Organ Donation in Pediatric Patients with Severe Anoxic Brain Injury

INTRODUCTION

There is a persistent mismatch between the supply of and demand for transplantable organs worldwide, resulting in deaths of individuals on the waiting list. The decision – making process of parents to donate organs of their deceased child with anoxic brain injury is very traumatic and difficult. It is greatly influenced by delay in initiation of brain death protocols to deal with the shock, their expectations from the health care professionals during the pre- donation period and early involvement of the palliative care team. The team counsels and supports the family emotionally and spiritually.

We present patients who were admitted with severe anoxic brain injury and discuss the invaluable role played by the pediatric palliative care team both for successful organ donation and in supporting the bereaved parents.

CASE REPORTS

DISCUSSION

The overall mortality rate in PICU across US teaching hospitals is around 5% that is well below the adult critical care units. While the mortality rate in children has nearly halved, the mode of death in the PICU has been proportionally same over the past two decades.[1] The causes of decrease in mortality are likely due to the quality of care and more permissive admission criteria. The number of medically suitable patients who die within 2 h of planned withdrawal of life-sustaining therapy is nearly six times higher than the actual organ donors. The loss is due to delayed referral until at the time of or after planned withdrawal of life-sustaining therapy.[23]

Currently, more than 119,000 people are on the organ transplant waiting list, of which approximately 2000 are children under the age of 18.[4] The number of children on the transplant waiting list far exceeds the available pediatric organs.[5] The general public has good understanding of organ donation; however, only half of the family members approached are agreeable to donating the organs of their deceased child. This illustrates the critical need for early conversation about organ donation with the family of a brain-dead child.

Despite the dire need for organs, there are only few studies that have assessed the factors that influence decision-making process.[67] Decision-making at the end of life for children is the most traumatic and difficult experience families will ever encounter. The profound responsibility for counseling lies in the hand of the clinicians who care for them.[178] The palliative care team's role is invaluable to address the medical, psychological, social, and spiritual concerns of families and to empower them in making decisions.[910]

Counseling allows the parents of brain dead children time to reflect to deal with the imminent shock before being approached by the organ donor network.[7810] The context in which the information was shared, including sensitivity with attention to emotional needs, was the greatest impact factors in prior studies. Physician's attitudes including comfort in discussing brain death in a sensitive and timely manner have historically increased the success rate of consent for organ donation.[11] Delay in initiating brain death protocols appears to increase the willingness to participate and thereby increase the rates of donation.[678] In these studies, the authors concluded that the family members had time to deal with the initial shock of the trauma without dealing with the additional stress of a decision regarding organ donation. Privacy within the PICU along with a noncramped waiting area away from the PICU where families could talk, discuss, and cry were mentioned as a great need in such situations.[10]

Four main categories were identified that influenced families’ ability to agree or decline donation and their perspective of the decision-making process: knowledge of the deceased donation wish, views of the extended family, giving meaning to the death, and events that occurred in the hospital before the death of the child.[711]

Prior knowledge of a donation wish was thought to be an important factor in the decision-making process. Rates of adult organ donation and transplantation have increased steadily in the US and Canada, over the past decade due to increase in donation after circulatory death.[2] The reason for such success is mostly due to prior donation wish, but there is, however, no such data in children. An interesting fact noted in one study was that those with donor designation on their drivers permit were not more likely to become donors.[6] Donation wish or autonomy (the right of self-determination) does not hold for children, because they lack capacity; hence, we respect their wishes based on the best interest of the child as determined by the surrogate decision-maker, usually parents or a family member.[12]

In hospital care, including involvement of palliative care in collaboration with intensivists to counsel families to facilitate decision-making, were crucial to understand the emotional needs. This has demonstrated to greatly impact donation decision-making.[711] Further, familiarity with the professional who formally asked for donation was associated with better outcomes.[6] Parents of children hospitalized for longer period before death had time to understand and process the information.[6] A collaborative approach between palliative care team, intensivists, and organ procurement officers is the need of the hour and is often a lengthy process. Studies have revealed that families who did not donate reported that their decision was influenced by poor communication and the fact that not enough was done to save the life of the deceased child. Cultural barriers, negative views of other family members, and lack of knowledge about the donation process were other compounding factors. One study of nondonor families mentioned that few parents in their survey said that they were afraid that doctors would declare death too soon if they consented and others said that it may lead to prolongation of life in the ventilator and thereby delay the child's funeral.[13] Some parents also had the misconception that they would not be able to have an open casket.[11] Another study reported that incentives to increase organ donation in the form of cash payments or rewarded gifting was not effective.[11]

More than 1850 pediatric transplants were performed in 2016, with studies highlighting excellent clinical outcomes and quality of life for many patients.[4] Increasing organ recovery allows for more pediatric transplants and fewer pediatric waitlist deaths.[14] Despite the favorable outcomes, scarcity of donated organs continues to be the primary limiting factor in pediatric transplantation.[6] There is increased utilization of pediatric grafts by pediatric recipients and is likely a result of change in network allocation protocols. Children with end-stage liver disease had a scoring system and a regional sharing of pediatric donor livers was implemented. Policy changes were also enforced to give children organs from deceased donors < 35 of years. Size matching is an important component of organ donation with techniques such as split, reduced liver grafts increasing the pediatric recipient pool and decreasing waiting times.[14]

The bereavement support ranging from opportunity to lay down with the deceased, offering legacy such as hand and footprints, and the presence of spiritual counselors made positive impact for consent for donation.[7] It was suggested that the presence of a chaplain in the transplant team can actually facilitate the organ donation in addition to supporting families who have faith or no particular faith.[10] Following the declaration of death, families should be supported until they leave the hospital and follow-up calls should be made at regular intervals including referral to bereavement support groups. The bereavement care given to the families was much valued and remembered. Organ donation without palliative care service increases the risk of suboptimal end-of-life care and complicated bereavement.[12]

Lastly, all ethical principles apply in organ donation. Ethically, the act of recovery of organs does not cause any harm in a dead donor (nonmaleficence). Beneficence – the principle of doing good – is projected here as the potential donors, and families were given the opportunity to provide them comfort and knowing there is a meaning behind the death to save another individual. Justice is fair allocation of resources, when a person dying on an organ transplant list has the right to access life-saving organs from someone one who can no longer use them.[15]