How Life Changes

Staffing by pizza

I floated to a different unit yesterday, one with a reputation for lousy staffing.  Rather than the typical “step down” ratio of three patients to one nurse, they often have four patients to one nurse, with multiple admissions and discharges.  This is also a unit where there are never enough supplies, and where there are often no nurse assistants or relief nurses to help.

Sure enough, within an hour of my arrival I was given an additional patient to go along with my already heavy load:  two bed bound patients (one of whom could not move at all, one of whom was on continuous morphine for pain) and a third who couldn’t ambulate past the bathroom.  All three were post-op spinal patients and required careful handling when turning and getting out of bed.  The fourth patient who arrived had had a significantly low heart rate for several hours (in the 40-50’s) and was post-op brain surgery, requiring every two hour neuro checks.

Four patients, all heavy, and no nurse assistant on the floor to answer call lights, get patients to the bathroom, bring ice chips or water.  Around three o’clock, after being on my feet for eight hours running from room to room, I called my charge nurse and said, “I haven’t sat down since eight, I haven’t had a single break, and I haven’t eaten.”  She said, “You’ll have to get another nurse to watch your patients, we don’t have any relief.”

So I gave report on my four patients to a nurse who already had four patients of her own and rushed to the break room to swallow a few bites of food.  When I returned, ten minutes later, a very large pizza had arrived, the gift of some nurse administrator. “Instead of buying us a pizza,” one of my colleagues commented, “why not send us a nurse?”  To which I replied, “Better yet, let’s have the pizza answer all the call lights.”

Did I eat three slices of that staffing by pizza?  You bet I did.

Aside from issues in patient safety (that patient post op brain surgery with a low heart rate, for example), this is just insulting to the people doing the job.  We all worked very hard yesterday, harder than we should have, for someone somewhere who thought it didn’t matter that we couldn’t provide good nursing care, or have the right supplies (no wipes for cleaning dirty bottoms?!) or the right help.  Call lights rang all day, family members loitered at the nurses station, hoping to get help, the one charge nurse took patients of her own when it all became so awful and desperate.  Yes, we survived, and yes, we made it work, but we shouldn’t have had to, and patient care truly suffered. I wish whoever thought it was okay to go through a shift like that would have come onto the floor for one second to see what it was like to work under those conditions.  I wish they had sent a nurse instead of a pizza.

Cutting, pasting and throwing things away

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I’ve been struggling with this section of my novel for several weeks now, trying different voices and points of view and writing a ton of repetitive material as I spin my wheels towards the end. I’m not in a rush but I’m not very happy with the churn either. Today I saw the pages from last week and did what needed to be done:  ripped some from the notebook, rearranged others, forced myself to move forward (out of the damn driveway where these characters had spent ten pages, literally, in reminiscence) and into the foyer.

I’m one of those patiently impatient writers, forgiving in my condemnation. I let myself take forever to make narrative progress (dreaming, swimming, stalling, treading) then wake up one morning and just lay down the law. “Shut up,” I tell these people, these characters, these stalling family members, “Shut up and just do something.”

Families

It’s often tempting to see patients in isolation — as individuals with histories, current admission goals and priorities, challenges, etc. — but inevitably patients are just as much extensions of their family systems as they are unique people with problems to solve. Family members help, and they hinder, and they almost always have their own, very prominent goals.  “Don’t give him/her any pain medication.  She/he has addictive tendencies.” “Make sure he walks, he’s a big baby and we need to push him along.”  “Tell her that her cats miss her, that way she’ll work harder to get home.”

Like denial, family “involvement” in a patient’s care is a challenge. The job at the bedside is to put the patient first.  This means medicating pain, fostering independence, promoting autonomy.  Give me a patient in isolation and by the end of the day I’ll have figured out some good ways to do this. It might include letting a patient rest, or pushing him to do more. Put a family in the room and you’ve now got as many patients as there are seats occupied.  The daughter who is worried about caring for her post-op heart surgery mother at home.  The brother who has also had heart surgery who thinks the patient isn’t working hard enough.  The son who called 911 when the patient couldn’t breathe, and wants to know if he truly did save her life or not.  And the patient who wants to seem cooperative but  really just wants them all gone so that she can get back into bed and watch TV in peace and quiet.

We like to say that families are either functional or dysfunctional, but the truth is that illness brings out the good and the bad in everyone, the hope and fear. Sick family members have everyone worried. Hospitalization puts family dynamics on stage like nothing else. In one recent discharge, two family members wore Santa Hats and wanted the patient to join in with Christmas carols. A third berated his mother-in-law about refusing a flu shot. Finally, I explained that I would speak to one person and one person alone.  “We’re here for her,” I said, pointing to the patient. “She’s the one who matters right now. Can we all agree on that at least?”

First You Make a Map

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One night in graduate school, a writing teacher gave our workshop this simple advice, when presented with a room full of overwhelm about plot and structure. As novice writers, sticking to the most basic chronological storytelling, we were asking for a slick shortcut to making things more complicated. Our leader went to the chalk board and created a hypothetical flow chart of circles and arrows, connecting dots from character to setting to place and time.

It was simple, she said.  “First you make a map.”

For the past ten years or more, I’ve been intermittently working on a novel that spans about thirty years and countless settings, a story with sticky plot problems that have halted my progress many times. I keep coming back to this novel between other projects — I still like the essential premise, and there is something strong compelling me about the characters and their story — but the plot, oy, the plot. I have a long draft with many holes and much confusion on my part about how to fix and fill.

At the beginning of the week, I went to do my morning writing and found myself sketching instead. With my teacher’s advice in my mind and my colored pens and highlighters out, I made a map. In that map, I found a few good solutions, saw connections I hadn’t made before, and committed to certain time frames that had eluded me until now. It’s taken me ten years to do this, proving that the best shortcuts show up exactly when you need them.  And that the word “first” in my teacher’s advice is really quite relative.

Denial

Is a river, as the cliche goes. But denial in health care settings is a particularly turbulent river. What do we say or do when a patient presents in a complex, difficult way? How can we make these conversations meaningful, empathetic and fundamentally truthful?

For the past two days I have cared for a patient in my unit who is 100% medically stable, ready to go home from the standpoint of the health care team. However, he is confused, combative, unable to care for himself, refusing medication, weak, a fall risk, nowhere near his baseline when it comes to mentation or activities of daily living. Due to his aggressive behavior, no rehab facility will take him. His only option is to go home and have his family care for him. He has moments where he is kind and cooperative and this is what his family sees. Then he flares up and becomes so aggressive he has to be medicated and restrained. The family asks, “Is this normal for patients after heart surgery?’ To which I reply, “It doesn’t matter anymore what’s normal, what matters is what’s happening now.”

Yesterday, this same patient was refusing to stay in bed or the chair and attempting to stand. He is a significant fall risk and can’t walk without assist. I reached out to help him . He grabbed my wrist, lunged at me and started throwing punches. I called for help. Five more nurses rushed into the room and the patient threw his tray at them, sending dishes and food flying across the floor. We called security. Six security guards tried to calm him, to no avail. We finally had to medicate the patient and place him back in restraints.

It is true that surgery can make patients confused. It is also true that some patients can become very agitated as their hospitalization drags on into several weeks. However, after a certain point, some patients don’t improve in the acute care setting, nor do they belong there. Over the phone, this patient’s daughter said, “He’s a heart patient, he really shouldn’t be tied down in bed, should he? How will he get better?”

To which I wanted to reply, “He won’t.”

Instead, I explained as truthfully as I could the situation and the problem as I saw it. As I spoke, the patient cursed me and threatened me and spat in my direction. The daughter heard her father and said, “I don’t even know this man. I have never in my life heard him act this way.” I listened, I commiserated and then I said, “The main thing is we all have to see the problem for what it is. That’s the only way we are going to solve it.”

I think she heard me, but I’m still not sure.

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War Wounds

 

Welcome Back

For many years I kept a blog, Speak Softly, that recorded (among other stories), my everyday life as the mother of a son with special needs. I also wrote a monthly column for Literary Mama, Special Needs Mama, that reached a wide audience of parents, educators and special needs advocates. In between, I published a memoir, This Lovely Life – a book that won prizes and put into words my family’s experience after I gave birth to extremely premature twins, only to have our daughter die at birth and our son survive to be that same multiply disabled boy who was the subject of so many blog entries and Special Needs Mama columns.

Our son died in 2008, at the age of eight. My book appeared nearly a year to the day after my son died. I was invited to speak at many conferences on bioethics, writing and the art of being a NICU parent. I welcomed these opportunities as they felt vital to keeping my son’s memory and my twins’ story alive.

But I also struggled during that time with my new role. I no longer considered myself to be a true voice for the special needs community. I continued to write, and teach writing, and embarked on a new journey: I went to nursing school and became a Registered Nurse. I took down my old blog, wanting to clear the space for the new words to come. I graduated nursing school in 2012 and now work in critical care, while I continue to write and engage issues in bioethics and family-centered care.

Welcome to this new blog, one whose shape and form will evolve, I hope, as I have evolved since my first blogging days, all those many years ago.