1.1: Approach the care of patients as a cooperative endeavor; integrating of patients’ concerns and ensuring health needs are addressed.
During medical school, I have had several encounters with end of life care, and they have been some of my favorite experiences in medical school, and a good way to track what I have learned about shared decision making, and deeper questions of mortality and death we face as physicians. My first year, I met several patients at the VA seeking out living will advice. Utterly out of my depth, I wasn’t doing the talking during those sessions, but I was keenly aware of the coming need to be able to explain how to die to people much older than me. Or at least, the parts of how to die that they can’t answer for themselves, the quotidian details of the differences between living wills and MOLSTs and DNR-CCA vs DNR, not whatever larger interior or spiritual questions they have for their own gods and families and souls. Of course, the details of such a momentous time are important in their own right, and their correct resolution gives patients more time and space to reflect on the deeper mysteries. If these details are in doubt or not resolved correctly, it can lead to tragedy.
On hematology service during third year, I saw what happens when things go wrong. A patient who had stage IV leukemia and end stage renal disease was on our service, and, as the week progressed, things took a disheartening turn as his kidney function deteriorated he headed for multiorgan failure. He was off dialysis, and initially did not want to go back on. However, he had a family meeting which I was not present for, where he was apparently convinced to give dialysis another try after previously deciding to opt for comfort care. The next morning, as one of the residents was putting the dialysis line in, he became bradycardic, followed by losing his pulse and coding. He got CPR, but they were unable to achieve ROSC and he died. He had just been talking to his family, and they had to be hurried out of the hallway while the code happened. It was a violent way to die, and traumatic for his family. I reflect on this often, comparing this to another situation with a vastly different outcome I witnessed in the SICU. He had had a similar downward spiral, getting hospital acquired pneumonia following a surgery, resulting in several intubations. He did not want to be intubated again, so a family meeting was called, and together they made the decision for him to go to hospice. Following the meeting, the family gathered around his bedside in the SICU, sharing memories and enjoying the time they had left together.
The contrast between these two experiences is going to stick with me for a long time. I don’t know what happened in the family meeting in the first case, but that patient had terrible luck, gambling and losing on a play for more time. I recently read a book called Being Mortal by Atul Gawande, a succinct voice in the swelling argument for a change in end of life care in the US from focusing on doing everything possible to emphasizing hospice and comfort care.
Dr. Gawande’s approach puts an emphasis on balancing quality and quantity of life in a matter ideal for each patient. This is not the standard US culture surrounding severe disease care and end of life matters, which often casts disease as a “fight” to be “won” at all costs. Many patients, if asked, are going to want everything done for them, and I know that I won’t always agree that’s what is best. I think this poses a challenge to me in the future when I’ll be facilitating shared decision making: how do I present information neutrally to patients, indicate my recommendation, but not make them feel like I’m pushing something on them? What is the line for advocating a position vs pushiness? I think that is something that I’ll have to keep in mind during my career that will come up in places that have little to do with end of life care, and the line will probably differ by patient and situation. So, I need to be sure that I am attentive to the feedback of my patients and mentors during these situations. That is why I will be sure to reflect on them as they happen, and work to use anything I learn from this reflection during all interactions in the future.
Goals:
- When a patient indicates some dissatisfaction or negative feelings towards a shared decision making interaction, I will take ten minutes at the end of that shift to reflect and think about what happened, and how if there are any specific ideas from this experience to keep in mind during future interactions.