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:

Friday, February 28, 2020

Questions to ask when you're looking at a hospice

so many questions

I'm wrapping up some stuff about some stuff, so please stay tuned. You know what I mean, that thing we talked about? Not that one, the other one. Yeah, that thing.

Friday, February 21, 2020

How to find a good hospice

time to change the game

Bonus quote: “Folks [who] are consistently doing the job the way that it needs to be done, honestly should be subject to less scrutiny,” Banach told Hospice News.

That [who] is doing some heavy lifting, IMO

More to come, I promise (including how to use HospiceCompare)

More about finding and choosing a good hospice:

Sunday, February 16, 2020


His eulogy was carefully written and well-delivered. Her death was a serious matter, worthy of his best efforts and intent, suited to the deep grief and disorienting loss everyone felt.

And so sudden, her trajectory like a sled speeding down an icy mountain trail then gone.

The richness of her life filled the place, an evident glow not from one source but everywhere, variously dimmed or brightened by the music, scripture, and tributes of her many closest friends.

Yes, many.

His eulogy stood as the formal account of her life before sickness, and definitive chronology of all she endured after. It was a tale of battles, courage, and doctors. It ended in death.

 At the UMass Amherst College of Nursing

“Palliative” Documentary Movie Showing & Discussion with filmmakers and the physician featured in the film.

The event is being co-sponsored by the Northeast Death Care Collaborative and the College of Nursing Seedworks Clinical Assistant Professor of Social Justice in Nursing and partly supported by a Center for Teaching and Learning Flex Grant. It is a community engaged event!

It is taking place March 13th from 4-6 pm in Skinner Room 012. The movie is a documentary short. After the showing we will have a question and answer with the producer - Dr. Brady, Director - John Beder, and Dr. Tremonti (the physician that is the main "medical" character in this film).”

Because who better to teach nursing students than doctors?

From the trailer

“A documentary short exploring the conversations during end-of-life care with pediatric Palliative care specialist Dr. Nadia Tremonti. Palliative also highlights the caretakers and families working with Dr. Tremonti. Filmed in Detroit at the Children's Hospital of Michigan over several years 'Palliative' aims to introduce this vital area of care struggling to overcome the stigmas of death and dying.”

Can a medical director ‘de-medicalize’ death? Does palliation conflate with death? Are doctors heroes looming large over death, in the face it, or both? 



“This is a place for collaboration among end of life navigators, slow medicine practitioners, hospice & palliative care staff, end-of-life doulas & death midwives, family caretakers, funeral consumer advocates, home funeral guides, funeral celebrants, funeral directors, natural burial activists, burial ground managers, clergy, & others engaged regionally in this death-positive cultural shift.”

Northeast Death Care Collaborative 

Another ending*

“Aunt Cora” encouraged Burney-Scott to whisper her love in her mother’s ear, to hold her hand, play music, and to be present in “an organic practice.” One day, when her mother struggled to breathe, Cora assured Burney-Scott that she didn’t need to fetch doctors—that nothing was wrong. “She’s leaving,” Cora told her, a simple statement that’s also a tenet of end-of-life care: Death can’t be controlled, but you can prepare for some aspects of it.”

How Death Doulas Ease the Final Transition
Yes! Magazine

* With thanks to Dr. Monica McLemore

Sunday, February 2, 2020

Sneak peek magnum opus - how to find the best hospice

I've been working on something that started as an article and has turned into a mission, namely an objective and helpful way to answer the question - "How can I find the best hospice? Where do I even start?"

I wrote two posts in 2017 and 2018 that took on these questions, and I tried to show my thinking about how to sort through the various options to find which ones were most worth exploring. There are plenty of rabbit holes to fall into when trying to find a hospice, but no useful road map.

I also wrote about the lame and disingenuous attempt by the corporate hospice industry trade group to guide patients and families through this serious and difficult decision as part of my #HospiceMonth series. I say 'lame and disingenuous' because the corporate hospice industry trade group wants it both ways - appear to be helpful to patients and families, but don't actually provide them with the framework and information that supports informed decisions and highlights the flaws of the corporate hospice industry's operating model:
  1. People are dying
  2. ????
  3. Profit!!

So, here we are. 

My hope is to present the methods, tools, information, and attitude that anyone can apply to the task of finding the best hospice - the people and organization who can help a patient and family make their way through an often dark and unfamiliar time.

Thanks for reading. See you next time. 

Monday, January 6, 2020

Serious illness and end of life - what it's all about

I don't know if "patient experience" is still a buzzword, or if anyone actually finds it helpful to use the roller coaster metaphor to describe serious illness. I think this image conveys a few helpful points about the experience, but it doesn't show the caregiver.

More about the Cresta Run at Sven-Holger funky clothing website.

Very cool YouTube video of a ride from the top.