Going home: Clinician perspectives on decision-making in paediatric home mechanical ventilation

What is already known on this topic

What this paper adds

The number of children on home mechanical ventilation is increasing world-wide.^1-4 Improvements in ventilator technology and home ventilation services have allowed these children to be cared for at home.^{5, 6} Clinicians have also become conscious of the impact living in hospital has on childhood development and families, such that home is now widely considered to be a better developmental setting than hospital for ventilator-assisted children.^{1, 5, 7} Residing in hospital limits autonomy and family contact for children.^{8, 9} Furthermore, travelling to and from hospital is time-consuming for families. However, there is limited literature exploring the value of going home for ventilator-assisted children in Australia.¹⁰ Research from Europe and North America has shown that, with adequate support, children on home mechanical ventilation can participate in many activities after going home, including going to school, taking vacations and playing sports.^11-13 However, the need to keep a ventilator on hand and for close supervision may restrict activity for children and create a sense of exclusion among peers.^{11, 14} Caring for a child on home mechanical ventilation also has profound psychosocial implications for families.^{6, 8, 9, 13, 15}

While general guidelines exist for the care of long-term ventilated children, few studies have examined how individual children are selected for home ventilation and managed ongoingly.^{5, 16, 17} The importance of shared decision-making with families is highlighted in the literature.¹⁸ However, what shared decision-making means can vary from clinician to clinician. Surveys of paediatric clinicians have shown disagreement about what the ‘ceiling’ of ventilatory care should be in children with life-limiting disorders.¹⁹ More research is needed to explain these differences of opinion. This study aimed to understand the perspectives of Australian clinicians on the value of going home for children requiring ventilatory support, and the approach of clinicians towards assessing quality of life and decision-making for children requiring home ventilation.

Participant recruitment

Clinicians were eligible to participate if they had had at least 2 years' experience working in a tertiary paediatric home ventilation service in Australia. Recruitment took place from February 2019 to June 2020 in two phases. In phase 1, professional contacts from a single tertiary institution known to the research team were invited to participate. In phase 2, a list of potential participants from four tertiary hospitals was developed by the project director and invitation emails were sent. The sample was expanded by asking those who had already participated for contact details of colleagues who also might be willing to participate. Respiratory and sleep medicine departments in tertiary paediatric hospitals were also directly contacted.

Data collection

This was a qualitative study which used semi-structured interviews to explore participant perspectives. Interviews were conducted in two phases: face-to-face in phase 1 (2019) and via teleconferencing in phase 2 (2020). Participants were asked about their experiences working with home-ventilated children, including decision-making for these children, their quality of life and experience at home. We asked participants to focus on children aged from 0 to 18 years requiring permanent long-term ventilation, either bilevel non-invasive ventilation, or any ventilation modality delivered via tracheostomy. Children needing only continuous positive airway pressure for conditions like obstructive sleep apnoea, or children needing ventilation for only a fixed period, were excluded. All interviews were audio-recorded and transcribed and identifying information was removed to protect participant and patient confidentiality.

Data analysis

Data were analysed using inductive content analysis in which coding categories were derived from the data and not predetermined.²⁰ This method is appropriate for studies with a semi-structured interview format. Coding took place in two steps. First, broad content categories were coded. Second, the text within each category was coded more finely to create subcategories. A word processor was used to compile the transcript data and coding framework. Transcripts were analysed by the same researcher who conducted the interviews. Three transcripts from each dataset were co-coded by the alternate researcher to ensure the consistency of codes. Categories and subcategories were refined through group discussion. All categories from the analysis are reported, and as the concepts originating from both datasets were congruent, they are reported together.

Ethical considerations

This project was approved in 2019 by the Royal Children's Hospital Melbourne Human Research Ethics Committee (RCH HREC Ref. no. 38257). Participants provided informed consent for participation.

Participant characteristics

Twenty-five interviews were conducted with health-care professionals working in paediatric long-term ventilation departments in Australian tertiary hospitals. Ten participants were interviewed in phase 1 (2019) and 15 in phase 2 (2020). There were 7 nurses and 18 doctors from five states in Australia, as shown in Tables 1 and 2. Their experience working within home ventilation ranged from 5 to 35 years.

Although thematic saturation was achieved promptly in both phases of the study due to the consensus of participants on major issues within home ventilation, particularly the need for shared decision-making and the subjective experience for each child and their family, interviews were continued to ensure a broad coverage of specialties and tertiary centres.

Making decisions about initiating or ceasing ventilation

All participants were involved in making decisions for children either already on, or for consideration of long-term ventilation. Participants described that the most significant decision was whether to pursue long-term ventilation or palliation. Most participants adopted the role of ‘medical advocate’, providing information to families about likely prognosis, level of function, and degree of required care from the family, but then stepping back to allow families to make the final decision (see Table 3, Quote 1).

Participants felt that it was most appropriate for families to have the final decision for their child's care in almost all cases (Table 3, Quote 2). However, participants did not always agree with what the families had chosen, and worried about whether they had allowed these children to have a poor quality of life (Table 3, Quote 3).

Although some conditions, such as congenital central hypoventilation syndrome, had a clear clinical course where the benefit of ventilation was obvious, the prognosis in many other conditions which caused complex disability, such as cerebral palsy, was not always clear for clinicians. This made it difficult for clinicians to inform families about what their child's future would look like. This prognostic uncertainty, combined with the family's hope of eventual clinical improvement and the family's guilt about potentially letting their child die, could make it challenging for parents to reach a decision about long-term ventilation (Table 3, Quotes 4 and 5).

In most cases, clinicians stated that they were able to reach what they felt was a mutual decision with families, in which any disagreements could be managed through further education and discussion. In rare cases, families pushed for ventilation for children when clinicians thought it was clinically inappropriate. Clinicians usually sought the advice of their hospital ethics departments in these circumstances, but generally found that the hospital would side with families wanting to pursue ventilation (Table 3, Quotes 6 and 7).

Considering quality of life

Participants felt that the aim of ventilation should be to improve quality of life, not solely extend it (Table 4, Quote 1). Participants noted common characteristics among children who they did see as having good quality of life, such as bonding and love from their family, ability to set goals and accomplishments, sense of normality and ownership, and engagement within the community (Table 4, Quote 2).

Participants found that priorities between health-care professionals and families did not always align. Some clinicians felt families pursued home ventilation as a means of survival for their child, whereas clinicians advocated for ventilation as a tool to improve quality of life (Table 4, Quotes 3 and 4).

Participants conceded that judging someone's quality of life is challenging because it is both subjective to the person and their family and difficult to define (Table 4, Quote 5). Clinicians tended to adopt a non-directive approach towards quality of life discussions with families. Some participants stated that it was up to the family to assess what quality of life for their child meant for them based on their own values (Table 4, Quote 6).

Life at home

Participants explained that going home with a family to support them was the only appropriate environment for these children. They felt that going home gave children the opportunity to participate in their community, attend school, and spend time with family, while allowing parents to resume a more normal routine uninterrupted by regular visits to hospital, including returning to work and caring for their other children (Table 5, Quote 1).

Despite this, participants made it clear that life at home with a long-term ventilated child is challenging and comes at significant costs. Home care sometimes meant that the child's quality of life would improve but the family would struggle with the burden of care. Most participants discussed the initial sense of intrusion parents experienced with home-visiting carers. Clinicians emphasised that caring for a child on home ventilation is a significant responsibility for families, impacts relationships, and changes the meaning of home for families (Table 5, Quote 2).

The expectation among all participants was that families who chose to initiate ventilation for their child would eventually take over care of their child at home. Foster care was seen as a last resort in the event of difficult family circumstances or abandonment. A few clinicians commented that ‘institutions’ or residential care were poor places for children to develop; hence they largely no longer exist (Table 5, Quotes 3 and 4).

Participants found it difficult preparing families for what life was going to look like caring for their child at home (Table 5, Quote 5). Participants also found that they were sometimes surprised with the positive progress that children had made. They found it difficult to predict which families would cope well with home ventilation (Table 5, Quote 6).

In one case described by multiple clinicians, the family of a child with locked-in syndrome had pushed for ventilation to be initiated, but subsequently declined to take their child home. Most participants involved in this case felt this was a negative outcome for the child. Other rare negative outcomes mentioned included circumstances of family neglect and disengagement, breakdown of families and marital relationships, compulsory removal of children from their family home, and death of the child. Hence, clinicians highlighted the importance of preparing families appropriately for the transition to home ventilation.