Sunday, August 9, 2015

Coming Home

"You're angels," they say. "You're saints for doing what you do."

How little they know.

Most of us came into this profession - hospice, if not nursing in general - because we have lost. We have lost someone, or many someones, and have come to truly recognize and accept the inevitability of death. What bugs me at the moment about health care in general is the lack of knowledge amongst MDs about end of life teaching and support. The medical model is based upon curative measures: analyze the symptoms (and lab work where applicable), come up with a diagnosis... treat! Cure! Death is not an option, no matter what the cost - physically, emotionally, financially - for the patient or his/her family. Education in this regard is changing: more medical schools are beginning to incorporate palliative and hospice care into their curricula. Awesome. Speed it up, will you? And require older practitioners to participate in continuing education that includes palliative/hospice care? Thank you. 'Cause chemo/antibiotics/fluids/blood/beta-blockers/insulin/etc don't always work.

Every day I walk into work, and there are fresh flowers delivered from a family directly from someone's funeral, fresh coffee (because the previous shift/CNAs/volunteers are amazing), hugs and gratitude from family members of those who are in our care. Part of me feels unworthy. I am simply a person doing my job, which happens to be incredibly important to me. The other half of me is overcome with gratitude. After 3 years in the ER, being almost continuously verbally and sometimes physically assaulted, after tirades from people waiting in triage for seven hours.... Hugs and flowers and coffee are a most welcome change. There's a piano in the family lounge, for chrissake. Hell, there are *three* family lounges. One with toys and books for the kids. And shelves upon shelves of books and music.

And so, with painted walls, a balcony, fresh coffee, and warmed blankets, they declare us Saints.

But I am no angel. I am no saint.

I - and many of us - came to be here, in hospice, in nursing, because we are accustomed to the front line. We are acclimated to literal shit, to horror, to mayhem, to suffering. We are accustomed to things that some people have never experienced - and we hope never will. And you come to us with your wounded, your half or nearly dead - and we revive, or we let go, according to the patient/your wishes. And maybe we seem detached, cold, unsympathetic at times. It's not that we don't get it. It's that your loved one is not *our* loved one - and that is fortunate for the patient on the bed/table/gurney, because otherwise we could not keep our heads together.

My own grandmother is in a nursing home with Alzheimer's. I care for Alzheimer's patients on a nearly daily basis, and I deliver them comfort care the best way that I can as a hospice nurse. I am told that I do a good job. The patients' families are so appreciative, so kind and complimentary. Grateful.

But my own grandmother? I have not had the balls to visit her in over a year. Because I cannot bear to see the shell of the person I knew her to be. I am ashamed of myself for this. How can I be a hospice nurse and yet not participate directly - as a granddaughter - in her end of life? It's too much. I can't take the nursing hat off and simply be her granddaughter, because it hurts too much. I asked my mother recently - with my nursing hat on - how much my grandmother was eating per day. Three full meals. I broke down in tears and had to leave the dinner table, because it was too much to bear that my grandmother does not know any of us - her family, her children, her grandchildren, all of whom she lived for - and yet is physically strong enough to maintain an appetite, to sustain her blind existence, to continue in this way for however many years to come.

I wished her body to be less capable, faster. I wished her bowels to be less capable of processing food, and for that progression of her disease to lead to less hunger, and for that lack of hunger to lead to less nutrition, and for that lack of nutrition to lead to a swift and painless death. I wished for a fall with a head strike so fierce that it killed her instantly.

Because *I* can't stand it. Because I am selfish. Because I am impatient. Because I - and my family, most notably my mother - are not only bearing the weight of old memories she no longer retains, but we fear our own futures, our own inevitable declines.

So, no. We are not angels. We are no saints. We are doing for your family what perhaps sometimes we cannot do for our own. We are projecting our hopes for our own loved ones onto yours. We are prepping ourselves, shielding ourselves, arming ourselves against what will eventually hit us directly home.

Friday, March 13, 2015

Florida Shoots Itself in the Foot

Although this article ("The Question Doctors Can't Ask," written by James Hamblin for The Atlantic) is now a few months old... please take into consideration that seven months is a very brief period of time in the health care and law milieux - very unlike that of social media. When it comes to research, nursing schools in general teach that peer-reviewed studies less than five years old can be considered reliable sources of information. Obviously, this article is not a peer-reviewed study. That doesn't mean it isn't worthy of ten minutes of your time - we are all (MDs and RNs included) someone's patient at some point in time (ideally across the lifespan but that's an entirely separate issue).

The item addressed in the article - Florida's relatively recently imposed law that doctors/practitioners/health care facilities are not allowed to inquire if a patient has a gun in the home - is one that could potentially affect many (particularly "red state"), if not all Americans, given the trend of "monkey see, monkey do" legislation among the states of our country (see: the addition of questions re: gay marriage and/or the legalization of marijuana to ballots nationwide in recent years).

I also humbly ask that you consider the notion that we are a nation increasingly overrun by political correctness, which seems to be a large part of the reason why this legislation passed to begin with. I personally believe the PC trend is equal opportunity in terms of its applications by Republicans and Democrats alike.

Questions that Florida lawmakers need to address (from the humble perspective of an RN):

Does "facility" mean hospitals and hospital-affiliated clinics, or also include private offices - in particular, those of psychiatrists/psychologists?  Does "licensed practitioner" refer solely to physicians, or are licensed RNs considered "practitioners" as well (as opposed to licensed "professionals")? Define medical "relevance" as it pertains to this particular law - what particular presence or absence of symptoms/diseases would deem the presence of a lethal weapon in the home "irrelevant" to the overall health and well-being of the patient and the people they live with? Shouldn't the overall risk of the presence of a weapon in the home be something at least ASSESSED by a health care professional, at some point, in some health care setting? A doctor? A nurse? A social worker? Counselor? Anyone?? Bueller???

Note to the general public: Lots of health questions have the potential to "offend." Guess what, patients (and we all are patients - including MDs and RNs)? Grow a pair of whatever anatomy fits, and deal with it.

I acknowledge that as a Registered Nurse, I am biased in this statement, but I'll say it anyway: RNs are rated year after year as one of the top most trusted professions nationally, right up there with teachers and firefighters. If we're talking clinics/hospitals here, dear Florida, why not allow the RN ask the tougher questions (which in practice, we generally are already doing, anyway) and use his/her clinical judgment to determine if MD (or Social Worker) notification is indicated? Just a suggestion.

In light of the statistics as mentioned in the article.... What an idiotic and dangerous piece of legislation. Know what's more offensive than your doctor/nurse asking if you have a gun in the home? As Mr. Hamblin responsibly addresses: Your 7 year old seriously injuring or killing (or being seriously injured or killed by) someone because s/he was curious how the gun worked and is not developmentally capable of understanding the risks of their "play," much less the permanence of death. Your disoriented family member (with Alzheimer's, dementia, schizophrenia...) getting a hold of it. I myself would have committed suicide (and most likely successfully) at age 14 had my parents not stored my dad's .22 safely (possibly per the urging of my physician).

All because no one was allowed to ask if, a) a gun is in the home, and, b) if it is properly stored. Because someone could be "offended." 

We're health care workers. We do our best to keep our own personal values/opinions/political beliefs out of our professional environments. You (general public/legislators) need to do the same, if we are to perform our jobs and promote your well-being to the best of our ability.

Oh, Florida. I pray you haven't started a trend.

Sunday, February 22, 2015

Leave No Man Behind

After three years working in the ER and two years working in hospice, even I had to take a few breaks while watching A Certain Kind of Death, an hour long 2003 documentary based in Los Angeles and focused on what happens to the remains and possessions of those who pass away with no next of kin. While there are graphic images of the deceased during various stages of the process (from discovery of the body through cremation - consider yourselves warned), the film focuses primarily and respectfully on the business end: retrieval and identification of remains, attempts to discover and locate next of kin, storage of the remains, the cremation process, storage of cremains, accounting and distribution of assets... and finally, if no claims are made to the deceased within a set period of time (usually a few years, depending on local laws), mass burial of unclaimed cremains.

From ER to hospice, if there is a singular most poignant thing I have learned, it's that there is nothing sadder than caring for a person or the remains of a person who has literally no one able (or more sadly, no one willing) to claim them. To let go of the hand of someone who has died with literally no other hand to hold is one of the most devastating features of the work I've done, and an experience I've had too many times.

This documentary is 12 years old. If anything has changed on this subject, it's that the problem has gotten worse in many places. Case in point: Detroit. Toss in an aging baby boomer population, a large number of undocumented immigrants, and the fact that fewer and fewer of us live and die where we were born... The math isn't hard.

Stay connected. Write your advanced directives*, so that even if you die alone, those of us who find you can ensure you are not LEFT alone.


*linked site is for Wisconsin - friends/family in other states can find your state's applicable forms very easily with a quick Google search).


Sunday, January 19, 2014

Enough Rope

One particular day, and no day in particular: Alert and oriented x3. Just had a few bites to eat. Talking, smiling through sadness. Papers are signed. Reluctant acceptance. The admitting nurse gives no particular prognosis in report, because death, it seems, is busier approaching other people today, and this person shows no signs of going anywhere anytime soon. The "just in case" medications are ordered for delivery later that day, no rush. A team is assigned. The ducks are lined up. She's a little relieved. Sad, but relieved. It will be okay. Her family will be okay, and we are watching out for her, and for all of them. Death perks his ears up, makes a U-turn and comes running, and arrives before the ink had dried.

A different day: I'm no expert, but I'm pretty sure that sitting straight up, wide-eyed and gasping for air is probably not how most people want to spend their last hours in this world. I'm also very sure that this phone cannot dial the pharmacy quick enough, the oxygen cannot arrive soon enough, this medication isn't kicking in fast enough, and everyone in this room including me wishes for more arms, more air. Your right hand in my left, my right hand with the syringe in your mouth, your left hand in the chaplain's. You're breathing so fast that the rest of us have forgotten how. The room is claustrophobic and expanded all at once, I am so grounded in these movements, in this moment, my eyes locked on yours - the only way we can communicate - and at the same time, I'm floating somewhere above us, watching from somewhere else, only curiously and delicately aware that this is really happening.

How long have you been breathing like this. Yeah, I know. Moot point. Okay, let's try this other med. You nod.

Even with all the teaching I've done - this is what you should do, this is the medication you should give, this is what NOT to do, CALL US if you have ANY questions, CALL US if there are ANY changes in condition, CALL US if the wind shifts or you just want to tell me it's cold outside: CALL US. We show, we teach, we write it down - sometimes they just don't call. And so we call you, to ask, to check in, because those signs that are written down on that piece of paper we gave you? Those signs are Here and Now, and we're not so sure you're seeing it. In fact, we know you're not. We don't blame you. It's too close up to focus on, too close to home to bear. I get it, and I don't blame you, but I'd be lying if I said I wasn't angry. It doesn't have to be like this. There are things we can do. We can't do those things if you don't tell us what's happening.

And in the same stream of thought, the Higher Me, the Coach, tells myself: You can't control this. You will torture yourself thinking you can. It's not up to you, and it's not your fault. You did what you could. You still are.

It takes forever, but you do relax. Your breathing is slower, easier. Your eyes have lost the panic, and I can see that cloud coming over them, that iridescent fog. We smile.
"The oxygen will be here within an hour or so."
You nod.
"The meds are kicking in now, you look better...?"
The slightest hint of a smile.
"Your next dose is in twenty-five minutes. You're already almost there."
You close your eyes. You're pooped.
The chaplain asks if you'd like a prayer. You scoff and turn your head. We laugh. "How about a little story, then?" You nod.
Something about mistakes, the making of them, forgiveness, eternal love, acceptance, relief. You used to do some really bad things. You know that we know, even though we haven't talked about it. You did some really bad things. I've done some really bad things, too. You can tell. Thieves and liars, penitents, bastard saints. Here we are.
"A little better, at least?"
You smile and nod.
"You want us to go?"
You shrug and tilt your head - it's up to us.
I'm hesitant to go, but there's nothing we can do that hasn't been taught, you are not ours to release, and none of us will follow where you are going, not right now, at least.
"Only fifteen minutes now. You cool?"
You reach out for my hand, and I'm not sure at first whether it's "stay with me" or "I'm okay." My face is a question mark. Your eyes soften with the answer.
"Fifteen minutes. Oxygen in an hour. And then we call the dancing girls."
You laugh. You really, honestly laugh. I can tell it kinda hurts, but you're laughing anyway.
"It's going to be okay. Do you trust me."
You close your eyes and nod.

A few hours later, the emails come in. Panic, 911, they did CPR...

It takes two beers and two hours on the phone with a colleague to convince me there really wasn't anything else I could do. It didn't have to end that way. I worked my ass off, I taught, there was hand holding and meds and a fan and blankets on and off and on again and dancing! fucking! girls! and more hand holding and God itself and HE TRUSTED ME. This whole week has been horrible. We know so much, and we don't know shit. This death is only the tip of the iceberg, and I need a mental vacation. The mystery I usually love about life, about science, about death - the little things WHICH ARE EVERYTHING that we will never truly understand and know for sure - I am so fucking pissed at it right now. At that beauty. It tricked me. Stupid fucking existential Zen bullshit and it's stupid and I hate it and I want to break up. I want my sweater back, I want my money back, I want to write a strongly worded letter. He trusted me, and they did CPR. I failed.
You didn't fail, she says. You made him comfortable enough to relax just enough to go. That IS the best you could have done. You gave 125%. You are awesome.

I don't entirely believe her, but I know I need to try to, and I am so deeply and humbly grateful for this friend, for the gesture in the words.

God's in my ear, muttering something about atheists in foxholes. I am so far past empty I can't even see the E. I email the chaplain. "If anyone's looking for me on Monday, I'll be in the attic with a rope and a bucket." I don't mean it - he knows I don't. The man is a master of metaphors, allegory, Proverbs.

His reply:

"I live by Dumbroski's law that says Murphy was an optimist. Don't use a rope. The way this day has been going, the rope will stretch long enough so you'll end up with a couple broken ankles."

I laugh so hard it hurts.

Dancing girls. Murphy, the optimist, and oh my god that would SO totally happen you have no idea and thank you I love you.

And finally, I really do believe he's laughing with me. And we let go.


Sunday, November 3, 2013

Pronouncement.

After great pain, a formal feeling comes--
The Nerves sit ceremonious like Tombs--
The stiff Heart questions-- was it He that bore?
And yesterday-- or centuries before?

The Feet, mechanical, go round
A Wooden way,
Of Ground, or Air, or Ought,
Regardless grown,
A Quartz contentment, like a stone.

This is the Hour of Lead--
Remembered, if outlived,
As Freezing persons recollect the Snow--
First-- Chill-- then Stupor-- then the letting go--

- Emily Dickinson.

I listened for at least a good minute or two, my hand on the bell of the stethoscope on her chest, simultaneously listening for heart and lung sounds, looking and feeling for the rise and fall of her chest. "Bell" - Pablo Neruda's frequent metaphor for "voice," or "life." Her eyes are partially open. The unnatural stillness of everything - breath, air, time - claustrophobic and weightless, all at once. I'm suddenly focused on the sensation of my feet on the wood of the floor, the force of gravity, the physics of the world I'm standing in juxtaposed against the unknown physical laws of wherever it is this person has gone, leaving only this carcass behind, an abandoned vehicle, keys still in the ignition. My eyes rise up from hers and look across her bed. I'm expecting to see one of the ER docs, a familiar face, to whom I can ask, "Call it?" But there's no one. Just an empty space, beyond which I can see through a window to the house next door, in which unseen people are probably making breakfast, hearing each other without listening in the busy-ness of morning. So much to do, and here, nothing.

Except to call it. I look at my watch. There's no one in the room to hear the time, or to see the number floating almost visibly in the air. Her hand is still warm...ish. Something about passing ships. Dark and unknown waters. Weightless and claustrophobic.

As I step back, her family enters the room. I can't figure out why they'd waited to follow me in. What else was so goddamn important...? They're young adults, some teenagers still. I realize with a jolt they probably didn't realize she was already gone when they'd called, they may have never seen a death before, or even a dead body - and am hit with a gutpunch of guilt.

They stop in the doorway. One of them swears she just took a breath, shouts that I'm wrong, she's alive, and runs to the bed, crying her name, lifting her head and torso into his arms. Holding. Begging. Sobs. I look to her chest in sheer terror for movement, her eyes for the faintest dilation of a pupil, terrified that oh my god I have just made the sickest and cruelest mistake of my life... maybe it had been a record-breaking apneic period? maybe her heart was just too weak to hear? maybe I'd been completely and horribly, tortuously wrong, and these poor young kids were going to hate me forever for being the most incompetent nurse in the world, for having to pronounce her death... twice...

She's gone! Oh, wait... Just kidding! Whoops! Oh, wait.... No, now she's gone. Wait...? Yup. Gone. Sorry 'bout that! *nervous laughter, rechecks her watch*

I'm not wrong. The sounds of grief quieting with bitter and final acceptance. And there are no monitors, no IV pumps to turn off. No gloves to remove, no white sheets. No curtains to pull, no carts to restock and move out of the room. Just this woman and her children, gathered on and near her bed, and Stevie Wonder's "Signed, Sealed, Delivered," washing, roaring suddenly into the room.