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

Part VI: Advance Directives: Mine

Posted by Dia in Advance Directives and tagged with Advance directives, courage, Depression, health, Hospice, Life, medical, Relationships, Talking about dying February 11, 2012

(Continued from Part V: Advance Directives: Best To Wish Carefully With A Genie)

In this post I wanted to share a smattering of specific thoughts and choices coming up for me as I fill out my own advance directive. I wanted to do this just in case 1) someone might benefit from an example, and 2) anyone reading this may somehow, someday be involved in my care.

Just kidding.

(Not really.)

But before I start down that road I want to remind everyone that whatever I say here is a personal thing. It’s a reflection of me and what I’d like to see happen with my care. It’s not what I think anybody else should do.

When I was working with hospice my first job in any home was to find out what the people who lived there valued, believed in, stood for, and loved…and then work to support them from that foundation. I did this because the dying journey is pretty turbulent and, for the most part, people need to harness the emotional and spiritual strength they’ve already established, not try and develop something new. It’s almost always a bad idea to change boats in the middle of rough water.

Jared Alexander on Hazard Creek in Idaho

Any boat is better than being dumped out and beaten against the rocks for the duration of the journey. That’s why I always tried, as best I could, to hang my own beliefs and personal preferences on a hook outside the door.

This post is only about the things hanging on my hook.

And now, specifics.

Here’s one of the most valuable directions we’ve come across so far: Fill this thing out based on what choices we’d want made for us right now. I’ve always thought of an advance directive as something that would come into play…oh…years and years from now. Like when I’m eighty-three and dying of skin cancer from all the second-degree sunburns I sustained during my haole childhood years in Hawaii, for instance.

But no. Turns out I need to think more immediately. Like for the next five years (after which I’ll review and update my directive for the following five years, and so on.) Which leaves me facing the question: If my life was threatened right now, at fifty-three years old, would I want more life sustaining treatment than I would want at a terminally ill eighty-three? In other words, do I want more aggressive medical intervention? Will I accept more risk?

I suspect the majority of people would say yes at my age, however for me it’s a little more complicated. Because I’ve already been fighting the good fight to survive depression for two decades, my troops are on the depleted side and I’m a little battle-weary. My basic will to live has taken a considerable beating and I don’t have the reserves I once did. Just the idea of having to mount yet another massive resistance in a brand new war is exhausting.

It’s not that I want to die. I really don’t. I haven’t been in that phase of the illness for a long, long time now. But depression years are like dog years…you live more of them in the same period of time…so fifty-three years probably seems longer to me than it would to the average, healthy person my age. To me, I’ve already lived a really long, great, adventurous life. Everything from here is just icing on the cake.

So what does this mean? Well, as of today (of course things can always change which is why I’ll continue to review and update this thing regularly) but as of today, if I was mortally injured or ill and teetering on the brink of infinity, and if a possible recovery was going to mean a long, hard slog just to get back to a state of health equal to or less than what I have right now, then I’d rather take a pass on any life sustaining measures.

Please kiss me and let me go, my darlings.

Of course I’m not sure if the medical personnel involved would either agree or cooperate with that at my age…at least right away. In fact, I’m pretty sure that in an emergency situation I’d still wind up on life support temporarily. But then that’s exactly why I’m filling out this document right? So that the hubster and/or the kids would be able to explain to them first, that I’m completely sincere about not wanting to be “saved no matter what,” and second, why I’m sincere, and that way eventually…gently and with everyone on board…they could remove me from life support.

Like I said, this stuff winds up being totally unique for each person doing it. I suppose the main dictum for filling out an advance directive is, Filler Outer: Know Thyself.

A couple of other scale-tippers I discovered so far concern the issues of being a burden and/or a catastrophic financial cost. I saw some tragic examples in hospice of how the drawn-out dying process of one spouse can not only bankrupt the surviving other, it can cripple their bodies and/or minds as well. Occasionally, that’s just the luck of the draw and in those cases…oh well. I can always stop eating if I feel that strongly about it (and can still think.) But at other times it happens because of medical intervention and in that case…I don’t want to do that to him. I DO NOT want to. It would suck all the meaning and happiness right out of any additional life I gained if it stripped or destroyed the hubster in the process.

At this point I should mention that the advance directives we’re working with don’t offer assisted suicide as an option. They can’t. It’s not legal here in Idaho. (I wonder if advance directives in Oregon and Washington include something along those lines?) Locally, we’re only talking abut whether we want to accept or refuse “life-sustaining treatment” in extremis (from CPR to major surgeries to artificial nutrition and hydration to kidney dialysis and breathing machines…all of which can be big contributors to the election campaign of financial catastrophe BTW.) So…no. Not really. Thank you.

Pass.

So, these are just a couple of examples of what we’re considering as we move through the documents. It’s a lot more than just checking off box #1, #2, or #3. And while I realize it might sounds pretty grim, in reality it feels surprisingly freeing to just face it. Like these are big, unknown fears lurking just under the surface anyway, unconsciously sapping our focus and creating unease, so why not just haul them up out of the water where we can finally get a good look at them? So far we’re finding that under the bright light of day, talking about these things isn’t horrible or morbid at all. On the contrary, it’s a relief. While it’s definitely emotional, it’s emotional in a kinder, braver way. Not bad, really.

Well, this post has gotten too long. The hubster and I are having our second go with the advance directives this weekend so I’ll try and post more about how it’s going next week.

(Next: Part VII: Advance Directives: Ours)

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.

http://youtu.be/hz65AOjabtM

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

Blip Two From The Book: A Curious Cure

Posted by Dia in Living and Dying and tagged with Gratitude, Happiness, Hospice, Life, Talking about dying, Writing December 2, 2011

(Still tied up with the class. Here’s more filler until I have time to write real posts.)

“11/25/04

Thanksgiving! I’ve got half an hour to write until the turkey goes in and true bedlam begins.

I seem to be spending most of my time with Janice these days reassuring her that, Yes. Of course. Just like everyone else who’s ever lived from the dawn of time, she, too, is going to die. She’s survived so many things, so many times now, it’s gotten ridiculous and she’s starting to battle horrifying visions of immortality. I can’t help but laugh, yet feel a wave of compassion at the same time.

Whenever she starts moaning about it I point out every sign of decline I can think of, and when I hit on something that resonates her eyes light up with hope. Yesterday, we talked about two things that have to take place before a person can finally go. One is advanced disease in the body and the other is a surrender of sorts; a person gradually lets go of the drive to live, the one that makes them get up day after day. I’ve seen signs of this in Janice lately. Since she moved to the nursing home she sleeps a lot of the time and rarely participates in any activities. She told me yesterday there are times when she doesn’t want to eat and she even said she feels “dead” inside most of the time now, which is, of course, a classic description of the depression she doesn’t believe in and refuses to treat.

So, casting about for some way to cheer her up I mentioned, “Y’know, Janice, those things might be a sign that you’re finally surrendering.” She perked right up.

“Really? Do you think I’ll die after all?”

God, what a character.

She’s slowly, slowly turning in some kind of invisible womb, her head shifting gradually downward toward the birth canal, preparing for her journey through the passage that connects this world to whatever comes next. Regular activities are losing their grip and she’s starting to drift, turning increasingly to the doorway of sleep and its other dimensions. She tells me her daughter keeps encouraging her to take part in the facility’s activities, that she would be happier if she did.

But Janice looks at me, distraught, and says, “She just doesn’t understand. I can’t. I don’t feel good enough.”

It would be so hard to be ready to go, to long for it, and still be stuck here. Day after day. Year after year, dealing with constant pain and constant loss and constantly diminishing ability. It’s so weird—how some people can want so desperately to live but die anyway, and how others seem to get trapped. Wouldn’t it be great if there was some kind of cosmic barter system set up where we could trade final time with one another?

“I’ll give you three of my unwanted years for your quickie.”

“Done!”

I hope I don’t die of congestive heart failure or M.S. or Alzheimer’s, something long and protracted. Please God, can I have cancer or something else shorter? Not a heart attack or a car crash though…I’d like time to say my good-byes, to let Cal and Lorin and McKenna know how much I love them. It would be unbearable to leave without being able to tell them one last time.

After we talked I drove Janice over to the bank, and while we were sitting in the drive-through she spotted a Dollar Store across the parking lot. Boy, did her eyes light up! I asked if she wanted to go in and she grew more excited than I’ve seen her in months. She looked…dare I say it? Happy.

(Everyone says that, during dying, hearing is the last thing to go. But watching Janice yesterday I couldn’t help but wonder if perhaps, with women, it’s really our love of a great bargain.)

She couldn’t shop for very long, of course, as it was a big store with a lot of stuff. But she stubbornly managed to drag herself…doubled over her walker and sucking strangled huffs of oxygen in a way that alarmed everyone within hearing—up and down a couple of aisles before grabbing some crackers and gasping that she was ready to go. By the time I wrestled her back into the car she looked bloodless, ghastly, and absolutely euphoric.

“That…was so…much…fun!” She wheezed and gazed up at me with grateful eyes from where she’d slumped to the bottom of the seat. “I really…enjoyed…that!”

She so delights me. This Thanksgiving I’m grateful I took Janice to the dollar store.”

copyright Dia Osborn 2011

Do’s and Don’ts Around People Who Are Wounded And Reeling

Posted by Dia in Living and Dying and tagged with Grieving, Hospice, Life, Relationships, Talking about dying November 5, 2011

L’Absinthe by Edgar Degas

I was thumbing through the journal I kept during the hospice years and came across this entry: [Identifiers have been changed BTW.]

“Gertie was visibly shaken yesterday. Her mom’s youngest brother, aged 94, died this past weekend and, as she stared down at the coffee table she told me, “I’m afraid she’ll go now, too. She’s the last one you know.” Grammy’s appetite has been off and Gertie doesn’t think she’s eating enough to survive.

She’s not.

All the other times when Grammy was going through one of her diminished-appetite spells, Gertie would worry and I would try to gently explain that loss of appetite is natural toward the end. But she always acknowledged and dismissed the fact simultaneously.

The truth is she’s just not ready to lose her mom and I’m now beginning to suspect she never will be. Watching her yesterday—the way she stared off into nothingness as she spoke, eyes turned inward, searching and frightened—I wondered how long she’ll survive herself, once her mother is gone. I even wondered if she’d go first. [Gertie was 83 at the time.] For such a strong, stubborn, tenacious woman she is remarkably fragile underneath it all.

And quite ill herself.

So yesterday I said nothing. Didn’t ask her, “Are you ready for this?” Or say, “You know Gertie, she may be getting ready to go now.” Of course she knows. Shock is already starting to creep in, an early mist rising to help shield her from the unbearable loss lying just ahead. Instead I just sat there, as still as I could. Quiet. Listening. Trying to catch and contain as many of her scattering pieces as I could.

I didn’t want to move or breathe or do anything to disturb the tendrils of mist gathering around her. She is so achingly delicate.”

As I read it all came back to me in a rush; how grieving people (and those who are catastrophically ill or dying) are sacred. The wounding and shock caused by any kind of profound loss makes a person vulnerable; and a society’s traditional job is to close ranks around them, shielding them until they have a chance to stop reeling and reorient. To get through the worst of it and find their footing again.

In older times this understanding of the sacredness of those in deep grief was fairly common, but I think we may have grown a little fuzzy about it since then.

Although…I do think most people still feel this sacredness instinctively. I often see it in the awkward pause that happens after someone confides they’ve lost a loved one, or that they have a catastrophic illness. The person receiving the news is usually aware that something huge just fell out of the sky right in front of them, but they frequently appear confused as to what they’re supposed to do about it.

So even though I frequently fail to follow these myself (they’re appropriate…not easy) here are a few of the Do’s and Don’ts about how to interact with a person who, through no fault of their own, has become temporarily sacred:

The DO’s:

1) Do no harm. The disorientation of the deeply wounded is the emotional equivalent of a compromised immune system. Even if they try joking about it or brushing it off as embarrassing, remember that their shields have taken a hit and are not functioning properly. Be gentler, be kinder, be slower, be quieter.

2) Do acknowledge their wounding. Go ahead and be silent for a moment, then look at them (really look at them…don’t shuffle your feet and look at anything else but) and say I’m sorry. Then be quiet again. That’s it. This is the traditional ceremonial acknowledgement of wounding in our culture and, when genuine, it’s enough. Even if it’s been years since their loss took place, it’s still okay to say this. You’d be amazed how long some wounds can last.

3) Do follow their lead. If they feel like talking about it and you have time, then listen. (Listening is actually one of the greatest gifts you can give. People usually need to tell the story of what happened, or is happening, multiple times in order to coax events out of the weird, limbo world of shock and back into practical reality where they can harness and deal with it.)

On the other hand, if they don’t want to talk about it, then it’s okay to let it go. They don’t have to.

And if, as is often the case, they don’t know what to say and stumble around awkwardly searching for words, then just be quiet and patient while they figure it out. Let them know you’re fine with awkward. Wounded people are bewildered and need extra time. Giving it to them willingly is like encircling them with a protective charm.

Which leads us to the final Do:

4) Do be willing to be silent. Sometimes words just aren’t big enough and, in that case, compassionate silence says everything necessary.

Then there are The DON’Ts:

1) Don’t give advice unless specifically asked. Everyone has to find their own way through this one.

2) Don’t abandon or ignore them. Even if you feel awkward or uncertain yourself, being willing to stay anyway is worth it’s weight in gold. Wounded people already feel a little disembodied and unconnected. Ignoring them could make this experience chronic or permanent.

3) But Don’t rub their noses in it either. Everyone grapples with grief and loss differently and if they prefer to deal with their emotions privately, then respect their ability to know what they need most.

4) And finally, Don’t try to save them from their task. You can’t…and it’s not necessary anyway. Wounded people are vulnerable, not incompetent. Believe in them. The journey of illness and loss is hard but it can be strangely deepening, too, and those who navigate it with courage and grace enrich us all. It’s more than worth our while to give them whatever help they need.

copyright Dia Osborn 2011

Sometimes the small picture IS the big picture.

Posted by Dia in Living and Dying and tagged with 9/11, Gratitude, Hospice, Life, Miracles, Talking about dying October 18, 2011

Actually, most of the time it is. But it’s easy to forget.

There’s nothing quite like the reality (or threat) of dying to help clear up any misunderstanding on this point. I saw that a lot. In almost six years of working with hospice I never once saw a person at the end of their life still wishing they could meet a celebrity. Or win the lottery. Or grab fifteen minutes of fame.

You know what they did long for? (Besides wishing they didn’t have to die of course.) To see their child or friend one last time. To make sure their spouse or partner knew…really knew…how much they loved them. To still be a part of the circle. To be in their own home, surrounded by their own things, and cared for by people they knew they could trust.

It hit me every time, how all the events that were happening in the big wide world…things that just a little while ago had seemed so huge, overwhelming, and important to them…telescoped down to the tiny, the few, and the essential. It was a revolutionary insight. I’d somehow completely missed this lesson before; that the small things ARE the big things.

Something reminded me of it again this morning. A couple of YouTube videos have been hanging around my inbox for quite a while now. They’re both on the long side, ten minutes or so, and…really…who has time for that shit? I can’t get to all the real stuff that needs doing. The only reason I didn’t delete them outright was because they were from people who might ask if I’d watched them. And I suck at lying.

I’m pretty good at procrastination though.

But this morning the guilt set in so I watched them both. And, lo and behold, what used to happen in hospice happened again. I had the weirdest sensation of the world turning inside out (where big things get small and small things grow huge) and then I suddenly remembered what’s really important. Yes, the broader world is something of a mess right now, but there are always plenty of little things going on in it that are perfect and beautiful and right. And if I just remember that, then all the chaos in the universe can’t stop me from being grateful for my life, or for the many small but essential miracles that fill it.

So…if you ever have some extra time:

The first video is the story of the spontaneous boat lift that happened on 9/11, when a random flotilla of boats materialized out of nowhere to evacuate the hundreds of thousands of people trapped in lower Manhattan that morning. (If you only have time for one video, make it this one. It helps heal something that’s still, after a decade, surprisingly raw.)

The other video is a David Letterman segment about a young woman and her horse who got between a charging grizzly bear and the boy it was about to kill, and actually charged the bear. Twice. They saved the child’s life. It’ll blow you away.

Editor’s note: The original embedded video was taken private so I’m supplying a link to the interview which has been posted on Youtube instead.

http://youtu.be/bX_c4YbeNmY

copyright Dia Osborn 2011

How Thinking About Dying Is Helping Me Navigate Life

Posted by Dia in Living and Dying and tagged with Depression, Doctors, emotional endurance, health, Hospice, Life, Mammograms, Talking about dying September 23, 2011

Rudder

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

1) how I’d like to die, and

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

copyright Dia Osborn 2011

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

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

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

A Childhood Portrait Reminiscent of Alice in Wonderland and A Question Of Emotional Endurance

Posted by Dia in Living and Dying and tagged with Blogging, Endurance, Family, Hospice, Life, Living and Dying, my mom, Pharmaceuticals, photography, Talking about dying, Writing September 12, 2011

I’m the baby, fair budding to become a sunflower, second from left. The young Queen Mother to my right is my only sister, while the boy doing the Winston Churchill imitation to her right is my middle brother. Then there is the Eldest on the far left dignifying the portrait with his expression of Supreme Effort. The youngest among us (who recently discovered this little treasure) was not yet born.

ABOUT WRITING:

LAST WEEK I RAN AWAY TO THE MOUNTAINS, and I think this is the first time I’ve ever missed posting on or around my Friday deadline. Not a first-time I’m proud of or would like to repeat anytime soon. I know there are tools available for scheduling a post to publish even when I’m gone so really, there’s no excuse. (Not that I think it’s a life or death issue but still, the discipline is important for me as a writer. So, note to self: research “scheduled publishing” tool and use it at least once before the end of the month.)

There. Now on to the Easter Portrait.

ABOUT THE PHOTO:

My youngest brother became Guardian of the Box of Old Photos when my mother died a couple years ago and, during the ensuing sifting, has turned up a couple of gems like the one above. We had no idea this thing existed. Indeed, there are a whole series of Easter portraits that he’s uncovered, with a wide variety of outdoor backdrops (let’s play Guess What Military Base We Were Stationed At!), but this one clearly takes the cake.

The photo is of us but actually speaks volumes about my mother. She was, like most women of her generation, trying to keep up with Jackie-O and, other than at Easter, we were always dressed in jeans and t-shirts, a fact that makes this snapshot-of-an-age even more absurd and delightful.

Ultimately though, I think it’s the accident of lighting that makes it most striking–we’re so illuminated it looks surreal, like we slipped down the rabbit hole in a string of held-hands and landed all dressed up in Wonderland.

ABOUT EMOTIONAL ENDURANCE AND THE DYING:

Moving on, I wanted to take a minute to answer a question about my last post. In her comment afterwards, Linda over at Rangewriter asked what I meant by “emotional endurance.” I thought it was a great question and, because emotional endurance is such a vital tool for dealing with difficult challenges of any kind, I wanted to address it in a regular post rather than just in the comment section.

Emotional endurance is just what it sounds like; the ability to endure one’s own emotions. (Obviously, pleasant feelings don’t require much effort. What I’m talking about are the painful ones like sadness, despair, anger, shame, loss, bitterness, guilt, regret, helplessness, etc.) This skill was actually prevalent among the older generations but, during the current, unfolding age of budding-pharmaceutical options, has increasingly fallen into disuse.

And unfortunately, as a treat-and-cure cultural mindset has gradually replaced the older accept-and-endure one, the threshold of discomfort, pain, or uncertainty most people can continue to live and thrive with has fallen considerably. Now…please. I’m not saying medical advances aren’t a miraculous gift and blessing; they are. Anyone who’d want to turn the clock back a century is, in my humble opinion, extreme.

However, there’s also profound value to be had from the old skill of knowing how to contain, endure, and navigate heavy emotions without needing to immediately escape them. And nowhere was this made clearer to me than in the rooms of the dying.

In hospice I saw person after person after person, (all elders BTW,) deal with levels of emotional pain and loss that absolutely staggered me. And, with only a couple exceptions, they ultimately did it without requiring antidepressants or a hastened death. Over the course of their lives these people had somehow learned to navigate huge waves of overwhelm, fear, pain, and sorrow without losing sight of the beauty, love, and value that also populated their end.

I cannot begin to tell you what an eye opener this was for me. I had no clue…no clue…how much stronger we are than I’d ever imagined, and if I could only pass on one bit of insight from all the wisdom I learned from the dying, that would be it. Allow me say it one more time, because that’s just how important this is:

We are far, far, FAR stronger than most of us currently understand or believe. By a multiple of thousands. I know this, I’ve been there, I’ve seen it. And I’m not talking about the rare hero, warrior, or saint, either. (Although they are totally amazing. Whew…) No. I’m talking about the rest of us. All the ordinary, everyday, getting-along people like you and me that weren’t created for greatness; those of us who just want to raise our families, work a good job, have some hope, and live a decent life. Us.

What I’d love to see is a cultural return to the recognition and development of this skill for emotional endurance, all the while keeping the growing arsenal of available treatments and interventions ready as back-up, just in case. Y’know…for those rarer yet dangerous periods when life erupts into something that really is too much, too hard, too destructive, unendurable.

Can you imagine what we’d be capable of, what our lives would be like, what our world could become, with the power of inner endurance and medical relief at our disposal?

My Writing: Sometimes I Hate It, Sometimes I Love It

Posted by Dia in Blogging, Writing and tagged with Blogging, Hospice, Living and Dying, writer's ego, Writing August 19, 2011

I try not to read my writing at night because I discovered years ago that if I do, I’ll hate it. Always. When I’m tired, every word I’ve ever written sounds like shit, and if I make the mistake of reading it too late, I’ll go to sleep feeling like a fraud.

At the other end of the spectrum, in the morning I usually like what I’ve written. And if I’m drinking coffee, I love it. Caffeine does for my writing what pot used to do for my philosophical discussions in adolescence–it lifts it to a level of brilliant insight (which, sadly, rarely survives the chemical letdown afterwards.)

This daily vacillation, while painful, is at least familiar. I know it, I deal with it. I’ve learned how to milk the creative juices that come in the morning and sidestep the mental desert of night.

But I experienced a different kind of downswing this week that caught me unprepared. The Idaho Writer’s Guild here in town sponsored a talk by Lori Wasulchek, an award winning, documentary photographer who just published a moving, exquisite book about the hospice program in Angola State Penitentiary, Louisiana, called Grace Before Dying. (I won’t review it here because the self-critic in my head has informed me I’m not good enough. Just use the link. Pete Brook does it justice.)

She was inspiring. Dedicated. Brilliant and unbelievably hard working. She walked through fire to bring her book to print because she believes in the value of Angola’s hospice program and what it’s doing for the countless men who are living and dying in there. She not only created an uplifting work of art that reaffirmed everything best in us, she touched a lot of lives and helped a lot of people along the way. I left the meeting with her book cradled in my arms, my faith in humanity renewed. I was high as a kite, energized. Hopeful for a better future for us all.

And then, about three hours later (as evening rolled around) my trusty, fragile, writer’s ego collapsed and I crashed. Hard. The inevitable comparisons began and I spent the next twelve, sleepless hours questioning every word I’ve ever written, everything I’ve ever done, and (while I was at it) my entire reason for being. I took the earlier post I’d written about Grace Before Dying down off the blog before anyone besides the spammers who never read anything anyway could find it, and then seriously questioned about whether to just take the whole blog down, too.

God. What a horrible night. My emotions were painfully, ridiculously extreme. The good news is they were so extreme I knew I should wait until morning before doing anything I might regret.

Sure enough, dawn eventually came and, with the help of a little sunlight and caffeine, I regained a more moderate perspective. (Although even coffee couldn’t completely dispel the angst.) After a rational look at my reaction I learned a couple of important things about myself that I need to keep in mind going forward:

1) I’ve secretly wanted to single handedly save the world from its fear of dying.

2) I need to come up with a more realistic goal. (And admit it to myself this time.)

3) I’m not a journalist and it’s counter-productive to compare myself to one, especially one that’s award-winning. I’m a creative writer, and I need to embrace that aptitude and craft my ideas accordingly.

4) I need to stop being such a hermit and spend more time around other writers for the inspiration, insights, and ego-workout I so clearly need.

I think the last one is probably the most important. Writers have to spend so much time alone anyway, and when you couple that with my natural tendency to hole up and hide from the world, I can wind up being pretty isolated. It’s not good for me and it’s certainly not good for my writing. One of the hardest things for me to do…every single time…is accept a good critique and apply its lessons, even though doing so has always done more to improve the quality of my work than anything but the simple discipline of writing every day.

Spending more time with writers (especially those writing on my topic) would also provide excellent practice for dealing with the I Love It/I Hate It pendulum swings created by comparing my work to that of others. I really don’t want to be taken off guard again the way I was this week. I can’t afford it. It’s painful, it’s hazardous to the work I’ve already written, and in all honesty it’s just not the kind of person I want to be. The number of talented, hard working, dedicated writers out there is huge, and I’d really rather learn to harness their achievements as a source of inspiration than seeing them as a reason to quit.

Potential For-Profit Hospice Abuses

Posted by Dia in Living and Dying and tagged with Abuse, End-of-life care, health, Hospice July 22, 2011

I just found this article on Bloomberg: Preparing Americans for Death Lets For-Profit Hospices Neglect End of Life

It talks about a disturbing possibility of abuse by some for-profit national hospice chains in their attempts to maximize profits at the expense of dying patients. I don’t have time to comment on this right now (since I just finished my last post) but suffice it to say I’m glad this is being investigated. Big Money realized there was a profit bonanza coming in end-of-life care back in the early 2000’s and positioned themselves by snapping up all the small hospices they could buy. I felt deeply uneasy at the time because I worried they might start “streamlining” in order to maximize profits.

While things are never as simple as they appear, this seems to bear out at least some of my fears. I hope this doesn’t turn anyone away from seeking hospice care.

One possible answer to the problem is a move to “concurrent care” where a person can receive both curative treatment and end-of-life care simultaneously. I realize that might seem contradictory, but in two studies done by Aetna insurance where terminally ill patients were allowed both ongoing treatment and palliative and hospice care, it turned out access to both programs actually cut emergency room visits by half, and hospital and ICU visits by two thirds. Overall costs dropped by almost 25%. And most importantly, the people in the studies reported much higher levels of satisfaction with their care.

Hospice in Louisiana Prison is Decreasing Levels of Violence

Posted by Dia in Living and Dying and tagged with economics, Hospice, Life, Prison, Relationships, Talking about dying July 22, 2011

Photo from the award-winning photographic documentary Grace Before Dying

What transformed the Louisiana State Penitentiary at Angola, one of the most violent prisons in the South, into “…one of the least violent maximum security institutions in the United States”?

A hospice program.

If you get a chance, check out this website that Linda over at What Comes Next? turned me onto. It’s called Grace Before Dying and is inspiring (which is saying a lot with all the turbulence in the world right now) and is about the photographic documentary by Lori Waselchuk that chronicles the prisoner-run hospice program at Angola State Penitentiary, Louisiana’s maximum-security prison. Evidently, a life sentence in Angola means both life and death. 85% of the roughly 5100 inmates die there and, up until the hospice program was started in 1998, that meant dying alone in the prison hospital. But now they have a hospice ward where the terminally ill inmates are transferred, and once there the dying are tended almost entirely by inmate volunteers who are serving life sentences themselves.

It seems to be this most basic act of simple humanity that’s transforming the prison population…which comes as no surprise to me. Tending the dying in hospice transformed me, too. It transforms everyone who does it. From the website:

“The hospice volunteers’ efforts to create a tone of reverence for the dying and the dead have touched the entire prison population.”

Frankly, the prison system we’ve set up in this country has always puzzled me. I’ve never been able to figure out just what, exactly, we’re trying to accomplish. The focus on isolation and torture (because really, I don’t think you can call what happens in these hell-holes simple punishment) and then release for godsakes, strikes me as short-sighted. It’s like capturing a dog doing damage near a downtown cafe, locking it up in a small cage, systematically brutalizing it for five years, then taking it back to the same sidewalk cafe, telling it to behave, and turning it loose again.

What do we expect? Lassie?

In this country, we’ve coupled justice with revenge and their offspring have been multiplying for years now. Our prison populations have swelled to the point where they’re wreaking havoc with both our public safety and economic stability, (look at what California’s currently dealing with.) Doesn’t it seem like now might be a good time to consider trying something different?

Well, some prisons are. There’s a growing trend to team with animal shelters, allowing inmates to help care for and train abandoned and/or abused dogs. Another program in Mississippi called PACT partners inmates with abused horses. Like hospices in Angola and other prisons, these programs structure relationships for the inmates that cultivate bonding, vulnerability, kindness, responsibility, and empathy, all qualities that naturally deepen our innate humanity.

Like tends to beget like. Cruelty begets cruelty and inhumanity begets inhumanity. If we really want to create a better, safer, kinder world, then we should probably be trying to foster everyone’s humanity, not destroy it. By instituting a hospice program, the prisoners at Angola have been given the opportunity to foster theirs.

Dying is generally regarded as the ultimate destructive force…and it is. I would never argue with that. But what most people don’t understand (yet) is that it also has a profound ability to heal. Everyone acknowledges that a “good death” is important for the person who’s actually dying but it goes much farther than that; a good death is also critical for the well-being of those left behind. A bad death creates scars, the tentacles of which usually spread far and deep through the lives of survivors, and it embeds a terror of the future that eventually infects everything. Everything.

A good death, on the other hand, tends to nourish our compassion, deepen our humanity, expand our understanding of life, and lift us out of that underlying sense of loneliness and individual isolation that defines so much of modern life; all things that ultimately serve to ease this fear of the future rather than aggravate it.

To close I’d like to leave you with this last quote from the website:

“The hospice volunteers must go through a difficult process to bury their own regrets and fears, and unearth their capacity to love. Grace Before Dying looks at how, through hospice, inmates assert and affirm their humanity in an environment designed to isolate and punish.”