see the pretty shades of grey

We have been discussing futility in our medical ethics class.

      I come from a strange family that talked about everyone’s wishes as far as life saving measures go as soon as everyone was old enough to participate in the conversation. I know my parents’, paternal grandparents’ wishes and my sisters’ wishes. None of us want to be kept a live by machines if we are brain dead or in some sort of vegetative state and we are all organ donors. I even know where my parents want their ashes spread. And during that conversation none of us seemed to really be really afraid of death. I mean any of us would be devastated by the lost of any family member in our lives but as far as the actual dying goes we are not that freaked out by it. And I realize this is weird and maybe you think my parents are morbid, sick and twisted (yeah they probably are).

      I am not sure if its fighter pilot off the carrier in the dark factor (my Dad and Grandfather…yeah so this should explain a lot about how Type A we all are….) or the fact my Dad is a physician. The fact we all practicing Christians probably have something to do with it, we have been indoctrinated that it certainly doesn’t get worse after you die.  Personally I can remember having this conversation and thinking back to my experiences as a patient and thinking I would NOT want to spend an extra day dying in an ICU or a sterile room somewhere just to have another day.

            So all of this was not foreign to me when we started talking about it in medical school but I was the exception. I also was surprised at how many of my classmates (including two of my really close friends) want to fight for their patients and keep treating at pretty much all costs. “I am going to be the kind of doctor who fights till they are dead!” one of my classmates exclaimed. And I think to myself but define dead… we can keep people biologically alive medically for an incredibly long time. At some point you have to say to the patient, to their family what we are doing is more torture to delay the inevitable than treatment. But I am a little horrified by how callous I sound. Here my classmates are here to fight for their patients’ lives and I sound cynical and apathetic

One of my friends said that futility ethics are age biased, everyone fights to save a child but we don’t go to the same efforts to save an adult. I told her that may be true to some degree but an adult has the capacity to make a decision and children’s physiology allows them to be considerably more resilience. But am I simply reciting the very bias that leads to very discrimination I am supposed to be disproving?

Another classmate says, “There is always hope for a miracle! I will never JUST accept something is hopeless without a fight.”  Hope a word that I toss around quite a lot. Hopeless that is how many of my Eastern European peers describe the children I spend so much time fighting for.  One could argue that considering the resources of Eastern European society, the child’s illness and the damage already done that it’s futile to spend money and time to medically help them. I never consider giving in, I don’t see futility, I see injustice and potential. I want to be a rehab doc…I am going to have muscular dystrophy patients on vents and I am going to be one who helps patients pick up the pieces and help them decide life is worth living. And I am again a little horrified by how callous I sound.

I am sure you are all praying that I never doctor a dying family member of yours. Are my personal ethics inconsistent? Am I biased? Am I callous and cynical? Am I advocating for mercy killing of the terminally ill? 

I freak over quality vs. quantity of life arguments in the beginning of life situations. I become one of those hostile protestors in a power chair with a BIG sign that says I DARE YOU TO ASK ABOUT MY QUALITY OF LIFE. Yet I am quick to be like to heck with quantity of life with someone who is comatose or close to it on life support or who has exhausted medical therapies, I become a white coated figure with a big sign that says LIVE IT UP WHILE YOU CAN or LET ME TORTURE YOU/Your Loved one FOR A COUPLE MORE MONTHS..your choice…but I think its pretty obvious personally but its your choice…

I see the inconsistency. I see my shades of grey. I see the conflict. I see my biases: my disabled bias, my religious bias with its unwavering belief in an afterlife, my patient bias weaving their different hues into a personal ethic that withstand two opposing forces.

I think I come down here, if it’s me, if it’s my family I know what we want, I know what I want. If it’s my patient, my job as a physician is to find out what they want; my job is to encourage them to have that strange morbid conversation with their families so we don’t spend their last days trying to muddle through what we THINK they want. And then my job is to fight for what they want. If we don’t know what they want, well that’s when the crap hits the fan. I am hoping that experience shall teach me how to lay it out for a family without out judgment or bias and without large signs. In general I think I should leave the signs at home, they are bulky and they get in the way.