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

Posted by Dia in Living and Dying and tagged with End-of-Life, Hospice, Life, Medical decisions, Oddities, Talking about dying September 3, 2013

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

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

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

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

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

This isn’t true for a couple of reasons:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

copyright Dia Osborn 2013

A Better Way To Die

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.”

There’s a whole lotta love coming out of Oklahoma

Posted by Dia in Living and Dying and tagged with Grieving, Hospice, Life, Living and Dying, Writing August 12, 2013

Book Review: Transitions: A Nurse’s Education About Life and Death by Becki Hawkins.

Some of you may remember an old post I wrote called Someone Else Wrote My Book: What Now? where I expressed some angst at the discovery that a hospice nurse/chaplain from Oklahoma had just published the book I was trying to write. Well, after a year of dark muttering in my cups I finally read Transitions: A Nurse’s Education About Life and Death by Becki Hawkins and loved it. Loved.

Her book brought it all back to me again in the best way, what it used to feel like when I worked with hospice and how the people I served strengthened, nourished, and changed me. Transitions provides an authentic portrayal of the endless number of ways that people face catastrophic illness and death, not in a clinical or grisly way, but in terms of the beautiful and vulnerable humanity that inevitably surfaces.

More poignant still, Becki reveals the transformative power generated by something as simple as accepting the overwhelm and grief of another human being. There are some terrific reviews over on Amazon that do a better job than I could at describing her gentle, loving handling of the subject matter (especially the one titled Nurse Conquers Attack Geese, Copperheads, Sceptics which I wanted to copy and paste in full here but didn’t for fear of getting caught) so I won’t try and cover that ground again. I’ll just mention a few of the particular reasons why I loved the book so much myself.

Number one, Becki’s career spanned decades and her stories are written through the eyes of someone who’s seen people die from a lot of different things, something that’s actually pretty rare. I got to take the journey again with her as she evolved and changed through the work and it took me right back to the mystery, magic, and intense vulnerability one experiences while roaming the dying rooms. The way that each person winds up teaching what an extraordinary, mind blowing feat it is to live an entire life from beginning to the very end.

There is no such thing as a boring life, just boring ways to talk about it (something one encounters both in and out of hospice.) But with some practice, good listening skills can overcome that problem and Becki’s clearly a master listener. She draws out the thoughts of those she worked with in a way that allowed a quality of luminous, trembling soul to shine through and the book is full of the kind of dignity and strength that results from that level of respect.

Which brings me to the second reason I loved the book. Becki not only captures the full range of experiences of what it’s like to work with the ill and dying, she captures it in the abundant charm of the Oklahoma vernacular. She has quite an ear for the spoken word and delivers her stories in an enjoyable blend of modern medical language and the older, traditional language of her people. For me, the book was as much a loving portrayal of the culture and people of rural Oklahoma as it was of their health status, and when reading her stories I felt like I was peering in through a window to catch glimpses of an old wisdom tradition passed down through the generations.

A quick head’s up for those who are not of a religious bent, a lot of this wisdom tradition is couched in the religious terms of the region and from a couple of reviews I read this was a stumbling block for some people. It was actually part of the reason it took me so long to read the book myself but as I got to know Becki personally over the last year I discovered that she’s one of those people who can love her own faith while also respecting and supporting the beliefs of others and that knowledge helped me relax and let down my shields. I’m really glad I did, as I would have missed something beautiful, heartfelt, and universally true otherwise. No matter how we express it individually, we all die with the same aching mixture of heightened longing and love.

And the final reason I loved it that I’ll mention here is because in the last section of the book Becki reveals how her professional work with the ill and dying eventually helped her navigate the illness and dying of her own loved ones, and I found her experiences to be a confirmation of my own. While the illness and death of a loved one is just as overwhelming for those of us who’ve worked with the dying…the loss as great and the grief as piercing…still our familiarity with and intimate understanding of the dying process helps enormously when the time comes. I can’t say this enough. A knowledge and understanding of dying is an anchoring influence for everyone involved.

Of course everyone can’t go out and become a nurse and work for decades in the field to gain that kind of familiarity and understanding, but everyone can read books like this and begin to arm themselves with the knowledge of those who have.

I know I keep saying this over and over again but it’s only because it’s so important: We all need to be better educated about this last and greatest journey of dying, and we need to start doing it now. The number of aging people approaching their final threshold is growing daily and in the next few decades dying will become a central, collective social event. But that doesn’t mean it has to be a sad, tragic, and horrible era. At all. With the tools and perspective that hospice and palliative care provide it’s entirely possible for us to collectively craft a thoughtful, courageous, and wiser way to approach the end of our lives, one that’s dignified, loving, generous, and ultimately life-nourishing for us all.

Transitions: A Nurse’s Education About Life and Death is another book among a (thankfully) growing number that provides a window into such an approach. I highly recommend it.

Other references:

Here’s a Youtube video of an engaging talk Becki Hawkins gave in Sedona, Arizona about some of the spiritual experiences she saw in her work.

And here’s a link to Becki’s blog Transitions.

What Color is Dying? (Hint: It’s a Trick Question)

Posted by Dia in Living and Dying and tagged with Beliefs, Hospice, Life, Living and Dying, prejudice, trick questions July 30, 2013

During a chat over coffee this morning a colleague asked me the above-mentioned question and…I admit it…the first color that came to mind was black.

He smiled and said that was the first color that came to his mind, too, and during the following discussion we agreed that black would probably be the first color springing to mind for the majority of Americans and possibly other western cultures, too. (It would probably be white for many of those from eastern cultures.)

So why is this a trick question? Because black (and white in some cultures) is the color associated with death. But dying people aren’t dead yet. They’re still very much alive. This question reveals how we tend to subconsciously view the dying as close-enough-to-dead-to-count, an unfortunate tendency that does a lot of harm to everybody.

This prejudice is deeply ingrained as evidenced by the fact that even my colleague and I (who have worked extensively with the dying in hospice) still defaulted to black as our first association. Like any solid prejudice I believe it’ll take work to examine, uproot, and then change it, but it’s worth the effort because if we don’t, we’ll all wind up as one of “those people” while we’re dying and suffer the stigma and exile that currently goes along with it.

Once my colleague and I recognized and talked about our conditioned response, we then asked the question again and came up with completely different responses. He said that, for him, dying is actually quite purple, a color that he loves and relates to on a deep level. I on the other hand kept seeing a prism in my mind, shattering a sunbeam into a thousand different colors.

And here’s what I found most interesting about the difference. When I saw dying as black I felt like I’d just pulled a plastic bag over my head. But when I let that go and suddenly saw it as a prism full of rainbows instead, that feeling of suffocation turned into curiosity and wonder and a delightful sense of mystery which honestly was the experience I tended to actually have when I worked with hospice. It was really, really magical hanging out with dying people, not black at all.

BTW, the opening/closing question marks at the top of the post came from a Wikipedia discussion of question marks (“also known as an interrogation point, interrogation mark, question point, query, or eroteme”), which was kind of interesting in its own right and totally distracted me. (Not hard to do though.) Here’s the link.

copyright Dia Osborn 2013

Random Hot Tip About Dying #5

Posted by Dia in Living and Dying and tagged with afterlife, Beliefs, Hospice, Living and Dying, Mystery July 16, 2013

(This photo is taken from an email forward I received full of beautiful tunnel photos, none of which were credited of course. Grrrr. I’d LOVE to give credit where it’s so richly deserved so if anyone knows who took this shot, please, please, please let me know!)

This post is continued, as expected, from Random Hot Tip #4. It’s a looooong one. Sorry. (Although if you think reading it is hard, you should try writing it. F**k.)

Last but not least we come to random hot tip #5:

There’s some version of an afterlife/afterwards for everyone. Pick yours and start making it work for you now.

To be honest, this morning I’m wishing I never added this tip to the list. It’s a loaded subject…something I realized with chagrin as soon as I sat down to write this. Plus, I’m not a chaplain or an atheist or a ghost or anyone else qualified to address either side of this existential topic with authority.

But since I swore to myself that this time I’d follow through and explain every last tip I so glibly tossed out there, I guess I’m stuck with it. I’m only going to share what I observed and then one thought I had about it, hopefully without upsetting anyone enough to make them yell at me. Here goes.

One of the many intriguing things I encountered while working with hospice was the wide range of beliefs about what happens after a person dies. I’d already heard about most of them of course, but still, they take on a whole new light in a hospice setting.

For one thing, they finally matter. A lot. The people I was working with were about to actually find out what happens for themselves, and they cared about it in a way that people who aren’t dying yet just don’t.

In addition, I was experiencing a kind of full body immersion in each belief while hopping from home to home. Working in hospice, it’s critical to understand and embrace the unique beliefs of each home we enter in order to best support the dying person and their loved ones from the foundation they’ve built in their own lives. We don’t have to adopt their beliefs of course…we can’t, there are too many of them and often conflicting besides…but we try to observe every sign of respect, and look closely for whatever value, love, and strength is inherent in each, and then use that as much as possible to deliver our help.

(It really changes you, by the way, learning how to find, respect, and embrace the good in someone else’s beliefs without having to believe it yourself. I can’t tell you how much more mysterious and beautiful and friendly the world becomes in an instant. It’s pretty amazing. Harder to do outside a hospice setting though.)

I couldn’t help but notice how much this particular belief, the one about what happens to a person after they die, influenced the way each person viewed the value of whatever life they had left, as well as shaping how they faced their dying process. While each belief I encountered was absolutely unique, collectively they seemed to break down into three broad categories:

1) The belief that their spirit or consciousness or self will continue in some way afterwards.

2) The belief that their consciousness or personality or sense-of-self will end with physical death (and hopefully that their legacy lies in the good effect they had on the world. Without this second part their depression was pretty pronounced.)

3) The belief that they really, truly don’t know what happens and they’re waiting to find out.

The majority of people around here fell into the first category, which was also the one that seemed to help most with a person’s fear of dying (unless they felt guilty about something and worried about punishment after the fact.)

The number of people in the second category were far fewer and, while they savored the sweetness available at the end as much as anyone, overall I found them less prepared to cope with the many indignities involved, with a greater tendency to devalue their life as their helplessness grew.

And in the end I didn’t see anyone who genuinely believed number three. While there were a number of people who said they didn’t know what happens (actually, they always said nobody knows what will happen) it eventually became clear that really, they believed in one of the other two but were just reluctant to say so for various reasons.

Okay. That’s what I observed. Now here’s one of the main thoughts I had about it.

I think all three beliefs have the potential to wield a final influence that’s helpful or harmful. But in reality, there was a general trend worth noting.

Belief Number One…the one that says some version of the self continues after death…usually did the best job of helping the dying person face and navigate the profound challenges involved at the end of life. These people tended to experience less bitterness about the indignities they were experiencing and genuinely longed for their lives more all the way to the end.

Now, BEFORE ANYONE STARTS SCREAMING AT ME:

I’m not suggesting that this in any way makes Belief Number One a superior belief, or that it means everyone should embrace it. I’m not. That would be utterly useless and disrespectful besides.

What I DO think is that Belief Number One has had tens of thousands of years worth of a head start on weaving some kind of nourishing, helpful meaning into the overwhelming existential realities of dying and death. Collectively, we’ve been living with, exploring, and deepening our belief in an afterlife since the dawn of human history so no wonder it works for us now.

Belief Number Two (let’s leave Three out of this for a moment) is a relative newbie on the scene and has, in some ways understandably, spent more of its time trying to reject the meaning offered by Belief Number One than it has developing an alternative but equally helpful and nourishing meaning of its own. But with the growing number of people embracing this belief I think it’s work that really needs to be done if they’re not to overwhelmingly choose suicide or euthanasia at the end as seems to be the current trend. (I only mention this because killing ourselves and each other, especially in large numbers, can wreak havoc on a society.)

We humans need meaning. It’s not a weakness, it’s just a thing.

I have a couple of friends who believe they’ll cease to exist at the point of death (actually they believe everyone will, but then that spirit of generalization is a quality generally shared across beliefs.) But they also feel a profound curiosity about some tendrils of mystery they glimpsed during an experience with the loss of a loved one. They feel attracted to what they experienced and uplifted by it, but are reluctant to admit it publicly because it’s precisely the kind of thing that’s so easy for the other side to misunderstand, twist, and then crow over.

But in private they share that they’re as moved as anyone else by the symptoms of strange and serendipitous beauty they witnessed towards the end. It’s just that they ascribe the mystery involved to something else, even if they’re not entirely sure what yet.

And then there’s Belief Number Three. Even though I never worked with a patient who truly embraced this belief, I know other people who do, at least so far. (We’ll see if it holds up under the final test.) And, after six years of watching people die, this is the one that I myself have drifted in closest to.

I’ve had a number of people over the years ask me some version of the question After everything you’ve seen what do YOU think happens after a person dies? And honestly? At this point I kind of feel like the sky’s the limit. I suspect anything can happen. Maybe ALL of it happens, just to different people. Maybe some go to Valhalla or Hades or Heaven, maybe some stick around for a while to help their descendents along, maybe some really do just cease to exist while others merge with Nirvana or a mountain or the entire universe somehow. Maybe some reincarnate, or get stuck haunting for a while, while others continue on in some way or form or place that nobody has even imagined yet.

I really, truly don’t know what to believe about all that anymore.

But I’ll share something I experienced numerous times that left a deep impression. It was this sensation of a vast kind of love that tended to show up in the dying rooms. How, when everything else was finally stripped away and all of us were left there, raw and quivering and totally exposed, what remained was this current of love in the room that swept me off my feet and sent me reeling every single time. I honestly, hand to god, don’t know where it was coming from…that’s my mystery. Whether it was just me feeling it, or if it was coming from the other people who were there, or from something outside of us all, or some combination that then took on an existence of its own, I just don’t know.

What I do know is that it’s influence was about as real as it gets. It was tangible and helpful in the most physical way, and weirdly it both seared and reassured me, and sometimes other people told me it helped them, too, and over time as my eyes adjusted to it, I started to see it in a lot more places. Like…well, almost everywhere. And after a while the sheer energy of it started to transform me to the point where I was having a little trouble functioning in the world actually, which is an interesting but different story.

And then one day I realized, to my surprise, that I was shifting away from everything I used to believe in and starting to just believe in that experience of love instead. And that’s kind of where I am now. I have no idea what will happen after I die and don’t really care beyond some mild curiosity. However, I do hope that whatever happens, this big love that gets generated from where-I-do-not-know will still be around because, if it is, I feel like I can deal with anything else.

That being said, the question of “afterwards” feels kind of irrelevant to me right now. The big gift I’m getting out of believing in this love is that, whatever happens next, it’s nurturing and comforting me today. It makes me want to be a better, kinder, more compassionate and understanding person now, it lends me courage and meaning and strength now, and it inspires me to take better care of my little corner of the world right now.

And ultimately, I think that’s something practical and immediate that any of these belief should also shoot for. Whether or not they wind up being true in the long run, if they deepen and enrich and strengthen our lives and communities and world right now then we should develop and embrace them. Because we desperately need all the help we can get while we’re here.

Anyway, that’s my two cents worth. Add a couple dollars and it’ll buy you a beer.

copyright Dia Osborn 2013

After a Crisis of Faith, a Former Minister Finds a New, Secular Mission

Good Without God

Mon Pere Speaks! Hospice in his own words.

Posted by Dia in Living and Dying and tagged with Gratitude, Hospice, Life, role models, Talking about dying July 9, 2013

I’ve written about my father-in-law’s surprising, tricky, and wonderful journey with prostate cancer and hospice in several posts now. (I’ll have links to them at the bottom for anyone interested.)

Well, Mon Pere’s experiences with hospice have been so good that he’s become quite the convert and unbeknownst to anyone in the family, he went off and did an interview with the Idaho Quality of Life Coalition in order to try and help alleviate some of the persistent confusion that exists around hospice care. Afterwards the video was posted on Youtube! (Which is all kinds of ironic since Mon Pere doesn’t own, want, or even like computers very much. I’m pretty sure he doesn’t know what Youtube is.)

Anyway, my brother-in-law just stumbled across it by chance today and emailed the link to the rest of us. I thought I’d put it up here, too, both to help Mon Pere with his awareness raising efforts as well as introduce him to you all in person. (The interview is about six minutes long.)

He’s really trying to behave himself but his ribald sense of humor sneaks in towards the end with his little joke about dancing (the unabridged version suggests a more carnal activity.) We’ve all heard the joke…and others like it…more times than I can count but he laughs like it’s the first time, every single time he tells it. He’s such a character.

Without further ado I give you Mon Pere.

copyright Dia Osborn 2013

The other posts:

Elders and the strange gravitational effect of final mystery.

I’m still here. Updates on wildfire smoke, a hospice patient in the family, and garden things.

“I hope you don’t mind but I’ve never died before, so I have some questions.”

Massachusetts and Question 2: Should doctors be allowed to prescribe lethal doses?

Random Hot Tip About Dying #2

Posted by Dia in Living and Dying and tagged with End-of-Life, Hospice, Life, love, Talking about dying May 9, 2013

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

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

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

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

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

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

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

I chuckled and went back to my book.

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

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

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

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

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

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

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

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

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

copyright Dia Osborn 2013

Weddings and Funerals and Hospice, Oh My!

Posted by Dia in Living and Dying and tagged with Funerals, Happiness, Hospice, Life, Living and Dying, Talking about dying, Weddings March 25, 2013

Required: Emotional Flexibility to handle wide swings.

There’s a lot going on these days. First: A news headline.

Beloved daughter and longtime boyfriend get engaged on Valentine’s Day, set date for June. Mother surprises herself and approves.

Why the surprise? Well, partly because I’m not a big fan of weddings. In my teens, I used to have nightmares about being a bride trapped in a church ceremony from which there was no escape and I’d wake up every time with my heart pounding, scared to go back to sleep. These dreams left an impression. In waking life, I actually ran away during my wedding to the hubster and he had to head me off before I made it into the woods, then carry me back. (He’s both quick and strategic, thank God. But that’s a story for another post.)

And then, of course, there are all the other things to worry about where the post-wedding marriage is concerned, especially when entered into by a couple of novices who are all dazed and happy and oblivious to that circle of glowing eyes waiting just beyond the twinkle-lit garden.

But in spite of my entrenched dread of weddings and general worrying nature, when Beloved Daughter and Soon To Be Son-In-Law (SIL) sat us down and told us the news, my first response was enthusiastic and joyful and even…god help me but it’s true…optimistic. You could have knocked me over with a feather. I was actually happy for them which, I should mention, is an excellent sign since my initial, gut level reaction to things is usually pretty accurate.

So, reality #1: I’m in happy wedding mode.

Then there’s the other thing happening.

The hubster’s whole family is still in hospice mode, circling the wagons around Mon Pere as he cheerfully and busily packs as much as possible into the shining, beloved life that still remains to him. I haven’t posted any updates in a while but he continues to amaze in his approach to the whole thing.

He’s slowed down considerably and is sleeping more and more, but even so he still goes out to attend classes at the local university, voraciously reads and replenishes a stack of books that would choke a pig, gets together with family and friends for every occasion possible, and has thrown himself into a cause that would be of enormous benefit to the safety of our entire community.

He’s extraordinary. Really. When I think of how much earlier we probably would have lost him if he hadn’t gone on hospice and started receiving good palliative care, I shudder. There are too many lives being worsened or cut short these days because of overly aggressive treatment or uncoordinated care late in life, and I’m profoundly grateful…every single day…that Mon Pere managed to steer clear of those treacherous shoals.

He’s a wily old fish, that one.

So, reality #2: I’m also in emotional, unpredictable hospice mode.

Then there was this third thing that happened last week.

The hubster’s oldest and best friend lost his 90+ year old mother a week and a half ago and the family held the funeral Thursday evening. The hubster and I attended, as did Mon Pere since he’s also close to Best Friend.

In fact, Best Friend asked Mon Pere (who is an excellent public speaker) to stand up for him and read a brief vignette he’d written about his mother during the funeral, since he knew he’d break down and sob uncontrollably if he tried to read it himself. Mon Pere was happy to help out in any way he could.

What happened next was moving and astonishing to me.

In a curious turn of events, the hospice that cared for Best Friend’s mother is the same hospice currently caring for Mon Pere, and since the chaplain presiding over the funeral proceedings was the chaplain for this hospice, Mon Pere knew her quite well.

So before he started reading the vignette, he took a moment to express his appreciation for the chaplain specifically and the kind of work that hospice people do in general, and then things became startlingly poignant when he shared that the reason he knew her was because he was currently in hospice himself with prostate cancer.

I heard the woman sitting behind us gasp when he said it, and there was a brief, electric rustle that went through the room before things settled back down again. It was only a few sentences spoken simply and sincerely, as though he was sharing that he and the deceased had an old school friend in common, and then he bent his head to read Best Friend’s story. And that was that.

It was a brief moment, startling and fragile and honest and moving, but everything afterwards was made a little bit more beautiful and real and immediate for it. It was like he’d taken a needle and innocently woven an additional, luminous thread into the tapestry of all of us assembled there, and suddenly life was no longer just a two-dimensional kind of us and them thing anymore—those who are alive and those who are dead.

For a heartbeat he stood there, simple and shining, as a reminder that life isn’t so much a table that we fall off and disappear from as it is a perpetually flowing river, something that’s sweeping us all from upstream to downstream to a final spill out into a big ocean that was always waiting there to receive us. Best Friend’s mother washed into that sea a week and a half ago while Mon Pere’s pace is picking up in a final, quickening rush to get there, but that doesn’t mean either of them will ever be gone. They can’t be gone because no matter how far ahead they and their peers get, it’s still the same water carrying us all.

So. In my third and final reality these days I am:

Wedding-happy, hospice-reeling, funeral-touched, and bobbing somewhere along the length of a winding, luminous river filled from headwaters to ocean with dearly beloved companions.

Which makes today another very, very good day. Shakespeare (as usual) says it best:

copyright Dia Osborn 2013

Hospice Patients Declared Business Assets By National Hospice Chain

Posted by Dia in Living and Dying and tagged with health, Hospice, Living and Dying March 8, 2013

A national, for-profit hospice chain has just sent its lawyers into court to fight over who gets the patients of a non-profit hospice that’s going bankrupt.

In their filing, Gentiva Health Services Inc. objects to the plans the failing San Diego Hospice has made to transition all willing patients to another local provider in a way that can keep patients, some existing employees, and hospice facilities together as much as possible, thereby causing the least disruption for those dying in their care.

Instead, they want the bankruptcy judge to break up the parts and, in essence, sell off the patients (referred to as the “business” in legalese) separately from the real estate. They’ve made a $1 million bid for the “business” and their filing language basically reduces these 450 rare, luminous, and achingly vulnerable human beings to the status of “valuable assets.”

This is a hospice. Referring coldly and deliberately to dying people as so much business property. You’d think that was bad enough. It’s not.

They did it in open court. A public forum with media coverage. They either didn’t realize or didn’t care how these patients might feel to read a news article and hear themselves described in such demeaning and dehumanizing terms.

From the article Creditors decry Scripps hospice deal:

Gentiva Health Services Inc., the Atlanta-based company that made the $1 million offer, objects…saying that doing so amounts to handing over the hospice’s business for free, a move that would not maximize value for creditors who want to get paid.

In court papers, Gentiva states that San Diego Hospice’s “relationship with its 450 patients”** is a “valuable asset” of its estate.

(**see note below)

“Gentiva is ready, willing and able to pay Debtor the sum of $1 million for an orderly transition of the hospice business,” the filing states.

How in the world can people who run a hospice talk about dying people like that?

Look, I think we all understand that there’s a business dimension to hospice care. Nobody can keep the doors open for long if they’re not financially responsible enough to obey the laws and pay their bills.

But that should never be construed to mean that profit can be shamelessly embraced as the bottom line like this. The mission of the hospice movement has always been to serve the dying, not monetize them. Whoever doesn’t understand that difference really shouldn’t be working in the field.

** Obviously, no one can legally buy, sell, or award patients themselves to any hospice company. Theoretically, patients are always free to choose whomever they want, including the freedom to change hospices at any time, for any reason. Any of these 450 people, if they so chose, could go back to the drawing board, start the process all over again, and interview as many hospices as they wanted.

Theoretically.

In reality though, that almost never happens. The vast majority of patients never interview hospices at all. Neither do they themselves choose one. They’re almost always referred to the specific hospice favored by their personal doctor or the hospital they’re using and then they stay with that hospice for the duration of their life.

Furthermore, as a patient’s condition deteriorates and they get closer to death, the risks of disruption of care associated with a change in hospice provider rise geometrically and it usually becomes unwise to change, even if they still had the energy to do so.

So even though theoretically these 450 patients get to choose whichever hospice they’d like next, realistically speaking almost all of them will go to whichever one their records are legally transferred to. They’ll probably be informed in some obscure way that they don’t HAVE to go with that hospice, but they either won’t understand or they won’t care. They’ll be far too overwhelmed with the daily tasks of dying to deal with it and they’ll just want to know who’s going to take care of them next.

When Gentiva says it wants to buy “San Diego Hospice’s relationship with it’s 450 patients”, what they’re saying is they want to buy access to patient records, contact information, and most importantly, patients’ expectations that Gentiva will be the hospice assuming their care going forward.

So even though theoretically dying people can’t actually be bought and sold, for all practical purposes they most certainly can.

copyright Dia Osborn 2013

Respect Can See Through Walls

Posted by Dia in Living and Dying and tagged with Hospice, Life, Living and Dying, Respect December 4, 2012

(Photo from an interesting blog post on the possible development of real magic glasses–or Google glasses as they’re currently known.)

There’s a skill required in hospice work–the ability to hang one’s own opinions and views on a hook outside the door, the better to help the dying person and their loved one anchor into their own values and beliefs.

The name of this skill is respect.

When I began working with hospice I didn’t have it. Did. Not. Have it. In fact, I had its antithesis…a big, fat mouth. I’ve always loved my own opinions a lot, so leaving them hanging on a hook outside the door was kind of painful for me. And scary. And hard.

A couple of transgressions was all it took though. There’s nothing like watching the stupid, pointless harm an unwanted opinion inflicts on a person who’s already vulnerable and reeling, to make one try just a wee bit harder the next time.

Fortunately, it turned out I love not feeling like shit more than I love my own opinions.

(Barely.)

Then I noticed something unexpected happening each time I managed a modicum of genuine respect– whenever I stuck my arm down through the muck, grabbed my better self, and dragged her up for air.

It changed my eyes somehow, like I’d slipped on x-ray glasses and could see through things. The person I was looking at would transform.

There’s a common misconception that dying people become “not themselves anymore.” That just because they can no longer wipe or feed themselves, they turn into something that nobody should remember. Or if they grow confused and forgetful then their very self–the person they became over an entire lifetime of becoming–ceases to exist.

But that’s so not true, something my new x-ray eyes revealed.

Respecting them helped my eyes see through all the things I used to identify as who a person is…their ability to think and accomplish, to choose and control. Through their magically shrinking bodies and even their poop and pee (which was no small feat for me)…to where they still existed, underneath it all.

I discovered that even when they’d lost just about everything else the fighters kept on fighting, the controllers still tried to micro-manage, the takers were still demanding, and the dignified kept hitting walls because so much of the dying process just isn’t.

Generous people were still mostly concerned about those being left behind, grateful people were a real pleasure to work with because they could find value in just about anything (double-ditto for the humble) and I once watched a woman of deep faith continue to sing little songs about Jesus past the point when she could remember her own name.

It finally hit me that while we can and will lose control over everything…EVERYTHING…else, none of us ever stops being who we are. We can’t. Anymore than water can stop being wet.

And then, as my respecting skill improved, I started seeing something else that appeared to be deeper still.

There were these odd little moments when I’d glance up from adjusting a pillow or changing a diaper or wiping a chin to find this unraveling human being gazing into my eyes with a receptive stillness, a grace, that made me feel like I was like looking into…I don’t even know what. Another dimension? A place so tender and vulnerable and luminous it made me ache.

The funny thing is these moments could happen with any patient–fighter, controller, taker, generous, grateful, or humble. It really didn’t matter. While there were more of those moments with some than others, after a while even the most difficult people I worked with let their shields peel back to reveal that shining, beautiful place inside them.

Over time I learned that the more of my opinions I could leave outside the door, the more of these moments I experienced, and I suspect the reasons for this were two-fold. First, because I just learned what to look for. And second, the more respectful I was, the safer they felt revealing it to me.

Now I know what you must be thinking…did she transfer this skill to her life outside of hospice, too?

The answer is not so much. I’ve found it’s harder to do in the regular world because it’s not practical to leave my opinions and attitudes, my values and beliefs, hanging on a hook outside my entire life. That’s like cutting the rudder off my ship. I need those things to navigate all the choices life presents.

I assume there must be another level to this skill that I don’t get yet, one where I can be fully present as me while still supporting others to be fully present as themselves. A way to respect and harness both at the same time no matter how different they are.

I’m pretty sure if I could master that level I’d walk around in a state of wonder every day.

I’d love input. Has anyone else ever experienced this kind of x-ray vision or…even better…gone to the next level? If so what does it look like and how does it work? I’m really curious.

copyright Dia Osborn 2012

Massachusetts and Question 2: Should doctors be allowed to prescribe lethal doses?

Posted by Dia in Living and Dying and tagged with Hospice, Life, Massachusetts "Question 2", Suicide November 6, 2012

Today citizens of the Commonwealth of Massachusetts will decide whether or not it should be legal for doctors to prescribe a lethal dose of medication for a patient with a terminal diagnosis who decides they want to end their own life. It’s called the “Death With Dignity” Initiative, Question 2. The legislation follows similar legislation in Oregon, Washington, and Montana and once again seeks to address a complex, emotionally charged, communication-resistant issue with the blunt instrument of legal policymaking.

I wish everyone could take a few deep breaths, actually sit down together, and finally talk about what’s really going on instead of skipping the discussion part and heading straight for the polls.

WE ALL NEED TO START HAVING THOSE LONG, THOUGHTFUL CONVERSATIONS WITH EACH OTHER…WITH OUR CHILDREN AND SPOUSES AND PARENTS AND FRIENDS, WITH OUR DOCTORS…ABOUT HOW SCARED WE ARE OF DYING AND WHAT WOULD HELP MAKE IT LESS SCARY FOR US.

One of the biggest obstacles I see to this happening right now is the fact that most people simply don’t know enough about what dying entails to have a useful conversation. The amount of misinformation out there is incredible…not to mention the levels of pure superstition still operating…and there’s almost no practical, nitty-gritty kind of educational outreach to counter it all with.

Why? Because most people don’t want to be educated about dying. One of the oldest and most powerful superstitions around says that talking about dying is morbid and unhealthy at best and risky at worst, so for godsakes don’t do it yourself and definitely stay away from anyone else who’s talking about it.

Good luck trying to fill an About Dying classroom after that.

We’ve just battled through one of the variations on this superstition with my father-in-law, Mon Pere. After years of no symptoms his cancer finally metastasized and started generating pain. Lots and lots of pain. Lots. He was seeing three different doctors from three different offices with three different perspectives of what was going on, depending on their specialty. In spite of the escalating urgency of the situation, it was often a week before any of them could see him after which they’d prescribe medications that were largely uncoordinated with no follow-up to make sure he was taking them correctly or that they were working.

Needless to say, none of this was getting his pain under control, but the meds were starting to have undesirable side-effects which made things even worse. Mon Pere’s decline started to escalate and he was going downhill fast. He’d wake up every morning and cry helplessly for hours, he couldn’t attend to a growing number of his own needs, and he was having some serious thoughts about suicide because, if his doctors couldn’t do anything, it was starting to look like death might be the only thing that would provide effective pain relief.

Here’s where the battle with the above-mentioned superstition began.

I wanted him to enroll in hospice care immediately. Why? Because one of the specialties of hospice lies in managing precisely the kind of escalating pain he was experiencing and I felt a good hospice team could probably get it under control and maybe even eliminate it.

I wanted him to enroll in hospice so he could return to his life and start living again.

And he was eligible for hospice care. Mon Pere didn’t want aggressive treatment for his cancer…he wasn’t about to subject himself to chemo or radiation at his age or stage of illness. But when I…along with two of his doctors, his physician-son, his R.N. daughter, and his nurse-practitioner ex-wife…first urged him to enroll in hospice, he balked.

“I don’t think I’m dying yet,” he told me and everyone else. Again and again. “I think I have a lot more time.”

Mon Pere was laboring under one of the most common misunderstandings about hospice. He was afraid that signing up was tantamount to giving up, to being written off, or worse, actually hurried along to the grave, and because this pernicious superstition is so pervasive and widespread, like most people he was having trouble understanding what I kept trying to tell him, that we just wanted him under the care of the specialists who knew how to treat what he was actually dealing with.

We didn’t want him to enroll in hospice to die, we wanted him to enroll in hospice so he could LIVE again…right now and a hell of a lot better…because by that point he wasn’t living anymore. Most people still don’t understand that uncontrolled pain is not just a misery, it’s a killer. His pain had not only stripped him of any joy and pleasure in his life, it was actually speeding up his decline.

It’s really a testament to how much he loves and trusts his family that he agreed to enroll in spite of his confusion and misgivings. And it’s been everything and more that we hoped for. His pain symptoms started to ease up within a few days of the medication changes and are now pretty much gone. He’s back to taking his walks, albeit with a cane, and savoring the colors of autumn. He looked at me once, eyes widening a little with the surprise of it all, and said the world has never looked so beautiful before. And he confided to the hubster the other day that if this is what dying is like…if there’s no pain and all he has to do is slow and then stop and eventually fall asleep and not wake up again…well then he can do that.

He was so relieved.

He can’t say enough good things about hospice now. He’s like a convert because he understands what it’s really for…that it’s not a place to throw away dying people. It’s a place for those who still truly, deeply want to live the time they have left.

Because this gross misunderstanding about hospice and palliative care continues, there are a whole lot of people out there missing out on the real gifts they bring to the table. Too many people have come to believe, like Mon Pere did, that dying of necessity involves a cascade of escalating, uncontrolled, and unbearable symptoms that the medical system can no longer do anything about. They believe there is no dignity in that kind of death and honestly, I agree with them. When people die like that…and they still do, every day…it means that our whole system has totally failed.

But obviously, I don’t agree that suicide is the first and best alternative. I believe it should be among the last options because, like Mon Pere, most people would rather live IF IT COULD STILL BE A GOOD LIFE.

Mon Pere did consider suicide at one point but not because he wanted to die, it was because he needed relief. His life was fast becoming so unendurable that ending it seemed like the only alternative and, if our local legislation and resources had evolved to favor assisted suicide over hospice care, he might very well have availed himself of that option by now.

Which would have been another dismal failure of our system because dying wasn’t what he wanted at all.

The fact is a majority of people think about suicide at some point when facing a terminal diagnosis, especially in the early stages. It’s natural and there’s nothing wrong with it. It’s usually either a panic response to the fear that they might wind up trapped in something unendurable or a despair response that the life they have left will be meaningless.

With the help of those experienced in end-of-life care, people usually get past this stage. And sometimes they even move on to experience the sweetness and wonder of a world made luminous by dying in it. And a lot MORE people could if we could just somehow get past that other pernicious superstition that gets in the way all the time, the one that claims dying is a taboo topic that should never be discussed.

It’s impossible you know, to explore solutions for a problem without actually talking about it.

I wish real, deep, wide-ranging, honest, courageous, mass conversations about dying could start taking place before we pass any more legislation making suicide so easily available by simple prescription. It’s not that I believe suicide is immoral or sinful or wrong. I don’t. There are cases…both with those who are terminally ill and others…where someone’s life has truly become so chronically unendurable to them that death is a mercy and a gift.

But these cases are the rare exception and not the rule. And long before reaching that point there are other really, really good options to explore, if only we’d be willing to TALK about them.

The Titanic and Something Mysterious Going On in the Dying Rooms

Posted by Dia in Living and Dying and tagged with Hospice, Life, Mystery, Relationships, Talking about dying, Titanic, wonder October 20, 2012

(Image from the blog Corazon’s Corner.)

I indulged in a day of lunch and theatre with an old friend from the hospice I used to work with recently. Les Miserables. Music to knock your socks off and blow your hair straight back…especially as we were sitting in the first row directly in front of a two-story speaker. I couldn’t hear for an hour afterwards but I didn’t want to either, at least not until my body finally stopped vibrating with the memory.

It was a beautiful afternoon spent with a dear friend doing wonderful things.

He used to be the social worker for our small hospice before the owner died and everything fell apart so naturally, over lunch, we spent some of our time reminiscing about the old days. We got to talking about dying and death in general and, before I had a chance to say anything, Dear Friend blurted out.

“Everyone is SO obsessed with death!” He seemed excited which, for Dear Friend the Placid…the Even…was startling. “It’s all you ever hear about!”

He went on to complain about the constant, battering stream of drug commercials, all the news coverage of new medical research that only ever talks about mortality rates and never about quality of life.

The assumption seems to be that if a person is alive, then of course that’s better than being dead…no matter what. Even though when you actually talk to people on the street, the majority say that after a certain point of escalating suffering and loss (that quality of life thing again) they think they’d really rather just go ahead and die.

It was such a relief to me, to hear somebody else say it. And it struck me again, how those who have worked around hospice generally wind up coming to the same conclusion.

Dying just isn’t that scary for us anymore. We’ve seen it. We’ve been around it a lot. It’s become our familiar and we’ve made our peace with it. We know we’ll be doing it and that’s no longer a problem.

Over time we came to see how dying fits into the grand scheme of things and how, more importantly, it can actually top off a life in a way that rights some of the wrongs that were made. We’ve seen first hand, multiple times, how dying can deepen the beauty of a life, spread that beauty around to others, and even leave that beauty behind as a legacy of good that lasts a very, very long time.

Unlike a lot of people who say they know they’re going to die, we REALLY know it, and the knowledge has largely freed us from the constant, underlying fear that people usually don’t even realize they’re living with all the time.

What IS still scary though, even to us, is all the possible wrong choices around dying that are available in today’s world, choices that we know can make dying a lot harder, make the difficult parts of it even worse than they already are.

They’re choices that are proliferating at a blinding speed, too, that are being pursued, promoted, and paid for by that same deep, unconscious fear of dying that’s basically running everything at this point. Our medical institutions and research facilities, our public health policies, our hospitals and doctor groups, our politicians, and our insurance companies have all evolved around this one, central terror of dying to the point where mortality rates have become the key measure by which everything else is judged.

Dying…and desperately avoiding it…has long since gobbled up the majority share.

There are a few people scattered around who, like Dear Friend and I, can see this, and some of them are even people in high places with a lot of influence. Some of them watch the teetering tottering mess with the same dismay that we feel, while others rub their hands together with glee, jump into the chaos, and do what they can to further, then capitalize, on all the fear.

It’s a mess. It reminds me of that classic scene sequence from the movie Titanic, where the iceberg has been hit, the ship is half sunk, and her decks have finally collapsed into a chaotic, milling scene of abject human terror and despair.

It’s quite grim. The movie makers did a good job there.

And then…and then. They do something magical. The camera abruptly pulls back from the closeup coverage of all the chaos and noise, moving to a more distant, mid-range kind of shot from up in the sky and the noise and chaos are instantly reduced. We can still hear the screaming but it’s now far away and less disturbing. The ship, in all it’s eerie, glowing destruction is much smaller now, it doesn’t overwhelm us anymore, framed as it is by a huge sweep of dark, silent ocean that somehow manages to contain and quiet it all.

It’s true. A larger perspective always helps.

But the magic isn’t over yet. The camera suddenly pulls back again, to an even farther point up in the sky, a place so high that we can now see not only the vast ocean containing the tiny ship, but the vast night sky containing the vast ocean that contains the tiny ship.

From that height we can’t hear anything anymore. Not a single visual or auditory detail of the tragedy is left and it’s a relief to be removed from it like that. To be offered a perspective, a scope of time and place, so vast that it easily contains and cradles even that much suffering.

I think about it a lot, why spending time in the dying world helped to alleviate my own fear of it, and I think it’s because this same kind of thing happened. Somehow, by being there with them—each rare and beautiful dying person—by laying my own hands on their quivering bodies and fears and dreams, it made the camera inside my eyes magically pull back, too. Little by little, day after day, mostly to a midrange place where I could still hear and see all the suffering, only surrounded by a great stillness.

But then every once in a while, for some reason that I still don’t understand, (probably love come to think of it…love can do a real number on perception) my eyes would pull back farther than that, out to a place full of twinkling stars and deep time. And in those moments the people I was looking at, the homes I was working in, would fall away into profound silence while everything started to glow.

The wasting body beneath my hands, the faces around me crumpling in pain or anger or grief, all the dying room litter of soiled wipes and used commodes, of sweaty, wrinkled clothing, ice chips, and pill cups, would transform into something that was simultaneously exquisite and heartbreaking—as if everything, all of us, were turning into a giant constellation of stars that were just hanging there, glowing and guiding, in some other kind of vast but invisible night sky.

Although no. Not turning into. It wasn’t so much like we were becoming a constellation of stars. It was more like that’s what we’d always been but then we forgot, consumed as we are most of the time by the engaging, delightful, overwhelming barrage of all life’s little details.

And for those few luminous moments, I’d stand gazing around me slack-jawed and wide-eyed, my hands frozen in whatever task they’d been doing, my breath suspended with the wonder of what I was seeing.

And then whatever was causing it to happen would change and the camera in my eyes would zoom back into mid-range again, the glowing would disappear, the noise would resume, and I’d be able to move again.

Then later, when I’d leave the dying rooms and walk back into the noisy, chaotic world of regular living, my eyes would zoom back into close range again which, frankly, is where they are most of the time. I’m usually just as overwhelmed by details as the next person.

But even though those strange, glowing moments were brief I can still remember them vividly. I can return to them and touch them, over and over again, whenever I need to. Those seconds of looking at the world from somewhere farther away and higher up, from a place where every ordinary, everyday, stinky, crumpled, decaying thing suddenly looked like a miracle and a gift.

And just remembering it, I’m surprised all over again each time. Overcome. It makes me fall head over heels in love with life yet again because somehow I still keep forgetting just how BIG this all is. Big enough to tenderly hold not only the nubile and lovely, but the terrified and aching as well.

Big enough to contain even dying. In the end it all really is just a blink. A beautiful, hard slogging, transcendent, soul crushing, miraculous, grief filled, fascinating, bewildering, breathtaking, fragile, prostrating gift of a blink.

Thank God it eventually ends. Who could take this kind of fabulous beating forever?

I’m still here. Updates on wildfire smoke, a hospice patient in the family, and garden things.

Posted by Dia in Living and Dying and tagged with dying, garden, healthcare, Hospice, Life, Relationships, Talking about dying, wildfires September 23, 2012

Readers, forgive me for I have sinned. It’s been two and a half weeks since my last blog post…which is a first. Maybe it’s a sign that my life really has been just as busy as it feels but still, excuses are boring so I’ll just leave it at this:

Hello and I’m glad to be back.

Updates:

Mon Pere: I wrote a blog post about my father-in-law’s unique dance with aging a while back (see Elders and the Strange Gravitational Effect of Final Mystery) and since then his spiral has tightened. He was admitted into hospice care a couple of weeks ago and, as so often happens, his symptoms have greatly improved since then. Finally…relief.

It was interesting watching him work his way through all the many and powerful misunderstandings that still exist about hospice in the minds of most people. He was very reluctant to take the step because, as he said, “I just don’t feel like I’m dying yet.”

And rightly so. He’s not. He’s still very much alive…and he will be until those final days or hours when his body begins it’s final, dramatic shut-down sequence. Until then, he will not…I repeat NOT…be dying. He’ll be living with a terminal illness which is not only a completely different thing from dying, it’s where hospice care really shines.

So far the hospice staff (along with family members) have managed to get his escalating pain…previously managed separately and inefficiently by three unrelated doctors in three different far-flung offices…back under control. His medications have been consolidated, coordinated, and increased enough to actually do the job. A nurse visits him regularly at home so he no longer has to make an appointment (then wait a week with out-of-control pain before having to drag himself down to whichever doctors’ office is involved.)

After months of debilitating pain he’s been able to finally return to his normal cheerfulness…to doing the kinds of things that he loves. It’s a transformation we’re all profoundly grateful for.

The hospice he’s with also brought equipment and aid into the house that’s making things a lot easier for him…from getting out of bed, to going to the bathroom, to getting around the house and farther, to taking showers comfortably and safely. He’s looked at me a couple of times in wide-eyed wonder and mentioned what a gift it is–that it’s all paid for through Medicare.

“It’s free,” he whispers, not quite believing that this help he’s needed so desperately–that’s allowed him to finally stop thinking grim and drastic thoughts and happily return to everything he still loves and longs for–is his for the asking.

I think it’s hard for all of us to believe right now, that there exists this one small part of our tortured healthcare system that’s actually delivering what we all want it to; relief and a better life. And saving money to boot.

I just wish everyone understood that more.

The Wildfire Smoke: It’s awful. It’s like hell. Brimstone shit. I got up the other morning, looked out the front door, and this is what the sun looked like:

Seriously. No photo shopping. Everyone is a smoker these days.

Air quality has been in the dangerous zone for a couple of days here but it’s far worse up in the mountains near the fires. On an air-quality scale from green to red, the town of Salmon, Idaho’s air is rated purple…beyond red. The mayor just had surgical masks handed out to everyone in town and yet still…the fires are likely to rage until the snows come to put them out sometime in late fall.

Prayers for early snow in the Northwest this year are currently being solicited. You can just send them up into the air where hopefully the jet stream will blow them into a smoke plume.

And last but not least…

The Garden: Harvesting mode. Roughly forty jars of pickles canned so far (halfway through), twenty quarts of frozen green beans, a shitload of grated zucchini both frozen and dried, pickled peaches, sun dried tomatoes, a lot of blanched and frozen turnip greens, and dehydrated elderberries coming out our ears. (Everyone is getting elderberry brandy for the holidays this year. Good flu fighter.) Oh yeah. And winter squash. Lots of winter squash. And tomatoes, basil, corn, potatoes, peppers, beets, and eggplants waiting in the wings.

It’s been a good year in the backyard. Gratitude all around.

Spontaneous Hospice Appears For A Pod of Pilot Whales

Posted by Dia in Living and Dying and tagged with animals, Hospice, Life, Living and Dying, Relationships, Talking about dying September 2, 2012

(Photo of Ed Lippisch by Eric Hasert/TCPalm.com September 2, 2012)

When working with hospice I often had people tell me, “Oh, I could never do that,” and I was never quite sure how to answer them. Because while on the one hand I could see they were sincere, on the other I knew they were wrong.

Of course they could help care for someone who’s dying. Bathing and toileting are not rocket science.

A more compelling reason is the fact that compassion, empathy, and the desire to alleviate each other’s suffering is an essential part of human nature. Sure, you don’t think you can, you don’t want to, you’re scared of it, and you may even feel nauseous at the thought. But then in the blink of an eye…boom…it’s your loved one who’s lying there so achingly vulnerable and suddenly, not only can you do it, you find doing it totally transforms you.

Never underestimate the power of your own heart.

Here’s a great example of a lot of people discovering over the course of a single day that dying is simply no barrier to loving and caring. A pod of twenty-two pilot whales beached themselves yesterday along the south Florida coastline and, except for five babies young enough to transport and rehabilitate, the rest wound up dying there.

No one knows why they beached really, it was one of those mysterious whale things, but evidently hundreds of people showed up to help. From the article on Foxnews.com:

“TCPalm.com reports that hundreds of residents came to the beach to assist with the rescue, helping the animals turn upright so they could breathe better. Volunteers covered the whales with moist towels and poured water over them. Red Cross volunteers helped ensure that volunteers stayed hydrated in the hot sun.

“I think that people want to help animals,” said Jacqui Thurlow-Lippisth, a Harbor Branch volunteer who worked with others to tend to juveniles in a shaded inflatable pool. “Especially whales and dolphins, because they are our counterparts in the seas. They’re mammals, they’re intelligent, they’re social. They’re a lot like us.”

Still, there was a sad undercurrent to the efforts, with rescuers aware that most of the whales were dying.”

I’m willing to bet that, if they’d been asked beforehand, most of the people on the beach that day would have also claimed that working with hospice was something they could never do. And yet there they were anyway, tending to a pod of strangers whom they knew full well were dying and yet couldn’t bear to leave to do it alone.

Of course we can all do that kind of work. In fact sometimes, it can be a lot harder not to.

Dead Bodies Need Love, Too

Posted by Dia in Living and Dying and tagged with Beauty, bodies, death, Grieving, Hospice, Life, Relationships, Respect, Talking about dying April 12, 2012

…only I think more for our sake than theirs.

In the last week I had two different friends tell me stories about the death of a close family member and the extraordinary experience they had with the body afterwards. In both cases the body was handled in a way that’s unusual by American standards, yet both women told me (with deep conviction) that it made all the difference in helping them cope with the loss.

The first is a friend who’s older brother died last year of a sudden heart attack in his early sixties. He lived and died in a different kind of community in the midwest where a lot of people practice a spiritual discipline with deep roots in the Indian Vedic tradition. Naturally, his cremation was attended with some of the chanting and ritual derived from that part of the world. It involved an open casket viewing in a small room within the crematorium following the funeral itself.

The ceremony was beautiful, heart wrenching, and mesmerizing to watch. My friend had a small video that was given to family members, and she shared it with me.

Only the most intimate friends and family members were allowed to attend. Once everyone was seated a woman, who’d evidently spent a number of years in India learning how to do it, gave a brief explanation of the ceremony and then began singing what had to be one of the most beautiful, soothing, dynamic songs I’ve ever heard. The words were in Sanskrit so I couldn’t understand any of it, but the melody, repetition, and deep resonance of the woman’s voice was like being cradled in strong arms.

All of the (many, many, many) flowers from the funeral had been brought into the room and two women were busy in a corner stripping all the petals and placing them into a basket near the head of the casket. As the main woman sang that unearthly song, everyone in the room stood up and began to file past the body in a circle, picking up a handful of petals out of the basket each time they passed and sprinkling them over him as they whispered their final good-byes.

At first I was just struck by the surprising beauty of the whole idea. But then, as I watched his white face…his entire body…. vanishing beneath the deepening layers of soft, tender flower petals, I got it. How much kinder and gentler this was, how much truer to both the profound love and profound loss of the people in that room, to bury him in flowers rather than dirt. It took my breath away.

His mother nearly collapsed her first time around, under the unbearable weight of her grief. But it seemed to get easier for her after that. My friend told me that more than anyone else, the ceremony helped her mother come to grips with the loss. Neither Friend nor any of her other family members actually lived in that community. They’d all dropped their lives to travel from across the country, stunned and stricken. Friend confided that initially she, herself, was reluctant to view his body, to see him like that. She wanted to remember him as he was. But then somehow as she watched him disappear beneath the flowers, the pain and shock of his death was transformed into something else. Something more manageable. Closure, she said, and her eyes looked unutterably grateful and sad.

Eventually, they all went down to the furnace and, together, rolled his body in. But by then they were ready to let him go…which I realized was the ceremony’s intended gift.

My other friend’s loss happened at the other extreme. She lost her elderly mother after a decade of slow, horrendous decline. In fact, her slide had taken so long that when she finally…finally!…began actively dying it was hard to get her doctor to believe it. In the end she was only transferred over to hospice care a scant three days before she died and this made my other friend sad. She would have liked the extra time necessary for everyone to gather and say their good-byes, to turn their familial head downward toward the birthing canal, preparing for their transition into the next world without her.

Then she told me how they didn’t call the funeral home right away, to come and collect her mother’s body afterwards. Instead they kept her at home for a night so she and her daughter could sleep beside the bed, one on each side, loving it through the first long, dark hours of its new state. They called in the morning and watched her taken away in the brighter light of day. My friend shared that, by then, she was ready to let her go and I recognized that closure thing again. That elusive, emotional line we all have to track down inside ourselves and cross before we get to begin our ascent back up the other side.

In both these stories I was struck by the double loss we experience with the death of a loved one…how we lose both their them-ness AND their body…and how important it can be to separate the two and honor them both. Not only as a final gesture of respect for our departed, but for our own healing as well.

first photograph: Cherry Blossom at Washington Memorial by porbital

second photograph: A Study in Pink by Maggie Smith