I have used those words on countless occasions while explaining severe/ non-survivable brain injury to patient's families. There are many phrases that providers use to describe end-of-life care. Palliative care. Palliative extubation. Withdrawal of care. Withholding of care.(1) Words are powerful, and conversations about the death of a loved one are remembered well into the future. What they hear can significantly impact their perception of how you are caring for their family or friend. Phrases such as “withdrawing care” can signal that the medical team is giving up and sticking their mother or child or best friend in a dark corner to die a miserable death. We aren’t withdrawing care- in reality, we are continuing to provide maximal patient care, following their wishes. Just because the result is death doesn’t mean we aren’t caring. Death isn’t pretty, and we shouldn’t pretend that we can eliminate the family's pain. But our approach to providing a peaceful dignified death with minimal pain and distress and anxiety can ease some of the family's distress.

     During my year of dedicated ICU training, I have guided countless families through the decision-making process of end of life care and several conversations will be permanently etched in my memory. I am grateful that I was able to witness and learn from some incredibly experienced and compassionate critical care physicians. While I can’t completely pull back the curtain on the details of these conversations or the specifics of treatment at the end of life, I will share some of the wisdom I gleaned.

     The patient is already being actively cared for when we have these conversations. Pain and anxiety are treated, bony prominences positioned and patients are turned frequently to prevent pressure wounds. The focus of the conversation is directed at relieving the emotional suffering and distress of the family and friends. Every conversation is different, and empathy and tact are paramount. Also, allowing time for people to express their thoughts is important. It allows them to unload what they are struggling with and also allows the team to tailor the discussion to address their specific concerns. Loved ones present a wide spectrum of emotions. Recognizing and validating these feelings is one way to reassure people that what they are experiencing is not abnormal. It's also a very important step in assessing their understanding of the gravity of the current situation, as well as developing a sense of what their wishes would be (ie mom was very independent and would never want to live like this, my husband writes and teaches, and he wouldn't want to exist if he can't interact in a meaningful way).

     Some struggle with guilt about unresolved disputes. Others struggle with the crushing sadness of unrealized dreams for their child. But one emotion and concern that is almost universal is guilt about deciding to proceed with comfort care. One such interaction that I will never forget was about the children who were wrestling with the thought of giving up and letting go of their mother who had a devastating brain injury after a car accident. Their respect and love for their mother made it challenging to reconcile with the reality that she wasn’t ever going to be the same person. They talked about how strong and independent she was, and how she would never want to exist in a state of complete dependence. As I sat quietly listening, I heard the words of one of my mentors in my head…”You are showing your love for your mother. This is a gift that you can give her.” We will never erase their feelings, but we can provide reassurance that they aren't inflicting pain and suffering on their family, but they are actually respecting their wishes not to live in this condition.

     One of the phrases I adopted during my training was “The person you know her (him) as isn’t there anymore.” Seeing flickers of movement, watching their chest rise and fall, and feeling the warmth of their skin can all give hope, that maybe with time and aggressive care, their husband will return to them, their child will wake up and smile at them. The invisible truth of a devastating injury often hides the reality. It is our responsibility and privilege to guide these families through what is likely to be one of the most heart-wrenching moments of their life and to show compassion in our conversation and our care for their loved one. We aren't withdrawing care- we care for our patients until they die, but our goals of care should shift to align with their wishes.