Children dying of cancer are receiving a higher standard of care than ever before, a new study reports, but researchers are urging specialists to continue raising the bar. “There has been an improvement, but it’s really important that we don’t accept the status quo,” lead author Joanne Wolfe, MD, from the Dana-Farber Cancer Institute in Boston, Massachusetts, told Medscape Oncology. Her group’s work appears in the April 1 issue of the Journal of Clinical Oncology.
The study shows that children with terminal cancer are receiving care that is more consistent with optimal palliative care. As a result, parents report children are suffering less.
“Historically, there has been resistance to palliative care and hospice care in the United States, in part because some people feel that the use of these services is associated with hopelessness and giving up,” Dr. Wolfe said in a news release. “This is changing, however, as more people — caregivers, patients, and families alike — become familiar with the goal of these services, which is to help each patient live the best possible life.”
The researchers suggest that palliative care services are associated with enhanced communication between families and caregivers, improved symptoms management, and better quality of life for children dying of cancer.
Substantial Suffering Calls for Better Palliative Care
Over the past decade, studies have documented substantial suffering in children dying of cancer. Among the studies is a report by Dr. Wolfe and her team exploring the experience of children who died of cancer between 1990 and 1997 (N Engl J Med. 2000;342:326-333).
They found that children suffered greatly and that communication with parents was often deficient. The need for extensive improvements in the care of children with advanced illness has also been confirmed by other work.
Spurred on in part by the publication of these studies, international attention has focused on end-of-life quality of care both for adults and children with cancer. This latest retrospective study involved surveying parents and reviewing the medical records of 119 children cared for at Dana-Farber and the Children’s Hospital.
Investigators compared these data with the findings from their last parent survey and medical-records review of 102 children who had died. The goal of the study was to determine whether greater focus on palliative care would affect patterns of care, planning, and patients’ quality of life.
The researchers observed notable changes in the patterns of care. They saw a 40.7% increase in documented discussions about home or hospice care in the follow-up study. A resounding 76% of medical records included a note that palliative care options were discussed with the family (this number was up from 54% in the previous study).
There also was a 16.4% increase in do-not-resuscitate orders. The proportion of children who died at home remained similar between the 2 studies, but in the second study, there was a 42.1% decrease in the number of children who died in the intensive care unit.
The follow-up study showed that children were as likely to experience fatigue, pain, shortness of breath, or anxiety. But patients reportedly suffered less from the symptoms, with the exception of fatigue, which remained a major problem.
Fatigue Important Source of Suffering and Often Not Addressed
“Fatigue causes a high degree of suffering,” Dr. Wolfe emphasized to Medscape Oncology. “It doesn’t tend to receive as much attention as it should, but it is a multifactorial problem that needs to be addressed more.”
Dr. Wolfe said her institution cares for children and their families using an interdisciplinary approach that typically attends to the physical, spiritual, and social aspects of care. Doctors and nurses work in conjunction with social workers and chaplains to care for the whole patient and his or her family.
The findings from the group’s first study prompted caregivers and administrators at Dana-Farber and the Children’s Hospital to identify new ways to help patients with life-threatening illnesses. This led to the establishment of the pediatric advanced care team (PACT). The primary goal is to help children live as well as possible for as long as possible.
The interdisciplinary palliative care service seeks to improve communication, symptom control, and quality of life in children with advanced cancer. An indepth description of PACT activities was published just last year (MCN Am J Matern Child Nurs. 2007;32:279-287).
A number of major pediatric centers throughout North America have recently implemented programs with components similar to PACT. The researchers point out that the field of hospice and palliative medicine has gained formal recognition, and subspecialty training and certification is now being sponsored by 10 specialty boards of the American Board of Medical Specialties, including pediatrics.
Growing Number of Pediatric Centers Adopting New Approaches
“With time,” they write, “and a growing academic community, pediatric palliative care experts will promote the evaluation and development of more targeted interventions to further ease suffering in children with cancer at the end of life.”
Dr. Wolfe pointed to a number of innovations, such as the comfort corner, a homelike suite in the hospital with a queen-size family bed. Families can benefit from more space and be together. “It’s important to be flexible and consider what is best for each individual family,” Dr. Wolfe said.
She pointed to a number of limitations to the new study, including its retrospective design. The work might have also been limited by selection bias. Families that opted out of the study or whose doctor denied access could have had worse outcomes than those enrolled. “However,” the researchers note in their paper, “both the baseline and follow-up surveys had a similar proportion of nonresponders (29% for both cohorts) and therefore we believe the cohorts remain comparable.”
They conclude: “Our results suggest that increased focus on the palliative care needs of children with advanced cancer and their families creates an environment that fosters significantly improved end-of-life care, with parents reporting better preparedness for the end-of-life course and decreased suffering in their children, as well as substantial improvements in advanced care planning.”
Reviewed by Dr. Ramaz Mitaishvili
