Why I Don't Have An Advance Directive. Should I Consult a Death Doula?

What have you done to plan for the inevitable?

I, of all people,  should have an advance directive.   I’m in my seventies, live alone and have a long list of life threatening health conditions.  I’m all too aware that anyone over seventy is at much higher risk of death from Covid-19 and that if you wind up on a ventilator you will probably never get off it.   If you’re unlucky enough to survive intubation at my age you’ll probably wind up with dementia and lungs like Swiss cheese. I do NOT want that to happen to me.

Even so, my fear of death has not overcome my fear of planning for death. 

I keep putting off doing the paperwork necessary to record my wishes and have them witnessed and notarized.   All of my sensible, organized, considerate peers who want to save their families the pain of deciding whether or not to pull the plug, not to speak of who gets what,  have gotten that stuff done.   What’s wrong with me? 

Probably the same thing that’s wrong with the other two-thirds of Americans who don’t have advance directives.  I am a wuss.   Don’t want to think about it.

I certainly don’t want to think about winding up on a ventilator.  I am intensely claustrophobic and not being able to breathe on my own is a scene from my worst nightmares.    And I’ve seen those movies where they run in with the crash carts and you wind up flopping like a fish as they electrocute you.  I don’t want to think about that either.

It’s not that I lack a good example of paperwork responsibility.   My mother made sure she got all her affairs in order before she died.   She put me on all her accounts, filled out a “Living Will” and put it on her refrigerator.  Then it was ignored by her doctor who tried to put her on dialysis when her kidneys failed.   Luckily I was there to refuse that intervention.

 I’m skeptical about an advance directive enabling me to control my fate.  There’s a reason they call it fate.

Today’s death bureaucracy is not making things easier.  The forms necessary to “get your paperwork in order” have multiplied exponentially.   There’s health care proxies, HIPPA forms, end of life planning, power of attorney forms, wills (both living and dead) even pet power of attorney. And they have to be signed by an attorney and notarized.  A nurse friend told me I had to put my  DNR on my refrigerator on yellow paper WITH my  doctor’s signature or they’d automatically try to resuscitate me. 

Is it really reasonable to expect people to tape a yellow piece of paper on their refrigerators to remind them of their inevitable demise every time they open the fridge for ice cream? 

 It’s no wonder that so many people just want to avoid the whole thing. 

My darkest fears are probably rooted in some unfortunate hospital experiences. I once woke up after surgery totally paralyzed and unable to speak.  I’ve been stuck in an ICU after heart surgery with a nurse who would have given Nurse Ratchet a run for her money.  Compassion and hand-holding? I don’t imagine it would ever happen to me in a hospital, and mid-pandemic any real-life hand holders would be wearing space suits — which I’m sure would trigger nightmares about winding up on Mars without proper gear.  Unfortunately no advance directive can mandate compassionate care when you’re hospitalized.

I’m the queen of both denial and dithering.  My dithering can reach pathological levels when it comes to making decisions about anything that causes me extreme anxiety.   And death is way up there on the top of the panic meter.   There are so many decisions facing me.   Crash cart?  Ventilator?  Dialysis?  Tracheotomy?  Amputations?   I may say I want them to pull the plug, but there’s not a single  plug.  You have to make all kinds of decisions on pain relief, comfort care, feeding tubes, FaceTime.  Do I have to write No FaceTime somewhere since my daughter doesn’t have an iPhone, or WhatsApp and only uses Google Duo which no one has ever heard of.    Will I be able to explain the difference between Android and Apple apps on my deathbed?  Can’t we call the whole thing off?

For all of recorded history people were allowed to die peacefully at home without any paperwork except a will. Then medical science intervened and decided that since they could restart our hearts and lungs and kidneys and even brains that meant they should—forcing us to record our every wish about an event most of us don’t want to imagine in the first place to avoid a fate worse than death. 

Does it really make sense to place all the  responsibility for advance directives totally on people with no medical education  to contemplate what fate is worse (or better) than death.

There are now death doulas to guide us into the great beyond. How about training them to guide us into the pre-death beyond.  Why can’t a death doula talk me through what it’s really like to die, without or without medical intervention.  She would know what interventions to avoid.

 I might fill out all those forms with a little guidance and hand holding from a Nurse Jackie type who knows how to wield a sarcastic comment when I start wimping out.  But I’d have to accept that even if she makes my death more traumatic there’s no recourse.   I’d have to live—or die—with my decisions.   There are no do-overs after death.

Spread the word!

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