Shared decision-making is a process that helps frame conversations about value-sensitive decisions, such as introduction of assistive technology for children with neurologic impairment. In the shared decision-making model, the health care provider elicits family values relevant to the decision, provides applicable evidence in the context of those values, and collaborates with the family to identify the preferred option. This article outlines clinical, quality of life, and ethical considerations for shared decision-making discussions with families of children with neurologic impairment about gastrostomy tube and tracheostomy tube placement.
Key points
- •
Introduction of assistive technology, such as gastrostomy and tracheostomy tubes, for children with severe neurologic impairment is a value-sensitive decision.
- •
Value-sensitive decisions benefit from a shared decision-making model approach.
- •
Pediatric hospitalists can use a shared decision-making model to further discussions with families about assistive technology for children with neurologic impairment.
Introduction
Children with severe neurologic impairment, a growing population with high resource utilization, are frequently admitted to inpatient pediatric medicine wards with acute issues. Conversations about the introduction of life-sustaining technology often arise during admissions, and pediatric hospitalists are asked to help families navigate these complicated issues. This article discusses shared decision-making (SDM) as a strategy that can be used to help families make decisions and applies concepts from SDM to clinical cases about the introduction of technology for children with severe neurologic impairment.
Introduction
Children with severe neurologic impairment, a growing population with high resource utilization, are frequently admitted to inpatient pediatric medicine wards with acute issues. Conversations about the introduction of life-sustaining technology often arise during admissions, and pediatric hospitalists are asked to help families navigate these complicated issues. This article discusses shared decision-making (SDM) as a strategy that can be used to help families make decisions and applies concepts from SDM to clinical cases about the introduction of technology for children with severe neurologic impairment.
Shared decision-making
Definition and Potential Resources
In the past 2 decades, SDM has become an accepted model for collaborative communication between providers and patients or families to determine a treatment plan when multiple options exist, each with its own slate of risks and benefits. In SDM, family members express their goals and values related to the decision, the provider discusses the risks and benefits of each option, and the plan is negotiated jointly as the best of the available options within the context of those values ( Fig. 1 ). SDM differs from “paternalistic” (provider-based) and “informed” (patient or family-based) decision-making because neither the provider nor the family bears independent responsibility for the decision; instead, all sides listen to input from each other and decide together which options to pursue. Box 1 lists some practical tips for engaging with families in SDM conversations. Box 2 provides some example questions for eliciting family values. Pediatric palliative care teams often have experience with elicitation of family values and can be a resource for shared decision-making. Similarly, decision aids, which present neutral evidence about various treatment options in paper or electronic form, may help facilitate the SDM process.

-
Be aware that these important decisions may require repeated discussions over time, and allow adequate time for families to absorb information between conversations. Consider a trial of shorter-term interventions (eg, nasogastric tube feeding) while more permanent options are under consideration.
-
Explore family hopes and concerns, both around changes to daily life (eg, socialization, siblings) and influences on the big picture (eg, survival and prognosis).
-
Understand family context, structure, external supports, and finances, as they may significantly impact the decision-making process, sometimes in nonexplicit ways. Offer opportunity for extended family (eg, grandparents) to be part of discussions.
-
Engage and solicit opinions from health care providers the family trusts (eg, the primary care pediatrician) to help support decision-making.
-
Provide opportunities for discussion with other parents in similar situations about their decisional processes and experiences with technology.
-
What activities does your child particularly enjoy?
-
Is your child currently feeling well? If not, what symptoms are most bothersome to him or her?
-
When you think about your child’s health in the future, what are you most hopeful for?
-
When you think about your child’s health in the future, what worries you the most?
Importance of SDM in Decisions About Introduction of Technology
Introduction of technology has a substantial impact on families, often influencing their daily routines, as well as the frequency and intensity of their interactions with the health care system. Technology also may have implications that are harder to measure, as they potentially affect a child’s social interactions and influence parents’ perceptions of their efficacy as parents. The evidence about the utility of these interventions is limited; there are no randomized controlled trials demonstrating clear efficacy in this population to guide decision-making. Therefore, for decisions about technology in this population, utilization of SDM, which formally incorporates inclusion of family values in the decisional process, helps enrich the conversation and ensure that the family and provider have confidence in the resulting decision. This article outlines potentially relevant evidence about the use of 2 technological devices in this population by using the process of SDM as a framework.
Role of the Hospitalist
Although many families and providers believe that a long-standing relationship is invaluable for goal-based conversations with families, decisions to implement new technology may happen in the context of an acute hospitalization. When this situation occurs, the responsibility for guiding the decision-making process falls to the pediatric hospitalist. Although the hospitalist may not have a long history with the family, the use of a shared decision-making model can lead to important and meaningful conversations.
Gastrostomy
Case 1
Sara is an 18-month-old girl with spastic quadriplegic cerebral palsy who was admitted to the pediatrics ward with her third episode of pneumonia this winter, thought possibly related to aspiration, as she frequently chokes with feeding.
Available Options
For children who are unable to take adequate nutrition by mouth safely, several options exist for providing enteral feeds directly into the gastrointestinal (GI) system. Nasal tubes extending into the stomach (nasogastric), duodenum (nasoduodenal), or jejunum (nasojejunal) are frequently used for short-term (up to 8 weeks) feeding, and are occasionally used longer. Gastrostomy tube placement, which can be performed either surgically or percutaneously with endoscopic or radiographic visualization, involves creation of a permanent tract and installation of a tube through the abdominal wall into the stomach. If access to the jejunum is required, a gastrojejunostomy can be performed, which involves passing a longer tube from the gastrostomy opening through the pylorus and into the jejunum. Surgical or percutaneous jejunostomy, with direct passage of a tube through the abdominal wall into the jejunum, is another, less commonly used option. In general, the choice about which part of the GI tract is used (stomach, duodenum, or jejunum) depends on the child’s feeding tolerance and need for tube permanency. The stomach is typically the preferred target unless reflux or stomach content aspiration risk (eg, when combined with noninvasive ventilation) precludes its use. As surgical jejunostomy is uncommon and gastrostomy is often trialed before transition to gastrojejunostomy, this review focuses primarily on gastrostomy tube placement. Depending on clinical context, the continuation of oral feeding, even if clinically suboptimal because of poor nutrition or aspiration, also may be an option. Table 1 outlines the evidence, including quality of life and ethical considerations, for each feeding option.
Oral | Nasogastric Tube | Gastrostomy Tube | |
---|---|---|---|
Clinical benefits | Absence of potential complications associated with other methods | Presumed similar to gastrostomy tube, but minimal data specific to nasogastric tube delivery | Improved nutrition (shorter mealtimes, easier feeding) Decreased aspiration from above (unclear effect on aspiration pneumonia) Improved comfort, alertness, and mood |
Clinical risks | Risk of aspiration of feeds Potential for suboptimal nutrition | Tube misplacement Tube dislodgement Nasal ulceration from long-term use | Procedural complications including peritonitis, abscess, septicemia, death Ongoing potential complications, including site infection, tube migration/dislodgement, stomal leakage, site infection, tube blockage Potential increase in reflux symptoms |
Quality-of-life considerations | Important sensory experience Mealtime struggles to maintain adequate nutrition “Normal” life skill | No specific data | Improved caregiver quality of life Decreased caregiver stress Challenges obtaining respite care Stigma Sense of “failure” at important parental task of oral feeding Increased family costs |
Ethical considerations | No specific data | No specific data | Potential tradeoffs in type of discomfort (choking vs reflux symptoms) Potential future prolongation of life in state with very poor quality |
Evidence: Clinical Benefits
The benefit of gastrostomy tube feeding on nutritional status in patients with cerebral palsy has been established by multiple observational studies and is acknowledged in 2 clinical guidelines. The relationship between oromotor dysfunction and poor nutritional status in children with severe neurologic impairment is posited to be from a combination of inability to signal satiety combined with the prolonged meal times required for intake, together leading to unintentional underfeeding. Transition to enteral feeding reduces meal times and makes provision of appropriate nutrition easier.
Decreased aspiration of oral feeds, although a common goal of gastrostomy tube feeding, is more difficult to study. Aspiration into the lungs can occur from feeds taken orally, but also from feeds refluxed from the stomach to the oropharynx. Gastrostomy tube feeding is associated with decreased choking episodes during feeding, but it also is associated with increased rates of gastroesophageal reflux. An important clinical sequelae of aspiration is aspiration pneumonia, which is a substantial cause of morbidity and mortality in this population. The impact of gastrostomy tube placement on aspiration pneumonia is unclear; one observational study demonstrated decreased admissions for respiratory illnesses and another reported decreased chest infection frequency after gastrostomy tube feeding. Two studies also have demonstrated an association between the presence of a gastrostomy tube and increased mortality, which is thought potentially to be related to increased risk of aspiration. However, because substantial methodological challenges are associated with these studies (including confounding by indication), and subsequent studies demonstrate a broad range of outcomes, the actual impact of gastrostomy tube feeding on respiratory morbidity and mortality is not clear.
Clinical benefits associated with nasogastric tube feeding are similar to those for gastrostomy tube feeding. In the context of oromotor dysfunction, there are no specific clinical benefits associated with continued oral feeding, except the absence of potential complications associated with nonoral feeding methods.
Evidence: Clinical Challenges
Clinical challenges associated with initiation of gastrostomy tube feeds include increased gastroesophageal reflux and potential association with increased mortality, as described previously, as well as complications related to the procedure and problems related to the tube itself. Specific procedural complications are related to the method of tube placement (surgical, endoscopic, or image-guided) and whether or not general anesthesia is required. Patient characteristics (eg, anatomy) and institutional preference may impact the methodology chosen. In a retrospective cohort study of image-guided gastrostomy tube placement, 5% of patients had major complications, including peritonitis (3%), subcutaneous abscess (2%), septicemia (1%), GI bleed (0.4%), and death (0.4%).
Important possible ongoing complications related to a gastrostomy tube include tube migration, site infection, leakage from the stoma, development of granulation tissue around the stoma, tube blockage, and dislodgement. Most patients with long-term use of a gastrostomy tube will likely encounter one or more of these complications; one prospective study of 74 children found that 82% had at least one minor complication during the 6-month follow-up period. Many of these issues exist on a continuum from mild types amenable to home interventions (eg, use of cola to unclog blockage) to more serious issues requiring hospital-level evaluation and care (eg, tube dislodgement before mature development of the tract).
Challenges related to nasogastric tube use include risk of tube misplacement (eg, accidental insertion into the lung), easy tube dislodgement, and nasal ulceration from long-term use. Challenges related to continued oral feeding with oromotor dysfunction include risk of aspiration and suboptimal nutrition.
Values: Quality-of-Life Considerations
One study evaluating parental-reported quality of life (QOL) in children with neurologic impairment before and after gastrostomy tube placement did not demonstrate improvement in child QOL as assessed before and 1 year after. However, another study found that the QOL of caregivers did improve following tube placement. Parents also describe decreased levels of stress and decreased worries about their child’s nutritional state.
In qualitative studies, parents report that gastrostomy tube placement has both positive and negative impacts on their home life. Many families described challenges obtaining home and respite care because of the technical skill required to give gastrostomy tube feeds, and this issue was sometimes associated with decreased parental employment. Some parents also commented on increased financial burdens associated with gastrostomy tube feeds. Another common theme involved changes in socialization: parents often felt stigmatized when feeding in public, perceiving that strangers were staring and judging and felt less able to go on outings because of equipment needed for feeding or discomfort feeding in public. Finally, many parents discussed the symbolic importance of permanent gastrostomy tube feeding, framing the impact of stopping of oral feeding both in terms of their child’s experience of the world and in creating a sense of failure about their inability to carry out an important task of parenthood.
We were unable to identify studies explicitly exploring the impact of nasogastric feeding, typically a short-term intervention, on family life of children with neurologic impairment. However, the importance and meaning of oral feeding were discussed extensively in the qualitative interviews as the reference point for many families. When attempting to meet nutritional goals with oral feeds in the context of oromotor dysfunction, families often used negative language, describing feeding as “torture” or “a battle.” However, other parents described the value of oral feedings as representing a “normal” life skill and as an important enjoyable sensory experience for their child.
Values: Ethical Considerations
Gastrostomy tube placement represents a life-sustaining technology, and conversations about it invite consideration of big-picture goals, especially when the child’s medical condition is progressive rather than static. For example, if the primary goal of gastrostomy tube placement is to maximize comfort by decreasing choking, parents may benefit from hearing that gastrostomy tubes can worsen reflux, leading to a different kind of discomfort. Also, for children with progressive underlying diagnoses, provision of artificial nutrition might in the future prolong life in a state with very poor quality. Some families may not want to potentially face a decision about forgoing artificial nutrition, and may appreciate knowing the possible impact of gastrostomy tube on end-of-life decisions before they make the decision to place one. Families struggling with the decision about gastrostomy tube feeding might benefit from the support of a pediatric palliative care team.

Stay updated, free articles. Join our Telegram channel

Full access? Get Clinical Tree

