Janet Duncan

Easing of Suffering in Children With Cancer at the End of Life : Is Care Changing?

PURPOSE In the past decade studies have documented substantial suffering among children dying of cancer, prompting national attention on the quality of end-of-life care and the development of a palliative care service in our institutions. We sought to determine whether national and local efforts have led to changes in patterns of care, advanced care planning, and symptom control among children with cancer at the end of life. METHODS Retrospective cohort study from a US tertiary level pediatric institution. Parent survey and chart review data from 119 children who died between 1997 and 2004 (follow-up cohort) were compared with 102 children who died between 1990 and 1997 (baseline cohort). RESULTS In the follow-up cohort, hospice discussions occurred more often (76% v 54%; adjusted risk difference [RD], 22%; P < .001) and earlier (adjusted geometric mean 52 days v 28 days before death; P = .002) compared with the baseline cohort. Do-not-resuscitate orders were also documented earlier (18 v 12 days; P = .031). Deaths in the intensive care unit or other hospitals decreased significantly (RD, 16%; P = .024). Parents reported less child suffering from pain (RD, 19%; P = .018) and dyspnea (RD, 21%; P = .020). A larger proportion of parents felt more prepared during the childs last month of life (RD, 29%; P < .001) and at the time of death (RD, 24%; P = .002). CONCLUSION Children dying of cancer are currently receiving care that is more consistent with optimal palliative care and according to parents, are experiencing less suffering. With ongoing growth of the field of hospice and palliative medicine, further advancements are likely.

Providing pediatric palliative care: PACT in action.

High-quality pediatric palliative care should be an expected standard in the United States, especially since the publication of the numerous position statements such as “Precepts of Palliative Care for Children and Adolescents and Their Families,” a joint statement created by the Association of Pediatric Oncology Nurses, the National Association of Neonatal Nurses, and the Society of Pediatric Nurses. Although many barriers still exist, dedicated individuals and teams strive to promote models of excellence and improve care for children with life-threatening conditions and their families. The Pediatric Advanced Care Team, a joint project of Dana-Farber Cancer Institute and Childrens Hospital, Boston, is one such interdisciplinary pediatric palliative care consultation service. Founded in 1997, we have grown and learned from formal study and our extensive clinical work with families, children, and our colleagues. This article describes our journey as an interdisciplinary team forging a new service within two renowned medical institutions in which historically the primary emphasis of care has been on cure and innovation. Although these values remain, our work has resulted in an increased acceptance of balancing treatment of the underlying disease or condition along with treatment of the physical, psychosocial, and spiritual needs of the child and family through life or death. One of our goals is to help promote a balance of hope for cure with hope for comfort, dignity, and integrity for every child and family.

“Yes of Course You can Care for Kids!—Just Need a Little Retooling!” (P16)

Pressure ulcers, malignant, and other chronic wounds have a relatively high prevalence in patients with advanced, life-threatening illnesses, affecting approximately one-third of hospice patients. Both the wound and the sense of being ‘‘wounded’’ can cause considerable suffering for patients, families, caregivers, and members of the healthcare team. During this interactive, hands-on workshop, the presenters will guide participants through the underlying pathophysiology of chronic healable and nonhealable wounds. We will use clinical cases to discuss effective approaches to wound assessment and management, including debridement, cleansing, and moist interactive wound dressings for both healable and nonhealable wounds. Pain, exudate, and odor are distressing symptoms associated with wounds that can be incapacitating and may lead to abandonment of the patient. The workshop will include discussions of the underlying pathophysiology of each of these symptoms, and case-based approaches to their assessment and management, including the use of both systemic and topical antibiotics, analgesics, and anesthetics.