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Death on the ICU

As a Buddhist chaplain on a Medical ICU when I saw the suffering patients and families endured, I knew we had to be better.

Photo of Phyllis Coletta
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When I worked briefly as a Buddhist chaplain in a Medical ICU I was shocked by the suffering I watched every day as families anguished over what to do next.  There are no words to adequately describe an ICU death.  It is most often preceded by medical interventions that are barbaric – machines, wires, drugs, and pumps sustain a body until bereft family members can find a way to stop the aggressive medical treatment and let nature take its course, often feeling like they are committing a crime rather than releasing someone from prison.  The ICU is no place for siblings or children to have conversations about what a parent or loved one would have wanted at this point. It’s like trying to teach a drowning man to swim.  The die is cast.

What if families talked about end of life care over dinner? What if priests and rabbis and pastors fostered values-based “upstream” conversations not just about how we want to live but how we want to die, knowing they are intimately connected?  What if it was not taboo to talk about the kind of treatment you want – or don’t want – before you die?  How can we help families, neighbors, faith communities and clinicians to stop being fearful, maybe stop wasting time watching television or shopping and turn attention to the most important event that we will all inevitably face?

The pain I saw on the MICU was not just physical but the most excruciating emotional suffering I have ever witnessed.  And yet, that rare family that truly knew and understood the patient could firmly direct clinicians toward the end of life their loved one envisioned.  Most people (about 80%) want to die at home, yet 70% die in institutions.  Where is the disconnect? Why does this happen?  Not surprisingly, nearly 88% of physicians say they would not want the aggressive end-of-life care their patients endure.  How can we bring our culture back from the brink of often brutal over-treatment to the death most people want – a mostly pain-free natural ending at home with loved ones?

With the force of weapons of war, physicians and medical machinery can easily overwhelm patients and families. But we can reclaim the power we have given over to the sainted notion of longevity. We can, in fact, be encouraged and taught to talk to each other about what we want our dying to look like.  The Conversation Project, for instance, is a grassroots vehicle for helping communities have these difficult, yet oddly sometimes joyful, conversations about life and death. Neighborhoods band together to keep their streets safe; they can be powerful change agents on the block. What if we had devoted champions embedded in neighborhoods and churches? We can help to gently guide people and their loved ones to “take back the night.”

I remember one amazing black family that sang their mother into her life’s exit.  It is possible to “take back the night” and, in fact, find our way to go gently into it. Fifty percent of us will be unable to make decisions about end-of-life treatment.  So now, while we can, we just need to open our hearts and start talking to those who will.  I want to spare my three boys the anguish inflicted on families by fear and aggression.  I’d like them to sing me out of this life, untethered to machines or specialists, their loving arms catching me as I fall.

What is a provocation or insight that might inspire others during this challenge?

"Death is not extinguishing the light. It is putting out the lamp because the dawn has come."
Rabindranath Tagore

If you participated in an End of Life Storytelling Event, tell us which Chapter or city you came from:

Boulder CO (where I hope to engage some college students in starting an OpenIDEO chapter)

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Photo of Katy Butler

PS. I think the problem starts with doctor-patient-family communication about the landscape ahead five years "upstream."  Words like "advanced," "progressive," and even chronic are confusing -- how about incurable, worsening and worsening? Then there's my favorite --"multiple system organ failure." How about "Dying?"  Eric Widera MD of Geri-Pal has done beautiful work with ePrognosis, a site where anyone, patient or doctor, can plug in some figures and get an estimate of remaining lifespan. I hope someone funds it and widens it so that we also get decent predictions of the "house of cards" stage of living and dying, where ANY hospital stay sets of a downward spiral to a hospital death.
Nothing can be exact, but doctors who have seen many people die of lung cancer or heart failure or anything else know a lot more about the landscape ahead than the rest of us do. We need to ask: what is the natural course of my illness? 

Photo of Katy Butler

Every hospital is a hospice. Humanize and make sacred the spaces where families gather for the vigil, especially outside ICU.  Bulletin boards for photographs, prayers, letters, blessings. Niches for flowers. Candles. A shared journal where any family can post. Sneak in pets. Eliminate visiting hours. Make sure the ICU docs and nurses give people a chance to say their last words and final blessings before the tubes go in. Once they're in, there's no talking and few people recognize that.  Reclaim the space any way we can. Reduce the "moral distress" suffered by families, doctors and nurses who feel they're involved in "torturing patients" -- that's the word they use --in ICU.  People often end up there by sliding down a slow, incremental slippery slope -- train doctors in better "patient selection" before they suggest a "Hail Mary" surgery for an old and fragile patient for whom it becomes a conveyor belt to the ICU.

Photo of Phyllis Coletta

Amen, Katy.  And of course if families are deeply communicating and understand process and patient wishes they are less likely to rush to the Emergency Room (where the next step often is the ICU).  Talk to each other.  And be brave. We need to remember that death is as natural as birth.  Dying is not  always a medical emergency

Photo of Katy Butler

Amen! Dying is not an emergency. Big love, Katy 

Photo of Dave Gould

I am a palliative care social worker lucky enough to work on a well resourced palliative care ward and the relief that patients and families feel when they see calm and a beautiful courtyard garden complete with Zen garden and then feel
the empathic care of the team is amazing. Buddhism informs my practice supporting patients to seek to be at peace in the moment they are in, and to draw on what nourishes them. Out physicians have been interested in Buddhist approaches to dying and non medical ways of supporting patient journeys.

Photo of Phyllis Coletta

Hi Dave, thanks for writing.  I think yours is a model that would benefit this project overall.  The Zen Buddhist approach to dying (and living) focuses on cultivating peace.  What could be better in the dying process?  I'm grateful for what you do and hope we get to collaborate further on this OpenIDEO concept.  
Best, Phyllis

Photo of Avi Bhar

Beautiful. You captured so much that is wrong in the ICU, yet provided us a ray of light forward. Thank you for sharing. 

Photo of Phyllis Coletta

Thank you Avinesh.  While the ICU certainly can save lives, it too often becomes Death's Waiting Room.  When did prolonging breath at any cost become our standard of medical care?  Thanks for your comment

Photo of Morgan Meinel

Phyllis, thank you so much for your very insightful and valuable share. Thank you for the work you do - I am certain that your supportive presence has benefited countless patients and their families.
 
Your share really emphasizes the great importance of advanced care planning and having honest, open communication early on (ideally when healthy) with our loved ones about what we may want the trajectory of our illness and inevitable death to look like. So many patients arrive to our Palliative Care Unit at Mount Sinai after weeks-months on the ICU. Most (if not all) express having wished they reached out to a palliative or supportive care team earlier on to help mediate those conversations. Early intervention with supportive care can be so helpful, adding an extra layer of support for the patient and family, regardless of whether or not they decide to pursue aggressive treatment. It makes such a difference. 

Thank you so much for your share! It is so valuable. Please continue doing the extraordinary work you do. It makes all the difference in the world. 

Photo of Phyllis Coletta

Thanks for what you do, Morgan.  I'm not sure we appreciate how hard people work in healthcare, and how exhausting it can be.  I'm hoping we find a way to bring palliative care to many more sick people.

Photo of Khin Tye

I experienced what you described about ICU when I was with my sister-in-law when her body stopped breathing. This was so different from my experience in meditation with my father's passing. (I wrote about this in another inspiration story ''Tibetan Book of Living and Dying') https://challenges.openideo.com/challenge/end-of-life/research/peace-and-time-for-closure
Still, I appreciate what the medical team were trying to do in ICU to give a living change for my sister-in-law.  If there is a chance to connect again at the Ideas or Implementation phase perhaps we can team up on ideas.  I'd like to collaborate with someone else interested in this sacred moment of passing and living.

Photo of Phyllis Coletta

Thanks for reaching out, Khin.  I'd love to connect and collaborate.  I think there are a lot of people interested in the sacred moment of passing.
Best,
P

Photo of James Park

One way to avoid dying in the Intensive Care Unit is to join the One-Month-Less Club: http://www.tc.umn.edu/~parkx032/CY-1MLC.html.