https://www.infirmiere-canadienne.com/blogs/ic-contenu/2026/03/30/lalimentation-en-fin-de-vie
The importance of creating room for reflection, especially when we are stuck between what we know and what we are allowed to do
By Joanne Tay
March 30, 2026
istockphoto.com/ridvan_celik
Feeding, for many families, is an expression of love. It is care. It is a connection. Especially when a child has been on enteral feeds for a long time, the idea of stopping feels unbearable.
Pediatric palliative care is unlike any other type of nursing. It takes courage, compassion, and a kind of emotional endurance to walk with families through the darkest moments of their lives.
Courtesy of Joanne Tay
“I do not have a perfect answer to the feeding dilemma. I do not think there is one. But I do believe we need more spaces to talk about it. Among nurses. Among teams. We should feel comfortable to say ‘this is hard’ without judgment,” Joanne Tay says.
As a children’s hospice nurse, I provide care to children with complex, life-limiting illnesses. Some of these children have lived with progressive conditions for years. Others have just received devastating diagnoses that bring a sudden and irreversible shift in the course of their lives.
In this role, I am part of many intimate, heart-wrenching conversations. These occur not only with families and children, but also with colleagues. We all want the same thing: to offer end-of-life care that is not just compassionate, but truly aligned with what comfort means for each child and their family. And yet, even with a shared goal, there are moments when we find ourselves at an impasse. One of the most difficult and recurring dilemmas we face is feeding at the end of life.
Feeding, for many families, is an expression of love. It is care. It is a connection. Especially when a child has been on enteral feeds for a long time, the idea of stopping feels unbearable. Parents fear that we are asking them to starve their child. While we try to explain that the body is shutting down, that digestion is slowing, and that continued feeding may bring more harm than comfort, these conversations are layered with grief, guilt and fear.
As nurses, we follow the plan of care that has been agreed upon with the family. But at the bedside, it is hard. We see the signs. We hear the wet lungs, the crackles, the strain in every breath. We perform frequent suctioning, reposition the child for comfort, and try to reduce the distress. We do this knowing that continued feeding might contribute to the discomfort we are working so hard to relieve.
We advocate. That is our role. We advocate for comfort, dignity, and quality of life. We advocate with families, physicians, and the broader palliative care team. Sometimes, we can reach a shared understanding, reduce fears, shift priorities and find a gentler path. Other times, the feeding continues because parents are not ready, hope lingers, or the pain of letting go is still too sharp.
And so, we support. We support families through the emotional weight of these decisions. We bear witness to their struggle. But here is the part rarely discussed: what do we do with our own struggle? What happens when the care we provide does not align with what we believe is in the child’s best interest? What happens when we feel powerless to change the course, even though we are at the bedside every day, watching, worrying and aching?
This is the kind of moral distress that wears nurses down over time. When our advocacy does not lead to change, we question our role. Are we really helping? Are we just going through the motions? The emotional labour builds up. If we do not talk about it or support each other through it, we risk losing the very thing that brought us to this work: our ability to care deeply.
I do not have a perfect answer to the feeding dilemma. I do not think there is one. But I do believe we need more spaces to talk about it. Among nurses. Among teams. We should feel comfortable to say “this is hard” without judgment. We need to acknowledge that doing the right thing is not always clear-cut; even when it is, we do not always get to do it.
Supporting each other in this work means more than debriefing after a death. It means creating room for reflection during care, especially when we are stuck between what we know and what we are allowed to do. It means recognizing that our distress is not a weakness but a sign of how deeply we care. And it means asking honestly how we can protect ourselves and each other from the slow erosion that comes with burnout and moral distress.
At the end of the day, we are here because we care. And if that care begins to feel like a fight we are losing, then we need to find a way back to one another. We need to remember that we are not alone in these moments. We can hold space for our patients, for families, and for each other.
Joanne Tay, RN, MPH, PhD, is an assistant professor at the University of Windsor Faculty of Nursing.
#opinions
#child-and-youth
#end-of-life-care
#nurse-patient-relationship
#nurses-health-and-well-being
#nursing-practice
#palliative-care