Stan and XuXia Smith learned from an ultrasound midway through the pregnancy that their son would be born with an often-fatal congenital heart defect. In the first week of the baby’s life, they got more bad news: Some major organs were incorrectly formed and mislocated inside Travis’s tiny body. They faced a long journey.
“I felt like I’d been hit by a tidal wave. I couldn’t process the information I was being given fast enough, and I knew we’d need someone to help us translate and evaluate the enormous amount of information we were being bombarded with,” Stan Smith said.
The Chicago couple hired Dan Polk, a patient advocate and retired neonatologist whose specialty is working with sick babies and their families.
Polk helped the Smiths understand the complexity of their son’s condition while building an experienced health care delivery team, and he has guided them through the intricacies of Travis’s treatment. More than two years after his birth, he still has medical issues that require Polk’s counsel.
“I was trained to take care of patients but found myself spending too much time away from the bedside,” said Polk, who took up patient advocacy in 2013 after 35 years in practice. “Being an advocate for babies and parents has allowed me to do what I was trained to do: take care of patients.”
There are perhaps 250 to 300 patient advocates for hire in the United States, one professional association estimates. Some advocates such as Polk have clinical backgrounds and know how to navigate the health care system. They may accompany patients to appointments and facilitate doctor-patient conversations in patient-friendly language. They may also handle tasks such as prepping for medical appointments, finding the right doctors and even deciphering medical bills and health insurance plans.
Advocates aren’t cheap — their rates can start at $100 an hour or more, depending on experience and credentials — and insurance doesn’t cover them. Continue reading →
The people most likely to refuse to have their children vaccinated tend to be white, well-educated and affluent, researchers report.
A study published in the January issue of the American Journal of Public Health used California state government data on “personal belief exemptions,” or opting out of vaccinations for nonmedical reasons.
Researchers found the exemption percentages were generally higher in regions with higher income, higher levels of education, and predominantly white populations.
In private schools, 5.43 percent of children were exempt, compared with 2.88 percent in public schools.
LOS ANGELES — More times than she can count, Dr. Carin van Zyl has heard terminally ill patients beg to die. They tell her they can’t handle the pain, that the nausea is unbearable and the anxiety overwhelming.
If she were in the same situation, she too would want life-ending medication, even though she doubts she would ever take it. “I would want an escape hatch,” she said.
Earlier this month, California law became the fifth — and largest — state to allow physicians to prescribe lethal medications to certain patients who ask for it.
Yet van Zyl can’t see herself as one of those doctors.
“This is my life’s work, to relieve suffering,” said van Zyl, head of palliative care medicine at Los Angeles County-USC Medical Center. To her, that does not mean cutting short a life.
“I can’t imagine pulling the trigger,” she said.
Weeks after California Gov. Jerry Brown signed the “end-of-life option act” into law, palliative care physicians like van Zyl are trying to come to terms with what it means for them and their terminally ill patients. Continue reading →
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 →
The Supreme Court has agreed to hear a challenge to a Texas law that requires abortion providers to have admitting privileges at a nearby hospital and requires abortion clinics to have the facilities of an outpatient surgical center.
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 →
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.
The public overwhelmingly supports Medicare’s plan to pay for end-of-life discussions between doctors and patients, despite GOP objections that such chats would lead to rationed care for the elderly and ill, a poll released Wednesday finds. Continue reading →
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.
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.