death and dying.

Yesterday we had a lecture and 2 hours of small group discussion about death and dying from the medical provider's perspective. We talked about the ideal situations where our patients die peacefully with appropriate advanced directives after leading a long, wonderful life. But then we also talked quite a bit about the untimely deaths, especially of children, which can never be predicted or planned for.

Truthfully, I think that the reason death is so scary is that "the specter of death destroys any illusion that we are in full control of our lives..." (Bass, 161). I don't know about y'all, but I like things much better in my life when I feel like I have some semblance of control. I would venture to guess that this is why doctors struggle with dying patients so frequently...because we are sworn to protect life and death is an abrupt reality check that we are not in complete control of that very same life. 

Because this is such a sensitive issue, we spent quite a bit of time actually talking about our feelings and experiences (not something we really do a whole lot of in medical school...feelings are just so touchy-feel-y!). Some of the questions that we talked about at some length included:

• How do you cope with your patients, with whom you've formed very intimate relationships (in the sense that many people will only tell their docs their innermost secrets), dying? 
• How do you help the family cope with the death of their loved one? 
• What is your role in the dying process for someone with a chronic and progressive disease process?
• What, if anything, do you do when a patient's quality of life drops below some vague, non-existent line demarcating "good" and "bad" lives? Is that even your jugement call to make as a physician?

All of these questions are obviously hard and, truthfully, there's not always a "right" or "wrong" answer for them. Sure, there are legal and ethical boundaries created for us, but they don't dictate whether or not you can cry in front of a patient or whether or not it's okay for you to send a card to the family or go to the funeral.

I guess I'm not all that nervous about these situations arising in my future. Obviously I don't look forward to them, but I'm not dreading them either. Let me explain... Death is inevitable; we all know that. I admit that it is often tragic too. My experiences working in a church have taught me that it can also be a beautiful process (clarification: beautiful, but not pretty...dying is very frequently an ugly and gross thing from a biological standpoint). I find it to be quite an honor to be included in some of the most intimate and loving moments experienced between families (I would like to add that many pastors agree with this sentiment on some level too). They are rich with family history because often family members are reminiscing about the soon-to-be-deceased/deceased. For those with awful chronic, painful diseases, dying ultimately becomes a reprieve from the pain of the physical world. Death is the end of suffering.

Do my personal religious beliefs skew my understandings of death? Absolutely. As a Christian I believe that God is stronger than death. That is the only way that resurrection of the body and soul are possible. I celebrate the Resurrection on Easter each year, but I realize that "even the resurrection does not erase from Christ's hands and feet the wounds of the crucifixion" (Bass, 168). Death is painful and ugly. too.

As I write about my personal beliefs, I must also acknowledge that we live in a multi-faith society and that many of my patients, as well as many others, do not share my personal beliefs on life and death. Not only do I respect that, I am grateful. I don't expect my opinions to be taken as Truth, but this is my blog after all, so I suppose my opinions are inevitable. 

Throughout the discussion yesterday, I was reminded of one of my experiences in the pediatric neurology clinic at LeBonheur Children's Hospital in Memphis. I originally blogged about my experience in another blog, but below are excerpts that apply to this post specifically.

I was shadowing a doctor in the clinic when the family of an 11-year-old boy came in. He had a progressive epilepsy disorder which made him unable to do anything except drool. And smile. Both of which he did constantly. He wasn't always wheelchair bound and he wasn't always blind or mute. In actuality, he used to be a normal, rambunctious boy, but his disorder took away any hopes of a "normal" childhood, or life for that matter. His parents were in the office to plan for their son's imminent death.

The doc I was shadowing didn't give me any warning about what we were walking into, so I was quite overcome with emotion when I was suddenly part of the conversation about advanced directives for an 11-year-old. We just don't expect children to die. I know this conversation wasn't a cake walk for his parents either, after all, it was their only son, for whom they had initially had big dreams and aspirations. But, unfortunately, that wasn't how their story panned out.

They were actually there at the request of their son.

You see, shortly before he lost his ability to talk, he had a seizure early in the morning. This was not an uncommon occurrence. This particular night, his mom put on a pot of coffee and sat down to chat with him before he made any futile attempts at falling asleep. It was then that he told his mother that he was moving soon. As any recently aroused mother would do, she inquired more deeply as to just what he was talking about. He pointed up and said "I'm moving in with Him." Her natural response, and essentially any adult's response, was simply "Huh?" He explained that he had talked to God and that soon he was going to move. He asked his mom to let him go when the time came and not to hold onto him forever. He didn't want to be trapped here, on earth, in a body he could no longer use. 

How incredible is it that a 10-year-old child embraced death more fully than those of us who are well beyond his years? I also think it's amazing and wonderful that his family is so "in-tune" with their sons needs and wants that they are able to overcome their own fears and hang-ups about death to honor his wishes. 

That little boy is never far from my heart; I actually think about him more frequently than I could have ever imagined. Although I wrote that initial blog post almost a year and a half ago, I still think that it's as true now as the day I wrote it. I'm glad that I wrote about my experience while the emotion of the situation was still raw and pure, because it allowed me to be real and present in the moment.

Raw. Pure. Real. Present. These are things that I re-learned that day from this incredible boy that I had forgotten in my "old age."

Children like him inspire me to continue on my path to becoming a doctor because they teach me to become more fully alive than I was before meeting them. This is not because they are knocking on death's door and cause me to have nostalgic feelings about my own life and loves, but because they re-ignite a part of me that has been buried by years of growing up. I truly believe that children can teach us all what it means to fundamentally be a human, without all of the pollution and convoluted-ness of adult life that has barnacled itself to us as we have matured. He stands fearlessly on the cliff, from which we all must make our eventual plunge, prompting each of us to live again. 

But most importantly he reminds me, reminds us all, to continue to smile. 

Yesterday he was not only my reminder smile, but also a reminder not to fear death itself.


Quotations are taken from Practicing our Faith: A Way of Life for a Searching People (2nd ed) by Dorothy Bass.