Category Archives: Ethics

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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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.

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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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These doctors want a choice in how they they die

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Hoping To Live, These Doctors Want A Choice In How They Die

Photo by Anna Gorman

Dr. Dan Swangard (Photo by Anna Gorman/KHN).

By Anna Gorman
KHN

SAN FRANCISCO — Dan Swangard knows what death looks like.

As a physician, he has seen patients die in hospitals, hooked to morphine drips and overcome with anxiety.

He has watched dying drag on for weeks or months as terrified relatives stand by helplessly.

Recently, however, his thoughts about how seriously ill people die have become personal. Swangard was diagnosed in 2013 with a rare form of metastatic cancer.

To remove the cancer, surgeons took out parts of his pancreas and liver, as well as his entire spleen and gallbladder.

The operation was successful but Swangard, 48, knows there’s a strong chance the disease will return. And if he gets to a point where there’s nothing more medicine can do, he wants to be able to control when and how his life ends.

“It’s very real for me,” said Swangard, who lives in Bolinas, Calif. “This could be my own issue a year from now.”

That’s one of the reasons Swangard joined a California lawsuit last month seeking to let doctors prescribe lethal medications to certain patients who want to hasten death. If he were given only months to live, Swangard said, he can’t say for certain whether he would take them.

“But I want to be able to make that choice,” he said. Continue reading

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States reluctant to regulate fertility services

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IVF egg thumbBy Michael Ollove
KHN

The Utah legislature took a step last week into territory where state lawmakers rarely tread.

It passed a law giving children conceived via sperm donation access to the medical histories of their biological fathers. The law itself stirred no controversy. The oddity was that the legislature ventured into the area of “assisted reproduction” at all.

Assisted reproductive technology (ART) helps infertile couples to conceive. Compared to many other industrialized nations, neither the U.S. nor state governments do much to oversee the multibillion-dollar industry.

“The United States is the Wild West of the fertility industry.”

“The United States is the Wild West of the fertility industry,” Marcy Darnovsky, executive director of the Center for Genetics and Society said, echoing a description used by many critics of the regulatory environment surrounding ART. Continue reading

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Transforming care through the end of life – Town Hall event, March 19th

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Ira Byock HeadshotWe prepare for life’s most important events – education, weddings, birthdays and vacations – but serious illnesses and death are rarely discussed. Now is the time to have the conversation.

Ira Byock, M.D., author of Dying Well and The Best Care Possible, will describe what it means to “die well” and highlight how we can change the way we plan for and experience the end of life.

Dr. Byock is a leading palliative care physician and public advocate for improving care through the end of life. He serves as executive director and chief medical officer of the Providence Institute for Human Caring of Providence Health & Services.

He is also Professor of Medicine and Community & Family Medicine at the Geisel School of Medicine at Dartmouth.   Continue reading

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Inviting patients to help decide their own treatment

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By Anna Gorman
KHN

SAN FRANCISCO — Rose Gutierrez has a big decision to make.

Gutierrez, who was diagnosed with breast cancer last spring, had surgery and 10 weeks of chemotherapy. But the cancer is still there.

Now Dr. Jasmine Wong, a surgeon at UC San Francisco, is explaining the choices – Gutierrez can either have another lumpectomy followed by radiation, or she can get a total mastectomy.

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Rose Gutierrez (Photo by Heidi de Marco/KHN).

 

“I think both options are reasonable,” Wong said. “It’s just a matter of how you feel personally about preserving your breast, how you feel about having radiation therapy.”

“I’m kind of scared about that,” said Gutierrez, 52, sitting on an exam table with her daughter on a chair beside her.

“Well if you made it through chemo, radiation is going to be a lot easier,” Wong told Gutierrez, who is from Merced, Calif.

In many hospitals and clinics around the country, oncologists and surgeons simply tell cancer patients what treatments they should have, or at least give them strong recommendations.

But here, under a formal process called “shared decision making,” doctors and patients are working together to make choices about care. Continue reading

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More states consider ‘Death with Dignity’ laws

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Death-with-dignity advocate Brittany Maynard and husband Dan Diaz at their wedding. Maynard’s death by lethal injection in November drew attention to the aid-in-dying issue now being considered in several states. (PRNewsFoto/Compassion & Choices)

By Michael Ollove
Stateline

After he decided to hasten his death, Erwin Byrnes, who had advanced Parkinson’s disease, set about planning all the details of the memorial service that would follow.

He designated the nearby DoubleTree Hotel in Missoula, Montana, as the venue. He asked his old friend Gene to serve as master of ceremonies. He selected the entire menu—shrimp (because no one doesn’t like shrimp), sandwiches, beer and the hotel’s oatmeal cookies with chocolate and walnuts that he relished. He selected music that would soothe his mourners, including the Frank Sinatra tune “September Song” and Louis Armstrong’s classic “It’s a Wonderful World.”

It came off just as the former high school principal had wished—just as his death had five days earlier on St. Patrick’s Day last year. Byrnes, later described by his wife as “a good Irishman,” had selected that day as most suitable for his departure from this world. On that morning, with his family surrounding him, he squeezed a valve on a tube leading to his body, sending a fatal barbiturate his physician had legally prescribed coursing into his bloodstream.

“It was a beautiful way to be able to end his life,” said Erwin’s wife of nearly 64 years. “In peace and in control and with dignity.”

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It happened only because of a Montana Supreme Court decision in 2009 that has put the state in company with four others that allow assisted suicide or, as proponents prefer, “death with dignity” or “medical aid-in-dying.” The states permit physicians to prescribe lethal medications for terminally ill patients, who then self-administer the medications. Continue reading

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When a patient’s death is broadcast without permission

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Photo by Brainloc

Photo by Brainloc

By Charles Ornstein ProPublica
This story was co-published with the New York Times.

Anita Chanko could not sleep. At 4 a.m., on an August night in 2012, she settled onto the couch in her Yorkville living room with her dog, Daisy, and her parrot, Elliott, and flipped on the DVR.

On came the prior night’s episode of ” NY Med,” the popular real-life medical series set at NewYork-Presbyterian Hospital, starring Dr. Mehmet Oz. Mrs. Chanko, 75, was a fan of the show and others like it.

” . . .  even with the blurred picture, you could tell it was him. You could hear his speech pattern. I hear my husband say, ‘Does my wife know I’m here?’.”

“It starts off, there’s a woman with stomach cancer and her family, and then there’s somebody with a problem with their baby, I think it was a heart,” she remembered. “And then I see the doctor that treated my husband.”

Mark Chanko, her husband, had died 16 months earlier, in April 2011, after being struck by a sanitation truck while crossing a street near his home. The doctors and nurses at NewYork-Presbyterian Hospital/Weill Cornell Medical Center tried in vain to save his life.

On the TV screen, she saw the chief surgery resident Sebastian Schubl, responding to an emergency in which a man is hit by a vehicle.

“And then I see, even with the blurred picture, you could tell it was him,” she said. “You could hear his speech pattern. I hear my husband say, ‘Does my wife know I’m here?’.”

There was no doubt in her mind: The blurred-out man moaning in pain was her husband of almost 46 years, the Korean War veteran she met in a support group for parents without partners.

“I hear them saying his blood pressure is falling. I hear them getting out the paddles and then I hear them saying, ‘OK, are you ready to pronounce him?’.”

She clenched her fists so tightly that “the palms of my hands almost looked like stigmata” and her mouth got so dry that her tongue stuck to the roof “as if I had just eaten a whole jar of peanut butter.”

“I saw my husband die before my eyes.”

Continue reading

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Dying and profits: The evolution of hospice – The Washington Post

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Twenty-dollar bill in a pill bottleThe influx of for-profit companies into the hospice field has benefited patients, advocates say, because the commercial companies made big investments in technology, focused on efficiency and made care more accessible.

But a Washington Post analysis of hundreds of thousands of U.S. hospice records indicates that, as those companies transformed a movement once dominated by community and religious organizations into a $17 billion industry, patient care suffered along the way.

On several key measures, for-profit hospices as a group fall short of those run by nonprofit organizations.

via Dying and profits: The evolution of hospice – The Washington Post.

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Doctors In Massachusetts Now Required To Offer End-Of-Life Counseling | CommonHealth

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Map of BostonThe state will review whether hospitals are following the rule and compliance could become an issue in a facility’s licensing review. But the state is not focused on enforcement right now.

via Doctors In Massachusetts Now Required To Offer End-Of-Life Counseling | CommonHealth.

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Nursing home cameras create controversy

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Intellinet Network Solutions

Intellinet Network Solutions

By Jenni Bergal
Stateline

Over the years, Illinois Attorney General Lisa Madigan has consistently heard “horror stories” about the abuse or neglect of nursing home residents. Now she is trying to bring such cruelty out of the shadows and into clear view.

Madigan’s office is drafting legislation, likely to be introduced in 2015, which would allow Illinois nursing home residents and their families to place cameras in their rooms to help protect them.

“Residents and family members should have the option, for their own peace of mind, to monitor what is taking place,” said Madigan. “If something goes wrong, you can see what actually happened.”

If the measure is approved, Illinois would join at least four other states—New Mexico, Oklahoma, Texas and Washington—that have laws or regulations allowing residents to maintain cameras in their rooms.

If the measure is approved, Illinois would join at least four other states—New Mexico, Oklahoma, Texas and Washington—that have laws or regulations allowing residents to maintain cameras in their rooms. In Maryland, cameras can be placed in a resident’s room, but only if the facility permits them, according to state guidelines.  Continue reading

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Too many of us die in hospital instead of home. Here’s why.

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Paula and Ron Faber walk their dog Millie in 2009, between cancer diagnoses. (Photo by Shelley Seccombe)

This story is part of a partnership that includes WNYCNPR and Kaiser Health News. 

It was September 2012 and it was life-long smoker Paula Faber’s third cancer in a decade, but she did not hesitate.

“She was going to fight it every inch of the way,” says her husband Ron Faber.

“I would have rather have had a really okay four-and-a half months than this endless set of treatments.”

By August 2013 after much fighting, Paula Faber died at age 72. Ron Faber now regrets the intervening 11 months of chemotherapy, radiation, painkillers and side effects that reduced his wife to 67 pounds of frayed nerves.

Instead, the pain could have been managed so she could focus on the quality of life.

“I would have rather have had a really okay four-and-a half months than this endless set of treatments,” the stage actor said.

As they confronted Paula’s terminal diagnosis, the decision the Fabers made is among the most difficult anyone can make.

But it turns out that in the New York metropolitan region, patients opt for aggressive treatment much more often than other Americans. Continue reading

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Dying in America is harder than it has to be, expert panel says

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It is time for conversations about death to become a part of life.

That is one of the themes of a 500-page report, titled “Dying In America,” releasedWednesday by the Institute of Medicine.

The report suggests that the first end-of-life conversation could coincide with a cherished American milestone: getting a driver’s license at 16, the first time a person weighs what it means to be an organ donor.

Follow-up conversations with a counselor, nurse or social worker should come at other points early in life, such as turning 18 or getting married.

The idea, according to the IOM, is to “help normalize the advance care planning process by starting it early, to identify a health care agent, and to obtain guidance in the event of a rare catastrophic event.”

The IOM plans to spend the next year holding meetings around the country to spark conversations about the report’s findings and recommendations. “The time is now for our nation to develop a modernized end-of-life care system,” said Dr. Victor Dzau, president of the IOM. Continue reading

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Business, insurer take on end-of-life Issues by phone

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Kate Schleicher. (Photo by Emma Lee/WHYY)

Produced by a partnership that includes WHYY’s NewsworksNPR and Kaiser Health News. 

Imagine you’re at home. Maybe that’s in Florida, Wisconsin, Rhode Island, wherever.

You have cancer. You just had another round of chemo, and the phone rings.

“My name is Kate. I’m a health care counselor,” the gentle voice says from her cubicle in Cherry Hill, N.J..

This is no telemarketing call …  it’s about the end of your life.

Kate Schleicher, 27,  is a licensed clinical social worker, who knows almost as little about you as you do about her.

Except she knows your phone number, your insurance provider and that you are pretty sick. Continue reading

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