Reflections on Death and Dying: my first month as an intern

I still remember that particular English class. This was back in Grade 9, in South Africa, where I grew up. My English teacher wanted to do a stream-of-consciousness creative writing exercise: she told us to close our eyes while she led us down a long, cold, empty corridor, passing multiple doors which our imaginary selves decide not to explore. We finally come to the end of the corridor, finding an imposing door, unlocked. We reach for the doorknob, swing the door open, and enter.

Perhaps it was the tone of voice my teacher used, or maybe it was the chill we collectively felt as we envisioned walking down the ghost-like passageway. But, I remember – as we volunteered to read out our essays – almost all of us ended up writing about a sad experience. I wrote about my grandfather’s burial, which I had attended when I was five years old. As a teenager, preoccupied with the stresses of growing up, I hadn’t yet devoted much time to thinking about the larger questions of life and death. Although I hadn’t consciously thought about it, I realized then, as I reread my essay, that I had internalized my grandfather’s death, and that it had stayed with me through the years.

During medical school, I recall encountering death only a handful of times, but always at a distance. On my internal medicine rotation, a patient who was about to die was ‘handled’ by the resident and the attending before being sent home in what was conveyed to be “a spirit ambulance”. I heard physicians using the all-too-familiar gallows humor, part of what’s known to be the ‘hidden curriculum’, joking between each other “not to kill patients” and discussing patients nearing “celestial discharges” - but I never actually saw anyone die. Looking back, I always seemed to be held at arm’s length from the process of death, almost as though I were being shielded from it. For instance, as medical students we didn’t routinely rotate through the sickest oncology wards. Even during a surgical ICU rotation in my fourth year, I never followed a patient who ultimately died while I was on service. Perhaps it was my naïvetée, or just the collection of experiences I had happened to have as a medical student, but even as a fourth year I still believed that death was a rare event in the hospital, hushed.

In retrospect, it’s possible I should have taken more initiative. I knew all healthcare professionals had to consider death, and had to have code-status discussions. These were handled by the intern or the resident when I was a student. I was never encouraged or asked to have the conversation myself, nor did I really know how to. While we had spent hours practicing how to elicit the history of present illness (HPI), learning how to convey bad news to a patient, interjecting our conversations with sympathetic statements to make our patients feel better – my formal education never did include learning how to discuss the case of death with a patient. While we learnt how to do CPR, we were never taught the best way to ask a patient if they wanted CPR done; while we learnt about auscultating lungs or about ventilators, we never discussed how to ask whether a patient ever wanted to be intubated in the first place.

The orientation week of my intern year, just a month after graduating from medical school, went by in a blur. I remember we had a five-minute discussion on handling death, and it entailed making sure we filled out a death certificate properly. I speculated about how I would handle that first patient death, when it came. I didn’t expect it to happen soon, or too often, given my prior experiences – or rather, lack of experiences.

I quickly learnt otherwise. I started my first month as a doctor in the medical ICU (MICU), taking care of (presumably) some of the sickest patients in the hospital. In that month alone, my three co-interns and I collectively witnessed three deaths. What I think we had to learn quickly was how to deal with the deaths both emotionally and mentally, remaining stoic in front of patients as did our more wizened residents – and yet taking time to be human: to mourn, to pay our respects, all while being urged to take care of what I felt to be the administrative aspect of the deaths, such as filing death certificates, making sure a summary of the patient’s course before death was in the chart, speaking with the organ donation bank, and so on.

But perhaps what has interested me the most has been the discussion of death before it even happens – whether the death is imminent, or extremely unlikely. We were required to discuss code status with all patients as they were admitted into the ICU. After watching my resident end the patient interview with a code-status discussion a few times, I felt I was ready to follow suit. It became almost robotic, in the same way the rest of the patient interview had become for me. Did the patient want CPR done in the event their heart stopped? Did the patient want a tube down their breathing pipe if the medical team felt that they (the patient) needed help breathing? Yes/No, Yes/No. Depending on their answers, the output was either DNR only, DNI only, DNR and DNI, or Full Code. I thought I knew the meanings of all these terms; it seemed simple, straightforward, mechanical.

These discussions were usually concise. Perhaps I am just excusing myself, but I just felt pressured to get an answer – any answer – and move on. In-training residents, busy and exhausted, have a lot on their plates and, especially at this time of year, what feels like little time to take care of it all. But often, I’d stop: there was more to it. Some patients told me they had already thought about the issues and didn’t want any form of resuscitation. Often, when asked why, they would explain their fear of ‘living as a vegetable’ for the rest of their lives. Some were scared of broken bones and being so disabled after being ‘brought back’ that the amount of time spent in rehab would far overshadow this second life. On the other hand, I had many patients who, for whatever personal reasons, had either not discussed these issues with their loved ones, or who might not have even allowed themselves to think about the issue. On a few occasions, I had patients turn to me and ask me my thoughts. I can’t tell them what to do, I thought. The best I was able to provide was to elaborate – and the best I could come up with was to explain what CPR entailed, and when and why we would consider intubating a patient. These explanations barely touched the surface of these deep (and life-altering) issues.

There was much more I could be doing. And there was a lot more that I realized I – and other physicians – needed to know. Did I (we) truly understand all of the terms? Apparently not. One day, I read in a patient’s chart, written by a physician: “Patient is DNR, but can use fluids to resuscitate.” I was originally explaining to patients that when we resuscitated them, that would mean we would perform CPR. Well, this doctor’s comment reminded me that in medicine, we use the term ‘resuscitate’ when we refer to giving a dehydrated patient fluids or blood products, in addition to the conventional CPR usage. Is this something we should be explaining to patients? Another example: one night, when I was taking care of someone else’s patient who I was told was likely fatally sick, I was told “The patient is DNR/DNI, but does not want use of pressors or anything invasive”. I knew that patients who were close to dying would be made CMO – comfort measures only – where the patient would receive nothing but palliative pain medications to (hopefully) remove pain, and nothing more. How is the decision made to change the status from one to the other? As physicians, we treat them as two separate islands, when in reality there exists a large grey ocean between DNR/DNI-land and CMO-land. How do we convey this to the sick and dying patient?

In contrast to my (in retrospect) simplistic code-status discussions, there were several instances when my attending would repeat the discussions the morning after: probing a little deeper, having a longer and more in-depth discussion – something years of experience afforded an attending. And it was these conversations that often revealed that neither the patient nor I truly understood the nuances of all of these terms. One attending in particular, recognizing the DNR/DNI patient who was afraid resuscitation would do more bad than good, helped the patient visualize circumstances in which the patient, otherwise healthy, would need ‘minimal’ resuscitation – and could go on living a healthy life. “What if you choked on some phlegm – if we did a little CPR, you’d cough it up, and you could live another forty years,” my attending said. “But if you were DNR/DNI, we’d have to stand back and watch you die. Is that what you want?” The patient changed his mind and made himself Full Code after that conversation. I realized after this happened a few times that my attending would go out of his way to have these conversations with the younger patients – those in their fifties or sixties, who had the potential to live long (supposedly) healthy lives after their care and thereby supporting my attending’s view they should be Full Code. And yet, from my perspective, they also had the possibility of staying in the supposed ‘vegetable’ state for many years, which was why I understood the patient’s reasoning for not wanting to go down that road in the first place. Maybe I felt uncomfortable with the feeling I had that my attending was pushing a patient to change his mind. Or perhaps it didn’t sit well with me that our overall attitude was to do as much as possible – and only if everything didn’t work, we would back off.

Psychological and ethical studies (such as the famous trolley problem) have shown us that there’s a clear difference between actively doing something versus passively allowing something to happen. We were being the activists: be Full Code now, we seemed to advocate, and if things don’t work out, we’ll back off later. Is that something each patient would want? What if the patient’s religion, culture and background don’t support the do-all take on medical practice, on sickness and cure? Another thought: does the patient, who changes his mind under pressure and (mild) confrontation, fully understand the subtleties of active and passive medical care?

What my attending emphasized, regardless, was that these were not static decisions – should the patient become worse, and full recovery was less likely, then the discussion would be revisited. “This is a moving target,” as my attending said. And my experiences proved this to be true. But how ‘competent’, to use the legal term, is the sicker patient (or the patient’s family)? Can they truly make a decision at that point, and does that new decision really reflect the patient and the family’s wishes? Could this be said of the initial decision, when they do not know what could potentially happen?

My questions are endless. What is the best way to do the code-status discussion? Is the simple explanation – to resuscitate or not to resuscitate? to intubate or not to intubate? – the way to present this extremely complex issue to the patient? Is that even fair, given that even physicians don’t seem to agree on what we mean by ‘do not resuscitate’? Or rather, should these be the way we enter into the discussion, as a means to allow future conversations on the topic? Are we skirting the real issues with these simple questions, not really allowing the patient to understand fully the subtleties of the questions we are asking? By not addressing the issue in full, by not ‘burdening’ the patient with all the issues, are we being paternalistic as physicians? Do we have time to go into in-depth discussions, check-lists, and questioning with every single patient?

I don’t have a good answer for these questions, except for the last: unequivocally, yes. This is literally the life-or-death question, so yes, of course we have time to discuss this vital issue. We must make time for it. What I still don’t know is how best to do it. I feel now, as though I am just checking off a box: I have to ask this, I tell myself, and make sure something about this is written in the patient’s chart. . Reflecting back, I wish my four years of medical school had prepared me better for this. I wish I had had prior practice with this difficult issue, in the same way I had opportunities to tell patient-actors in my medical school classes that I had bad news for them.

Despite the fact that death features in all of our lives, at least in this culture, we are uncomfortable speaking about it. As physicians, we should be the most comfortable speaking to our patients about it. It shouldn’t be a repressed memory, like the death of my grandfather was. It shouldn’t be a question that’s mumbled, quickly, to get it out of the way. It needs to be handled, broadly, openly, by all physicians. We need to learn how to convey the complexities of the decision without scaring the patient; they should be feeling empowered through being involved in this decision. We need to decide when is the right time to speak about these issues, and how patients and their families handle the discussion in the course of their illness. Maybe it’s time we readdressed what our code-status terms mean: is it right to compartmentalize patients into these code-status boxes, when clearly there is a lot in-between – and for that matter, when as physicians we can’t always agree on what the terms mean in the first place. Maybe they’re not the right terms. Maybe we need to throw them out and start from scratch, and agree on new terms, even if they are more expansive. The bottom line is: I think it’s time that we started discussing death.