Parents whose children are dying of cancer may consider hastening the process

In a study of 141 parents whose children have died of cancer, more than 10 percent reported that they considered hastening their child's death, especially if the child was in pain, according to a report in the March issue of Archives of Pediatrics & Adolescent Medicine, one of the JAMA/Archives journals. The article is one of several in the issue focusing on childhood cancers, and is being published in conjunction with a JAMA theme issue on cancer. The March issues of Archives of Neurology, Archives of Internal Medicine, Archives of Ophthalmology, Archives of Dermatology, Archives of Surgery, Archives of Facial Plastic Surgery and Archives of Otolaryngology–Head & Neck Surgery will also publish articles on this theme.

In one article, Veronica Dussel, M.D., M.P.H., of the Dana Farber Cancer Institute and Children's Hospital, Boston, and colleagues interviewed 141 parents of children who had died of cancer between 1990 and 1999. In addition to discussing their own child's life and death, the parents were asked to respond to a series of vignettes portraying children with end-stage cancer.

A total of 19 of 141 parents (13 percent) reported that they had considered requesting that their children's death be hastened and 9 percent had discussed it. Consideration of hastening death appeared to increase as the child's reported pain increased; about one-third (34 percent) of parents said that they would have considered hastening death had their child been in uncontrollable pain. In response to vignettes, half of parents endorsed hastening death, whereas 94 percent endorsed intensive pain management.

"If physical suffering is identified, our results suggest that parents are willing to have an open discussion about existing options including effective and legal alternatives such as proportionately intensive symptom management and palliative sedation. Desires for hastened death may represent an exit plan to be used if no other alternatives are recognized," the authors conclude. "Attention to pain and suffering and education about intensive symptom management may mitigate consideration of hastening death among parents of children with cancer."

(Arch Pediatr Adolesc Med. 2010;164[3]:231-237. Available pre-embargo to the media at www.jamamedia.org. To contact corresponding author Joanne Wolfe, M.D., M.P.H., call Bill Schaller at 617-632-5357 or e-mail william_schaller@dfci.harvard.edu. )

Other studies featured in this issue include the following:

Clinical Trial Participation Alone May Not Be Associated With Improved Outcomes for Childhood Cancer Patients

Children with the most common childhood cancer did not experience improved outcomes from participating in a clinical trial between 1997 and 2005. Carl Koschmann, M.D., and colleagues at the University of Washington and Seattle Children's Hospital studied 322 patients with newly diagnosed acute lymphoblastic leukemia (a cancer involving the white blood cells), approximately half of whom participated in one of several available clinical trial protocols for the disease.

Overall, 79 percent of the patients survived five years without recurrence of their leukemia, with no significant difference between study participants and non-participants (80 percent vs. 77 percent). "Clinical trial participation does not, by itself, lead to improved outcome for pediatric patients with acute lymphoblastic leukemia in the current era," the authors conclude. "Discussions about participation in a clinical trial should focus on improvement of future therapy, not the direct benefit of the research participant."

"Considerable evidence indicates that clinical trials are associated with substantial benefits as measured by both public health and economic gains," writes Steven Joffe, M.D., M.P.H., of the Dana-Farber Cancer Institute, Boston, in an accompanying editorial. "In the modern era, five-year survival rates for children with acute lymphoblastic leukemia are 80 percent to 90 percent. It is likely that these remarkable outcomes owe much not only to the legacy of treatment insights derived from past trials, but also to the happy side effect of improved quality attributable to the existence of a cooperative clinical trials program and infrastructure in the settings in which most children with cancer receive their care."

(Arch Pediatr Adolesc Med. 2010;164[3]:214-217, 293-294. To contact corresponding author Blythe Thomson, M.D., call Teri Thomas at 206-987-5213 or e-mail teri.thomas@seattlechildrens.org. To contact editorial author Steven Joffe, M.D., M.P.H., call Bill Schaller at 617-632-5357 or e-mail william_schaller@dfci.harvard.edu.)

Children and Teens Less Likely Than Young Adults to Die of Non-Hodgkin's Lymphoma

Young adults diagnosed with non-Hodgkin's lymphoma appear to have a higher risk of dying from the disease than do children and teens. Eric Tai, M.D., and colleagues at the Centers for Disease Control and Prevention, Atlanta, assessed survival information from cancer registries from 1992 to 2001 for 2,442 cases of non-Hodgkin's lymphoma (one of the most common cancers among young adults, affecting the white blood cells). This included 987 children and teens age 19 or younger and 1,455 young adults age 20 to 29.

Even after accounting for the subtype of the disease and the stage at diagnosis, young adults were more likely to die compared with children and adolescents. A total of 87 percent of children and teens survived 24 months compared with 79 percent of young adults, and five-year survival rates were 85 percent for children and teens and 75 percent for young adults.

Overall, "our study showed that non-Hodgkin's lymphoma survival has increased over time, with smaller gains made by young adults compared with children and adolescents," the authors conclude. "Increased survival among patients with non-Hodgkin's lymphoma is dependent on timely and appropriate cancer therapy. Therefore, efforts to address survival should include increasing the number of clinical trials for young adults, encouraging them to enroll in these trials and promoting improved access to care for this population."

(Arch Pediatr Adolesc Med. 2010;164[3]:218-224. To contact Eric Tai, M.D., call the CDC Division of Media Relations at 404-639-3286 or e-mail media@cdc.gov.)

Study Explores End-of-Life Experiences of Children With Brain Tumors

Parents and clinicians caring for children with brain tumors may experience significant challenges near the end of life due to the neurologic deterioration that often occurs in these patients. Shayna Zelcer, M.D., F.R.C.P.C., of Children's Hospital, London Health Sciences Center, Ontario, Canada, and colleagues conducted a qualitative analysis of focus group interviews involving 25 parents of 17 children who had died of brain tumors.

The analysis identified three primary themes. The first was that parents described their child's dying path as characterized by progressive neurologic deterioration. Loss of communication ability was a key turning point, and parents coped by striving to maintain normality and finding strength through hope and the resilience of their child. The second theme identified common parental struggles: balancing competing responsibilities and talking with their children about death. The third theme was that parents who wanted their child to die at home faced barriers, including inadequate symptom control, financial and practical hardships and a lack of community support.

"We hope this report will increase the awareness of health care professionals concerning the challenges these families face and the need for anticipatory guidance and education of patients and families early in the course of illness," the authors conclude. (Arch Pediatr Adolesc Med. 2010;164[3]:225-230. To contact Shayna Zelcer, M.D., F.R.C.P.C., call Rachelle Wood at 519-685-8500, ext. 77642, or e-mail Rachelle.wood@lhsc.on.ca.)

Editor's Note: Please see the articles for additional information, including other authors, author contributions and affiliations, financial disclosures, funding and support, etc.

Source: JAMA and Archives Journals