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. OBJECTIVES: (1) To explore the perspectives of Quebec and Ontario citizens regarding tiebreakers, identifying the most acceptable ones and their underlying values. (2) To analyze these results considering other public consultations held during the pandemic on these criteria. METHODS: This was an exploratory qualitative study. The design involved an online democratic deliberation that took place over two days, simultaneously in Quebec and Ontario. Public participants were selected from a community sample which excluded healthcare workers. Participants were first presented the essential components of prioritization protocols and their related issues (training session day 1). They subsequently deliberated on the acceptability of these criteria (deliberation session day 2). The deliberation was then subject to thematic analysis. RESULTS: A total of 47 participants from the provinces of Quebec (n = 20) and Ontario (n = 27) took part in the online deliberation. A diverse audience participated excluding members of the healthcare workforce. Four themes were identified: (1) Priority to young patients - the life cycle - a preferred tiebreaker; (2) Randomization - a tiebreaker of last resort; (3) Multiplier effect of most exposed healthcare workers - a median acceptability tiebreaker, and (4) Social value - a less acceptable tiebreaker. CONCLUSION: Life cycle was the preferred tiebreaker as this criterion respects intergenerational equity, which was considered relevant when allocating scarce resources to adult patients in a context of extreme pandemic. Priority to young patients is in line with other consultations conducted around the world. Additional studies are needed to further investigate the public acceptability of tiebreaker criteria.

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. METHODS: Statistical analysis comprised basic statistical tests, Pearson's χ2 test, and logistic regression. Counselling was evaluated by two fetal health specialists. RESULTS: The counselling process was found to be minimal in 42% of cases. Counselling referrals to pediatric specialists were made in 26% of cases, with many potential explanations for this finding. Complicated bereavement was present in 39% of cases. Risk factors for complicated bereavement were explored and were found to be insufficient social support (odds ratio [OR] 6.5; 95% CI 2.0-21.0, P < 0.001), history of a mood disorder (OR 3.4; 95% CI 1.3-8.8, P < 0.01), and history of another TOPFA (OR 6.2; 95% CI 1.2-31.0, P = 0.01). Viewing the fetus after termination was not correlated with a significant reduction in complicated bereavement. CONCLUSION: The evaluation of the counselling as minimal in 42% of cases and the high prevalence of complicated bereavement call for quality improvement in the process for women who undergo TOPFA. Clinicians should be able to screen women most at risk for complicated bereavement to best orient preventive care.

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. Data were analyzed using multiple linear regression. Parents had a high frequency of grieving symptoms (58%). Mothers reported more retrospective grief symptoms than fathers when describing the year after child death. Current lower mental well-being was associated with experiencing higher retrospective grief symptoms, a shorter period since child death, and being a father. Hence, parents experienced disturbances even long after child death. Mothers and fathers may present specificities that should be considered when developing supportive activities for this vulnerable population.

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. MATERIALS AND METHODS: Stemming from an ethnographic study combining semistructured interviews and observations carried out in a hematopoietic stem cell transplant unit in a Montréal Pediatric Hospital, we discuss the decision-making process when a patient faces poor prognosis. RESULTS AND DISCUSSION: Although health care providers individually envisioned that palliative care may be the best course of action for patients receiving emergent therapy, they remained collectively in the curative mode. The intricate relationship between science, hope, caregiver, and care receiver sustains this perspective even when (near) death is the probable outcome. When proven treatment fails, emerging therapeutic possibilities offer new hope that can delay the referral to the palliative care team.

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 definitions were similar throughout groups: to provide active care early in the illness, focusing on the child as a whole and supporting families. Each group perceived a different role in the patient's illness trajectory, reflecting their own culture of care. They demonstrated important differences in their approach to palliative care. Disagreements regarding when or how to discuss goals of care were expressed. Acute care professionals reported discomfort when having to introduce these discussions for the first time, while long-term care professionals perceived negative judgements about their patients' quality of life by acute care teams during health events. Personalised care, communication with families and continuity of care were thought to be key elements to improve care. CONCLUSION: Paediatric palliative care is well recognised throughout specialties, yet continuity of care is challenged by groups' roles and interventions in a patient's illness. A reflective and mutual clinical approach is needed to improve quality of care and professionals' satisfaction.

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. Data were transcribed and analyzed with NVivo software, and thematic analysis and theoretic sampling were performed. RESULTS: From January to October 2016, 58 participants were interviewed. Difficulties providing pediatric palliative care in the ED are related on the one hand to characteristics specific to the ED, such as its culture and its health care professionals' strong emotional responses when caring for children with medical complexity, and on the other hand to factors extrinsic to the ED; mainly, lack of continuity of care. For critically ill children with unknown goals of care and potential for end of life, professionals in the ED should evaluate the clinical situation, contact known health care teams, remain open to families' preferences, alleviate distressing symptoms, and create a caring environment. Communication between teams is targeted by health care professionals to facilitate and improve patient flow and care. CONCLUSION: Although perspectives differ in regard to how to provide care for pediatric palliative care patients in the ED, several barriers to providing high-quality emergency pediatric palliative care can be overcome.

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. This often leads to inaccurate estimates of QOL, when performed by individuals other than the patient, such as clinicians or family members. In order to make decisions in the best interest of the patient, a partnership between families and clinicians must be fostered, based on communication, trust and mutual understanding of values. This article will attempt to describe some of the challenges that come into play when assessing QOL for a patient and will provide tools for building a clinician-family partnership in the decision-making process.

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. Parental anxiety and resiliency, measured using Brief Symptom Inventory and Sense of Coherence scales, respectively, were associated with QOL projections. RESULTS: Parents returned 129 (81%) questionnaires. Parents considering their newborn as currently sicker were more stressed (P = .011) and worried about future physical (P < .001) and mental (P < .001) health, QOL (P < .001), coping (P = .019), and financial (P < .001) and emotional (P = .002) impact on the family. Ooverall, there was no difference between parents of high-risk and low-risk newborns on QOL projections. Almost all parents projected a good future QOL. Less resilient parents projected more pain (P = .04), more financial (P = .019), and emotional (P = .031) impact on their family, and were 10 times more likely to predict that their newborn would remain chronically ill. CONCLUSIONS: Parental projection of future QOL of NICU newborns is not associated with risk of disability. Most parents predict overall a good future QOL and focus more on familial impact. The Sense of Coherence scale may be used in clinical settings to identify less resilient parents.

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%). Frequent factors included professionals' rotations, unprepared parents, emotional load, unrealistic parental expectations, differences in values and beliefs, parents' fear of hastening death, precipitated situations and uncertain prognosis. Discussions with patients and parents and between professionals were the most frequently used coping strategies. Conflicts were frequently resolved by the time of death. Professionals mainly supported designating one principal physician and nurse for each patient, two-step interdisciplinary meetings - between professionals then with parents - postdeath ethics meetings, bereavement follow-up protocols and early consultations with paediatric palliative care and clinical ethics services. CONCLUSION: End-of-life conflicts were frequent and predominantly occurred between healthcare professionals. Specific interventions could target most of the contributing factors.

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. Additionally, the evaluation or appreciation of living with disability can differ, including the well-known disability paradox where patients self-report a good quality of life in spite of severe disability. Herein, we put forward a set of five practice principles captured in the "ouR-HOPE" approach (Reflection, Humility, Open-mindedness, Partnership, and Engagement) and related questions to encourage clinicians to self-assess their practice and engage with others in responding to these challenges. We hope that this proposal paves the way to greater discussion and attention to ethical aspects of communicating prognosis in the context of neonatal brain injury.

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

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. Relational autonomy - which understands moral agents as rational, emotional, creative and interdependent - resonates impressively with these new data. CONCLUSION: A model for antenatal consultations is proposed. This approach encourages clinicians to explore individual patients' lived experiences and engage in trusting empowering relationships. Moreover, it calls on physicians to enhance patients' relational autonomy by becoming advocates for their patients within healthcare institutions and professional organisations, while calling for broadscale policy changes to encourage further funding and support in investigations of the patient's voice.

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. RESULTS: Over 18 months, 229 mothers completed the survey (73% response rate), at a median gestational age of 30 weeks. Spouses/partners were present for 49% of consultations. Most women (90%) reported a positive experience. They found it important to discuss the outcomes of prematurity (96%), but 39% of them reported receiving too much information. Women wanted their spouse/partner to be present (71%) and wished to discuss parental concerns: their roles as mother of a premature baby (82%), their integration in their baby's care (83%), and a better understanding of the neonatal intensive care unit (NICU) environment, including antenatal NICU visits (69%). The majority (56%) wanted a follow-up consultation: this was less likely if a NICU visit had been offered (P < .001), if their role as decision-maker had been discussed (P < .05), or if the consultation had lasted longer (P = .001). CONCLUSION: Policy statements recommend a standardized approach to providing parents with child-centered information. Although clinicians follow these guidelines, mothers want personalized information focusing on their individual concerns and questions, such as what they can do for their baby, how NICUs work, and the integration of their family.

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. However, we know that the father-infant relationship is extremely important for their future social development and more. PURPOSE: This article presents the results of a qualitative study of the establishment of the father-premature infant relationship in an NNU. METHODS/SEARCH STRATEGY: The study's theoretical framework was Bell's model of the parent-infant relationship, which encompasses discovery, physical proximity, communication, involvement, and emotional attachment. Ten fathers of premature infants (gestational age: 32-37 weeks) participated in 2 semistructured interviews (1 individual and 1 "in situ," ie, at the infant's bedside) during the first week following the premature birth. FINDINGS/RESULTS: The results confirm the emergence of different components of the relationship between fathers and their children from the first days of hospitalization in the NNU. The commitment component is the basis for the development of other components in the relationship with their children. Furthermore, involvement influences the deployment of emotional attachment, discovery, physical proximity, and communication toward premature infants. Similarly, the 5 themes of the model can be seen as forming a dynamic nexus in which each theme influences the others. IMPLICATIONS FOR PRACTICE: For neonatal nurses, this model of the early father-child relationship helps the understanding of the deployment of that relationship according to 5 components. Similarly, it provides awareness of the experiences of fathers so that nurses can be better equipped to support and individualize interventions tailored to their specific needs, thus helping them develop and sustain the relationship with their children. IMPLICATIONS FOR RESEARCH: This study allows us to better understand fathers' experience regarding the establishment of the relationship to their premature infants born between 32 and 37 weeks of gestation. However, there is little understanding about the early paternal experience and more research on this dyad is necessary in neonatology.

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. PPC is recognized by government regulatory bodies and professional associations, including the Canadian Paediatric Society.

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. Although many of these deaths occur after admission to the intensive care unit, position statements have focused on communication during the prenatal consultation. This review takes a more comprehensive approach and covers personalized and parent-centered communication in the clinical setting during three distinct yet inter-related phases: the antenatal consultation, the neonatal intensive care hospitalization, and the dying process (when this happens). We advocate that a 'one-size-fits-all' communication model focused on standardizing information does not lead to partnerships. It is possible to standardize personalized approaches that recognize and adapt to parental heterogeneity. This can help clinicians and parents build effective partnerships of trust and affective support to engage in personalized decision-making. These practices begin with self-reflection on the part of the clinician and continue with practical frameworks and stepwise approaches supporting personalization and parent-centered communication.

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.

Lethal respiratory failure and mild primary hypothyroidism in a term girl with a de novo heterozygous mutation in the TITF1/NKX2.1 gene.

CONTEXT: Thyroid transcription factor 1 (TITF1/NKX2.1) is expressed in the thyroid, lung, ventral forebrain, and pituitary. In the lung, TITF1/NKX2.1 activates the expression of genes critical for lung development and function. Titf/Nkx2.1(-/-) mice have pituitary and thyroid aplasia but also impairment of pulmonary branching. Humans with heterozygous TITF1/NKX2.1 mutations present with various combinations of primary hypothyroidism, respiratory distress, and neurological disorders. OBJECTIVE: The objective of the study was to report clinical and molecular studies of the first patient with lethal neonatal respiratory distress from a novel heterozygous TITF1/NKX2.1 mutation. PARTICIPANT: This girl, the first child of healthy nonconsanguineous French-Canadian parents, was born at 41 wk. Birth weight was 3,460 g and Apgar scores were normal. Soon after birth, she developed acute respiratory failure with pulmonary hypertension. At neonatal screening on the second day of life, TSH was 31 mU/liter (N <15) and total T(4) 245 nmol/liter (N = 120-350). Despite mechanical ventilation, thyroxine, surfactant, and pulmonary vasodilators, the patient died on the 40th day. RESULTS: Histopathology revealed pulmonary tissue with low alveolar counts. The thyroid was normal. Sequencing of the patient's lymphocyte DNA revealed a novel heterozygous TITF1/NKX2.1 mutation (I207F). This mutation was not found in either parent. In vitro, the mutant TITF-1 had reduced DNA binding and transactivation capacity. CONCLUSION: This is the first reported case of a heterozygous TITF1/NKX2.1 mutation leading to neonatal death from respiratory failure. The association of severe unexplained respiratory distress in a term neonate with mild primary hypothyroidism is the clue that led to the diagnosis.