[Ann Emerg Med. 2009;54:299-300.]
Not uncommonly, we share deeply profound and powerful moments with our patients. We give news that changes life forever. We force families to make impossible decisions under the worst of circumstances. We are moved, and sometimes we cry. All shifts, though, come to an end, and we go home. Often we go home to a significant other or spouse, and perhaps children. We have dinner (or breakfast) with our families and share in their experiences at work and school. Soon those powerful moments of just hours ago are diluted away in our return to home life. Although there is no doubt some exception, most of us have a near-complete and relatively speedy recovery from even the most devastating moments we experience with our patients. One could argue that such is necessary for us to go on leading personal and professional lives that are balanced and well, and perhaps this is true. However, it is easy to forget that although our lives soon return to normal, the lives of our patients and their families are never the same, and if any return toward normalcy does eventually take place, it is measured in months and more often years, certainly not hours or days.
A recent experience in the ED brought this point home to me. In the weeks before Christmas, a frail elderly woman approached the main workstation while I was working a shift. She asked the charge nurse if she could speak with me. I was charting on a nearby computer and overheard this request. I turned her way and immediately recognized her, though I could not remember who she was or when I had seen her before. The charge nurse asked her if she was a patient or a family member of a patient, and she said no. I approached her and introduced myself. I remembered the warm smile and gentle manner, but I still could not place her. She rummaged through her purse and handed me 2 papers. The top page was a death certificate with my signature on it. She was the wife of a patient, but one I had cared for almost 6 months before based on the date listed on the death certificate. The next page was a piece of personal stationery with a floral pattern, on which she had composed a handwritten note in very small and difficult-to-read script.
I asked this nice woman if I could have a moment to look up her husband's record, and had Sergio, our superb and exceptionally kind patient liaison, escort her to our family room and see to her comfort. Using the name on the death certificate, I pulled up the medical record and read my note from the previous July. Her husband was a “bounce-back,” sent to the ED from the nursing home only 1 day after discharge from our hospital. “DNR” was mentioned in my note, as well as in the discharge summary from the day before. The details of the visit soon came back to me. Her husband presented near death in severe shock. By what was written in my note, it appeared that I had the powerful (though somewhat routine in our line of work) “your loved one is about to die and I see you have a DNR order” discussion with her. From what I remembered, her verbal, physical, and emotional response seemed to indicate she was as prepared as one could possibly be for the life-changing moment that would inevitably soon occur.
Her handwritten note to me read the following:
“Dear Dr. Wallenstein,
There is one question I should have asked you when I brought my husband in last July. He was in the ICU upstairs from the beginning of the month, unconscious for several days. Then he was put out on the floor, given all kinds of antibiotics, x-rays and treatment, then the doctor in charge said he could not stay any longer and sent him over to the nursing home. The next day, he had another spell of respiratory distress and I had the nurse call 911 and brought him to the ER. You asked if I wanted to bring him back if he died. I did not realize the significance of it, so I said ‘do all you can for him, but if he's dying, let him die.' Then in a few minutes you came back and said ‘he's dying.'
So now, after all this time, I feel guilty, tortured and agonized that I did not ask you if you thought he could get well or better, near normal, if you put him on full life support. I know your time is valuable, so I won't talk much. All I need to know is that his quality of life, if he'd lived, would not be desirable. Then I can begin to recover from the loss of the most precious person in my life, my husband of 56 years.”
There was more that came out in my conversation that followed with her that is even more powerful. Some of it is too difficult to share. Toward the end of our time together, I asked her the “why now” question that we often ask our patients when they come in with something that has clearly been bothering them for quite some time. She responded that with Christmas nearing, she had been approached by a number of friends and acquaintances and invited to share the holiday with them. With the uncertainty and guilt surrounding her decision, she could not bring herself to partake in the joy of the holiday season, and that more than anything else seemed to have motivated her visit on that particular day. How she found out I would be working that day I do not know. Technically, that information is not supposed to be released by our staff, but in this case, I sure am glad that it was.
I really have no idea how much time I spent with her in the family room. It seemed like quite some time, but when I returned to the ED things seemed pretty much as they did when I left. I, however, was not the same. It's hard to describe the feeling I had, other than to say I had never had it before and doubted I would ever have it again. There was some sense of purpose that I had perhaps helped open the door of healing. Much more powerful, though, was a deep sense of humility and shame for not fully appreciating and recognizing the meaning of that moment 6 months before. Did I really understand where she was at that moment? Did I grasp what she understood and what she perceived? Did I spend enough time? Could I have done better?
Like all shifts, that one came to an end, and I went home to my family for dinner. Although the power of that experience was immeasurable, it is already starting to fade. I am struggling to hold on to it as best as I can. The handwritten note helps.
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