Tuesday, September 16, 2014

Let's talk about death, baby

Let's talk about death, baby.
"After all, what’s a life, anyway? We’re born, we live a little while, we die."
Let's talk about you and me.
Let's talk about all the good things and the bad things that may be.
Let's talk abooooouut death.
Let's talk about death.

Tune stuck in your head yet?

Sorry, mine too.

On a recent NPR podcast from Planet Money, the reporter said something akin to, "Death is kind of like sex-- not exactly something a teenage daughter wants to talk about, especially sitting on the couch with her parents after dinner on a random Wednesday evening."

So true.

Ever since I heard this amazing report about a whole town that got their death wishes in order, I have been singing this song (yes, in a never-ending loop that you too are singing), hoping that, when the time comes, I'll feel comfortable enough to sit on the couch with my son to discuss sex, and pondering my own personal ambivalence regarding death.

My death, my family members' deaths, my patients' deaths. Heck, even my dog's death. 

This got me thinking. Death is happening all the time (just like sex).
Death is inevitable (sorry, mom and dad, just like sex).
And death is unbelievably hard to talk about (no argument here).

But why? 

My answer is pretty basic-- just like sex (ahem, fellow healthcare providers, another topic for another day), I don't talk about death enough. And I don't really know how to talk about it.

Give me birth control. Ear wax. Diabetes. Flu shots. Eczema. Anal itching. Vaginal discharge. Zits. Anxiety. Toe fungus. I can speak on any of these topics with ease and knowledge. I can educate, reassure, empower.

Death, however, is a different matter entirely.

Truth be told, I'm not particularly good at talking about death. Yup, you heard me correctly, I'm a physician-- a family physician, and I'm bad at death. I'm awkward, ambivalent, and surprisingly nervous. I'm too frequently under-prepared, always wishing I had better words, more polished form, and more grace. I'm also young and blessed by health, which means I can avoid death a little more actively. 

On this particular topic, I cannot help but wonder, shouldn't I be better at this?

Yes, I should.

And yet, perhaps not unlike yours, despite not talking about it much, my life is pretty full of death. Okay, so maybe I get a little more death than the average Joe, but I am certain that if you were to sit down and list your own death encounters in the last year, you would find you have quite a bit of death in your lives too. After all, death is an inevitable part of life.

Here are a few of my death memories that stand out over the last year:
  • My previously-healthy father-in-law faced several tremendously close calls with death over the last ten months, including a battle with flesh-eating bacteria (unfortunately, he lost his left leg) and an autoimmune paralysis that left him on life support for many weeks and in the hospital for months. 
  • An 85-year-old supremely accomplished patient of mine with horrible arthritis of the spine but a mind as sharp as a tack asked me the other day about how she might gracefully end her own life.
  • My husband and I recently finished reading EB White's Charlotte's Web with my 3-year-old son. He loved the book and listened actively and patiently to the story every night over a week's time. I wasn't so sure my little guy understood Charlotte's death until he overwhelmed us both with an intense emotional response about an hour after we read the last chapter (poor, sobbing heart). Ever since then, he mentions death frequently.  And by frequently, I mean daily.
  • The daughter and 24-hour caregiver of a very old, very demented man (he is my patient) told me she feels guilty about making the decision to transition him to hospice. She's worried her siblings will look down upon her. And so she won't sign the papers.
  • A 69-year-old healthy cyclist made a visit to see me to talk about how to document his final wishes. He told me that none of his adult children wanted to be his surrogate decision-maker. He was wondering if I thought it strange if he chose his girlfriend instead.
  • Last year, a friend's dear puppy fell severely ill over a relatively short period of time. My friend and her husband had to make the painful decision to either spend a lot of money and time dragging the pup to specialist vets hours away or euthanize her. Though they felt good about their final decision, it was terribly sad.
  • My husband's 92-year-old grandfather had been failing gradually over the last year-- until, that is, he agreed to get hospice care. Since then, he started eating again and even makes it to some family functions. We thought he was dying. Turns out he wasn't-- at least not yet.
Each of these encounters presents an opportunity to tackle the topic head on: to discuss how my father-in-law might really want to die, to enrich my son's understanding of life in the context of mortality, to empower my patient to choose dignity for her father, to support the difficult decision that is euthanasia and suicide, to enrich my own skills by simply practicing having the conversation. And I am embarrassed to admit that, in too many of the examples above, I tripped and fell or just ran way.

This is hard stuff.
And so, in an attempt to work on this obvious weakness of mine, I wandered into a reflection on why death is so hard to talk about-- for ordinary humans, doctors, and even super heroes.

Death is morbid. Uh, duh, you might say. That sentence makes no sense; morbid and dead are synonyms. But that's not really true. In fact, according to the esteemed dictionary of Google, morbid actually means "characterized by or appealing to an abnormal and unhealthy interest in disturbing and unpleasant subjects." Is death actually morbid, then? Maybe only if you believe it's inevitably disturbing and unpleasant. I can think of plenty of ways to die that would be disturbing and unpleasant; drowning, for example, one of my least favorite ways to imagine my own death. Burning to death another one that comes to mind. Recent media coverage about botched lethal injections definitely seem disturbing and unpleasant. That being said, the act of dying need NOT be disturbing, particularly if the dying person is comfortable and surrounded by people he/she loves, having felt like life has been sufficiently fulfilling and that its end comes with dignity bathed in love.

Death is uncomfortable. Or is it? How many of you have actually watched a person die, and I don't mean on TV or in the movies. I mean, sat there at there and watched someone take his/her very last breaths, his/her heart beat its very last beats? I have-- at least a handful of times-- and I am here to tell you that death CAN be uncomfortable-- the most uncomfortable death I have seen was a young man dying of liver failure as a result of his alcoholism. He died extremely uncomfortably. And the memory of his gruesome death is seared into my consciousness forever. It didn't need to be that way-- we all knew he was dying-- but the system let him down, didn't prepare him to be comfortable with his own death, tended his symptoms without confronting his mortality.  I have been in beautiful, quiet, peaceful, comfortable deaths, deaths in which someone literally looked like he/she moved from a place of sleep, to a place of final rest. And breathed a sigh of relief. Death nurtured life.

Death is scary. Definitely scary. No doubt about it. I know I am not the only person on the planet who (morbidly) imagines my life ending amidst the screams of a crashing airplane, or trapped underneath a body of water, or in a beeping-tube-filled ICU hospital bed.

Death is definite. Perhaps this is where death and sex do converge. Sorry, parents, every single one of your sweet children will eventually die (and close to that same number will eventually have sex).  Henry David Thoreau wrote "Death has beauty when seen as a law. Not as an accident. It as as common as life".  Perhaps it's the certainty that it will happen to each of us that makes it the most overwhelming. Inevitability is not always a man's best friend. Particularly in the 21st Century when we feel inclined to employ amazing amounts of technology to keep people alive during their last weeks on Earth. We cannot, however, ever win. Death always wins. And that perhaps is the only truth in all of this.

Doctors are hypocritical too. Please don't misinterpret my words. I am no model. I am no expert. I, too, am scared shitless of my own death-- and don't even get me started thinking about my mom's or my son's death. I won't sleep tonight.  It is NOT easy to talk about death-- even when my graceful and brilliant 85-year-old patient, trained psyschologist says matter of factly to me, "How can I die gracefully." I, too, squirm. I hem. I haw. I WANT to be able to have as much grace and perspective as my patient, to guide her majestically into the netherworld. I think I'm generally pretty suave in uncomfortable situations-- I thrive on difficult conversations and want to be good at this. But, to be perfectly honest, I'm not. As many of my colleagues are not. For lack of training. For lack of cultural exposure. For lack of tools.

And so, I bumble along, doing my best to do my best in that moment with that patient-- be it in my office or at the bedside in the hospital.

And despite death's definiteness, we systematically avoid it, even as we sit before the oncologist facing our own mortality, even as our own parents face serious and grave illness. We act as though we will escape, we fail to fill out a living will or an advanced directive or a medical power of attorney.

Chances are, when you finish reading this, you'll do none of the above. Fine. Fine with me. But do this one thing-- for yourself. Call or email or take the person out to dinner who you think would be the BEST person in your life to make decisions if and when some complicated time come. It may be your first born or your neighbor, heck, it could even be your mailman. Sit with them, designate them, and give them some background, so if you find yourself unconscious in the hospital or ventilated in the ICU or even just sitting in front of the oncologist with a new diagnosis, you know that person will represent YOUR best wishes, be your advocate.

For death will come to all of us and it sure is nice to have some company on the way out.


Additional references:
http://deathoverdinner.org
http://www.nytimes.com/2013/11/20/your-money/how-doctors-die.html?hpw&rref=health&_r=0
http://www.agingwithdignity.org/forms/5wishes.pdf
http://capolst.org/
https://www.youtube.com/watch?v=pX1csOAu1IM
http://www.npr.org/programs/death/readings/stories/ebwhite.html

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