Brent Powell

“Trying to Be a Good Parent” As Defined By Interviews With Parents Who Made Phase I, Terminal Care, and Resuscitation Decisions for Their Children

PURPOSE When a childs cancer progresses beyond current treatment capability, the parents are likely to participate in noncurative treatment decision making. One factor that helps parents to make these decisions and remain satisfied with them afterward is deciding as they believe a good parent would decide. Because being a good parent to a child with incurable cancer has not been formally defined, we conducted a descriptive study to develop such a definition. METHODS In face-to-face interviews, 62 parents who had made one of three decisions (enrollment on a phase I study, do not resuscitate status, or terminal care) for 58 patients responded to two open-ended questions about the definition of a good parent and about how clinicians could help them fulfill this role. For semantic content analysis of the interviews, a rater panel trained in this method independently coded all responses. Inter-rater reliability was excellent. RESULTS Among the aspects of the definition qualitatively identified were making informed, unselfish decisions in the childs best interest, remaining at the childs side, showing the child that he is cherished, teaching the child to make good decisions, advocating for the child with the staff, and promoting the childs health. We also identified 15 clinician strategies that help parents be a part of making these decisions on behalf of a child with advanced cancer. CONCLUSION The definition and the strategies may be used to guide clinicians in helping parents fulfill the good parent role and take comfort afterward in having acted as a good parent.

Cancer-Related Symptoms Most Concerning to Parents During the Last Week and Last Day of Their Child's Life

OBJECTIVE. Studies of symptoms in children dying a cancer-related death typically rely on medical chart reviews or parental responses to symptom checklists. However, the mere presence of a symptom does not necessarily correspond with the distress it can cause the childs parents. The purpose of this study was to identify the cancer-related symptoms that most concerned parents during the last days of their childs life and the strategies parents identified as helpful with their childs care. METHODS. Sixty-five parents of 52 children who had died a cancer-related death within the previous 6 to 10 months participated in telephone interviews. Eligibility criteria included being the parent or guardian of a child aged 0 to 21 years who had died within the previous 6 to 10 months after being treated at a pediatric cancer center, having been with their child during the last week of the childs life, speaking English, being willing to participate, and having access to a telephone. RESULTS. Eighteen symptoms of concern were identified as occurring during their childs final week and final day of life. The most frequently reported symptoms at both times included changes in behavior, changes in appearance, pain, weakness and fatigue, and breathing changes. The proportion of reported symptoms did not differ according to patient gender, disease, or location of death (intensive care, elsewhere in the hospital, or home). The most helpful strategies used by health care professionals to assist the child or parents included giving pain and anxiety medications, spending time with the child or family, providing competent care, and giving advice. CONCLUSIONS. This knowledge can guide professionals in preparing parents for the symptoms that a child imminently dying of cancer is likely to experience and in providing care that will be helpful to parents.

Translating psychosocial research findings into practice guidelines.

Evidence-based practice guidelines are increasingly used by healthcare professionals to guide patient care and effect positive patient outcomes. These guidelines are usually based on laboratory-based parameters and lack the psychosocial dimensions of patient care. The authors describe the process used by a hospital-based interdisciplinary team to successfully develop evidence-based psychosocial guidelines designed to foster hopefulness in pediatric patients with cancer, their families, and their healthcare providers. From these guidelines, 4 clinical care projects were developed and are described in this article.

Communication with Children with Cancer and Their Families Throughout the Illness Journey and at the End of Life

Skillful communication is imperative to the practice of pediatric oncology and pediatric palliative care. Clear, empathic, and individualized communication facilitates trust and relationship building between clinicians, patients, and families, encourages shared decision-making, and affords clinicians a valuable opportunity to integrate goals of care and quality of life into the holistic management plan. In the context of incurable illness, conversation also may serve as a therapeutic intervention itself, enabling clinicians to reframe hope, alleviate suffering, and mitigate complicated bereavement. Moreover, good communication promotes collaborative interdisciplinary care coordination and continuity, enabling the provision of services, resources, and support across various care locations and throughout the illness trajectory. The importance of providing excellent communication to the families of children with high-risk cancer and other life-threatening illnesses has been emphasized by the American Academy of Pediatrics, the Institute of Medicine, multiple national oncology societies, and experts in pediatric oncology and palliative care. This chapter discusses the benefits of providing effective communication at the intersection of pediatric oncology and palliative care and reviews strategies for achieving high-quality communication between clinicians, patients, and families across a spectrum of challenging clinical scenarios. This chapter also highlights common barriers to effective communication and offers strategies to overcome potential roadblocks, incorporating recommendations from a diverse interdisciplinary team of pediatric palliative care experts.