With COVID our ICUs fell backwards in time. Consolidation of power within the medical team. Lack of visitation. It’s suppression of healing and it’s wrong.
Op-Ed Link: wapo.st/3ftwzBa #medtwitter#pulmcc#meded@WesElyMD
2/ How do we bring patients and families (safely) into the very foreign world of the ICU with humility, integrity and purpose? How do we share the space? #patientexp#MedTwitter
3/ Episteme – a principled system of knowledge; scientific knowledge. How can we truly share what we know without family presence? How do we learn what they know?
4/ Excluding families impairs their “knowing,” and is a form of epistemic exclusion. The best communication cannot compete with bedside presence. And without them we can’t know. We are handicapping each other.
5/ It is our responsibility to ensure that they are treated equally as a knower, to create spaces that promote epistemic justice. This MUST matter to us as healers.
6/ The pandemic forced us into crisis mode, but that doesn’t justify us staying there. Understanding the WHOLE patient in the context of their life story is critical for healing.
7/ As Mrs. Reyes told us, “We need people in our lives who love us and know us and COVID was the opposite.”
Mr. Reyes told us, not having his wife, “crushed my ability to heal. If she wasn't there, I could not have hope.”
8/ Families cannot be regarded as visitors. They are essential members of our care teams. Not all healing comes at the hand of the medical team. Holistic healing can come only from partnership with patient and families.
9/9 It is time that we recognize it as form of injustice to exclude families, in any context. Who's with me?
It seems that part of what made this past 18 months so difficult is that so few people had capacity to absorb more trauma (direct or vicarious). We were all living in the center ring of the Ring Theory in some way. 1/
There were times when I felt that I was receiving everyone's worst moment/hardest death/biggest trauma and was running out of room/capacity. Maybe you did too? Learning how to create space to hold it all helped.
AND that's probably a lifetime's worth of work. 2/
Creating space (for me) meant placing EXTRA value on my role in attending to the suffering. Sometimes by just reminding myself This-Is-Healing-Too.
AND noticing my own reactions - being emotionally accessible to MYSELF and others AT THE SAME TIME.
My memories of my first month of internship in NYC are so vivid. The HIV ward, the Tagalog of night nurses, the endless paracentesis kits, the downward gaze of cryptococcal meningitis, the bat-wings of PCP Xrays in children. As well as things I couldn't see as clearly then. 1/
The HIV ward was a Staff ward. That meant uninsured and cared for by resident teams. The ID Attending would chart round in a backroom, tell stories, but wouldn't see the patients. It was a segregated and structurally racist practice. We, and the patients, were on our own. 2/
There was one man, skeletal and dying of disseminated MAC colitis who told me every day he just wanted to see his daughter before he died. He was estranged from his daughter. He never saw her, and I'm not sure we really even tried. We prioritized treatment and not much else. 3/
Maybe because I speak with vulnerability about everything from fetal loss to my own medical trauma to the huge psychological toll of this past year, I am often asked how I choose what to share. The cost of sharing so to speak. A thread 1/
My first and most essential rule for myself is that my wholeness cannot be contingent on how someone else may respond. If I am at risk of fracturing or my healing can be disrupted based on someone’s response then I am not ready to share. 2/
Some may choose to weaponize vulnerability against those who share ~ that is inevitable. It’s the price of play. But more often what happens is that vulnerability begets kindness, others feel safe sharing and we all draw in a little closer to our shared humanity. 3/
So many of us in medicine are deeply familiar with the normalization of abhorrent behavior in service of some perceived institutional gain (reputation, skill, productivity). There is a reason this feels so familiar to #MedTwitter
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And we are deeply familiar with the resistance we face when we elevate our voices and name it as a problem we are told by the enablers that “he didn’t mean it literally” we are “blowing it out of proportion.” The press faced this as well.
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Then one day it inevitably blows up in everyone’s face and they can no longer deny the problem. The support they offer in the moment of the predicable end is meaningless. The time for indignation and action is long past.
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Sometimes it feels like everyone is hurting. To feel of use, I spent part of my day being a book fairy. Delivered @withlovecleo Heart Talk and Journal to a friend who is doing hard work of boundary setting and self-construction. 1/
Delivered @maggiesmithpoet latest Keep Moving to a friend moving through grief after a tragic death, with a note reminding her that I love her. 2/
Delivered @marykarrlit The Art of Memoir to a patient and activist who wants to tell her story, is desperate to help others and is finding her voice. 3/
Some deceptively simple life advice I keep returning to these days. From patients, dead friends, wise family. A thread.
1. A problem you can solve with your own money, isn’t a problem. It’s an inconvenience. (A reminder that so much true suffering around us is so BIG).
2. Don’t pickle things. (A reminder not to preserve the good wine/china plates or expressions of love for a special occasion. Preserving things changes their character).
3. If the path is clearly laid out before you, it is not your path. (There will be obstacles that reroute you and it will seem impossible at times. That’s because you are paving a new way).