Linda L. Oakes

End-of-Life Care Preferences of Pediatric Patients With Cancer

PURPOSE The viewpoint of the terminally ill child at the time of an end-of-life decision has not been formally investigated. We identified the preferences of children and adolescents with advanced cancer about their end-of-life care and the factors that influenced their decisions. PATIENTS AND METHODS Pediatric patients 10 or more years of age were interviewed within 7 days of participating in one of the following three end-of-life decisions: enrollment onto a phase I trial (n = 7), adoption of a do not resuscitate order (n = 5), or initiation of terminal care (n = 8). The patient, a parent, and the primary pediatric oncologist were interviewed separately by using open-ended interview questions. RESULTS Twenty patients, aged 10 to 20 years (mean, 17 years and 4 months), with a refractory solid tumor (n = 12), brain tumor (n = 4), or leukemia (n = 4) participated. Eighteen patients (90%) accurately recalled all of their treatment options and identified their own death as a consequence of their decision. The factors that were most frequently identified included the following: for patients, caring about others (n = 19 patients); for parents, the childs preferences (n = 18 parents); and for physicians, the patients prognosis and comorbid conditions (n = 14 physicians). CONCLUSION These children and adolescents with advanced cancer realized that they were involved in an end-of-life decision, understood the consequences of their decision, and were capable of participating in a complex decision process involving risks to themselves and others. The decision factors most frequently reported by patients were relationship based; this finding is contrary to existing developmental theories.

American Society for Pain Management Nursing guidelines on monitoring for opioid-induced sedation and respiratory depression.

As the complexity of analgesic therapies increases, priorities of care must be established to balance aggressive pain management with measures to prevent or minimize adverse events and to ensure high quality and safe care. Opioid analgesia remains the primary pharmacologic intervention for managing pain in hospitalized patients. Unintended advancing sedation and respiratory depression are two of the most serious opioid-related adverse events. Multiple factors, including opioid dosage, route of administration, duration of therapy, patient-specific factors, and desired goals of therapy, can influence the occurrence of these adverse events. Furthermore, there is an urgent need to educate all members of the health care team about the dangers and potential attributes of administration of sedating medications concomitant with opioid analgesia and the importance of initiating rational multimodal analgesic plans to help avoid adverse events. Nurses play an important role in: 1) identifying patients at risk for unintended advancing sedation and respiratory depression from opioid therapy; 2) implementing plans of care to assess and monitor patients; and 3) intervening to prevent the worsening of adverse events. Despite the frequency of opioid-induced sedation, there are no universally accepted guidelines to direct effective and safe assessment and monitoring practices for patients receiving opioid analgesia. Moreover, there is a paucity of information and no consensus about the benefits of technology-supported monitoring, such as pulse oximetry (measuring oxygen saturation) and capnography (measuring end-tidal carbon dioxide), in hospitalized patients receiving opioids for pain therapy. To date, there have not been any randomized clinical trials to establish the value of technologic monitoring in preventing adverse respiratory events. Additionally, the use of technology-supported monitoring is costly, with far-reaching implications for hospital and nursing practices. As a result, there are considerable variations in screening for risk and monitoring practices. All of these factors prompted the American Society for Pain Management Nursing to approve the formation of an expert consensus panel to examine the scientific basis and state of practice for assessment and monitoring practices for adult hospitalized patients receiving opioid analgesics for pain control and to propose recommendations for patient care, education, and systems-level changes that promote quality care and patient safety.

End-of-life decision making by adolescents, parents, and healthcare providers in pediatric oncology: research to evidence-based practice guidelines.

Participating in end-of-life decisions is life altering for adolescents with incurable cancer, their families, and their healthcare providers. However, no empirically developed and validated guidelines to assist patients, parents, and healthcare providers in making these decisions exist. The purpose of the work reported here was to use three sources (the findings of three studies on decision making in pediatric oncology, published literature, and recommendations from professional associations) to develop guidelines for end-of-life decision making in pediatric oncology. The study designs include a retrospective, descriptive design (Study 1); a prospective, descriptive design (Study 2); and a cross-sectional, descriptive design (Study 3). Settings for the pediatric oncology studies included a pediatric catastrophic illness research hospital located in the Midsouth (Studies 1 and 2); and that setting plus a children’s hospital in Australia and one in Hong Kong (Study 3). Study samples included 39 guardians and 21 healthcare providers (Study 1); 52 parents, 10 adolescents, and 22 physicians (Study 2); and 43 parents (Study 3). All participants in the studies responded to six open-ended questions. A semantic content analysis technique was used to analyze all interview data. Four nurses independently coded each interview; interrater reliability per code ranged from 68% to 100% across studies. The most frequently reported influencing factors were “information on the health and disease status of the patient,” “all curative options having been attempted,” “trusting the healthcare team,” and “feeling support from the healthcare provider.” The agreement across studies regarding influencing factors provides the basis for the research-based guidelines for end-of-life decision making in pediatric oncology. The guidelines offer assistance with end-of-life decision making in a structured manner that can be formally evaluated and individualized to meet patient and family needs.

“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.

The Safety of Patient-controlled Analgesia by Proxy in Pediatric Oncology Patients

Between February 1999 and December 2003, we studied the use of patient-controlled analgesia (PCA) to control pain in 1011 children and young adults with cancer, by evaluating 4972 24-h periods of PCA usage, 576 of which involved PCA by proxy. Selection of patients for PCA by proxy was based on younger age group, neuromuscular limitation, expectation of repeated painful procedures, and terminal disease. We measured the incidence of respiratory and neurological complications related to the use of PCA. Major complications were observed during 70 of the 4972 24-h observations, with 28 of 4972, or 0.56%, involving respiratory complications, 35 of 4972, or 0.7%, involving neurological complications, and 7 of 4972 24-h observations, or 0.14%, involving both respiratory and neurological complications. In the PCA by proxy group, two respiratory complications and two neurological complications were observed. Reversal of opioid-related respiratory or neurological effects with naloxone was required in three instances, two in the standard PCA group and one in the PCA by proxy group. Recommendations to ensure continuing safety include careful patient selection, education of proxy users, appropriate documentation, and institutional guidelines.

An Institutional Quality Improvement Initiative for Pain Management for Pediatric Cancer Inpatients

Health care institutions must use the principles of quality improvement to demonstrate appropriate assessment and effective management of pain. Here, we describe the quality improvement initiative implemented at our pediatric institution to improve the quality of pain management. We conducted chart audits for the previous 24 hours during which patients received inpatient care. Over six years, 2,478 charts were audited for 87 24-hour periods (average 1.2 days/month) to answer the following: (1) Was pain intensity assessed as per the institutional pain standard of care, (2) What proportion of audited inpatients had significant pain (>or=5/10), and (3) When significant pain (>or=5/10) occurred, was treatment effective (pain score <or=4/10) within one hour of an intervention? Data were analyzed for quarterly time periods (n=24). Compliance with pain assessment guidelines improved from 77% initially to consistently greater than 90%. The mean proportion of patients with significant pain each quarter was 21%. Sixty-six percent of patients with significant pain had pain treated effectively within one hour of intervention. Lack of documentation of pain reassessment within one hour of the intervention was consistent throughout the study period (overall frequency 22%). Comprehensive pain management guidelines have been established. Leaders of health care organizations need to provide the support and resources needed to incorporate these guidelines and standards into institutional culture. We present a simple quality improvement approach to patient care that can be modified to fit the unique aspects of other institutions.

Parent-controlled PCA for pain management in pediatric oncology: Is it safe?

Patient-controlled analgesia offers safe and effective pain control for children who can self-administer medication. Some children may not be candidates for patient-controlled analgesia (PCA) unless a proxy can administer doses. The safety of proxy-administered PCA has been studied, but the safety of parent-administered PCA in children with cancer has not been reported. In this study, we compare the rate of complications in PCA by parent proxy versus PCA by clinician (nurse) proxy and self-administered PCA. Our pediatric institution’s quality improvement database was reviewed for adverse events associated with PCA from 2004 through 2010. Each PCA day was categorized according to patient or proxy authorization. Data from 6151 PCA observation days were included; 61.3% of these days were standard PCA, 23.5% were parent-proxy PCA, and 15.2% were clinician-proxy PCA days. The mean duration of PCA use was 12.1 days, and the mean patient age was 12.3 years. The mean patient age was lower in the clinician-proxy (9.4 y) and parent-proxy (5.1 y) groups, respectively. The complication rate was lowest in the parent-proxy group (0.62%). We found that proxy administration of PCA by authorized parents is as safe as clinician administered and standard PCA at our pediatric institution.

Continuous epidural anesthesia for postoperative analgesia in the pediatric oncology patient

When compared with conventional techniques, epidural anesthesia not only provides improved analgesia, but also has several beneficial effects on the postoperative respiratory, cardiovascular, and metabolic status of the patient. Although the efficacy of this technique in children has been demonstrated, extensive experience in the pediatric oncology patient has not been previously reported. We retrospectively reviewed our 2-year experience with epidural analgesia and discuss the techniques involved in implementing this service for the pediatric oncology patient. An epidural catheter was successfully placed in 58 of 60 patients (97%) who ranged in age from 4 months to 19 years and in weight from 4.1 to 68 kg. Postoperative analgesia was provided by a continuous infusion of a bupivacaine/fentanyl mixture, supplemented with intermittent epidural fentanyl by bolus dose as needed. No complications related to epidural catheters were noted. Our review supports the efficacy of this technique for providing postoperative analgesia after various major surgical procedures in the pediatric oncology patient.

The Natural Connection: The Clinical Nurse Specialist and Bedside Nursing Research

THE EDUCATIONAL PREPARATION and consistent clinical focus of CNSs position them ideally for conducting research at the bedside and helping staff nurses see the relevance of such research. Our research studies have identified a new category of clinical nursing research termed bedside nursing research. Like its parent category of clinical nursing research, the function of bedside nursing research is to generate new knowledge or validate and expand previously generated knowledge. Characteristics that distinguish bedside nursing research from other forms of clinical nursing research are: focus, idea stimulus and setting, originator of the research question, relationship with theory, sensitivity to changing technology in health care, and impact on nursing practice. To illustrate to nature and outcome of this type of research, we describe three bedside nursing research studies conducted by CNSs in a pediatric oncology setting. These studies assessed:(1) the effects of chest tube stripping on the incidence of pain, fever, and pulmonary complication; (2)the relative safety and efficacy of techniques for blood sampling from Hickman catheters; and (3)the effects of infusion method on quality and survival of transfused platelets. The impact of these studies of hospital practices is reviewed.

The Safety of Concurrent Administration of Opioids via Epidural and Intravenous Routes for Postoperative Pain in Pediatric Oncology Patients

Supplementation of epidural opioid analgesia with intravenous opioids is usually avoided because of concern about respiratory depression. However, the choice of adjunct analgesic agents for pediatric oncology patients is limited. Antipyretic drugs may mask fever in neutropenic patients, and nonsteroidal anti-inflammatory agents may exert antiplatelet effects and interact with chemotherapeutic agents. We examined the safety of concurrent use of epidural and intravenous opioids in a consecutive series of 117 epidural infusions in pediatric patients and compared our findings to those reported by other investigators. We observed a 0.85% rate of clinically significant respiratory complications. The single adverse event was associated with an error in dosage. In our experience, the supplementation of epidural opioid analgesia with intravenous opioids has been a safe method of postoperative pain control for pediatric patients with cancer.