Intervention familiale visant à faciliter le processus entourant la décision de non-réanimation de leur enfant atteint d'une condition médicale complexe

Travail dirigé présenté à la Faculté des sciences infirmières en vue de l’obtention du grade de Maîtrise ès sciences (M. Sc.) en sciences infirmières, option expertise-conseilL’infirmière joue un rôle clé auprès des parents confrontés au processus entourant la décision de non-réanimation pour leur enfant atteint d’une condition médicale complexe. Malgré le fait que le médecin demeure traditionnellement chargé de prendre la décision de non-réanimation, l’infirmière est dans une position privilégiée afin d’établir une relation thérapeutique centrée sur la famille et ainsi faciliter les discussions menant à cette décision. Afin d’apporter un éclairage supplémentaire sur cette expérience parentale, une recension des écrits théoriques et empiriques a été menée sur le sujet. Une analyse critique des écrits a permis de dégager des stratégies de soutien qui ont inspiré l’élaboration d’une intervention familiale visant à faciliter le processus décisionnel des parents par l’infirmière. Dans une approche holistique et systémique, l’infirmière est appelée à promouvoir une relation de confiance permettant la reconnaissance du rôle parental dans le respect des valeurs de la famille, afin de faciliter ce processus de prise de décision. Des suggestions d’interventions sont proposées tout en favorisant une communication mutuellement perçue comme honnête et claire entre les parents et les soignants.Abstract: The nurse plays a key role in helping parents with the process surrounding the decision to not resuscitate their child who has a complex medical condition. Despite the fact that the physician remains traditionally responsible for taking the do-not-resuscitate decision, the nurse is in a privileged position to establish a therapeutic family-centered relationship and thus facilitate discussions leading to this difficult decision. In order to further shed light on this parenting experience, a review of the theoretical and empirical literature was conducted on this topic. A critical analysis of the literature has identified support strategies that have inspired the development of a nursing family intervention to aid in the parents’ decision-making. Using a holistic and systemic approach, the nurse is called upon to promote a trusting relationship and recognize the parental role, while respecting the family’s values to facilitate the decision process. Interventions are developed that promote communication mutually perceived as honest and clear between parents and caregivers

Clinical Use of an Order Protocol for Distress in Pediatric Palliative Care

Several children receiving palliative care experience dyspnea and pain. An order protocol for distress (OPD) is available at Sainte-Justine Hospital, aimed at alleviating respiratory distress, pain and anxiety in pediatric palliative care patients. This study evaluates the clinical use of the OPD at Sainte-Justine Hospital, through a retrospective chart review of all patients for whom the OPD was prescribed between September 2009 and September 2012. Effectiveness of the OPD was assessed using chart documentation of the patient’s symptoms, or the modified Borg scale. Safety of the OPD was evaluated by measuring the time between administration of the first medication and the patient’s death, and clinical evolution of the patient as recorded in the chart. One hundred and four (104) patients were included in the study. The OPD was administered at least once to 78 (75%) patients. A total of 350 episodes of administration occurred, mainly for respiratory distress (89%). Relief was provided in 90% of cases. The interval between administration of the first protocol and death was 17 h; the interval was longer in children with cancer compared to other illnesses (p = 0.02). Data from this study support the effectiveness and safety of using an OPD for children receiving palliative care