Word: painful
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...study highlights the difficulty in treating dying children. Parents find it intolerable to witness their child in pain. Yet few parents, understandably, wish to concede that their child's illness is incurable. And that reluctance, combined with an uncertain outlook for many pediatric cancers, makes it much more difficult for caregivers to map out end-of-life treatment plans for seriously ill children. "An uncertain prognosis should be a signal to initiate, rather than to delay, palliative care," wrote the authors of a 2008 study conducted at the University of California, San Francisco, Children's Hospital, on pediatric palliative practices...
...parents about their attitudes toward hastening the death of their children (by the time of the study, the children's deaths had occurred between one and 10 years earlier) as well as their more current reactions to two hypothetical vignettes about children with fatal cancers. One vignette involved uncontrollable pain at the end of life, while the other involved irreversible coma. In both situations, the parents became more likely to endorse hastening death as the level of the children's pain increased. The likelihood of endorsement was also affected by race, religion and socioeconomics, with white or non-religious parents...
...discussions about hastening death in pediatric patients occur with about the same frequency and among the same demographic groups as euthanasia deliberations by family members of adult terminal patients. But in many cases, the family may choose different approaches depending on the age of the patient. Terminally ill adults' pain, for instance, is often alleviated through morphine-induced sedation - what is known as palliative sedation. Often, palliative sedation results in unconsciousness, and may also be accompanied by withdrawal of life-sustaining treatments - a legal option for end-of-life pain relief. But parents of young children are much more reluctant...
...study's authors note, however, that an overwhelming number of the parents said they would consider intensive symptom management to control their children's pain. This treatment involves increasing the dosage of medications to control pain, while accepting that it may increase the risk of sedation or breathing difficulties. The authors say such alternatives may be raised with parents who are trying to determine how to treat their dying child...
...cases, talking early on about measures to treat pain can help ease a family through a child's death. Wolfe emphasizes that discussing end-of-life options should never be seen as giving up. "Caregivers must create opportunities for parents to discuss their hopes but also their worries and fears about losing a child," she says. "For all involved, the healthiest long-term path is, Let's hope for the best but plan for the worst...