The Myth Of “Saving” Lives

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The Raising of Lazarus by Rembrandt

This post has been sitting in my drafts folder (i.e. the tomb) for months because I worked on it too long the first day, evening caught me unawares, and the basic idea suddenly turned stupid.  (My posts are like vampire victims.  Sunset frees my inner critic to suck the blood out of ’em.)

But then a few days ago I came across the following article, Faulty Rhetoric: ‘Save a Life’, written by a real doctor and voila!  My idea sat up in its coffin.  The blood is back, my friends.

Let’s see if I can finish before nightfall this time.  EDITOR

The myth that modern medicine can “save” lives is a primal myth, an archetypal one.

If there was ever a contest to pick the One Medical Myth To Rule Them All, I’d put my money on this puppy because its seductive, prolific, tenacious little tentacles reach into almost every corner of medicine.  The belief that we can save lives is arguably the basis of our entire modern health care system and therefore the majority share of our economy, too.

And yet it’s not true.  (Hence, the myth part.)  It’s based on…well, denial of course.  But also a verbal trick so simple that you’ll laugh when you hear it…or cry, or dismiss it as stupid and irrelevant…but here’s the gig:

To create this myth all you have to do is substitute the phrase “we can save lives” for the phrase “we can extend lives” and poof!  Instant, just-add-water myth. One tiny word change and we humans now wield power over death itself instead of just (some, a little, not very much) power over time.  We don our godhood.

Pretty nifty, no?

The truth is, of course, that nobody can save any life from death.  No one survives permanently.  All we can ever do is…maybe, hopefully…buy ourselves some extra time.

(And I am NOT knocking time here.  If you have something meaningful to do with it every second is sweet, not to mention that occasionally the amount of time purchased is substantial, like years or decades or even, in the case of children, an entire life’s worth.  No.  All I’m saying is that, in the end, a “saved” life dies just like an unsaved one does.  Death is never defeated, just delayed.)

Well…so fucking what? you may be asking and thank you if you are.  That’s a very important question.

The problem doesn’t lie on the individual level.  It’s not inherently bad for a person to hope for delivery from death.  In fact, in the short-term it can help.  Denial is a powerful and effective coping mechanism applied wisely.  It really, truly is.

The harm comes in when our collective, societal focus (and the lion’s share of our national resources) shift en masse from managing time wisely to trying to “save lives” and defeat death completely.  Chaos and tragedy are bound to ensue.  It’s like a bunch of people flying in a plane who yell screw the landing strip, Henry! and cheer the pilot on as he tries to stay aloft indefinitely.

Get where I’m going?  Anyone else having visions of an airliner full of screaming people plunging out of the sky to explode in a gigantic ball of fire when it hits?  Anyone else worried about what it might fall on?  (Anyone see parallels with our current healthcare system?)

In life, as in flight, it’s absolutely critical to always keep one’s final destination in mind because ultimately, most people don’t want to live just for the sake of being alive anymore than they want to fly just for the sake of being up in the air.  They want to use both to experience something more…companionship, family, travel, learning, laughing, growing, adventuring, building, loving one another…something.

So what is most likely to provide the highest quality time (rather than escape from death)?

Would it be to walk into a doctor’s office and beg, Save me Doc!  Save me!  I don’t want to die!

Or would it be to sit down and calmly, realistically say, Okay Doc. Before we talk treatments, you need to know a couple things.  1) How I’d like to live whatever time I have left and, 2) how I’d ultimately like to die…peaceful, complete, surrounded, and loved.  Not strapped to a gurney, blue, and bankrupt with my loved ones traumatized for life.  Now.  Is there a treatment ticket I can purchase that will buy me some meaningful time but still eventually wind up on THAT landing strip?

Of course for conversation that to happen, we each have to first figure out how we’d most like to live and die, because that’s something no doctor…however good, however wise…can tell us.  But figuring that out is also how we finally start to grow up in this new medical paradigm we’ve all created together.   And it’s the only way any of us will ever learn to navigate its labyrinth successfully, harnessing the miraculous benefits it offers while avoiding the substantial harms it can inflict.

And (looks at the watch quick) I’m…done!  With five hours of light still left.  Well done, me.

copyright Dia Osborn 2013

 

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Last Week’s Poll and Do Children Know When They’re Dying?

First of all, the answer to the question posed in the previous post’s poll is Shit.  Feels a little anti-climactic now, no?  Although I assure you, at the time when I first spoke it aloud, the word was volcanic.  As the most forbidden term in my universe, lettin’ her rip like that tore a hole in the time/space continuum of my life that has never entirely closed again.

Such is the power of language.

And now, for a dramatic subject change (place hands firmly on each side and hold onto heads please) I ran across an interesting article after Googling the search term “do children know when they’re going to die.”  The title of the piece is When A Child Is Dying and it’s written by a couple of M.D.’s working in children’s palliative care over at the Children’s Hospital of Wisconsin.

As one would expect with this topic, it’s a powerful, heartbreaking, and inspiring article, discussing both the keen awareness children tend to have of what’s really going on, as well as the higher stakes and corresponding desperation that so often comes to bear on adult decision making in these situations.  Obviously, the two doctors who wrote the article are strong advocates for delivering better palliative care in cases where children are at end-stage, but evidently it can be an uphill battle as quality-of-life issues for the child vie with the powerful parental instinct to fight for life.

Read it if you dare.  It highlights yet another area where 1) our collective commitment to denial about death can wreak some serious havoc if we don’t get out in front of it early, and 2) the huge and beautiful difference it can make for those we love most if we only screw up our courage and face it anyway.

One of the most helpful insights I gained while working with hospice had to do with a rather large, unexamined assumption I’d been laboring under most of my life; namely, that dying = something going wrong.  (Not surprising considering that most of our medical language reinforces the perspective.  Heart failure.  Organ collapse.  Failure to thrive.  Losing the battle.  Disease is the enemy.  War on cancer, etc.)

However, after hanging around with the dying for a while and studying the dynamics first hand, a new and startling perspective presented itself and knocked my world off-tilt.  I’m not entirely sure how it happened but as I watched one person after another…one circle of loved ones after another…migrate across the sweeping terrain of the dying season, the basic, cyclical nature of life began to show itself more clearly, and as it did the word “wrong” was gradually replaced with something else.

What was happening to these people wasn’t wrong so much as it was just time.  Their time.  Like someday it will be my time.  And your time.  And everyone’s time.  (And every thing’s time for that matter.  Nothing lasts forever in a physical world.)   And as this new awareness grew on me I turned to the obvious, bewildering question: why in the world had I been believing, however subconsciously, that people shouldn’t die?  Or that there was something wrong happening when they did?  Where did that expectation come from anyway?

I quickly realized it’s because of how it feels–because of the huge losses involved and the devastating hole it tends to leave behind.  Nine times out of ten, dying is a seriously hard physiological process to go through, and trying to recover after losing someone you love isn’t much better.  The whole thing feels bad.  Really bad.  And because nobody wants to feel that way, it’s easy to mistake the badness of the feeling for something going wrong.

I admit, it sounds really strange to say that Yes, absolutely, dying is horrible and undignified and primal and full of suffering and loss and destruction…but hey!  At least nothing’s going wrong.  

It sounds insane and yet it’s true.  Life is so weird sometimes.

But even accepting all that, it feels most wrong when a child dies.  It just does.  That magnitude of loss violates every screaming, primal, dangerous, protective, cornered instinct lacing our genes and honestly, I’m not sure if a rational perspective has any value at that point.  Does it?  I’m pretty sure I’d rip the throat out of anyone who tried to tell me nothing was going wrong if it was my child dying.

And yet…and yet.  That doesn’t mean it’s not still true.  Hmmm.  Y’know, I think ultimately…if I was going through the loss of a child myself…I would rather be surrounded by people who accepted the inevitability of dying, were no longer afraid of it, and had learned how to navigate it gracefully.  It seems like they’d be the ones most likely to offer the compassion, strength, and acceptance needed, rather than feeling conflicted, not knowing what to do, and turning their faces away in horror or outrage instead.

I guess that’s why stories like the one in When A Child Is Dying move me the way they do.  I LOVE that these people are out there; the doctors and nurses and volunteers and social workers and chaplains and counselors and all the other staff working in palliative and hospice care, all trying to oh-so-gingerly raise our awareness in order to try and lift some of our burden.  I’m grateful that they continue to wade willingly and skillfully into the darker waters of our lives every day.

They know that dying can be something better than most people currently believe.

copyright Dia Osborn 2012

How Thinking About Dying Is Helping Me Navigate Life

Rudder

This week I got a surprise dividend from all the time I’ve spent thinking about;

1) how I’d like to die, and

2) how to explain it to a loved one making choices for me.

But in order to explain the dividend I have to go back to the beginning of the year.

As I relayed in False Positives Are The Tenth Circle of Hell, starting in January the hubster and I endured four stressful months of an unnecessary prostate cancer scare.  What I didn’t mention in that post was that, during Month Three of this ordeal, I went in for my first mammogram in eight years and afterwards received a call back informing me that I needed to come in for further scans.  The radiologist had questions and wanted a second look.

I felt like I’d just been slugged.  I was already grappling with the onset of a depressive episode because of the fear and uncertainty surrounding the hubster’s prostate scare and I quickly realized there was no way I could simultaneously navigate the stress of a second scare without going down for the count.  I decided to postpone dealing with mine until I found out what was going on with the hubster’s.

Which was easier said than done.  The aggressive barrage of phone calls and letters that followed pressuring reminding me to schedule an appointment for further treatment only pressed me deeper toward the depressive episode I was fighting to stay out of.  (What’s up with that anyway?  People with real cancer don’t get that level of follow-up.)

Finally, we received the news that in spite of an elevated PSA, the hubster’s prostate was actually perfectly healthy.  The last four months were “just” a scare.  As I described in my post about the incident at the time, I didn’t feel relieved.  I felt conned.  Not by any of the people we dealt with…everyone was genuinely concerned and trying to help…but rather by a system that had gone horribly wrong for us.

Clearly, I needed to understand how it went wrong so I could navigate my own health scare differently.  I started researching.  What I discovered dismayed me.  First, I learned that the PSA test isn’t even FDA-approved for cancer screening, and the fact that it’s been widely deployed for that purpose has been the subject of controversy for over twenty years.  The jury is still out on whether the benefits of mass testing justify the resulting high rates of over-diagnosis, false positives, and over-treatment.

Then I moved on to mammograms and found some equally disturbing news.  Mammography neither prevents nor cures breast cancer and, while there does seem to be a modest benefit in decreasing mortality, the length of time screening actually extends lives has yet to be determined. Yet estimates for false positives run anywhere from a conservative 60% to a radical 90% of all callbacks, and some say over-diagnosis of breast cancers that would have regressed on their own may run as high as one in three.  Over-treatment is rife.  But the harm caused by all this is only just beginning to be studied.

Now, there are a lot of people who feel that if even one life is saved by all this over-doing, then any harm it causes is worth it.  And I really appreciate the fact that they value life that highly.  Because I do, too.

However, being one of the harmed myself now, I can’t help but feel some reluctance to continue the project.  While I’d dearly love to help save that one life, too, I can’t afford a descent into depression every time the system makes one of these frequent mistakes.

So with all this on my mind, for the last six months I’ve been considering what other course I could chart for myself; researching, sifting, weighing, and waiting for the voices battling in my head to reach some kind of consensus. On the one shoulder I’ve had all the aggressively pro-mammogram voices screaming, Go for the call back, woman! You could die! You could DIE!!  While on the other shoulder I’ve had my own voice warning, Careful Dia. You could easily slide into a depressive episode here that you can’t climb back out of.

(BTW, for those of you who asked what I meant by exercises for developing emotional endurance, this is an example.  I had to sit and hold hands with some incredibly uncomfortable, even frightening emotions while waiting for my eventual answer to put in an appearance.)

Then this week, I suddenly remembered a choice I made seven or eight years ago about dying that immediately and completely put all the voices to rest.  In her book Talking About Death Won’t Kill You (great title, no?) Virginia Morris offered a question to use when trying to talk to elderly parents about end-of-life choices.  She suggested we ask them:

If something happens and I wind up having to make medical choices for you, would you rather I erred on the side of doing too little or doing too much?

First let me say, this question is worth its wait in gold.  I kid you not.  I’ve posed it to a lot of different people over the years and the answers I received have frequently surprised me. I think this one question alone could save a boatload of suffering, if everyone only knew and asked it.

But back to what my own personal answer would be if I was asked, the instant I heard the question it was a no-brainer.  If anyone ever asked me, I’d tell them to definitely err on the side of doing too little.  Always.  I’m just not wired for the game of brinksmanship involved in trying to grab as many extra moments as possible at the risk of getting hopelessly entangled in the medical interventions that make them possible.  While that kind of extra time is worth the risk for some (particularly those with small children or other dependents who still need them) at this point in my life it certainly isn’t worth it to me.

It’ll be enough for those who love me to know that I have no qualms about giving up extra time…years if necessary…if it means being able to live a full and vibrant life, journey through a meaningful dying time, and then die a peaceful, simple death at home surrounded by people that I love.

So.  What does this understanding I’ve come to about the end of my life have to do with the current choice I’m facing in the middle of it?  Well, as you’ve probably figured out by now, it’s essentially the same question, only in a different situation.

Faced with a questionable mammogram but high rates of false positives, would I rather err on the side of doing too little or doing too much?

And as soon as I realized what the real question was, I immediately knew the answer.  I’ll choose for the least medical intervention possible, because that’s who I am.  It’s actually the same choice I’ve been making my whole life, only without realizing it.  Clearly, it’s the one I’m most comfortable with.  

It’s why I gave birth to both kids at home and navigated two decades of depression without antidepressants.  It’s why, when dealing with any illness or injury, I start with the least invasive treatment first and then work my way up from there.  It’s why I’ve spent so much time exploring less-invasive forms of medicine to supplement my use of modern medicine.  And I think it may even be part of the reason why I was so drawn to work with hospice; because it’s the way to die that usually involves the least amount of intervention.

The whole realization was kind of blinding.  I mean sure, I’d been hoping for some kind of resolution but I certainly wasn’t expecting an answer that big.  Suddenly my entire life, as well as a huge chunk of medical decisions I’m going to have to make going forward, just got a lot simpler.  And why?  Because of something I learned about myself while considering how I want to die of all things.

That’s the surprise dividend I mentioned.  Not bad, eh?

So what will I do about the current situation going forward?  Well, I’ll practice weekly home breast exams and watchful waiting until my next check-up in December.  Then I’ll discuss the whole thing with my doctor and get his input on where to go next.

And then (this is unrelated but something I’m kind of excited about)…if he’ll let me…I’d like to initiate our first conversation about how I want to eventually die a good death and see if I can get him on board with talking about the whole idea.  (I don’t think it’ll be a big leap.  Dying is totally the topic on the table as soon as you start talking cancer screening.)  I like Dr. R.  He’s a nice guy and a good doctor and if he’d be my primary till the day I died, I’d be happy.  We’ll have to see if I scare him off though.  I’ve never done this before and don’t really know what that kind of conversation is supposed to look like, but still.  There’s no time like the present to try, y’know?

copyright Dia Osborn 2011

Update:  10/10/11  Looks like I’m not the only questioning  what’s going on.  New recommendations are being mulled over for PSA tests.  See following article for details.

PSA Exams Should End in Men Without Cancer Symptoms, Panel Says: 

A draft report, released today by the Health and Human Services Department’s Preventive Services Task Force, recommends against so-called PSA tests for men who don’t have symptoms that are “highly suspicious for prostate cancer.”

Jack Kevorkian: The Elephant Is Still In The Room

Jacob “Jack” Kevorkian

May 26, 1928– June 3, 2011

Jack Kevorkian, the outspoken, determined, abrasive champion of physician-assisted suicide died last Friday in a Detroit area hospital.  He was 83 years old and died of natural causes.  He took on one of the most thankless jobs around…trying to get people to actually talk-and-do something constructive about how we die.  I’d like to sincerely honor him for his efforts in that direction, however controversial his methods, as well as wish him a smoother journey going forward than he had while he was here.

May you rest in peace, Dr. Kavorkian.  Thanks for having the courage to try and do something.  You were braver than most.

The tone of the articles I’ve read so far is all over the map.  A few roundly condemn him,  a few unapologetically celebrate him, most fall somewhere in between.  And I guess that’s appropriate considering the terrifying nature of the subject he tried to force the American public to face and address.  This quote from The New York Times article summed it up best for me:

 But Jack Lessenberry, a prominent Michigan journalist who closely covered Dr. Kevorkian’s one-man campaign, said: “Jack Kevorkian, faults and all, was a major force for good in this society. He forced us to pay attention to one of the biggest elephants in society’s living room: the fact that today vast numbers of people are alive who would rather be dead, who have lives not worth living.”

(Well, I’m not sure about vast numbers, but certainly more than there should be.)

Personally?  I admire the man for his bulldog tenacity in trying to make us look at how we treat those who are dying.  Back in the 90’s the terminally ill were holding the very shortest of straws, and really, somebody had to stand up and fight for them.  Kudos to Jack for being willing to put the target on his back.

But as far as his solution of physician-assisted suicide is concerned, I tend to lean more towards the view of Ira Byock, the Director of Palliative Medicine at Dartmouth–Hitchcock Medical Center and one of the most powerful voices out there calling for more aggressive care of the terminally ill.  In a 1994 paper he said that, while Kevorkian addressed the right problem, he proposed the wrong solution:

The problem is that of unmet suffering – indeed, unaddressed suffering – among many of the terminally ill in this country. Kevorkian deserves credit for loudly calling attention to this situation in a manner that the public – and the medical profession – finally can no longer avoid.

…This regrettable frequency of uncontrolled symptoms exists because of a critical deficiency of medical education as well as a lack of commitment on the part of established medicine to do whatever is necessary to alleviate the distress of the dying. The requisite knowledge, medicines, techniques and technology exist; they are simply not being applied. Physicians who do not aggressively respond to anguish among their dying patients deserve the sternest professional sanctions.

I think that the main thing Dr. Kavorkian was fighting for, access to a humane death, has been accomplished with the advances we’ve seen in hospice and palliative care in the last couple of decades.  In hospice care there are already established protocols in place that allow the possibility of medicating a dying person enough to successfully control their pain and suffering, even if it involves death as a possible outcome.  (That’s a whole other blog post that I’ll tackle soon.) For now, the biggest problem I see is that the majority of people still aren’t using hospice and palliative care services anywhere near enough.

To address this problem I’d like to see more aggressive steps taken to:

1) see that both hospice and palliative care services are made more universally available,

2) get more doctors to recommend their use earlier in the process, and

3) educate the general population on what hospice and palliative care really do so they’ll more readily turn to them when the appropriate time comes.

The conversation about dying in this country has come light years since Jack Kavorkian first forced us to start talking, but overall the topic remains an elephant looming large and untended in the room.

Personally, the idea of legalizing assisted-suicide makes me a little nervous.  It’s not a moral issue for me, it’s a social one.  As David Callahan mentions in The Troubled Dream of Life, we already have three other ways we get to legally kill one another (war, capital punishment, and self-defense) and for all our sakes, I’d rather be shrinking than growing this list.  Social fabrics are fragile under the best of circumstances.  I can’t help but feel it would be wise to proceed with caution and have a much more open, reasonable, and in-depth public conversation before we decide.

copyright Dia Osborn 2011

related articles:

Jack Kavorkian Dies at 83, Slate Magazine

Letting Go, The New Yorker

False Positives Are The Tenth Circle of Hell

image from Dante’s Inferno by Giovanni Stradano

Four months of hell are officially over and I guess the news is good:  the hubster does NOT have prostate cancer.  Hooray.  Of course he never had it to begin with.  This whole, horrible journey has just been one big, fat, fake-out from the word go.   He didn’t have prostate cancer when December’s PSA number came back elevated, he didn’t have it through the roller coaster of doctor appointments, advanced testing, and useless treatments to rule-out-other-causes that followed, and he didn’t have it when they did the biopsy last week.

Nope.  The news is just great.  And it only cost us a horrible first week of initial shock and icy paralysis, four more months of chronic, low grade anxiety and fear, an early nuclear blast of antibiotics that temporarily wiped out his entire immune system whereupon a subsequent cold turned into a bad chest infection with a resulting week missed from work, a painful biopsy with risk of infection accompanied by yet another nuclear blast of antibiotics, additional missed work time for all the appointments and phone calls, a great big round of terror for his parents, a few thousand dollars from our savings, and a medium-grade case of post traumatic stress disorder for me.

(And now the doctor wants him to go on a prostate drug for the rest of his life and we’re looking at a much higher risk for future false positives.  Oh boy.  Maybe, we’ll get to do this every year.)

Honestly?  I’m not sure what to think about everything we just went through.  I feel battered and numb.  I don’t even feel grateful that the news was good because it was never bad to begin with.  Somehow it feels more like we were duped.

Look, I understand the thinking behind preventive screening and yes, certainly, I agree there’s some profound value hidden somewhere in this monster of a system we’ve created.  But I also know there’s something really, really wrong with what just happened to us.  Really wrong.  I’m not clear yet on what that is exactly, and I’m not sure how the hubster and I should change our approach with prevention going forward to decrease the chance that it will happen again.  But I do know this:

1) the U.S. has the highest rate of medical over-treatment in the world,

2) there’s broad concern about the kind of detrimental side effects from false positives like we just experienced (here’s another example affecting newborns), and

3) the science on the actual effectiveness of various screenings is still evolving which means, to a certain extent, we’re all playing the role of guinea pigs.

My instincts are screaming that the system is laced with way too much fear…far more than the situation warrants…and this fear is interfering with our group common sense.  It’s not that cancer and heart disease aren’t real threats, but this frantic, escalating fight to avoid them is eating up ever-increasing amounts of the perfectly-healthy-and-okay part of our lives.

You know what this whole thing reminds me of?  The ever-fabulous Robert Preston playing a slick, handsome, traveling salesman in  The Music Man.  Harold Hill, the con man, rolls into town one day convincing everyone they have a serious problem and he has the only solution.  He seizes on a common, reasonable parental fear and blows it up into a looming monster threatening to engulf the entire town until, predictably, everyone buys whatever it is he’s selling.

I’m not sure who exactly is playing the role of Music Man in this whole prevention/screening/false positives/over-treatment monster we’ve created, but I sure do feel like the hubster and I bit the hook.

Anyway, on a lighter note here’s a Youtube clip of Bob singing “Ya Got Trouble” in the movie.  (It’s a classic and SO much fun!)  Watch how the townspeople fall for his spiel, hook, line and sinker.  Who can blame them?  Call me a sucker but I’d buy anything from this guy.  My father-in-law (a life-long, very successful salesman for IBM) calls this the best sales training video of all time.   The first nine seconds of the clip are sort of dark but it clears up after that.  Enjoy!        

copyright Dia Osborn 2011

Update:  10/10/11  Looks like I’m not the only questioning  what’s going on.  New recommendations are being prepared.  See following article for details.

PSA Exams Should End in Men Without Cancer Symptoms, Panel Says: 

A draft report, released today by the Health and Human Services Department’s Preventive Services Task Force, recommends against so-called PSA tests for men who don’t have symptoms that are “highly suspicious for prostate cancer.”

The Death Panel Two-Step

image from Wikipedia

Remember all the hue and cry about “Death Panels” last year?  Recall how powerful the fear was that it invoked, and how the outcry wound up blocking legislation aimed at reimbursing doctors for the time required to provide patients with information regarding end-of-life care?

Well, where legislation failed, it looks like regulation will prevail.  The New York Times carried a front page article a couple days ago leaking news that under new Medicare regulation, starting on January 1, 2011, doctors will now be reimbursed for the time required to provide patients with adequate counseling for end-of-life care planning.

“The final version of the health care legislation, signed into law by President Obama in March, authorized Medicare coverage of yearly physical examinations, or wellness visits. The new rule says Medicare will cover “voluntary advance care planning,” to discuss end-of-life treatment, as part of the annual visit.

Under the rule, doctors can provide information to patients on how to prepare an “advance directive,” stating how aggressively they wish to be treated if they are so sick that they cannot make health care decisions for themselves.”

As some of you may remember, I wrote about this subject a while ago in Christmas Trees and Death Panels:  How Fear Sets A Snare.   Back then, I was disappointed but not terribly surprised that this legislation failed because it’s nigh-on impossible to legislate something that no one will even discuss.  As someone who worked for six years with hospice and who strongly advocates for end-of-life care conversations, I’m certainly glad it finally passed.

But my reaction is hardly all leaping  joy and ribbon waving.

On the one hand, I’m profoundly relieved that one of the major roadblocks to physician/patient discussions about end-of-life care is now removed.  Even though this policy doesn’t address the real elephant in the room…the fact that most doctors are clueless about how to have that particular discussion with a patient…it at least now provides a financial incentive for them to face into all their deepest fears about death and dying and try to learn how to talk about it.

And I believe that’s a good policy.  To explain why, I’ll refer once again to the decades long experiment in La Crosse, Wisconsin where doctors have been having regular end-of-life care conversations with their patients since the mid-1980’s.  I’m not exaggerating when I say that this one, simple  practice has made the quality of dying in La Crosse  among the most benign, respectful, compassionate, comfortable, and enlightened in the nation.

Having said all that however, I’m still bummed at the stealth used to get this policy instated.

“While we are very happy with the result, we won’t be shouting it from the rooftops because we aren’t out of the woods yet,” Mr. Blumenauer’s office said in an e-mail in early November to people working with him on the issue. “This regulation could be modified or reversed, especially if Republican leaders try to use this small provision to perpetuate the ‘death panel’ myth.”…

The e-mail continued: “Thus far, it seems that no press or blogs have discovered it, but we will be keeping a close watch and may be calling on you if we need a rapid, targeted response. The longer this goes unnoticed, the better our chances of keeping it.

So why does this kind of behind-the-scenes maneuvering dismay me?  Because it’s going to make having an open, constructive, educational, illuminating, respectful, national conversation about dying even harder than it already was.  (I didn’t know that was even possible.) Far from building any kind of consensus or trust, or making an attempt to listen to or address some of the real fears feeding into the Death Panels uproar, it instead seems to confirm one of the deep fears a lot of people already have about linking how we die with big government: namely, that those in power don’t really care about the concerns or desires of everyone they govern, but are only intent on imposing laws that they believe are best for everyone.

Overall, I rate this new regulation as basically two steps forward for health care policy, and one step back for public discussion and trust.

Sigh.

I foresee, with my magic crystal ball, that setting public policy around dying is going to continue to be a tough dance for everyone to learn.

copyright 2011 Dia Osborn

Update: Snoring Dog Studio expressed some confusion in the comment section as to what part of this regulation I was objecting to.  Great question.  It made me realize I didn’t reference something important that was said later in the article.  I have now included the pertinent quote.  Thanks Snoring Dog!  




Why The Disabled Are Worried About It

In last Friday’s post I mentioned that, much to my surprise, the disabled seem to have good reason for worrying about assisted dying/assisted suicide (I’m going to shorten it to AD/AS here…) legislation being passed.  In this post I’d like to take a look at why.

It started with the whole Death Panels phenomenon.  After I wrote  Christmas Trees and Death Panels: How Fear Sets A Snare a few weeks ago, a thought kept nagging at me.  When Sarah Palin first threw out that now infamous term, she claimed that the government was planning to set up medical boards to decide whether her child with Down Syndrome would be allowed to live or not.  I initially thought it was a (pretty brilliant) piece of political misdirection and dismissed it.  (Admittedly, my opinion of politicians is at an all time low.  The bias runs deep.  If their lips are moving, I doubt it.)  Nonetheless, the claim reminded me of different accounts I’ve read over the years of the historical treatment of the physically disabled and mentally ill, and as I recalled some of those horror stories I began to wonder if there might not still be some deep psychic scars hanging around in our group subconscious.  It wouldn’t be unusual.  Deep fears based in old realities do tend to die slowly.  Could some element of genuine fear also be coloring Ms. Palin’s political ploys?  And was it an echo of that same fear that inspired such an overwhelming response in the American public?

(Who would have thought that my old fascination with mental asylums, body snatching, and medical experimentation on the terminally ill might eventually offer constructive insight into the deep, subconscious fears about disability and dying that are still active today?  Go figure.  Let that be a lesson to follow one’s passion, however odd it seems. )

In terms of their treatment at the hands of a larger society, historically the disabled have often drawn the short, shorter, and shortest straws.  Some of the accounts are heinous.  For example, in the Victorian era, in the early days of asylums and workhouses the disabled (both physically and mentally) were often segregated and abandoned in abysmal conditions; shackled in dungeons with no light, clothing, beds, or heat,  and left to languish in their own filth. In addition, because there was no meaningful legal protection, they were sometimes targeted for questionable medical experimentation by unscrupulous doctors.  Not to mention that, when it came to committing someone for mental illness, the definition of insanity was…well…insane.  Families could commit just about anyone to an asylum for reasons as simple as disobedience (in women) and unruliness (in children.)

It was a traumatic age to rank among society’s most vulnerable and, while conditions have improved dramatically in the western world over the last century (not always so rosy yet in pockets of the developing world though,) the old horror stories have nonetheless carried forward to today.  There are still families handing down tales of not-so-distant ancestors who were locked up in these places, and who doesn’t get a delicious chill running down their spine at the use of old asylums as settings in classic, horror movies?

Kings Park Psychiatric Center, New York (Building 93)

These stories from bygone days are still lurking deep in our group unconscious and contributing to the fear and stereotypes about disability and its treatment that exist today.   But up until recently I assumed those fears were dated and irrelevant.  Imagine my surprise then, to discover there are still compelling reasons for the disabled to not only fear segregation and discrimination, but possibly euthanasia as well.

After assuming that Ms. Palin’s stated fear for her son was not entirely political, I dug a little deeper.  I did a quick search using terms like disabled, fear, and assisted suicide and found this publication put out by RADAR: The Disability Network in the U.K.  It  addresses concerns about proposed legislation for assisted dying in the terminally ill and…please, let me first just say that in a media world as full of hype, spin, and misrepresentation of the facts as ours is currently, this little bulletin is a treasure.  It’s heartfelt and passionate, but still somehow manages to be respectful, and I read it a few times just to bask in that little miracle of miracles.

But aside from that, one piece of information I learned there shocked me.  It turns out the disabled have a right to worry about legislation sanctioning AD/AS.

Included in RADAR’s publication is a case study concerning a woman named Jane Campbell, diagnosed at birth with spinal muscular atrophy and not expected to survive her first year.  Best I can figure, at the time of this publication she was about forty and, in spite of extensive disability, living a dynamic, happy, satisfying life as a national advocate for the disabled.  However, during a hospitalization for severe pneumonia in 2003 she encountered an unconscious stereotype held by members of the medical staff that could potentially have proven fatal to her.  Her experience is important because it crystallizes some of the very real danger that AD/AS poses for the disabled, and I think it’s something that all of us healthy, strapping people need to consider carefully.

Evidently, while in the hospital she was approached by two different members of the medical staff overseeing her care who told her that, in the case of respiratory failure, they assumed she wouldn’t want to be resuscitated with a ventilator.  She was at first surprised, and then alarmed, because they didn’t seem to believe her when she insisted that, no, she wanted to continue to live very much, even on a ventilator.  Her husband eventually had to race home and collect photos and other factual evidence to convince them that in spite of her disability, she did indeed enjoy a very high quality of life.  Unlike an equally young but non-disabled patient, Jane found herself in the position of needing to prove that she still had every reason to want to live.

I imagine it was terrifying for her.  Medical personnel often have to make tough calls that influence whether a patient will survive a crisis, and if they believe that the patient doesn’t want to survive it will almost certainly influence their decisions.  Jane was confronted with medical professionals who, because of unexamined stereotypes about her quality of life, automatically assumed that she’d prefer to die.  More frightening for her was the fact that these stereotypes acted upon them so powerfully they continued to doubt her, even after she initially told them it wasn’t true.

Now some might suspect Jane was projecting her own fears onto the staff.  I might have too, except that I instantly recognized the kind of situation described because I was in it once myself, only I was on the medical side.  When Maggie, a woman who’d been left as a quadriplegic by polio sixty years earlier, was first referred to our hospice with terminal cancer, I was laboring under the same flawed assumption that she must be relieved.  When I first entered her home I thought surely she must be looking forward to her long suffering coming to an end.

Nothing could have been farther from the truth.

I found a woman devastated by the news.  She loved her life and for good reason.  Surrounded by a devoted, supportive husband, children she loved, grandchildren she adored, and a wide network of extended family and friends, she had at various times produced an educational TV show and managed a branch of the state tax commission for more than a decade.  She was sharp, beautiful, disciplined, optimistic, graceful, and dynamic…and she was not, I repeat not, ready to die.

It was a real eye opener for me.  The reason stereotypes are so damn successful is because, without any real life experience to refute them, they feel true.  It isn’t until one finally runs aground on the rocks of some contrary evidence that they crack open, revealing the blind assumptions they’re based on and allowing us to finally begin to question them.  Maggie was the rock that split my hull.  She was severely disabled but, where her desire to live was concerned, that was totally irrelevant.  While her husband told me after she died that of course she was relieved to escape the limitations placed on her body, that in no way translated into meaning that she wanted to die. Evidently, wanting to be free of a disability and wanting to be free of  life are not the same thing.

Go figure.

Now, an important question to ask is, does any of this really matter to those of us who are not disabled?  Clearly, this stereotype is potentially dangerous for someone who is but for someone who’s not, other than arousing our deep humanitarian instincts, is it pertinent?  Will it ever affect us?  Do we have any skin in this game?

You bet.

Here’s an important point to keep in mind; eventually anyone who doesn’t die instantly is going to experience what it’s like to be disabled. Because the dying are a subset of the disabled. When we begin our final journey we all enter the world of steadily decreasing ability and, to varying degrees and for however long it lasts, we each get to feel what it’s like to become helpless, dependent, weakened, and vulnerable.  And when that happens all those non-pertinent stereotypes about disability flapping around are going to catch our scent and come circling, and you better believe they’ll influence the people making critical decisions for our lives.  It won’t matter which side of the AD/AS argument any one of us falls on, whether we’ll be among those who want to live but, like Jane and Maggie, are cared for by people who don’t believe us, or whether we’ll be among those who want to die but who are cared for by people who think we’re no longer competent to decide.  Either way, left unaddressed any stereotypes about disability will almost certainly wield power over our self sovereignty.

Now you might think that this alone is a good enough reason to look more closely at the actual wording of any given legislation for AD/AS, and to have some in-depth, follow-up discussion.  But Wait! (I say like an infomercial for a new, blender/chopper/shredder/slicer kitchen appliance that one just can’t live without…) There’s more!

But…it’ll have to wait until another post.  I’ve already gone way too long already.  Next Friday, I’d like to take a look at the possibility that the blind assumption the disabled don’t have any real quality of life may also be a prime factor influencing why some people choose assisted dying/assisted suicide in the first place.

copyright 2010 Dia Osborn

The Burden of Miraculous Choices

One of the strangest side effects of my years working with hospice was the collapse of my sense of belonging.  I had no idea beforehand, how much of my identity was tied up with the various beliefs I held and the different groups I identified with because of them.  National, ethnic, familial, political, economic, spiritual, you name it, I had come to define most of who I am by the ideals I held.

But then, as I entered homes filled with beautiful, vulnerable, dying people…who it just so happened believed in a wide variety of  things that were frequently different, even opposite, from my own…I made the unwelcome discovery that many of my ideals were actually fed by lurking, unconscious prejudices that lay, seeping and contaminated, just underneath.

I was naturally horrified.

One of my biggest prejudices was against the medical/industrial complex and especially the pharmaceutical branch.  (Please understand, my admission of a prejudice is not to say there isn’t a problem.  I’m not alone in my concerns about our over-prescription, over-use, and over-reliance on drugs.  A lot of thoughtful people, both in and out of the medical field, are worried about it.)

But for complex reasons, including a couple of personal encounters with disrespectful (and in one case unethical) doctors, I went beyond simple concern into deep prejudice.  I began to think badly of medical, pharmaceutical, and health insurance people as a whole.  I came to question not only their motives but their basic humanity.

I secretly began to suspect they were monsters.

But then one day I had this irresistible urge to work with the dying and as a result, actually entered into the medical/industrial complex as a participating member.  I joined a hospice, took a class, and became a nursing assistant.  I did my clinical hours in a nursing home.  Visited patients in hospitals.  Worked closely with nurses and doctors and even filled prescriptions at pharmacies, delivering them to the people I helped care for.  And lo and behold!  Somewhere along the line, in the gentle, surprising way that grace frequently delivers its gifts, I rediscovered the value, relief, and miracle that modern technological advances have to offer.

I discovered there aren’t really any monsters after all, just an odd amalgamation of deeply caring, deeply flawed human beings.

As a result of this journey, modern medical technology has taken on a slightly different cast for me.  Not so much a cold, uncaring, manipulative, disrespectful power that takes over our bodies and ignores our humanity, but an offering of something extraordinary, a possibility of the truly miraculous.

I had a patient once.  Maggie–dear, beautiful, polio stricken Maggie Full Of Grace–who wrote a little book about her sixty year journey with the disease and it’s after effects.   I read it after she died and in it I found the answer to a question I’d always wondered but never found the courage to ask her.  How did she feel to be one of the last to ever contract polio?  The vaccine was introduced two years later and the disease, for all intents and purposes, was eradicated.  Did she ever feel cheated?  Did she ever think Why me?  Why wasn’t it discovered two years sooner?

I found the answer in her book.  First, she described the terror she and her husband initially experienced in those earliest days, not for her but for their three small children, the fear that they might also contract the virus.  She’d been nursing her five-week old baby at onset so he was particularly exposed.  That description was then followed by this passage:

“One of the greatest blessings I would later thank God for is the presence of the vaccine, the fact that our children and grandchildren will never get polio.”

I started to cry when I read it.  It was as though she was still there whispering to me.  Still trying to answer the secret question, the real question, I so desperately needed to ask her.  She’d been powerless to stave off infection from the polio virus itself, but somehow she’d successfully fought off the bitterness and regret that so often follows in the wake of such trauma.  How?  In the face of decades of the resulting hardship and suffering,  how in the world did she protect her heart from that kind of collapse?

And somehow there the answer was, miraculously written down for me in her book.  Her love for her children and gratitude that they were spared served as her vaccine.   The power of those two emotions filled her heart with a kind of immunity that no bitterness, however real, however justified, could overcome.   It was something I’d always heard but somehow never really understood before, the simple difference between looking at a glass as half full rather than half empty.  Both realities are always true.  Both have an impact that must be absorbed and coped with.  But the choice of which one to cleave to is always ours, which one we’ll ultimately allow to fill our vision and heart.

I’d never understood before, how often I fill my own with emptiness.  No wonder I’ve struggled with so much sadness.

It was the people I met like Maggie Full Of Grace who started anchoring me back into an older place inside myself, turning me into a person far more tolerant and oblivious than I’d been before.  Over time things like politics and religious differences, economic backgrounds and cultural beliefs, all the myriad and ever-multiplying array of opinions that seemed to matter so freaking much beforehand just didn’t anymore.  Over time I became freer and happier and better and more loving…and increasingly confused by the change.

It was like climbing up to the peak of the very highest mountain in the middle of a vast wilderness where I could finally see forever and ever… but then the wind sucked the map out of my hands and blew it away.  The views were spectacular in a way that knocked me to my knees, sure, but how the hell was I ever gonna find my way back out?

(Don’t delete this photo again dammit…it’s my picture!)

How was I supposed to navigate without the instinctive bearings my prejudices gave me?  I’m still, five years later, struggling to figure that one out.

Maggie came forward in time sixty years to instruct me on the brutal, harsh reality of how it really was back then.  Watching her struggle every single day within her twisted, paralyzed body, hearing her stories of those long, painful, uncertain months in the polio hospital, of how many husbands abandoned their wives, how many crippled children were left behind and forgotten, all these things brought that world to life for me.  I finally got it, why the word, polio, used to strike such terror into the hearts of all who heard it.  Why Jonas Salk was such a hero and how the vaccine really was a miracle of deliverance.

Life before penicillin, immunizations, knowledge of basic hygiene, and the vast array of other developments and discoveries we have today was often cruel.  What we were forced to rely on instead back then was Adaptation with all its tools—the human qualities of creativity, determination, strength, patience, fortitude, and grace.  And now, today, we sit at the junction of these two ages, emerging from a period of helpless vulnerability when we were forced to cultivate our deepest, inner humanity just to cope and survive, and entering into an age of blossoming outer powers where we no longer have to simply grit our teeth, accept, and endure.

We’ve discovered a will, an intelligence, and an imagination within ourselves that can generate miracles…and the breakthrough is heady.  It’s created an insatiable hunger within us for more power, more knowledge, more salvation.  We now dream wild and intoxicating dreams of freedom from all disease, all aging, all pain, all suffering.

Even, perhaps, from death.

But I’ve watched a strange and disturbing thing happening as our outer powers increase.  It seems that our inner powers, the long-cultivated wisdom of our deepest humanity, seem to be diminishing as they lay, forgotten and misplaced in the hallways just outside of research labs and insurance offices and fear-filled waiting rooms.  The ancient tools that served us for thousands of years—things like courage, sacrifice, endurance, surrender, the ability to recognize and be grateful for all that we still have—are threatening to atrophy with a current wave of under-use.  And in their place things like fear, anger, blame, grasping, desperation, and bitterness frequently rise instead.

I have hope though.  I don’t think the current trends will last.  I suspect that we’re simply in the first flush of wild discovery and have yet to understand the limits, comprehend the costs, of pure, unbridled dreaming.  After eons of helpless suffering the pendulum is swinging wildly to the other extreme , but pendulums always swing back.   Someday we’ll remember that we can’t just eradicate things like suffering and death because to do so would also eradicate the great arc of wounding and joy that is life.

No.  I think we’ll eventually settle down, find some equilibrium, and begin the practical task of roping in our miracles, tethering and training them, instead of letting them stampede through our lives, trampling the older, extraordinary knowledge we’ve already developed.

Here’s hoping for a divine marriage between the two someday soon.  A day when our modern technology becomes firmly anchored in our ancient humanity, and when our collected wisdom is further deepened by the discoveries and miracles of today.

copyright 2010 Dia Osborn

Christmas Trees and Death Panels: How Fear Sets A Snare

(I apologize in advance.  This is a long post but there was a lot of important ground to cover.  I won’t do this often.  Promise.)

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!

Alf and the Fly Part I

Once upon a time there was a man named Alf who was dying.  Again.  He was dying before, a few times…at least that’s what the doctors said.  But it turned out they were mistaken and he wasn’t dying at all.  He was just living faintly from time to time.

Alf had lived with a diagnosis of congestive heart failure for twelve, long years and, somewhere in the middle of all that illness and decline, his heart got bored and figured out it could trick people into thinking he was dying.  His heart enjoyed tricking people.  It was like a coyote it was so tricky.  It liked to make the doctors think This is it! so they would then tell everyone else, including Alf, the news.  And that was when it would surprise them all by coming back strong and not dying after all.  It made his heart look like a hero.

That’s how I first met Alf.  His heart was at it again and, in spite of all the times it had tricked them in the past, everyone was certain this time was different.  So, as often happens when someone’s illness is declared terminal, hospice was called into the case.

I came into their lives as a home health aide and I spent hours and hours every week helping Alf and his wife, Mrs. Alf, with things like, oh…showers and transfers and household chores.  There was always cooking and cleaning and errands to do.  Help with personal hygiene and bathroom support.  I was the supply inventory-er and medication monitor as well as a critical all-around liaison with the rest of the hospice team and a jack of all trades for sure and certain.  In fact, so indispensable was I that they paid me an extortionate wage well down into the single digits, a sum that made me the envy of nobody in particular and the wonder of all those who knew how much I’d paid for my college education.

But I digress.

I worked with Alf for close to two years before everyone finally wised up and realized he wasn’t dying this time either.  But what a two-years it was!  We had a ball, Alf and I, and he taught me lots of wonderful things.  For instance, being a great one with his hands, we spent many happy hours together building bird houses which is when he taught me how to use a table saw.

Now if you’ve never seen a wobbling, wheelchair bound, mule-stubborn, ninety-three year old man who can barely pull himself upright to begin with, lean unsteadily on his elbows while using his bare hands to guide a tiny piece of wood past a twelve inch diameter, hot steel, spitting saw blade, then you just haven’t lived my friend.  Everything always turned out okay (miracle!) but each time afterwards I had visions of flying fingers and blood splatter dancing in my head.

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We also had a grand adventure at the local, home improvement warehouse where Alf wanted to race an electric shopping cart up and down the aisles at top speed.  He never got full control of the thing but he wasn’t a man to let a detail like that stop him–at least not as long as the other customers were willing to keep diving out of the way and store employees hadn’t figured out yet who was running into the shelves.  No sirree Bob.  Alf was beyond such mundane considerations.  Alf was magnificent.  Dirty looks and mumbled expletives weren’t nearly enough to dampen his wild elation at finally getting behind the wheel of something with a motor again.

All in all we had a great run.

But eventually, everyone figured out he wasn’t dying this time either and the gig was up.  He was discharged from hospice   and without the benefit of a daily schedule to throw us together, he and I slowly drifted apart.  I heard bits and pieces over the next couple of years about how he declined to the point where they finally had to put him in a nursing home, about how he just lay there curled up and incapacitated, unable to feed or dress or toilet himself anymore.  I couldn’t help but wonder why his heart wouldn’t just buck up and surrender like the rest of his body.  I shook my head at its foolishness.  Sometimes, being trickier than tricky can really work against you.

But the day finally came when Alf turned the tables on his heart.  He died peacefully in his sleep while it was off dozing, slipping out before it had a chance to wake up fully and figure out what was going on. His family was bewildered at first by the strange turn of events and understandably wary, which could be why they decided to have an open casket at the service

Just in case.

Alf’s was my first ever viewing.  I walked up to the front of the funeral parlor to look at him as soon as I arrived and, between you and me, I was feeling guilty as all hell because I hadn’t been to visit him in so long.  But the minute I saw him lying there in his Sunday suit, looking trim and dapper as ever, I felt better.  He was okay now, finally free of his tricky heart, and in the end that’s all that really mattered.

I leaned over the side of the casket to whisper an apology in his ear while at the same time laying my hand every-so-gently on his chest, but then nearly jerked it off again upon discovering he was ice cold and hard as a freaking rock.  The sensation startled me.  It felt like a frozen rack of ribs slipped into a coat and tie.  It took me a minute to get my head wrapped around the practical details of what’s required to keep a dead body looking fresh and presentable, and then promptly forgot all about it as I returned to bidding him a fond farewell, the best of luck, and a heartfelt wish for grace and fun on his journey to wherever he was headed next.

Thanks for everything, AlfReally.  It was an honor.

I made my way to a seat in the back row, took my place between our hospice’s Social Worker and Nurse, folded my hands primly in my lap, and settled in to try and behave myself during the service.

And that was when the Fly showed up.

Once again, this post has gotten a little too long (windbag?) and I’m gonna have to finish up next week.  Stay tuned.

copyright 2010 Dia Osborn

Alf and the Fly, Part II

When we left Alf last week he was lying in state at the front of the room while the rest of us sat politely listening to the pastor (who clearly never met his subject) reiterate the sterilized summary of his life as laid out in the obituary.  I was doing my level best to stay awake and fend off the head-bob when the Fly first started buzzing around me.

This was just one of a number of remarkable photographs published in The Daily Mail. It was taken by physiotherapist Miroslaw Swietek at around 3am in the forest next to his home.

I was surprised.  For one thing, it was hard to believe that something as wildish and chaotic as Musca domestica could survive in a place like that.  The room felt as sterile and life-sucking as the sermon currently bouncing off its stark, white walls.   Call me wrong but I’d have bet good money that anything smaller than, say, a finch or a bat would have died and dropped to the floor the instant it hit the atmosphere.  Equally amazing was the fact that the Fly (fat, hairy, and droning) had to negotiate five doors and a security force of germ-phobic staff to penetrate that far in.  Truly, this was one determined fly.

However, my wonder was soon replaced by consternation.  The Fly, after buzzing in circles above my head a few times, commenced a series of land-and-crawl maneuvers targeting places like the top of my head and the side of my face.  At first I just brushed it away while still maintaining my focus on the pastor, but after the third or fourth time The Fly finally had my undivided attention.  I studied the situation.  When I glanced at our Social Worker and Nurse on either side of me it was plain they were outside the fly zone.  Neither displayed the harassed look I was rapidly adopting.  And when I looked around at everyone else in the immediate vicinity I realized they weren’t being bothered either.

Naturally, this annoyed me.   So the next couple of times I swatted the creature towards the Nurse, to see if it would switch victims and crawl on her instead.  But it didn’t.  It not only came right back at me each time, it seemed to redouble its efforts.  That was when it struck me that, for some odd reason, the Fly seemed intent on making my life, and my life alone, miserable.

It got worse.  After a few swipes the thing started dodging my hand, feinting to one side in the air before diving back in to skip across my forehead, my cheek, my nose.  Or, if I swung after it had already landed and was doing the Tinkerbell dance across the back of my neck, it would leap into the air just long enough for me to slap myself before gracefully alighting again in a swift succession of tiny steps.

The Fly was really starting to get to me.

Yet it wasn’t until it began lifting my collar to crawl under my shirt and down my back that I truly began to panic.  What the hell was this thing?  It was like no other bug I’d encountered, intelligent, crafty, and motivated.  Like something out of a Jeff Goldblum movie.   I was right on the verge of making a full-blown scene, shrieking and jumping to my feet, writhing madly while trying to slap my back and tear off my shirt, when something stopped me.  I had the strangest thought.

Alf?

The Fly stopped in its tracks.  It stayed still for a moment, huddled there under the fabric between my shoulder blades, then turned around and crawled back up out of my shirt, lifted into the air, and began to fly around in front of my face in a figure eight pattern.  I couldn’t believe it.  My mind was spinning.  Just how is that kind of thing supposed to work?  My imagination took off and I wondered wildly whether Alf had temporarily turned into the Fly itself, or if he had just rigged a tiny, leather bridle and bit and was now sitting astride its back, grinning and waving at me with a cowboy hat.

It was at that point that the Alf Cloud descended.  I felt it wrap around me like something warm and soft, and then an image of him…smiling, standing with nary a wheelchair, walker, or cane in sight…exploded in my mind.  It felt like he was right there in the room.  I could almost smell the clean soap coming off him, feel something warm like body heat.  He was chuckling and I almost laughed out loud, too, but then remembered where I was.

It was odd and wonderful and such a relief.  He still felt exactly like Alf only without any of the weakness and strain.  No frustration, irritation, or pain.  He felt strong and easy and laughing, not at me but with me, like he knew that I of all people would appreciate this new-found freedom he’d found.  And I did.  I really did.  The last tattered remnants of sadness and guilt washed away and there was nothing left inside but happiness for him.

I grinned.  You rascal. And as soon as I said it, the Alf Cloud was gone.  The Fly stopped its circling and meandered away, bumping into people and chair backs and walls as it went.

I told our Social Worker about the experience on the way home and we shook our heads, wondered what it all meant, then chatted for a while about what we thought might happen when we died ourselves.  I told him I was hoping for a lot of love.  He said he’d be happy if he could still experience anything that felt like sex.

The next day when I arrived at the office our Social Worker had already been there for some time and was sitting at his desk when I walked in, studying a small fly crawling around near his coffee mug.  He glanced up at me and smiled.

I was just wondering, he said, then looked back down at the fly.

Mom?


copyright 2010 Dia Osborn