chronic illness « Berman Institute Bioethics Bulletin

Features

News roundups

Announcements

How Netflix’s ‘Afflicted’ Failed the Chronic Illness Community

September 13, 2018

According to participants in the docuseries, producers promised compassion but delivered exploitation instead

Quick Read

How Netflix’s ‘Afflicted’ Failed the Chronic Illness Community

Thursday, September 13th, 2018

When “Afflicted” viewers first meet Bekah Fly, she and her boyfriend Jesse are living in a secluded van in the middle of the California desert. Her severe mold sensitivity makes it difficult for her to reside in traditional homes or apartments, she explains. She only leaves the desert for doctor’s appointments and otherwise avoids indoor spaces to keep her symptoms, such as asthma, at bay.

In the premiere episode, Fly tells the cameras that the prospect of indefinitely living with her mold sensitivity, on top of chronic Lyme disease, sometimes makes her wish to end her life. In the fourth episode of “Afflicted,” cameras pan to Fly’s brother Nick Dinnerstein, who discusses her history of depression and anxiety. Fly’s parents also make a brief appearance in the series, recalling her experience in a psychiatric ward as a teenager.

Together, the edited scenes forefront Fly’s mental health, pairing her family’s soundbites with those of medical experts who speculate that she and her fellow “Afflicted” subjects’ illnesses are the result of psychiatric problems.

…continue reading ‘How Netflix’s ‘Afflicted’ Failed the Chronic Illness Community’

Image: By CMetalCoreThis W3C-unspecified vector image was created with Inkscape. – Own work, Public Domain, https://commons.wikimedia.org/w/index.php?curid=53251565

Be the first to like.

Unlike

Huffington Post

Moral distress is a game changer

August 29, 2018

Critical care nurses’ inner turmoil over others’ treatment decision can lead to higher turnover. Featuring comments from our Cynda Rushton

Quick Read

Moral distress is a game changer

Wednesday, August 29th, 2018

…

“There has been a shift in many ICUs to having more patients who are chronically and critically ill,” said Cynda Rushton, PhD, RN, FAAN, the Anne and George L. Bunting Professor of Clinical Ethics in the Johns Hopkins Berman Institute of Bioethics and the School of Nursing.

These patients may survive an initial episode of critical illness, but they remain dependent on intensive care treatment and may not recover. A study published in the American Journal of Respiratory and Critical Care Medicine estimates there are more than 100,000 such patients in the U.S. at any point in time. Rushton has seen nurses struggle when asked to continue using methods such as ECMO (extracorporeal membrane oxygenation) when patients are not improving and there is pressure to keep going. Nurses also express concern about whether patients and families understand the implications of agreeing to use certain therapies, such as a ventricular assistive device, Rushton said. “People don’t always understand how it will affect them functionally, socially and financially in the long run.” …

…continue reading ‘Moral distress is a game changer’

Be the first to like.

Unlike

Nurse.com

The Robot That Staves Off Loneliness for Chronically Ill Children

August 14, 2017

A Norwegian startup company has created an automaton that helps children with long-term sickness be part of normal life again

Quick Read

The Robot That Staves Off Loneliness for Chronically Ill Children

Monday, August 14th, 2017

As a rule of thumb, the best ideas are the simplest. That’s easy to forget in an age of rapid technological innovation, when the tendency is to be led by capability rather than need.

For as Karen Dolva, co-founder of the Norwegian startup No Isolation, says: “There are a lot of engineers who don’t want to make something useful – they want to make something cool.”

Dolva, a 26-year-old who studied computer science and interaction design at Oslo University, is not one of them. She and her two co-founders – Marius Aabel and Matias Doyle – are all about utility. As their company name suggests, they are looking to end human isolation. It’s a massive undertaking, but they’ve started with a distinct and overlooked group: sick children.

Be the first to like.

Unlike

The Guardian

Medical Providers Try Uber, Lyft For Patients With Few Transportation Options

August 17, 2016

For people without access to private transportation, getting to medical appointments can be a challenge, especially if they have chronic conditions that require frequent appointments

Quick Read

Medical Providers Try Uber, Lyft For Patients With Few Transportation Options

Wednesday, August 17th, 2016

Edith Stowe, 83, waited patiently on a recent afternoon at the bus stop outside MedStar Washington Hospital Center in the District of Columbia. It’s become routine for her, but that doesn’t make it any easier.

Stowe, who lives about five miles from the hospital, comes into the medical center twice every three months to get checkups for chronic kidney failure. She doesn’t own a car and relies on buses. During rush hour, buses are more frequent, and she can keep the commute to about 30 minutes. But when she has to come in the middle of the day, it takes her at least an hour to get in and another hour to get home.

“It’s pretty good except for waiting during non-rush hours,” she said. “When that happens I don’t plan anything else for the day.”

Image: By Praiselightmedia – Own work, CC BY-SA 4.0, https://commons.wikimedia.org/w/index.php?curid=38084668

Be the first to like.

Unlike

KHN

When the Patient Won’t Ever Get Better

April 28, 2016

“Tell me,” my patient’s daughter asked at the other end of the phone line. “Is she stable?” I wasn’t sure how to answer.

Quick Read

When the Patient Won’t Ever Get Better

Thursday, April 28th, 2016

I wasn’t sure how to answer.

My patient hadn’t been home in nearly three months. It had all started to come apart in the fall. Until then, she’d been a healthy 90-year-old who lived alone and cooked all her own meals, played tennis in the summer, binged on movies in the winter. But then there was a strange pain in her back, a visit to an urgent clinic and a harrowing ambulance ride to the emergency room. A tear had developed in the wall of her aorta, one of the main vessels carrying blood from the heart. In a windowless conference room, the doctors told my patient’s family that without emergency surgery, she would most likely die.

To her family’s relief, the surgery went well. But there were complications – first pneumonia, then kidney failure, delirium, profound weakness. After two weeks she hadn’t died, but she hadn’t recovered, either. Because she was still dependent on the ventilator, her doctors took her back down to the operating room for another procedure, a tracheotomy, cutting a small hole in her neck to serve as a more permanent connection for the ventilator. Because patients with tracheotomies can’t eat using their mouths, at least not at first, she returned from the O.R. with another new tube, a feeding tube in her stomach.

Image: By Rcp.basheer – Own work, CC BY-SA 3.0, https://commons.wikimedia.org/w/index.php?curid=16721005

Be the first to like.

Unlike

NY Times Well Blog

Living With Invisible Illness

July 17, 2015

For patients with chronic diseases masked by a healthy-looking exterior, diagnoses can be elusive, or unhelpful

Quick Read

Living With Invisible Illness

Friday, July 17th, 2015

Jackie Todd is 27 years old, with sly eyes, a laugh that seems to come from deep in her belly, and thick, dirty-blond hair that she dyes a fiery copper hue. She also has a small computer inside of her chest. It’s constantly collecting information; it’s a diary of dates, times, and events. In a sense, Jackie’s whole life is archived in a code that she can’t interpret. She jokes that she’s part cyborg, but it’s not entirely a gag: a $50,000 machine is keeping her alive. “This device will do everything it can to prevent my heart from stopping,” she says.

The first time Jackie’s implanted defibrillator shocked her heart back into a regular rhythm, she had been sprinting across her high-school campus. It was late fall, about 45 degrees—the air chills early in Chicago. “It felt like daggers poking into my lungs,” she told me. Her sisters had warned her that she needed to hurry up to make a screening of the second Harry Potter film. Jackie was 14. She’d had an implanted device for two years.

“When it fired, it was as if someone had shoved metal doors violently into my back,” she says. “It knocked the wind out of me.” Her heart rate had skyrocketed to 275 beats per minute, and the initial shock didn’t jar it back to normal. That took another jolt. Her vision went white, her knees buckled, and she collapsed at the top of a stairwell, unconscious.

Be the first to like.

Unlike

The Atlantic

Op-Ed: Hope and Stem Cell Interventions

July 20, 2011

Can the concept of hope be considered a good in and of itself?

How Netflix’s ‘Afflicted’ Failed the Chronic Illness Community

How Netflix’s ‘Afflicted’ Failed the Chronic Illness Community

Moral distress is a game changer

Moral distress is a game changer

The Robot That Staves Off Loneliness for Chronically Ill Children

The Robot That Staves Off Loneliness for Chronically Ill Children

Medical Providers Try Uber, Lyft For Patients With Few Transportation Options

Medical Providers Try Uber, Lyft For Patients With Few Transportation Options

When the Patient Won’t Ever Get Better

When the Patient Won’t Ever Get Better

Living With Invisible Illness

Living With Invisible Illness

Op-Ed: Hope and Stem Cell Interventions

Follow Us

Twitter Feed

Twitter Feed