Of all the end-of-life cases I’ve cared for, her mother’s was my hardest. Not one to complain about patient assignments, this one taxed me. It wasn’t that I disliked her or her mother, it was just that I couldn’t understand them.
With tumors bloating her body, my patient was physically heavy. Her brain was eaten by the cancer that popped out of her skin, so she did little more than breath in perfect synch with the ventilator. I, with the rest of the ICU team, felt that her supportive care should be withdrawn and shifted towards comfort, but because my patient had once breathed the words, “Do everything,” to her young daughter, we were tasked with aggressively sustaining her failing life.
The attending staff on my unit held to progressive and reality-based end-of-life discussions and tactics. It’d be safe to say that the team erred on the side of comfort care – and rightly so – many of our patients arrived to the unit with little chance of making a viable exit. Most families welcomed their direct counsel, allowing gravely ill loved ones to pass with the help of medication and protocols focused on alleviating pain.
But this patient’s course was different. Her daughter was my age, a determined, vibrant-looking woman. Before she quelled at our contrasting sentiments about her mother’s end-of-life care, she confided about the pain of her father’s recent death, and her mother’s sudden, swift illness and wish to remain alive until the last minute possible, no matter the cost.
But we countered, and maybe too much. The tracheostomy was a risky, bad idea; your mother would become a vegetable, if she even survived. Your mother is already comatose; coding her would put her brain under further trauma and result in greater deficits. Your mother’s pain isn’t obvious to the eye; she might be suffering more than we can tell. To our dismay, each line of clinically-sound logic pushed my patient’s daughter farther and farther away from making the decision that we thought was the right one.
In our distress, we talked of this case in the lunch room, both marveling at our perception of the daughter’s firm choice, and simultaneously pitying it. “She’s too young to know any better, and she’s all alone,” some said. Others, “She’s holding out for money, probably.” Whichever way we talked it, our group standpoint was clear: the patient was dying, and her daughter should stop trying to impede that process.
I was a young nurse then, with little ability to separate myself from the opinions and experiences of those around me. But after my third week of caring for this woman and her daughter, after watching her come back from the OR not once, but twice, with a hemorrhaging tracheostomy site, after medicating her for persistent myoclonus that bordered on seizures, after turning and dressing her tumor-heavy body, I asked for an assignment switch. I didn’t know what was bothering me, exactly, but I knew I felt torn, and needed space to breathe and think. Likely, this was my first taste of moral distress.
Shortly after, I watched a colleague facilitate the patient’s transfer to a long term vent facility, and I quickly filed the patient away in memories passed. Then, months later, I randomly saw her daughter at a concert in the city. From my view on the other side of the hall, she looked happy and carefree, her beautiful curls pulled back into a bun, her face radiant under the blue stage lights. I wondered if her mother still lived, or if her aura was due to relief of her passing.
It took years for me to realize that my patient’s daughter did not want to see her mother suffer, no different than us. But in her own attempt at healing, she held to the responsibility of her mother’s wish; it was all she had to grasp. We were so accustomed to patients recognizing their family member’s medical futility and bowing to the advice of our physicians that we skipped something very simple in our engagement of this daughter’s decision: We never asked her what end-of-life decision she would feel comfortable living with after her mother was finally gone.
Sometimes the right choice actually looks like the wrong choice. To code a cancer-riddled woman looks like the wrong choice every time, and often it is. On the flip-side, we aren’t the ones walking out the door, carrying those last decisions with us for the rest of our lives. We move on, we forget, we care for the next mother. We must remind ourselves that each daughter never forgets, and our care of their mothers doesn’t just include their code statuses, it includes their memories, too.
A dear friend and fellow-student who is an award-winning oncology nurse said to me recently, “I will never know the right [end-of-life] answer. For each case there may be a different right answer.” And with that, I wonder: What would our care in end-of-life decision making look – and feel – like, if we chose to practice from this simple truth?