“My arms are empty without you! My heart cries out, lonely in the darkness, but you are not here.
No tears shall bring you back into my arms again. My mother’s love was not strong enough to keep you,
but it is strong enough to follow and find you, though all the mists of Eternity should try to come between!” – Joan Walsh Anglund
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Hospice views every life and death as unique and precious, and we know that the death of a loved one of any age represents a tragic loss for their family and friends. That said, there is a natural order of things; our elders are meant to predecease our youth, and when a child dies it violates that natural order. When a child and family are coping with life-limiting illness, hospice care is available for them in every way that we are there for our older patients and families and more, but there are important distinctions to understand.
With adult patients, signing on to hospice care means agreeing to refocus your treatment on managing symptoms and enhancing quality of life instead of aggressive, disease-modifying interventions. This can be a difficult decision for an elderly person and their loved ones, but for the family of a terminally ill child it is often unthinkable. That is why terminally ill pediatric patients can be under hospice care while simultaneously receiving aggressive/curative treatments so that families never have to choose one over the other. This arrangement is referred to as “concurrent care”, and it eliminates the biggest barrier to terminally ill children and their families receiving critically needed care and support from hospice.
Goals of care can also look different with pediatric patients. Generally speaking, most of our older adult patients and their families wish to avoid further hospitalizations and prefer to spend their final moments at home or in home-like surroundings. Many of the children we care for, however, have spent a good portion of their lives in the hospital. They and their loved ones have cultivated strong relationships with their hospital-based team, and they find a sense of safety and comfort in the hospital setting. Hospice strives to honor our patients’ goals and wishes for end-of-life, and it is not unusual for us to spend many months caring for a child at home with the plan to transfer them to the hospital for their final days.
Above all else, our mission with pediatric patients and their families is to affirm and celebrate the child’s life, to maximize quality of life and minimize suffering, and to wrap these children and their loved ones a compassionate, comforting embrace of care and support. Few hospice organizations specialize in caring for pediatric patients, but for those of us that do there care be no higher expression of our calling to affirm and enhance life even as it nears its end.