Issues In Pediatric Organ Donation

Carman Koch D'Agostino, RN, MSN
Carman Koch D'Agostino, RN, MSN is with Hospital Development and Professional Education
of the University of Florida / Jacksonville Organ Retrieval Program.

Also see our article on Questions & Answers about Organ Donation

In recent years, improved operative techniques and immunosuppressive therapies have made organ transplantation a valuable and accepted treatment for patients with organ failure. In 1997, 11,387 kidney, 4,163 liver, and 2,290 heart transplants were performed in the United States.1 However, over the past years, it has become increasingly evident that the primary impediment to progress in organ transplantation is not a lack of technology, but rather a lack of donor organs, especially within the pediatric population.2 As of August 1, 1998 there were 57,732 patients listed with the United Network for Organ Sharing (UNOS). Of those patients waiting, 2,022 were children under the age of 17. The number of pediatric patients waiting for various organs is shown in Table 1.3 The shortage is so severe, that 30% to 50% of children younger than the age of two, who are registered for transplantation, will die while waiting for a donor organ to become available.4

Table 1. Pediatric Waiting List

Kidney
Liver
Heart
Lung
Heart-Lung
Pancreas
Intestines
Kidney-Pancreas
640
823
228
185
48
9
69
20
Verbal communication, United Network for Organ Sharing, August 1998

Three reasons have been cited as significant factors contributing to the shortage of available organs: families are not asked about organ donation, healthcare professionals do not pursue potential donors, and families deny consent for organ donation when asked.5 These factors are examined throughout the different steps of the donation process.

The Donation Process

Organ procurement usually begins as a thought process in the minds of healthcare professionals who treat the critically ill. Virtually any patient with severe head trauma could be considered a potential donor, and the possibility of donation should always be considered as a logical step in the algorithm of care. Potential donors include those who have suffered spontaneous intracranial hemorrhage, acute neurologic or neurosurgical trauma, gunshot wounds to the head, primary brain tumor, metabolic disorders, cerebral anoxia, or drug overdose.6

Donor Identification

An estimated 100,000 transplantable organs and tissues are lost each year because potential donors are not identified and donation is not requested. Of the approximately 20,000 individuals who annually suffer brain death from trauma, only 3,000 become organ donors.7 Yet, the number of people waiting on the national UNOS list grows.

However, if donation is recognized as a part of the therapeutic protocol, the diagnosis of brain death can be made in appropriate patients, and from this, potential donors can be identified. At this time, the healthcare professional needs to consider the issue of organ procurement as a standard aspect of patient care. The impact of this shift in the mind-set of healthcare professionals could result in an estimated 60% increase in the number of transplantable organs.8

Brain Death

Following the identification of a potential donor, clinical signs of brain death must be recognized. Brain death has been defined by the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research as the condition in which there is irreversible cessation of all functions of the entire brain, including the brain stem.9

In 1980, Florida adopted statutes acknowledging brain death and delineating procedures for physicians to make this diagnosis. In 1981 however, the President's Commission concluded that physicians should be particularly cautious in applying brain death criteria to determine death to children younger than five years.10

A Task Force for the Determination of Brain Death in Children was established to develop guidelines for children under the age of five. The guidelines provide accepted clinical criteria for determining brain death in three categories of children: those over one year of age; those aged two months to one year; and those aged seven days to two months.11 Most authors now agree that standard brain death criteria can be applied to all pediatric patients except preterm infants. The Harvard criteria have become the standard in the diagnosis of brain death. These criteria are shown in Table 2.12

Table 2. Harvard Criteria For Diagnosis Of Brain Death (1968)

1. Unresponsiveness, temperature >320 C
2. Absence of depressant drugs
3. No spontaneous movements
4. Apnea -- off respirator for 3 minutes at room air
5. No reflexes including

Decerebrate or decorticate posturing
Pupils -- fixed and dilated
Swallowing, vocalization
Corneal and pharyngeal reflexes
Stretch and deep tendon reflexes

6. Isoelectric electroencephalogram
7. All of the above should be repeated after 24 hours

While physicians and nurses have become more comfortable with the diagnosis and care of brain dead patients, the lay public is relatively confused about the implications of this diagnosis. Many families, when informed that their loved one is brain dead, will often ask when that person will recover, or whether he or she will be able to lead a normal life. Some may be concerned that their loved one is a "vegetable" who will have to be permanently supported unless legal intervention occurs. Other people see the diagnosis of brain death as a means for acquiring donor organs. Recent novels, films, and television have only worsened this perception. Healthcare professionals must take the lead in educating the general public about brain death. The general population needs to understand that when the brain is dead, the patient is dead and there is no hope of recovery. The patient is also legally dead and all medical support can and will be discontinued unless organ donation is considered and consent is given. The patient must be declared dead and the family must then give consent before any organs can be removed.

Organ Donor Criteria

Once a patient has been identified by a healthcare professional, a referral is made to the federally designated Organ Procurement Organization (OPO) serving that hospital. Organ donor criteria change often in the field of transplantation. What may be exclusionary criteria today could be acceptable tomorrow. Therefore, healthcare professionals are strongly encouraged to contact the OPO with all potential donors. In fact, a 1995 Florida law requires that the OPO must be contacted about all deaths, even if the patient is clearly medically unsuitable. More recently in 1998, the Health Care Financing Administration (HCFA) instituted the same requirement, thus holding hospitals accountable for routinely referring all deaths and imminent deaths to the OPO.

A potential donor is medically evaluated by the OPO for any known medical or social history that would rule-out the possibility of donation. In general, donors cannot have any active systemic infection that could easily be transmitted to the potential recipient. Additionally, the acceptable age for an organ and tissue donor is changing; at this time individuals ranging from newborn to over 75 years of age could be considered potential donors.

Requesting Organ Donation

Most Americans express favorable attitudes toward organ donation. In one recent Gallup poll, 69% of adults in the United States said that they would like to be an organ donor.13 In order to facilitate this desire, the healthcare professional must ensure that every family is given the option to donate at the time of their loved one's death. More importantly, families have the legal right to be offered the opportunity of donation. In 1984, the National Organ Transplant Act established a Task Force on Organ Transplantation to report on the medical, legal, social, ethical and economic aspects of organ procurement and transplantation. The Task Force presented recommendations for a fair and equitable donation process. From these recommendations came the precedent-setting law entitled "Required Request". This law required that all families will be offered an opportunity to donate loved ones organs and tissues. Further, by October 1987, all hospitals receiving Medicare and Medicaid reimbursements must establish programs to encourage organ and tissue donation. Additionally, the Joint Commission for the Accreditation of Healthcare Organizations (JCAHO) also instituted similar requirements for hospitals.

Required Request mandates the identification of potential organ donors and requires discussion of donation with family members. However, it does not identify who should be given this delicate responsibility of asking. In making the request for organ donation, the healthcare professional steps from the comfortable world of medicine and technology into the uncertain realm of emotions and perceptions, especially with a pediatric donor. Historically, the physician who pronounces brain death has been the person to explain organ donation to the family. Many physicians have expressed concern about conflict of interest or legal liability in acting as a facilitator for donation. Also, many have reported feeling inhibited by the concern of bothering the grieving family, the fear of refusal, or the lack of knowledge about the patient's wishes about donation.14 Consequently, most physicians prefer for their part in the donation process to end with the referral of the potential donor to the OPO. In accordance with the 1998 HCFA rulings, hospitals now have trained, designated requestors, working in collaboration with the OPO, before donation is discussed with the potential donor family.

The individual who has proven the most likely to obtain consent for donation is one who feels a strong, personal commitment to offering this option to the legal next-of-kin, has experience in the donation process, and is able to spend significant time with the grieving family in order to establish a trusting relationship. The organ procurement coordinator is the ideal individual who has the experience and time to devote to the family. Table 3 indicates the priority order for consulting with the next-of-kin.15

Table 3. Next-of-Kin
Order of Priority

  1. Spouse
  2. Adult son or daughter
  3. Either parent
  4. Adult brother or sister
  5. Guardian at the time of death
  6. Any other authorized individual

Timing of the approach is critical to the consent process. The family must be given enough time to understand the concept of brain death and that their loved one is dead before the issue of donation can be raised. The temporal separation of these two concepts, brain death and organ donation, is called decoupling. The practice of decoupling is associated with significantly higher rates of consent.16

Once the idea of brain death has been conveyed to the family, they should be allowed time to ask any questions they may have regarding the care and diagnosis of their loved one. After this has occurred, the family should be taken to a quiet, private area to begin the discussion of organ donation.

Donor family surveys have been conducted to examine the approach process to donation. Many have expressed discomfort with the approach process and have described the discussion as too hasty or callous. Thus, some families did not have enough time to adjust to their loss. Many families express their gratitude for having been offered the opportunity to donate their loved one's organs. It comforts many to know that "something good can come out of this tragedy".

On a recent trip to Jacksonville, Florida, the United States Assistant Surgeon General, Dr. Kenneth Moritsugu, spoke about his personal experiences, first as a donor husband, and years later as a donor father. From these experiences, Dr. Moritsugu stated that the patient is not just the one lying in the bed, but also includes, the family members and the potential recipients who will benefit from the donation. He added that the donor family perspectives on how they are treated and the attitudes of the healthcare professions greatly influence the decision process. If the family is treated with respect and dignity, they will be more open to the discussion of donation.17

Donor families rely on healthcare professionals for comfort and support. They are searching for all the information needed to make an informed decision about donation. Families need to be informed that the cost of donation is the responsibility of the OPO, not the donor family. Additionally, families need to be assured that funeral ceremonies usually are not delayed because of the donation process.

It is important for the healthcare professional to know that not all families will choose donation for their loved one. However, they can rest assured that they were at least given the option to decide for themselves.

Organ Donor Management

When a potential organ donor is referred to the OPO, a clinical organ procurement coordinator responds immediately to the call and will evaluate the donor who is maintained on a mechanical ventilator. The OPO coordinator, often a critical care nurse, will assist the healthcare professionals in the intensive care unit by providing procedural direction, staff assistance, and support for the donor family.

Once brain death has been diagnosed and the family has consented to donation, donor stability and proper organ function must be maintained. Optimal care of the donor ensures optimal organs for the potential transplant recipient. Table 4 indicates the protocol followed to maintain the integrity of the donor.18

Table 4. Goals For Maintaining Physiological Function Of The Organ Donor
Maintain normal cardiac output
Maintain adequate tissue perfusion
Ensure adequate ventilation and pulmonary stability
Prevent infection
Maintain adequate urinary output
Control diabetes insipidus
Maintain fluid and electrolyte balance
Maintain skin integrity
Regulate body temperature

Organ Procurement

The final step in the donor process is the recovery of the donated organs. Organ procurement is a sterile, operative procedure. It is considered a highly technical and complicated process involving trained surgeons, anesthesiologists, nurses, procurement coordinators and technicians.

Improved organ preservation techniques now make it possible for organs to be distributed on a regional and national basis through the UNOS system. Table 5 indicates the preservation times for the heart, lung, liver and kidney.19 UNOS regulates the allocation system for distributing fair and equitable organs on a local, regional and national basis.

Table 5. Organ Preservation Times
Heart
Lung
Liver
Pancreas
Kidney
4 hours
10 hours
24 hours
24 hours
48 hours

Bringing About Change -- How You Can Help

With the ever-increasing demand for organs and limited supply, it is now time to take action for improvement. First, it is evident that greater efforts to educate the healthcare professionals are needed. Workshops must be available with an emphasis placed on presenting the option of donation. Healthcare professionals need to remember that any decision a family makes is a good one; it is simply important that the family be presented with the option in a sensitive manner.

Secondly, emphasis needs to be placed on public awareness of organ and tissue donation. In 1994, the Ad Council and the National Coalition on Donation launched a massive media campaign designed to encourage families to discuss their wishes about donation. The members supporting the cause include the American Medical Association, American Hospital Association, Children's Organ Transplant Association and the National Association of Medical Examiners.

This campaign creates a message for families to talk about donation and to share the decision with their family. Slowly but surely, the goal is to spread the campaign message, "Share your Life…Share your Decision".

Whatever your role, as a healthcare professional, or member of the general community, you have the power to ensure that at least one more family discusses the option of organ donation -- your own.

REFERENCES
  1. National Organ Procurement and Transplantation Network. UNOS Update. Spring 1998.
  2. Morris JA, Wilcox TR, Frist WH. Pediatric Organ Donation: The paradox of organ shortage despite the remarkable willingness of families to donate. Pediatrics. 1992; 89, 411-415.
  3. United Network of Organ Sharing Statistics. Verbal Communication. Richmond, VA, August 1998.
  4. Peabody JL, Emery JR, Ashwal S. Experience with anencephalic infants as prospective organ donors. New England Journal of Medicine. 1989; 321: 344-350.
  5. Weiss AH, Fortinsky RH, Laughlin BL, et al. Parental consent for pediatric cadaveric organ donation. Transplantation Proceedings. 1997; 29: 1896-1901.
  6. Warren J, Gill B (eds): Guidelines for Hospital Administrators for implementing Required Request. Alexandria, VA, American Council on Transplantation, 1987; 1-36.
  7. Merz B. The organ procurement problem: Many causes, no easy solutions. Journal of American Medical Association. 1985; 254: 3285-3288.
  8. Gill B, Transplant Challenge: A role for healthcare professionals: The Donation Process. Sandoz Pharmaceuticals, 1988; 17.
  9. Guidelines for the determination of brain death: Report of the medical consultants on the diagnosis of death to the President's commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Neurology. 1982; 32: 395-399.
  10. Annas GJ. From Canada With Love: Anencephalic newborns as organ donors? Hastings Center Report. December 1987; 36-38.
  11. Task Force for the Determination of Brain Death in Children, "Guidelines for the Determination of Brain Death in Children," Annals of Neurology. 1987; 21. 616-617.
  12. Farrell MM, Levin DL. Brain Death in the pediatric patient: Historical sociological, medical, religious, cultural, legal, and ethical considerations. Critical Care Medicine. 1993; 21(12), 1951-1965.
  13. Gallup Survey. "The American Public's Attitudes toward Organ Donation and Transplantation." The Partnership for Organ Donation and the Harvard School of Public Health, 1993.
  14. Walker JA, McGrath PJ, McDonald NE, et al. Parental attitudes toward pediatric organ donation: A survey. Journal of Canadian Medical Association. 1990; 142(2), 1383-1387.
  15. Howard S. How do I ask? Requesting tissue or organ donation from bereaved families. Nursing 89. 1989, 19(1).
  16. Drachman J, Beasley C. Hospital and Public Education-Is it the key to unlocking the organ donor potential? Contemporary Dialysis and Transplantation.1994; 15(8).
  17. U.S. Assistant Surgeon General, Dr. Kenneth Moritsugu. Personal Communication. August 1998.
  18. Goldsmith J, Montefusco CM. Nursing care of the potential organ donor. Critical Care Nurse. 1985; 5: 22-29.
  19. Donation and transplantation: Medical School Curriculum. (1992). Richmond, VA: UNOS.
September, 1998/ Jacksonville Medicine

 

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