Learning how to say goodbye

I have many patients. I genuinely like each of them. I have no idea why or whether it is right or wrong, but I have developed deep friendships with some of them. One of these patients has come to the point in his life and his illness where I have nothing left to offer in the way of medicine. That is, there are no drugs, devices or procedures that can alter the course of his illness. We knew this time would come. We have even discussed it openly both in the office and outside. I was not sure how I would feel when this moment came. I knew I would be sad. I expected I would be frustrated by the fact that I am now no longer able to "treat" him.

I've had many patients die over the years. Each week I attend on the inpatient service, I sign one or more death certificates. I've also had an increasing number of my own patients (from the clinic) die over the past few years. Some of them died unexpectedly at home or at the hospital. Some went to the hospital and then went home to hospice and died there.

We are getting pretty good at end of life or palliative care in the hospital. We have a wonderful group of palliative care physicians, social workers, nurses and others to help us help our patients through this very difficult time. We have learned to emphasize the importance of comfort and dignity in the end of life. We have even gotten good at encouraging our patients and their families to celebrate the last few days as a part of the mourning process.

But my patient has not been in the hospital. He has chosen to stay away from the hospital during his illness. So when, a few weeks ago, he told me that he wanted to go into hospice, I was not sure what to do. I eventually found the help I needed to help my patient and his family and this week, he entered hospice. I have been traveling quite a bit, so I haven't had time to visit him yet, but I've spoken with him on the phone several times. He sounds great. He tells me the hospice team is amazing. He is clearly comfortable and even sounds better and brighter than he did before hospice. I will go see him next week when I am home. I am really looking forward to it, but I am also scared.

Death is inevitable. We are all terminal. It is a remarkably cold fact. Yet few of us have the opportunity to know when we will die with any degree of certainty. In the rare cases where someone does know, it is often in the terminal stages of disease when they are not conscious or at least not completely alert and aware of their condition. This is comforting to the family, friends and caregivers around. We are not good at confronting our own mortality and being with someone who is actively in the process of dying is uncomfortable.

This is all a long way of saying that this experience between me and my patient is something for which I am completely unprepared. There was no class in medical school, no training in my residency or fellowship, and there was no CME course in "how to treat a dying a patient". Or maybe there was, but if so, it was worthless. So what am I left with? I have no idea, but I suppose the critical elements are the friendship, empathy, and humanity. The truth is, I am able to convince myself that this is not my process. It is my patient's process. I am not the one suffering, and the emotional challenges this experience poses to me are irrelevant. My job right now is to be there as a friend to my patient. My obligation is to do what is right for him and his family.

This is not to say that I am ignoring how this experience is affecting me emotionally. I think there is much to learn and much room for me to grow as a doctor and importantly as a person. I think about each and every emotion and question it and criticize it. I don't like it, but I am surprised by how natural it all feels. That is a beautiful thing. And it is beautiful and natural because my patient is a beautiful person who is dying with grace and dignity. That does not mean that he likes it. Indeed, he often tells me, "this is not easy". I don't expect it is.

I will continue to write about this experience because I think it is important and because it is uncomfortable. I hope that some who read this will learn from the experience the way I have and will. I expect there will be good days and there will be bad days. There will most certainly be sad days. But I hope there will also be happy days, and I hope look forward to helping celebrate the beauty of this man's life. I am humbled by it all.


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