Medical Assistance in Dying in Canada: An Ethical Analysis of Conscientious and Religious Objections

Article

Medical Assistance in Dying in Canada: An Ethical Analysis of Conscientious and Religious Objections

Article

Disorder and disconnection: parent experiences of liminality when caring for a dying child

Parents caring for a child with a life threatening or life limiting illness experience a protracted and largely unknown journey, as they and their child oscillate somewhere between life and death. Using an interpretive qualitative approach, interviews were conducted with parents (n = 25) of children who had died. Findings reveal parents’ experiences to be characterised by personal disorder and transformation as well as social marginalisation and disconnection. As such they confirm the validity of understanding these experiences as, fundamentally, one of liminality, in terms of both individual and collective response. In dissecting two inter-related dimensions of liminality, an underlying tension between how transition is subjectively experienced and how it is socially regulated is exposed. In particular, a structural failure to recognise the chronic nature of felt liminality can impede parents’ effective transition.

An Ex Vivo Model for Studying Hepatic Schistosomiasis and the Effect of Released Protein from Dying Eggs

BACKGROUND: We report the use of an ex vivo precision cut liver slice (PCLS) mouse model for studying hepatic schistosomiasis. In this system, liver tissue is unfixed, unfrozen, and alive for maintenance in culture and subsequent molecular analysis.

METHODS AND FINDINGS: Using thick naive mouse liver tissue and sterile culture conditions, the addition of soluble egg antigen (SEA) derived from Schistosoma japonicum eggs, followed 4, 24 and 48 hrs time points. Tissue was collected for transcriptional analysis and supernatants collected to quantitate liver enzymes, cytokines and chemokines. No significant hepatotoxicity was demonstrated by supernatant liver enzymes due to the presence of SEA. A proinflammatory response was observed both at the transcriptional level and at the protein level by cytokine and chemokine bead assay. Key genes observed elevated transcription in response to the addition of SEA included: IL1-α and IL1-β, IL6, all associated with inflammation. The recruitment of antigen presenting cells was reflected in increases in transcription of CD40, CCL4 and CSF1. Indications of tissue remodeling were seen in elevated gene expression of various Matrix MetalloProteinases (MMP3, 9, 10, 13) and delayed increases in TIMP1. Collagen deposition was significantly reduced in the presence of SEA as shown in COL1A1 expression by qPCR after 24 hrs culture. Cytokine and chemokine analysis of the culture supernatants confirmed the elevation of proteins including IL6, CCL3, CCL4 and CXCL5.

CONCLUSIONS: This ex vivo model system for the synchronised delivery of parasite antigen to liver tissue provides an insight into the early phase of hepatic schistosomiasis, corresponding with the release of soluble proteins from dying schistosome eggs.

Caring for Children Dying from Cancer at Home: a Qualitative Study of the Experience of Primary Care Practitioners

Background. The rarity of childhood cancers makes providing palliative care in the community an unusual event for primary care practitioners. Providing this care requires effective interprofessional collaboration with the team that forms to provide the care often working together for the first and only time. Objective. To explore the experiences of primary care practitioners following their involvement in the palliative care of a child with cancer at home. Methods. The study design was a community-based qualitative study. The study location was the West Midlands region. Purposeful sample of GPs and community nurses involved in providing palliative care to 12 children. One-to-one in-depth interviews with 47 primary care professionals (10 GPs and 37 community nurses) and 5 facilitated case discussions were undertaken. Field notes were documented and grounded theory data analysis undertaken: chronological comparative data analysis identifying generated themes. Results. GPs had minimal input into the preceding care of children undergoing treatment for cancer but sought to re-establish their role at the child’s transition to palliative care. GPs felt they had a role to play and could add value to this phase of care, highlighted their continuing role with the child’s family and acknowledged that they had gained from the experience of contributing. However, lack of specialist knowledge and uncertainty about their role within the team made this more challenging. In contrast, community nurses were routinely involved in both active treatment and palliation care phases. There was little evidence of collaboration between the specialist and primary care professionals involved. There was considerable variation in out of hours provision across cases. Conclusions. Engaging primary care practitioners needs to be more actively anticipated and negotiated at the transition to palliation. Variation in out of hours care is another cause for concern. Enhancing inter-professional collaboration and planning during both active and palliative care phases may help. Keywords. Cancer, family medicine, palliative care, paediatric.

Nursing care for the families of the dying child/infant in paediatric and neonatal ICU: Nurses’ emotional talk and sources of discomfort. A mixed methods study

BACKGROUND: The majority of in-hospital deaths of children occur in paediatric and neonatal intensive care units. For nurses working in these settings, this can be a source of significant anxiety, discomfort and sense of failure.

OBJECTIVES: The objectives of this study were to explore how NICU/PICU nurses care for families before and after death; to explore the nurses' perspectives on their preparedness/ability to provide family care; and to determine the emotional content of language used by nurse participants.

METHODS: Focus group and individual interviews were conducted with 22 registered nurses from neonatal and paediatric intensive care units of two major metropolitan hospitals in Australia. All data were audio recorded and transcribed verbatim. Transcripts were then analysed thematically and using Linguistic Inquiry to examine emotional content.

RESULTS: Four core themes were identified: preparing for death; communication challenges; the nurse-family relationship and resilience of nurses. Findings suggested that continuing to provide aggressive treatment to a dying child/infant whilst simultaneously caring for the family caused discomfort and frustration for nurses. Nurses sometimes delayed death to allow families to prepare, as evidenced in the Linguistic Inquiry analysis, which enabled differentiation between types of emotional talk such as anger talk, anxiety talk and sadness talk. PICU nurses had significantly more anxiety talk (p=0.018) than NICU nurses.

CONCLUSION: This study provided rich insights into the experiences of nurses who are caring for dying children including the nurses' need to balance the often aggressive treatments with preparation of the family for the possibility of their child's death. There is some room for improvement in nurses' provision of anticipatory guidance, which encompasses effective and open communication, focussed on preparing families for the child's death.

Something normal in a very, very abnormal environment – Nursing work to honour the life of dying infants and children in neonatal and paediatric intensive care in Australia

The majority of deaths of children and infants occur in paediatric and neonatal intensive care settings. For nurses, managing an infant/child's deterioration and death can be very challenging. Nurses play a vital role in how the death occurs, how families are supported leading up to and after the infant/child's death. This paper describes the nurses' endeavours to create normality amidst the sadness and grief of the death of a child in paediatric and neonatal ICU. Focus groups and individual interviews with registered nurses from NICU and PICU settings gathered data on how neonatal and paediatric intensive care nurses care for families when a child dies and how they perceived their ability and preparedness to provide family care. Four themes emerged from thematic analysis: (1) respecting the child as a person; (2) creating opportunities for family involvement/connection; (3) collecting mementos; and (4) planning for death. Many of the activities described in this study empowered parents to participate in the care of their child as death approached. Further work is required to ensure these principles are translated into practice.