Nonsensical rules are binding the hands of caregivers

Why must everything be so difficult?

Soni pushed her mother quickly into the building from the parking lot, she wore a strained look on her face.  The wheelchair appeared preposterously large for the aged figure cowering under the haggle of blankets.  They were enjoying the brisk air, taking a walk around the facility, when the elderly woman called out.  Her lips curled and she moaned deeply.

Now Soni’s mother had stopped talking months ago, but the devoted daughter had become adept and interpreting the grunts and groans.  The sound her mother was presently making, however, was different, alarming.  Her one arm was dead, lifeless from the stroke, but her other hand clenched her abdomen.  She winced in pain.

Soni had a bad feeling.  Something horrible was happening.  She beckoned to a CNA who helped her mother into bed.  I walked in moments later, completing my rounds at the nursing home.  I bent over the bedside and examined my patient.  Her abdomen was rock hard.  Her brow was furrowed.  Her breath left her mouth guardedly and fluttered before escaping.  She was suffering.

I explained that indeed, something catastrophic had happened: a bad appendix, a perforated bowl, a ruptured aneurysm.  Soni nodded at me as she held her mother’s hand.  There would be no hospital.  There would be no emergency room huddle.  Soni wanted her mom to die quietly in her nursing home bed.  The years post stroke had been difficult and fraught with misery and dementia.  Nature was asserting itself, taking back what had been forfeited prematurely.

And this was something that I was trained to do.  I ordered a sublingual form of morphine, called Roxanol.   But of course the nurse and I both knew that it was not that simple.  The miracle drug meant to keep people like Soni’s mom comfortable, can no longer be given just by doctor’s order.  Even though the vial was sitting in the lock box at the nursing station, the dying woman writhing in pain had to wait.  First a prescription had to be written and signed by hand, faxed to the pharmacy, the pharmacist than had to release the medication and issue an authorization number.  It took ten minutes in all.  Ten wasted minutes while someone suffered.

Confused, agitated, and in pain, the poor woman started to clench her teeth.  I knew that my only choice was to go to an intravenous formulation.  An IV was already in place.  But again a new prescription needed to be written, faxed, processed by the pharmacist, and a new authorization given.  This time, unfortunately, I delineated the number of milligrams instead of milliliters of solution.  The pharmacist made me rewrite the prescription and start the process all over again.  Another half an hour was lost.

Agonizing over the unnecessary pain my patient was suffering, I begged the pharmacist to hurry up.  He responded the way they always respond now a days … sorry, federal regulation!

Soni’s mother died quietly in bed a few hours later.  Once the medicine was released, I was able to bring her the comfort she so desperately needed at the end of her life.   I wish I could have been even faster.

There is a troubling trend in the regulatory atmosphere of health care.  Nonsensical rules are binding the hands of caregivers.  We are facing ever steeper barriers to basic commonsense care.  Regulations meant to protect the populace are becoming an agent of harm.

Unintended consequences of silly rules, made by naive administrators, living in ivory towers.

Jordan Grumet is an internal medicine physician and founder, CrisisMD.  He blogs at In My Humble Opinion.

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  • Kristy Sokoloski

    I agree about the nonsensical rules that make it hard for caregivers to give the care the patients need. However, what would you suggest be done to try and curtail the amount of abuse of certain medications in order to keep people from accidentally overdosing which then causes death, or to keep those that have an addiction to these medications from getting it to keep feeding their habit? Those who are in true pain such as like the patient you had and those that live with chronic pain on a daily basis really need these medications in order to keep the pain of their condition under control. However, those that end up having accidental overdoses or those that are addicts make it very difficult for the people that truly need the medicines to get them. The balance between the two is such a fine line and I wish there was a simple answer on how to solve both problems so that these kind of rules would not exist in the first place.

    • christie

      I’ve worked in these types of situations for 20 plus years and have never seen a patient overdose, this is because they do not administer thier own medications.

      • Kristy Sokoloski

        Christie,

        The overdose would happen after the patient got home if they didn’t read the instructions correctly and took it too closely together to another medication for one. So that combination could cause an accidental overdose. Another example of an overdose is those that may have taken a pill 4 hours ago and then an hour after the dose say I don’t remember if I took it earlier and then take another pill. I am going on the exaggerative limb in the latter example to show what I mean because it does happen although it’s not common.

        If there are some patients that you have never seen overdose how is it that we also have those that are addicts in this country?
        I am on the side of chronic pain patients I truly am, but we have a big problem in this country and there has to be a way to solve it so that those with chronic pain can get the meds they need. Especially if they are patients like the patient that Dr. Jordan had cared for before she died. But because of those that choose to be abusive, and those that do accidentally overdose (regardless of how uncommon it may be) rules have to be made to try and curtail the problem.
        There are also celebrities that die from accidental overdoses too. Remember Anna Nicole Smith and Heath Ledger?

        • christie

          I understand what you are saying, however I take care of patients that are never going to be in a position to be taking thier own medications-LTC. These onorous rules are in the nursing home/hospice and your argument for these burdensome rules should not apply in this setting. How would you like to be the patient and have to wait an hour or more while in severe pain ? I’m not stupid, I know these meds can cause problems such as addiction/overdose in some people but what I said was true “I have never seen one of my patients overdose”

  • christie

    Try being the nurse with no doctor present in the facility when this occurs. You have to try to reach the doctor, leave a message usually, wait for a call back, have the doctor fax the med order to the pharmacy, do the required paperwork on your end and fax to the pharmacy then wait for the pharmacy to fax a code so the med can be removed from the pixes, all the while the family member and patient are crying and asking “isn’t there something you can do?”. Ten minutes would be a miracle, try an hour or more before med can be obtained and given, all this while taking care of 30 plus patients many by this time yelling for there own needs. This is NOT patient centered care, this lunacy needs to stop.

  • christie

    Where does it say she was hospice. Sounds to me like it wasnot decided until this incident and there were no pain issues like this previously? Family possibly delayed making the decision? Am I reading this article wrong?

  • christie

    From my experience it is usually a situation like the one described that finally convinces family/patient that the time has come to seriously consider hospice and most do start the process so thier loved one can be comfortable in thier last days. Many are in denial until this occurs unfortunately even when educated about thier loved ones future prospects.