Doctors were once unquestioned authorities on how aggressively to treat the sickest and most premature babies. Then parents started pushing back for more say. The responsibility can be excruciating.
By Jenny Gold
SAN FRANCISCO — Anne and Omar Shamiyeh first learned something was wrong with one of their twins during their 18-week ultrasound.
The technician was like, well there’s no visualization of his stomach,” said Anne. “And I was like, how does our baby have no stomach?”
It turned out that the baby’s esophagus was not connected to his stomach. He also had a heart defect. At the very least, he was likely to face surgeries and a long stay in intensive care. He might have lifelong disabilities.
This was only the start of an eight-month ordeal for the Shamiyeh family. Continue reading
By Michael Ollove
PORTLAND – Oregon—Matt cried at the birth of his son a couple of weeks ago. His husband, Sylvain, was outwardly more composed, but no less transfixed as his newborn blinked his eyes at a bright, unfamiliar world.
The woman who gave birth to the child was the calmest of the lot. She alone had been through this before—twice, in fact. Besides, this wasn’t even her baby.
A paid surrogate, she had had two fertilized eggs (from an egg donor) implanted in her uterus. She had carried the baby for nine months, lost its twin during the pregnancy, endured false contractions, and finally gritted her teeth through three hours of labor. And although she took a turn holding the baby and pumped breast milk for him, all her responsibilities toward him ended at birth, while Matt and Sylvain, French nationals recently transplanted to New York City, dove into the deep end of parenting. Continue reading
By Guy Gugliotta
It wasn’t what President George W. Bush had in mind. In 2001, Bush restricted the use of federal funding for embryonic stem cell research, giving conservatives what looked like a major victory in the nation’s culture wars.
Three years later California thumbed its nose at the ban by starting its own multi-billion dollar stem cell program, and several states followed suit. Even though the restrictions were lifted in 2009, the insurgent movement survived and grew. Today at least seven states offer stem cell research funding or other incentives to local scientists and industry.
These initiatives have not yet produced the eagerly anticipated “cures” for conditions such as melanoma or Parkinson’s disease. But early public disappointment has yielded to the realization that years of research lie ahead before treatments can routinely enter the marketplace.
Still, as an engine for generating economic development and jobs, and as a mechanism for enhancing local scientific prestige, stem cell research for many states appears to be worth the investment. Continue reading
By Charles Ornstein ProPublica, Oct. 8, 2015, 11 a.m.
This story was co-published with NPR’s Shots blog.
A bill proposed Wednesday by two U.S. senators would require drugmakers and medical device manufacturers to publicly disclose their payments to nurse practitioners and physician assistants for promotional talks, consulting, meals and other interactions.
The legislation would close a loophole in the Physician Payment Sunshine Act, which requires companies to report such payments to doctors, dentists, chiropractors, optometrists and podiatrists.
By APRIL DEMBOSKY
A controversial bill to legalize physician-assisted suicide in California is headed to the governor for consideration, after almost nine months of intense — often personal — debate in the legislature.
If Gov. Jerry Brown signs the bill, California would become the fifth state to allow doctors to prescribe lethal medication to terminally ill patients who request it, after Oregon, Washington, Vermont and Montana.
The videos from Seattle Children’s Treuman Katz Center for Pediatric Bioethics 2015 Conference, The Delicate Triangle: Responsibilities and Challenges in the Provider-Patient-Parent Relationship, are now available on the Seattle Children’s website,
Here’s the opening talk, entitled “Must We Always Tell Children the Truth?”, by John Lantos, MD,, director of the Children’s Mercy Hospital Bioethics Center in Kansas City.
By Jenny Gold
For the tiniest infants — those born before 25 weeks in the womb — survival is never guaranteed, and those who make it may be left with severe disabilities.
These micro-preemies are born in what’s known as the “grey zone.” Whether or not to resuscitate them depends on the decisions made by individual hospitals, doctors and parents. Decisions can vary greatly even among hospitals in the same area.
A new statement from the American Academy of Pediatrics aims to improve the way those decisions are made. The statement suggests that doctors individualize counseling for parents based on the particular baby’s chances of survival and the family’s goals for their child. Continue reading
By 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.
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
By Shefali Luthra
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
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