The great neurologist and writer Oliver Sacks announced last week that he is going to die from terminal melanoma.
However, he does not plan to go gently into that good night.
More words by which to live.
Sunday, February 22, 2015
MY PATIENT, MY COACH
This week I said goodbye to one of my dearest patients whom I will call Coach L. Like me, he is a huge soccer fan. However, Coach L. made his living as a soccer player and coach. During his career, he both played and coached in several World Cups and for many professional clubs and traveled the world.
I met Coach L. over two years ago when his metastatic prostate cancer was progressing despite hormonal treatments and chemotherapy. Until recently, we had no other effective therapies for men like Coach L. However, clinical trials conducted at my hospital and others identified new and more effective therapies that were approved by the FDA shortly before I met Coach L. I treated him with no fewer than five therapies in the past two years, and he also enrolled on three clinical trials. He participated in research because he wanted to fight and because he wanted to help other men with his disease. He gave everything and fought his best, but we had sadly run out of effective options.
When I saw Coach L. last week in clinic, he told me that he had decided to stop treatment. He thanked me for all my efforts but said that he was too weak to continue. He said that he was not afraid to die. He just wanted to die his way. I reflected on his words during that visit.
Coach L. had lost weight, but he was still a strapping, stocky man - a man who had terrorized many strikers in his time. He had never given up on anything in his life, but somehow he knew that now was the time to stop.
I told Coach L. that I was somewhat amazed by his resolve and comfort with his decision. I told him that only a man who had lived a life that he could be proud of and who had nothing left to prove could be that resolute or comfortable with such a decision. He said that he had regrets like anyone but that his life had been full. To him, death was not apart from life. Death was a part of life.
As he, his son, and I consoled each other, I let these words sink in. Death is a part of life.
I told Coach L. and his son that I was sorry that I could not do more, that I had let them down by not controlling his cancer better. However, I also told them that today, more than ever, I felt honored to have the job that I do. I hate the harm that cancer inflicts. However, I also know that cancer introduces me to so many incredible patients like Coach L. - patients who let me into their lives and whom I let into mine.
We spent the remainder of the visit talking about the things we love most - the beautiful game of football and our families. His daughter was planning to visit from his native land, and his son was spending a lot of time with him. We talked about Nicholas' futsal team and how much I enjoyed coaching the boys from Arbor.
I told him that I gave the boys a pep talk before their last game that took place two days before his clinic visit. At that game, I told the boys about how Coach L. was near the end of his battle with cancer and how there are so many more important things than winning or losing football matches. I told the boys that we are judged much more by how we live or play the game than the end result.
These words seemed to inspire the boys. They played well as a team and defeated their opponents 11-6. Most importantly, they kept their cool despite very unsportsmanlike play by the other team. Afterwards, the boys, Cate, and I all signed a card to Coach L. shown below that I shared with him. I especially like Kiko's comment.
Coach L. said that he was proud of the way our boys had played and that he was not surprised that such a team had only lost three games in three seasons. What a compliment from such a giant. What a privilege to be his doctor. What a gift this life is.
At the end of the visit and these two years together, I now know that I have been the pupil and Coach L. my coach. He has taught me to live a life that I might be proud of and to maintain my composure in all circumstances. These are lessons that I hope to remember everyday and that I reminded the Arbor boys of tonight.
Here's to Coach L. - my vote for coach of the year!
I met Coach L. over two years ago when his metastatic prostate cancer was progressing despite hormonal treatments and chemotherapy. Until recently, we had no other effective therapies for men like Coach L. However, clinical trials conducted at my hospital and others identified new and more effective therapies that were approved by the FDA shortly before I met Coach L. I treated him with no fewer than five therapies in the past two years, and he also enrolled on three clinical trials. He participated in research because he wanted to fight and because he wanted to help other men with his disease. He gave everything and fought his best, but we had sadly run out of effective options.
When I saw Coach L. last week in clinic, he told me that he had decided to stop treatment. He thanked me for all my efforts but said that he was too weak to continue. He said that he was not afraid to die. He just wanted to die his way. I reflected on his words during that visit.
Coach L. had lost weight, but he was still a strapping, stocky man - a man who had terrorized many strikers in his time. He had never given up on anything in his life, but somehow he knew that now was the time to stop.
I told Coach L. that I was somewhat amazed by his resolve and comfort with his decision. I told him that only a man who had lived a life that he could be proud of and who had nothing left to prove could be that resolute or comfortable with such a decision. He said that he had regrets like anyone but that his life had been full. To him, death was not apart from life. Death was a part of life.
As he, his son, and I consoled each other, I let these words sink in. Death is a part of life.
I told Coach L. and his son that I was sorry that I could not do more, that I had let them down by not controlling his cancer better. However, I also told them that today, more than ever, I felt honored to have the job that I do. I hate the harm that cancer inflicts. However, I also know that cancer introduces me to so many incredible patients like Coach L. - patients who let me into their lives and whom I let into mine.
We spent the remainder of the visit talking about the things we love most - the beautiful game of football and our families. His daughter was planning to visit from his native land, and his son was spending a lot of time with him. We talked about Nicholas' futsal team and how much I enjoyed coaching the boys from Arbor.
I told him that I gave the boys a pep talk before their last game that took place two days before his clinic visit. At that game, I told the boys about how Coach L. was near the end of his battle with cancer and how there are so many more important things than winning or losing football matches. I told the boys that we are judged much more by how we live or play the game than the end result.
These words seemed to inspire the boys. They played well as a team and defeated their opponents 11-6. Most importantly, they kept their cool despite very unsportsmanlike play by the other team. Afterwards, the boys, Cate, and I all signed a card to Coach L. shown below that I shared with him. I especially like Kiko's comment.
Coach L. said that he was proud of the way our boys had played and that he was not surprised that such a team had only lost three games in three seasons. What a compliment from such a giant. What a privilege to be his doctor. What a gift this life is.
At the end of the visit and these two years together, I now know that I have been the pupil and Coach L. my coach. He has taught me to live a life that I might be proud of and to maintain my composure in all circumstances. These are lessons that I hope to remember everyday and that I reminded the Arbor boys of tonight.
Here's to Coach L. - my vote for coach of the year!
WE WERE ROBBED
Tonight, the kids and I watched the Oscar ceremonies. I was hoping for a big night for "Boyhood." However, things did not go according to plan.
"Birdman" cleaned up in all of the major categories, including Best Director and Best Picture. Many predicted this outcome. However, I am still stunned as I type this. This is because I still believe that "Boyhood" was the best picture of the year by a large margin. In fact, "Boyhood" is my favorite movie of this Millennium so far.
The losses tonight by "Boyhood" made me feel like I do when my kids do not succeed in their activities - gutted. Perhaps, that tells you how much this movie meant to me and so many other people who identified with both the child and the parents who grow up in front of our eyes during the course of the film. What a shame that this work of art was not recognized.
The Oscars reminded tonight that one does not need a trophy to validate one's work. In fact, the craft of making something that touches people's lives - whether that is a film, book, or scientific discovery - is valuable in and of itself. I hope Mr. Linklater remembers that tonight and tomorrow and in the coming days. I know I will even more because of this harsh verdict by the "Academy."
"Birdman" cleaned up in all of the major categories, including Best Director and Best Picture. Many predicted this outcome. However, I am still stunned as I type this. This is because I still believe that "Boyhood" was the best picture of the year by a large margin. In fact, "Boyhood" is my favorite movie of this Millennium so far.
The losses tonight by "Boyhood" made me feel like I do when my kids do not succeed in their activities - gutted. Perhaps, that tells you how much this movie meant to me and so many other people who identified with both the child and the parents who grow up in front of our eyes during the course of the film. What a shame that this work of art was not recognized.
The Oscars reminded tonight that one does not need a trophy to validate one's work. In fact, the craft of making something that touches people's lives - whether that is a film, book, or scientific discovery - is valuable in and of itself. I hope Mr. Linklater remembers that tonight and tomorrow and in the coming days. I know I will even more because of this harsh verdict by the "Academy."
Tuesday, February 10, 2015
BEING MORTAL
Tonight, I watched a Frontline special on PBS called "Being Mortal." The program was based on the book by the same name written by the Indian-American surgeon and writer Atul Gawande. In that book, Dr. Gawande discusses the challenges of facing death and coming to terms with one's own mortality.
The issues of death and dying may seem foreign to you, but I think about these issues everyday. I think about dying when I see my patients or field phone calls/emails about them. However, I also think about my own mortality and how I want the rest of my life to be. Oftentimes, I am left with more questions than answers after encounters with dying patients or when I contemplate my own mortality.
However, Gawande distills the essence of coming to terms with dying in a series of critically important questions. To quote him: "(1) What is one's understanding of one's health or condition? (2) What are one's goals if one's health worsens? (3) What are one's fears? and (4) What are the trade-offs one is willing to make and not willing to make?" Decision-making at the end of life becomes a lot more manageable when thought of in this way.
I do not mean to suggest that these four questions make the process of dying any easier. However, the answers to these questions are immensely helpful in deciding the path that one wishes to take with the limited time that one may have left.
No two patients will answer these four questions the same way. That is what makes us unique and special. However, it is our job as health care providers and patients alike to pose these questions and attempt to answer them. For if we do, we will identify the path that makes the most sense for us.
My answers to questions 2-3 are: 2) To spend as much time with my family and to be kind, patient, and thankful during that time. 3) I do not fear pain or suffering. I fear leaving my kids behind and not being there for them when they need me down the road. I fear missing out on the great things they will accomplish and seeing the people whom they will grow up to be. 4) I would be willing to trade side effects of treatment in the short-run if these treatments alleviated my suffering and helped me have more time with my children. I would not be willing to die in an ICU and be put on life support if I had an irreversible medical event in the setting of a terminal illness.
Answering these questions made me think of the scores of cancer patients whom I have taken care of in the hospital. Oftentimes, these patients have rapid progression of recalcitrant cancers- cancers that have ravaged their bodies and made life at home without medical care nearly impossible. These are the "hopeless" cases in whom further treatments are much more likely to be harmful than helpful. Yet, these patients' dying wish is to keep fighting, to try something else. They are willing to make every trade-off because every breath on this earth matters to them, because every minute with their loved ones matters to them. Death is not part of life for them; rather death is the end of life for them.
I have a greater appreciation- a greater empathy- for their point of view after considering Dr. Gawande's questions tonight. Who am I to judge another person's dying wish?
Answering these questions tonight also made me re-think how I am living my life now as a youngish, healthy person. What do I hope to achieve with the time I have left? How will I make a difference? How do I want to be remembered? How should I behave and treat others? These questions are heavy, but it is imperative that one answer them. This is because the minute we are born, we start to die. However, finding a way to live our lives so that we may die with minimal regrets and maximal peace in our hearts should surely be our goal.
Indeed, that sort of life is only truly possible if we acknowledge that we are mortal.
The issues of death and dying may seem foreign to you, but I think about these issues everyday. I think about dying when I see my patients or field phone calls/emails about them. However, I also think about my own mortality and how I want the rest of my life to be. Oftentimes, I am left with more questions than answers after encounters with dying patients or when I contemplate my own mortality.
However, Gawande distills the essence of coming to terms with dying in a series of critically important questions. To quote him: "(1) What is one's understanding of one's health or condition? (2) What are one's goals if one's health worsens? (3) What are one's fears? and (4) What are the trade-offs one is willing to make and not willing to make?" Decision-making at the end of life becomes a lot more manageable when thought of in this way.
I do not mean to suggest that these four questions make the process of dying any easier. However, the answers to these questions are immensely helpful in deciding the path that one wishes to take with the limited time that one may have left.
No two patients will answer these four questions the same way. That is what makes us unique and special. However, it is our job as health care providers and patients alike to pose these questions and attempt to answer them. For if we do, we will identify the path that makes the most sense for us.
My answers to questions 2-3 are: 2) To spend as much time with my family and to be kind, patient, and thankful during that time. 3) I do not fear pain or suffering. I fear leaving my kids behind and not being there for them when they need me down the road. I fear missing out on the great things they will accomplish and seeing the people whom they will grow up to be. 4) I would be willing to trade side effects of treatment in the short-run if these treatments alleviated my suffering and helped me have more time with my children. I would not be willing to die in an ICU and be put on life support if I had an irreversible medical event in the setting of a terminal illness.
Answering these questions made me think of the scores of cancer patients whom I have taken care of in the hospital. Oftentimes, these patients have rapid progression of recalcitrant cancers- cancers that have ravaged their bodies and made life at home without medical care nearly impossible. These are the "hopeless" cases in whom further treatments are much more likely to be harmful than helpful. Yet, these patients' dying wish is to keep fighting, to try something else. They are willing to make every trade-off because every breath on this earth matters to them, because every minute with their loved ones matters to them. Death is not part of life for them; rather death is the end of life for them.
I have a greater appreciation- a greater empathy- for their point of view after considering Dr. Gawande's questions tonight. Who am I to judge another person's dying wish?
Answering these questions tonight also made me re-think how I am living my life now as a youngish, healthy person. What do I hope to achieve with the time I have left? How will I make a difference? How do I want to be remembered? How should I behave and treat others? These questions are heavy, but it is imperative that one answer them. This is because the minute we are born, we start to die. However, finding a way to live our lives so that we may die with minimal regrets and maximal peace in our hearts should surely be our goal.
Indeed, that sort of life is only truly possible if we acknowledge that we are mortal.
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