I am a doctor. I take care of patients who are sometimes very ill. Death is a natural part of the process of being very ill, or very old. I accept that.
But, sometimes, it seems like there are too many deaths happening, and this weekend was a particularly rough one, that culminated in a death that hit particularly close to home. I’m a little shaken.
It started when I was “on service” over the Christmas/New Year’s two week rotation – a time that I have been the attending physician of our inpatient Infectious Disease service, called “Med-ID”, for many years, being Jewish, and not concerned with having those holidays off. Near the end of that two-week stretch, I accepted the care of a 90+ year old lady that had very clear advance directives stating that she had not wanted aggressive measures to prolong her life, and, yet, she had undergone a hip surgery a month earlier. I couldn’t understand why the surgeon, who I know and respect, would have done a surgery on a patient who was in the condition of this patient that I was seeing. She was delirious and malnourished, and I couldn’t imagine why anyone would operate on her. Until one Sunday, I came by her room to make my rounds, and she had two visitors. They were former coworkers and friends of hers. And they told me her story. She was a nurse in WWII, and had made a career after the war at the VA. She was active, and was walking around up until just a couple of months ago, when she fell and fractured her hip. So, it suddenly came clear to me why this lady, who had such clear advance directives (because she’s been nursing for longer than I’ve been alive, and she knows exactly what she does and doesn’t want), and her advance directives stated clearly that she wouldn’t want to be intubated, or resuscitated, but her friends telling me about how she walked regularly every day at the assisted living facility where she was so recently living – I could see how it made sense to try and repair her hip and return her to mobility and functionality. She had outlived all her family. Her designated decision-maker, her medical power-of-attorney, was another friend, who was also ill at that time, and feeling overwhelmed with taking control of the decisions that we were asking of her. So, we got her into an inpatient hospice facility. We switched her care goals to comfort measures only. It took a few days to get her an inpatient hospice bed (she had no family or caregivers who could bring her home), and I was told that she died two days after her transfer to the hospice. I’m not happy about her death – I feel she was cheated of her stated preferences. We did the best we could. May she rest in peace.
Next death: I was in clinic, and the overhead PA system announced that there was a call for Dr. Kuruppu. I picked up the line. It was a policeman, calling to tell me that one of my long-time patients, a man in his 40s, had been found dead in his home, and would I sign the death certificate? I was speechless. This guy had a variety of medical problems, but I had no idea what might have caused his sudden death. I racked my brains, and combed through his chart. The really odd thing was that I had, just that morning, read the note from his pulmonologist, who was suggesting that we retreat him for an infectious process that we had treated several times in the past, and I had called her to discuss his case. By the time she called me back, I had gotten the call that he’d died, so our discussion was now moot. I still can’t quite believe that he will never come back into my exam room again.
And, then, this past Saturday. I was griping on FaceBook (if you’re a friend of mine there, you’ll have seen my whine) about spending too long in the hospital, taking over the care of two sets of consultation patients, and near the end of that very long day, I ran into my colleague who told me that a girl that I’ve known since she was in 6th grade, was in the hospital (again). She was my daughter’s best friend in middle school, and through high school, but she was diagnosed with SLE (systemic lupus erythematosus), and over the course of a few years, she developed Lupus Cerebritis, a serious complication of SLE which can be severely debilitating. This young woman, with the devoted care and love of her mother, got through college, and went on to have a productive online writing career (for the sake of her privacy, I’m not linking to her articles, but she was prolific). The weirdest thing for me is that, because of her underlying medical condition, she was frequently in and out of the hospital. I have actually been one of her doctors, in the past, but, since then, I have managed to separate myself from her care. She had come into our clinic, with an appointment with my colleague, just a few weeks ago. I ended up going in, and talking with her mother, my former friend from many years ago, but we’ve grown so far apart, I don’t feel that I can really say I’m her friend.
And I feel guilty about that.
I have nothing in common with this woman. Well, not nothing. She is Jewish, as am I. That might well be the only point of commonality. We would never “hang out”. Our common interest was our daughters, who were once best friends.
And my daughter has moved forward in her life, gotten married, has a house, and many pets (too many, maybe?), and travels the world. She’s able-bodied, and has a life ahead of her.
In contrast, her daughter has been stuck. In a wheelchair. She’s done some amazing stuff – no question. And I’m sure, if I’d been a real friend to this woman, I would know just how amazing this kid has been, rather than just peeking in as a FB friend.
But, I wasn’t.
So, on Saturday, I was overwhelmed with my own workload, and my colleague told me that this young woman, this former best friend of my daughter, was back in the hospital, and I thought to myself, “OK, I’ll stop by and say Hi tomorrow. I can’t do anything today.”
And I went home, and felt sorry for myself for losing my Shabbat rest. Small concerns.
Apparently, sometime in the course of that Saturday, this young woman suffered a massive bleeding in her brain. An intracranial hemorrhage.
I learned this when I came in to work on Sunday morning, to make my rounds on those patients I had just gotten acquainted with the previous day.
I knew I needed to visit this patient, and this mom. I knew it would be painful.
I rounded on my patients, finished discussing plans with my fellow, and braced myself for my visit to the Intensive Care Unit (ICU). The ICU is my least favorite place in the hospital. I really HATE the ICU. I have huge conflicts with the ethics of what we do to extend life in the ICU. Very rarely, we do “save” someone, who then goes on to live and thrive. But, most of the time, we just extend pain and suffering, and the ICU is a dehumanizing experience. I try my best to stay as far away from the ICU as I possibly can. I hate the ICU.
When I got there, they had EEG wires connected to my daughter’s former best friend, monitoring her for brain death, and I approached her mother with the greatest of care and compassion. She did not want to even approach the notion that this may be the end. I respected that. I stayed away from that topic. We talked about – who knows??? I know that my mind was racing, as we talked, and the topic of my daughter came up. I was thinking, could I connect my daughter, who now lives in England, via Skype or FaceTime, with this young woman, lying in an ICU bed, on a ventilator, to offer some hope and consolation to this hurting Mom? This woman who has devoted the past 20 years to caring for her debilitated but talented child, and who has sacrificed herself in so many ways?
We came up with a plan. My daughter, and her husband, taped a YouTube video, filed privately, as a message to this young woman. Since the Mom was not ready, on Sunday, to accept the idea of Death, they made sure that they avoided that topic in the video. It was a positive, and optimistic message. And deeply loving.
I had no idea, this morning, whether this young woman was still alive when I got to work. I had to see patients in clinic for the first part of the day, and because of the crappy weather that we’re having, I had many no-shows, which was a bummer, as it left me too much time to think about the situation. When I finally was able to leave, because the last patient didn’t show up, I drove down to the main hospital, with anxiety growing in my belly at the idea of confronting my old friend – the Mom.
I had no idea what I was walking into.
When I got there, the Mom was threatening to call JCAHO, the accreditation commission that monitors safety and quality in medical centers. I had no idea what was going on, but apparently, they were waiting for a neurological critical care specialist to come and perform an additional test to remove the last shred of doubt about whether or not this young woman was brain dead, and the family had been waiting for this consultant since 8am that morning. It was now 1pm. The Mom was losing it. None of us could blame her. She mentioned that she wasn’t even allowed to smoke a cigarette, and I offered to accompany her down to the sidewalk so that she could smoke. I ran to get my coat (it was cold outside, and snow was still falling). By the time I got back to the ICU, someone told me that one of the nurses had gone down with her, so I went down, and found the Mom, outside, with a shivering ICU nurse who had bravely gone outside with minimal coverage, and I took her place.
At first, naturally, the Mom did not want to talk about the situation, and I acquiesced. We started talking about smoking, and about her own current health issues, and some other stuff. Innocuous. Safe territory. And, gradually, we got around to the situation at hand. Not directly. Following the Mom’s lead. She said very clearly that she didn’t want to use the word “Dead” or “Death”. Fine. No problem. And we talked about the recent death of the Mom’s own mother, and the comfort that the thought that her Daughter’s grandmother was already there, in the Heaven/the World-To-Come, to protect and welcome her Daughter, who was teetering on the edge of life and death (but, we won’t use that word, right?).
We walked back up to the ICU. I had offered, a couple of times, to show the video that my daughter had made, and initially, the offer was politely but firmly declined. I understood. I didn’t even know that it was a good idea for anyone at this stage of the game.
We arrived, again, at the ICU, and I was preparing to say goodbye, and go back to my own work, and the mom said – get your iPad, and show [my daughter] the video from [your daughter]! A little surprised, I did so.
I made sure that I had the video loaded and ready, and I entered the ICU room. There were a few folks in the room, but The Mom took charge, cleared everyone out except for Mom’s old friend and Mom’s husband, and then, she abruptly left the room herself, saying “I don’t have the strength to watch.” So, I approached the head of the bed, and the Father was on the other side, and I hit play. My daughter’s voice, very calm and cheerful, introduced her husband, their pets, and ended with words of hope for her recovery and for a chance to get together again. The message was just under 2 minutes long, and about 20 seconds in, the Friend, who initially was behind me, quietly came around to the top of the bed, above the Daughter’s head – so that she could see the rest. I watched the Daughter’s face the whole time, knowing that I would not see any response, but having the tiniest hope that I might see some indication of recognition. Of course there wasn’t. It’s funny, isn’t it, that even when we deal with Death professionally, and know the medical situation to the extent that we know with certainty that all hope is gone, hope persists in the human heart. Even in a cynical heart like mine. I’m sure that is a good thing.
When the 2 minutes ended, I said a few words to the daughter, really directed at the ears of the Father and the Friend, knowing that this whole scene was going to be relayed to the grief-stricken Mom, and hoping to tread that fine line of realism, but not removing the notion that the Daughter might be able to hear, or comprehend the message.
Mom came back in the room, and the neurologic consultants had arrived, and I sat down at a computer in the ICU work area to do some of my documentation, and to be available if any further friendly support was needed. I chatted a bit with two of the chaplains from the hospital, one of whom I had heard about but never met. I knew that the chaplains had been involved for a long time, over the many hospitalizations, and near-Death illnesses that this Mom and Daughter had already survived.
My fellow paged me to say she was ready to see the rest of our patients, and I popped my head back in the room to let the Mom know that I would be back a little later. I went on with my work through the afternoon, and a couple of hours later, I returned to the ICU.
The room was empty (it always amazes me how quickly an ICU room can be cleared, but it has to be rapid, as I know from the side of the impatient doctor with an unstable patient on the floor, who needs that bed – there’s no time in the ICU for mulling over the passing of Life). The desk clerk told me that the Mom was talking with one of the doctors in the lobby, and I vaguely thought I would head that way, not really sure if I had any comfort to offer at this point, or if she would even want to see me. As it happened, just as I left the ICU, I saw the Mom, the Father, and the Friend slowly approaching the ICU, headed directly towards me. Mom preempted me, and clearly didn’t want words of comfort, condolence, or any mention of her Daughter or Death. But she did want me to thank my daughter – she had heard from the Father and the Friend how lovely the 2 minutes were. In fact, that’s the first thing she said to me was “It was a lovely 2 minutes”, and I thought she was referring to the two minutes that may have passed between the time the ICU team turned off the ventilator, and pronounced the Daughter dead, but it wasn’t that – it was the 2 minutes of video from my dear daughter (and her husband).
Mom said to me “I don’t think we’ll ever see each other again.”
And, I feel badly that I can’t offer her more support, but it’s true. We’re not friends. And I’m really glad that she has a good and supportive friend. And I hope she has many friends who will support her. I’m worried about her. I can’t imagine how she is going to move forward, after devoting all her energy and focus to one project – keeping her daughter alive. I hope that she will find a way to move through the grief to a point where she can avoid self-recrimination, and feel joy and hope again.
So, this death, for me, was tough. I fully recognize that I am a very insignificant player in this event. I was not the doctor, so that role, which I know and am familiar with, and offers a certain distance of professionalism and acknowledgement that there is no emotional connection, or if there is, it’s of a very different kind of connection. In fact, I did observe the interaction of one of the long-time doctors involved in the Daughter’s care, and I know that the presence of that doctor in the process, before the absolute End, was very important in the Mom’s acceptance of the reality that she so desperately tried to avoid.
I was not family.
I was not even really a friend. I’m just the mother of an old friend. Barely an acquaintance, really.
But, I have memories of my daughter and her daughter playing together, being silly together, dressing up and doing each others hair. They were best friends from 6th grade (I think) through high school. They were both a little goofy, outside the main social circles, but I always respected both of them for their lack of interest in “fitting in”. They both danced to the tune of their own drummers, and they accepted each other.
The border between Life and Death is a mysterious one, and yet, it passes in just an instant, and then, all of a sudden, the person is Gone.
And the Living move on.