Simone Stenekes

Frequency and self-management of pain, dyspnea, and cough in cystic fibrosis.

Cystic fibrosis (CF) has been transformed from a fatal diagnosis in infancy to a chronic disease of children and young adults. Symptom patterns and disease burden in CF may be shifting to reflect the relatively healthier, older population with the disease. Self-management of symptoms is a hallmark of chronic illness, and yet we do not have a good understanding of how CF patients monitor or manage their symptoms. Children and adults were recruited through clinics in three Canadian provinces. Questionnaires with open-ended and close-ended questions in English and French, designed to assess the frequency, severity, and self-management of pain, breathlessness, and cough, were mailed to all the eligible participants. One hundred twenty-three respondents completed the survey, for a response rate of 64%. Eighty-four percent (103 of 123) of participants reported having pain. They reported an average of 2.1 locations of pain, with headache and abdominal pain most frequently described. Sixty-four percent (76 of 123) of participants reported having breathlessness, and 83% (99 of 123) of participants reported experiencing cough. Sixty-three percent (62 of 99) of participants with cough reported that cough always or sometimes interfered with their sleep. A variety of pharmacological and nonpharmacological treatments were used to manage symptoms. Pain and dyspnea are more common than suspected and a wide variety of pharmacological and nonpharmacological measures are used to treat symptoms. Cough is difficult to assess, but disturbed sleep may be an indicator of cough severity and an important symptom to consider when evaluating the overall burden of illness in those with CF.

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.

A Descriptive Study Evaluating Perinatal Healthcare Providersʼ 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.

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.

I Am Not Dying, I Am Playing Dragon Quest® IX: Learning to Embrace Providing Care in Complex Pediatric Situations (P12) (Advanced)

present with advanced disease. It is tempting to think that any educational intervention will be welcome and have a lasting effect. In fact, educational interventions are not benign and can have negative consequences. This session will present a multiyear strategic approach that has demonstrated building capacity within countries. Components of this approach include a situational analysis, drug availability, bedside educational teaching, and outcomes to be followed.