Assessing the Quality of an Online Democratic Deliberation on COVID-19 Pandemic Triage Protocols for Access to Critical Care in an Extreme Pandemic Context: Mixed Methods Study.

Background: Online democratic deliberation (ODD) may foster public engagement in new health strategies by providing opportunities for knowledge exchange between experts, policy makers, and the public. It can favor decision-making by generating new points of view and solutions to existing problems. Deliberation experts recommend gathering feedback from participants to optimize future implementation.

What are the views of Quebec and Ontario citizens on the tiebreaker criteria for prioritizing access to adult critical care in the extreme context of a COVID-19 pandemic?

Background: The prioritization protocols for accessing adult critical care in the extreme pandemic context contain tiebreaker criteria to facilitate decision-making in the allocation of resources between patients with a similar survival prognosis. Besides being controversial, little is known about the public acceptability of these tiebreakers. In order to better understand the public opinion, Quebec and Ontario's protocols were presented to the public in a democratic deliberation during the summer of 2022.

Pediatric palliative care in Canada.

Pediatric palliative care (PPC) emerged during the late 20th century in Canada. It has steadily expanded and there are now programs in every province. Programs adhere to recognized standards of practice at both federal and provincial levels.

Personalized communication with parents of children born at less than 25 weeks: Moving from doctor-driven to parent-personalized discussions.

Communication with parents is an essential component of neonatal care. For extremely preterm infants born at less than 25 weeks, this process is complicated by the substantial risk of mortality or major morbidity. For some babies with specific prognostic factors, the majority die.

The Medical Process in Pregnancy Terminations for Fetal Anomaly: An Analysis of Counselling and Bereavement.

Objectives: Pregnancy termination for fetal anomaly (TOPFA) is a possible outcome of a pregnancy complicated by a fetal anomaly detected during routine prenatal care. Limited research is available on the quality of the counselling offered to women, in terms of enabling them to make an informed decision. The goal of this descriptive cohort study was to examine the medical process offered to a cohort of 151 women who underwent TOPFA in 2018 in a single tertiary mother and child hospital to identify areas for potential quality improvement.

Decision-making and Poor Prognosis: When Death is Silenced by Action.

In the hospital milieu, daily questions relate to highly invested areas such as quality of life and death issues, choices to continue or stop active treatment, and the legitimacy of those who take part in such decisions. Stemming from an ethnographic study carried out in a hematology-oncology transplant unit in a Montreal pediatric hospital, we discuss the decision-making process (or lack thereof) when a patient faces poor prognosis and the change of trajectory from a curative/disease directed to a palliative perspective. The intricate relationship between science, caregiver, and care receiver sustains action even when (near) death is the probable outcome.

Decision-Making in the Era of New Medical Technologies in Pediatric Hematology-Oncology: The Death of Palliative Care?

Background: Recent advances in immunology, genomics, and cellular therapy have opened numerous therapeutic possibilities in pediatric hematology-oncology, generating new hope in poor prognosis situations. How decisions are made when it comes to treatments and aims needs to be explored in this new technologic context. In particular, their impact on the gold standard of early referral to palliative care must be assessed.

A Portrait of Self-Reported Health and Distress in Parents Whose Child Died of Cancer.

Grieving a child following cancer is a substantially difficult task. The objectives of this research were: 1) to describe current quality of life (QoL), psychological distress and symptoms of grief of bereaved parents, and 2) to explore the role of possible contributors of QoL and psychological distress. Forty-six parents (32 mothers) of children who died of cancer were surveyed on their QoL, distress, and complicated grief.

Paediatric palliative care in practice: Perspectives between acute and long-term healthcare teams.

Aim: To explore and compare acute and long-term care professionals' perspectives about paediatric palliative care.

Methods: Focus group interviews were conducted in 2016-2017 with professionals from acute (Emergency Department, Intensive Care Unit) and long-term care (Complex Care Service, Palliative Care) teams.

Results: Fifty-eight participants were enrolled.

Palliative Care in the Pediatric Emergency Department: Findings From a Qualitative Study.

Study Objective: Children with medical complexity represent a fragile population and account for the majority of patients followed in pediatric palliative care. Little is known in regard to the role of the emergency department (ED) in caring for the families of children with medical complexity.

Methods: Semistructured focus groups were held with health care professionals from pediatric emergency medicine, palliative care, complex care, and intensive care to explore their perspective on pediatric palliative care in the ED.

A shared vision of quality of life: Partnering in decision-making to understand families' realities.

Quality of life (QOL) measures are increasingly used when important prognostication and treatment decisions need to be made in the care of a critically ill child. Unfortunately, health-care professionals and families experience difficulties when attempting to accurately predict and estimate QOL for a patient. Aspects such as subjectivity, complexity and adaptation to illness play an important role in how QOL is ultimately experienced.

Resilience Rather than Medical Factors: How Parents Predict Quality of Life of Their Sick Newborn.

Objective: To assess the influence of resiliency and stress on parental perspectives of the future quality of life (QOL) of neonatal intensive care unit (NICU) newborns at high risk of neurodevelopmental disability.

Study Design: We conducted a prospective multicenter questionnaire study. Perspectives from parents of newborns at high risk of disability as per neonatal follow-up criteria were compared with a low-risk group consisting of parents of all other NICU newborns.

Survey highlights the need for specific interventions to reduce frequent conflicts between healthcare professionals providing paediatric end-of-life care.

Aims: This study explored how paediatric healthcare professionals experienced and coped with end-of-life conflicts and identified how to improve coping strategies.

Methods: A questionnaire was distributed to all 2300 professionals at a paediatric university hospital, covering the frequency of end-of-life conflicts, participants, contributing factors, resolution strategies, outcomes and the usefulness of specific institutional coping strategies.

Results: Of the 946 professionals (41%) who responded, 466 had witnessed or participated in paediatric end-of-life discussions: 73% said these had led to conflict, more frequently between professionals (58%) than between professionals and parents (33%).

Antenatal consultations for preterm labour: how are future mothers reassured?

Objective: To evaluate whether the antenatal consultation for preterm labour worries or reassures women, and to identify factors contributing to these feelings.

Design: This is a prospective survey study from April 2012 to September 2013. This mixed-methodology tool was co-constructed with patients and first tested in a single-centre pilot study.

Personalized Decision Making: Practical Recommendations for Antenatal Counseling for Fragile Neonates.

Emphasis has been placed on engaging parents in processes of shared decision making for delivery room management decisions of critically ill neonates whose outcomes are uncertain and unpredictable. The goal of antenatal consultation should rather be to adapt to parental needs and empower them through a personalized decision-making process. This can be done by acknowledging individuality and diversity while respecting the best interests of neonates.

The 'ouR-HOPE' approach for ethics and communication about neonatal neurological injury.

Predicting neurological outcomes of neonates with acute brain injury is an essential component of shared decision-making, in order to guide the development of treatment goals and appropriate care plans. It can aid parents in imagining the child's future, and guide timely and ongoing treatment decisions, including shifting treatment goals and focusing on comfort care. However, numerous challenges have been reported with respect to evidence-based practices for prognostication such as biases about prognosis among clinicians.

Personalized Antenatal Consultations for Preterm Labor: Responding to Mothers' Expectations.

Objective: To explore prospective mothers' perspectives regarding antenatal consultations by neonatology teams for threatened preterm delivery.

Study Design: In a prospective multicenter study, women at risk of preterm delivery between 26 and 32 weeks of gestational age were surveyed during the 72 hours following their antenatal consultation. The questionnaire used was developed and validated during a single-center study.

Focusing on relationships, not information, respects autonomy during antenatal consultations.

Unlabelled: Policy statements regarding antenatal consultations for preterm labour are guided by physicians' concerns for upholding the legal doctrine of informed consent, through the provision of standardised homogeneous medical information. This approach, led by classical in-control conceptions of patient autonomy, conceives moral agents as rational, independent, self-sufficient decision-makers. Recent studies on these antenatal consultations have explored patients' perspectives, and these differ from guidelines' suggestions.

Establishment of the Relationship Between Fathers and Premature Infants in Neonatal Units.

Background: Parents and their preterm infants (born between 32-37 weeks of gestation) are often overlooked by the healthcare system. And very little attention is given to the relationship parents develop with their infants in the neonatal unit (NNU). Specifically, very few studies focused on fathers and how they establish a relationship with their infants.

[THE APPLICATION OF AN INTEGRATED MODEL OF PARTNERSHIP- PATIENT IN THE PROFESSIONALS OF THE HEALTH TRAINING: TOWARDS NEW ONE HUMANIST PARADIGM AND ETHICS OF CO-CONSTRUCTION KNOWLEDGES IN HEALTH].

This article presents the "Montreal model", offering the patient, if he wishes, to become a patient partner for all the decisions that concerns him. We are presently witnessing, presently, major transformations in western societies. Chronic diseases affect a growing proportion of the population, leading a transition from the ascendancy of acute care to an ascendancy of chronic care.