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October 2, 2015

It’s so painful to let them go…

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But how much pain are they in?

Let’s talk about hospice.  I have never worked in hospice.  I have been part of many ‘terminal weans’ in the ICU, and part of less planned ‘holy-crap’ deaths in both the ER and the ICU.  Hospice is not something I have ever been remotely interested in.

Until my family needed hospice.

When my father-in-law was dying of lymphangitis carcinomatosis, secondary to adenocarcinoma of the lung and with mets everywhere, he could not breathe. He was terrified and in great pain.  He was also a tough-guy Vietnam vet.  He told me that he would be damned if I would wipe his ass while he was dying. The VA took excellent care of him, but he didn’t want to die there either.  We took him home from ICU in an ambulance.

I briefly thought he had died on the way home, during a minute and a half long period of apnea.  He opened his eyes and smiled at me as though it hadn’t happened.  When we got home, he rallied.  He took a ride in my brother-in-law’s new truck, ate half of his dinner, and continued to chain smoke.  The hospice nurse came, and Aunt Libby picked up his prescriptions from the pharmacy. A hospice friend suggested Ativan intensol, and he had liquid morphine.  We gave him the doses around the clock.  It didn’t help.  I called hospice multiple times throughout the first night, and they simply increased the dosage. Every. Single. Time. We got him to the point of comfort, and this continued until he died.

Yes, you read that right.  He may have died from respiratory depression as a result of morphine and ativan.   Why am I not in jail? Because, hospice. And I never gave him more morphine than he was prescribed.  Not even once. We just gave him what he needed to be pain-free.  And of course, it most likely killed him.  His official cause of death was lung cancer. We will never know if I assisted him.

Death by drug overdose with a nurse is based on intent.  If you want to kill your family member for some reason, you are not providing hospice care.  You are illegally giving a lethal overdose.  Our intent was to keep him comfortable, unworried, and happy until he died. We succeeded.  It also had the happy side effect of stopping up his bowels. He was far gone by the time I had to clean up urine. (and be clear, I was honored to do it)  It took him four days to die at home.  We titrated his oxygen for comfort, and let him go on his own terms, exactly the way he wanted to.

When he began breathing agonally, a relative started to freak out.  I said, “Calm down, it is time for him to take a trip.”  He did.  He died at home, hospice supported us every step of the way, and we did not let him die in the hospital, precisely as he wanted it. We stood by while the removal team from the funeral home reverently took him away.  We laughed a lot.  We cried a bit, we fulfilled our promises to Dad…..We miss him.

Years ago, I wrote a blog post that I will paste here.  Do you see the difference?

An Exercise in Futility

Once upon a time there was a nice old Granny…

Granny was over 90, she had a great life. She had several loving children, was financially secure, and still active! She even drove at her age, and well. Not a single car accident in her lifetime, according to one of her daughters. Talk about beating the odds! 😉

Granny had a couple of routine surgeries during her life. Appy and gallbladder come to mind. Later in life she also had a CABG. She was not diabetic, had no COPD, but she had…a “Weak Heart” (diagnosis supplied by the same Helpful Daughter, who was also her medical power of attorney)

Granny developed a bowel obstruction. She was rushed to the hospital and had it resected. She had a very clear DNR order, signed by her several years ago and verified by the admitting physician. No tubes, no heroic measures. She never wished to live unless her life was her own to live. She never wanted to be hooked up to machines, to have her privacy violated by nurses sticking tubes in her body. She never wanted to lose her DIGNITY. She was a LADY, in the original and meaningful sense of the word.

Granny went into respiratory arrest on the surgery floor. She was rushed to ICU. Initially, this was somewhat appropriate. They helped her breathe, first with O2 via NRB. Granny hated that mask and pulled it off constantly. She was still aware of her surroundings. She got ICU psychosis within days, from the stress, the sleep deprivation, the infection, the pain from the surgery. They got an ABG, which was abnormal, but not abnormal enough to cause her to roll around in her own shit and moan continuously. She dropped her sats every single time someone touched her, because she was anxious and psychotic. She was not in her normal surroundings and despite the best efforts of nurses patiently explaining every procedure and new treatment from a linen change to BiPap, she lived in constant terror.

The Helpful Daughter had a talk with the nurse one night. A physician (well, actually a really inexperienced first year resident)had suggested intubation as a ‘temporary measure to help Granny breathe’ if things became more serious. Alarm bells chimed in the nurses’ cranium. The nurse gently suggested that intubation was rarely a ‘short term boost’ to a 90+ year old woman. The nurse reminded the Helpful Daughter of the wishes contained in Granny’s living will. The Helpful Daughter assured the nurse that she would never go against Granny’s wishes. The nurse had the next three days off.

When the nurse came back in, Granny was intubated and on vasopressors. She developed pneumonia, despite the best efforts of nurses, physicians, pharmacists, and respiratory therapists. The DNR order had been nullified by the Helpful Daughter. She was not going to ‘Give up on Granny’. Granny. The lady who never wanted to live without her dignity. Remember her? The one with the tubes in her trachea, nares, urethra, rectum and the central line and art line? The one that the nurses had to restrain or sedate into oblivion? Oh, yes…THAT Granny.

Eventually, a Doctor grew some balls and told Granny’s family that she would never recover from this surgery and the subsequent infection. She would never drive her car and have lunch with her friends again. Her “Weak Heart” was failing and her EF was somewhere in the neighborhood of 20%. She was shutting down.

They extubated Granny, who gasped like a fish until she died, undoubtedly still in some pain. Her children and grandchildren were gathered around, bitterly wondering aloud why someone “Didn’t tell them that the breathing tube wouldn’t make Granny better”

Granny, I humbly apologize for being too polite with your daughter. My heart broke when I saw you on that ventilator. I offer you an abject apology for not being enough of an advocate. I also promise to stick an 18 gauge needle into that stupid fucking doctor’s eye ‘accidently’ at my first opportunity.

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