Odd Thing About Dying #1: They’ve blocked most of the exits.

Posted by Dia in Living and Dying and tagged with End-of-life care, Hospice, Living and Dying, medical paradigm, Oddities, palliative care, Talking about dying August 19, 2013

Oh, those Swedes.

I was thinking the other day about important things I learned while working with hospice (and by “important” I mean things like what surprised me to the happy upside, and what do I need to know to make a graceful exit when it’s my turn?) and a few things came up.

The first is a piece of information that falls under the Graceful Exit category and is, I think, pretty important. Perhaps even critical in the same way that knowing where the emergency exit doors are located on a plane can be critical. It goes something like this:

If the current medical system was a building that we’re supposed to enter at birth and leave at death, then there’s a serious flow problem because they’ve blocked most of the exits.

There’s basically only one official door left where people trying to get out are allowed to leave the building without a fight. (More on that below.)

No doubt about it, we’re living in an unusual age. Dying has become very hard to accomplish, which is weirdly wonderful until it’s actually time to die and then it totally, totally sucks. It wasn’t always like this. For roughly the last thousand years of Western civilization, people used to die according to a fairly simple formula:

a) They lived for a time.

b) They got really sick or severely injured.

c) They realized they’d never get better.

d) They summoned, reconciled, forgave, received forgiveness, and bequeathed.

e) Then they went ahead and died.

(Except for those who died suddenly and went straight from A to E. It’s interesting to note that while nowadays many feel that’s an ideal way to go, historically it was frowned upon. Dante for instance, relegated some of the souls that died unexpectedly to the lowest circle of hell which, I don’t know, seems a bit harsh. I’d be curious to know his thinking on that one, although he looks like a scary guy to argue with.)

This by Sandro Botticelli.

Due to some of our pretty extraordinary medical advances however, that ancient formula isn’t working so well anymore and while we’re still following the first two steps…

a) We live for a while.

b) Then we get really sick or severely injured.

…once we get to Step C things fall apart at the seams. Our bodies can now be kept alive almost indefinitely which has made it a lot harder, sometimes impossible, for people to either slip out without any fuss or at least figure out when it’s time to let go. I’m not exaggerating here. The bottleneck of bewildered, milling, hospital gowned people trailing IV poles and looking for a definitive answer has grown so massive that it’s threatening not only our healthcare system but our entire economy.

So why is this happening? Well there are actually a lot of reasons but I’m only going to address two of them here. The first is that, while modern medicine has a variety of goals, there’s a kind of One Goal To Rule Them All. Our current healthcare system has evolved around the central purpose of keeping everyone alive for as long as possible which, for the vast majority of our lives, is a good, noble, sacred thing, and one which I think we’re all pretty grateful for.

The problem arises when someone realizes that oh, it’s my time, so they gather their things and head for the nearest exit (these are the doors with signs overhead like Heart Attack, Pneumonia, Sepsis, Aneurysm, Dehydration, Flu, Respiratory Failure etc.) But there are guards on all these doors who turn them back with shock paddles, intubation, or offers of antibiotics, vaccinations, IVs, etc., sometimes over and over and over again. People trying to leave the building often have to spend a lot of time and money frantically going from door to door until they’re finally so frustrated that they just overpower the guards and escape anyway.

I read a recent story of an elderly gentleman with a heart condition who decided he’d lived a long enough/good enough life and was now ready to go. After much deliberation he decided to decline any further interventions and treatments, filled out an advance directive, got his wife and doctors all on board with his decision, and even signed a Do Not Resuscitate order.

Then he went golfing where he had a major heart attack somewhere around the seventh hole. Panicked bystanders called 911 which, unfortunately, activated the guards standing next to that particular door. The EMT’s sprang into action and once they arrived on the scene nothing could really stop them. (Please keep in mind that emergency responders are bound by some strict legal codes to preserve life and deliver it to the hospital.) Evidently, even the man’s advance-directive-bearing-wife couldn’t get them to stop (I wonder where the DNR was and if it would have made a difference?) and so our elderly gentleman had to endure the overwhelming pain and multiple broken ribs of CPR along with many other uncomfortable resuscitative efforts in both the ambulance and the emergency room before he finally died from his heart attack anyway, just far more broken, disheveled, and black and blue than if he’d been allowed to die back on the green. (And then his wife got the bill.)

Needless to say this was not how he wanted to exit the building. At all. Most people don’t want to leave this way. Nevertheless, this kind of situation happens over and over again because right now there’s still a sizable disconnect between emergency medical services and end of life care. (And preventive services and end of life care. And routine care and end of life care. And…well, pretty much the entire medical system and end of life care.) This kind of thing happens in nursing homes and assisted living facilities and hospitals, too, and everyone knows it’s a big problem. The good news is that solutions are currently being sought. The bad news is a lot of the problem is structural and hard to change. Even so I’m confident we’ll figure something out eventually.

So in the meantime, what’s a person who’s ready to go and wants to avoid extraordinary medical measures to do?

Well, this is where that One Official Exit I mentioned earlier comes in. You’ve probably already guessed by now but the sign over this door reads HOSPICE (and to a growing extent the up and coming PALLIATIVE CARE.) Just so you know, people who queue up at this door are hands down the most likely to have their passports stamped and passed right on through in a graceful, peaceful, unmolested way.

Sounds simple enough, no? I thought so too, but in reality this particular door, even though it’s the one that everyone respects and agrees on, is still the most misunderstood and underutilized exit of them all. Why?

Well, that brings me to the second reason why people tend to bottleneck in end-of-life care these days, but I don’t have room for it here so I’ll have to cover it in the next post:

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

copyright Dia Osborn 2013

“Maybe we need to redefine “Palliative Care.”

“Hospice Misunderstood by Patients, Providers Alike”

“Why MOST doctors like me would rather DIE than endure the pain of treatment we inflict on others for terminal diseases.”

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

Posted by Dia in Living and Dying and tagged with children, Doctors, Hospice, Life, palliative care, Talking about dying March 29, 2012

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

The “They Just Won’t Die Tax”

Posted by Dia in Living and Dying and tagged with financial costs, Hospice, humor, palliative care, Talking about dying December 8, 2011

And now, another one from the annals of the absurd.

This time it comes from British Columbia and involves a fee currently imposed on dying people who accidentally live too long. Philip Wolf of The Daily News reports in his article Just Die When It’s Convenient that The Vancouver Island Health Authority demands their terminally ill decline and die on schedule like they’re supposed to. Failure to do so will result in a penalty. Thirty dollars a day for the bed, to be exact.

It just doesn’t get much more ridiculous than this.

Now don’t get me wrong, I understand where they’re coming from. The hour of death is highly unpredictable, and its inability to conform to a calendar can shred the schedules and finances of everyone involved, not just agencies. On top of that, some people who are dying while out on their own, improve dramatically once they’ve entered the hospice system and start receiving good palliative care. And, while on the one hand that can be an undeniable and profound gift, on the other hand it definitely throws a wrench into the financial administration of their cases. I certainly don’t envy those responsible for filling the shortfall. Everybody hates the fact that money has any influence over something as sacred as dying, and I sure wouldn’t want to be the one to remind them.

This of course ties into the larger problem of unaffordable health care costs, for which I don’t have any answers. And I’m certainly not going to try and propose a solution to the VIHA’s problem because, frankly, this level of absurdity may not have one. It has coyote written all over it.

I suspect the VIHA’s dilemma and decision is just the natural outcome of trying to partner bureaucracy and mystery for the dance. Of course bureaucracy will insist on leading and naturally Mystery will tease and refuse to follow. How could this kind of pairing not get ridiculous? Remember the brilliant parody that Monty Python did on this very subject? I found it in a Youtube video. (At least the VIHA didn’t go with this solution.) Here’s Bring Out Your Dead:

copyright Dia Osborn 2011

The Difference Between Email Forwards and Blog Forwards

Posted by Dia in Living and Dying and tagged with Blogging, Life, palliative care, Respect September 28, 2011

Snopes.com

In my pre-blog life I was a serial email forwarder, an affliction which had a few stages to it. (Did anyone else go through these or was it just me?)

1) There was that heady flush of realization as I started receiving my first forwards. Whoa! Did you see all the information and creativity just floating around out there?! Stuff that I’d no idea existed and no access to before my first email account. At this point I knew…I just knew…I had to pass it all along.

2) Followed by the scary warning email phase. (Predators in mall parking lots, governments publishing cell phone numbers to marketers, flashing headlights gang initiations…oh my!!) I passed these on because I cared dammit. I cared!

3) Hard on the heels of this came the righteous discovery of Snopes and other urban myth websites (for which everyone on my contacts list was deeply grateful.)

4) After which I turned to the jokes and inspiration lists…with one caveat. I would not, not, forward chain emails. The “send this to ten people and something amazing (or terrible) will happen” type. These things are totally passive aggressive and, really, I must draw the line at guilt.

5) Then came Videos.

6) After which I reached the Links stage, the final phase. This was the point at which I’d grown from a forwarding sapling to a mature tree, achieving maximum speed and efficiency. I discovered I could litter the inbox of everyone I knew with simple URLs, like seeds, that they could then open and read for themselves. (Or not. Usually not.)

I was completely out of hand and knew I needed intervention. So when a professional contact suggested I start a blog, the idea fell on fertile ground. (I guess this is also the creation story of how The Odd and Unmentionable came into being…The Odd Book of Genesis.) And it worked. I had a new focus and my forwarding days came to an abrupt and blessed end.

But wait. Did they? Have I really stopped passing along ideas, humor, creativity, and information or have I now reached the most respectable (and respectful) phase of this impulse?

As I was preparing today’s post I realized I’m still forwarding other people’s ideas and creativity in various blog posts, only now I’m 1) doing it with full acknowledgement and links back to the source, and 2) placing it into the public arena where the horse can drink at will (rather than bombarding anyone foolish enough to trust me with their email address.)

I guess that ole’ desire to share just won’t be denied. Nor should it be of course. I shudder to imagine a world where we were all gagged and no longer able to trade insights. That would be hell.

So, for today’s forward, here’s a moving and provocative piece I found blog-forwarded over at Rangewriter. (Linda covers a broad range of topics. The common thread to all her posts is the consistently thoughtful, beautiful writing. Wander her blog if you get a chance.)

Because her post was perfect just the way it was, I lifted the whole post…with her permission…and re-posted (i.e. forwarded) it here. So, from Bronnie to Bill to Linda to me to you:

Bronnie Ware’s Essay (from Rangewriter)

I came across the following essay on A Dying Man’s Daily Journal. (Quick editor’s note: Another amazing blog. Worth checking out.) He had reposted it from an email he recieved. It is so perfect and so central to what I believe, that I want to share it and pass the word. Thank you, Bill.

By Bronnie Ware

For many years I worked in palliative care. My patients were those who had gone home to die. Some incredibly special times were shared. I was with them for the last three to twelve weeks of their lives.

People grow a lot when they are faced with their own mortality. I learned never to underestimate someone’s capacity for growth. Some changes were phenomenal. Each experienced a variety of emotions, as expected, denial, fear, anger, remorse, more denial and eventually acceptance. Every single patient found their peace before they departed though, every one of them. When questioned about any regrets they had or anything they would do differently, common themes surfaced again and again. Here are the most common five:

1. I wish I’d had the courage to live a life true to myself, not the life others expected of me.
This was the most common regret of all. When people realize that their life is almost over and look back clearly on it, it is easy to see how many dreams have gone unfulfilled. Most people have not honored even a half of their dreams and had to die knowing that it was due to choices they had made, or not made. It is very important to try and honor at least some of your dreams along the way. From the moment that you lose your health, it is too late. Health brings a freedom very few realize, until they no longer have it.

2. I wish I didn’t work so hard.
This came from every male patient that I nursed. They missed their children’s youth and their partner’s companionship. Women also spoke of this regret. But as most were from an older generation, many of the female patients had not been breadwinners. All of the men I nursed deeply regretted spending so much of their lives on the treadmill of a work existence. By simplifying your lifestyle and making conscious choices along the way, it is possible to not need the income that you think you do. And by creating more space in your life, you become happier and more open to new opportunities, ones more suited to your new lifestyle.

3. I wish I’d had the courage to express my feelings.
Many people suppressed their feelings in order to keep peace with others. As a result, they settled for a mediocre existence and never became who they were truly capable of becoming. Many developed illnesses relating to the bitterness and resentment they carried as a result. We cannot control the reactions of others. However, although people may initially react when you change the way you are by speaking honestly, in the end it raises the relationship to a whole new and healthier level. Either that or it releases the unhealthy relationship from your life. Either way, you win.

4. I wish I had stayed in touch with my friends.
Often they would not truly realize the full benefits of old friends until their dying weeks and it was not always possible to track them down. Many had become so caught up in their own lives that they had let golden friendships slip by over the years. There were many deep regrets about not giving friendships the time and effort that they deserved. Everyone misses their friends when they are dying. It is common for anyone in a busy lifestyle to let friendships slip. But when you are faced with your approaching death, the physical details of life fall away. People do want to get their financial affairs in order if possible. But it is not money or status that holds the true importance for them. They want to get things in order more for the benefit of those they love. Usually though, they are too ill and weary to ever manage this task. It is all comes down to love and relationships in the end. That is all that remains in the final weeks, love and relationships.

5. I wish that I had let myself be happier.
This is a surprisingly common one. Many did not realize until the end that happiness is a choice. They had stayed stuck in old patterns and habits. The so-called ‘comfort’ of familiarity overflowed into their emotions, as well as their physical lives. Fear of change had them pretending to others, and to their selves, that they were content. When deep within, they longed to laugh properly and have silliness in their life again. When you are on your deathbed, what others think of you is a long way from your mind. How wonderful to be able to let go and smile again, long before you are dying. Life is a choice. It is YOUR life. Choose consciously, choose wisely, choose honestly. Choose happiness.

“We tend to forget that happiness doesn’t come as a result of getting something we don’t have, but rather of recognizing and appreciating what we do have.”
-Frederick Koenig

Thanks to everyone involved in this chain of insights, especially those who were dying.