Ethical use of our therapeutic contacts with patients’ families

Allowing room for uncertainty.

Let’s speak about this bias for a moment. We all feel the lack of who the patient was before the infection. We anticipate the turmoil it will place the family in, because the trauma has upended their lifestyle, and it’s difficult for anyone within the initial stages of shock and grief to assume how any joy or good could emerge from such a tragedy. Of course, nobody wants a previously completely healthy child to develop into bedridden and depending on medical equipment for the remaining of their life.

As someone who, like most of my colleagues, struggles tremendously with uncertainty, I are likely to approach some kind of solution relatively quickly. In situations where brain damage has occurred, the constant query is, “How much recovery can we see and when?” it resembles an unbearable purgatory. Personally, I’m not willing to take the long and difficult path when it’s marked by an entire lack of transparency.

This mom wasn’t like that either. She cried and suffered on the considered all this. One day I spotted that despite all of the “Yes, OK” words she had told doctors in explanations about trachs and G-tubes, privately she was too terrified to have a look at any pictures of them online, and he or she really had no idea what people were attempting to describe to her. It wasn’t until I offered to bring some photos With her and told her about what we had seen in order that she would have the courage to essentially take into consideration them. Consequently, due to these interventions, he’ll actually begin to assume the longer term of his son and their family.

This was not the standard of life she wanted for her child and family.

Each family’s process is exclusive.

So the choice seems clear, right? Educate the mother about what comfortable care can appear to be and the fragile means of her baby dying.

Well, not so fast. As we talked for hours at her son’s bedside, the mother told me why she selected the latter option NO option. Her son was at all times afraid of loneliness. He at all times wanted his mother or another person to be with him. From the mother’s perspective, letting her son die at that moment meant exposing him to extreme loneliness.

Of course she didn’t desire a trach and a G-tube. She wanted her healthy, whole son back. However, putting him to death could be a type of torture that may replace the suffering that comes with living with a trach and a G-tube. This “feature” of her son’s solitary existence, and the resulting agony and guilt that she and her family would carry over his death, was the worst of two very terrible options this mother had to think about.

From this recent place of understanding, I used to be capable of convey to the remaining of our team what this mother needed through our guidance and support. I used to be capable of gently invite the mother into more direct, hands-on care in order that we could set her up for achievement as her son’s caregiver. I used to be capable of watch my mother go from a state of paralyzing overwhelm to greater peace and confidence.

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It’s all there NO to say that I actually have not struggled deeply with my very own sadness and questions regarding this patient and family. This is NO to say that there isn’t any room here for very essential, needed discussions in regards to the ethical offering and use of medical interventions.

But I shudder to think what it might have been like if I had imposed my initial prejudices on this mother without giving the patient the labor of asking, listening, asking, and much more listening to her viewpoint. The power I had as an individual of trust was not power I could use for my very own peace of mind, but for this mother and family who needed a lot peace with their legitimate decision making as much as they might. From that time on, I felt it was our responsibility to set them up for achievement and maximize their son’s comfort and quality family time along with his trach and G-tube.

I realize that it is a very sensitive topic. But these are the scenarios that our patients and families will find themselves in in 2025, and it’s our responsibility to walk closely and humbly with them within the very gray, uncomfortable spaces that they move in, and never to solid blanket judgments at them from afar and take a look at to persuade them from that distant viewpoint. My close, therapeutic relationship with this mom needed to ultimately serve what was best for her and her family, even when it wasn’t something I’d have chosen. This signifies that I carry a few of the burden of this tension, and this moral anxiety is typically an actual force to contend with.

But ultimately, all health care decisions cannot and won’t be based solely on my personal moral compass, so to some extent I have to learn to not be swayed by this reality and proceed to carry on to my ethical integrity as I interact with these families.