Completed Studies

Nutritional Failure at end of life in a pediatric palliative population

Investigators and Staff: Betty Davies, Hal Siden, Rose Steele, Susan Cadell, Lynn Straatman, Carol Hartnett, Carly Fleming, Gail Andrews, Lisa Jacques

Children with progressive life-threatening diseases often present with worsening intolerance of enteral feeds during the end-of-life phase. The PedPalNet was able to bring together 31 researchers, clinicians, and stakeholders from Canada, USA, and Europe to work intensively over a two day period to reach consensus about the phenomenon. A retrospective case-series was performed to identify patients in a pediatric palliative care setting who experienced a progressive intolerance to enteral feeds. The study has been submitted for publication.

It has been frequently observed that nutritional failure occurs during the end-of-life phase in children with progressive life-threatening diseases. Nutritional failure clinically manifests as an increasing intolerance of feeding despite modifications in feeding route, formula composition, and the use of medications. Nutritional failure may be an early indicator, and perhaps in some cases a primary cause, of the onset of the terminal phase in children with chronic progressive life-threatening diseases. This phenomenon has been seen in many patients clinically, but has not been adequately described in the literature.

Many hypotheses are proposed to explain the phenomenon. Nutritional failure at end-of-life in children may be due to disruption of the intrinsic gut nervous system and, in turn, may be secondary to disruptions of the central nervous system. Alternatively, depletion of micronutrient stores may be the inciting cause. Another hypothesis is that underlying hormonal dysregulation is a cause. However, as the phenomenon of nutritional failure is not yet well described, these are only hypotheses and other (multiple) mechanisms may be at work.

The PedPalNet was able to bring together 31 researchers, clinicians, and stakeholders from Canada, US and Europe to work intensively over a two day period to reach consensus about the phenomenon.

The first outcome of the workshop was the creation of a consensus clinical description and identification of relevant markers, as well as recommendations for laboratory and imaging studies, in order to describe, in detail, the clinical phenomenon of nutritional failure at end-of-life. Developing a research agenda is the second anticipated result. The group identified key priorities for research in the area of nutritional failure at the end-of-life in a pediatric palliative care population. The development of research questions is the first step towards the creation of a research agenda and the eventual contribution to the knowledge that this research represents. Thirdly, this workshop brought together scientists and clinicians who rarely have the opportunity to interact, and as a result, a retrospective case-series was performed to identify patients in a pediatric palliative care setting who experienced a progressive intolerance to enteral feeds. A better understanding of this previously unreported clinical entity will have a considerable impact on the medical management and the quality of life of children with progressive life threatening diseases, and may be a useful tool in prognosticating for these children.

Funding Agency

Canadian Institutes of Health Research (CIHR) Workshop Funding Program

What We Learned

Bringing together a diverse group of people with interest in an area is very helpful in exploring multiple aspects of a phenomenon. This workshop resulted in the creation of a consensus clinical description and identification of relevant markers, as well as recommendations for laboratory and imaging studies, in order to describe, in detail, the clinical phenomenon of nutritional failure at end-of-life. The importance of developing a research agenda was highlighted.

What’s Next

A manuscript reporting on the proceedings of the workshop has been submitted. A second manuscript has also been submitted in which we present a brief literature review and a retrospective case-series of children in a palliative care setting who experienced complete feeding intolerance during their terminal phase. Future research proposals are being discussed.