I have a confession to make. I had never seen someone die until I was an intern. As the daughter of first generation immigrants, I had little contact with my grandparents who lived in India when their time came. During medical school, I had a lot of patients but never had a patient die while I was taking care of them. I was reminded of this last week during three unrelated presentations that all converged around how to ensure that people’s wishes regarding how they want to die are honored. That is when I had a flashback to my internship – to the first person that I had to pronounce dead.
It was July on a busy inpatient oncology service and month #1 of my intern year. It was daytime and I got a call from a nurse about a hospice patient who had end stage multiple myeloma who had presumably died, but they needed me to go pronounce the patient dead. So, I went to the bedside and the husband of the patient was sitting quietly at the bedside. I introduced myself and thought – okay I’ve never done this before but I’m going to do a physical exam and note the absence of a heart beat, pulse, respirations, and neurologic function and then I would be done. I started by listening for breath sounds – none and no air movement in the chest. Then I put my stethoscope on the chest and heard nothing. That was erie…it dawned upon me that I was in the room with a dead person. I started to feel hot. I raised the patient’s eyelids and shone a light into the eyes and again nothing. At this point, I definitely did not feel like myself and my mind started to race as I was thinking how could I have gotten here without ever being in the room with a dead person? Fortunately, sensing something was wrong, my attending and co-intern came to my rescue (our resident was off). My attending escorted me out of the room with her arm around me and said you’re going to be okay and my co-intern brought me an orange juice so I could recover. I felt so embarrassed.
How did I get through without medical school without knowing how to pronounce a patient dead or have a family meeting? Does this happen to medical students today? Well, the three unrelated presentations I heard last week about how to improve how we train doctors about death and dying convinced me that at least change is on the way.
- Training first year medical students to follow a dying patient First, today’s medical students have a lot more substantive experiences with death and dying then I did. At a recent morning breakfast meeting of the Academy of Distingished Medical Educators at Pritzker, Dr. Stacie Levine, our fellowship director for geriatrics and our new palliative care program, describe a new longitudinal curriculum for palliative and end of life care for medical students. In addition, she launched a very new and innovative program for our first year medical students to be trained as hospice volunteers. Students who chose this option are making home visits and even receiving pages to participate in a “death watch” when the patient they are following dies. They also reflect on the experience through journaling and discussion.
- Improving resident discussion of advance directives with clinic patients While hospice can be one path to a ‘good’ death, any resident knows that a major barrier to hospice care is that families are not often prepared to make such decisions when their loved one is in duress. In fact, most residents encounter death through family meetings for patients who were hospitalized with terminal illness or when continued care, usually in the ICU, appeared futile. These were difficult discussions since often times the patient was unable to participate due to their grave illness and had may or may not have discussed their wishes with their immediate family or next of kin. This was one reason that the residents, as part of their required ambulatory quality improvement curriculum, chose to improve the documentation of advance directives and identification of a surrogate decision makers for clinic patients that were above 65 years old. Through earlier identification of surrogates and documentation of advance directive discussion, it is the hope of our residents that these things will be easier when patients are near death. They have good reason to believe this. A recent article in the New England Journal of Medicine demonstrated that patients who had prepared advanced directives received care that was strongly associated with their preferences.
- A new way to discuss end of life preferences with families Lastly, I attended our Department of Medicine Grand Rounds last week which was given by Dr. Dan Sulmasy who happens to be a Medical Ethicist, an Internist, and a Franciscan Friar! He eloquently described the problems that surrogates face when forced to make decisions for others. Instead of the familiar concept of ‘substituted judgment’, where the surrogate has to make a decision on behalf of the patient, he argued for a new model which relied on ‘substituted values’ and ‘best judgment.’ Basically, he presented convincing data that shows that surrogates don’t always make the best decisions for patients but they may be able to tell you what the patient valued. It’s also easier to ask a distraught family member to ‘tell me about your loved one and what they believed in.’ In other words, you will hear the patient story. Once you have a good understanding of the values, then you as the physician can offer the clinical information about the patient including the prognosis and then work with the family member to arrive at the ‘best judgment’ for the patient. This method still had not been tested but has been highlighted as an alternative to the traditional model. It could also serve as a new way of teaching doctors how to conduct family meetings. In fact, our fourth year medical students have been learning how to do family meetings through a team simulation through a new Transitions to Internship Course.
With all of this activity around death and dying in one week culminating in Memorial Day, it was only natural to reflect on my first experience with patient death and how unprepared I felt. With the focus on death and dying in medical education today, I hope that future doctors will be more prepared for these experiences than I was.
–Vineet Arora, MD