Take your journal to the hospital, and a couple of pens. You never know when its seems wisest to stay awake by scribbling your way through the dark.
I was becoming desperate for the four-hours-straight stretch of sleep that is essential to steering clear of fibromyalgia pain. I could sense it hovering out there, ready to pounce on some or all of my anatomy. So, I had soldiered on until 12:30 a.m., the time appointed for the nightly meds, in hopes of getting those precious hours for the first time since entering hospital three days earlier. What an effort! Pain is exhausting.
The new medication worried me. The nurses had more or less left the decision to take 2 or 4 micrograms of the stuff with me. But what did I know about Dilaudid? A morphine substitute. Okay, that tells a person who almost never downs so much as an aspirin, nothing. So far, all I knew was that 2 mcg. wasn’t doing much for pain. I was to have 4 mcg. plus Tylenol tonight, and I was desperate enough for sleep to try the full dose.
Exiting the bed without incurring high levels of pain wasn’t possible yet. Kay had visited late that night to help with the mundane nursing tasks of toilet, teeth, a fresh undersheet in the bed, ice water to sip from. Little did she know as she padded out the door at 12:25 that she herself would not get a long sleep.
Five minutes later the night nurse arrived and wordlessly handed me the little white top hat in which meds are served. No small talk from her tonight. I asked whether she had anything for the maddening itch in the middle of my back, where the epidural had sat for three days. She indicated no. I asked if perhaps the skin lotion I had noticed parked by the sink would be helpful, and, evidently put out, she plunked the container down on the bedside table. Two days earlier, she would have been solicitous, rubbing the stuff in herself or, more likely, detailing an LPN to do it. I wondered how she thought I would reach the spine with a thorax and abdomen as sore as mine, not to mention with my gimpy right arm, which still periodically roared about a previous injury.
A cool wind had blown from this nurse since she started her shift at seven. Maybe she realised I had by now heard her own tale of her more difficult left hemicolectomy–making her suffering greater than mine, you understand–about half a dozen times? Hardly. I had listened attentively and was quite prepared to tap her experience and wisdom on the topic. Wow! A caregiver who actually knew what patients like me go through! On my arrival, she couldn’t have been friendlier. We had some nice talks.
It must have been the dressing change the previous day that turned the tide. There had been a lot of blood collecting under the nifty transparent bandage over the hug incision. At first the nurse shrugged it off, but then returned to apply a fresh dressing, perhaps having received direction from someone. She put on a fresh dressing, but it didn’t seal at the bottom; so she patched it with what she called a "two-by-four", both of us laughing and joking the way well intentioned patients and their caregivers do sometimes.
Then I took my evening stroll around the ward and trailed blood all over the floor. Oops.
The next morning my surgeon changed the dressing himself. Guess what? No leaks. He seemed a little testy, sticking the date of his dressing onto my tummy above the incision, as if someone would need a reminder.
Tempest in a teapot, knot in the bandage, typhoon in the toilet…whatever. Maybe the nurse thought I had complained? It dawned on me that the LPNs were carrying the load of the many mundane duties involved in nursing. Maybe there were ways to be a good patient, and ways to be bad.
I pulled myself together, took the pills and bedded down. Come hither, Morpheus. It should have been a quiet night. Only two of the four ICU beds were occupied. Unless the world’s biggest accident occurred in our sleepy town, the nurse, accompanied by a male nurse and an LPN, should have very little to do.
One and a quarter hours later, I was jerked out of my darling sleep by a man’s voice loudly delivering what sounded like a punch line. Loud voices were having a good time down the hall. No going back to sleep with that going on. I decided the best solution would be a stealthy closure of the glass doors of my room.
I did it. Groggily I raised the bed and sort of fell out of it, slid the doors together, used the "facility" and with the aid of a little stool and some fancy legwork, re-entered the bed. Someone must have noticed the closing door, for the sounds did abate somewhat. Maybe I could pick up the threads of sleep?
I drowsed, but kept waking in a panic, trying to find my breath. I’d never breathed like this before. What was in that drug? If I fell asleep, could breathing stop?
I wasn’t hooked up to the monitor, I realised. It had been turned off. Since 12:30, no one but me had the slightest idea of this body’s vital signs.
It seemed a little overconfident not to monitor a patient who never takes so much as a tylenol but who was now on powerful narcotics new to her, three days after surgery. If that constituted over-reaction, I sure wished someone had told me what to expect.
I was scared to sleep. Again I forced the body out of the bed and, by dint of shoving my bag close to the cute little toilet with one foot and lowering myself to the throne, rummaged around for my EmWave. This palm-sized instrument tells the holder when the heart is "in coherence" and when it is merrrily jerking along as usual. You can control your cardiac system to a large extent with a breathing technique and a thought technique. This "Hearthmath" technique has saved lives in the past, and it sure wouldn’t do me any harm now. At least it would let me know something about what the heart is doing, since I couldn’t very well turn on the monitor again by myself.
I would call Kay as soon as decent to do so, and ask her to research this stuff, this Dilaudid, and to call the GP to make me part of her morning rounds, please. Maybe I could get moved upstairs.
It was minutes to five a.m. The next dose of tylenol was an hour late, although surely the staff, if they had noticed the closing of the doors, must have known I was awake. The next load of Dilaudid was half an hour late–mercifully. But no one came until I dropped the phone, when the LPN popped a head in–but no pills came with her.
The EmWave told me I was in blue or green zone ninety per cent of the time, which I sure the hell was not. I kept up with the measured breathing, sitting up in the dark until the dawn crept through the windows. Seven o’clock and change of shift couldn’t come soon enough.
Somehow I’d made enemies. Stage Two of recovery was not going well, but I could see no exit from this familiar game. I was supposed to accept whatever staff did, without question. No rocking the boat. If I did not react to their failure to provide painkillers on schedule by screaming for more narcotics and tylenol, however, I must be faking the pain. Bad Patient.
I became Badder. The day nurse came to lecture me on taking my pills and all I could come up with was, "After I talk with the doctor, I’ll decide." That was definitely not the right reply.
On my trundles through the back of the ward, I’d noticed a poster about patient autonomy, specifically for seniors. It was a pretty impressive piece of work (although once could still see, under the tape, the title ABUSE, which was the situation the protocol had evidently originally been developed for). Hey, there’s been training going on. That’s great. Fifteen years ago, during my last big involvement with the medical community, such training had been scarce. Patient autonomy was a big topic in the new, burgeoning field of medical ethics.It was good to see the discussion migrating to all care facilities.
In those days, the concept of Patient-Centered Therapy or the Patient-Centered Approach, meaning the patient retains the authority to hire and fire members of one’s team of caregivers,was blisteringly new even in the US. I liked the idea. Obviously it patients were respected as the heads of their teams, as they were, presumably, still the owners of their bodies, they would be more knowledgeable and therefore more compliant, not less. More compliant patients, as everyone knows, result in better medical outcomes.
I’d had similar thoughts about legal clients. If only our clients understood what we lawyers were trying to accomplish, I thought, wouldn’t they shoot themselves in the foot less often? Wouldn’t that result in a reduction in the number of trials? Well, that’s another story, It’ll be a cold day in hell before most lawyers turn the fiction of "taking instructions" from a client into reality.
I was about to make the mistake of thinking the concept of patient autonomy had grown vigorous enough to be of help in fixing little problems like my medication and care.
Shortly before eight Kay, the GP, the day nurse, and my surgeon’s partner (the surgeon had left town for ten days) were gathered at the bed. I ewxplained my fear of the Dilaudid unless I was hooked up to the monitor, as the stuff was new to me. I also asked my GP if I could have some continuance to physiotherapy with the right shoulder, to help me get out of bed by myself. There seemed a satisfactory solution: there would be physio, there would be morphine, which I’d had before, and tylenol, and I would be moved upstairs.
As my surgeon’s partner moved down the hall with the day nurse, Kay and I heard her say, "Did you know the patient refused her narcotics?"
At that point a truly patient-centered approach would have dictated a return to the patient to clear up the dissonance in communication. That didn’t happen. As the weary day stretched on, neither did the morphine, the monitor, the physio, or the move upstairs.
Next morning, the same cast re-assembled at the same bed over a patient in more pain and distress after 24 hours of ibuprofen and tylenol. Could I please go home? they said. Wasn’t I ready?
I thought Kay would explode. I couldn’t sit up by myself yet, let alone get out of bed or do anything much besides read by myself. And our home was hardly fitted to be a hospital.
Again, the decisions to move me, to send a physio. Neither happened. Every several hours someone came to take blood pressure, which soared and dipped with the vagaries of pain.
The day nurse arrived for that duty about five to take blood pressure and administer an informative lecture on the subjectivity of pain. She looked to be in her twenties. I’m in my sixties. I wondered what she thought I didn’t know about pain, especially since my master’s thesis had dealt with the subject in some detail and I have forgotten more about dolorimeters than most folks, medical or not, will ever know. But hey, she was trying. And, I reflected, ICU doesn’t often have to deal with patient-autonomy issues, because people in crisis or in surgery have already given up a great deal of that autonomy for the sake of having their lives saved. Otherwise, the system wouldn’t work, and there is much to be grateful for in the way our society responds to medical crisis.. Heaven knew, I wouldn’t have survived this far without at least three life-saving surgeries. So I just shut up and practised friendliness.
She was interrupted before she could write down the BP and scurried away, saying she’d be back in five. As the end of her shift approached without her return, it occurred to me it might be a kindness to remind her. I pressed the call button.
An LPN entered, the one who never introduced herself or smiled. She deprogrammed the call button. "Why?" I asked as she cut my last communication with the desk.
"Because you don’t need it," she snapped.
She might as well have said, Because you’re a faker. Don’t call us; we’ll call you."