Curious Bioethics: August 7-13, 2023
🏄🏽♂️ Surfer delivers insulin; botched use of facial recognition; med regulation failures
In today’s curated collection, you’ll find:
🗞️Bioethics News: Medical regulators can’t stop bad doctors; Surfer gets Insulin to Maui; police re-evaluate botched facial recognition case
📚Recommended Reading: The Ones We Sent Away
🦉Educational Opportunities: Pediatric Palliative Oncology Symposium
Hey there, Curious Human!
How are you this find Sunday??? I hope you’re getting some time to relax as the summer comes to a close.
I got a surprise visit this week from two Bioethics colleagues. Patrick Smith and Ryan Antiel are starting a new bioethics fellowship for clinicians at Duke. I’m stoked to see how their program grows.
Summer is a busy time for pediatric surgeries, so I’m looking forward to the hospital schedule going through its seasonal deceleration. Like many kids, mine go back to school this week. Like every year, I don’t know where the summer went.
🗞️ Bioethics in the News
Unstoppable: This Doctor Has Been Investigated at Every Level of Government. How Is He Still Practicing?
Medical boards are supposed to protect the public from unscrupulous physicians. However, the slow and plodding investigations
“But the ability of McGuckin to continue practicing, despite scrutiny from each of these regulators, highlights troubling gaps in the public safety net, ProPublica found. Those charged with identifying and stopping problem physicians are often slow-moving, blind to holes in their oversight and frequently unable — and at times unwilling — to stop doctors from practicing, even in cases of egregious harm or brazen fraud. Punishments are often nominal or easy to avoid, especially for well-resourced doctors like McGuckin.”
Surfer Kai Lenny Cut Through Bureaucracy to Get Critical Medications to Maui Residents
The Maui wildfires killed at least 89 people and ravaged the island. Around 1,000 people remain missing. The most seriously burned patients were transferred to Oahu for medical care. Emergency physicians in mobile clinics continue to serve others.
For people still on Maui, critical medications are running low. With insulin and other medication delivery flights thwarted by bureaucratic barriers, locals turned to using jet skis and boats.
“Something big is happening right now… We’re trying to get insulin flown in from Kona but our flights are being blocked by the Department of Health…a lot of people need their medical needs met…people are suffering… we have no support…”
Thankfully, the message effectively drew attention to the bureaucratic issues worsening the situation and now the flight has been cleared and boats and jet skis will not be stopped.
If you’d like a very surfer-dude version of this story, read this gnarly interview with Beach Grit’s Derek Reilly.
Detroit police changing facial-recognition policy after pregnant woman says she was wrongly charged
Facial recognition technology wrongly identified a pregnant woman as committing robbery and carjacking. Prosecutors ultimately dismissed the case. The technology examines images from gas station video to produce leads but was followed by “very poor” police work.
📚 Recommended Reading
The Ones We Sent Away
I thought my mother was an only child. I was wrong.
“It is extraordinary what we hide from ourselves—and even more extraordinary that we once hid her, my mother’s sister, and so many like her from everyone. Here are all these pictures of nonverbal children, so pulsingly alive—their parents describing their pleasures, their passions, their strengths and styles and tastes—while I know nothing, absolutely nothing, of my aunt’s life at all. She is a thinning shadow, an aging ghost.”
This moving essay reveals the story of a disabled child, now late in her life, sequestered from the bonds of family. In my early 20s, a friend’s mom found out she had a sibling who had been institutionalized. All the siblings were in their late 40s and early 50s, and tried to catch up with their long lost sister.
Parents of disabled children were often told institutionalization was not only preferable to raising their child, but that there were not other viable options. Not only were there no support systems to caring for disabled children, there were anti-support systems - actively making the idea of raising disabled children nearly impossible.
The piece touches on disability rights, bias against people with intellectual and physical disabilities, and the factors perpetuating their exclusion from society. I particularly appreciate the highlighting of the harm done to the rest of the family. Parents sent away their disabled children, having no idea that their lives may have been richer and fuller to have stayed together.
The Ones We Sent Away is long, beautiful, gutting, and worth the read.
🦉Educational Opportunities
Pediatric Palliative Oncology Symposium (PPOS)
Virtual Symposium
Thursday, September 14, 2023
(PDT); 8:00 am - 5:00 pm (CDT); (EDT)
Cost: Free
This symposium is designed for oncology, palliative care, and psychosocial professionals, but I spoke with one of the organizers and all are welcome.
Featured experts and a panel of bereaved parents will cover a host of challenging subjects, including:
Resilience in pediatric palliative oncology.
Update on the development and current status of the palliative care standards.
Ethical issues and a framework for ethical decision-making in pediatric palliative oncology.
Psychiatric and mental health needs for pediatric palliative oncology.
Pediatric palliative care in humanitarian crises.
Multimodal analgesia in pediatric palliative oncology.
Grief and bereavement in children.
Bereaved parent panel.
That’s it!
As always, thanks for being curious!
Hit reply and let me know what ethics issues you are most curious about this week—I’d love to hear from you!
See you next week!
Be Well & Be Curious,
Alyssa
