Random Hot Tip About Dying #4

Posted by Dia in Living and Dying and tagged with End-of-Life, Good death, Hope, recovery, Talking about dying June 11, 2013

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

Up next:

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

So what contributes to a good death?

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

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

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

Hope: Options In A World Of Growing Antibiotic Resistance

Posted by Dia in Living and Dying and tagged with antibiotic resistance, drug resistant diseases, health, Hope March 13, 2013

Hope in a Prison of Despair by Evelyn De Morgan

I’ve been following the rise of antibiotic resistant diseases (along with viral outbreaks and world touring parasites) since about 2005.

I don’t know why I do this exactly, other than being insatiably curious about these tiny, adaptively brilliant, nearly invisible little companions that outnumber us by magnitudes of trillions and wield a level of power that takes my breath away.

BTW, it’s a power for both ill AND good as we’ll see in a bit, so don’t panic yet.

You may or may not have noticed some of the headlines lately, but first the director of the U.S. Centers for Disease Control and now the U.K.’s Chief Medical Officer have come out publicly to announce that we’re heading over the predicted cliff where antibiotic resistant diseases are concerned.

Antibiotics are losing their effectiveness against a disconcerting array of infections now. Some of those tiny bacterial companions I mentioned earlier? Well, they’ve been very, very industrious and mutated to the point where antibiotics just aren’t slowing them down like they used to. A couple have actually become bullet proof where no antibiotic can touch them.

The language in these bureaucratic announcements is eyebrow raising. There were unusually dramatic words employed like catastrophic and nightmare which, if you don’t follow these things, is kind of the governmental equivalent of tearing hair and screaming from rooftops.

So what does all this mean? Well, if you’re a bacteria, it means the future’s looking very rosy. But if you’re human? Not quite so much.

Picture the world as it looked before the development of penicillin and you start to get an idea of how much our lives have changed since the terror of infections ceased to rule them. Forget about syphilis, tuberculosis, and pneumonia. Once upon a time a splinter or scraped knee could turn fatal if they became badly infected.

Of course things won’t return to exactly the way they were back then. On the good side, antibiotics will continue working to some extent, and on the bad side, we’ve made some of our little bacterial companions a thousand times stronger. But in any case it’s safe to say that infections are going to be a far bigger issue than they have been for the last seventy years.

Such is the nature of shifts in power.

Naturally, the $64,000,000 question on everyone’s lips is What comes next? What do we do about all this? How are we going to treat infections that have achieved semi or complete immunity to antibiotics?

Well, it’s really going to have to be a multi-pronged approach. Just like there’s no one energy source capable of completely replacing oil, there’s unlikely to be one miracle treatment that can replace antibiotics.

(Although bacteriophages…wonderful little viruses that eat bacteria…may finally get a chance to come into their own. But more on that in a minute.)

First, a couple of other possible prongs off the top of my head:

CIRCLING THE WAGONS

Trying to prolong effectiveness for the antibiotics that do still work.

This seems to be the main focus of our beloved bureaucracies. It’s kind of a close-the-barn-doors-after-the-horses-are-gone approach but still vitally important and necessary to buy time. It involves taking dramatic action to try and slow the spread of antibiotic resistant diseases, curb widespread antibiotic abuses, and encourage new antibiotic research. Of course here in the U.S., any such policy that’s actually been approved hasn’t been funded, (ahem…cough, cough) but I guess we deserve that. Our politicians’ divide simply reflects our own.

In any case, we’re effectively leaderless for the time being which is why We The People need to start harnessing some of our famed independence and creativity. Now would be a good time to energetically explore other alternatives in individual, grassroots, and entrepreneurial ways, the leader of which has to be:

PREVENTION

I would like to stick my neck out here and make a few predictions.

1) We’ll see a renewed love affair with stricter hygiene in clinical settings.

Remember when nuns ran the hospitals, how squeaky clean everything was? The metal was shiny, floors were knee-scrubbed, sheets were bleached and ironed, and anyone who didn’t wash their hands had them struck hard and repeatedly with rulers? I predict our tolerance for rulers will return.

2) We’ll all learn the correct way to wash our hands.

Soap will once more be king. We’ll not only start using it every time, we’ll use it liberally and scrub up to the wrists. No more just swiping one’s fingertips under the dribble and then touching every last contaminated surface on our way out the door. (Or worse, not washing one’s hands at all. I predict that people who don’t wash their hands thoroughly will be the future equivalent of 17th century lepers.)

3) We’ll start rethinking just how necessary any surgery or procedure really is.

Without antibiotics to back it up, reluctance to cut ourselves open and stick foreign medical objects inside will skyrocket. I predict fewer boob jobs and face lifts, cesarean sections and knee replacements, as well as a lot more soul searching and research before patients agree to things like stents, bypass surgeries, spinal fusions, etc. It’s estimated that 30% of American healthcare costs are spent on overtreatment. I imagine the risk of fatal bacterial infections could cut into that.

And then there should also come a rising openness to:

OTHER ALTERNATIVE TREATMENT POSSIBILITIES LIKE:

1) Maggot debridement therapy.

Living, disinfected maggots eat mostly dead tissue and, wisely employed, can help clean up a chronic or infected wound in the niftiest of ways. This method fell out of widespread medical use with the advent of penicillin in the 1940’s but it’s recently been making a comeback. It’s currently only used on a limited scale because most people think maggots are gross, but I predict that dying from an infected wound will eventually be viewed as even grosser.

2) Fecal implants. (The use of bacterial white hats against bacterial black hats.)

With success rates reportedly as high as 60-80% against drug resistant C. difficile the use of fecal transplants is already swiftly rising. (The good bacteria in the transplanted healthy feces repopulates the compromised intestinal tract driving out bad bacteria.) There are also early indications that fecal implants may be of benefit for a variety of other serious gastrointestinal complaints and, if so, their value will explode. I predict that Big Pharma will double down on trying to develop and patent some kind of poop pill.

3) Bacteriophage therapy. (The little viruses that could.)

Every bacteria has a hungry little virus or bacteriophage…phage to their friends…that will gobble that specific bacteria right up. (These little guys are viral white hats to be distinguished from viral black hats like flu and cold viruses, etc.)

Bacteriophage therapy is the science of matching the right virus to the right bacterial infection and then turning a bunch of them loose to have their way. Pioneered mostly in Georgia before the fall of the U.S.S.R. the therapy was gaining momentum before the advent of penicillin. (See a trend? Penicillin accidentally killed more than just bacteria.) A handful of dedicated Georgian doctors kept the therapy alive through the decades (a great story btw…these guys are fucking heroes) and currently have the most impressive stockpile of therapeutic viruses around, including a happy little phage for MRSA. As I write this some of our own venture capitalists are working furiously to get the therapy through regulatory hurdles right here in the States.

I predict that professional and public interest will continue to rise in other alternative therapies like these that were previously viewed as too weird or gross or complicated to consider.

And on the individual level there’s already a lot of enthusiasm and interest in possible infection control alternatives coming from:

4) Old home remedies and

5) Traditional medicine from other cultures

But those are a whole other blog post and I’ve already gone on for way too long here.

I guess what I’m mainly trying to say is that, while the dwindling power of antibiotics signals the end of an admittedly halcyon age in medicine, it’s by no means the end of the world. We’ve been battling infections since the dawn of humanity so of course there are other options (a couple of which look like they may be superior to antibiotics for specific infections as in the case of fecal implants for C. diff.) And there are plenty more options still to be explored.

The transition between medical ages won’t be easy of course. We’ve become dependent on antibiotics in a way that makes us pretty vulnerable to their loss. I’m not trying to minimize the real and looming threat to public health that we face.

But neither do I want to climb up on the rooftop to join in screaming and tearing my hair. While grave warnings are absolutely necessary in the current situation, there are other people far better equipped than I am who are already covering that job.

What I’d like to do is try and introduce some hope to the conversation to keep things grounded. I remember my initial response to all this when I first learned about it some years back was that of a deer frozen in the headlight of an approaching train. It took me a while to calm down and figure out that I didn’t have to just stand there and get hit.

That’s when I started my research and, over time, the more I’ve learned the more hope for the future I’ve felt, so I thought I’d share a couple tidbits here in case it might do something like that for you. A little hope can works wonders with a bad case of paralysis.

p.s. These are all articles hyperlinked in the above text. Just thought I’m stick them here again for easier reference.

The Rise of Antibiotic-Resistant Infections

‘We Have a Limited Window of Opportunity’: CDC Warns of Resistance ‘Nightmare’

‘Catastrophic Threat’: UK Government Calls Antibiotic Resistance a ‘Ticking Time Bomb’

Are you ready for a world without antibiotics?

How to wash our hands

Phage Biology and Phage Therapy

Five Major Influences That Help Determine Our Acceptance Or Fear Of Dying and Death

Posted by Dia in Living and Dying and tagged with courage, denial, Easing fear, Hope, Life, Living and Dying, Talking about dying May 2, 2012

Vitruvian Macrocosm

Anyone who’s been following this blog for a while knows that I don’t believe dying and death need to look as terrifying, crippling, or hopeless as they’re so often portrayed in American media and culture. (Dying and death are two completely different things by the way. I wrote about the difference in the post Dying Is Still Alive a while back but it’s important enough to mention again here.) In the U.S. we live in a profoundly death-averse culture that has not only stripped out most of the beauty, grace, and strength involved, it’s taken the innate sadness, loss, and suffering of the dying process and blown them up a hundred times bigger than they already were.

Which is a common function of denial.

I’m deeply concerned by the pervasiveness of this bloated kind of fear. Partly because of the driving role it plays in the unsustainable costs of our health care system, but more because of how much harm it does to people in their everyday lives, a harm that a lot of people don’t even realize is there. Living with the kind of chronic, low grade terror that comes when one doubts they’ll be able to handle dying when it arrives, is very hard on a person’s basic sense of security in life. It’s like trying to enjoy a journey down a magnificent river when you know there’s a Class 5 rapids up ahead somewhere (nobody knows the exact location) that’s gonna beat the shit out of you when you get there because you lack the knowledge and skills to navigate it successfully. Under those circumstances who can relax for very long?

Part of what I’ve wanted to do with this blog is to try and counter some of the negative effects of this pervasive, cultural aversion we have. To try and rebuild…by talking about the particulars of dying in a normal, unafraid kind of way…some awareness of, and confidence in, the native abilities we were all born with that help when the time comes. It’s never been my intention to try and eliminate the fear of dying completely because, frankly, I don’t think that’s wise. Some fear of dying is actually helpful and necessary if we plan to survive for very long as a species.

But I do want to try and ease some of the excess, buried terror I so often glimpse in the back of people’s eyes, to see if I can’t offer something that might help shrink that part of it back down to a size they can live with. Happily. Safely. Confidently. With an abundance of hope and optimism about their own dying time, whenever it comes.

Pipe dream? I honestly don’t think so. There are some practical steps people can take to ease their fear, if they ever want to. What I’d like to do with the next few posts is talk about five of the things that have a big influence on whether a person is more likely to accept or fear dying, and then identify which ones we have some control over, and what we can do to try and change them if need be.

Five Major Influences That Determine Whether We Accept or Fear Dying and Death:

Influence Number One: The quality of our first exposures to dying and death. This includes things like, a) How old we were when we first encountered it, b) How old the person dying was when we lost them, c) How close our relationship was with the person dying, and d) The nature and graphic details of the dying and/or deaths that we witnessed.

Influence Number Two: The attitude towards dying and death of those who taught us about it. If they were afraid of it, we probably learned to fear it, too. If they couldn’t, wouldn’t, or didn’t know how to talk about it, we probably learned that it’s a taboo topic to be feared and avoided. If they were unfamiliar with, but curious about it, we were more likely to feel safe thinking about it and exploring it ourselves. And if they were familiar and at peace with it, then chances are higher that we’d become familiar with it and learn to accept it, too.

Influence Number Three: How much and what kind of knowledge we have about the details of dying and death. The less we know about it, the greater the likelihood of fear due to the unknown factor. However, partial knowledge can be even worse. If we know a lot about the difficult aspects of dying but nothing about the beautiful side, there’s likely to be some additional irrational terror on top of our fear of the remaining unknown. But if we know both the difficult and beautiful details about it, we’re far more likely to harness a courageous view of dying, as well as make a plan for navigating our own when the time comes.

Influence Number Four: Our level of practical familiarity with dying and death. I’m talking about hands-on, in-the-room experience here as versus just philosophical knowledge. An increased familiarity with, and tolerance of, the nitty gritty, physical details involved is usually helpful where easing fear is concerned. But only as long as the quality of the dying and death being experienced is good. When the dying process swings the other way and is out of control, hopeless, violent, or otherwise horrible, then it’s more likely to just confirm our worst fears. A bad death is not a great situation for novices, but of course sometimes that just can’t be helped. See Number One above.

Influence Number Five: What meaning we assign to dying and death. This influence is perhaps the greatest of them all. The meanings we weave are completely unique to each person and will usually be a product of the accumulated experience from the previous four influences. It’s important to remember that this one is constantly evolving, and that it can (and probably will) swing back and forth between a negative and positive view over time. It’s very heavily influenced by the quality of the deaths it’s exposed to (including movie deaths, news stories of deaths, etc.) The greater the frequency of good deaths that we hear about, witness, or participate in, the more positive our meaning about death is likely to become. And vice versa. I believe a person’s aggregate exposure to good deaths vs. bad deaths is the strongest indicator of whether a person will view dying and death in a positive or negative light. I believe this exposure is an even stronger indicator than a person’s religious or philosophical beliefs.

(This is why I feel that striving for a good death might almost be considered a social responsibility. Not only because it’s absolutely in our own best interests to die a good death, but because the legacy of a bad death is so powerful and lingering that it can sometimes harm, cripple, or even destroy the individual lives left in its wake. I’ve seen the influence of both good and bad deaths first hand and I assure you, the difference for survivors is profound.)

In the next post I’d like to discuss how our early exposure to dying and death plays a big role in shaping our view (for better or worse), but how a subsequent brush can shift or change it again. I’ll share a few stories that I think might be interesting.