Monday, August 3, 2020

Existential Distress, Dignity Therapy, and Peaceful Death





















Links etc

Grech, A. Marks, A. Existential Suffering Part 1: Definition & Diagnosis; Part 2: Clinical Response & Management. J Pal Med. 2017;20(1):93-96.

Keall, R. Clayton, J. Butow, P. Australian Palliative Care Nurses’ Reflections on Existential/Spiritual Interventions. J Hosp Pal Nsg 2014;16(2):105-112.

SEINFELD - DAVID PUDDY MAD DEVILS FAN [Video]. [xBRUISERx2007]. (2011, Jun 14). YouTube.

Sinatra, Frank - My Way (Live At Madison Square Garden, 1974) [Video]. [Frank Sinatra]. (2019, Sep 16). YouTube

Listening to Francis Albert at the other end of his trajectory

Thursday, June 25, 2020

White Supremacy in Nursing and America

So the basic idea is to publish a Google presentation as one channel to distribute educational content, and encourage learners to treat it like a digital picture book. Use the controls to maximize the screen, tab through at your own pace, or let it auto-run (2 secs/slide).

Click any of the resources and references on the final page to learn more about the issues raised in the presentation.

Today's topic is white supremacy in nursing and America - specifically how some nursing and other orgs have responded to the murder of George Floyd by Minneapolis police. 

Tuesday, June 23, 2020

Celebrating Nurses Yet Again Another Time with Free Self-Paced Online Learning - Hastened Death by Voluntarily Stopping Eating and Drinking (VSED)

Press 'Play' or use the controls

Another self-paced continuing education program for clinicians, caregivers, and the community. This is 1/2 of a work in progress so still one more coming. Love the smiling baby.

Monday, June 8, 2020

Celebrating Nurses Yet Again with Free Self-Paced Online Learning - Death Care and Final Disposition

Press 'Play' or use the controls

Another self-paced continuing education program for clinicians, caregivers, and the community. One more coming. Same smiling baby.

Friday, May 22, 2020

For anniversaries and admissions to the club nobody wants to join

Yeop, still helping me gieve...

I think pretty much every song David Bowie ever wrote had something to do with living and/or dying so here's one that tells a story about what we might want to say to a loved one who's died. Going out today especially to friends and fellow club members Jack and Lucy.

Monday, May 18, 2020

Celebrating Nurses Again with Free Self-Paced Online Learning - End of Life Trajectories

Press 'Play' or use the controls

The experiment continues with a second self-paced continuing education program for clinicians, caregivers, and the community. More soon. Who can resist a smiling baby?

Thursday, May 7, 2020

Celebrating Nurses with Free Self-Paced Online Learning - Terminal Secretions


Just press 'Play' or use the controls!

This is an experiment, and I'll update soon. Thanks! 




Link to similar Google form combined post-test and evaluation


"Rosebud!"

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

HOSPICEFAIL

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


/end

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!

Nu-DESC
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

Welcome!

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:


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.

Tuesday, March 31, 2020

COVID19 Triage Policy Death Dying DNR and Ventilators #pallicovid

Also too advance care planning

My first attempt with this one was a bust because I used music that wasn't free to use.

If the royalty-free techno track in this version isn't to your liking, you can mute the sound and play my first choice - 

Who listens to the narrator, anyway?

Other recent COVID19 videos and posts

With Kia, Boo, Kaiser Robot Doctor, Always Honest Nurse, and Doctor Cigarette

Straight-up version

With Skelly and Boo Boo

How can you tell over the telly?

And this is just the beginning

Friday, March 27, 2020

Difficult conversations and COVID19 - Vital Talk

talking beats not talking

Communication skills for clinicians dealing with serious illness

Atul Gawande on YouTube

Advance care planning and more

Physician Orders for Life Sustaining Treatment


Thursday, March 26, 2020

Advance Care Planning and COVID19

Hello, it's me again

Atul Gawande channels Susan Block on YouTube

Advance Care Planning Toolkit and Guides

Advance Care Planning

Advance Care Planning and More

National POLST Form

Wednesday, March 18, 2020

Thinking about end of life care in a whole new way #pallicovid

think about your goals for care

So things have changed dramatically right in front of us, and I'm looking at end of life care in a different way at the moment.

In practical terms right now that includes hospice team meetings via video, restrictions at nursing and assisted living facilities, screening calls to families before visits, colleagues self-quarantined, and doing projects from home.

It's changing all the time, too. Who knows what it will look like next week?

I've been with colleagues and others on Twitter and frankly thinking about how to care for lots of people who have severe symptoms in serious illness, specifically dyspnea (difficult breathing) and delirium (acute brain dysfunction), and also complicated grief for families and caregivers. 

My colleagues and I know how to do this. Our tools are simple. Our method is the essence of nursing - intelligent care.

Hospice in the US got going in the late 70's because community volunteers, activists, and health professionals developed a compassionate alternative to dying alone in the hospital. Money had nothing to do with it, just simple humanity.

We're going to depend on volunteer caregivers and will need community support in so many ways that no one yet has articulated.

Take a look up at the ICU Quick Sheet. The second step in treating patients infected with COVID19 is discussing goals of care (GOC) and triage.

Not everyone who needs a vent is going to want one (goals for care) or get one (triage).

Those are the patients and families we're thinking about. I'll stop here on that one.

Can't get where you're going without a destination, so...

Think About Your Goals for Care

This is the time to get real about advance care planning: 

1.Talk with someone you trust about what really matters to you, so they can make the decisions you would make about your treatment, if you don't have the capacity to make them yourself. 

Here's Atul Gawande to show us all in just 3 minutes how to have those kinds of conversations. He didn't have a clue either, until he asked his colleague Susan Block for help, and she told him exactly what to do. Smart guy, that Atul.



2. Designate someone you trust as your Health Care (Agent, Proxy, Power of Attorney) in writing using your state's form - though at this point what's to quibble? 

Massachusetts has a simple Health Care Proxy (HCP) form backed by law so if you don't know what else to use:

3. Talk with your trusted health provider about whether or not you want Aggressive Treatment ("Do everything!") for the Serious Illness Interstitial Pneumonia.

The ICU Quick Sheet up there is also a guide to Aggressive Treatment for the Serious Illness Interstitial Pneumonia (viral pneumonia), especially intubation (breathing tube) and mechanical ventilation (ventilator, breathing machine) to support damaged lungs and try restoring them to health. It's a hard road ahead. These health care workers know what to do. No hitter bats 1.000

The most serious complications along the way include hypoxia (oxygen too low for life), shock (falling blood pressure) sepsis (blood poisoning, blood infection) leading to damage and organ failure (brain, heart, kidneys, liver). There are machines to replace or support failed kidneys, liver, and heart. It's a hard road ahead. These health care workers know what to do. No hitter bats 1.000

If you have current health conditions, believe you are at heightened risk because of age, or otherwise need to have an open and honest conversation  - this is the time.  

The Massachusetts Medical Orders for Life Sustaining Treatment (MOLST) is a prescription signed by a physician - MD, physician assistant - PA, or nurse practitioner - NP. It is a medical order based on the patient's choices and decisions regarding Life Sustaining Treatment (Aggressive Treatment). It must be followed by health care professionals, treatment locations, and emergency responders. 


There are similar forms in use across the country:
Physician's Orders for Life Sustaining Treatment (POLST)

Thanks for reading. More later. Also too: