Category Archives: Ethics

Abortion foes dive in clinic dumpsters for discarded records

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Dumpster-nonBy Charles Ornstein ProPublica
This story was co-published with NPR’s Shots blog.

The scene in front of abortion clinics is often tense, with clinic workers escorting patients past activists waving signs and taking photographs.

But increasingly, another drama is unfolding out back. There, abortion opponents dig through the trash in search of patient information.

Using garbage as their ammunition, anti-abortion activists who have sometimes been accused of violating abortion seekers’ privacy are turning the tables. They claim it’s the clinics that are violating patients’ privacy by discarding medical records in unsecured ways.

“Everybody acts like the abortion clinics are this bastion of protection for women’s privacy, and they’re like the chief offenders of just dumping this stuff willy-nilly,” said Cheryl Sullenger, senior policy advisor at Operation Rescue, an anti-abortion group based in Wichita, Kansas. “It’s so hypocritical.”

Abortion rights groups counter that while a small number of clinics have improperly disposed of records, the vast majority take strict precautions to protect patient privacy. It’s far more common, they say, for abortion opponents to trespass on private property or try to break into locked dumpsters.

PHOTONiteowlneils at the English language Wikipedia under Creative Commons license Continue reading

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Racial gap in attitudes toward hospice care

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By Sarah Varney

BUFFALO — Twice already Narseary and Vernal Harris have watched a son die. The first time — Paul, at age 26 — was agonizing and frenzied, his body tethered to a machine meant to keep him alive as his incurable sickle cell disease progressed.

When the same illness ravaged Solomon, at age 33, the Harrises reluctantly turned to hospice in the hope that his last days might somehow be less harrowing than his brother’s.

Their expectations were low. “They take your money,” Mrs. Harris said, describing what she had heard of hospice. “Your loved ones don’t see you anymore. You just go there and die.” Continue reading

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Why your doctor won’t friend you on Facebook

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like-thumb-facebookBy Shefali Luthra
KHN

Doctors’ practices are increasingly trying to reach their patients online. But don’t expect your doctor to “friend” you on Facebook – at least, not just yet.

Physicians generally draw a line: Public professional pages – focused on medicine, similar to those other businesses offer – are catching on. Some might email with patients.

But doctors aren’t ready to share vacation photos and other more intimate details with patients, or even to advise them on medication or treatment options via private chats.

They’re hesitant to blur the lines between personal lives and professional work and nervous about the privacy issues that could arise in discussing specific medical concerns on most Internet platforms.

Some of that may eventually change. One group, the American College of Obstetricians and Gynecologists, broke new ground this year in its latest social media guidelines. It declined to advise members against becoming Facebook friends, instead leaving it to physicians to decide.

“If the physician or health care provider trusts the relationships enough … we didn’t feel like it was appropriate to really try to outlaw that,” said Nathaniel DeNicola, an ob-gyn and clinical associate at the University of Pennsylvania, who helped write the ACOG guidelines. Continue reading

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Medicare says doctors should get paid to discuss end-of-life issues

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By Kristian Foden-Vencil, Oregon Public Broadcasting and Stephanie O’Neill, Southern California Public Radio

Remember the so-called death panels?

When Congress debated the Affordable Care Act in 2009, the legislation originally included a provision that would have allowed Medicare to reimburse doctors when they meet with patients to talk about end-of-life care.

But then Sarah Palin argued that such payments would lead to care being withheld from the elderly and disabled. Her comment ignited a firestorm among conservatives and helped fuel the opposition to the legislation. Continue reading

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NYC hospitals to end filming patients without consent

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Photo by Brainloc

By Annie Waldman
ProPublica

Bruised by criticism after a reality TV show surreptitiously recorded and aired a man’s death, New York City hospitals will no longer allow patients to be filmed without getting prior consent.

The Greater New York Hospital Association, an umbrella organization that represents all of New York City’s hospitals, has asked its member institutions to put an end to filming patients for entertainment purposes without getting their permission.

The move came in response to an issue raised by a ProPublica story published with The New York Times earlier this year.

“Our member hospitals strongly agree that patients deserve privacy in the course of receiving care and that their medical information should be kept confidential in accordance with the law,” said Kenneth E. Raske, the president of Greater New York Hospital Association, in a letter to City Council members last month. The letter was released this week.

ProPublica’s report, published in January, revealed how ABC’s reality show “NY Med” filmed the death of Mark Chanko, a patient at NewYork-Presbyterian/Weill Cornell Medical Center, without getting permission from him or his family. In July, New York City Council members demanded that city hospitals prohibit the filming of patients.

“Not everything is made for TV,” said New York councilmember Dan Garodnick in an interview. “When you go into a hospital, you deserve to know that your sensitive moments are not going to end up on primetime.”

Chanko’s family only found out about the filming after the episode featuring his death aired. The family was not even aware that camera crews had been in the emergency room during Chanko’s final moments.

[Photo by Brainloc]

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Death with Dignity participation rises slightly in Washington

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More than half of participants receiving lethal dose of medication are women

From Washington State Department of Health

It’s been six years since Washington’s Death with Dignity Act went into effect and since that time, 725 adults with a terminal illness have chosen to end their lives with a physician-prescribed lethal dose of medication.

Death with Dignity participation rose less than 2 percent in 2014.

There were 176 terminally ill patients in 2014 who received a prescription to help them end their lives. The prescriptions were written by 109 different physicians and were filled by 57 different pharmacists. Of the 176 people who received these prescriptions, 170 are known to have died.

Death with Dignity participation rose less than 2 percent in 2014 compared to the previous year, although more than half of those who died last year were women — up from 48 percent in 2013.

Screen Shot 2015-08-06 at 1.49.33 PM

Those who died after receiving the lethal medications were between the ages of 21 to 101. As in previous years, many patients choosing to receive the medication listed the loss of independence as the reason for participating.

Of the 170 participants in 2014 who died: Continue reading

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Are you pregnant?

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Pregnancy: A Touchy Subject In Employee Wellness Assessments

“Are you pregnant?”

PregnancyBy Julie Appleby
KHN

It’s a topic employers generally avoid, since the Pregnancy Discrimination Act of 1978 prohibited sex discrimination on the basis of pregnancy.

But women’s advocates fear these long-standing protections could be undermined by some workplace wellness programs.

That question and “How old were you when you first became pregnant?” are both included in a health risk assessment offered to some clients of Audax Health, a wellness firm.

“How old were you when you first became pregnant?”

Similar queries are posed in health risk assessments offered by other wellness programs, say consumer groups, including the National Women’s Law Center.

“These are questions they should not ask,” because of the potential for discrimination, said Emily Martin, vice president and senior counsel for the NWLC,  in a letter to the Obama administration asking for a ban on such questions in wellness programs. Continue reading

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Fetal tissue attack is latest tactic in long GOP fight against Planned Parenthood

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Logo_plannedparenthoodBy Julie Rovner
KHN

Republican calls to defund Planned Parenthood over its alleged handling of fetal tissue for research are louder than ever. But they are just the latest in a decades-long drive to halt federal support for the group.

This round of attacks aims squarely at the collection of fetal tissue, an issue that had been mostly settled — with broad bipartisan support —  in the early 1990s. Among those who voted to allow federal funding for fetal tissue research was now-Senate Majority Leader Mitch McConnell, R-Ky.

McConnell made no mention of his previous position when he announced that the Senate would take up a bill to cut off Planned Parenthood’s access to federal funds before leaving for its summer break. The first vote on the bill is expected as soon as Monday. Continue reading

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‘A terrible way to end someone’s life’

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By Stephanie O’Neill, Southern California Public Radio

Nora Zamichow says if she and her husband, Mark Saylor, had known how doctors die, they may have made different treatment decisions for him at the end of his life (Maya Sugarman/KPCC).

“I felt like I was beating up people up at the end of their life,” she says.

It looks nothing like what people see on TV. In real life, ribs often break and few survive the ordeal.

A Stanford University study shows almost 90 percent of doctors would forgo resuscitation and aggressive treatment if facing a terminal illness.

“I felt like I was beating up people up at the end of their life,” she says.

It looks nothing like what people see on TV. In real life, ribs often break and few survive the ordeal.

Gorlitsky now teaches medicine at the University of Southern California and says these early clinical experiences have stayed with her.

“I would be doing the CPR with tears coming down sometimes, and saying, ‘I’m sorry, I’m sorry, goodbye.’ Because I knew it very likely was not going to be successful. It just seemed a terrible way to end someone’s life.”

Gorlitsky wants something different for herself and for her loved ones. And most other doctors do too: A Stanford University study shows almost 90 percent of doctors would forgo resuscitation and aggressive treatment if facing a terminal illness. Continue reading

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Religious freedom, states’ interest clash over autopsies

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Minnesota_population_map_croppedBy Jake Grovum
Stateline

When Tadd Johnson got a call in February that a Native American tribal elder in northern Minnesota had died and authorities were preparing to do an autopsy over his family’s objections, the message was simple.

“They’re going to do an autopsy on Mushkooub, and you need to stop it,” said Johnson, an attorney and chairman of the American Indian studies department at the University of Minnesota’s Duluth campus, a reference to deceased elder Mushkooub Aubid.

It had been years since Johnson, who also is a Native American, had practiced law. But he soon found himself poring over the state’s medical examiner guidelines and religious freedom statutes.

He got in touch with Aubid’s family members, who were trailing the medical examiner’s car on its way to Duluth. That’s where the autopsy would be performed within a few hours unless they could stop it. Continue reading

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Doctor’s office research – What is it? What’s it to you?

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SEATTLE COMMUNITY CONVERSATION SERIES JUNE 9, SEATTLE.

“DOCTOR’S OFFICE RESEARCH. WHAT’S IT TO YOU?”

Facilitated by Benjamin Wilfond MD, Seattle Children’s Research Institute

speech-bubbleJoin us for an engaging and intimate discussion about research that happens in your doctor’s office.

What? You thought research only happened at universities or hospitals, right?

It turns out that plenty of decisions, like which hand gel to use or which blood pressure medicine to prescribe, vary by a lot without much rhyme or reason.

Doctors want better evidence for these decisions.  But how much should patients know and be able to agree to?

Learn more at rompethics.iths.org

Each Conversation in the series explores a topic in biomedical science and its role in society, connecting people to the biomedical research community

Details  and REGISTRATION

WHEN?

Tuesday June 9
5:45 – 7:30 PM

WHERE?

Kakao Chocolate + Coffee
415 Westlake Ave. N.
Seattle, WA 98109

HOW MUCH?

$5 NWABR members| $10 General admission, Includes discussion, appetizers, espresso and first glass of beer or wine if 21+

Everyone is welcome.  No science background necessary.

SUGGESTED READINGS AND RESOURCES

Description of research in your doctor’s office

Influence of doctors’ demographic on their medical practice

Making evidence-based medicine doable in everyday practice

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Facing death but fighting the aid-in-dying movement

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end-of-life-kpcc-2-770

Stephanie Packer (Photo by Stephanie O’Neill / KPCC)

By Stephanie O’Neill
Southern California Public Radio

Stephanie Packer was 29 when she found out she has a terminal lung disease.

It’s the same age as Brittany Maynard, who last year was diagnosed with terminal brain cancer. Maynard, of northern California, opted to end her life via physician-assisted suicide in Oregon last fall.

Maynard’s quest for control over the end of her life continues to galvanize the “aid-in-dying” movement nationwide, with legislation pending in California and a dozen other states.

But unlike Maynard, Packer says physician-assisted suicide will never be an option for her.

“Wanting the pain to stop, wanting the humiliating side effects to go away – that’s absolutely natural,” Packer says. “I absolutely have been there, and I still get there some days. But I don’t get to that point of wanting to end it all, because I have been given the tools to understand that today is a horrible day, but tomorrow doesn’t have to be.”

A recent spring afternoon in Packer’s kitchen is a good day, as she prepares lunch with her four children.

end-of-life-kpcc-770

The Packer family gathers in the kitchen to cook dinner. From left: Jacob, 8; Brian Sr. ; Brian Jr., 11; Savannah, 5; Scarlett, 10; and Stephanie. (Photo by Stephanie O’Neill / KPCC)

“Do you want to help?” she asks the eager crowd of siblings gathered tightly around her at the stovetop.

“Yeah!” yells 5-year-old Savannah.

“I do!” says Jacob, 8.

Managing four kids as each vies for the chance to help make chicken salad sandwiches can be trying. But for Packer, these are the moments she cherishes. Continue reading

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Global pandemic of fake medicines poses urgent risk, say experts

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pills-spill-out-of-bottleFrom the National Institutes of Health

Poor quality medicines are a real and urgent threat that could undermine decades of successful efforts to combat HIV/AIDS, malaria and tuberculosis, according to the editors of a collection of journal articles published today.

Scientists report up to 41 percent of specimens failed to meet quality standards in global studies of about 17,000 drug samples.

Among the collection is an article describing the discovery of falsified and substandard malaria drugs that caused an estimated 122,350 deaths in African children in 2013. Other studies identified poor quality antibiotics, which may harm health and increase antimicrobial resistance.

However, new methodologies are being developed to detect problem drugs at the point of purchase and show some promise, scientists say. Continue reading

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