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


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 upsideand 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

Related articles:

“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.”

Part III: Advance Directives: Forms and Where to Find Them


Continued from Part II: What is an Advance Directive? (Or Why I’ve Been So Confused.)

In this post I plan to go over some of the different kinds of advance directive forms that are out there, a few different options for filing them, and some of the pros and cons of each. However, before I go into the details, here are a couple insights I’ve gained during my research that help keep the the whole idea of advance directives in perspective:

1)  The majority of end-of-life decisions actually take place as a collaboration between doctor, patient, and loved ones without the use of advance care planning tools.  In other words, most of the time doctors, patients and families will work it out themselves, without the need for legal documents or government agencies.  Advance directives should be thought of more as an insurance policy against worst case scenarios, rather than the primary tool to be used for communicating with loved ones and doctors.

The situations that spring to mind where advance directives are most likely to come in handy are: 1) in accidents or other emergency situations where loved ones can’t be immediately located, 2) in cases involving younger people or the disabled, 3) in situations where the elderly don’t have any close family or friends to look after them, 4) when family is confused or in disagreement about our wishes, and 5) in nursing homes and assisted living facilities where staff members can play a role in immediate medical decisions.

Also, it bears noting there are a few sticky situations where state laws are more likely to come into play.  Assisted suicide is at top of the list of course, but a couple of states are also nervous about withholding/withdrawing artificial hydration and nutrition.  Here in Idaho for instance, the legislature recently passed a bill stating that some medical providers do not have to provide any kind of end-of-life care that violates their conscience, and it’s created a fair degree of uneasiness amongst our elders, let me tell you.  However, these cases are the exception, not the rule.  Choice at the end of life is usually an area where official agencies are loathe to meddle in family affairs.

2)  The legal forms, no matter how well written, legally binding, or universally available, aren’t of much use without having accompanying conversations with loved ones and doctors.  The best legal form in the world will never, ever, ever be an adequate substitute for talking about our wishes with our loved ones and doctors.  Ever.

I’m surprised at the number of people I’m talking to who filled out forms once upon time, somewhere, somehow, but are now not sure where they are or even what they say.  I think I understand how it happened.  Early on it was thought that just filling out the legal forms was enough.  If it’s stated and signed, then they have to, right?  Turns out not so much. Because of the complex, living, breathing, constantly changing nature of…well…life itself, we’ve learned that a lot of additional communication is actually required.  That’s where conversations with our medical proxies in particular come in.

NOTE TO SELF:  When choosing who will have my medical power of attorney, don’t just write their name down on the form and file it in a drawer.  Let them know: 1) that I picked them and 2) what I want them to do. Otherwise, they’ll be as clueless as everyone else and look foolish into the bargain.

Really.  Let’s all agree not do that to someone we love, okay?


1)  The State Forms. 

Pros:  State forms are legally recognized by their own state and easily accessible.  In addition, here in Idaho, if we file our advanced directive with the online state registry it will be easily accessible to state-wide medical providers in an emergency because that’s the first place they’ll look for it here.  There’s are also online national registries where these forms can be registered.  (I’ll talk about registries in the next post.)

Cons:  Since the hubster travels a lot, accessibility out of state is a bigger issue for him.  We would definitely need to register him on a national database.  And if his choices include a treatment/refusal of treatment that is controversial in another state, his advanced directive is less likely to be respected. (Although that’s true for any A.D.)  Also, state forms in general tend to be less user-friendly, written more to address the concerns of the political, medical, and legal communities than the patients they’re supposed to serve.  I know on our Idaho forms, we would definitely have to write any additional thoughts and wishes we have separately and then attach them to the file.

WHERE TO FIND THEM:  There are 51 of these suckers out there. (Yep. The District of Columbia has one, too.)  A great place to find your state form is at Caring Connections, a program of the National Hospice and Palliative Care Organization (NHPCO).  When I went to the website myself, along with our Idaho forms I also found helpful tips on how to fill them out as well as a link to our state registry.  The rest of the website is loaded with valuable information and resource links if you want to look around.

2)  FIVE WISHES by Aging With Dignity

This is probably the best known, privately developed advance directive.  It’s most famous for having been endorsed by Mother Teresa of Calcutta.

Pros:  Five Wishes was an early, brave effort at creating an advance directive geared towards addressing what matters to the individual rather than the state, and it provides questions for personal and spiritual issues as well as medical ones.  I actually used Five Wishes as a guide when I had a conversation with my father and his wife about their end-of-life choices a few years back and it was enormously helpful.  We all learned a lot about each other and ourselves.  It currently “substantially meets” the statutory requirements of 42 states including Idaho, so this form is another option for us.  The form is viewable online and is available in 26 languages.  They also offer a pediatric form.

Cons:  This form doesn’t meet the statutory requirements of eight states.  We also discussed this one at a hospice inservice once (eight years ago now) and the general consensus was that it would probably be best to use Five Wishes to communicate more nuanced choices with loved ones, and then fill out the state forms to satisfy the legal entities.  The form costs $5.00 but, as I mentioned above, it’s viewable online so you can look it over before you have to decide.  Also, the proceeds go to support Aging with Dignity, a non-profit (and very worthy) organization.

Editor’s note:  Paul Malley from Aging With Dignity was kind enough to contact me with important information regarding the above-mentioned recalcitrant eight states:

You mention in the pro-con section that Five Wishes does not meet the legal requirements of 8 states, which is true. I should point out that these are states that require its residents to jump through additional hoops, such as using a specific form, a mandatory disclosure notice, etc. We have many users in non-Five Wishes states and we know of no health care provider anywhere who has refused to honor Five Wishes. You should also know, if you don’t, that the federal law requires health care providers to honor ANY expression of your wishes.

I would also add that since writing this post I’ve learns things that changed my mind, and I now think Five Wishes would be a better choice than a state’s advanced directive.

I haven’t heard back yet whether or not the Five Wishes form can be registered with one of the online registries.  I’ll update this as soon as I get an answer.

UPDATE:  This form can be used with at least one national online registry.

WHERE TO FIND IT:  the Five Wishes website.

3)  Lifecare Advance Directives

This advance directive was conceived back in 1995 when a loose group of doctors/nurses/lawyers/social workers/chaplains/bioethicists/lay people started researching what, if anything, could truly and best communicate our wishes. The research involved in this project is staggering.  It’s comprehensive with a capital “C”.  Then, once they’d gathered all the information, it was assembled into an advance directive that was test-driven in a sample study.

Pros:  It works. In a study with 1000 subjects it proved more accurate in communicating what people really wanted than any of the other forms available at that time.  Lifecare also provides specific advance directives for active military personnel, citizens of the four U.S. territories, and those in federal prisons, all of whom are subject to slightly different regulations.  There’s an A.D. for those who travel internationally, too. The website also offers a wealth of guides to help in understanding the labyrinth of medical and legal choices out there (for those who love footnotes, prepare to be thrilled) and there’s just nothing else out there that compares in terms of comprehensiveness.  The researcher in me is hopelessly…hopelessly…smitten with this form. They can be downloaded online or ordered in print.  (The print versions are more expensive.)

Cons:  It’s l.o.o.o.o.n.g.  The main form is 30 pages.  It’s also more expensive than any other form.  Each directive and guide is priced separately ranging from $3.99 to $16.99, although the main form that most people would use is $7.99.

Humorous side note: The Should I Use a Shorter Advance Directive? guide alone is 32 pages long with 199 footnotes.  (If you were wondering, their answer is no.)

I haven’t heard back yet whether or not the Lifecare form can be registered with one of the online registries.  I’ll update this as soon as I get an answer.

UPDATE:  This form can be used with at least one national online registry.

4)  The Protective Medical Decisions Document (PMDD) by Patients Rights Council

While some people worry most about late-stage medical overtreatment and the profound, unnecessary, and unwanted indignities it can cause, others are more concerned with the somewhat cavalier attitude toward the value of end-stage life currently making inroads in the general awareness.  I, personally, have seen tragic examples of both dynamics play out in real life and therefore share both concerns. The PMDD is specifically designed for those who are more worried about the latter problem.  It eliminates the living will entirely and offers only a Durable Power of Attorney for Health Care that is limited in one important respect: the “agent may not authorize that you be given a lethal injection or an intentional lethal drug overdose. Further, your agent may not direct that you be denied food or fluids for the purpose of causing your death by starvation or dehydration.”

Pros: This form gives someone who is strongly pro-life additional protection against the possibility of either having life-sustaining treatment withdrawn prematurely or being overdosed against their wishes.  (The latter happens more frequently than I think most people understand.)  There’s a multi-state PMDD as well as state-specific forms for those with specific statutory requirements. This form is free (a donation of $10 is requested but not required.)

Cons:  The PMDD is not available online for either viewing or ordering.  It has to be ordered by phone and delivered snail mail.  Photocopies of this form are not considered legally binding (which actually has some pros, too, see the explanation.) This means it probably wouldn’t work with an online registry, if that was even possible to begin with, which I’m still looking into.

WHERE TO FIND IT:  To obtain a PMDD packet, phone the Patients Rights Council (800-958-5678 or 740-282-3810) between 8:30am and 4:30pm (eastern time).  Be sure to designate which version of the PMDD…Multi-state or AK, AL, CA, CT, DE, FL, HI, IN, MI, MN, MO, NC, ND, NE, NH, NV, OH, OK, OR, SC, TX, VT, WV or WI…you want.  For more information about the PMDD visit the Patients Rights Council website.

5)  MyDirectives.com

MyDirectives.com is brand spanking new (just launched this month) and is a private company’s effort to overcome some of the main hurdles that keep people from completing effective advance directives.

Pros:  They’re a one-stop shop where a person can access and fill out an advance directive, and then file it with an online registry all in one place.  Judging from the informational videos on the site it looks like the A.D. itself is user-friendly and fairly complete but I couldn’t actually access any of the specific sections for a closer look without signing up first.  There’s the unique opportunity to include audio/video recordings with the advance directive, which I think is a particularly nice touch.  The website has a lot of good information (including a section on autopsy choices…I didn’t even know that was necessary.)  Probably the greatest advantage MyDirectives offers is as a central source of information.  The form is simple to fill out and keep updated online (updates are critically important) and then a personal link to the records can be provided to loved ones so they can also view the document and any changes immediately.  The registry is also available to necessary medical providers of course.  And best of all, everything is free to the consumer…the advance directive and the online registry. (the company makes its money on the back end from insurers/government agencies.)  This is a great savings.  The cost of the other two registries I looked at average about $60 for five years.

Cons:  Not only is the website new, so is the whole concept.  There are bound to be some kinks to work out along the way.  Also, since everything is done online, there is no traditional “form” that one can download and fill out by hand.  This creates a significant hurdle for elders and others who lack either computer skills or access.  And as I mentioned, there was no way to preview the document before signing up for the service.  Also, this website is brand exclusive.  You have to use their advance directive which can then only be registered with their online registry.  None of the other advance directives mentioned above will work with MyDirectives.com.

Overall, this concept is absolutely brilliant and, I believe, the wave of the future.  I’m very excited about it.  I’ll be following it to see how the website itself does in practical reality.

WHERE TO FIND IT:  At MyDirectives.com.

So far I’d say that, developmentally speaking, if the whole field of advance directives was computer technology, right now it’s at the stage where we’d just be launching the internet.  Lots and lots of different advance directives out there but very little inter-connectedness.  The good news is I think that’s about to change as tools in this field start becoming more user-friendly, connected, and efficient.

A couple years from now I’m sure I’ll look back at this post and shake my head in wonder.

Enough.  Originally, I was planning to cover online registries in this post, too, but ha ha ha.  This monster is already over 2,000 words.  So that will have to do for now.

Next time:  Part IV:  Advance Directives: Will They Be There When We Need ‘Em?

When NOT To Tell Someone They’re Dying

People who work in end-of-life care feel pretty strongly about telling people the truth.  If someone is dying and they want to know, then they damn well deserve to be told.

Why? Because wrapping up a life requires time to tie up the practical details, deliver final messages, bid farewells, and savor all the myriad “last times:”

Last birthday or bike ride, vacation or dance.

Last scent of fresh rain.

Last kiss of a beloved.

Last pang.

Last breath.

These moments are essential.  Validating.  Sacred.  They’re like rare, sparkling jewels scattered through a gathering dusk, and their aching sweetness is life multiplying itself a thousandfold as it picks up speed.

Yes, definitely–receiving the news that we’re going to die is a blow like no other, and trust me, delivering the message sucks, too.  But the alternative…to strip a person of their opportunity to gaze around in final wonder, to direct them instead to keep their head down and keep running, running, running on some exhausting, futile wheel of cure-seeking or worse, allowing them to die bewildered, panicked, or lost…is to strip them of life’s final and greatest miracle.

It’s selfish.

Now.  Having said all that, there’s one situation where it’s advisable not to inform someone they’re dying, even if they say they want to know.  It’s when they’re suffering from short term memory loss.  Whether the damage sources from dementia, brain injury, alcoholism, or pharmaceutical side-effect doesn’t really matter.  The effect is still the same.  Each time they hear it, it’s like hearing it for the first time all over again.

Personally, I think people in this situation should still be told initially, even though they’ll probably forget.  But telling them repeatedly would be kind of cruel.

Nobody needs that.

copyright Dia Osborn 2011

(The graphic above is by scottchan and, like many of the photos I use here, I found it on the terrific open source website: FreeDigitalPhotos.net.)

Potential For-Profit Hospice Abuses

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.

copyright Dia Osborn 2011