DNR

there was a very well written article in the new york times this week on the subject of the DNR (do not resuscitate) order. it is a pretty thorough primer on the subject. curiously, this article appeared in the science section which is a fascinating social commentary. i see that they have since moved it to the perfectly good health section right next to it. perhaps a perfect starting point for a discussion on how and where the understanding of death, and life for that matter, fits into our cultural fabric.

not surprisingly, among layfolk, there is a great deal of suspicion, if not outright fear, surrounding the whole topic of obtaining this order and its ramifications. i think a lot of people can imagine wanting to be a DNR in the setting of a terminal illness, but then fear, once they've made that decision, choking on a raisin and healthcare workers just standing around staring at them, whispering to each other well, she said no heroic measures - which is, of course, not how it works. conversely, i think patients worry about not making this decision early enough and ultimately burdening their family members with making a decision. i can't state the issues better or more clearly than the author. i hope a lot of people read it and begin discussions with their families and doctors.

in oncology though, as i have stated in this blog before, one would expect some level of proficiency in dealing with this subject. it's a very complex, highly emotional topic and in a hospital setting this and other decisions are often made in crisis situations or other less than ideal circumstances. but for a center that deals with a great number of terminally ill, i have witnessed far too much strife on the part of patients and families and staff as last minute decisions are being made, that needn't have been last minute. it reflects a breakdown somewhere in the system - a failure to make the possibility and/or liklihood of death a part of the oncology conversation. failure to have open lines of communication on the subject. failure of the providers to say 'it's time to have the talk we hoped we'd never need to have'.

this is not a complaint i am filing as much as it is an observation i am relaying. and if i perceive this as a deficiency in my center, it's not a reflection of the individuals here. rather, i think it speaks to the enormity and complexity of this problem. that basically, if we can't get it right here on a consistnet basis, if we can't be a model for how it should be done, then it's no wonder it's difficult everywhere else.

i attended a conference at my medical center on this topic. this involved physicians, nurses, and social workers - all in oncology - looking at the questions surrounding end of life care. i remember the opening remarks by the oncologist leading the discussion - 'we need as a group to discuss this important issue of when to broach the subject of death with our patients'. am i really the only one thinking broach it baby ! it's probably on their mind from the moment they walk in the door? what are you waiting for?

more than one physician at this conference said 'it's too uncomfortable to bring up when you first meet someone'. really? you're a doctor - you insert your fingers in the rectums of people you just met ten minutes earlier. and why do you? - because it's necessary, it's part of a thorough exam, and your patients are counting on you to do what's in their best interest, comfort aside. you didn't wait to forge a meaningful relationship before you did that. medicine is fraught with discomforts - but overall we accept them because it helps keep us well. this, while not exactly a finger in an orifice, is no exception.

i reject this notion that it is insensitive to bring it up early. most of my patients have told me that the greatest horror of getting diagnosed is the feeling of getting a death sentence handed to them - that whatever the diagnosis, they are going to die. they are already thinking about it and i think it's important to open that door early - let them know it's normal to think about it- let them know it's not taboo to talk about it even if they have a good prognosis - let them know that they're going to be contemplating their own death at some point in this process and that this is a safe place in which to discuss that. it would be inappropriate to perseverate on the subject but to not mention it feels equally obtuse. i don't think it deprives them of hope. i don't think it's insensitive. in fact, i think it's compassionate.

i have found that starting a conversation with a simple, 'geez, it must be so scary getting a diagnosis like that' is often enough to start a discussion on the subject - a discussion that can grow over time as you build a relationship. so much of early oncology care is about cheerleading and action and getting treatment started and providing hope. i am all for all of that. talking about fear of dying does not need to be independent of that. when handled gently, as you would any intimate topic, it can be liberating, even empowering to patients to have their doctors and nurses acknowledge these very normal fears early on. and then what you have is a working dialogue - something to build on if the patient's prognosis worsens and death becomes imminent. then there is trust already established and it's so much easier on everyone to talk about the specifics of death when the general subject hasn't been ignored up that point.

of course it's not always going to go well. some will be rubbed the wrong way by your efforts. some will be unable to discuss their feelings with you at the beginning, or ever. that's ok too. i do feel it's incumbent upon us, the providers however, to try.

cancer makes us all think about death.
tallking openly about that fact is not easy or fun.
then again, lots of important things aren't.