Even though DNR (Do Not Resuscitate) bracelets have been available in the U.S. for years, I have a feeling there will always be controversy surrounding whether a patient can/should refuse critical care. Especially in cases of unforeseen emergency. Imaginative methods of preventing heroic lifesaving measures will continue to challenge the law until we can come up with a foolproof system everyone is comfortable with. But since attitudes towards what would constitute compassionate treatment differ wildly when it comes to extreme paralysis, coma, or chronic pain, I hold little hope we’ll reach an agreement in my lifetime. Ask any Ambulance Driver and they will tell you even the study of resuscitation is an inexact science that requires a patient’s ignorance:
“We will never know the best way to treat people unless we do this research. And the only way we can do this research, since the person is unconscious, is without consent,” said Myron L. Weisfeldt of the Johns Hopkins University School of Medicine, who is overseeing the project. “Even if there are family members present, they know their loved one is dying. The ambulance is there. The sirens are going off. You can’t possibly imagine gaining a meaningful informed consent from someone under those circumstances.”
Which means depending on where you live, it really may not matter if you carry a card, have a tattoo or sign a Medical Directive since the rule for an EMT based on protocol is resuscitate first, ask questions later. This is also why DNR’s are usually reserved for patients with terminal illnesses who wish to die without invasive medical procedures rather than for people experiencing heart trauma or other medical emergencies. Ultimately (and frustratingly for some of us) it seems the only fail-proof (?) method is trusting your eventual caregivers to know your desires and be strong enough emotionally to fight for your rights, if it ever comes to that. (via BoingBoing)
UPDATE: In a related story, the Washington Post reports on a New York Ambulance service for recovering your organs if EMTs can’t save you. While organ donation is desperately needed, of course it makes people suspicious: “I think it’s disgusting,” said Michael A. Grodin, director of bioethics at Boston University. “People are going to worry when the ambulance comes out to their house whether they are there to care for them or to take their organs.”
Depending on your view of the legacy he left behind, Jamie Livingston is an inspiration or a man obsessed with capturing the ordinary. Either way he is now posthumously famous thanks to some great detective work and reporting by Chris Higgins and the dedication of his friends, Betsy and Hugh who are at this very moment struggling to keep the website live despite the crush of popularity currently crippling their server. “When Jamie Livingston, photographer, filmmaker, circus performer, accordion player, Mets fan, and above all, loyal friend, died on October 25th (his birthday) in 1997 at the age of 41, he left behind hundreds of bereft friends and a collection of 6,000 photographs neatly organized in small suitcases and wooden fruit crates…” No words, unless you count the words within the photos themselves. Just Polaroids. Which actually makes sense if you’re a filmmaker and one visual is worth, well, thousands of words. The whole mystery ends up being a bit unintentional but still, you can sense the exhilaration in Betsy’s writing,
i knew it would happen in some random way. i love it. the tears started coming when i pulled up OTBKB and read the first few words….
Another friend wrote to her:
i can just see the shit eatin’ grin on jamie — the new hero of the blogosphere’s — face! precious and priceless.
Isn’t that something? And based on the number of comments on OTBKB, it’s quite emotional for many people to glimpse this man’s life in such a way. The whole thread is really worth reading because some of the comments are as insightful as the photographs.
I have a friend who has opted to do something similar with his daughter. I won’t link to it here since she is a minor and still quite alive. (Of course, if he wishes he can leave the URL in the comments). But he has taken a photo of her at least once every month since she was born and already has quite a collection since she is nine now. I can’t help but wonder if she will chose to continue this inherited legacy once she is on her own, or if she will chose another. It certainly will be a great gift he will give her when she is old enough to understand the dedication it takes.
Besides getting up every morning and drinking coffee, there is no compulsion I religiously repeat the same way each day. There are others who journal or create one sketch per day but I have a kind of attention deficit disorder when it comes to finding my own work compelling enough to collect rather than simply give away. Maybe I haven’t found a gimmick and it is waiting for me in some yet undiscovered form. A collection of some kind that reflects who I am–once I find out who that really is.
From a BBC news article, “I think that there is a huge role for philosophical reflection as a way of changing our attitude towards events over which we have no control…We have to learn to make sense of a finite life.” Philosopher Havi Carel uses the tools she understands best to place a personal perspective on her own terminal illness. She is working on a book due out in the fall titled Illness (The Art of Living). I’m sure it will contain reflections similar to the one’s she mentions in the longer article of last March from The Independent,
“Illness breaks down the neutrality and transparency of our bodily existence. But it has also given me perspicuity. I observe my life and the lives of others and see them for what they are: brief, full of emotion and agony, activity and joy. I see people arguing over nothing, worrying about wrinkles and careers. Illness makes you immune to that. From the loneliness into which my illness forced me, I became able to see the world anew.”
Her’s is a different way to view illness: as an emotional world that can incorporate well-being and the possibility that you can be ill and still happy. It is an unexpected hypothesis and one that depends on a different and more creative approach and attitude than most of us are used to, or maybe more than we are even comfortable with. After all, no one says they’re sick or terminally ill with a smile. Or do they? Which is why this a useful bit of mind-bending.
To be sure Dr. Carel has creativity to spare. On doing a bit of further research I found an article she authored (from SCAN, The Journal of Media Art and Culture) that appears to draw from similar themes only in a very off-beat and fascinating way, with a really terrific bibliography at the end. I won’t reveal too much about it since you only have to read the first paragraph of the link to see where she takes the essay, but I will say it involves illness as a metaphor to one of the most horrific monster movies of all time. The one that completely freaked me out when I was a kid and to this day I can’t bring myself to ever watch again. To draw such parallels you certainly do need to be an out-of-the-box thinker. (Thanks to Chris at Crooked Timber for the heads-up).
Although it has a bland headline, this article from the NYTimes is so much more important and interesting than that other story grabbing attention about the guy who bought a coffin branded as a can of PBR beer (you can search for it but I won’t bother).
I find this idea of “slow medicine” compelling because I’m familiar with similarly named movements, like slow food, and slow leadership. Such labels are more honestly about simply increasing personal awareness of your environment and those conscious decisions we each make about how to best operate within that environment. They also all seem to echo the meditative principles of the Eightfold Path where the wisdom and ethics of alleviating suffering are really about doing the right thing.
I think the conflict we feel when it comes to end of life care relates to the values we project onto others–the choices we would make for ourselves in similar situations, which might not be the best choice for another. For example I remember my brother, in emotional distress, telling me we had to do everything possible to “save” our father, “to give him a fighting chance.” Dad was at that moment in and out of consciousness, breathing artificially, in an ICU due to a virulent strain of pneumonia. Since he couldn’t be consulted (and I only suspected what he’d want based on my own prejudice) what was I to do? Play the angel of death? I asked my brother to what end would we be keeping him alive? He had suffered several strokes and was blind in one eye. He had been nearly deaf for years and to add insult to injury he suffered from dementia associated with Alzheimer’s. How heroic should we tell the doctors and nurses to be? In hindsight I understand and still remember my brother’s panic. Doing anything at all seemed better than the waiting and helplessness of a bedside vigil. He was angry with me and lashed out by saying he wouldn’t want to be under my care because I’d probably pull the plug the first chance I had. It was a difficult situation and hard to hear. Just like this list from the CDC on who gets lifesaving care in a pandemic is a difficult one to read.
As the doctor in the article states, our love of life has predisposed us to aggressive care. I don’t believe the real question is even about cost or risk. It requires we ask when our honor, dignity and humanity requires that while we may not welcome it, we allow death to take its course because it is the right path. And the right answer will often be hard to accept, making the right choice life-changing.