Introduction

Feeding is considered central to the parental role.  Many paediatricians also value nutrition as an important component of care.  

Background

For infants, and children with disability, the provision of Artificial Nutrition and Hydration (ANH) by nasogastric tube or gastrostomy can be considered.  Such decisions need to be individualised to the specific case at hand, and can on occasion be associated with conflict and/or moral distress.

Aim

Through the presentation of interactive case studies, this workshop hopes to highlight some of the clinical and ethical considerations around provision of ANH to children receiving palliative care

Methodology

Case Studies

A: A 7 year old boy with cerebral palsy has been deteriorating over the pats 12 months.  His mother asked if she can stop his gastrostomy feeds due to frequent vomiting and abdominal pain.  

B: An 8 month old girl with a hypoxic brain injury suffered at birth is having nasogastric tube feeds.   She is gaining weight appropriately.  Her parents feel she has no quality of life and ask if they could discontinue both her gastrostomy feeds and her anti-seizure medicines.

Half of the participants will discuss case study A in 1 – 2 groups, while the other half of the group will discuss case study B in 1 – 2 groups.  Facilitators will help guide discussion.  There will then be opportunity for each group to discuss the other case.

Through discussing cases, we hope that clinicians will appreciate new knowledge and skills in relation to clinical assessment and ethical reasoning.  We also hope that skills of collaboration through multi-disciplinary assessment and meetings, as well as consideration of the role of clinical ethical consultation services will be appreciated.

There will be a summation session provided by the workshop facilitators that will highlight the key clinical and ethical themes related to this topic.

Key Learnings

An individualised approach to issues relating to ANH is required which starts with a through clinical assessment (including stage of child’s illness and family goals of care)

Key ethical principles to assist in managing difficult nutritional issues in PPC (balance of benefits versus harms, zone of parental discretion, caring for vulnerable populations such as the young, non-verbal and those with disability).

Timeframe required – 90 mins

Preferred Audience Size – 30 participants