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Caring for a Dying Child

By: Elizabeth Grace - Updated: 17 Oct 2016 | comments*Discuss
Terminally Ill Kids Palliative Care

The stress and grief associated with the terminal illness of a child can be overwhelming for parents and other caregivers, but such difficult times must be endured by parents worldwide. Losing a loved one is never easy, but the loss of a child seems especially tragic, making it one of the most unthinkably painful of human experiences.

Managing Children’s Physical Needs

The type of medical care required varies greatly, depending on the nature of the illness, but most parents prefer to keep their children at home as much as possible, reserving hospital visits for emergency care or other times when treatment requires more than can be managed in the home setting. Most children (and adults, too) are most comfortable when in familiar surroundings, with their favourite people and things close at hand. When possible, providing an environment that is homey and comfortable is best, with many modern facilities making efforts to emulate home-like settings. With the assistance of caring medical advisors, many conditions can be managed by family members, who may choose to provide most of the hands-on care, helping children to live as normally as possible. This dedication to providing daily care may require parents to take on tasks typically performed by medical personnel, such as administering medications and managing various medical treatments.

Emotional and Spiritual Issues

The emotional and spiritual needs of terminally ill children require just as much attention as their physical needs, sometimes even more. Children are certain to have questions about their symptoms and prognosis, some of which may be difficult to answer. Honesty is necessary, but maintaining hope is important, too. Each family must decide for themselves how to field the questions and concerns of their children, but most choose to give information based on a number of factors, including the age and maturity of the child, as well as their level of expressed interest. Some kids indicate a need to be well informed, while others seem satisfied with basic information. All kids, though, need to know that they can freely express their emotions, so parents need to make themselves available to hear their terminally ill children’s concerns, no matter how difficult that is.

Spiritual questions are likely to arise as a result of a terminal diagnosis, too. Many kids wonder what will happen to them after they die and parents must decide how to answer their children’s inquiries. Talking about religious or spiritual beliefs can help to put children at ease, helping them to find peace and acceptance. Of course, each pair of parents must address these issues as they see fit, usually based on their personal beliefs.

Palliative and Hospice Care

Palliative care is sometimes confused with hospice care, but there are subtle differences between the two. Generally, palliative care is meant to provide symptom relief, which can be long-term, while hospice refers specifically to end-of-life care. While they may not be exactly the same, both palliative care and hospice care aim to provide terminally ill children and their families with assistance in meeting their psychological, emotional, spiritual and practical needs. Teams of professionals including nurses, psychologists, spiritual counselors, and social workers combine their skills to help patients and their families through the difficulties associated with illness and dying. Most provide hands-on care as well as offering some respite care so that parents and other loved ones can take some time to focus on their own, often overlooked needs.

Children get sick; it’s a sad fact of life. Usually, though, they recover and resume their active lifestyles. The injustice of a child being stricken with a terminal illness is undeniable, but sometimes, terrible things happen and all that parents and others can do is to help the child to be comfortable -- physically, emotionally, and spiritually. The last weeks and months of life might be considered the most precious of all, so it is important that parents utilise all resources available to them in order to make the most of their children’s remaining time.

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I'm the mom of a little girl who has a severe brain injury and is now severely chronically ill and will likely die from severe scoliosis (doctors can't operate) I can't find anywhere to meet with other parents who have a terminally ill child because it is not cancer and because my daughter is alive. any help would be greatly appreciated.I don't fit anywhere and I don't know where to turn.I have tried everything.Your child either has to be in hospice or already deceased. Please help.I am in new york city. 917-273-2924
vanessa - 17-Oct-16 @ 10:02 PM
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