There are stories you read that just wrench your heart, that affect you beyond all belief, that leave a lasting memory on your soul. To me, this will always be the story of Spencer Bell, of which we share with you here.
This past Saturday (December 3rd), was the five year mark of Spencer’s passing and it’s been a heartfelt time for a lot of people. Last night I received an email from Bill Bell (Spencer’s father), as did the rest of the members of the Spencer Bell Memorial site. This is what it read:
You certainly don’t have to read this…But in compiling the email ‘stories’ and ‘memories’ I sought out Spencer’s doctors who treated him over those fateful eleven days at the UofW Medical Center in Madison. (Remember, these are doctors – and the next time someone tells you that doctors don’t care, send them this):
(Dr. Brad Manning)
Of course I remember last November/early December, it was probably the most memorable time period of my residency (and the hardest). Your family’s courage, and Spencer’s courage, in facing something that was just basically unfair, helped all of us get through those days. I remember Bjoern and I sitting back in our conference room, with our eyes essentially glazed over, going over our daily responsibilities 2, 3, 4 times to make sure we didn’t miss anything because we were so emotionally spent. I’ve had many sick patients and emergency situations, but there was nothing quite as hard as delivering what seemed like an endless stream of bad news to you and Spencer. And yet you understood, and helped Spencer understand what was happening to him. I know that the medical system sometimes seems like a big, hulking, unfeeling monster (and sometimes it is, I guess), but within that are people that become attached to their patients, that root for them, that are praying that some surgeon in some other hospital is willing to try something that no one else will.
And then, when there weren’t any more tests, no more drugs, no more surgeons, you both and Spencer were so brave in facing what none of us should have to. They can give us (residents, med students, doctors, nurses, etc) all these tests, about what drug to use, or what radiology study to order. But they can’t teach us how to look a 20 year-old in the face and tell him, despite the fact that he’s willing to try anything, that there’s nothing more we can do. And you both were so helpful, on the days where it seemed like I couldn’t communicate exactly what was happening to him, to take the information in and talk to him about it in the way only parents can.
In the end, I’m glad that he had the time with you, and with his friends, that he did. And I’m glad that he was able to spend the remainder of his time peacefully, with us just trying to control his pain and discomfort as best as we could. Like I told Spence, if he wanted me to use the ventilator, the defibrillator, CPR, I would have. He had certainly earned the right to have us do whatever he wished. But, in what I always felt was a gift to us, his doctor s and nurses and providers, he chose not to make us and you go through that. Again, a 20 year old, who shouldn’t have ever had to make such decisions so early in his life, making choices that I’ve seen 70 and 80 year old patients too scared to make.
My time with Spencer and you two really cemented the way I’ll practice medicine. It was a lesson that sometimes there’s nothing more we can ‘do’, in terms of curing a disease. But it’s at that time that we have to do the most, in terms of helping them understand what’s happening and doing everything we can to give them as much peace and support as possible. I’ll be working in a hospital in the coming year, doing general hospital medicine, but I’ve considered doing a fellowship in palliative care medicine at some point in the future, and my time with your family definitely had a lot to do with that.
I do feel bad about one thing, which is that I haven’t been able to sit down and listen to Spencer’s music yet. For me, still, it’s just too hard. Though I guess that shows how much your family and Spencer have affected me. I’m thinking that maybe before I start work this fall, I’ll sit down with it, by myself, and listen. Just to remember why it is that I do this, how important what we do and say can be to families, and how much we depend on the courage of those patients and families. And this winter, Spencer’s bell will be on my Christmas tree, you can be sure. I hope both of you and your loved ones are well. I’ll be following along on Spencer’s website, and I’m here if there’s anything I can do to help, or if either of you ever just want to talk about that time. I’ll speak more with you soon.
Brad had the conversation with Spencer regarding all of the ramifications of a DNR decision – or conversely, the meaning of a decision to take ‘heroic measures’. In the end, Spencer would choose DNR as Brad mentions above.
Brad also alluded to Dr. Bjoern Buehring and how the both of them (both very young residents) felt helpless in the face of Spencer’s tragic circumstances.
The night Spencer passed away, Cathy and I had both planned to spend the night in the room with him. We’d already been told that he might leave us anytime and we weren‘t sure what that meant – only that we would not be far away from him that night. His friends had already said good night to Spencer (though he was in an unconscious state) and to us and had taken a very tired Brady to the Cactus House to relax and get a night’s sleep.
Rather than writing an email to me, Bjoern addressed his feelings by directing them to Spencer as follows:
I was on call the night you died, Spencer. I was there in those last hours when your family and friends gathered around you to be there for you when you had to go. I was the one who had to confirm your death. Never before and not ever since did I feel so emotionally attached to a patient of mine. This has many, many reasons. I was not much older than you, your family could have been mine, your friends could have been mine. You had a disease nobody expected when you came to the ER with abdominal pain. Cancer itself is horrible in any case – but to find advanced cancer in a young healthy guy who has no real treatment options is devastating.
To see how much love there was around you, how much love you had to give in your last days was amazing. You were a fighter. You were convinced you could beat the odds. But unfortunately, the news we brought to you got worse day after day, no option for surgery, no chemotherapy that would help… In the end you realized that you would not win this battle which was important for you to be able to go in peace.
Trying to be objective, trying to look at it from the physician’s perspective, comparing it with other deadly ill patients who followed after you passed away, it was a “good” death. It was not fair that you had to die, you did not deserve it, and you should still be with us; but the way you left was good. As good as dying can be. I will never forget the pictures and paintings in your room, the singing your band and friends provided on the last day of your life. The constant presence of your family at your bedside, the comfort and love you received from them throughout your hospital stay. All one can wish for, if one is in a hopeless situation like you were in, is to be surrounded by the ones who love you and who you love.
You were a very special person; it seemed like you were surrounded by extraordinary energy and power, even as your body got weaker and weaker. You had outstanding charisma everybody felt as soon they got in contact with you.
You did not want to go this early; you should not have gone this early. I hope you know that you achieved more in the short time you were on this earth than others have in decades.
Spencer, I often think of you when I pass through the oncology ward – you have changed my life as you have changed so many others. That is why you will live on forever, in the memories of all those you touched with your soul.