“What would you do, doctor?” The family had been explicit in wanting straightforward communication about their child, whose neurological disease had progressed to the point where she was continually seizing, despite every medication the physicians had tried. The seizures were in turn damaging her brain, such that she was minimally responsive to stimuli and was not expected to regain significant awareness of her surroundings.

I held my breath as I anticipated the doctor’s reply. She had spent many hours with this patient and family, and had built trust with the parents. 

“As a physician… I would transition my child to comfort care and ultimately let her go. But… as a mother… I would struggle to do this.”

The patient’s mom nodded tearfully. The doctor had given an honest reply, and had still ultimately left the choice to the parents.

I took care of this patient in her final few days of life. The parents were heartbroken but also clear in their decision. We walked them through each step, and made sure they felt supported to the best of our ability, down to their very last goodbye with their child.

*

There is power in the medication and therapies we apply. Fluid and vasopressors to tightly control a patient’s blood pressure. Dialysis machines to remove toxins and exact amounts of fluid from a patient’s body.

There is also power in both our position and our relationships to these patients and families, a power that can sway vascillating emotions and thoughts just as much as a vasopressor can sway a blood pressure. With this power comes an ethical responsibility that we must not ignore or disregard.

But what is that ethical responsibility to? Is it to what I believe to be the right decision for a patient and family?

*

I became very close to the mother of a previously healthy eight year-old patient who had suffered a severe infection that had left him with significant brain damage. The interdisciplinary team knew the mother was devastated, but had difficulty in the critical early weeks making deeper connections with her, as they sought to understand how she was processing her two options of keeping her child alive with a tracheostomy (trach) and G-tube, or transitioning to comfort care and letting her child die. 

I grew curious about the mom, and had small but meaningful moments of connection with her early on that I thought I might have the ability to build on. With persistence, gentle curiosity, and a lot of good fortune, I was able to build on our conversations, and soon the mom began to share openly with me about her family, her feelings and struggles.

I signed up to follow this patient as a primary nurse, and recognized early on that I had a lot of power to sway the mom. I recognized that there were understandably strong feelings amongst many of my colleagues that the trach/G-tube route was not in the patient or family’s best interest. I had to be very, very careful to not unintentionally project our bias – even a genuinely well-intentioned bias – onto the mom, before I had taken the time to really understand where she was coming from.

Let’s talk about that bias for a moment. We all feel the loss of who the patient was before the infection. We anticipate the turmoil this throws the family into, as the trauma has upended their former way of life, and it is difficult for everyone in the early throes of shock and grief to imagine how any kind of joy or goodness might re-emerge out of such tragedy. Of course nobody wants a completely previously healthy child to become bedbound and dependent on medical equipment for life. 

As someone who, like most of my colleagues, struggles tremendously with uncertainty, my inclination is to move relatively quickly towards some sort of resolution. In situations where brain damage has occurred, the perpetual question of “How much recovery might we see and when?” feels like an intolerable purgatory. I am personally not inclined toward a long, hard road when it is marked by utter lack of clarity.

This mom wasn’t either. She wept and ached at the prospect of it all. I realized one day that for all the “Yes, ok” she had said to physicians in their explanations of trachs and G-tubes, she had privately been too scared to look at any images of them on the internet and in reality had no idea what people were trying to describe to her. It was only when I offered to bring up some images with her, and talk her through what we were seeing, that she had the courage to really think about them. And with that, the ability to actually begin envisioning a future for her son and their family with these interventions.

This was not the quality of life she wanted for her child or her family.

And so, the decision seems clear, does it not? Guide the mom towards what comfort care and as gentle of a dying process for her child might look like.

Well, as we continued to talk for hours at her son’s bedside, the mom told me why the latter choice was not an option. Her son had always been afraid of being alone. He had always wanted his mom or someone else to be with him. In the mom’s perspective, to give her son over to death at this juncture was to subject him to the ultimate aloneness. Of course she didn’t want the trach and G-tube. She wanted her healthy, whole son back. But choosing to relinquish him to death would be a kind of torture that superseded the suffering that would accompany life with a trach and G-tube. This ‘quality’ of solitary existence for her son, and the subsequent agony and guilt she and her family would carry with his death, was the worse of the two very terrible options this mom had to consider. 

From this place of understanding, I was able to communicate to the rest of our team what this mother needed by way of our guidance and support. I was able to begin gently inviting the mom into more direct hands-on care so we could set her up for success as her son’s caregiver. I was able to watch the mom move from crippling overwhelmedness to greater peace and confidence. 

All of this is not to say that I didn’t wrestle deeply with my own grief and questions over this patient and family. It is not to say that there is no place for very important, necessary discussions about the ethical offering and use of medical interventions. 

But I shudder to think what it would have looked like if I had imposed my initial bias upon this mom, without doing the patient, hard work of asking, listening, asking, and listening some more to her perspective. The power I had as someone with a connection of trust was not a power for me to use for my own peace of mind, but for this mom and family who needed as much peace with their rightful decisionmaking as they could have. From there, our responsibility as I saw it, was to empower them to succeed, and to maximize their son’s comfort and quality of family time, with his trach and G-tube.

This is, I realize, a very tender topic. But these are the scenarios that our patients and families find themselves in in 2025, and our obligation is to walk closely and humbly with them in the very grey, uncomfortable spaces that they are navigating, not to throw blanket judgments on them from afar and try to persuade them from that distanced vantage point. My close, therapeutic relationship with this mom ultimately had to serve what was best for her and her family, even if it wasn’t something I would have chosen for myself. This means that I shoulder some lingering weight from that tension, and this moral distress is a real force at times to grapple with. But at the end of the day, the entirety of healthcare decisions can’t and won’t revolve around just my personal moral compass, and to some degree, I have to learn how to be stretched by this reality and still hold to my ethical integrity in walking with these families.