The confusing ethics of resuscitation science

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.”

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Making sense of our finite lives

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).

Adagio, with feeling

Aesop's fable, Tortoise and HareAlthough 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.

An ethical will by any other name

Last year Randy Paush and his 70-minute talk, now known as “The Last Lecture” become extremely popular. Now it has become an inspirational book containing “ideas for achieving one’s childhood dreams” which has spawned a “…contest seeking examples of great parental advice either dispensed or received.” I have mixed feelings about this.

I’ve read that Paush was astonished at his sudden notoriety and only cared about “…the first three copies of the book.” One of his friends said, “Randy never, ever had any expectation that his lecture would turn into the phenomenon that it has become. The main reason it was taped at all was so that his children, especially his younger two, would know something about him.” At around the 55 minute mark (where it deepens into something more than a professional resume) he shares his success depended on the blessings he was born with and talks about the wisdom imparted by those closest to him. A contest doesn’t quite mirror the intent.

Whether Paush (or hundreds of comments) inspires you or makes you cringe shouldn’t matter. Leaving something personal after death is very common. We all have something intimate to pass along. What should matter is that we be encouraged to do so regardless of children. While wisdom isn’t the strict purview of the dying, or even the old, those groups do tend to have a sharper focus on the essential. And despite Paush’s claim that the “headfake” of the lecture was that it wasn’t intended for the audience, his reflections enlightened everyone who saw it. I wish the Times had used the opportunity to promote ethical wills to their readership (which I’ve mentioned before). I realize all the hype over social media encourages us to feel like everyone must want to read our pearls of wisdom (honestly, they don’t). But unlike blog posts your “final love letter” isn’t addressed to the world. It is written to a few very specific people who mean the most.

There are already 324 comments (and counting) of people sharing their advice with strangers on a web page that will soon enough go dark without benefit to anyone. Whereas if they’d taken the same trouble to write these thoughts in a letter, included a photo or two, and put it in a safe place (–even reviewing it once in a while), it might just survive long enough to make a deeper impression. Much more valuable than a fleeting contest with a questionable prize. As much as I hate to admit it, I understand why people would rather leave a public comment than write a personal letter.

Unanswerable questions

sontagbook.jpgThis one hit home for me, an excerpt from “Swimming in a Sea of Death, A Son’s Memoir” from an interview by Terry Gross on NPR:

“Thinking back, I wish I’d hugged her close or held her hand. But neither of us had ever been physically demonstrative with the other, and while much has been said and written about how people transcend their pettier sides in crises, in my experience, at least, what actually happens is that more often we reveal what lies beneath the waterline of what we essentially are.”

In his book David Rieff writes about his mother, Susan Sontag, and her struggle with cancer. She died around the same time as my own mother, with mine being only a few years older. David voices some of the same “unanswerable questions of a survivor” that in hindsight plagued my ability to talk openly with my own mother about her failing health and the forced cheerfulness, or in my case ignorance, of the gravity of her diagnosis. And while my mother was not a famous writer, I can say without hesitation she loved life equally as much in her own way, whereas my feelings tend to drift towards the “…eighteenth-century French writer who wrote a friend asking “why, hating life as I do, do I fear death so much?” That was Larkin’s perspective, too. It was even Canetti’s when he wrote, “One should not confuse the craving for life with endorsement of it.” Regardless of a personal perspective on death, Rieff puts the difficulty of consoling another facing it into sharp focus, and everyone who has confronted similar situations will be left nodding their heads. He talks of the things he felt he should have seen, the do-overs if given the chance. He examines them without the overly sentimental perspective one would expect from a child who has lost a parent. They are simply those unanswerable questions we are each left with in the end, “Did I do the right thing? Could I have done more? Or proposed an alternative? Or been more supportive? Or forced the issue of death to the fore? Or concealed it better?” and there is no predicting them. Listening to him talk about what he wanted from her and what he felt she wanted in her own death is an interesting reflection on death and his mother’s struggle to deny it purchase.

The odds are high

pink_dice.gifA neighbor of mine died last Friday from a heart attack. When I asked his wife if they’d discussed his burial wishes she said no, they felt if they never discussed it, it wouldn’t happen. This is despite the fact he had a medical history of heart disease. Of course she knew death happens whether you discuss it or not, but I was shocked they had never discussed it in their 48 years of marriage. Luckily her children will help her muddle through the details of the coming months. Not everyone chooses to prepare for death regardless of the odds. Some people just don’t feel it’s necessary, after all, they won’t be around and people do have a way of adapting. But I thought bringing up the topic of odds might be useful for perspective. Here is an excerpt from a 2005 article titled conveniently, The Odds of Dying. I’m sure the insurance industry uses figures similar to these as well. It’s also interesting to note that although we aren’t all high rolling gamblers, we are often more afraid of dying from remote causes rather than the more mundane and obvious. Just another method of denial perhaps.

(UPDATE: Just spotted this PSA from the American Lung Association titled “Odds” as a warning against starting smoking. They contrast the chance of getting lung cancer with getting hit by a car–a visually dramatic comparison of 1 in 7 compared to 1 in 100).

The more specific figures are based on 2001, the most recent year for which complete data are available. Other odds, indicated with an asterisk (*) are based on long-term data.

All figures below are for U.S. residents. (personal note, I sure wish WordPress made making tables easier)

Cause of Death Lifetime Odd


Heart Disease………………………..1-in-5
Cancer ……………………………….1-in-7
Stroke…………………………………1-in-23
Accidental Injury…………………….1-in-36
Motor Vehicle Accident*……………1-in-100
Intentional Self-harm (suicide)…….1-in-121
Falling Down………………………….1-in-246
Assault by Firearm…………………..1-in-325
Fire or Smoke………………………..1-in-1,116
Natural Forces (heat, cold, storms, quakes, etc.)…1-in-3,357
Electrocution*……………………….1-in-5,000
Drowning……………………………..1-in-8,942
Air Travel Accident*………………..1-in-20,000
Flood* (incl. in Natural Forces above)……………..1-in-30,000
Legal Execution……………………1-in-58,618
Tornado* (incl. in Natural Forces above)………….1-in-60,000
Lightning Strike (incl. in Natural Forces above)…..1-in-83,930
Snake, Bee or other Venomous Bite or Sting*…….1-in-100,000
Earthquake (incl. in Natural Forces above)………..1-in-131,890
Dog Attack…………………………1-in-147,717
Asteroid Impact*………………….1-in-200,000**
Tsunami*…………………………..1-in-500,000
Fireworks Discharge………………1-in-615,488

**perhaps 1-in-500,000

SOURCES: National Center for Health Statistics, CDC; American Cancer Society; National Safety Council; International Federation of Red Cross and Red Crescent Societies; World Health Organization; USGS; Clark Chapman, SwRI; David Morrison, NASA; Michael Paine, Planetary Society Australian Volunteers

Memorial services correspondent

Solar video panel for gravestonesNow that sounds like quite a job title. Please someone, offer me this job? Not many people would find it as fascinating as I do–but if (the historical predecessor to Jon Stewart and the Daily Show) Ned Sherrin enjoyed it, you might say such work has more entertainment and enlightenment value than appears at first blush. In fact one of the many tributes to him said, “…Sherrin has in recent years also been memorial services correspondent of the Oldie magazine, because it was said he went to them all anyway. And in his autobiography published in 2005, Ned Sherrin, the Autobiography, he makes it clear he will continue to attend the memorial services of others until it is his turn.” He would attend funerals not just to write an obit, but to comment on them as a theater critic might review a play.

At the same time he gathered an anthology titled Remembrance: An Anthology of Readings, Prayers and Music Chosen for Memorial Services with proceeds to benefit an English hospice organization. Again ahead of his time, he believed everyone wanted to personalize (or orchestrate) their own memorial in some way rather than rely on what others might say. Strangely nowhere is described how his own funeral was performed. As an actor and writer I’d be surprised if he didn’t at least have a parting shot for his friends and fans. After all, isn’t a memorial a type of theatrical event? It’s a pity that not only is the above-referenced title out of print, but equally disappointing is I can find no record online of even one of his funeral review columns from the Oldie. Seems like although his life’s work is fondly remembered, the work itself has dropped into a black hole. (And yes, that is a pun.)

All that’s left to do now is let that job title segue nicely into “RIPtv” as yet another fascinating idea whose time is still yet to come? I’m almost shocked that some producer hasn’t at least tried to cash in on this yet. [Thanks to Alana at obituaryforum.com]