There have been many changes to the original concept of end of life care. When hospice began, it was traditionally thought of as a place, rather than as concept of care; that it was just for the elderly. Hospice programs are evolving now to include the child facing end of life or a life limiting illness with support to their families.

 

HospiceCare of Southeast Florida, Inc.’s TiLLi Kids is a pediatric initiative developed in 2009. TiLLi stands for Terminal illness and Life Limiting illness, and offers care and support to those under the age of 22 and to their families. As a partner in the demonstration project, Partners in Care – Together for Kids in Miami-Dade, our talented and trained staff of pediatric clinicians care for and support chronically ill children as well as those children facing end of life. We also offer bereavement camps to those children who have experienced the loss of a loved one. The weekend camps, one in each county, are open to children ages 6-17 and are held in November, February and April of each year. Organized and run by clinicians and trained volunteers, each camper comes away from their camp experience with a new outlook, and with the skills to cope with their grief. They learn that they are not alone in their feelings, and the impact can be seen in improved grades at school and better behavior at home and school.

 

TiLLiKids was instrumental in helping a family from the Bahamas, when their very young daughter reached the point when all aggressive treatment had been exhausted. Diagnosed with Argininosuccinate Lyase Deficiency (ALD), this little girl was welcomed into a family of two loving parents and four older brothers. Mom came to the United States with the baby and remained with her during treatment at Holtz Children’s Hospital in Miami. With the support of the staff at the hospital and her physician, Dr. Patricia Cantwell, the family was able to make the difficult decision to forego life prolonging procedures, and to seek comfort measures only. TiLLiKids was called in to assist the Mom – supporting her, answering her questions, so that she and the family could make informed decisions to plan the comfort care their daughter required.

 

One important decision was where to care for this little one – and HospiceCare of Southeast Florida, Inc. offered our inpatient unit at John Knox Village. This home-like setting provided a safe environment to deliver 24 hour nursing care, counseling and spiritual support and a place where Mom could stay with her daughter and assist with her care. Continuous medications for pain and symptom management maintained her physical comfort and supportive care to both Mom and daughter helped maintain emotional comfort. Decorated with pink blankets, toys, a mobile for the crib, and a rocking chair, Mom was able to spend all her time with her, bathing her and holding her. This little angel was in her Mom’s arms when she died.

 

November is National Hospice Month, and we salute all those who, with dedication and compassion, are there at one of the most important times in anyone’s life. Physicians, nurses, certified nursing assistants, social workers, chaplains, child life specialists, bereavement counselors and volunteers make it their mission to provide peace, comfort and dignity in the home through a local hospice program.