Odd Thing About Dying #2: We’d like some destiny with our death please.

450px-Atropos

Atropos of the Morai (One of the Sisters of Fate)

In the previous post Odd Thing About Dying #1: They’ve blocked most of the exits I talked about how challenging it is to die these days because the modern medical system has evolved to prevent it wherever possible, even when a person reaches the end of their natural life and is more than ready to go.  And so far hospice (along with the growing palliative care specialty which often goes hand in hand) provides the only officially sanctioned exit where people are allowed to leave the system without a fight.

Now, that being the case you’d think that everyone who didn’t want extraordinary measures taken to extend their lives would be fighting to get enrolled in hospice as early as possible, yes?

Well, no.  Far from it.  Hospice care is one of the most misunderstood and underutilized services out there while, where palliative care is concerned, the majority of people haven’t even heard of it yet. There are a number of reasons for this (including the fact that most people don’t WANT to understand them because it involves talking about dying) but there’s one reason in particular I’d like to discuss here and it essentially boils down to this:

Most people feel to some degree that, if they enroll in hospice, then they’re choosing to die.

This isn’t true for a couple of reasons:

1) When a person enrolls early enough, hospice is about deciding to LIVE WELL UNTIL one dies.  It’s about life, not death.

2) Dying isn’t really a choice to begin with, it’s a destiny. Choice implies we could decide not to die if we didn’t feel like it which of course we can’t.

People aren’t entirely wrong however. Due to some brilliant medical and public health advances we don’t usually “just die” anymore, we have to choose when; when to stop seeking treatment, when to forego that surgery, when to surrender to that infection, when to decline that CPR, or when to remove that ventilator.  Either we or our loved ones have to huddle with our doctors, weigh all the options, and then consciously decide whether to fight for the possibility of extra time or to let it go.

Of course at first we hailed these advances as unqualified blessings but over time it’s turned out that all the new choices can create something of a burden, and sometimes a curse.

You see, there really isn’t a clear point anymore where a doctor has to tell a patient, “I’m sorry but there’s nothing more we can do.” There’s always something more they can do, which means that until a person get decisive and say, “No, that’s it, I’m through. Please stop now,” chances are the doctors will keep suggesting something else.

Just so you know, this is a sea change in the way we humans face death.  It’s historic.  As far as I know, never before in human history has there been a point where the majority of people had to consciously choose when to die, or have a loved one choose for them. This development is an unintended consequence of all our new medical possibilities and, along with the miraculous blessings it bestows, it also requires that we now stand up and assume a level of responsibility for our own death that was unimaginable just a few decades ago.

Only we don’t really want that kind of responsibility.  Turns out one of the things we actually liked about the old way of dying was that we didn’t have a choice.  Destiny used to shoulder that burden for us, which we thought we hated at the time but are now starting to realize was maybe not as bad as we thought.

For a while everyone thought that of course our doctors would take over from destiny and let us know when “our time” had come.  But it turns out they don’t want that responsibility either and, honestly, who can blame them? The burden of telling someone they’re going to die is extraordinary, even when a person wants to know.  And if they don’t?  Well, that can be a lawsuit.

So doctors try and sidestep any kind of straightforward prognosis and hand us the research and statistics instead, from which we then have to try and divine the tea leaves for ourselves.  In addition, the majority of doctors still tend to encourage us to pursue aggressive treatment, often far past the point where they would themselves, with the stated goal of preserving hope but really for the purposes of distraction.  While they often have a good idea when a treatment will be futile, they also know that even a futile treatment can offer us temporary shelter from our terror of dying, which on the one hand is genuinely kind and deeply human, but on the other is a lot like that old bear attack joke:

Question: What are you supposed to do when you’re being attacked by a bear?

Answer: Run like hell.  It can’t save you but it’ll give you something to do for the last thirty seconds of your life.

Only dying is now taking a lot, lot longer than thirty seconds and people are starting to feel like there are better things to do with that time.  But our instincts work against us.  Seeking further treatment still feels like the most right and natural thing to do, and besides everyone else is seeking further treatment, and on top of that there’s major disagreement about when it’s wisest to stop because it’s completely different in every case.

So to recap, while destiny is still in charge as far as death itself is concerned…we all still die…our medical advances have allowed us to seize more control around the timing issue.  Only that means somebody now has to decide when to treat and when to stop, and while we’d mostly prefer that our doctors made the decision since they know so much more than we do, they’re proving reluctant.  Which leaves us to make the choice ourselves, only 1) we don’t know enough to make an informed decision, and 2) we’re unwilling to educate ourselves because that would mean actually talking about dying and we don’t want to do that either.

The whole situation reminds me of a teenager who wanted nothing more than to move out of the house and call all the shots, only to discover the new freedom requires getting a job to pay the bills.  Well, it looks like our new miracles also demand that we assume more responsibility. We’ve created a bewildering array of new choices around the question of when we actually have to die and our new job is to figure out what, among all those choices, constitutes a wise one.

Next up, I’d like to explore some of the reasons why the current choices we’re making aren’t working out so well.  I’m curious to see if breaking them down and examining them more closely might suggest better options.  And, as always, If anyone else has some thoughts on this subject I’d be eager and curious to hear them.

copyright Dia Osborn 2013

Related articles:

A Better Way To Die

Advertisements

How to talk with someone who’s dying.

There’s an extraordinary video blog I’ve been following for a while which chronicles the cancer adventures of a man named David and it’s been heartening to me, watching someone talk so freely and openly about what it’s like to face the realities of catastrophic illness and the possibility of impending death.  David is very engaging.

I was a little late to his most recent post (posted back in June) but it appears that after a glorious period of remission his cancer is back, with a vengeance, and the prospect of impending death has now turned into the certainty of it.  This video addresses the various thoughts coming up for him around the sudden turn of events.

I HIGHLY RECOMMEND WATCHING THIS for anyone who’s ever wondered what in the world they’re supposed to say to someone who’s dying.

It’s about ten minutes long and worth every second.  David covers what it feels like to have people tell him that he still looks great, or talk about/plan future events that he’s not likely to share in, or in other ways try to skirt or deny his new dawning reality and place him in a position of having to pretend like everything’s still okay.

Then…and this is the extraordinary part for me…he talks about what it’s really like living in the constant awareness that everything he’s now experiencing is probably for the last time.  How in some moments he experiences great fear of the passage to come and how at other times the world around him is highlighted with an exquisite, poignant beauty that’s both heartbreaking and luminous.

These are the kinds of things that all dying people think about but usually find it difficult to share.  David is brave and articulate enough to step up to the plate and actually tell you about it.  I warmly invite you to take advantage of this rare opportunity and learn from him.  It’ll hopefully help make your next encounter with someone who’s dying more nourishing and comfortable for you both.

UPDATE: The hubster pointed out that, in spite of the promise in this post’s title, neither David nor I gave any explicit instructions about how to talk to someone who’s dying.  (It wasn’t David’s intention in the first place and I…well, I just dropped the ball.)  To remedy the lapse:

In a nutshell, don’t run, don’t deny, don’t deflect.  Instead, listen carefully to what they’re trying to tell you, let it in, then follow their lead….as best you can of course.  There’s always a learning curve so be patient with yourself.

That approach usually opens up whole new worlds.  –Editor

Random Hot Tip About Dying #4

(This post is continued from…wait for it…Random Hot Tip About Dying #3.)

Up next:

Tip #4: A “good death” is good for everyone.  A “bad death” is bad for everyone.  As a group we need to be shooting for a lot more good deaths than we are.

This tip is proving a lot harder to explain than the first three, perhaps because I only came to understand it myself by accident.  The way that each person dies affects FAR more than just the person who’s dying and those immediately around them, but I didn’t really understand that at first even though it seems so obvious now.  I arrived at the insight as a side effect of two other things I was doing:

1) Observing a lot of people die in a variety of ways from an assortment of causes while working with hospice, and

2) Listening to a lot of additional people tell me stories about their exposure to death and dying ranging from war zones, to murder and suicide, to accidents and mistakes, to emergency rooms and ICU’s, to the experiences of a friend during his brief stint working in a slaughter house long, long ago.

(And yes, animals, too, can die both good and bad deaths which yield a lasting influence…something else to think about.)

I’m not a counselor or anything, I’m just interested in people and like to hear their stories…which was usually all the prompting needed.  It was a little disconcerting to learn how many people there are out there who want and need to talk about these events with almost no chance to do so.

On the other hand, it was very heartening to see how much being able to talk about it…even once with a complete stranger…could help them.  It was like watching someone carrying a boulder around on their back finally put it down and rest for a bit.

Anyway, I discovered a trend that’s also been born out in the research (and is actually just common sense.) People who experienced someone dying badly suffered more lasting trauma than people who witnessed someone dying well.  They wound up needing more help themselves to deal with the trauma afterwards, it took them longer to recover and often only partially, they were less productive in their lives than they had been before the experience occurred, and their trauma translated into varying degrees of additional burden for the people who loved them.

And then these other people wound up passing on some of the burden on to their extended world.  And so on.

It’s the ripple effect.  Think of each death as a rock getting dropped into a pond, they all disturb the stillness of the water.  Each time someone dies the fierce energy it creates spreads out into their extended world and a whole lot of people…both loved ones and perfect strangers…wind up getting rocked by it.  Sometimes small rocking, sometimes capsizing.  Depending on how any one person dies it can eventually result in disability, alcoholism or drug abuse, divorce, bankruptcy, dropping out of school, estrangement, broken families, job loss, business failure, phobias, health breakdowns, and on and on.

Dying is an incredibly powerful force.  It just is.  That’s not something we can change.  But we could certainly do a better job of managing that force than we have been.  There are so many things that can be done to minimize the damaging influences and maximize the powerful healing potential that’s also available.

We really do have some control over the size of the rocks going into the pond.

So what’s the difference between a good death and a bad one?

First of all, a good death is not a black and white thing…which probably contributes to a lot of the confusion about what it is.  A good death doesn’t mean that you have to die in old age in your sleep, lying on white linen with hands folded over your breast and a beatific smile on your lips, all your loved ones sitting around the bed waving flowers and joyfully singing hallelujah, take them home.  Far from it.  It can happen in an infinite number of ways.  A good death can even be pulled out of raging carnage at the last minute sometimes.

(Seriously, you wouldn’t believe how powerful last words and gestures and other interesting phenomena can be.  They can have an effect that appears damn well miraculous to the naked eye. If we really understood as a society the force that’s available during that little window of time, and everyone started learning how to consciously harness it and put it to good use instead of allowing it to just randomly blow lives up the way we tend to now…well, I don’t know what would happen exactly.

But I suspect the rippling, transformative effect on our communities would be similar to the transformative effect it already has on the individuals directly involved.  Only collectively.  And if I’m right, there’d be a lot more hope, courage, and recovery going on and lot less crippling dread and futile treatment.)

Anyway, here are just a few things that can contribute to a bad death and increased trauma for everyone involved:

Violence, suddenness, youth, futile treatments, isolation, regrets, denial, poor communication, lack of control, abandonment, ignorance of the process, previous experience with bad deaths, in-fighting, lack of cohesion among loved ones, confusion, medical mistakes, insurance problems, uncontrolled symptoms, selfishness, poor quality care, and lack of help and guidance among others.

The list really does go on and on but I personally would put poor communication and lack of help and guidance at the top.  With those two in place it’s far harder for the others to breed and multiply the way they tend to otherwise.

Obviously, some of these things are harder to manage than others.  Accidental and violent deaths tend to cause the most damaging ripples, but a couple of ways these deaths are converted into good deaths is if they at least happen while the person’s doing something they believe in or love, or if some meaningful change can be effected in the world because of their death. It’s when they’re entirely random or pointless that recovery becomes most difficult.

Suicide, of course, is generally held to be the king of bad deaths.

Having said all that though, sudden or very quick death only happens to roughly 10% of the population.  The window in which to work on a good or bad death is going to be longer for the other 90% of us.

So what contributes to a good death?

Good communication, good education about dying, previous experience of good deaths, a long life, acceptance of dying, good relationships, respect of the dying person’s wishes, cohesion among loved ones, palliative and hospice care and adequate insurance for both, caring about the others involved, effective treatment of symptoms, loving care, completion of end-of-life tasks, enough time to get everything done, faith in something, and valuing the life still remaining among many, many others.

Enough!  I’m at about a million words now and have worked on this post for three weeks.  I really need to let this go now.

Next up: Random Hot Tip #5: There’s some version of an afterlife/afterwards for everyone.  Pick yours and start making it work for you now.

 

 

Random Hot Tip About Dying #2

This post is a continuation (well done, me!) from the last one: Important Writing Skill: Follow Through.

Random Hot Tip About Dying #2 went something like this:

“Accepting dying might not always make it easier when it comes, but being horrified is guaranteed to make it worse.”

Once upon a time on a flight from Denver to St. Louis I found myself seated next to a late-boarding, extremely chatty, middle-aged woman from New Jersey who kept up a non-stop flow of conversation with everyone who would listen from the minute she first came through the front door till I got off the plane in Missouri.  I’m fairly friendly when I travel but this woman put me to shame.

I was on the aisle, she was in the middle, and a handsome thirty-ish man sat next to the window on her left.  Predictably, she engaged Mr. Handsome first and they conversed for close to half an hour before she finally turned towards me, smiled brightly, and commenced her interrogation.  We got through where are you coming from? and where are you headed? in less than a minute after which she asked me the question I’d been waiting for: So what do you do?

I smiled and said, “I work with hospice,” then sat back to watch the show.

She didn’t fail me.  In fact, she was magnificent, it was hands down the best display I’ve ever seen.  She froze at the word hospice and went pale, eyes widening and mouth forming itself into a mute little “o” as if she’d just discovered she was sitting next to the grim reaper.  She stared into my eyes for probably ten full seconds (which is a very long time to just sit there and stare at a complete stranger without saying a word…go ahead, time it) and then turned her back on me and engaged Mr. Handsome in forced conversation for the rest of the flight.

I chuckled and went back to my book.

Paul_Gustave_Dore_Raven1

Illustration of Edgar Allan Poe’s Raven by Gustave Dore (1832-1883)

Her reaction was extreme but hardly unusual.  I’d guess somewhere around ninety to ninety-five percent of the people I told over the years fell somewhere along this squirming-to-bugeyed spectrum when they learned that I worked with the dying.  Only a handful were open and willing to talk about it, which tells you something about us.

Needless to say I never chuckled when I saw this kind of horror in a person who was currently dying, or someone who loved that person who was dying, mainly because it’s so. not. funny. in real-time.  It’s tragic.  In the person who’s dying it can produce varying degrees of self-loathing and bitterness, while in a loved one it either keeps them away or, if they do force themselves to swing by and stand uneasily near the bedside for a half hour, it can make the dying person feel so bad that they wish they hadn’t come.

Look.  Dying is challenging, even for those who are ready for it.  I’d be lying to you if I told you otherwise. Physiologically, it’s full of graphic processes that are uncomfortable, undignified, and unlovely.  Emotionally, saying good-bye to everything you’ve ever known and loved is a bitch.  And existentially, everyone has to face that this is it and decide what kind of afterwards they’re looking at and deal with that if necessary.

It’s a lot of work, but just like any other kind of work, how you approach it makes a world of difference.  During my years in hospice I saw a lot of people die well, with dignity and humor and sorrow and regret and suffering and love and acceptance all bundled together in a final package of overall grace.  Without exception, these were people who eventually accepted that they were dying and found something in their life to care about to the last anyway.

And BTW, they didn’t do it alone.  They did it with a lot of help and support from those who loved them, as well as the hospice team who was working like crazy to make it happen for them.

I should mention here that everyone is a little bit horror/little bit grace when it comes to dying. That’s part of being human, to encompass the full range, and if you find you’re currently coming down hard on the horror side of things, don’t worry.  It’s perfectly normal for the shift to acceptance to be gradual and erratic and to some degree it keeps happening all the way to the end.

But it does take effort which is why accepting dying is a good goal to set your sights on now, wherever you are in your life.  It can not only improve the quality of your dying time when it comes, it can also improve the quality of your life long before then.  Not to mention that it also improves the quality of life for everyone else you know who’ll be dying before you do.  Dying is a social activity that affects the entire community so ideally we’d all be pitching in to support and include whoever’s turn it is more than we do.

Trust me, whether you’re dying yourself or visiting someone else so engaged, compassion and acceptance will do far more good than revulsion and dread ever could.  Dying is hard enough work without piling that on top of it, too.

copyright Dia Osborn 2013

Elders and the Strange Gravitational Effect of Final Mystery

image by chrisroll

My elderly father-in-law (I’ll call him Mon Pere) is living in the light of two very different worlds right now.  In the first, he pursues everything he enjoys with great flair.  He goes out dancing with his ladylove, attends continuing education classes at the University, tells his same beloved, off-color jokes over and over again, and takes long, contemplative walks by the river every afternoon.  In the second, he lives with metastatic cancer.  Mon Pere is what’s known as a character, and he navigates both worlds with the same idiosyncratic grace.

His cancer is slow growing and if it weren’t for a preventive screening test some time ago, he wouldn’t have even known it was there until recently.  Because of his age at the time of discovery, and because the likeliest outcome of treatment would have been to erode his treasured quality of life, he declined anything aggressive and has instead lived pretty much the same life he lived before, only with the uncomfortable knowledge that a force he could neither see, feel, nor resist was relentlessly growing inside him.

This burden of helpless knowing strikes me as unnecessary and a little cruel but, as far as I can tell, Mon Pere has no regrets.  All our conversations eventually drift to the topic of how grateful he is for the life he’s led and the deep pleasure he now takes in his daily routines.  For all I know, without the useless knowledge of his cancer over the years, he might not be feeling this heightened sense of gratitude and pleasure.  Perhaps that’s what makes the added burden of fear he’s also had to live with worthwhile.

Mon Pere has been, all his life, every year, an avid traveler but that, too, is changing.  This morning he refused an invitation from the hubster to go on a fishing trip to Maine, emotionally disclosing that, these days, he longs more for the simple charms of home.  There’s a creeping pain to be dealt with and instinct is whispering it’s time to rein in the adventures.

I’m moved and fascinated by the unconscious courage he displays.  He’s unusual in that he’s always been willing to talk about his own death as well as the life he’s determined to live on the last leg of his journey there.  He’s been clear with us all that, for him, living fully is more important than living longer.  While he’s prepared to surrender to the naturally occurring indignities of dying, he’s determined to avoid any additional medically inspired ones, and so far he’s shown an uncanny instinct for sniffing out and avoiding most of the interventions that might extend-but-strip his life simultaneously.

I admit I’ve been tracking his choices closely over the years, and I’ve learned a lot from him. The truth is that, like him, we all dream of living fully until it’s time to die.  The problem is our healthcare system isn’t designed for that.  It’s not designed to allow dying at all.  It’s designed to keep everyone alive as long as medically possible and, while that’s a decided boon during the healthy years, its lopsided effort at the end is now churning up so much turbulence that a simple death has become a rare event indeed.  I’ve looked into the haunted eyes of too many surviving loved ones and seen the same regret there; They never wanted to die like that. 

Everyone agrees there’s a problem, and there are many good efforts afoot to change it, but in the meantime passing through the medical system during aging is a lot like swimming downriver into ever-increasing amounts of flotsam and jetsam.  There’s so much to get snagged on that it requires an almost impossible degree of knowledge and native cunning to navigate through it all unscathed.

But Mon Pere is doing surprisingly well.  He’s like an old trout, refusing to rise to the fluttering lures cast over him, sinking lower into the water instead.  He’s not susceptible to the whispered promise of extra time because, as he so often says, Been there, done that, bought the t-shirt.  He doesn’t have a bucket list left of things still to do because he already lived his whole life doing them.  What he craves now are the infinitely dear, small pleasures of life.  To walk and learn, laugh and dance, savoring the wonder of each new day.

This gradual slowing reminds me of the other elders I worked with and how they, too, started to bend and change under the weight of this approaching mystery.  It often seemed like they were nearing something I couldn’t see, something with an immense gravitational pull to it, as though the closer they circled in, the denser and heavier they became.

I used to think of death itself as a null and empty void…a dark nothingness, an absence-of…with physical life perched on one side and, hopefully, some kind of spiritual life on the other.  But that was before I spent time working around its edges, before I discovered the strange, luminous field this final Unknown generates.  Some have called it the light of dying, which I’ve also glimpsed, but at the very end, in those last hours before a person dies, it took on an additional dimension.  It felt like an immense current flowing through the home, as if some subtler kind of electromagnetic field was in motion.  I noticed everyone’s emotions, muscle contractions, and breath seemed to unconsciously synchronize with it, and my own response was the same each time.  My skin would tingle and hair rise, my heart would first fill with a vast ache and then suddenly contract and break in one sharp blow.  And out of the pain it would delicately unfold again like some kind of pulsing sea anemone, opening up its thousand waving tentacles to grope the passing current…for what, I still don’t know.

The experience was reassuring but disorienting, too. There were a few times after returning to my car when I had to just sit and grip the steering wheel for a while, dazed and bemused by how sharp and crystalline everything looked, as if I was gazing out through a long-smeared window that had finally been cleaned, before the strange afterglow would fade enough for me to drive safely away.

I don’t think of death as an empty void so much anymore.  I’m not sure what I think instead, I can’t make make sense out of something I’ve only glimpsed, but the thought of it makes me feel curious, calm but a little nervous, and breathless.

Mon Pere is hardly dying yet, he may not for years, but he’s slowing.  Turning.  Caught in the outermost edges of that pull now and commencing its widest spiral.  He’s a little sad sometimes, a little scared, but mostly he’s head over heels in love with his life, as he should be.  As we all should be.

This is the most amazing ride.

copyright Dia Osborn 2011

“The Good Short Life”

The New York Times ran a great opinion article by Dudley Clendinen last Sunday called The Good Short Life.  Great title.  It’s about just what it sounds like.

Mr. Clendinen has A.L.S., the best known of the motor neuron diseases which are generally held to be one of the most difficult ways to die.  It involves a gradual shutting down of the involuntary nervous system which, when left to its own devices, leads to a very, very slow suffocation.  The disease takes years to play out and is beyond horrible.

In the article he talks freely, openly, and gracefully about the good and bad involved with dying…and I love him for it.  He’s refusing to disappear into that cloud of gray mist where we so often relegate our dying–that place where we don’t have to see them or deal with them or think about what they’re going through.  Instead he’s speaking up (or writing up in this case), doing his part to maintain a normal, ongoing, comfortable chat about the whole thing.  About dying, that one other universal reality besides being born and drawing breath that we all have in common.

The article is two pages and worth a read.

He broaches a number of controversial topics including the overwhelming costs involved with long term medical care for a condition such as his and the moral question of who’s going to pay for those costs (…the respirator and the staff and support system necessary to maintain me will easily cost half a million dollars a year. Whose half a million, I don’t know…)  He also talks about the choice he’ll have to make about when he’ll die because that’s something those with a motor neuron disease always face; when to fight it, when to manage it, and finally how to either surrender or escape it, whether through the blessing of pneumonia or other infectious disease or a method more proactive.

Of course these are extremely loaded subjects to address, ones which tend to invoke some very strong emotions in people, but that doesn’t mean we don’t still need to talk about them.  Our medical system has advanced to the point where most of us are eventually going to have to face the same kind of choice as Mr. Clendinen.  A lot of people don’t understand this yet but most of us won’t just die anymore.  Medical advances have made it possible to sustain the barest physical functioning for indefinite lengths of time, usually far, far longer than anyone desires.  This means that sooner or later someone has to actively, consciously decide that we’re going to die.  Either we decide to forgo further treatments, our loved ones decide to withdraw life sustaining measures, or somebody else decides they’re not going to pay for it or provide us care anymore.

This is the darker underbelly–the turbulent, terrifying, whitewater rapids–we’ve created with our brilliant, modern, technological capabilities.  For better or worse, these are the kinds of choices that now go with the territory and we are all going to have to learn how to navigate them.  There’s no such thing as a gift–however miraculous, however blessed–that isn’t also accompanied by a burden of responsibility.  In this case we now need to learn how to bear the burden of miraculous choices.

Not everyone will agree with the particular choices Mr. Clarinden eventually makes–which is fine, everyone doesn’t have to–but we can all benefit from studying the way he’s willing to talk about them.  Each of us, when faced with the unique circumstances of our own dying time, is going to have equally difficult choices to make, and simply knowing how to talk about them with our doctors and loved ones will make them far easier for everyone to navigate.

copyright Dia Osborn 2011