Responses to Dying and Death
Although dying and death have not been considered separately thus far, they can be viewed as the final end of the spectrum of a chronic condition. Therefore, all of the responses discussed so far also apply here, with some important differences.
RESPONSES FROM ADULTS
Dying and death are usually associated with sadness for parents, but may provide a measure of relief when death is inevitable and the patient is suffering.
The medical team might react to a patient's death as a failure on their part. This can lead to depression, helplessness, or even anger with themselves or others.
RESPONSES FROM CHILDREN
Children's responses to dying and death depend upon their ability to understand the finality of death.Usua lly by age 7 up to 11 years, an understanding is reached that death is irreversible. When the child is too young or the thought of death too painful, children do not acknowledge they are dying even though death is imminent. This is difficult for families and staff to understand at times. On the other hand, children are often well aware of their prognosis, even when adults tend to deny it.
USEFUL TACTICS
Denial and hope can be quite useful to all concerned, if they serve to sustain the patient and to keep the family mobilized. If denial is used by the family to totally avoid facing their child's death, they might have an even more difficult time after the loss occurs.
The medical team may accomplish most by acknowledging their own feelings as well as those of the family and by supporting the family as well as one another. As noted before, medical care providers often discover an internal discord with the task of providing hope for a child to whom a cure is not achievable. Identifying other hopeful goals with the family and the child can serve to alleviate some of this discord and helps maintain dignity for the child. Common sources of hope for end-of-life include completing desired tasks prior to death, establishing plans of care for comfort in final days, and creating advanced directives.
Example: Sabrina is an 18-year-old teen with Rett's syndrome. She has experienced significant decline over the last 4 months due to frequent, recurrent pulmonary infections. Her family and physician are concerned she may not live another six months. Christmas has been Sabrina's favorite holiday, and they worry she will not live to see another one. Her parents signed an out-of-hospital DNR with comfort care options during her last hospitalization, in addition to requesting the same DNR status for future hospital stays. Her doctor encourages her family to put up their Christmas tree and call the extended family together to celebrate the holiday, even though it is only June.
