Atropos of the Morai (One of the Sisters of Fate)
In the previous post Odd Thing About Dying #1: They’ve blocked most of the exits I talked about how challenging it is to die these days because the modern medical system has evolved to prevent it wherever possible, even when a person reaches the end of their natural life and is more than ready to go. And so far hospice (along with the growing palliative care specialty which often goes hand in hand) provides the only officially sanctioned exit where people are allowed to leave the system without a fight.
Now, that being the case you’d think that everyone who didn’t want extraordinary measures taken to extend their lives would be fighting to get enrolled in hospice as early as possible, yes?
Well, no. Far from it. Hospice care is one of the most misunderstood and underutilized services out there while, where palliative care is concerned, the majority of people haven’t even heard of it yet. There are a number of reasons for this (including the fact that most people don’t WANT to understand them because it involves talking about dying) but there’s one reason in particular I’d like to discuss here and it essentially boils down to this:
Most people feel to some degree that, if they enroll in hospice, then they’re choosing to die.
This isn’t true for a couple of reasons:
1) When a person enrolls early enough, hospice is about deciding to LIVE WELL UNTIL one dies. It’s about life, not death.
2) Dying isn’t really a choice to begin with, it’s a destiny. Choice implies we could decide not to die if we didn’t feel like it which of course we can’t.
People aren’t entirely wrong however. Due to some brilliant medical and public health advances we don’t usually “just die” anymore, we have to choose when; when to stop seeking treatment, when to forego that surgery, when to surrender to that infection, when to decline that CPR, or when to remove that ventilator. Either we or our loved ones have to huddle with our doctors, weigh all the options, and then consciously decide whether to fight for the possibility of extra time or to let it go.
Of course at first we hailed these advances as unqualified blessings but over time it’s turned out that all the new choices can create something of a burden, and sometimes a curse.
You see, there really isn’t a clear point anymore where a doctor has to tell a patient, “I’m sorry but there’s nothing more we can do.” There’s always something more they can do, which means that until a person get decisive and say, “No, that’s it, I’m through. Please stop now,” chances are the doctors will keep suggesting something else.
Just so you know, this is a sea change in the way we humans face death. It’s historic. As far as I know, never before in human history has there been a point where the majority of people had to consciously choose when to die, or have a loved one choose for them. This development is an unintended consequence of all our new medical possibilities and, along with the miraculous blessings it bestows, it also requires that we now stand up and assume a level of responsibility for our own death that was unimaginable just a few decades ago.
Only we don’t really want that kind of responsibility. Turns out one of the things we actually liked about the old way of dying was that we didn’t have a choice. Destiny used to shoulder that burden for us, which we thought we hated at the time but are now starting to realize was maybe not as bad as we thought.
For a while everyone thought that of course our doctors would take over from destiny and let us know when “our time” had come. But it turns out they don’t want that responsibility either and, honestly, who can blame them? The burden of telling someone they’re going to die is extraordinary, even when a person wants to know. And if they don’t? Well, that can be a lawsuit.
So doctors try and sidestep any kind of straightforward prognosis and hand us the research and statistics instead, from which we then have to try and divine the tea leaves for ourselves. In addition, the majority of doctors still tend to encourage us to pursue aggressive treatment, often far past the point where they would themselves, with the stated goal of preserving hope but really for the purposes of distraction. While they often have a good idea when a treatment will be futile, they also know that even a futile treatment can offer us temporary shelter from our terror of dying, which on the one hand is genuinely kind and deeply human, but on the other is a lot like that old bear attack joke:
Question: What are you supposed to do when you’re being attacked by a bear?
Answer: Run like hell. It can’t save you but it’ll give you something to do for the last thirty seconds of your life.
Only dying is now taking a lot, lot longer than thirty seconds and people are starting to feel like there are better things to do with that time. But our instincts work against us. Seeking further treatment still feels like the most right and natural thing to do, and besides everyone else is seeking further treatment, and on top of that there’s major disagreement about when it’s wisest to stop because it’s completely different in every case.
So to recap, while destiny is still in charge as far as death itself is concerned…we all still die…our medical advances have allowed us to seize more control around the timing issue. Only that means somebody now has to decide when to treat and when to stop, and while we’d mostly prefer that our doctors made the decision since they know so much more than we do, they’re proving reluctant. Which leaves us to make the choice ourselves, only 1) we don’t know enough to make an informed decision, and 2) we’re unwilling to educate ourselves because that would mean actually talking about dying and we don’t want to do that either.
The whole situation reminds me of a teenager who wanted nothing more than to move out of the house and call all the shots, only to discover the new freedom requires getting a job to pay the bills. Well, it looks like our new miracles also demand that we assume more responsibility. We’ve created a bewildering array of new choices around the question of when we actually have to die and our new job is to figure out what, among all those choices, constitutes a wise one.
Next up, I’d like to explore some of the reasons why the current choices we’re making aren’t working out so well. I’m curious to see if breaking them down and examining them more closely might suggest better options. And, as always, If anyone else has some thoughts on this subject I’d be eager and curious to hear them.
copyright Dia Osborn 2013
Oh! Love this!!
You already know many of my feelings and ideas on the topic, so I won’t take up more space.
But I do feel this needs to be addressed and then educate the populace!
Over and over we need folk like you, Dia, who are not afraid to bring up the tough questions! : What is your plan? How do you want to die? Who is in charge in case you fall into a coma? etc. etc.
Out of the closet please!! Death is not the boogieman, our ignorance and our fears are!
In Love and Light!
“What is your plan?” Such an important question Becki, and one so many people don’t even realize they need to ask! And then re-ask again and again. I know mine has morphed quite a bit over the years, and I expect it will continue to evolve as I do.
And don’t ever worry about taking up more space! Your words of wisdom and experience are badly needed my friend.
Hospice saved my Dad’s life…I love saying that. As you have written about Dad’s past year in Hospice, he has not had one day of pain and has loved living every one of those precious days. If not for Hospice Care, he would have died in great pain…most likely nine months ago. Dia, this blog is really great…and put the whole topic of “options” and “freedom” in a refreshing prespective. I think the most important word in this blog is resp
(not enough room) responsibility. Looks like we are all going to have to take responsibility for this part of our life…starting with education. Thanks Dia for helping all of us with that part!
Your Dad is such a great teacher for us all with his willingness and courage and humility during this final journey. And thanks as always for all your support!
I’m thinking of all the things we’re supposed to decide before we check out. It’s not that much different than the choices couples are making regarding conception and birth these days. First there’s, shall we, then there’s how, then let’s pick a convenient date . . . for the c-section. . . Destiny has been replaced by a calendar and a scalpel.
I second what Cal says, btw.
Wow, I hadn’t considered the similarities with the way so many women handle childbirth these days but it’s kind of true. I guess it comes down to the difference between looking at birth and death as events to be managed, or as great mysteries to be swept away by. Can you guess which perspective I prefer? 🙂