Giving Up

I remember reading the short introduction to the end-of-life chapter in one of my textbooks.  The discussion highlighted how abrupt the shift can be from the mindset of "do everything possible to keep this person alive," over to "ensure that the person is comfortable and be present for the family."  Even the verbiage around this decision point can get tricky and seems inherently negative, talking about "giving up" or "throwing in the towel."  

"Giving up" can be a virtue.  Realistically looking at a situation and understanding that some of the measures available would only buy a tiny bit of time for a significant amount of suffering, some of these are no longer a kindness.  One particular family comes to mind, that they agreed to a temporary dialysis catheter, in the vein of "not wanting to give up," and added a new degree of misery to their situation; the patient was placed on hospice a day or so later and passed soon after that.  I have seen many more languish for multiple days because the patient insisted they were "going to get better," and I was no longer able to discern whether this was performative for me, their family, or themselves.  

Of course, if the line were clear we would not have so much anxiety around it.  The hard part is the finality, where tears blur even the clearest situations.  But as soon as the switch is flipped from "what measures can we take?" over to "how can we make them at ease?", I feel a particular relief in the air.  The urgency transitions to a new energy of preparation, a darker kind of anticipation.  And in myself, I feel a significant shift in how I think of that patient in that room.  I am more sensitive to their choices, as in I will not try to encourage or persuade a specific course of action--if the person does not feel like eating, then they don't have to, as I am no longer focused on the longer outcome; if they want to stay in the same position and not be turned, I can honor that without being considered negligent.  How I include the family also changes, inviting them to reminisce and tell me about their loved one as they lived--to see them through their family's eyes--particularly when it seems they need a breath of air in their grieving process.  

There is relief in making the decision.  There is still a degree of dread in place of outright fear, yet the tempo has slowed.  As a nurse, there is less to do physically in some ways, but I have the opportunity to engage emotionally, to linger in those spaces of human connection with a broader invitation than I might have otherwise.  

Not everyone makes that transition well, particularly when the goal has been to fight, fight, fight for so long.  And I think that this is in part due to our verbiage:  there is an implication when someone has "given up" or "lost the fight" that maybe if only they had fought harder, it would not have ended this way.  There is a shadow of blame that follows the words in a way that can hurt people.  

Sometimes, there is no "winning."  There's also the concept of the sunk cost fallacy, that basically means that there is a tendency to stay in a losing situation because so much time and resources have been spent toward it already.  It's harder to leave the longer one has invested, which can add context to a lot of abusive relationships.  Similarly, I have seen patients that have tried all the things to a degree that is no longer logical on an outside perspective.  And yet.  

Sometimes there is a "better" even if there is no "winning."  It takes a certain degree of energy to detach oneself and look at the whole perspective, to weigh difficult factors together.  I feel, though, that how we refer to it in the context of our healthcare, I want to make an active shift away from battles and wars and fighting.  No one is keeping score.  The blame elements add unnecessary hurt, complicate the grief, exacerbate guilt.  Someone is not lesser for determining that they have a different threshold that what people expect of them.  I work to morph my expression of kindness depending on what the patient has outlined, that they want a specific quality of life or a specific quality of comfort--they can be mutually exclusive or they can cohabitate, depending on the other factors.  Sometimes people cannot be honest with themselves about their goals, too, which makes all else much trickier, as I weigh their verbal and nonverbal messages.  

My job is to coach based on those goals, to advise based on their feedback and my clinical expertise.  I can outline options, fulfill agreed upon interventions, teach, but I cannot make decisions for the patient--I have seen many, many self-destructive choices and will see many more.  Yet when we reach a crossroads, I must find a way to meet the conversation with a certain mixture of honesty tempered with gentleness.  A conversation, seems to me, is a better framing than a battle.