“You can educate people and you can tell them about it, but until they experience it, they won’t know…you have to have been out there in the trenches to know what reality is. It’s real that you are a major decision maker. It’s not real that the doctor is always right.” – Quote from Catherine Hough’s article.
Building off of my last OpenThink article, I want to look more closely at one aspect of interdisciplinary decision making: how caring affects our decisions. Consider the generic example of a patient who might be admitted to the intensive care unit (ICU) for a devastating injury; maybe they have a cardiomyopathy and now require a heart transplant, or perhaps a sudden intracranial hemorrhage has left them brain dead. Many patients admitted to ICU for these types of circumstances end up on life-support, despite reaching a physiological status that is not compatible with life. Both life-support and cardiopulmonary resuscitation (CRP), as depicted to the general public on television or in movies, is portrayed as being life-saving, when in reality, CPR is much more aggressive and damaging to the body than is understood, and hypoxic brain injuries often occur. This leaves patients “alive” in the bed, having resumed their breathing and heart function (often with the assistance of machines) but they will still suffer organ damage and may die shortly after. These types of situations can be the result of extreme moral distress, difficult conversations, and delayed decisions.
The eventual outcome of these cases is sometimes medically predictable, i.e. that the patient will die, or is already considered brain dead; however, it is not always clear when, or exactly how this might occur, or by what means. Who will eventually “pull the plug” so to speak? What if the patient can survive but will be severely impaired? Sometimes continuing to care for patients who appear to have no future can be more distressing than letting them go. Technological advancements in medicine have allowed us to continue giving care to patients despite there being no real outcome of health and wellness at the end of such processes. This fact puts providers in a position of feeling like their actions of “care” are not helping, but sometimes hurting patients. We need to stop and decide what “care” really means to us. Do we consider “care” to be providing patients with a good death (i.e. one that reflects a patient’s values and wishes), or is “care” a provision of all services that are available to us, in order to hold onto life at any cost? Medical providers are taught the ins/outs of how to administer medical technologies, but there is seldom time to discuss the appropriateness of specific treatments, or the applicability of such interventions for complex cases.
Specific words can carry a lot of visceral meaning behind them. In one such instance I have heard many ICU nurses refer to such ongoing futile care as “torturing” a person for a period of time until their death. One nurse describes the care of a young female patient as something she regrets to this day, recalling the patient’s body deteriorating in the bed to the point where her skin would come off in your hands when turning her over. Such patient fragility is difficult to come to terms with, as staff try to help the patient, and family simply watch and wait. No one wants to be the bearer of bad news in these situations, and it takes an extreme amount of courage to tell someone there is no hope, or that care is futile. This is something intensive care providers have had to practice and become intimately familiar with, and without a doubt, every provider will have their own style of introducing these topics to family members gently. Beyond the sheer difficulty of telling someone that their loved one will not make it through the week, there are so many other questions that arise in the meantime. The entire ICU team has to decide when to run further tests, how to interpret them, when to administer further treatments (or when to discontinue them), and when to stop all interventions entirely.
In Hough’s article, one nurse recounts how shocked she is to witness the sympathy and understanding she receives from the ICU physicians when they finally stop to discuss the aggressive care that is being given to her patient. She realizes that because they were not fully aware of what she was experiencing with her patient, they did not share her distress towards caring for them. The nurse plays a particularly important role in ICU as part of the team, as they spend 24 hours a day taking care of their patients’ needs, intimately discussing their status with family and friends, partaking in daily rounds, communicating with residents and physicians, and helping to update anyone who might have questions throughout the day. Despite the fact that nurses spend most of their time with the patient, there is a long and gendered/hierarchical history of nursing knowledge being either discredited, ignored, or even silenced. This is not an overt disrespect towards nursing staff from physicians or residents because they may not even be aware this process is happening. This phenomenon is referred to as testimonial injustice, whereby, due to an internal prejudice held by the listener (e.g. believing that nursing is a more lowly profession) they may unknowingly and unfairly give a diminished sense of credibility to that persons report.
Ultimately, it can take courage from nursing staff to be vocal about their concerns, and then even more work to make sure those concerns are both heard and believed. I would argue, that one aspect of nursing care that is sometimes ignored, but that is of fundamental importance, is the emotional aspects of care. Hough writes that in “Kohlberg’s theory of justice ethics the decision-maker searches for agreement, [whereas] with Gilligan’s care ethics, the search is for understanding.” In other words, we can look only at the cold hard facts of a case and hope to find agreement on what we think is “right” (which is not always clear), or we can seek to better understand those facts in light of the salient ethical features of a case, and seek to describe the experiential aspects of giving or receiving care. Much is written on medical narrative in ethics, however, at the bedside, most conversations are kept to medical facts and paperwork, which leaves behind a missing piece. I would describe that missing piece as a sense of understanding, as well as feeling wholeness in our conscience after having end-of-life conversations. This is an aspect of care that is not fully achieved by abiding by principles and algorithms alone. We must acknowledge the ineffable aspects of end-of-life care and attempt to feel the emotions around what is happening, and honor the process of caring for those who are dying.
I was recently told by a close friend that “justice is not something we seek in order to have retribution for what was done to us, justice is an action towards someone, whereby we do the right thing to begin with”. In other words, we act justly, we do not seek to have justice done, because after an action has occurred it is too late to change it. I like this way of viewing justice, because it reminds us that the ways in which we care for patients is inherent in our way of being. We act in a caring way because we genuinely feel concern and empathy, not only because we go through the correct motions. There is so much about critical care medicine that is not said aloud, that is not verbalized, but is only felt through visual and emotional experiences. I fully believe that there is power in these emotions, and that there is genuine knowledge to be discovered by feeling them. If anything, there is understanding that is gained between individuals when these emotions and perspectives are fully put on the table, which can lead to richer discussions and more empathetic responses from the entire team. This aspect of giving care needs to be part of our decision making strategies, not shamefully hidden in breakrooms, discussed only on night shifts, or through tears in the comfort of our own homes.