Development and Implementation of a Survey to Assess Health-Care Provider's Competency, Attitudes, and Knowledge About Perinatal Palliative Care.

Perinatal palliative care is an emerging area of health care. To date, no published tools assess health-care provider's knowledge and level of comfort in providing such care. A 2-phase study was undertaken to develop and implement a survey to evaluate the self-assessed competency, attitudes, and knowledge of health-care providers working in perinatal palliative care. Phase 1 included a review of the literature and appraisal of palliative and death-related instruments to inform the initial draft of the Perinatal Palliative Care Survey (PPCS). Twenty-four Canadian pediatric palliative care specialists critiqued the PPCS, establishing its face and content validity. Phase 2 involved administering the PPCS at 4 sites across Canada, resulting in 167 responses from nurses, physicians, and midwives. The majority of participants responded that they possessed a degree of comfort in providing perinatal palliative care, particularly with assessing pain (76%), managing pain (69%), assessing other symptoms (85%), and managing other symptoms (78%). Two areas where participants level of confidence or extreme confidence was diminished included having conversations with families about the possibility of their infant dying (55%) and knowing and accessing community palliative care resources (32%). Responses in the knowledge section identified gaps related to opioid use, pharmacological interventions for breathlessness, pain behaviors, and tolerance developed to opioids and sedatives. Eighty-six percent of respondents stated that if education about palliative care was made available, they would participate with priority topics identified as communication with families (75%), managing symptoms (69%), pain management (69%), and ethical issues (66%). The PPCS provides a useful assessment to determine the educational needs of health-care providers delivering perinatal palliative care.

A descriptive study evaluating perinatal healthcare providers' perspectives of palliative programming in 3 Canadian institutions.

A paucity of research has evaluated the perspectives of the broader healthcare team regarding perinatal palliative care. This study examines the views of healthcare providers involved in perinatal palliative care in 3 tertiary care hospitals in Canada. Developing an understanding of their perspectives of care provision, as well as the interactions that took place with families and other teams while providing perinatal palliative care, was of interest. Twenty-nine healthcare providers were involved in 4 focus groups and 5 individual interviews. Data were transcribed and content analysis was undertaken. The overarching theme of communication materialized from the data. Within this theme were 3 subthemes, each highlighting an aspect of communication that impacted care provision: connecting through proximity, protected time and dedicated space, and flexibility and formality. The study also describes a model of integrated perinatal palliative care program development and explains where each of the 3 sites falls along this continuum. The development of formal programs in these facilities is varied and recommendations are included to enhance communication and assist in providing improved and integrated programming.

Intranasal fentanyl in the palliative care of newborns and infants.

CONTEXT: Perinatal palliative care is an area of increasing focus among clinicians supporting newborns and their families. Although not every newborn will survive the neonatal period, assuring their comfort and quality of life remains an imperative for their care providers. It can be challenging to administer medications such as opioids in a minimally invasive yet effective manner. OBJECTIVES: To describe the experience using intranasal (IN) fentanyl in the management of distress in a case series of 11 dying neonates. METHODS: A retrospective chart review was undertaken of 58 consecutive referrals of newborns and infants aged six months or younger between November 2006 and July 2010 to the Winnipeg Regional Health Authority Pediatric Palliative Care Service to determine how often IN fentanyl was used and review documented responses after the medication. RESULTS: Of 58 referrals, IN fentanyl was used in 11 patients, in all cases for concerns regarding respiratory distress. Chart documentation indicated that fentanyl was tolerated well, with no circumstances of drug-related apnea and no occurrences of chest wall rigidity. In most cases, labored breathing and restlessness settled after medication administration. The average time from administration of the last dose of fentanyl until death was 61 minutes. CONCLUSION: We found IN fentanyl, which can be administered in a variety of care settings, to be a minimally invasive means of palliating distress in dying newborns and infants. No adverse events related to its use were noted.

Methotrimeprazine for the management of end-of-life symptoms in infants and children.

OBJECTIVE: This retrospective chart review assessed the efficacy, dose, and safety of methotrimeprazine in palliating end-of-life symptoms in children and infants. METHODS: A retrospective chart review was conducted of 18 hospitalized pediatric patients who were treated with methotrimeprazine in their last two weeks of life. Data collected included age, diagnosis, symptoms, methotrimeprazine dose, route, efficacy, and any documented adverse effects. RESULTS: Patients' ages ranged from 16 days to 17 years. Underlying conditions included malignancies, trauma, and various neurodegenerative and congenital diseases. All patients (n = 18) were treated for symptoms of agitation, delirium, or restlessness. Most patients also experienced respiratory secretions/congestion (n = 15), pain (n = 13), and/ or dyspnea (n = 9). Less common symptoms included nausea/emesis (n = 5) and spasticity (n = 1). Methotrimeprazine dosages ranged from 0.02 mg/kg/dose to 0.5 mg/kg/dose. Routes of administration included intravenous (n = 13), oral/gastrostomy tube (n = 6), or subcutaneous (n = 4). Sedation (n = 6) was the only documented adverse effect, although when agitation was present, this was potentially an intended and perceived-to-be-beneficial effect. CONCLUSION: Methotrimeprazine, an old drug with diverse receptor activity and multiple routes of administration, appears to be an effective tool in treating complicated end-of-life symptoms in children and infants. This study provides a foundation for analysis with prospective and comparative trials, which may further quantify its benefit.

Sleeping with one eye open: the sleep experience of family members providing palliative care at home.

PURPOSE: To empirically describe the sleep experience of family caregivers (n=13) of advanced cancer patients. METHOD: Mixed methodology using: family interviews; Epworth Sleepiness Scale (ESS); Pittsburgh Sleep Quality Index (PSQI); and actigraphy measurement. Qualitative data analysis utilized constant comparative content techniques. Actiware for the actigraphy data and the Statistical Package for the Social Sciences-15 (SPSS-15) generated descriptive and correlation statistics. FINDINGS: The overarching theme "sleeping with one eye open" captures the vigilant nature of caregivers' sleep experiences. Caregiver narratives were validated by quantitative findings: 5 of the family caregivers (38.5 percent) had an ESS score > or =11 indicative of excessive daytime sleepiness, all caregivers had a PSQI global score >5 indicative of moderate to severe sleep problems, and actigraphy scores--including total sleep time, sleep efficiency, and time awake after sleep onset--fell beyond normal values documented in the literature. CONCLUSION: Impeccable assessment of the patient's and family's sleep status, sleep education, intervention strategies, and high-quality respite services are critical in community-based palliative care.

Family beliefs regarding the nutritional care of a terminally ill relative: a qualitative study.

OBJECTIVE: To develop a conceptual model of family caregiver beliefs and behavior related to nutritional care of the terminally ill by examining the perspectives of family members, patients, and health care providers. DESIGN: Qualitative study using in-depth, open-ended, face to face interviews, participant observation, and content analysis. PARTICIPANTS: A total of 47 participants from 4 groups: hospitalized palliative patients with cancer (n = 13), family members of hospitalized palliative patients with cancer (n = 13), health care providers on a palliative care unit (n = 11), and bereaved family members who had previously experienced the death of a relative on a palliative care unit. OUTCOME MEASURES: Participant views on nutritional care in the terminal phases of illness. RESULTS: There is marked variability in the ways family members respond to a dying cachectic anorexic relative. The overarching theme of "doing what's best" captures this variability and integrates the major categories into the key analytic model emerging from this study. CONCLUSION: We have developed a conceptual model of family beliefs regarding the nutritional care of a hospitalized terminally ill relative. The model has implications for education, practice, and research regarding nutritional care in the palliative care setting.