Care for Children

Virginia is a pioneer in providing care for children, whether it is called pediatric hospice or pediatric palliative care, the goal remains the same, to help keep the family intact during and after the worst crisis a family can endure – the critical illness and death of a child. 

A pediatric hospice/palliative care program is designed to provide medical and supportive care for children so as to maximize the family’s options for home care of a terminally ill child, prevent unnecessary institutionalization and minimize the long term ill effects of parental and sibling separation. The focus is to assist families of terminally ill children to lead a more normal life by providing support services. Although attention is on caring for the immediate and specific needs of the dying child, much of the efforts of the hospice/palliative care team is on helping siblings and parents/caregivers handle the effects of a child’s life-limiting illness. Counseling is a very important ingredient to the holistic approach in caring for dying children and their families.

Children with life-limiting illnesses and their families receive support services in their own homes. It is difficult to imagine a more stressful situation than the death of a child. Parents must face problems ranging from dealing with drastically burdened finances, remaining strong and stable for the child and any siblings, coping with the requirements of a job, and managing the mechanics of daily home life. It is easy to understand why many families dissolve under the burden. Yet, for the child, however inadequate the situation and however traumatic to the family, home care is superior to institutionalization. 

Parents have a socially skilled advocate to rely on in times of emotional need, or in times of uncertainty, or when they need an agent to represent their concerns and desires to the health system bureaucracy. Staff are responsible for assuring an integrated continuum of care. They communicate with other clinicians and interested parties involved with the case; developing and writing a plan of care, and then monitoring and re-evaluating the care provided. The program provides parents with the supportive care necessary to keep their children at home and maximize each child’s potential. Experts in the field have proven that consistent supportive care can increase a child’s potential, often dramatically.

The mission is to ease the trauma of a child’s illness or death, and to reduce the disabling effects of pediatric illness, loss, and bereavement on families. The health care services allow a child with a life-limiting illness to stay at home whenever possible. However, when a child is ill, we never forget that the entire family is affected. Families who have a child with a life-limiting illness experience a high level of stress, including emotional, social, spiritual, and financial pressures. This stress often becomes debilitating to the entire family, sometimes resulting in dysfunctional family dynamics, financial hardship, and divorce. Numerous studies cite a divorce rate of 75% in families where a child has died. When pediatric palliative/hospice care is provided, the marriage failure rate is less than 20%. 

To help families cope, pediatric palliative/hospice care offers a broad range of services to address the physical and emotional needs of the child as well as the multidimensional needs of the family. It is a comprehensive system of care for children with life-threatening illnesses and their families from the time of diagnosis, with hope for cure through bereavement follow-up if cure is not attained.