Thursday, April 30, 2020

Six Roles for a Death Nurse - 5/6 Activist

just following orders

Seminar: How nursing organizations are leveraging their privilege to resist concentration camps
Nursing orgs resisting concentration camps and genocide - so far, not so good


Corporate Hospice and the Hospice Industry Trade Group

searching for hospice at a place in massachusetts
Boo Boo talks $$ and non-profit hospice
Can one number tell us if this hospice is any good?
Axial tilt is the reason for the season


Sadly, not rare - #hospicefail
Hospice 101 - Part 1: Meet your nurse
New Series! Stories for Info and Edo #WhoseHospice
How to choose a hospice
Questions to ask when you're looking at a hospice
Is the hospice LGBTQ-Inclusive?
searching for hospice at a place in massachusetts
searching for hospice at a place in massachusetts, part 2

Six Roles for a Death Nurse - 5/6 Activist #NMA2020

Six Roles for a Death Nurse - 6/6 You are Witness


Six Roles for a Death Nurse - 4/6 Educator

Extremis - FREE screening snacks approved contact hours for RNs and SWs!

Welcome to my Calcutta
Death Nurse Community Open Office Hours

What it really looks like (not exactly)
Instructional Video - CPR, Intubation, and Soup

Straight up, no nonsense
Instructional Video - Advance Care Planning and COVID19

I adapted the script for the ACP video into a letter to the editor (LTE) at the suggestion of Dr. Monica McLemore. The editor said 500-word limit. They ran it, but with a glaring gap because I submitted 540. I need to follow instructions.
Advance care planning time is now - Concord MA Journal

Caring for the dead and bereaved
Options for the Final Disposition of a Dead Body

Here’s another informative and engaging program that I hope to do again, using a documentary film as the starting point, in this case ‘End Game.’ Please take - either intact for free, open source, creative commons - or build on the idea.
Reporting in pictures: Excellent brunch, people, connections, and contact hours made possible by End Game - FREE!

Cake: How to Find the Best Hospice
“When the roller coaster ride of a serious illness becomes too much to bear, we need expert clinical support to meet our final goals for care. Most of us want to avoid suffering and achieve a peaceful death. In order to do that, we need to find the best hospice.”

ATENT - A prescription anyone can write that’s simple to learn, easy to use, safe, and costs next to nothing.
Wed's clip on Thu: First steps to comfort

Hierarchy of Pain Measures, Checklist of Nonverbal Pain Indicators (CNPI) 
Assessing patients who can't communicate their pain

modified Mini Suffering State Exam (mMSSE)
video clip + survey!

Fast, Systematic, and Continuous Delirium Assessment in Hospitalized Patients: The Nursing Delirium Screening Scale (pdf)

Equianalgesia Opiophobia
Fast Fact #36 Calculating Opioid Dose Conversions

Six Roles for a Death Nurse - 4/6 Educator #NMA2020

Six Roles for a Death Nurse - 3/6 Clinician

True story

Giving Meds - Know 3 Things

"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.”

Palliative Care Network of Wisconsin
Palliative Care Fast Facts and Concepts
Just one word…

Good advice

Blog Posts About Delirium
Something about delirium, Part 1
Some more about delirium
Again with the delirium
Still more delirium
Bubba's Dumb RASS
Quick take - delirium and clinical trials
When your hospice medical director is a useless idiot
Prodrome to delirium
Cheat sheet - benzos for delirium
Delirium med cage fight
Dopaminergic drugs for delirium

Oh no, love, you're not alone
No matter what or who you've been
No matter when or where you've seen
All the knives seem to lacerate your brain
I've had my share, I'll help you with the pain
You're not alone

Six Roles for a Death Nurse - 3/6 Clinician #NMA2020

Six Roles for a Death Nurse - 2/6 Student

third movement go to 1:18:00

I was lucky to join some talented folks to produce a series of chamber music concerts about twenty (20!) years ago. 

I heard music and saw musicians as never before. Jeanne and I attended almost every concert from the first in 2000 to the last performance we could comfortably navigate in January, 2015.

In January 2008 my closest friend through this venture died suddenly. I had been listening closely to Shostakovich on my new iPod, and his music became part of the grief. I think about Bill whenever I hear Shostakovich.

Symphony No. 5 took shape beneath the cloud of Stalin’s Great Terror, and Shostakovich himself faced death.

Michael Tilson Thomas beautifully deconstructs the piece, composer, and time in the program, which also includes an exquisite performance at the Royal Albert Hall and is totally worth watching - but especially the essential third movement which Tilson says, “brought people to tears when weeping was an act of courage.” 

I’ve come to appreciate the symphony as a meditation on being diagnosed with a serious illness - the first movement roller coaster ride of treatment and hope; the second, trying to get on with life despite the challenges; dying and death (harp strings); and finally trying to explain, pretend, deny, change.

Some books I like 

Blogging about blogging

Palliative Care Grand Rounds 1.11 

With Caitlin Doughty, the Julia Child of Death

Order of the Good Death

An interview with Caitlin Doughty

“After a death, when we keep the dead body in the home, go out and dig the grave with our own hands, place the shrouded body in the grave and place the dirt onto the body, allowing it to decompose beneath the earth, what we are saying is, “we accept death as a reality, and we would like to engage with it.” 

The artist Rachel Perry changed my life when I saw her work in the 2002 faculty show at the Museum School. I later got to thank her.

Rachel Perry's Commencement Speech Montserrat School of Art 2018

More personal/professional life-changing events

Peggy Chinn and 2018 Nursing Think Tank 

Comics in Medicine at the Center for Cartoon Studies 

Comic Nurse

Some cartoons I drew

Patients and families are the best teachers
"Pay attention. Rachel Lindsay has four awesome strengths - Smart, Funny, Talented, Brave."
Rx A Graphic Memoir

ELNEC training was a powerful experience. Awesome faculty and clear message: "You know your learners and situations. Here's a toolbox - take what you need, use what works, make new stuff."

HPNA - worth it for the journal

Don't believe in yourself
Don't deceive with belief
Knowledge comes in death's release
Oh-oh, oh-oh, oh-oh, oh-oh

Six Roles for a Death Nurse - 2/6 Student #NMA2020

Six Roles for a Death Nurse - 1/6 Personal


There are many ways to practice nursing, and there are many roles for a Death Nurse.

I developed this tour for Nursing Mutual Aid 2020 to honor and share some of the people, places, ideas, and events that have brought us together.

Each Tweet leads to a page and explores one of the six roles I have served as a Death Nurse.

This is the first one. This one is personal.

I hope you’ll feel comfortable poking around as you would a favorite antique shop, chic boutique, book store, bar, livestock auction, barbecue joint, quiet forest, babbling brook, movie theater... 

Can’t get more personal

Every story starts somewhere.

I first encountered death before I was born, when antibodies attacked my red blood cells. (pdf)

We rushed to the Floating Hospital in my Uncle Jerry’s station wagon. A police car led the way. 

I came home two weeks later. Here's the receipt:

 Nostalgic hospital bill (NOT a bill)

“My personal encounters with death started early, thanks to a culture that didn’t think twice about dragging an entire first-grade class over to the convent, to pray the rosary in French while stuffed into a tiny room with several other grades, two radiators, no windows, and a dead nun.”

Six Roles for a Death Nurse - 1/6 Personal #NMA2020

Six Roles for a Death Nurse #NMA2020

six roles for a death nurse 1/6 personal #nma2020

six roles for a death nurse 2/6 student #nma2020

six roles for a death nurse 3/6 clinician #nma2020

six roles for a death nurse 4/6 educator #nma2020

six roles for a death nurse 5/6 activist #nma2020

six roles for a death nurse 6/6 you are witness #nma2020

Tuesday, April 28, 2020

Weird concept worse copy

I really wanna say more but this just isn't the time...

[Added 4/29/20]

Tuesday, April 14, 2020

A physician finally says it - will they listen?

Where ya goin', bud?

I’ve come to the conclusion that lots of people in palliative medicine are afraid to talk about death. It’s ironic but also no surprise. We’re all afraid of dying.

I think Ernest Becker had the right idea: “...death-denial often shapes our behavior in highly subtle and unconscious ways.... Medicine has death-denial built in to its core; it is designed to prevent or delay death.”

In terms of clinical practice, I don’t think it’s a good idea. I think it fails the patients and families who have/will experience death in this pandemic.

I’m glad that Amit Arya and Naheed Dosani finally broke the ice among physicians:

“... the use of a ventilator is a very aggressive form of treatment that requires the patient to be deeply sedated. And outcomes are often poor. Many patients who are put on a ventilator do not survive. Some who survive will never return to their previous health. With proper counselling and the promise of good palliative medical care to ease suffering and symptoms, patients such as the frail elderly or those with serious complicating disease, who have poorer prospects on ventilators, might well choose not to face the rigours of the ICU. In other words, they might choose to die in peace.”

One more time for folks in the back:

“In other words, they might choose to die in peace.”

Thank you!

A peaceful death is one of three viable goals for care. We can only pursue one goal at a time.

  1. Try to beat an illness, go for the cure, aggressive treatment;
  2. Try to manage an illness, set limits on measures or time frame, selective treatment;
  3. Try to achieve a peaceful death with treatment focused solely on comfort.

Clinicians tend to make things more complicated and confusing for patients and families, especially in crises and/or academic medical centers. This usually includes way too much talking, running down rabbit holes, and frustration.

So instead of “goals for care” conversations, talk about “the goal,” and assess all actions in the context of whether they support or undermine it. The National POLST form is built on this paradigm.

Thanks for reading - see you next time.

Also too:

Sunday, April 12, 2020

Friday, April 3, 2020

Because Seu Jorge playing David Bowie is helping me grieve #pallicovid

Why didn't I know about this before? I saw the movie and liked it, but completely blanked on the music. Glad to get caught up.

I developed what the Catholics call a special devotion to David Bowie in the final days of Jeanne's dying, through my immediate bereavement, and ever since - because that's the whole point of developing a special devotion.

Sometimes music is the best way to bridge gaps presented by language, culture, disability, advanced illness, or fear.

There's much more here when you need it.