Friday, September 20, 2019

Death Nurse Film Fest V-1.3 (2019) - Bubba's Dumb Rass

Maybe not so dumb

Here's an old favorite, an attempt to blend information with entertainment. One of my biggest nursing bugaboos is the casual and unhelpful use of words like agitated, sedated, and confused. They're problematic because they can be interpreted so many different ways. Communication, decision making, and tracking progress is so much easier when everyone is on the same page about describing what they see.

So, here's a look at the Richmond Agitation Sedation Scale (RASS). It can help us all be more specific about what's going on. Narrated by my BBC-British-voiced friend Adam Wheeler with illustrations by Ahna.

Thanks for watching. See you next time.

Thursday, September 19, 2019

So Edo Says No No

no more mister nice guy?

If you're late to the game

I guess if Edo's not going to listen to the good stuff, we might as well drag out some horror stories. 

Her's one I posted on October 10, 2017:

It's a pretty cranky piece, but it's about a pretty serious problem that persists. 

I was certain to include important educational material about delirium that's simple, straightforward, and creatively presented through YouTube by noted delirium experts David Meagher and team. 

When you get lemons, make a souffle.

If you want to read more about nonsense, onward...

I was surprised to see that Edo blocked me - ugh, that sounds like something out of middle school. 

Still, I was surprised to see that Edo blocked me, and went over to the NHPCO website to see if maybe I could send him a note. 

Hi, Edo:

I'm not sure what blocking someone on Twitter accomplishes, unless of course that someone is actually a bot.

But, seriously, I'm not a bot. I'm an expert nurse in this field, and was the primary caregiver to my wife Jeanne through her decline and death from Alzheimer's. We used outpatient palliative services and community based hospice. It was an adventure. I understand this work from both sides of the bed, and am committed to making it better.

I hope you still find a way to enjoy #WhoseHospice Stories for Info and Edo, the series I've been posting at my blog that was prompted by your request last month, when Michael reported on Twitter about how a VITAS office in Florida failed his father. You wanted accounts of hospice going "above and beyond," as well as "horror stories."

I think it's important for patients, families, clinicians, and the community to understand more about advance care planning, and their options for facing serious illness and end of life. So many ways into these topics. 

Best, Jerry

I got an email response from the org's Senior Director of Communications and Digital Strategy, Amanda Bow

Dear Mr. Soucy,

Thanks for reaching out to us at We are always interested in learning more about the experiences hospice patients and families have, both the good and the bad. I appreciate your expertise and commitment to improving hospice and palliative care. We support the hospice and palliative care community and we advocate for quality, compassionate, and compliant care. With that, we also know how important it is to increase transparency and education, and we are working with many folks to make that happen.

If you have any questions, please feel free to send me an email.

Best, Amanda

I did have a question for her - what's Edo afraid of?

Also too: Wait - What? "Compliant care?"

Thanks for reading. See you next time. We still need to finish the story about Jack and Jill and Golf and the Hill.

Thursday, September 12, 2019

Death Nurse Film Fest V-1.2 (2019) - Ice Cream, a Love Story

"I dreamed I saw you in an ice cream parlor, 
drinking milkshakes cold and long."*

Ice Cream, a Love Story (2015)

The first collaboration with my daughter, who illustrated this story about a loving couple making their way through the minefield of serious illness. We developed it in late 2015 as part of a presentation at a local conference for hospice and palliative clinicians, but didn't have it finished as a video soon enough - I narrated it as a slide show.

The narrator is Redd Horrocks, an amazing voice actor in the UK. I got royalty-free music at Bensound.

A young version of Jeanne was the model for Suzy, and I was the model for Mark (except for the hair).

Death Nurse Film Fest V-1 (2019)

V-1.1 - Boo Boo interviews Jessica Zitter

* That's a line from 'Five Years' by David Bowie. Here's one of many terrific performances, this with a toned-down Ziggy Stardust and the Spiders from Mars.

David Bowie is helping me grieve

Jeanne and David Bowie died a few days apart, and were also close in age. My last days with her included a lot of his music, and it's been that way ever since - the music, I mean.

The lyrics and sentiments in this song are also tightly tied to our experience, because the overall trajectory of her illness took us through a period of about five years, from mid-2010 to January 2016.

Five Years
David Bowie

Pushing through the market square,
So many mothers sighing
News had just come over,
We had five years left to cry in

News guy wept and told us,
Earth was really dying
Cried so much his face was wet,
Then I knew he was not lying

I heard telephones, opera house, favorite melodies
I saw boys, toys, electric irons and T.V.'s
My brain hurt like a warehouse, it had no room to spare
I had to cram so many things to store everything in there
And all the fat-skinny people, and all the tall-short people
And all the nobody people, and all the somebody people
I never thought I'd need so many people

A girl my age went off her head,
Hit some tiny children
If the black hadn't a-pulled her off,
I think she would have killed them

A soldier with a broken arm,
Fixed his stare to the wheels of a Cadillac
A cop knelt and kissed the feet of a priest,
And a queer threw up at the sight of that

I think I saw you in an ice-cream parlor,
Drinking milk shakes cold and long
Smiling and waving and looking so fine,
Don't think you knew you were in this song

And it was cold and it rained so I felt like an actor
And I thought of Ma and I wanted to get back there
Your face, your race, the way that you talk
I kiss you, you're beautiful, I want you to walk

We've got five years, stuck on my eyes
Five years, what a surprise
We've got five years, my brain hurts a lot
Five years, that's all we've got
We've got five years, what a surprise
Five years, stuck on my eyes
We've got five years, my brain hurts a lot
Five years, that's all we've got
We've got five years, stuck on my eyes
Five years, what a surprise
We've got five years, my brain hurts a lot
Five years, that's all we've got
We've got five years, what a surprise
Five years, stuck on my eyes
We've got five years, my brain hurts a lot
Five years, that's all we've got
Five years
Five years
Five years
Five years

Source: LyricFind
Songwriters: David Bowie
Five Years lyrics © Tintoretto Music, BMG Rights Management

Wednesday, September 11, 2019

Death Nurse Film Fest V-1.1 (2019) - Boo Boo Interviews Jessica Zitter

a doctor who takes direction

I've got a handful of drafts for blog posts, along with some other projects that I'm juggling, so until I can get them into final form, which I will, I thought I'd launch another idea that's been kicking around - a film festival celebrating my student films from the past couple of years, hereafter known as Death Nurse Film Fest V-1 (2019).

I'm going to post one of my own films each day for the next several days, however many days as I have student films. After that, I will post the film made by someone else that I believe deserves the title of 'Best Film by a Nurse in My Personal Opinion,' and will award it the Death Nurse Film Fest V-1 (2019) Golden Swab of Excellence.

I'm happy to start this year's festival with a short documentary featuring Jessica Zitter and the indomitable Boo Boo. We did this as part of the June 25th screening of Extremis.

Let your senses feast.

Posts I'm currently working on:

Sunday, September 1, 2019

#WhoseHospice Stories for Info and Edo, Part 2

Still three nice guys on the same page, tra la

Get up to speed with Part 1 here

Jack and Jill and Golf and a Hill, Part 2

The spot was perfect, and I was just starting to wonder if anyone had brought Jack's clubs to the graveside service, when I saw it leaning smartly against his box of cremains, the club he was most fond of - a vintage Spaulding Executive 7 wood, marketed to women golfers.

“You can laugh all you want,” Jack had said to me not long before, gesturing to the wall by his hospital bed where it hung like a favorite fishing rod. “But I scored two Aces with that ladies’ club.”

“Now he sleeps closer to that ladies’ club than he does to this lady,” Jill chuckled. “That’s what it means to get old.”

They sat as closely together as they could, holding hands - Jack lying in his bulky recliner, Jill erect on her electric scooter.  We were talking about his illness, and how it began. 

“I played six rounds in the last two weeks of April. Eighteen holes every time. I felt great. I won a few, and a couple of early tournaments were coming up, when - BAM! One morning my back started to hurt, and by noon I was crying to go to the hospital.” 

“He never once complained before that. Never,” Jill said. “He never missed work, and never missed a chance to play golf. I called the ambulance. Our friends took me to the hospital for the next few days.”

Their medical team on the Cape quickly diagnosed Jack’s advanced cancer. At the urging of their adult children, he and Jill agreed to return to their former home, where they could explore treatment options in nearby Boston. 

Jack decided against that plan somewhere along the ride from the Cape. “I was miserable. In pain. Scared. Scared for her. I wanted to throw up, jump out of the car, do something, and I knew it was just going to get worse and then I’d die. I couldn’t see myself going in and out of Boston, feeling sicker than I already did, putting everyone else through that for who knows how long? And for what?”

He shrugged, “So we ended up calling you guys.”

Jill dabbed at her cheeks with a fresh tissue.

“Well, not right away. I needed to convince the boss. Once she agreed we started singing that beautiful song by Frank Sinatra, you know, the one from his later years…”

Here they put their heads together, eyes closed, arms around each other, and sang -

“And now, the end is near 
And so I face the final curtain
My friend, I'll say it clear 
I'll state my case, of which I'm certain
I've lived a life that's full 
I've traveled each and every highway
But more, much more than this 
I did it HER way!”

To be continued...

Thursday, August 22, 2019

Vedro con mio diletto

Antonio Vivaldi "Vedro con mio diletto" 
from Il Giustino 
by Jakub Józef Orliński (counter-tenor)

I will see with my delight 
Vedrò con mio diletto 

The soul of my soul, of my soul 
L'alma dell'alma mia, dell'alma mia 

The core of my heart 
Il core del mio cor 

Full of content, full of content
Pien di contento, pien di contento

I will see with my delight 
Vedrò con mio diletto 

The soul of my soul, of my soul 
L'alma dell'alma mia, dell'alma mia 

The heart of this heart 
Il cor di questo cor 

Full of content, full of content
Pien di contento, pien di contento

And if from the dear object 
E se dal caro oggetto 

Far be it convien that it is 
Lungi convien che sia, convien che sia 

I will sigh with pain 
Sospirerò penando 

Every moment
Ogni momento

I will see with my delight 
Vedrò con mio diletto 

The soul of my soul, of my soul 
L'alma dell'alma mia, dell'alma mia 

The core of my heart 
Il core del mio cor 

Full of content, full of content
Pien di contento, pien di contento

I will see with my delight 
Vedrò con mio diletto 

The soul of my soul, of my soul 
L'alma dell'alma mia, dell'alma mia 

The heart of this heart 
Il cor di questo cor 

Full of content, full of content
Pien di contento, pien di contento

Monday, August 19, 2019

New Series! Stories for Info and Edo #WhoseHospice

Three nice guys on the same page

So a thing ("service failure") happened recently at the intersection of hospice, social media, and the privileged air breathed by thought leaders. Among other reactions it resulted in an offer from Edo Banach, President & CEO of the National Hospice and Palliative Care Organization. "He previously was a Partner in the firm of Gallagher, Evelius & Jones in Baltimore, MD. Prior to that..."

Edo makes an offer w/ typo

We'll hold off on the horror for now

Relevant to our story

What a great chance to start telling stories that could maybe help others understand a little bit more about what happens in hospice.

You know, what really happens.

Jack and Jill and Golf and a Hill, Part 1

Here's a story about Jack and Jill and an awesome cemetery plot on top of a hill that was also an absolutely perfect tee box from which to launch a sweet straight 200+ yard drive into the clear crisp blue sky of this late September morning.

Jack’s ashes, which I now know are more accurately called ‘cremains’ - cremated remains - were nestled in a tastefully crafted wooden box which sat on a small pedestal in front of several tastefully gorgeous floral arrangements that accented and complemented the near-peak beauty of New England’s best time of year.

There also was a uniformed military color guard including flags, a bugler, and rifles.

Jack was an Army veteran, but couldn’t enlist or get drafted until late spring ‘45. He got sick shortly afterwards and spent three months in the infirmary at a fort in New England, not all that far from his and Jill’s hometown. Certainly closer than Europe or the South Pacific.

After the War, if he got the chance, Jack might casually mention he’d been shot in the Army - with a hypodermic needle. Jack loved jokes, and it was hard not to laugh out loud when I remembered some of them during his service.

War over and discharged, Jack made the short trip home and married his high school sweetheart. Jill and Jack got to work building a house and making Boomers - Townies in a town in the middle of that swath west of Boston labeled leafy, liberal, and loaded. 

These days the place is jammed with coffee shops, weird-looking dogs, and sports cars favored by white guys coping with mid-life crises.

Jack worked in the school system. Jill was a secretary in various Town Hall departments. They retired to the Cape - Cape Cod, the flexed right arm of Massachusetts sticking out into the Atlantic like it’s just about to tell somebody to buzz off - and for the next twenty years or so enjoyed the life of Riley as it plays out down there.

I met Jack in early August, just after he had been reduced to shuffling between a newly-installed adjustable bed, a shiny bright white plastic and aluminum commode with bucket, both courtesy of his Medicare hospice benefit, and a favorite recliner.

His therapeutic furnishings, along with a nightstand, guest chair, and wall-mounted flat screen TV had been arranged in a spacious alcove off the kitchen-dining room. It was convenient and semi-private at the same time. Sliding glass doors at the far end opened to a small deck and tidy back yard.

Jack said he needed to keep moving for as long as he could - “Even if it’s just swinging my ass from here to there.”

He admitted the pain was pretty bad, but insisted he could tolerate it well enough for now with some help from a small dose of opioid and a bigger dose of fortitude.

“This ain’t nothing, kid. Really. Did you know I got shot in the Army?”

The spouse in these stories often has their own health challenges. Jill was hobbled by degenerated joints and persistent pain that forced her between wheelchair, electric scooter, some other place to sit, or bed. 

Jack and Jill hadn’t been outside of their adult child’s home in several weeks. Years ago it had been their home. The place at the Cape was empty, waiting to be sold. It was the end of the line.

“You don’t have to remind him he’s dying.” 

That’s what Jill said when she greeted me at the door on my first visit. She looked like she may have been crying - puffy, red-rimmed eyes, sniffling, damp handkerchief balled in her right fist.

The sound of sniffles and electric scooter - whirring motor, squeaky rubber tires - followed me through the kitchen and into their impromptu hospital nook. Jack was leaning back in his recliner, eyes closed. When I got within six feet he opened them and looked straight at me. 

“So, you’re the Grim Reaper?”

to be continued...

Also relevant to our story

Thursday, July 25, 2019

One year, two CEO's, and lots of money.

Disclosures: I became an employee of this agency when it acquired the one I was working for. Here’s my profile on LinkedIn. Jeanne and I were enrolled in the agency’s outpatient palliative care program from January to October, 2015.

The longtime reader of this blog knows I like to page through a non-profit hospice’s IRS Form 990 to help get an idea of what they’re all about. It provides useful information about a hospice agency’s finance and operations, including the scope of their activity and how much their executives are paid.

There are easily over 50 standalone hospice agencies and corporate hospice chains here in Eastern Massachusetts. Some are well-established in their communities, others have been attracted here by the smell of death and money.

One of the agencies I follow rebranded itself a few years ago as ‘Care Dimensions.’ They were founded as Hospice of the North Shore - not ‘North Shore Hospice,’ which would have been my pick until I realized it’s pronounced ‘Nawth Shaw,’ and best articulated through lightly-clenched teeth and upturned chin.

Back in 2010, I was an RN case manager at the hospice agency owned by local behemoth Partners Healthcare as part of its "Partners Healthcare at Home" post-acute portfolio that also included rehab and home care, when we were suddenly sold off to Hospice of the North Shore because Partners wanted out of the hospice business for some reason.

That transaction bought me a new employer with the revised name phrase, ‘Hospice of the North Shore and Greater Boston.’ That was the start of their growth from an average daily census of about 350 to the current ADC of 1,000+/-.

Yikes! That's a lot of patients. They need a lot of nurses. I wonder what's the average case load for an RN case manager working with patients and families in the home - 10? 15? 20?


The new name Care Dimensions has a special irony, since the agency that was under Partners’ umbrella had previously passed through a series of transactions and originally had been named, ‘Health Care Dimensions.’

I wonder if some consultant was actually paid to come up with the idea…

I’ve been looking at Care Dimensions’ 990’s for as long as I’ve been looking at 990’s, and one of the things that’s always stood out is how much they paid their longtime and now-former CEO. She easily out-earned, by a few hundred thousand dollars, her next highest-paid Massachusetts CEO colleagues, all of whom headed combined nonprofit home care and hospice agencies.

She announced her resignation in early 2016, and in May 2017 a new CEO finally took over. The local newspaper also seems to be interested in CEO salary.

The agency’s 2017 finally became available through GuideStar not long ago, so I looked through to see if the new CEO was being treated as well. Here's what I found:

$284,931 + $726,451 = $1,011,382

According to the financial information filed with the IRS, it seems Care Dimensions paid their former CEO $726,451 for working January-April, and $284,931 to their new CEO for working May-December. At least, that's how I read it.

So I reached out by email to their chief operating officer, to see if I was reading things correctly:

“I hope my note finds you well on this sunny picture-perfect June day. 

I was looking at the most recent (2017) Care Dimensions IRS 990, and appreciate your help in clarifying something. Since that was the year your CEO changed, both are listed in Part VII Compensation of Officers, etc.

Diane's listed compensation is $726,451. Pat's is $284,931.

It's also noted that Diane was CEO through May 2017, and Pat became CEO effective May, 2017.

My questions:

- Are these the amounts each was paid for the full year? If so, does that mean each were paid a full year's compensation, but each only 'worked' for half of the year?

- Or is their compensation based on having worked for about half of the year? If so, does this mean that the annual compensation for each is (roughly) twice that listed (~ $1.4 million for Diane, and ~$606,000 for Pat)?

I guess the compensation information on the form 990 for 2018 would be helpful in answering this, since Pat would be the only CEO listed. But that form isn't available through GuideStar yet.

Anyway, thanks in advance for shedding some light on this."

I didn't hear back after a week, so reached out to the CFO by email, since after all this is about accounting and finance.

When again I didn't hear back, I called the agency and to my surprise was put through directly to him. I think he was surprised, too.

He apologized for not responding to my email, and added, "The agency's policy is to not discuss compensation." I don't know if he meant just executive compensation or everyone's at the agency.

When I asked if my understanding was correct - that the agency paid two CEO's combined over a million dollars, and that each CEO worked only 4 and 8 months, respectively - he responded that the Form 990 "is very complicated" and required Care Dimensions to hire an accounting firm specializing in them.

He also insisted my reading of the data was not correct, but wouldn't say how or why because, "The agency's policy is to not discuss compensation."

That's some catch, that Catch-22. It's the best. 

I also came across this little nugget:

How many nurses does $700k get you in Eastern Mass?

I don't know what Care Dimensions pays its nurses, or if they've also gotten bonuses for doing the work that comes with a climbing census. I'd like to ask their executives, but since their policy is to not discuss compensation perhaps someone else could speak up.

Thanks for reading. See you next time.

Previous posts about the IRS Form 990

Searching for hospice at a place in Massachusetts, Part 1

Boo Boo talks $$$ and non-profit hospice

Thursday, July 11, 2019

Nursing orgs resisting concentration camps and genocide - so far, not so good

It sounds like a simple charge, and it is - leverage your privilege. It means we need to use our advantages to benefit more than just ourselves.

Simple and easy are two different things. The privileged act to protect their privilege, and at most give over the tinniest crumbs with great reluctance, loud complaints, and never for very long.

Organizations exist to perpetuate themselves, and reward those who protect the organization's interests most fiercely.

Those are my general observations. Your mileage may vary, and I'm open to hearing from those who think otherwise. But, those are my general observations.

I thought of a question to ask nursing professional organizations - How are you leveraging your privilege (money, members, media platform, political relationships, etc.) to openly stand in resistance to the genocide currently taking place along the Southwestern US border, and to the concentration camps where it is taking place?

I thought of a way for nursing orgs to respond:

First, by watching a recent 56-minute film on YouTube called, "Caring Corrupted," produced by the Cizik School of Nursing featuring contemporary nurses talking about nurses and nursing organizations in Nazi Germany who supported and participated in genocide. 

In case you missed it, the film is about "nurses and nursing organizations in Nazi Germany who supported and participated in genocide."

After watching the film, I ask nursing orgs to do the work to earn a passing grade in a seminar put together especially for nursing orgs. 

You can read all about it in my post, Seminar: How nursing organizations are leveraging their privilege to resist concentration camps.

The seminar is modeled on Howard Dean's seminar on democracy: participants can earn a passing grade of 'D' by voting (literally the least you can do); earn a grade of 'C' by donating money to a cause or candidate (maybe a little painful for a moment, but still easy); earn a grade of 'B' by knocking on doors, making calls, and otherwise working on behalf of a candidate or cause (nice work, keep going); and earn an 'A' by running for office or serving on a government board, committee, or similar capacity.  

So, how have nursing orgs responded so far??

Let's start with my own professional org, the Hospice and Palliative Nurses Association - HPNA.

HPNA earned a grade of "NOPE" twice last year, the only nursing org I'm aware of that specifically, intentionally, and very clearly, when asked to stand against genocide, said "NOPE" not just once but TWICE.

HPNA did not sign the June 19, 2018 letter written by the Nursing Community Coalition and sent to the former administration* secretary responsible for overseeing genocide in the form of separating families at the border, even though HPNA is a member of the Nursing Community Coalition.

2018 letter of concern about genocide 
from 33 nursing orgs but not HPNA (and others)

HPNA said "NOPE" a second time, after I spoke directly with the former HPNA President to make my case, and followed up via email.

She subsequently wrote back: 


Today I had the chance to speak with Len Mafrica, HPNA's chief operating officer and expert on the use of Twitter by nurses. I've been pestering him via Twitter via HPNA's official account run by their social media guy, but it led to nothing.

I was glad for the chance to ask him about last year's decision to say "NOPE." He responded that he really didn't have any details for me about the decision, and whether there are minutes or some other record.

He noted that the Executive Committee consists of the HPNA President, President-Elect, and Clerk/Treasurer, though I'm not clear if it also includes the CEO of HPNA.

Ms Wiegand died last November. I made a donation in her memory to RAICES TEXAS, and also one acknowledging the resignation of HPNA's former CEO.(pdf)

Len noted he was aware of my request to participate in the seminar about how HPNA is leveraging its privilege to resist concentration camps, but had nothing new to report at this time, and would maybe get in touch with me after it was discussed.

I asked if the time frame for the discussion was a matter of hours, days, weeks, months, or years. He responded, "Weeks."

So at this point HPNA's transcript features:

- two NOPES -  Org says it wont do anything: because standing against genocide alongside over 30 fellow nursing organizations has nothing to do with the organization's public policy guiding principles, as evidenced by the email I received from the President following her discussion with the Executive Committee; and for some unknown reason, as evidenced by its failure to sign the June 19, 2018 letter sent by the Nursing Community Coalition, even though HPNA is a member.

- one DecBec - Replied, declined to talk (further) because: it's going to take weeks before HPNA leadership even talks about it, as evidenced by my phone conversation with Len Mafrica, HPNA's Chief Operating Officer.

More to follow. Thanks for reading. See you next time.