Following is Part Three of our email interview with Alexandra Drane, TEDMED 2010 speaker and founder of Eliza Corporation. Here are Part One and Part Two. In this final installment, Drane discusses work she considers critically important both personally and nationally, and what she does to maintain her own good health and considerable vitality.
Engage with Grace, the movement you co-founded to help families be better informed about and to cope with end-of-life decisions, is a force behind National Healthcare Decisions Day on April 16th. Can you talk about which current challenges in health and medicine have made these decisions more critical than ever?
We just don’t do end-of-life well in this country – and that stinks for a lot of reasons.
First, you only die once. Thank you, Atul Gawande, for making that incredibly straightforward point – among others – in this remarkable New Yorker piece about making our last days as pleasant as possible.
Second, since you only die once, die the way you want, and make sure your loved ones get that same honor. It’s a gruesome concept – except it’s not. Stay here for a minute. We live with such intent, why wouldn’t we want the end of our lives to have that same grace? Why wouldn’t we want to make sure our loved ones are treated with that same dignity?
Third, doing end-of-life well is a gift that keeps on giving, for the person who has a far better experience at the end of a life well lived, but as importantly for those who are left behind. There is no worse hell than second-guessing how you supported a beloved in his or her last days, particularly when what the system often provides – not by willful mal-intent, just by not knowing how to do anything else – is unnecessary and I would even say inhumane.
Fourth, with the demographics shifting the way they are, the magnitude of this problem is quickly going to become unmanageable. It’s bad for us as humans. It’s bad for us as a country.
And this is one of the only places in healthcare where we are all naturally aligned! Most people want less care at the end of life (70% of people want to die at home, yet only 30% do), and less traditional/intensive care usually produces better outcomes and a higher quality of life. Check out stats from the Coalition to Transform Advanced Care. The potential savings are enormous.
In other words, just by designing a system/process where people are informed and get what they want, we get better outcomes, and massive savings. Here’s the most beautiful thing about it, though. We don’t even have to bring up the cost savings! While they are relevant to those concerned with the disaster-pointing cost trajectories of our shifting demographics under current care models, just by getting people what they want, the savings will take care of themselves. So don’t focus on the cost; it takes away from the beauty of the story! Instead, focus on this: Just by giving informed people what they want at the end of their lives, we get better outcomes and a better quality of life. Why would we not want that?
When the ‘Death Panel’ fiasco came along, a lot of people, understandably confused by the baloney that was trumpeted about, stood up and articulated that they did not want Death Panels. Based on their understanding, they were right. But they missed the opportunity to stand up for what they did want. And every day that we let the current reality of how end-of-life usually happens continue, we all miss that opportunity.
Let’s agree together to do this better – for ourselves, for our loved ones, for everyone. Let’s articulate clearly, and loudly, a better reality. Doctors, we want to know what’s going on with us and with our loved ones in an advanced illness situation. We don’t want false hope, we just want you to be direct, and gentle in how you share with us. We want to hear our options, all of them, not just the ones that include more and more traditional care delivered in a hospital. We want you to involve our friends and family in these discussions. Let’s think together based on what options exist in these hard situations. We want our doctors to be okay with our choices – even if they include intentionally requesting less invasive care in return for a better quality of life. And most importantly? Most of us just want to go home.
This discussion matters. We need to have it on a national level, and we need to have it as individuals, as mothers and fathers and children and siblings and cousins and co-workers and friends, and as a population that cares a whole heck of a lot about living a good life, because the end of each of our stories should be just as glorious.
Engage with Grace.
What’s one thing you do every day (or as often as possible) to maintain your own health?
I laugh – all the time – at myself, at the inanity of how many mistakes I make, at how hard this all is, at how beautiful we all are with our extraordinary complexity and yet insane simplicity.
I say inappropriate things, because I can’t help myself, and because they are usually true, and because having real conversations is just fun. And people are generally more productive when you’re starting from a baseline of authenticity and joy and soul and humor.
I revel in the humility of the great joy that we, at this very moment, are alive. And that in and of itself is a gift. One to be cherished, one to be leveraged, one to be celebrated. I’m realizing in my old age that being successful is not about being perfect, or sometimes even particularly good at what you do. It’s about being slightly less screwed up than everyone else – at least for this moment – and caring a whole lot in the process. When you remind yourself that you’re lucky to be alive, that it’s never going to be perfect (for anyone), and then focus on the importance of what you’re trying to achieve, you just feel better.
And finally, I try to sleep more, love my family a lot, and remember to seduce my man on a regular basis.
I guess that’s more than one.
For more from Alexandra Drane, watch her TEDMED 2010 talk.