As the Advanced Care Planning Consultation legislation goes down in flames for the second time, I thought I’d revisit this post from August where I wrote about one of the biggest reasons it went down the first time. It seemed like it was still pertinent so I’m posting it again.
(This post was originally published on August 20, 2010.)
Like many people, the Christmas tree scene in the original 1972 Poseidon Adventure movie made a deep impression on me. I was only fourteen when the movie was first released so I was impressionable. Given. But even so the scene is a classic.
It’s Christmas (New Years?) Eve on a luxury ocean liner out in the middle of the ocean and the crew and passengers are celebrating in the ballroom under the branches of a towering and heavily decorated Christmas tree. As per disaster movie formulae, a tsunami formed by an earthquake off the coast of Crete comes rolling across the ocean and hits the ship broadside, capsizing it and tossing the above mentioned assemblage all over the slowly inverting ballroom. Once the Poseidon settles in it’s new, upside down position, the Christmas tree is lying on it’s side on the ceiling-turned-floor.
Enter: Gene Hackman, a renegade missionary. He swiftly marshals a group of men to raise the tree again for use as a ladder to access a service door at the bottom-now-top of the room.
We’ve seen a lot of random chaos and horror up to this point but Fear as a saboteur has been suspiciously quiet. That changes once the Christmas tree option is presented. Fear immediately recognizes a golden opportunity and steps in to set the first, big snare of the movie:
The survivors each have to make a choice.
Reverend Gene, on the one hand, tells everyone to climb the Christmas tree and head for the hull of the ship, because that’s the only logical place where rescuers could ever access survivors. Reverend Gene represents original thinking and a challenge to the status quo.
But the ship’s purser disagrees and tells them no, no, no, they must all stay put in the ballroom and wait for someone to find and rescue them there because the ballroom is where rescuers will search. The purser (read official man in a uniform) represents standard thinking and the status quo, something fatally attractive to anyone with a strong herd mentality.
It was painfully clear to all of us in the theater that the Rev was right and everyone needed to climb. Fast. We knew that those who couldn’t rise above convention and think outside the box were gonna die, die, die, horribly and soon. We knew this because the whole scene was built around a basic rule of human behavior; terror tends to drive thinking out of the cerebral cortex (rational, logical, problem solving) and into the amygdala (instincts, habit, and fear). Anytime we’re confronted with a new and terrifying situation, if we can’t master our emotions and analyze circumstances objectively then we revert to old mental ruts and knee jerk reactions.
We follow the herd because by god there’s safety in numbers. Right?
In this case, not so much. Fear springs the snare, paralyzing just about everyone there. The majority of people listen to the purser and decide to stay put. Only a handful climb the tree and, once the chosen few are safely ensconced up in the only possible escape route, explosions sound in the belly of the ship, windows and skylights shatter in the ballroom, the Christmas tree topples back down to the floor, and deep, ocean waters surge in, drowning every last screaming, thrashing person who made the mistake of defaulting to what felt, instinctively, like the safest bet.
Working in the hospice field, one grows familiar with fear and its many, (many, many, many, many, many) snares. A fear of dying can often drive us to make unwise care and treatment decisions. From what I can tell, a lot of this comes from the profound lack of education and understanding that exists in this country around the dying process. The fierce denial we’ve embraced as a society doesn’t leave much room for the cerebral cortex to think about the subject at all, which means that most of the default choices people make at the end remain firmly embedded in the instinctual part of the brain. How could it be any different? There are few instincts more powerful than the one to survive and, if we don’t have some extraordinary and compelling reasons not to, we’ll naturally choose to continue treatments beyond (sometimes far beyond) the point where our doctors, or even we ourselves, think we should.
Yet at the same time, most of us don’t want to die wrapped up in tubing and drugged into a stupor, or with flash paddles sending electric jolts into our heart while our family looks on in traumatized shock. But it happens all the time anyway. Why?
There are a host of complex factors that contribute to the problem but ultimately one underlying cause rules them all:
We persistently and adamantly refuse to talk about dying.
We play right into one of Fear’s greatest snares. Fear loves the fact that we won’t talk about dying because that prevents the cerebral cortex from getting anywhere near our decision making. How can we possibly evaluate what’s been going wrong, learn anything new, or change anything for the better, without some calm, compassionate, respectful, thoughtful discussion about what’s going on? We can’t. Our fearful silence gives the old habits and instincts free rein and we default, over and over again, to the same flawed choices. That’s how, even if it’s the last thing we ever wanted, we still so often wind up cocooned in IV lines without so much as a spare patch of skin for our loved ones to kiss or hold.
This reluctance and failure to talk about dying is the norm in individual cases. But it happens on the national level as well, and a prime example of it just played out during the recent health care reform debate.
Remember the small provision in the health care bill (section 1233 of HR 3200) entitled Advanced Care Planning Consultation? (Otherwise dubbed, in a bewildering but imaginative twist, as Death Panels.) Amazingly, it constituted only three pages out of roughly 2000, yet it wound up hijacking the debate. Why? Because it asked us to start talking about the dying process. More specifically, our own dying process. It boldly and openly addressed the current, gaping need that exists for each of us to have a conversation with the doctor who’s treating us about how we want that treatment to look.
But in so doing this tiny provision struck a major taboo.
Let me reiterate here. The provision didn’t try to address how we’re treated, it just wanted us to start talking about how we’re treated, but it’s authors may as well have suggested we all drink poison Kool-aid. They failed to understand how profound the fear of talking about dying is in our society, and that failure is a big part of the reason why the whole thing blew up.
Personally, I think legislation of some sort is a good idea, but this version was doomed to fail. I mean, come on. Any politician planning to link death, law, and government is going to have to make a serious effort to engage the general citizenry in a calm, compassionate, respectful, informative, and thoughtful discussion about the whole thing first. They need to institute a massive educational outreach to explain why a conversation about end of life care is so essential.
They need to do a much better job of explaining its gift.
There are stories out there that we all need to hear. Stories about how drastically a simple end of life care discussion can improve outcomes for individuals, families, and entire communities. For instance, we needed to hear about the two studies done by Aetna insurance. The ones where the terminally ill who had access to both ongoing treatment and palliative and hospice care, cut their emergency room visits by half and their hospital and ICU visits by two thirds. Costs dropped by almost 25%. And most importantly, these people reported much higher levels of satisfaction with their care.
We needed to hear about the compelling evidence emerging from the Coping with Cancer study that suggests end of life care discussions not only decrease suffering and costs, but also increase both quality of life and even life expectancy. As Dr. Atul Gawande explains in his article Letting Go: What should medicine do when it can’t save your life?, “These patients suffered less, were physically more capable, and were better able, for a longer period, to interact with others. Moreover, six months after the patients died their family members were much less likely to experience persistent major depression.”
And then there is the interesting case of La Crosse, Wisconsin, where life expectancy is actually one year longer and end of life costs about half the national average. This is because some far sighted medical leaders in the community got together back in 1991 and started a campaign to get physicians and patients to discuss end of life wishes. Again from Dr. Gawande:
“By 1996, eighty-five per cent of La Crosse residents who died had written advanced directives, up from fifteen per cent, and doctors almost always knew of and followed the instructions…Answers to the list of questions change as patients go from entering the hospital for the delivery of a child to entering for complications of Alzheimer’s disease. But, in La Crosse, the system means that people are far more likely to have talked about what they want and what they don’t want before they and their relatives find themselves in the throes of crisis and fear…The discussion, not the list, was what mattered most.” (Emphasis mine.)
These amazing stories and others like them are currently opening a lot of eyes to the wide ranging gifts that come from having a simple discussion about dying.
It would have been helpful if we heard these stories before the legislation was introduced. A few realized their error and tried to get the news out, but it was too late. Fear had already seized another golden opportunity (politics!) and set its snare. The term Death Panels rose from the depths, Fear immediately latched onto it like a monster from a nightmare, and our group, instinctual brain responded with a great big Hell no!! Explosions sounded from the belly of the debate, windows and skylights shattered, and Provision 1233, like the Christmas tree, slowly toppled to the floor, destroying any hope for mutual, constructive discussion during this round.
Which leaves the majority of those who are currently dying in much the same position as the unlucky Poseidon passengers who decided to sit and wait. They’re still not having that conversation about end of life care choices, so they’re still missing out on the help, relief, grace, and extra time which are its gifts.
But there’s good news. We don’t need legislation to talk about dying. We can talk about it any time we want. We can figure out, right now, who it is we’d like to choose for us if a time comes when we can no longer choose for ourselves. Then we can talk with them, right now, as long or as often as we need to. We can tell them about what’s important to us and what scares us. What we’re hoping for and how hard it is to trust with something this big. And they can talk with us, too, about how badly they need to know what we want and how scared they are of making a wrong decision. About how much they love us and how afraid they are of the loss.
Then we can go in and sit down with our doctors and tell them, too, about these frightening, tender, sacred things we’ve discovered about each other and ourselves. We can give them the vital information they need to have, so they can care for us in the way we want most.
If we can do all that then the legislation that follows will be far more informed, compassionate, and respectful…the kind of legislation that everyone can trust…because we’re finally talking.
If you’d like to start talking about dying and end of life care but aren’t quite sure how to start, here are a handful of reading resources that might help jump start a conversation:
1) Dr. Atul Gawande, Letting go: What should medicine do when it can’t save your life? (13 pages long but more than worth the time required to read it.)
2) Final Gifts (This book is a huge favorite with the hospice crowd…curious, beautifully written, and uplifting. Good for easing fear.)
3) Palliative Care Blog (Fantastic resource for everything end of life and palliative. Contains a wealth of links to other resources as well.)
4) Talking About Death Won’t Kill You (The title of this book pretty much says it all.)
copyright 2010 Dia Osborn
Update 8/25/10: Here’s some news. Last week New York state passed a bill (The New York Palliative Care Information Act) requiring doctors to offer terminally ill patients information about different end of life options. It’s essentially Provision 1233 resurrected in state form. Behold! The Christmas tree rises again. What I found most interesting was that the bill was passed over the objections of New York State’s medical society. The doctors opposed it saying ‘the new law would intrude “unnecessarily upon the physician-patient relationship” and mandate “a legislatively designed standard of care.”’ Truth be told, there are studies showing medicine tends to attract people with the highest levels of anxiety about dying. Doctors as a group tend to be more reluctant to talk about it than the average person, yet they’re now the ones who are legally responsible in New York to initiate the conversation? Hmmmmm… What does this bode for the future? Hopefully, now medical schools and other sources of medical education will provide more training for how to talk about dying. As Dr. Gawande stated in Letting Go, it’s a skill that needs to be developed just as much as surgical skills. We’ll see. In any case I hope this will stir up more constructive discussion!