Stories patients tell

I’ve been writing full-time for three months now. Being off the hospital floor has done wonders for my aching back, my parenting, my complexion…and I won’t lie I’m not sorry about missing a horrendous flu season. But I miss patient care. Taking care of strangers was a privilege. And the antidote for the morning news. Bigoted, hateful things lose power after a half dozen conversations with the typical rainbow cast of normal humans at your local public hospital.

I miss it today. Here’s a post I found in languishing in my drafts folder. An attempt to capture what I loved about patient care.

My reasons for being a nurse are selfish. I love stories. Taking care of humans for a living was my passport into every socioeconomic, ethnic, racial, psychological, pharmacological kind of humanity. The wildest thing is that everyone thinks their story is the normal one.

A patient might present with humor. Maybe stoicism. Open tenderness for their spouse. They give me stories that show how brave, how smart, how kind, how resilient they are. Or they may present with impaired coping: venom between parents and children. Complete submission to despair. The desire to mete out as much pain as they have been given.

The way people handle crisis of health: physical pain, just plain bad news, never ceases to amaze. An appetite for what people have to say for themselves is what makes me love being a nurse. And hate it.

Sometimes the stories are whispered. Yelled. Told in profane or racist or sexually suggestive language. Sometimes the story is just a kiss between people who have long since celebrated their 30th anniversary. Divorced spouses who sit him beside her as she’s dying. An elderly woman whose power of attorney is a neighbor that takes three days to locate and another to drop by and sign a DNR. A grandpa whose eighteen grandchildren from six different states come stream in. His hypertension abates when they stand around sharing details of their days. Another patient who becomes hypertensive when her mother is in the room.

People sing hymns. People fight with the priest. A retired four-star general occupies the room next to a man living in government housing. Everyone engulfed by their own narrative, healing or getting sicker, thinking they are the normal one. Feeling like this is the first time anything so scary or tragic or miraculous has ever come to pass.

It’s little me, the nurse, that gets to know all these stories. I still pass like a specter through them, over the borders of these private worlds, from room to room.

Bedside nurse personal

It’s a strange thing this working in a hospital. Your professional environment is people who are having the most painful, out of control times of their lives. Or maybe, and often in the medical-surgical ICU where I work, the realization that this is how their life is going to end. It’s heavy stuff. I love heavy stuff. I love being a critical care nurse.

I’m not that great at it yet. I started in February, oriented for 4 months, took patients while I did 9 months of additional training and education.  I use a lot of support from fellow nurses, pharmacists, physical therapy, speech therapy, and I couldn’t do hardly a thing without respiratory therapists. Some attendings are sent from heaven. Others can go well you know where. I’ve had a handful of very, very sick patients which have stayed with me for nights in dreams where I complete the tasks I wish I’d gotten to during my shift. I’ve had many not terrifyingly sick but fragile patients who kept me less occupied with medical needs and more busy with human needs: company, anxiety, hunger, bathroom stuff.

Bedside nursing and shift work? I thought it was something to be suffered through. But like the intensivist I respect and will one day impress always tells me: “You are wrong.”I have no desk. I’ve sent maybe 2 emails. I never know what I’m walking into, but I know it’ll be over and up to the next shift in about 13 hours. This is a relief (out of my hands) and a responsibility (don’t leave a mess for your coworkers).  I’ve never looked forward to work the way I do now. I also regularly come home and lose my mind. I have sworn I was going to quit at least 3 times. I have a new resume for every season. But the deeper in I get, the more I feel the need for the creativity, chaos, and appallingly funny bedside world.

Aside from the heaps of scientific and human condition knowledge I’ve gotten in the past year, bedside nursing has been a self-improvement miracle. Accomplishments I’m most proud of:

Stern voice always at the ready. “PLEASE DON’T PULL THE TUBE OR YOU’LL DIE.” “YOU HAVE TO STAY IN BED OR YOU’LL FALL AND BLEED OUT OF YOUR HEAD.” “NO EATING WITH THE BIPAP ON OR YOU’LL CHOKE TO DEATH.”

Always at the ready to receive the stern voice. “WHAT DID YOU DO TO MY VENT?” (Nothing I believed you when you said you would eat me if I changed the settings), “WHY HAVEN’T THE CULTURES BEEN SENT YET?” (No chance on peripheral access, gonna need that central line order I mentioned…) “YOU MESSED UP.” (Happens all the time. Tell me what I can do to fix it).

Learned to deliver a come to Jesus moment. I’m getting used to being the punching bag for upset, confused, desperate patients going through the worst of what life has to offer. People’s feelings have to go somewhere. But if your feelings are getting in the way of my care we’re going to have a come to Jesus. There’s the I’m going to come down on you like a ton of bricks with teeth and nails and repressed Catholic rage CTJ: “YOUR YELLING AT ME IS MAKING YOUR WIFE’S BLOOD PRESSURE DANGEROUSLY HIGH AND KEEPING ME FROM DOING MY JOB so please go to the waiting room and I’ll call you when we’re settled.” Alternately, the you are panicking so let me tell you exactly what you are going to do to get through this CTJ: “Your mother is dying. Please stop texting your vacationing siblings. Now is the last time you get to hold her hand and talk to her. It is going to be okay.”

As this first year as a critical care nurse comes to a close, I am so happy to be a humble and regularly humiliated newbie in my place. Hospital people are my people. And I plan on staying put for some time to come.*

*I will still look for a job selling insurance every time they float me to the step down unit.

Policy heavy. Palliative & curative & doing the right thing.

Here is the best thing on closed circuit television this week:

Atul Gawande and Amy Berman at Senate Special Committee on Aging
Start at 31:55 and end at 55:25. If you are as pumped as I am about a Senate hearing on aging I’m sure you don’t mind cueing the thing up yourself.

From Medline, a quick intro to the un-introduced:

Palliative care is treatment of the discomfort, symptoms, and stress of serious illness. It provides relief from distressing symptoms including

  • Pain
  • Shortness of breath
  • Fatigue
  • Constipation
  • Nausea
  • Loss of appetite
  • Problems with sleep

It can also help you deal with the side effects of the medical treatments you’re receiving.

Hospice care, care at the end of life, always includes palliative care. But you may receive palliative care at any stage of an illness. The goal is to make you comfortable and improve your quality of life.

Our health care system is based on the curative model of care. But you know what? I can’t think of one single patient in my given short tenure in ICUs that was curable. We patch people up. We send them back out into the world to manage their health. And we think maybe the next exacerbation will be the one that ends them. Or maybe we’ll treat the same COPD/heart failure 25 more times before the angels call him home. Maybe 100 more ICU days billed. 100 more days spent being woken up for vitals q.1 around the clock, catheter in the bladder, 6 or more needle sticks a day, uncomfortable bed, bad TV, worse food, and exponentially multiplying chances of acquiring a hospital infection.

When I have a very sick patient coming to the end of a long and painful (and expensive) road I am driven mad by the pain and sometimes harm we cause to extend life, or better stated, delay death. I’m a conscientious objector to placing naso-gastric tubes up the noses and through the pharynx of barely conscious patients on 3 vasopressors with ejection fractions of 10 percent. No tube feeding in the world is going to contribute to that person’s well being, but it will certainly hurt like hell. And we charge for the pleasure.

But hear the good news. We are doing better at starting to consider patient quality of life as part of care. The provision that got cut from the original ACA came back last year with CMS approving a reimbursement for end-of-life discussions. We work within the fee-for-service model. Talking about what you want from your care gets a ICD code and Medicare will pay your doc. This victory though seemingly small, is prized.

Next up for change, and this where Gawande and Berman come in as expert witnesses, is better access to palliative care and its use alongside curative care. These two care models act like enemies when I see an end-stage liver failure patient’s palliative care physician’s orders being DC’ed by the attending, then vice versa, and we go round and round. But they can cooperate. A patient with serious illness (heart failure, COPD, cancer) should not have to make the either/or choice of “fight” with aggressive interventions (multiple surgeries, 2nd and 3rd line chemo) or “give up” with comfort measures only (let’s be sensible and keep antibiotics and say a blood transfusion on the menu). Choosing what your goals are for the remainder of your life, if it’s 3 months or 15 years, and having the right to adjust that choice requires the care of both palliative trained and curative aimed practitioners. Most people want to be comfortable and home in their last bits of time. Pet their dogs and eat food not through a tube and smell flowers (no flowers allowed in the ICU). Very few people want to spend half a million dollars having their body flogged with futile care. But we do have to talk about it before it happens. And as Gawande says, with the same words used time and again by children of the intubated parent who don’t know mom/dad would want, it’s always too early to talk about it until it’s too late.

So proposed changes:

Professionally–better training for doctors and nurses in the provision and goals of palliative care. Before he wrote his book Dr. Gawande didn’t know what it was. Let’s get on that professional organizations, universities, health systems. Nurses IMHO are very progressive when it comes to palliative care. And great educators.

Politically–Some Medicare policy tweaks:

  • Medicare will not reimburse for any curative treatment after a patient elects hospice care. As a patient, that choice is scary. And unnecessary. Provision of both types of care could prevent overly aggressive and expensive care chosen only because the alternative was nothing more than symptom management. Middle ground, y’all.
  • Home care is only reimbursed when a person is terminally home-bound. Where do people go when they aren’t there yet, can’t afford home care, and can’t take care of themselves? The hospital. What’s more expensive and less comfortable than home care? The hospital.
  • If you should need hospice, Medicare requires a minimum 2 night stay in a hospital before giving approval for reimbursement.That seems like a typo, right?

I have no conclusion aside from knowing that progress is being made and being damn proud of it. And I’ve trumpeted my love for Atul Gawande across the land and sea, but standing ovation for Amy Berman. What a nurse. She writes beautifully, too.

Shift work for me, Shocking for you.

My patients are often too sick to speak, much less ask questions about how their care plan is progressing. Yesterday I was lucky to have a patient with family at the bedside. Children that were young and healthy, and based on not subtle comments had the advantage of money and power thus the ability to control everything in their environment. Under normal circumstances. Things had rapidly deteriorated for their mother over the previous 24 hours and frustration with serial specialists painting differing pictures was high. It was very important times for therapeutic communication.*

For caregivers and family with loved ones in the ICU, there are two basic questions:

How did this happen?
To a nurse or a doc the handful of illness we see in the community hospital (pneumonia, sepsis, organ failure, stroke, all of the above) run a well worn path and are nothing to get excited about. To the family of the patient, their loved one was watching baseball two days ago and now we’re telling them to hurry up and sign a paper giving permission to place a central line and intubate. Mom is unrecognizable from the edema in her face and her toes are turning blue. How did it happen so fast?! Family members will show me pictures on their phone insisting that I note the date stamp, “look at her, she was fine!” And she was, until she wasn’t. The turn of events, the speed, the randomness of having some soup go down the wrong pipe into the lungs or reaching for the door handle and noticing you can’t feel your hand. We aren’t able to reconcile it.

As the nurse, validate that this is a catastrophic change. No one is running around screaming STAT! but it’s is as serious as it gets. Permission to be shell shocked. Run through the series of events that got the patient to ICU. Do it again. Answer questions. Do it again. The brain is a non-stick surface when people are experiencing a trauma. ICUs are traumatic.

What next?
This is a toughie, but everyone wants to know. Ask loved ones if they would like your nursing assessment, and if so, share it. People are intelligent until proven otherwise. Your mom is very sick. Here is what we are doing to help her breathing/kidneys/heart/infection. If she gets worse here is what it might look like and the interventions that may be considered. If she gets better here is what it might look like and what the next steps would be in recovery. Tell them what modern medicine can do support their body through acute illness, and where the end of the road is with these interventions. Offer resources. Talk about what the patient was like in health, and what they would want.

If the patient is stable remind family that things can change very quickly but their loved one is in a place where there are professional eyes on them every moment. They are as safe as can be guaranteed. Now might be the time to get sleep since however the ICU stay ends, be it in acute care and recovery or in planning a memorial, laying a body to rest, and grieving, they are going to need strength for the next part.

And you know what? Tell the family what the numbers on the monitor mean. They stare at them for hours not knowing what this alien language is besides scary and important. When you go to silence an alarm like you do twenty million times a day remember to explain why. The lead fell off, the probe is not reading properly. Nurses see the bad wave form and know the data is garbage, but patients and families hear the alarm and think emergency. Communication, comrades.

*Different people are going to want different amounts of information at different times. Nurses assess that first, K? What’s appropriate and when is a soft skill. One pro-tip, and this counts for life as well as nursing: you don’t know how they feel. Don’t say that.

Good Lord “Mercy Street”

I’m obsessed with our image. On a scale of 1 to Gray’s Anatomy (1 being no pain, Grey’s Anatomy being the worst pain you’ve ever felt in your life), most portrayals of nurses on TV and in the movies land in the 7 region. The faces pain scale really works for this:
Pain scale

A few years ago PBS began airing the BBC period nursing drama Call the Midwife, a darling and coherent if sentimental portrayal of post-war era midwives working from a convent in East End London. I like this one even if later episodes did risk giving me cavities. Maybe it reads as authentic because it it drawn directly from the not fictional nursing memoirs of Jennifer Worth, who lends her stories and her name to the main character. Nursing is a real thing in this series.

I guess it was inevitable that in the wake of its success America would give nurses a stab with the new PBS series Mercy Street, about a Union Civil War Hospital set in (my hometown) Alexandria, Virginia. Oh my hopes were high! This show is, so far, unforgivable. It hurts worst. I could feign indifference when it came to the laughable accents, the absurd and awkwardly drama-less rape scene in the first half of the second episode (give me time to love the characters if you’d like to break my heart!), but the characterization of the only actual nurse as the mean and heartless foil for our two sweet and well meaning hero nurses is so disgusting that it can not stand, man.

The uptight bitch nurse is to be hated because she trained with Florence Nightingale in the Crimean War and is suuuuch an expert at things like sanitation and wound care. She is so bossy about telling new nurses how to do things in a safe and evidence based way! The lady knows what she is doing professionally and seeks to better her field and improve the health outcomes and safety of the soldiers in the hospital’s care. What a B. I bet she hasn’t had sex in forever, she’s such an ice queen. Nope. In the second episode we see her sleeping with her boss, the corrupt doctor! So that’s how she got the gig.

Our two heroes are nurses who have no training or experience, but never you mind. They have the calling to serve their fellow man. To provide comfort in times of need. They have tender feminine hearts and strong womanly wills and as god as their witness they shall never let a boy die without a soft hand to hold! They will try to get some food for these soldiers too!

I said I could overlook the accents, they have nothing to do with nursing, but let me just tell you that the southern hero nurse is a native Alexandrian (a city two miles from DC) but makes sounds like her cotton plantation just caught on fire. Robert E. Lee did not sound like Blanche DuBois. Or Blanche Devereaux. But this woman does.
blanche

So. I’m sure our hero rookie nurses will use their female intuition and woman-in-a-man’s-world grit to become invaluable assistants to the doctors they work with. But I won’t be around to watch.

I’m going to watch Nurse Jackie.

PS- I tried to find the script writers on IMDB to no avail–but there were about 1200 costume consultants. The costumes are fantastic. The script? What script.

Poems for the MRI

No matter how much time I do in the MRI I always go in a nervous wreck. My favorite writer and spirit guide David Rakoff (whose death nearly three years ago from a sarcoma secondary to radiation treatment for lymphoma in his 20’s has left the saddest and most fearful absence) gave some fantastic advice about surviving time in “the tube” in an interview well before I had regular dates with the scanner. I’ve taken it to heart. Keep your eyes closed, breathe, and recite your favorite poem to yourself.

As a new nurse let me remember that sending a patient for scans will become routine for me, but it will never be for them. Let me validate fears and take time for words of comfort and advice (eyes closed, someone is always watching out for you, it gets warm in there, it is very loud, think about what music you’d like to listen to, know you are safe).

David Rakoff recites his favorite poem “Letter to NY” by Elizabeth Bishop:

I recite mine “Birches” by Robert Frost (one exhausted take, please forgive):

Neil Gaiman recites “Jabberwocky” by Lewis Carroll:

In my opinion, a memorized poem is one of the best things a person can have. Useful in any number of situations.

(GOOD NEWS AFTER THE ARTICLE) This study shows so much of what’s wrong with medical research today | The Incidental Economist

This study shows so much of what’s wrong with medical research today | The Incidental Economist.

I won’t wade too deeply into this pool right now. Every moment I spend is borrowed time from NCLEX studying. But it’s worth mentioning that despite the incredibly difficult environment of academic research I see all around me nurse researchers doing what nurses are known to do–finding a way to make it work. They are making efforts to conduct unit-based research and if appropriate expand evidence based practice to other units and through professional networks to outside health systems. This research focuses on patient safety, quality improvement, and money savings to patient and health care system. Simple, cheap, and effective are markers of success. The example of using the blood pressure cuff to reduce kidney damage in cardiac surgery is right up the alley of unit-based nursing research.

Recognizing bedside nurses as professionals with the capacity to contribute in this essential way to the improvement of care (and bottom line) is mandatory for health systems moving forward. We are endlessly capable when given the time, the tools, and the support to make positive changes. It’s a super bonus that we aren’t stuck with the difficulties ($$$, popularity contests) of grant-dependent research.

At the health system I trained in a nurse is championing Enhanced Recovery After Surgery (ERAS) protocols. Unit by unit she is getting buy in and rolling it out. I’ve seen her data: it is significant. Patients are going home sooner and healthier.

So my plea to my fellow nurses is publish your work! Read each other’s studies! Let’s flex our skills. Let’s brag on each other. There’s a lot to be proud of.

Poetry Monday

Saturday I had the pleasure of listening to Margaret Mohrmann give the keynote at the UVA’s End-of-Life conference. Blow. Me. Back. The weight of the subject matter and her nimble language. The stories steeped in years of experience ecclesiastical and medical. Is frank compassion a thing? I think it may be her thing. One of the two times she made me well up (for my patients, for my loved ones, for me, for my fellow RNs & MDs, for humanity):

A Blessing for a Friend on the Arrival of Illness
by John O’Donohue

Now is the time of dark invitation
beyond a frontier that you did not expect.
Abruptly your old life seems distant.
You barely noticed how each day opened
a path through fields never questioned
yet expected deep down to hold treasure.

Now your time on earth becomes full of threat.
Before your eyes your future shrinks.
You lived absorbed in the day to day so continuous
with everything around you that you could forget
you were separate.

Now this dark companion has come between you.
Distances have opened in your eyes.
You feel that against your will
A stranger has married your heart.
Nothing before has made you feel so isolated
and lost.

When the reverberations of shock subside in you,
may grace come to restore you to balance.
May it shape a new space in your heart
to embrace this illness as a teacher
who has come to open your life to new worlds.
May you find in yourself a courageous hospitality
towards what is difficult, painful and unknown.

May you use this illness as a lantern
to illuminate the new qualities that will emerge in you.
May your fragile harvesting of this slow light help you
release whatever has become false in you.
May you trust this light to clear a path
through all the fog of old unease and anxiety
until you feel a rising within you,
a tranquility profound enough to call the storm to stillness.

May you find the wisdom to listen to your illness,
ask it why it came,
why it chose your friendship,
where it wants to take you,
what it wants you to know,
what quality of space it wants to create in you,
what you need to learn to become more fully yourself,
that your presence may shine in the world.

May you keep faith with your body,
learning to see it as a holy sanctuary
which can bring this night wound
gradually towards the healing and freedom of dawn.

Making good news sad (it’s what I do) and a poem/incantation

I am cancer free, 1 year. A reprieve lasting who knows how long. Feeeeelings.

This week I was spared the ax and I saw it come down on strangers. Have I mentioned how odd it is to be consumed with concern for your own mortality when the study of mortality is consuming your days?

Borrowed from Micheal Swanberg, the only guru I’ll accept (if he’ll have me):

Let me respectfully remind you
Life and death are of supreme importance
Time swiftly passes by and opportunity is lost
Let us awaken
Awaken, take heed
This night your days are reduced by one
Do not squander your life.

“This is a lesson in you never know which day will be your last” –ICU preceptor

image

At the community hospital we don’t generally see extremely sick patients. We see a lot of patients who are finishing a long battle with chronic lifestyle-related illness. At the end of their rope. Not many in our ICU are in the grip of acute critical illness. Yesterday I saw my first patient in that category. And as we were running three vasopressors, fluids wide open, assisting in placing central lines and arterial lines and monitoring central venous pressure and ever-tinkering with settings on the vent in a desperate attempt to keep our walked-into-the-ED-with-a mild-URI-a-day-ago patient alive, I had a little thought. This is when I want critical care in my life. This is what we do best.

We are no good for the end-stage congestive heart failure patient. We often prolong suffering in the quest for unattainable health, or in the absence of goal setting or planning. See Being Mortal.

But this patient needed all of the antibiotics, all of the drips, all of the chest x-rays, labs, cultures, all of the lines and vent and monitoring, all of the time of the best nurse on the floor. All in a desperate attempt to keep her alive long enough to recover. Which, I can’t stop worrying, was in vain. But even if, this was the patient that could have been given life back by the invasive, painful, and expensive interventions we have on offer in the ICU.

I don’t have an advanced directive at the hospital (don’t tell my nursing profs). I promise that If I had a chronic severely debilitating and worsening illness I would file a DNR/do not resuscitate (but preferably an AND/allow natural death). For now I don’t trust our system to distinguish the scenarios in which I want or don’t want a ventilator. I wrote out a directive and gave it to a loved one along with specific details about what quality of life means to me. If need be they can bring it to the bedside.

You don’t know when trauma or acute illness might give your shoulder a tap. If I’ve got a chance give it to me. And I want your best nurse.

PS- I know I’m on ethically shaky ground. This is my opinion on this day at this time, emotional and not all that well-informed. It’s Wednesday and I am wrung out already.