Sunday, January 28, 2018

Hats off to heart moms!

The ELNEC post
Joy Parman and Stacey Merritt (pictured)

This post from ELNEC came across my feed the other day, and caught my attention because it's an excellent example of something I strongly believe.

The link led to a news story in a Jacksonville, FL paper about an organization called The Healing Hearts Project.

The women who founded Healing Hearts call themselves "heart moms," because they're mothers who know the challenges, terrors, hopes, and joys facing children and families born with congenital heart defects.  

Their mission and goals, in a paragraph:

To provide support to families and patients as they face the challenges of congenital heart disease. Provide practical support to individuals and their immediate caregiver(s) during hospitalization. Provide emotional support from diagnosis to the post-operative period. Support hospital efforts to optimize care. Facilitate opportunities for ongoing education for both caregivers and hospital staff.

Three heart moms serve as President, Vice President, and Secretary. The treasurer is a heart grandfather. 

The leadership also includes some doctors, a lawyer, and a nurse who's also the mom of a child with special medical needs. 

Healing Hearts signals how meaningful change doesn't come from systems or clinicians, but from patients and families who know more and demand better.

Hats off to heart moms!

Friday, January 26, 2018

The abandoned nursing home, continued

With apologies to Eagles fans

There’s not much information floating around right now, except for the name of some guy at an address in downtown Chicago. It’s probably a law office, a place for tax bills and other complaints to arrive in piles and end up in folders.

We’ll see what happens with my request yesterday for public information related to the shutdown on file with the Massachusetts Department of Public Health (Mass DPH).

I just learned about some outstanding reporting by Sabriya Rice and Holly K. Hacker at the Dallas Morning News. Their piece goes deep into nursing home abandonment on a much larger scale. They report:

A stream of documented complaints from three separate states flows back to one nursing home operator: Preferred Care of Plano, which filed for bankruptcy in November.

As a reason for its financial troubles, the company has cited more than 160 “predatory” lawsuits.

When contacted by The Dallas Morning News, Preferred Care’s bankruptcy lawyer, Stephen McCartin, reiterated that point.

“It is in the best interest of citizens to have tort reform. That clearly reduces contingency-fee, ambulance-chasing lawsuits. It absolutely does have an effect,” he said Wednesday.

From 2014 to 2016, the amount Preferred Care paid in legal fees jumped fivefold to $10 million, which limits its ability to spend  money on patient care, its attorneys told a bankruptcy judge in December.

While the company portrays itself as a victim of a tort system run amok, The News’ review of state and federal inspection reports and dozens of lawsuits found that Preferred Care locations in Texas and other states have a poor track record that includes neglect, injury and death.

Yikes. Read it all…

Back at our own local abandoned nursing home, Kindred was the last corporate owner whose name appeared on the now-blank sign.

I’m going to read up at Strange Tony’s most excellent blog, Generic Hospice for much more on the machinations of Kindred-Gentiva-etc recent years. Dude knows the scoop.

Thursday, January 25, 2018

What could be sadder?

a few cards left in a window
at an abandoned nursing home

I asked someone about a nursing home in town. They replied, “I think it’s closed!” They hadn’t heard directly, but said the news was recent. I went over to check it out.

The place is locked up tight. It’s dark inside, with a few lamps and bulbs on at random, but not a hint of life or activity. High bright exterior flood lights shine from each corner and over the deserted parking lot, into the night traffic, across neighboring homes, buildings, and into the sky.

Gross light pollution.

It isn’t clear what happened, or just exactly when. A few months ago, someone said they saw several trucks and dumpsters with 1-800-OUR-CRAP (NOT a real number!) painted on the sides. “They were hauling out beds and mattresses. I thought they were just replacing equipment.”

From the very start of Jeanne’s illness, staying at home was the absolute priority. By the end of it we had set up and run our own little nursing care facility. We were fortunate to have the resources and ability to maintain control.

I looked up the place in the Massachusetts Nursing Home Consumer Information website. The other facilities in town had a link to their detailed contact and performance information. This one just had a phone number.

I called, and a helpful staffer with the Department of Public Health answered several questions, then directed me to a colleague. I’ve made a request for public information. We’ll see what happens next.

When do you think those cards might finally come down?

Friday, January 19, 2018

Death by hangnail

 from Vascular access for hemodialysis by Ahmed Halawa

Of the people I met while working in outpatient hemodialysis, I was closest to “Sid.” He began dialysis just a few months after I started working there.

Sid was relatively young, the divorced father of a married daughter with several children who lived nearby. His ex-wife had died of pancreatic cancer the previous year, and before her death the family had reconciled.

Sid had a heart attack and triple-vessel coronary artery bypass about ten years before I met him, as well as a more recent below-the-knee amputation of his left leg. He walked well with a prosthesis and did not require a cane, though his activity tolerance was poor and he became winded after climbing a few stairs.

Sid needed hemodialysis for end stage renal disease, which itself was the result of extensive diabetic nephropathy.

I later learned from his daughter that Sid had been very anxious about coming to dialysis at first, even though by then he had been through more hospitalizations and surgeries than most people. She also said that he quickly came to enjoy and value his time at the center, in part because it brought him in contact with the same group of patients and staff, three times each week.

That’s one of the advantages of working in this setting - consistent contact.

From the point of view of his dialysis treatments, Sid’s care was pretty routine and uneventful. He experienced very few of the common side effects of treatment, such as symptomatic hypotension and cramping, and his overall clearances, a measure of the effectiveness of his treatments, were generally good.

One day as I was initiating his treatment, I noticed that Sid had a small bandaid around the tip of his left ring finger. There was some slight redness under the proximal edge of the bandaid.

"What’s up with that?" I asked. "Oh, I had a hangnail the other day and pulled it out," he replied, showing me with a gesture how he had brought the cuticle to his mouth and bitten it with his front teeth.

After his treatment was underway, I removed the band-aid to take a closer look. He had a small ulceration about the size of of a grain of rice at the base of his fingernail, with redness and swelling down to his first knuckle.

I contacted his nephrologist, who ordered a dose of vancomycin for the final 30 minutes of his treatment. That was pretty much our standard protocol for dealing with infections in that setting - intravenous vancomycin, gentamycin, or tobramycin one or more times each week, with lab measurements of peak and trough values to maximize the effect while minimizing the dose.

But over the course of several weeks, Sid’s cellulitis slowly and inexorably made its way down his ring finger and onto his hand, where it affected his adjacent fingers and continued to his lower arm. The inflamed areas in turn became necrotic, until his entire left hand and forearm were hard and discolored.

Surgical intervention was ruled out, as Sid an unacceptably high risk candidate because of his compromised cardiac status - his left ventricular ejection fraction was measured at about 10% of total filling volume. Medical treatment of his infection was not successful because of his extensive peripheral vascular disease.

Also because of his poor peripheral circulation, Sid had not had a successful AV fistula implanted for vascular access during his dialysis treatments. Instead he relied on a tunneled double-lumen central venous catheter (CVC) as the portal for his dialysis treatments. CVC’s carry a high risk of infection, and one night during his treatment Sid developed shaking chills and a fever of 103, requiring immediate transport to the hospital by ambulance for possible septicemia.

I never saw Sid again after that night.

I later learned the surgeons presented him with the option of having his entire left arm amputated at the shoulder. They were candid with him about the fact that he might not survive the surgery because of his poor cardiac status.

They also noted that he would likely need to have his right arm amputated, as it too was becoming ischemic from “steal syndrome” caused by his non-functioning fistula.

Sid decided that life without one or both arms was not worth living. He chose instead to have his CVC removed and his dialysis treatments stopped. He moved in with his daughter with the support of hospice for the last two weeks of his life.

We obtained a copy of Sid's obituary, and a couple of my colleagues went to the funeral home. Dialysis staff often attend patient wakes and funerals. There's a strong sense of community and continuity in this setting. While that raises issues and challenges regarding professional boundaries, there's also the chance to "close the circle.”

Working with patients who have end stage renal disease isn’t relentlessly dreary, because there are also "happy endings," like when a patient gets a kidney transplant. When that happens, we all celebrate.

Sid's decision and outcome was sad, but it wasn't dreary. He took control, made the important decisions himself and spent his final weeks with his daughter and grandchildren, in the comfort of their home, with medication and support. Isn't that how we'd all like to go?

We got a card at the unit from Sid's daughter, thanking us for taking care of her dad through what turned out to be his final 5 months, and letting us know that he really came to enjoy his time at the unit. I also sent his daughter a sympathy card, and told her that I was glad for the chance to meet Sid. He really was a nice guy.

We also spoke with each of the other 11 patients who shared Sid's treatment time, so that all of us could acknowledge what had happened. Then we continued their treatments.

Wednesday, January 17, 2018

Giving meds? Know three things.

George Thorogood says: 
"I only know three chords. But I know 'em cold."

This is a follow-up to Monday’s Cheat sheet - benzos for delirium?

I wrote there was more to the subject than could be addressed in one post, including the importance of monitoring patients for early signs of the serious adverse effects of dopamine receptor antagonists.

It’s also prompted by a disturbing account shared by Facebook friend, namely this piece on a man with Alzheimer’s and vascular dementia who appears to have been medicated with three (3!) different dopamine receptor antagonists at once.

Many years ago I was a staff nurse in the 10-bed critical care unit of a small community hospital. That’s where I met Karen, a crackerjack nurse practitioner whose time was split between covering the hospitalist service, and being our critical care educator.

Teachers change lives. Karen certainly changed mine. She was an expert clinician filled with positive reinforcement and the kind of practical, actionable advice that still holds for me today.

Karen insisted we know three things about every drug our patients were getting:

1. Why are they on it?
2. Where does the prescribed dose fall in the recommended range?
3. What’s the worst thing that could happen?

Looking up drug indications, dose, and adverse effects is pretty easy, but that’s not what Karen meant. Of course it’s essential to research new medications, and to re-familiarize ourselves with those we haven’t encountered in a while. But it can be difficult to tease out the most important information from a lengthy monograph, or to remember more than a fraction of what’s written.

When Karen asked, “Why?” it wasn’t enough to simply respond, “Because he has high blood pressure.” She wanted to know why a particular drug had been chosen. She wanted to know that we knew the full context of the medication within the clinical situation, something more along the lines of, “He’s on this agent because the previous one didn’t work,” or “Because these other agents are contraindicated for his co-morbid condition.”

When she asked, “How much?” we had better be prepared with more than just, “Twenty milligrams.” She wanted to know that we knew if prescribed amount was beyond the maximum, in the middle of the suggested range, or not enough for the desired effect. She wanted to know that we understood potential for increased doses, and the mechanism for those changes to be effective, such as those for opioid dose escalation.

When Karen asked, “What’s the worst?” it wasn’t because she expected us to have memorized a lengthy list that inevitably included, “Nausea, vomiting, diarrhea, and itching.” She wanted to know that we not only knew how a particular drug could potentially kill somebody, but that we also knew the earliest signs to watch for, and what we planned to do if it happened.

“When you know these three things, you’re in a good position to help your patients and families,” Karen always said. “When you don’t, you better find out quick.”

Let’s apply Karen’s “Know 3 Things” to a hypothetical instance of agitated delirium and an order for 1mg oral lorazepam. Can we adequately answer all three questions?

Karen: Why lorazepam?
Nurse: Because he’s agitated?
Karen: Agitation isn’t a diagnosis.
Nurse: Well, he’s got agitated delirium.
Karen: Why lorazepam for the delirium?
Nurse: Because we want him to get some rest. He needs to be sedated.
Karen: Is 1mg adequate for sedating?
Nurse: Um…
Karen: I don’t think it is. (That’s how Karen said, “Your answer is inadequate or incorrect.”)
Karen: Is he in acute alcohol withdrawal?
Nurse: No.
Karen: What’s the first-line drug treatment for agitated delirium not associated with alcohol withdrawal?
Nurse: (Long pause) A dopamine receptor antagonist?
Karen: Good. Has one been ordered?
Nurse: No.
Karen: So, why are we giving him 1mg oral lorazepam?
Nurse: I better talk to his physician again.
Karen: Good idea.


Scenario #2 - Agitated delirium and a new order for 2mg oral haloperidol.

Karen: Why haloperidol?
Nurse: He has agitated delirium, but not from acute alcohol withdrawal. He’s getting 4mg oral decadron every morning for his allergic reaction, and hasn’t slept in over 24 hours. We’ve tried managing his environment and using other nonpharmacologic techniques, but his delirium is escalating.
Karen: Where does his haloperidol dose fal in the recommended range for treating agitated delirium?
Nurse: It’s at the lower end for the first dose. If he doesn’t improve within 30-minutes, we’re going to double the dose to 4mg. His physician wants to me to call back if that doesn’t work after another 30 minutes. We’re using Meagher’s protocol for dose escalation that says up to 100mg in 24 hours is generally safe.
Karen: OK. What’s the worst that could happen?
Nurse: EPS - Extrapyramidal symptoms, in general, but especially neuroleptic malignant syndrome. That could be fatal. My assessments from here on will include regular checks for cogwheel rigidity. I’ll flex and extend his thumb and wrist. We’re OK if the joints move smoothly, but if it feels like there’s a ratchet or cog in them, it may be an early sign of neuromuscular involvement and EPS. I’ll call his doc, and we’ll probably discontinue the haloperidol and change over to a different drug like risperidone, quetiapine, or olanzapine because they have a lower incidence of these adverse effects.
Karen: Sounds good. Let me know if you need anything.

"Sounds good" was Karen's highest praise.

Thanks for reading. See you next time.

PS - Since I mentioned George Thorogood...

Monday, January 15, 2018

Cheat sheet - benzos for delirium?

A good place to start. But it's just a start.

I drew up this chart as part of a video on delirium that’s currently in development. The video takes on medical management, including the frequent misuse of benzodiazepines for treating “agitation.”

Agitation is not a medical condition. It vaguely describes a level of psychomotor activity. Terms like “confused,” “agitated,” or “restless” can have different meanings to different people, and aren’t useful for clear communication or for making informed clinical decisions.

Mistake #1 - not knowing what we’re looking at, and calling it the wrong thing.

Saying “agitated” is only appropriate in the context of the term, “agitated delirium,” or when using the Richmond Agitation and Sedation Scale (RASS). I addressed RASS in this post, Bubba’s Dumb Rass; and delirium subtypes in this post, Still More Delirium.

RASS is a valuable tool for more clearly identifying someone’s state of consciousness along a ten point continuum, from “deeply sedated” at the lowest, to “combative” at the highest. But it was developed in the critical care setting, and isn’t familiar to most hospice clinicians.

It’s easy to understand how hearing the ambiguous term, “agitated,” could lead someone to think, “Well, let’s calm them down with some lorazepam.”

Mistake #2 - Using the wrong drug.

Mistake #3 - Using the wrong dose.

A hospice emergency kit includes 0.5 or 1mg lorazepam tablets. This may be appropriate for reducing anxiety, but is inadequate for sedation. Giving an anxiolytic dose of lorazepam to someone experiencing agitated delirium exacerbates the clinical presentation, because it disinhibits the agitated behavior.

Think of it this way - an anxiolytic dose of lorazepam is like a shot of tequila. It might be OK in the right setting, but it’s more likely that a shot or two will lead your mild-mannered friend to start talking too loud, hit on you, or dance on the table with a lampshade on his head. That’s disinhibition.

Mistake #4 - Compounding previous mistakes by repeating the anxiolytic dose, sometimes as often as every hour for several hours or more. The median pharmacologic half-life of lorazepam is about 12 hours, so piling on a series of  low doses has a much larger cumulative effect - like drinking an entire bottle of tequila one shot at a time.

The prevailing theory for the pathophysiology of delirium says it results from a disruption of specific neural pathways caused by an imbalance of the neurotransmitter dopamine. The medical treatment for delirium is based on addressing this imbalance using dopaminergic drugs (drugs that “work with” dopamine), and specifically the class of dopaminergics known as dopamine receptor antagonists.

Hospice clinicians should be familiar with five drugs in this class: the first generation, or typical, antipsychotics haloperidol (Haldol) and chlorpromazine (Thorazine); and the second generation, or atypical, antipsychotics olanzepine (Zyprexa), quetiapine (Seroquel), and risperdone (Risperidol).

Side Tip: Language matters. Refer to these drugs by their mode of action when talking to patients and families. I’d react negatively if someone told me they wanted to give my loved one an “antipsychotic,” but “dopamine receptor antagonist” sound informed and reassuring.

Benzodiazepines and ethyl alcohol affect the brain through entirely different neurotransmitters and pathways, specifically the neurotransmitter gamma-aminobutyric acid, called GABA, and the receptors GABA-A. Nothing about dopamine here.

There’s much more to treating delirium effectively than I’m able to cover in this simple chart and limited blog post, such as monitoring for the serious adverse effects of dopamine receptor antagonists called Extrapyramidal Symptoms (EPS),  like acute dyskinesias and dystonic reactions, tardive dyskinesia, Parkinsonism, akinesia, akathisia, and neuroleptic malignant syndrome.

So, what about the cheat sheet?

The first step is to be competent in assessing for delirium. The next is to understand its many causes. The third is knowing what questions to ask.

Master those, and the rest falls nicely into place.

Is delirium the result of acute withdrawal?

Benzodiazepines are the first line treatment for delirium caused by withdrawal from the chronic use of alcohol, benzodiazepines, or barbiturates. That topic is fully addressed in Schuckit’s excellent piece in the NEJM. Green light says “GO!”

Is the person who’s experiencing delirium a frail elder, or someone with advanced disease of any kind? Do they also have dementia? Are they presenting with the hypodelirium subtype? Do the goals of care for someone with agitated delirium include improved cognition or meaningful interaction with family?

These are clinical situations where benzodiazepines should be avoided, because they can increase the risk of falls and injury, magnify excessive psychomotor activity, exacerbate depressed behavior, and further cloud cognition. Red light says “STOP!”

Is the person with delirium at risk for developing EPS, or do they have Lewy Body Dementia? If so, a benzodiazepine MAY BE A USEFUL ADJUNCT that allows for a lower dose of the dopaminergic.

If they have agitated delirium, do the goals for care include substantially calming the behavior and providing uninterrupted sleep? Here again, a benzodiazepine MAY BE A USEFUL ADJUNCT that provides an appropriate level of sedation to support this goal.

Yellow means a decision to use a benzodiazepine can proceed with “CAUTION!” in particular with regard to dosing. MAY BE A USEFUL ADJUNCT also means it MAY NOT be so.

That’s it for now. Thanks for reading.

Three more essential resources for understanding delirium:

Sunday, January 14, 2018

Remembering Jeanne today

7/18/46 - 1/14/16

And every day. A little more about the story here.

Saturday, January 13, 2018

A day in the hospice life: Meatballs

I wrote this back in 2011...

I visit patients and families in their homes, which is fundamentally different from working with them in a hospital.

It’s not my turf, it’s theirs. I’m the guest. I have to earn their trusting welcome, and have to keep earning the right to return. That’s usually not a problem, and wasn’t so today.

No, today is Wednesday, which in this neck of the woods is affectionately known as Prince Spaghetti Day. It’s the day everybody sits down to steaming platters of pasta covered with thick, rich, deep red tomato sauce.

And meatballs.

Many of my patients and families are Italian, or of Italian descent. Or, in today’s case, Sicilian. There’s a difference.

Today I visited the home of Mr. and Mrs. She cooks up a big kettle of sauce every Wednesday, enough to last the week, and browns up a pan of meatballs and sweet sausage. Every Wednesday, her kitchen smells fantastic.

I asked about her recipe. She uses Tuttorosso crushed tomatoes, and pointed to the empty 28-ounce can on the counter. “And I add a can of water to that.” She also uses Contadina tomato paste, pointing to a much smaller can. “And I add another can of water with that one. I don’t like my sauce too thick.”

Mrs. doesn’t use onions, “They’re not good for my colitis,” but she does add a touch of sugar. “And I don’t cook it all day. Just a few hours.”

She makes her meatballs with a mixture of ground beef, an egg, some bread crumbs, grated parmesan cheese, dried parsley flakes, and a little bit of onion powder. “The onion powder doesn’t seem to bother me like onions do.” She mixes everything up well with her bare hands to a smooth, even consistency, then rolls the meat into portions somewhere between the size of a golf ball, and the size of a tennis ball.

She browns the meatballs and sausage in the oven, then adds them to the sauce, where they finish cooking. “My daughter doesn’t brown her meatballs, she just tosses them in the sauce. I like to brown them first. I think it makes a big difference, but, hey, everybody likes their own a little better than somebody else’s, right?”

We stepped into a small bedroom just off the kitchen to visit Mr. He has advanced Alzheimer’s dementia. His FAST score has been 7f for as long as I've been working with them. Mrs.’ devoted and exquisite care has no doubt extended his life by quite a few years.

She slowly and patiently feeds him, three times a day, every day, and over the course of about two hours, he eats a whole meatball at lunch.