A terminally ill child is a child that has no expectation of cure from his or her disease or illness, but requires as much care and comfort as can be provided. Knowing what a dying child understands about his or her condition, as well as fears, feelings, emotions, and physical changes that occur, may help family manage the final process better. 
        The emotional, physical, and spiritual impact a dying child has on a family and community cannot be measured. Understanding how children at different ages and developmental levels view death and dying may help to alleviate many of the fears and uncertainties associated with this process. 
        It is a natural response for parents, relatives, and friends to protect a dying child from the impact of a diagnosis. What and how much to tell a child is dependent upon many variables, including culture and ethnic background, the family structure and available support, and the
individual characteristics of the child and family. 
        However, children at an amazingly young age are aware of the seriousness of their condition by the emotions and actions of those around them. Anxiety and fear can be caused by a child's perception that they are being denied the truth about a situation. They detect inconsistency in information and avoidance of questions they ask. Often a child's imagination can create a much worse scenario than what may already be occurring. They, now more than ever, need love, support, and honesty from their family and friends. 
        The purpose of this module is to help family, friends, healthcare providers, and the terminally ill child work through the fear and anxiety associated with death and dying by providing information about this process and what to expect.

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When someone you care about learns that their child is facing a life threatening condition, you want to help, but don't know the best way.  No one wants to say or do the wrong thing.  While every circumstance is different, most families can use help, but don't know what to ask for or how to tell people what they need do it.

   Hearts and Hands staff and volunteers engage in public education on the challenges facing families as their children fight life threatening conditions or cope from the loss of a child.  We will engage in public speaking, presentations at forums, conferences, events.  We will also come to your workplace, neighborhood gathering, place of worship, etc., to offer helpful ideas and resources to ensure that you can offer meaningful help and support.  

Each year in Minnesota, 1,200 children will be diagnosed with a life threatening condition.  Approximately 800 children die every year.

In the Twin Cities, there are four hospitals dedicated to the service of children: Minneapolis Children's Hospital, Amplatz, (A Fairview Hospital in partnership with the University of Minnesota), Gillette Children's Hospital, and the Shriners Hospital.

However, there are no free standing respite/hospice centers specifically for children facing life-threatening illness in the Twin Cities.  There are up to 20 hospices for adults and many respite centers for developmentally or physically disabled children but none for the population we serve.

Services include:

• Respite Care When a child is being treated in hospital,there are wonderful programs available for parents and family members to stay.  But when a child is out of the hospital a parent is responsible for care, which is often around the clock.  While home health care can be provided, it is sometimes sporadic and inadequate.  A break for parents and families, where a child is cared for in a positive, kid-friendly place, is invaluable.  It gives parents a chance to interact with their other children, spouses/partners, other parents, or just to go out for a quiet dinner knowing that their child is being cared for.  No adequate place is currently consistently available in the Twin Cities.  While planning and development of a new respite and hospice care center is underway.  Hearts & Hands will work with the community to find temporary respite options for parents and children.
• Palliative Hospice Care Few options other than a hospital or home are available to provide end-of-life care specifically designed for children in our community.  Until an independent, free standing facility is built in the Twin Cities, it is important to find other options such as designated space in an adult hospice, a private home, or other appropriate place.  While planning and development of a new respite and hospice care center is underway, Hearts & Hands staff will work with the community to find options for children.