Sunday, February 16, 2020

Docs

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? 

Discuss.

Addendum

“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.