When Moral Uncertainty Becomes Moral Distress

This narrative is really for me about a process of discovery, it begins with a discrete event of moral distress, but it certainly does not stop there. It really represents for me a transformative moment, radically altering my career path, and changing how I define medical wisdom and judgment. The day it occurred I arrived at work to find my list had been altered rather significantly; the first case in my room was to be an organ donor, which in and of itself was not too unusual. What made this case very different though, quite beyond the experience of the team, was that we were dealing with a maternal case of brain death with a still viable, but extremely premature fetus. Questions arose in my mind. This fetus was too young to be delivered now, but had the possibility of trying to maintain the pregnancy been reasonably explored? Would that have been an option this mom would have chosen? Had the father been offered the opportunity to consider this? All would seem to be important questions for the team to consider. What really struck me that morning was despite the unusual circumstances of the case, the complexity of the case, the lack of expertise with regards to the uncertain clinical and ethical dimensions of the case, there had been no “ . . . heads up, just thought you should know that . . .” phone call the day before. The head of the intensive care unit had not been informed either, so I was certainly not alone in being out of the information loop. I should make it clear that the nature of organ donation is such that these cases takes hours to organize, to find recipients, to mobilize the necessary teams for harvesting, so organ donation is not an emergent case. Given this lag time there was certainly time to not only inform the team, but given the unusual circumstances, time to initiate a more comprehensive consultation process, a consultation process that could have ensured that the ethical and clinical dimensions of the case had been reasonably explored. Of course by the time I had arrived that morning the teams were on their way, there now was an urgency to get the donor to the operating room.

I felt unease about the case, and questioned the nature of the consent provided by the family. Were they made aware that choices had to be made? Did they understand that there was a paucity of evidence regarding these choices and that in these circumstances they need to make a decision that best reflects the wishes and values of the patient? My questions regarding the consent went unanswered so I asked for an ethics consult (I was surprised that this had not been done already, given the complexity of the case). This request was unfortunately denied, the explanation being that the family had already signed a consent. Maybe I failed to be clear in my request, that it was the circumstances and informed nature of the consent that I was questioning. Here, I admit I was beyond my experience, I had never had reason to question a signed consent form before, and maybe it was this lack of experience that impacted the request and hence led to the denial. Maybe the ethics team was satisfied with the consent, but they did not communicate why they were satisfied and so I felt that I was still left with reason to doubt the moral support for that document.

I am prepared to deal with moral uncertainty in the tertiary and often quaternary care nature of my practice. We often are called upon to make clinical decisions without all the relevant information in terms of risk and benefit. What makes moral uncertainty something that we can come to terms with is the knowledge that the patients can at some level understand this uncertainty and trust in the decision–making and advice of the team (and team, in the face of uncertainty and complexity ought to be broadly construed). There needs to be an acknowledgement of the necessary time and space for adequate reflection for often these decisions are irreversible and we need to ensure that options are fully explored and values respected. The decision making in this instance felt rushed and failed to solicit the advice of the broader team. The result was that many clinicians that day felt morally distressed. What was my reaction to that moral distress? It best can be described as isolation, although I was active member of the care team to be involved, I felt I was relegated to being a quiet bystander, a technician expected to provide the skills, but not the critical reflection, which I still feel makes us physicians. I wasn’t the only healthcare worker on the team that day that felt distress, but the circumstances that day made me feel rather alone. A few of us removed ourselves from the care team that day. My decision to do so stemmed from my uncertainty but also from my belief that my actual distress would impact my ability to provide care, my feelings of isolation from the team impede communication in some critical fashion. My actions certainty registered vey publically my distress and some probably felt it was unprofessional, but I believe going forward to provide care under such circumstances would have been truly unprofessional.

So feeling like I actually did nothing that day for the patient, I went home with a different type of uncertainty, uncertainty about my future in clinical medicine; whether I actually was a good fit for the career I had chosen. I felt wholly unprepared for dealing with either the situation as it arose and unprepared for the conflict between the personal and the professional within me. After being informed that no interdepartmental rounds would be considered; the sense of isolation from the hospital leadership also grew. There were no formal reprimands but there was also no acknowledgement of any possible existence of moral uncertainty. There was no avenue provided to clear the air and engage the staff in a process that allowed us to learn from this experience, to hopefully do better in the future, to gain collective wisdom.

It was moral uncertainty combined with an urgency that was created, that we created, rather than an urgency that was uncontrollably thrust upon the team. A perfect storm of uncertainty really, a rare situation, with conflicting moral obligations and an urgency that led to a decision making trajectory that failed to fully explore the implications of these conflicting obligations. The decision that day may in fact have been the correct one. What concerned me was the certainty that effectively shut down ethical reflection and may have limited the ability of the family to consider the values of the patient and how that patient might have defined best interests and perceived moral obligations. Considerations that might have impacted the decision making that day. It is precisely when uncertainty arises that these considerations carry even more weight and can provide critical guidance. I worried that day that the created urgency did not provide an opportunity for the family involved to take the time to reflect on these considerations. With the appropriate time, the family may have still made the same decision. I felt the process did not serve or acknowledge moral uncertainty that day. I was left with questions, with distress that the uncertainty wasn’t fully disclosed and best interests perhaps not served.

Moral uncertainty is common, but it is the evolution of this to moral distress that you have asked me to discuss. Moral uncertainty becomes distress when you think that you are alone in this feeling, when avenues for open discussion either do not exist or the questions that are bothering you are not given serious consideration by either your colleagues or the hospital administration. It becomes moral distress if there is no forum to discuss, to debate and perhaps even more important, to give pause. It does seem sometimes that in our rush to “do” that we create an environment that stifles the healthy expression of uncertainty. This rush “to do” must sometimes take precedence, there are times when it is most reasonable to in fact intervene in the face of much uncertainty, acknowledging and accepting that the “we ought not have” might become apparent later, that with more facts or more discussion of best interests we conclude we ought to change the trajectory of care or withdraw altogether. This is the reality of clinical medicine. There is often an urgency that directs us to get a job done and pause for more critical thought later. Again these instances of moral uncertainty do not necessarily evolve into distress.

Moral distress occurs when we fabricate urgency, when we create a situation that brings about an unnecessary urgency and in doing so we shut down the normative dimension of our decision–making. This is where we risk failing our patients and failing ourselves. This is where we really lose sight of the goals of medicine, which are to provide the best and lacking the necessary knowledge to help inform what is actually best, to provide the most reasonable care for the patient in front of us. Providing the time and space for ethical dialogue not only serves to alleviate a lot of moral distress, but the richness of this dialogue can, I have learned, not only serve to alleviate a lot of moral distress, but the richness of this dialogue can create an environment that is both patient and caregiver focused. An environment that invites questioning, that enables expression of uncertainty is an environment that also facilitates critical reasoning and true learning. It is an environment that fosters clinical wisdom.

Of course what I have just written is the result of a process of discovery and learning that I necessarily embarked upon. I have come to make some sense of and make peace with moral uncertainty. I have become more confident in admitting that true clinical wisdom is a state that we reach when we admit what we do not know. I have gained some confidence and ability to have conversations regarding uncertainty with my patients, some of this I have gleaned from wise mentors, but most I have gained from the best teaching a clinician can ever ask for, from my patients and their families. I am however, still an apprentice in these types of conversations. However, only by continually engaging in honest conversations about uncertainty do you have an opportunity to gain the tools and language to do so with a facility that enriches uncertainty. A lot of bumbling about, struggling to find the correct words combined with a lot of understanding from patients and eventually you achieve a level of ease with this type of disclosure, a disclosure that ought to engender trust and help build a decision making process that is shared and moral; mutually respectful of patients and their professional caregivers

There is no escaping the fact that I could have done better that day; better for the patient, better for my colleagues and better for myself. The questions I continued to ask myself were what would I have changed if I could, what could have been done to do better, and what could I do to better prepare myself for dealing with such a case in the future? Well past experiences with feelings of being inadequate were always assuaged by practice and learning, this approach had always worked for me so that is how I dealt with the aftermath of this event. I decided to gain at least competence and hopefully expertise with regards to the nature and normative dimensions of clinical uncertainty. I undertook graduate studies in healthcare law, moral philosophy and philosophy of medicine. This radical change in my career is the direct result of this case. I still practice tertiary care, and what often seems quaternary care, clinical medicine, but I also pursue this academic interest. I now spend my nonclinical time in clinical ethics, consultations and education, it is my way, at least I hope, to provide venues for open discussion regarding clinical and moral uncertainty. This is for me a positive aftermath of moral distress.

So in a crazy way I am thankful for that event, where it has taken me. I believe many, if not all of us in medicine will have encounters with moral distress, many more than once, and at very different levels and kinds of experience. This event was isolating and made me question not only my place in clinical medicine, but also caused me to question the goals of medicine. The journey it led me on has been one of clinical and personal discovery. I believe I am a better physician and a better colleague, hopefully also a better person because of it. I approach the grayness of medicine with much more respect and humility, I search for what is reasonable, realizing that perfect and best can lead us astray and can cause inadvertent harms. I love what I do, but I love it more now because I know it is right to question what I do.