Care of the Imminently Dying Patient

Transitioning to Conventional Ventilation, Decreasing Ventilatory Support, and Removal of Endotracheal Tube
If the infant has been maintained on high frequency oscillatory ventilation, s/he should be transitioned to conventional ventilation to facilitate parental holding and bonding prior to extubation. Immediate withdrawal of mechanical ventilation may precipitate air hunger and significant respiratory distress[111]. The ventilator settings may be gradually decreased over a short period of time to assure that pain management and sedation is adequate; if the infant appears uncomfortable or is experiencing air hunger, the titration of medications should be increased prior to the removal of the endotracheal tube. There is no need to monitor blood gases or chest imaging while weaning the ventilator prior to extubation. The process of weaning the ventilator will also increase hypoxemia and hypercarbia which may contribute to the level of sedation[106].

Pronouncing the Death
The nurse, physician of record or fellow acting under the physician of record should always document the time of death in the chart. The attending physician is responsible for signing the death certificate. Declaring the patient’s time of death should not interfere with parental bonding. To pronounce a patient dead, it is necessary to auscultate the chest and document an absent heart rate, no spontaneous respirations or movements for one full minute. Observing a flat line on an electrocardiography monitor is not sufficient to pronounce death as severe bradycardia may be undetectable by the monitor.

Organ and Tissue Donation
Organ donation can be a gratifying way for families to make a gift that allows their own child’s tragedy to benefit other children.  Infants may be organ or tissue donor candidates if they are close to term either at birth, or have lived long enough to be close to term.  Heart valves and other tissues may be donated postmortem in babies 36 weeks of gestation or greater, and qualification is weight-based (6 to 8 pounds based on tissue processor). Neonates do not quality for corneal transplantation. Even if the infant is not a donor candidate, the OPO should be notified of the death in every circumstance, and the coordinator’s name, date, and time of the conversation should be documented. OPOs are available 24 hours a day, 7 days a week including all holidays.

Donation after cardiac death is rare in the neonatal population, where a controlled withdrawal of support takes place in an operating room. For all donations other than heart valves and certain tissues, the OPO must be contacted prior to withdrawal of support, and the patient must be declared brain dead prior to procurement (whether or not harvest of organs occurs after brain death or cardiac death). Physicians should follow their hospital or institutional policy on declaring brain death in this population.

Medical Examiner
The medical examiner should be notified by the physician of record or other physician acting under the physician of record after an infant death has occurred. The medical examiner is available 24 hours a day, 7 days a week including all holidays. In the State of Texas, notification of the medical examiner is required for all children under 6 years of age who die. The medical examiner’s office will determine if the body may be released to the hospital where the death occurred. If the body is not released, the medical examiner will perform a mandatory autopsy. No parental permission is required.

Autopsy
If the body is released by the medical examiner, parental consent for an autopsy should be discussed concurrently or shortly after death. Written or witnessed telephone consent is acceptable. Parents are often receptive to knowing that an autopsy will help them to clarify many aspects of their child’s disease process, in addition to providing insight as to why their child died. Studies have consistently shown that in approximately 30 to 50% of cases the diagnosis of the infant was changed or new information was found at autopsy[257]. Although autopsies may only be helpful in informing the family predicting recurrence risk in future pregnancies and future diagnostic testing of siblings in 6-10% of cases[258], the information may still be helpful[259].

It is also important to discuss that autopsy is a painless procedure that is not disfiguring. Although restrictions may be placed on the extent of the examination, an unrestricted, complete examination will provide the most comprehensive information, and if performed correctly, has no impact on an open casket viewing. Limited autopsies regarding a tissue or organ of interest are also possible. In these cases, the pathology department usually requests that the chest of the infant is included in the evaluation if the parents agree. Genetic testing on blood or tissue may also be obtained without performing a complete autopsy. Autopsy performed with imaging technology, or VIRTOPSY[260-263], is now available at some centers.

Although timing is variable, the procedure is usually completed within 3 to 4 hours, and the body is available to the funeral home on the same day.  A verbal report is usually available in 72 hours and preliminary results within 7-10 days. Physicians and medical professionals caring for the patient are encouraged to attend the autopsy and discuss specific questions to be addressed with the pathologist. The final autopsy report is usually complete in 6 to 8 weeks, but may take longer in complex cases.

The physician of record is responsible for contacting the family and initiating a post-autopsy consultation. Parents should be provided with a copy of the autopsy report at the time of the meeting. Delivery of an autopsy report to parents by mail is generally not appropriate. Some parents may wish to accompany their child’s body to the morgue whether or not they have agreed to an autopsy.

Funeral Information and Support
Planning a funeral for one’s child can be an overwhelming and difficult task. The funeral information sheet included under “forms” may help in streamlining this process.