Photograph courtesy of Adriana Paradisi, 2011

Recently, two nurses in my blogging community wrote about patients in pain. Joni Watson at Nursetopia posted a link to horrific videos of patients suffering in pain without proper medication, and J. Doe at Those Emergency Blues urges nurses to provide post-op patients with education along with that vial of pain medication at discharge.

Patients who are not in control of their own pain medication often suffer in pain. Here’s a composite story from my Pediatric Intensive Care experience:

I am taking report on a child less than 24 hours post-op open-heart surgery. The night nurse, who is fairly new, tells me that the only pain medication given on her shift was acetaminophen, although the surgeon ordered narcotics too. I say, “WHAT?” The night shift nurse explains she offered narcotics, but the patient’s mother, who was up all night at the bedside, refused them. Like I said, I am familiar with this routine. I have a script for it. I ask the night shift nurse to follow me into the patient’s room so she can learn it too.

In the room, I see a small child sitting rigidly in a hospital bed. An untouched breakfast tray rests across her lap on the bedside table. Above her, the green tracings of the monitor displays tachycardia (heart rate is high). The central venous pressure (CVP) and blood pressure are also high. Barney the Purple Dinosaur is singing about friendship on the blaring TV, and I feel a headache coming on. Mom at the bedside, looks like she hasn’t slept for weeks, and is clearly exhausted. I say “Good morning,” and introduce myself. I say, “So, your daughter’s surgery went very well. How do you think she is doing today, right now?”

The Mom tells me her daughter seems very quiet, and isn’t eating breakfast, which is unusual. I say “Hmmm,” then point out that all of the numbers on the monitor are high, and to me, it looks like her daughter might be painful. “By the way, the night shift nurse mentioned that you prefer your daughter receive only acetaminophen, and she hasn’t had any narcotics. Is there a reason you don’t want her to receive narcotics?”

I am not surprised to find out that someone in the mother’s family recently died of cancer, or another long disease process and at end of life was on a narcotic drip.

The mother equates narcotics with death, and is illogically protecting her daughter by preventing narcotic administration. The patient is too young to speak for herself. I educate the mom on the difference between post-op analgesia and end of life pain control. She allows me to give a little narcotic to her child, and soon the kid is eating breakfast and singing along with Barney. Her vital signs are normal, and the surgeon is very happy with her progress.

Now I work in an ambulatory oncology clinic, and I see another variation of this patient who is not in control of his or her own pain medication administration. Typically, this patient has rapid disease progression, and almost always tumor metastasis to the spine. They are easily identified by their need of mobility assistance, and are painful even lying in bed. They tend to talk to you with their eyes closed. They are too sick to speak for themselves.

A family member always accompanies them, and that person knows the name of all the prescribed medications, the doses, and when they were last given. They give a detailed report of the patient’s diet, stools, and urinary output. The patient is clean, and dressed in clean clothes. They are obviously loved.

I assess for the fifth vital sign: pain. Their body language prepares me for a high number, and I am not surprised when they report an 8 out of 10, or greater. I see on the home medication list that the oncologist has prescribed both long acting pain medication and a short acting one for breakthrough pain.

I ask both the patient and the caregiver when the patient last had pain medication. The caregiver answers, “Last night.” I ask why the patient didn’t have a dose in the morning before this appointment. The answer is something like, “He needs to walk more.” “He doesn’t eat enough when he takes pain meds.” “I didn’t think he needed it,” and a long list more. Apparently, this is a very common problem confronting hospice nurses, and Medscape has a very good article on the topic.

It is my experience when encountering this caregiver and pointing out that their loved one is in pain that they start to cry. They almost always have the vial of long acting pain medication in their purse or pocket. I get an order from the oncologist, and together, the caregiver and I treat our patient for pain.

I explain that the bone pain will not go away; it will worsen. Our patient will need more pain medication, not less.  Then we discuss loss and grief, and how painful they are. The caregiver sees their loved one floating away on a cloud of analgesics, and illogically thinks that withholding narcotics will keep them here longer. I can’t fix this for them. It’s going to happen. I provide a safe environment to talk about grief. I urge them to be brave and declare their love by treating pain. I arrange the appropriate support to protect the patient at home.

And I say a little prayer for all of us.