In “Dying” Is Still Alive I talked about the cost of focusing so much on trying to cure a life threatening illness that we risk going straight from being sick to being dead, with no time left for the opportunities that dying offers in between those things. In the comment section afterwards, Linda of What Comes Next? posed an important question: When fighting a life threatening illness, is it possible to embrace dying too soon…to forfeit the opportunity to rise above it and live longer? This is a great question and one that a lot of people ask.
What I’d like to do is break it down into two parts.
Part # 1) Is it possible to embrace dying too soon?
My answer, which probably won’t surprise anyone, is absolutely not.
Personally, I think we should all start embracing dying (i.e. looking at it, accepting it, and using the daily awareness to live as wisely and fully as possible) early on, ideally in childhood. The opportunities for exposure are rife. Like the first time we see our father crush a bug, or our mother put a cooked leg of something on our dinner plate, or have a family pet die, or hear about our little friend Emily losing her grandpa. As I’ve mentioned before, it’s never hard to find dead bodies scattered along the side of pretty much any road in America and, if all else fails, there are the innumerable references to, and reports of, dying and dead on the news twenty-four hours a day.
However, since children learn how to embrace dying from their parents, and since most parents don’t know how to teach it, most of us wind up as adults lacking the skill. In fact, most parents not only fail to teach how to embrace it, they treat it as something unspeakable and do their best to hide it. The most common metaphor for dying used in our culture is The Enemy, a horrible, looming foe to fight against tooth and nail, both bitterly and indefinitely.
As a result, most of us don’t learn to embrace dying as the last, natural, grueling-but-luminous stage where, if we’re lucky and blessed, we have the time necessary to successfully wrap up our life. Instead, we deny it as long as possible which can drastically shorten or, sometimes, even eliminate the opportunity to fulfill our end-of-life tasks. Most people don’t seem to realize that it takes time, sometimes a lot of it, to wind up our affairs, make our bequests, and absolve and be absolved by those we care about. To link trembling hands one last, aching, transcendent time and say I love you. I’ve always loved you. I will always love you.
As a death averse society, we haven’t fully grasped yet that dying at peace, with no regrets, and with our loved ones prepared for a life without us afterwards, is a necessary and worthy goal.
Instead, most us learn to look at dying as the gruesome, terrifying end of everything. To run. Run! Hard and fast, for as long as possible toward escalating medical intervention; drugs, surgeries, and treatment regimes that can not only consume most of the time we have left and create more layers of suffering, but actually shorten our lives as well.
In La Crosse, Wisconsin, where end-of-life discussions are the established, accepted norm, life expectancy is actually one year longer than for the average American population. And a 2006 study by the NHPCO found that the mean survival rate for patients on hospice was 29 days longer than it was for patients who were not on hospice.
For a person who’s spent their entire life regarding dying as something horrific, it’s a real challenge to switch gears, turn around, and embrace it when it finally comes. Not impossible mind you, but definitely harder.
Helping people make this switch was one of the major goals we always worked toward in our hospice. We fought hard to help people make the difficult transition from fighting for life to accepting dying because we saw, consistently, what a profound and healing difference it makes. There’s more trauma involved when the state of dying is embraced late, or never embraced at all. There just is. Sometimes this is unavoidable, as in the case of a swift or sudden death. But more often in today’s medical system, it happens as a result of focusing entirely on finding a cure without also preparing for dying.
Which brings me to the second part of Linda’s question.
2) Is it possible to forfeit the opportunity to rise above it and live longer?
While this question initially seems to reduce the situation to its simplest elements, I think it’s actually creating a trap. To explain, I’d like to use a teaching story.
Imagine you were born with a trust fund, and in this trust fund was a billion dollars. All your life you’ve been able to draw from this fund whenever you wanted, using the money for any old thing your heart desired. While you learned early on that the trust would eventually wind down and close, everyone was kind of fuzzy about the dates on that part. So in the end you just kind of forgot about it and started spending.
Then one day your lawyer calls to tell you that the termination clause has been activated. He’s learned that you’re going to lose access to the funds in about six months. He knows there’s no way to break the clause entirely, but he thinks that if you fight it, you might be able to win a temporary stay. Buy some extra time. The tricky thing is, you have to draw down the money in the trust fund to mount the court battle.
You now have three forces at work:
First, there’s the hope: You might win extra time and still have some money left in the fund afterward.
Second, there’s the real and measurable cost: You’ll be diverting money to the fight and depleting the funds you need for everything else in your life.
And third, there’s the risk: Court costs these days can easily eat up most of the trust. Even if you eventually win more time, the funds might already be exhausted.
Considering these three things, you really, REALLY need to ask yourself some important questions before you decide on a strategy. The trick is what are the best questions to ask? Naturally, you want the ones that will give you the most insight and wisdom, the ones that will be most helpful in guiding you in your choices during the time you have left. So what are those questions?
Linda’s question, adapted to our metaphor, is one possibility. If I just accept the clause and forgo taking it to court, will I miss the opportunity to use the trust fund longer? The answer? Well…yeah. Of course you would. The answer to that one, just from the standpoint of pure logic, is obvious. Which initially makes the right choice seem like a no-brainer. Of course you should fight. Anything else would be giving up.
However, this way of looking at it is actually misleading. It makes it sound like, universally, there’s only one possible option that everyone should always make. But that’s not true. Why? Because every person is different; with different needs, different dreams, different circumstances, different ages, different strengths, different fears, and different prospects. All these things need to figure into the choices that each person makes, so the questions we ask need to include them. Ideally, they’d run more along these lines:
Okay. Exactly how much extra time are we talking about fighting for here? Rough guess, what are the odds of my winning this fight? Am I really interested in betting the farm on longer, riskier odds? Just how much money is left in the fund to fight for at this point anyway? Is there something other than legal fees I really want or need to spend that money on? What will I lose by mounting a fight? What’s more important to me; having the funds available to spend in the future, or spending them today on what I love?
And what is perhaps the most important question of all: How much of the fund should I reserve for what I love, value, and cherish the most, to ensure I have no regrets–that my loved ones will still be okay–when the trust eventually closes?
The metaphor of a trust fund is apt because, in reality, life isn’t something that belongs to us. It’s not like our mothers gave birth and then picked up a receipt at the front desk. Life has never been ours, something we’re entitled to own and control. On the contrary, it’s only ever been a miraculous, incomprehensible, immeasurable resource controlled by something else too big to understand. Life is something that we didn’t earn and don’t even necessarily deserve, but that we nevertheless get to use however we want, for free.
To me, life is exactly like a trust fund…only times a gazillion. It’s our fortune. Our treasure. A limitless, jaw-dropping, sphincter-releasing wealth beyond our wildest, freaking dreams. I’m talking real-life fairy tale here, a winning-the-biggest-lottery-of-all-time kind of luck. A staggering, incalculable store of riches that’s set up in trust for us when we’re born and that we get to draw on and use for as long as we’re here.
But of course, as with all fairy tales, there is that one small catch: We only have access for a limited time. And while the question how much time? is certainly a compelling one, it’s unanswerable. For me it’s more valuable to ask instead, What is the best and brightest use of whatever time I do have?
The medical mindset at work today tends to glorify the fight to live, and skim over the deep human costs involved in such a fight. This often leads people to continue fighting in the face of increasingly long odds, instead of devoting their remaining energy to fully living whatever time they have left. It’s surprisingly easy for the fight itself to take over and become the goal. That’ why it’s so important to remember that the fight is only worthwhile in so far as the life it seeks to preserve is worth living. When it begins to consume and destroy that life instead, then it’s time to stop.
We’re living in a transitional age where developing technologies have granted us miraculous gifts. We’ve gone from having little to no choice at all about how we die to an overwhelming explosion of options and, even though we don’t have any more power to prevent death today than we ever did, we’ve developed an extraordinary, mind-blowing capacity to manage its timing.
However, there’s still a gaping hole that exists between these developing powers and our understanding of how best to apply them. Subconsciously, we’re wrestling with a lot of confusion. All the old instincts about dying are alive and well and active, lurking just below the surface. We’re still firmly in the grip of old memes, superstitions, beliefs, and attitudes about it, only now we’ve added layers of wild (and often unrealistic) expectations born of a new, more sophisticated world. Our collective understanding and response to dying, developed through tens of thousands of years of helplessness, hasn’t evolved as quickly as our intellectual, technological knowledge, creating turmoil and chaos. But it’s also opened the door for some amazing exploration and new possibilities in how we want to ultimately embrace and manage the way we die.
We’re living in an exciting, intoxicating age where we’re all medical pioneers, where we all get to explore and experiment in our own lives with how best to apply this new wave of knowledge. I suspect, as we evolve and mature in our understanding of what dying and death mean in today’s world, we’ll become more skilled in balancing our profound desire to live with a deepened, more authentic acceptance of dying. We’ll discover new and wonderful ways to navigate, treat, live…and still dance…with chronic and terminal illness. Ways that, today, we can’t even begin to imagine.
I think the current, explosive growth in medical possibilities offers us a parallel opportunity, both as individuals and societies, to grow and develop at a pace that simply wasn’t possible before. We now have the chance for our deepest humanity–our collective courage, generosity, insight, humility, and wisdom–to grow at the same exponential pace as our technology.
Personally, I love it.
copyright 2010 Dia Osborn
This is one of your best posts…even though I say that a lot after each one. On this theme, have you explored, or could you, the different contexts between Hospice and Palliative Care. It seems like western medicine is leaning towards Palliative and “pushing away” from Hospice. I would love to hear your thoughts.
Thanks Cal! As for the shift from hospice to palliative care taking place these days, you know that’s been on my mind a lot. 🙂 While our medical system really needed to incorporate palliative (comfort) care into it’s overall care strategy, and the strides they’ve made in that direction are a real blessing, there’s a risky underbelly to the whole thing where the dying stage is concerned. Depending on how it’s integrated, palliative care can offer some huge support for our instinctual drive to deny that we’re dying in the first place. A great topic and one that I’d love to explore more!
The New Yorker article that you linked to made me think about my mother’s death and the lead-up to it. She so surprised me when she was given an option of death or dialysis. The description of life with dialysis that I heard from the doctors did not sound anything at all like the life she had always espoused. But I discovered how strong the lure of hope is and how denial translates plain English.I like Susan Block’s question: “what level of being alive is tolerable to you.” I wish I could revisit our discussions with my mom’s doctors. I wonder if there would have been an opportunity to lay things out for her differently and to have allowed her to embrace death more gracefully. She surely left unfinished business and neither absolved or was absolved by her oldest child
ACH! Mistake!!!! Sorry about the above. As always, your post made me think and write too much for the comment section. I will be posting my reply to your post on MY blog….
Linda please!! Don’t ever apologize for commenting woman! That’s what this section is for. Room is unlimited on blogs you know. I love your comments, they’re stimulating and get me thinking about different aspects and perspectives on any given post. Having said all that, I’m also really glad that you feel like carrying the discussion over to your blog as well! You know me, it’s all about getting a conversation going. 🙂
One of the downsides to having so many successful interventions available for delaying death is that we frequently have to actively, consciously choose when we’re going to die now. Either for ourselves or for someone we love. This can require a staggering level of either courage or suffering to do it. I’ve seen and known of a handful of people who were both self aware and compassionately caring about their loved ones enough to do it wisely and gracefully. But most of the time there’s more flailing involved. More missed opportunities. More choices being made by the seat of their pants, so to speak. That’s why I’m such an advocate for accepting, facing, and embracing the ultimate reality of dying before it even comes up. (I love the way they do it in La Crosse, Wisconsin.) For someone who’s already done that work, there’s a larger, existing framework of understanding already in place that makes all the many, many individual choices along the way far easier.
statement 1 ( I havent got time to respond to number 2!!)
Children rationalise death around 7 or 8
it is a normal part of growing up and most children cry and get upset at losing parents but generally more importantly grandparents at this time…
this is a time that pets come into their own…. my advice to any worried parent is buy a guinea pig
after a couple of seasons said pig dies and children learn a valuable and practical lesson!
the pet needs to be fluffy though
NOT A GOLDFISH
a dead fish is lightyears away from something warm blooded which can be associated with gran and grandad!
hey ho x
I didn’t know age 7-8 was when kids can start to grasp dying on a rational level. I’m a huge fan of children having pets for a lot of different reasons, but I agree they’re especially valuable for acclimating children to the realities of dying in a more gentle way. We had a pet funeral with my daughter when her pet rat died and it was a moving and invaluable learning for all of us. I still have the most vivid mental image of her sitting with the deceased in her hands, (who was wrapped in a little shroud,) next to a hole in the ground we’d dug. She was out in the middle of a meadow wrapped up against the cold in a blue shawl of mine, and she’d asked to be left alone with him for a while before we actually buried him. I was back inside the house watching and she looked so small and tender and beautiful as she cradled him for the last time. She was about seven years old then, come to think of it, and she still remembers the whole thing.
We had a guinea pig, too, but the dog ate him. Not quite so tender, that one. 🙂
Funny, I would never have had the words to ask for time alone when I was 7 years old. I find that, alone, a testimony to a tender and nurturing childhood environment.
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