When children with serious brain and nerve problems can’t eat normally anymore, doctors sometimes use special feeding tubes that go directly into the bloodstream to provide nutrition. This study looked at four children who received this type of feeding support as part of their end-of-life care. The doctors found that when a team of nutrition experts and comfort-care specialists worked together with families to make decisions, the feeding tubes helped provide comfort and allowed families to feel like they were still caring for their children. The study shows that this approach can be meaningful when used thoughtfully, with careful attention to what each family values most.

The Quick Take

  • What they studied: How feeding tubes that deliver nutrition directly into the bloodstream can be used to comfort children with severe neurological conditions at the end of life, and how doctors and families can work together to make these decisions.
  • Who participated: Four children ranging from 1 to 12 years old who had serious brain and nerve problems and could no longer eat normally. All were enrolled in hospice care (a program focused on comfort rather than cure).
  • Key finding: When nutrition specialists and comfort-care doctors worked together with families to create personalized plans, feeding tubes helped provide comfort and supported what families felt was important. All four children were able to receive this care at home while in hospice.
  • What it means for you: If your child has a serious neurological condition and develops feeding problems near the end of life, having doctors from different specialties work together with your family to make decisions may help you feel supported and allow you to focus on comfort and connection. This approach respects what your family values most.

The Research Details

This study looked back at the medical records of four children who received a special type of nutrition support called home parenteral nutrition (HPN) while receiving end-of-life care. Parenteral nutrition means nutrition is delivered directly into the bloodstream through a tube, bypassing the stomach and intestines. The researchers examined how doctors made decisions with families, what care plans were created, and how long each child received this support. Two teams of specialists—nutrition experts and palliative care doctors (doctors who focus on comfort)—worked together to care for each child. The study describes each child’s situation, the decisions made, and how the care was managed at home.

This research approach is important because it shows real-world examples of how to use feeding tubes in a new way—not to try to cure a disease, but to provide comfort and support families’ values at the end of life. By looking at actual cases, doctors can learn what works well and what challenges families face. This helps improve how doctors talk with families and plan care together.

This is a small study of only four children, so the findings may not apply to all children in similar situations. Because it’s a case report (looking back at what already happened), it cannot prove that this approach is better than other approaches. However, the detailed descriptions of each case provide valuable real-world insights. The study was conducted by experienced doctors at what appears to be a specialized medical center, which adds credibility. The main strength is that it shows how different medical teams can work together effectively.

What the Results Show

All four children successfully received nutrition through feeding tubes at home while enrolled in hospice care. The children ranged in age from 1 to 12 years old, and received this type of nutrition support for different lengths of time—from 5 weeks to 2 years. In each case, the nutrition team and comfort-care team worked together with the family to create a personalized plan that matched what the family valued most. The plans included decisions about how often to check blood work, how to handle fevers, how to care for the feeding tube, and how to measure the child’s growth. Families reported finding comfort in being able to provide nutrition to their children, even though the children could not eat normally. The doctors emphasized that these decisions were made through shared decision-making, meaning the family’s wishes and values guided the plans.

The study found that feeding intolerance (when a child’s body cannot handle food or nutrition) often came as a surprise to families and happened near the end of life. This meant families had to make difficult decisions quickly without much time to prepare. The study also showed that having clear, individualized plans helped reduce stress and uncertainty. Each family’s approach was different based on their own values and what they felt was most important. The involvement of both nutrition specialists and comfort-care doctors together was important for making sure all aspects of care were considered.

Historically, feeding tubes that deliver nutrition directly into the bloodstream were used as a temporary measure to help children get better or as a bridge to other types of feeding. This study describes a newer use of this technology—providing comfort and supporting family values at the end of life rather than trying to cure disease. This represents a shift in how doctors think about using this tool. The study suggests that this approach fills an important gap in care for children with serious neurological conditions who develop feeding problems near the end of life.

This study has several important limitations. It includes only four children, so the findings may not apply to all children in similar situations. The study looked back at what already happened (retrospective), so it cannot prove that this approach is better than other approaches. The study does not compare this method to other ways of providing comfort at the end of life. We don’t know how common this situation is or how many families might benefit from this approach. The study was conducted at one medical center, so the results may not apply to other hospitals or communities with different resources or approaches.

The Bottom Line

If your child has a serious neurological condition and develops severe feeding problems near the end of life, ask your doctors about having a nutrition specialist and comfort-care specialist work together to create a personalized plan. Make sure your family’s values and wishes guide all decisions. Have honest conversations with your medical team about what you hope to achieve and what matters most to your family. (Confidence level: Low to Moderate—based on a small number of cases, but supported by expert clinical experience.)

This information is most relevant for families of children with severe neurological conditions who may face feeding problems near the end of life. It’s also important for doctors and nurses who care for these children. This approach may not be appropriate for all situations or all families, and decisions should be made individually with your medical team. This is not relevant for children with typical feeding problems or for situations where recovery is expected.

The benefits of this approach—such as reduced stress, better communication with doctors, and increased comfort—may be felt relatively quickly once a good plan is in place. However, this is about comfort and quality of life rather than medical improvement, so ‘benefits’ are measured differently than with other treatments. The focus is on creating meaningful time with your child and supporting your family’s values.

Want to Apply This Research?

  • If using a health app, track daily comfort indicators such as: pain or distress level (1-10 scale), feeding tube site condition (clean, red, or concerning), fever episodes, family stress level, and meaningful moments or connections with your child. This creates a record of what’s working well in your care plan.
  • Work with your medical team to schedule regular check-ins (weekly or monthly, depending on your situation) to review your child’s comfort, discuss any concerns, and adjust the care plan as needed. Use the app to prepare for these meetings by noting questions and observations.
  • Create a simple log in the app that tracks: feeding tube care routines, any medical events (fevers, infections), family well-being, and adjustments to the care plan. Share this information with your medical team to help them understand what’s working and what needs to change. This ongoing communication helps ensure the care plan continues to match your family’s needs and values.

This study describes the experiences of four individual children and should not be considered medical advice. Decisions about feeding tubes and end-of-life care are deeply personal and should be made with your child’s medical team, considering your family’s unique situation, values, and goals. If your child has a serious neurological condition and is experiencing feeding problems, speak with your pediatrician about whether this approach might be appropriate for your family. This information is educational only and does not replace professional medical guidance.