinue life support and prevent waiting for the grim outcome, thereby reducing stress on themselves and reducing hospital costs; or

* They could choose to donate their son's organs for transplant with the potential of seeing him help at least two people--but possibly as many as six--who were seriously ill or dying from endstage organ failure.

The family, after discussions with the neurosurgeon, hospital chaplain and ICU nurse, chose to donate.

I spoke with the patient's father and mother, who acted as next-of-kin in signing the written consent. Both parents said that this is what their son would have wanted because he was "that kind of boy." They also said that they appreciated their physician and nurses bringing up the topic of organ donation because they would not have thought of it in the midst of their grief. They felt that by allowing their son to donate, they would be able to make some sense of his death--a common feeling among donor families.

It is important to note that even if a patient has signed an organ donor card, the actual removal of organs does not take place without written permission from the next of kin. This is done so that the utmost respect is shown for the donor family's wishes. In cases where a patient has signed a donor card, the families almost never refute the previously expressed wishes of the patient. The donor card is a legal document, but at most it establishes the donor's wishes to family and medical staff. In this case, the patient was a minor. The decision was made by his parents based on their relationship with him and what they thought was in his best interest. The parents consented to donate any organs that could be used, even though they could have specified certain organs.

In order to determine which organs could be suitably matched to recipients from this donor, I entered some of his vital information into a telephone computer system called the "NATCO 24-Alert" Organ Sharing System. This computer was created by the North American Transplant Coordinators Organization in 1983 for the purpose of identifying extra-renal (other than kidney) organ needs across the country. Housed at the University of Pittsburgh, the computer's information is updated daily so that any procurement coordinator in North America can access the information quickly and at any time by making one phone call.

By entering the weight, blood type, age and sex of my donor into the computer, I was told which transplant centers in North America needed his organs for their patients. Even though more than one center listed needs for this donor's organs, it was finally decided which transplant centers would come to the hospital for actual removal.

These decisions are based on medical condition and need of potential recipients and also on medical information about the donor. Yale University decided to send a surgical team to the hospital to recover his liver. Loyola University of Chicago's cardiac transplant team would recover his heart. The Rush Medical Center kidney transplant team would recover both kidneys and the Illinois Eye Bank would recover his eyes for corneal transplants.

Once that was determined, my job was, as usual, to organize an operating room time convenient for all teams and to make sure that their transportation from airport to hospital was the quickest possible so that organ preservation time would be optimal and not a moment would be wasted in transit. Timing is vital because teams recovering hearts and livers for transplant are limited in preservation time for the organs before they are transplanted into the matching recipients. While all of this was being coordinated, the ICU nurses in the donor hospital kept the patient's vital signs as stable as possible under the guidance of my medical supervisor, a transplant surgeon.

Individual preservation technicians for each team were alerted and prepared to store each organ for transplant after removal from the donor by a transplant surgeon from each team. Heart and liver would be stored in an ice and water, or "slush," solution. Kidneys would be stored on a perfusion machine. Corneas would be kept in separate containers filled with a sterile solution.

Recipient transplant coordinators for the heart and liver team, aware that a transplant was about to occur for one of their patients, called their recipients to the hospital and began preparing them for the surgery. Often a recipient is already hospitalized and in critical condition. During the removal of the organs at the donor hospital, the procurement coordinator, who travels with the team to recover the organs, is in constant telephone contact with the recipient's transplant surgeon and coordinator back home. They keep each other posted of their progress so that when the recovery team returns, the recipient is surgically ready to receive the new organ immediately. This is, again, so that preservation time is as limited as possible.

Yale University flew in a jet to a nearby airport and the team was transported by ambulance to the donor hospital. Loyola's team flew its own helicopter right to the hospital's grounds. Rush's kidney team was able to drive to the hospital because the kidneys can be preserved for a much longer time than other organs (up to 72 hours). Eyes are recovered after the patient is removed from the respirator and are stored in a tissue bank for use within three days.

Everything went as planned in the operating room. All of the organs were in excellent condition for transplantation surgery and were successfully transplanted. Kidneys were tissue typed and matched to suitable recipients through the United Network of Organ Sharing or UNOS National Computer Matching System. The donor's heart was successfully transplanted into a 51-year-old male, who did very well after the transplant. A 49-year-old female received the patient's liver. She was critically ill before the surgery and the liver transplant represented her chance at a healthy life. One of the kidneys was given to a 10-year-old boy and the other to a 54-year-old male. Both of them did very well post-transplant.

A month after the accident, the donor's mother called me to ask about the progress of the recipients and I gave her the information. She gain told me how very grateful she was to the nursing staff for presenting her with the option of organ donation. The donation made her feel better about her son's death because it lessened the finality of it for her.

This is not an isolated case. The patients whom I have worked with as organ donors have ranged in age from 18 months to 65 years. Their families have come from all walks of life and all levels of education. They have two things in common: generosity and sensitivity that is directed toward helping others and the desire to make something good come out of a tragedy.

If any family in this country finds itself in a situation where donation is an option, they will be treated with the utmost respect and professionalism by any member of the transplant community. As a member of NATCO, I share my concern for donors and their families with all transplant coordinators. We take pride in the service that we offer, knowing that we are working under very emotional circumstances.

To a family who is experiencing the pain of a loss, my presence does not indicate hope for their loved one. It does, I believe, represent some consolation in knowing that they can do something to benefit others in the name of that person. In time, perhaps families will learn enough about the benefits of organ donation to think about it before death occurs. Family discussions about donation while everyone is alive will lessen indecision in moments of stress.

COPYRIGHT 1985 U.S. Government Printing Office
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