Hospice Patients Alliance: Consumer Advocates

Poor Pain Control For Dying Children

While there are several specialty hospice programs for children in our country, research now shows that nationally speaking, children with cancer are dying in pain and not getting the pain management they need. We all know that we would do anything to help cure our children of such a deadly disease, so it is no surprise that physicians try their hardest to cure the patient all the way up to the end of life.

It appears that children with cancer are not being referred to hospice care in time to receive quality hospice care. It's hard to "give up" on a child and not try to cure him or her. But we believe that it's better to be realistic when there is little hope of a real cure. Hospice care emphasizes providing comfort and symptom control rather than cure.

Recognizing that the child is dying is not cruel or unloving. In fact, recognizing the truth and facing it head on is the first step to helping that child deal with his or her impending death. However much we may try to avoid dealing with such a difficult situation, death does come to some children in the form of a terminal illness. Hospice care is the appropriate care for children with that terminal illness, and we should be embracing the hospice philosophy of providing quality care for those who are so young. How odd it is that the system's misguided attempt to cure the children actually may be increasing their suffering!

Unnecessary and ineffective treatments can only bring more suffering to the children, while neglecting to provide them with the type of pain management that is expected in hospice. In fact, children may be less likely to be referred to hospice by their physicians (or by their parents), because they don't want to give up!

An article in the New England Journal of Medicine 2000; 342:326-333 presents research by: Joanne Wolfe, Holcombe E. Grier, Neil Klar, Sarah B. Levin, Jeffrey M. Ellenbogen, Susanne Salem-Schatz, Ezekiel J. Emanuel, Jane C. Weeks, entitled, "Symptoms and Suffering at the End of Life in Children with Cancer" The authors of the study write that "cancer is the second leading cause of death in children," that "according to the parents, "89 percent of the children suffered "a lot" or "a great deal" from at least one symptom in their last month of life, most commonly pain, fatigue, or dyspnea [difficulty breathing]."

The authors conclude that: "Children who die of cancer receive aggressive treatment at the end of life. Many have substantial suffering in the last month of life, and attempts to control their symptoms are often unsuccessful. Greater attention must be paid to palliative care for children who are dying of cancer." (N Engl J Med 2000;342:326-33...February 3, 2000) The New England Journal of Medicine maintains its website at: http://www.nejm.org where you can see a short excerpt of the article, arrange to see the full article, or you can find the article in their magazine/journal which is on sale and at some libraries (especially medical or nursing school libraries in your area).

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