Tears for a life too short

I can't stop crying for a boy I never met, but who's story I have been following for the last year and a bit.  He was diagnosed with AML at 6, his battle chronicled in poetic detail,  and died over shabbos. 

He was a superhero.  His parents, Rabbi Phylis and Rabbi Michael, are beyond superheros.  Time and time again they have gone above and beyond to bring good into this world.  Throughout this whole process they seem to always keep others in mind, trying to give back to those they encountered every step of the way.   It is this selflessness that continues to inspire me.  Even in circumstances horribly beyond imaginable, goodness and light can be sought.  There is always work to be done. "36 rabbis shave for the brave" St Baldrick's fundraiser is underway, now in Sam's memory, with a lofty goal of raising $180,000.

Sometime around the beginning of medical school I remember reading a study that doctors tend to be much more uncomfortable with death than the rest of society.  We may be comfortable with our own mortality, favoring much less invasive end of life care, but we can not except it for others in our lives.  I don't remember where I initially read it, but in times like this, I wonder about it.   Are we predisposed to medicine because we want the tools to stop death, or does medical training teach us that death is failure?

Regardless, 8 year olds are not supposed to die.  Parents are not supposed to bury their children.  For all that love Sam, z''l, and for all the others' who have had to bury children prematurely, my heart breaks for you.  I can not even begin to imagine what you have been through.  Know that I will try to carry your tragedy into my practice as a doctor - hopefully making me more compassionate, empathetic, and aware of the limitations of my art. 

Right brain approach to healing

(image is a Mercedes-Benz add, taken from http://www.andrewkeir.com/right-brain-vs-left-brain/)

Science is often though of as a left brain thing.  Art is the right brain.  But what happens when you combined them?  What happens when a man with brain cancer begins to think outside the box?  What happens when the man has the ingenuity and skill set to crack code, redefine healing and cure, and appeal to a larger, global, audience?

You have Salvatore Iaconesi.  You have an OPEN SOURCE CURE.  In his poetically beautiful words, here is his plea:

"There are cures for the body, for spirit, for communication.

Grab the information about my disease, if you want, and give me a CURE: create a video, an artwork, a map, a text, a poem, a game, or try to find a solution for my health problem.

Artists, designers, hackers, scientists, doctors, photographers, videomakers, musicians, writers. Anyone can give me a CURE."

This is an absolutely beautiful reinvention of medicine.   This is the art I am proud to be learning, practicing, and bearing witness in the lives of all my patients (past, present, and future).   

“Promise me if you find me like this that you’ll kill me.”

Read this article.  Read it NOW.  Then start having these conversations with your loved ones.  It is about time our society starts really, honestly, talking about end-of-life care.

And on a related note: my grandmother was moved back home with hospice care yesterday.  It still stinks to be treating others' as they confront death while my own family is facing it miles away without me there, but now I know they have a little more support. 

Here is a little secret: we're all going to die

I don't think that by stating this inevitable fact I'm bringing on the grim reaper or evil eye, but just in case: poo poo poo. I don't mean to be morbid. I also don't mean that we're all going to die NOW. What I mean is quiet simple: sooner or later, each in our own time, our lives will end in death. After all, did we not learn anything from Disney's "The Lion King" about the circle of life?

My week in London was surrounded by Jews and learning. I was at a 6 day conference with over 2200 people and >400 sessions to choose from. It was kind of like summer camp for grown-ups, expect on steroids. We woke up early to pray and learn, kept our noses in text all day, and then chatted, sung, and danced late into the night.

Many of the sessions I attended related to medical ethics. I went to one on Talmudic tips for breast feeding (one should breast feed up until age 2, tsniout is not an issue), another on sexuality outside of marriage (the realization that humans are inherently sexual), another on what the torah has to say on resource allocation in socialist health care (we are obligated to save lives), another on whose life are you obligated to save (2 people, 1 water bottle...), etc...

However, the sessions on halakhic organ donation, on brain death vs. heart death, and on assisted dying are the ones I feel compelled to talk about here. The common theme in these sessions, and something that I see often in medical school, is that our culture is afraid of death. We're afraid to think about it and talk about; as if doing so will make it happen to us. Doctors seem to be the worst at this: often scared to admit that we can't save all our patients from their inevitable death. However, this fear isn't helping anyone. It means that rumors and superstition are allowed to spread rampant, loved ones are left to make choices without guidance, and that end of life care is much more invasive and costly than is necessary.

I believe this all can be changed with a few simple steps. I urge you to consider doing 1 or all of the following:
1) Think about becoming an organ donor. Get the truth on Judaism and organ donation. We don't want to think about dying young or about someone taking out parts of us; but remember that saving a life is the BIGGEST mitzvah one could do. Also, that livers have been donated from people in their 90s! Signing up to be a donor doesn't mean your destined to become one; if this were the case, there wouldn't be an organ shortage.
2) Talk to your family and friends. Let them know how you feel about end of life care and about what you decisions you hope they would make for you. Have these conversations often and under the auspice that our choices will evolve as our lives evolve. By having these conversations, you'll save your loved lots of grief and confusion; allowing them to know their living out your will.
3) Create a living will. Assign a medical power of aterny/health proxy. Use the legal framework in your favor to know that your wishes will be upheld in the event that you are unable to make the decisions yourself.

"Letting Go"

Here is another amazing article by Atul Gawande. He speaks of issues that make us Americans very uncomfortable: end of life care. It is not surprising to anyone that a disproportionate amount of our health care spending goes towards those facing death; is it worth it? When do we say that enough is enough? While drawing concrete lines that such and such a procedure under x circumstance is wasteful doesn't seem so hard; it all changes when talking about a specific person. How do we create a fair, finically responsible and sustainable medical system? How do we do it while valuing each individual life as priceless? Thoughts?

My inner-anthropologist thinks that we need to come to terms with death being a natural, and sometimes even desirable, end to life. As doctor's we need to stop seeing death as failure on our parts, and need to start seeing palliative care as an alternative option. We also need to really listen to our patients, identifying what their true desires about end of life care and encourage them to share this information with their loved ones.