This blog features expert commentaries on recent publications of interest in pediatric palliative care research. Our bloggers provide their personal take on an article chosen from our monthly citation list and discuss how it relates to trends within the field. To view our search strategy, click here.

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Trends in Pediatric Palliative Care 2017; Issue #9

September 6, 2017

Dr. Marie-Claude Grégoire

Featured article: Ringuier B, Troussier F, Boussicault G, Chapotte C, Rachieru P. [Non invasive ventilation and pediatric palliative care. A French survey]. Arch Pediatr. 2017;24(8):712–719. doi: 10.1016/j.arcped.2017.05.007. Epub 2017 Jun 28.

As I looked at the list of articles for the month of September 2017, I realized that not knowing which article to pick among an abundance of interesting articles isn’t necessarily a bad thing. The study by Ringuier et al discusses the use of non-invasive ventilation (NIV) in pediatric palliative care in France, and it caught my attention for many reasons. First, it is a topic that comes up regularly when discussing the long term care of many patients in my clinical practice as a pediatric palliative care physician. In discussions with colleagues from across Canada, I know that our situation is not unique. Second, the paper was published in French. There are many high-quality articles published in languages other than English that too often get missed, so I readily took the opportunity to highlight this one. I will summarize the main findings in lieu of official translation.

The study surveyed 186 clinicians in metropolitan France: pediatric respirologists, palliative care physicians and pediatric intensivists. The main question was: in a situation of acute or chronic respiratory distress, would you consider it “reasonable” to use non-invasive ventilation (NIV) in two groups of children with different goals of care. The first group included children with a “do not intubate” order, and the second group was made up of children with a comfort care only order. Information about the characteristics of the NIV prescription was also collected. The overall response rate was 34%, which is in the usual range for this type of study, although the response rate for the palliative care physicians group was lower (22%).

A majority of specialists surveyed found using NIV reasonable when treating children with a “do not intubate” orders, in both acute and chronic respiratory insufficiency cases. Not surprisingly, a smaller percentage, only about a third of respondents, found it reasonable to use NIV in children with a “comfort measure only” order. The specialists’ responses were very similar when asked about their prescribing experience in similar scenarios with one exception: non-intensivists had prescribed NIV for children with a “do not intubate” order with acute respiratory insufficiency and intensivists, even if both groups considered reasonable the use of NIV. In terms of other treatments offered, oxygen was selected as appropriate for almost all children while morphine and sedating medications were selected more frequently for children with a “comfort measures only” order. As for symptoms, breathlessness was the symptom cited the most frequently as indication for NIV for both groups of children. Of all symptoms listed, only two differed between the two groups: daytime hypercapnia and weight loss were selected more frequently as an indication for NIV in the group with a “do not intubate” order vs. the group with “comfort measures only” order. Finally, the criteria used to assess the efficacy of the NIV were similar in both groups in terms of the increase in comfort; the child and parental satisfaction; the decrease time in hospital; and the diminution of dyspnea the most important ones.

Despite some limitations (for example, not having parents or patients participate in the study) Ringuier et al collected important information that may be generalizable outside of France. The fact that breathlessness was used as the most important indicator for both groups demonstrates that comfort was a key factor in the decision to initiate NIV, in line with the common palliative care approach. This point is an important one for the population of patients we often work with in pediatric palliative care, especially in tertiary care centres. In our experience, many families are looking for a compromise between no ventilation in any form and mechanical ventilation provided in an invasive way (endotracheal or tracheostomy tube), for both acute and chronic respiratory insufficiency. Comfort is often the main family goal, and for some families NIV can be seen as the most comfortable option. The relatively wide range of clinician’s responses in the study may be partially explained by the fact that “comfort”, like “quality of life” is very subjective, multifactorial and individual-dependant. The lack of pediatric dyspnea assessment scales, especially for children who cannot self-report, further complicates the overall comfort assessment of children. Another good reminder from this paper is about the importance of having criteria, ahead of the NIV trial, to decide if the intervention is helpful or not. Too often interventions are started first and outcome measures established second, which changes the level of decision being made from an ethical point of view.

In conclusion, this paper confirmed what clinical experience has already taught us over the years: each intervention, like NIV, can be chosen or not chosen by families or clinicians using the same criterion of comfort. When it comes to establishing goals of care and medical interventions, guidelines help, but open discussion with families are crucial to understanding the multifactorial environment in which the child lives.




What can reported symptoms tell us about caring for children with progressive, non-curable diseases?

June 12, 2015

Olivia Jang

Featured Article: Siden, H. & Steele, R. (2015) Charting the Territory: Children and families living with progressive life-threatening conditions. Paediatrics & Child Health.

Many children who are in pediatric palliative care have life-threatening diseases which are progressive neurological conditions (PNC). These children are typically affected by impaired central nervous system function and experience multiple physical symptoms including pain, seizures, and loss of mobility. Health care providers attempt to prevent and relieve symptoms however, little is known about patterns of symptoms in these rare diseases.

A recent article from our Charting the Territory study used clinical data collected over time to examine the symptoms these children experienced. Each child on average had 3 reported symptoms with the most common ones being pain, sleep problems, and feeding difficulties. Children with assisted feeding devices such as G/J tubes and children who require extensive home modifications due to mobility issues had, on average, more symptoms than those without.

As many children with PNCs are not capable of speaking, parents are the ones communicating symptoms they observe to their child’s physician. However, there is a discrepancy between the symptoms parents and clinicians reported; clinicians tended to report fewer symptoms. There are multiple possibilities for this inconsistency. Clinicians may only report symptoms that they are confident in treating or they may not assess a certain symptom because they cannot directly ask the non-verbal child. Alternatively, parents may be overemphasizing symptoms if a particular symptom is especially distressing to their child.

What this study tells us is that extra attention needs to be paid to symptoms of children with PNCs, especially if they have G/J tubes and mobility issues. Symptoms can provide insight into an underlying problem. Knowing the frequency and severity of a symptom can provide insight into its nature and help identify an appropriate treatment. Furthermore, clinicians need to be mindful of how parents report their child’s symptoms. It would perhaps be helpful to ask why parents are concerned about a particular symptom in order to address their and their child’s needs.