Viewpoints: Prostate Cancer Screening; Another Abortion Review; Successful Ebola Vaccine

A selection of opinions on health care from around the country.

Drugmaker Will Cut List Price To Hospitals For Anti-Parasitic Drug But Not For Consumers

Turing Pharmaceuticals says hospitals can earn a discount of up to 50 percent depending on how much of the drug they use. But the price will still be well above what the drug sold for before Turing bought the rights to the drug in August.

Early Effort By Rubio To Limit Federal Payments To Insurers Is At Heart Of Current Turmoil

Some of the co-op failures and the threat from UnitedHealthcare about a possible pull-out in 2017 are prompted by low levels of federal payments to help shield insurers from losses in the exchanges. Rubio helped lead an effort to stop those payments. Meanwhile, HHS Secretary Sylvia Burwell says she is trying to get more information about costs to consumers.

Viewpoints: Pfizer’s Merger Won’t Help Health; Zuckerberg Sets Standard With Paternity Leave

A selection of opinions on health care from around the country.

Small Coastal California Town Fights To Keep Hospital Afloat

Board meetings for the Mendocino Coast District Hospital are usually pretty dismal affairs. The facility in remote Fort Bragg, Calif., has been running at a deficit for a decade and barely survived a recent bankruptcy.

But finally, in September, the report from the finance committee wasn’t terrible. “This is probably the first good news that I’ve experienced since I’ve been here,” said Dr. Bill Rohr, an orthopedic surgeon at the hospital for 11 years. “This is the first black ink that I’ve seen.”

The committee erupted in applause, even a few cheers. But the joy was short-lived. By the next month, the hospital was back in the red.

Things first started going badly for the hospital in 2002, when the lumber mill in Fort Bragg closed down. Many people lost their jobs — and their health insurance, which had paid good rates to the hospital. Today, about 7,000 people are left in the blue-collar town, and the economy is propped up by tourists who come to the rugged Mendocino coastline to hike or fish.

By 2012, the hospital declared bankruptcy. Now it’s barely hanging on. And some locals are worried that the only hospital in the area might close for good.

If The Hospital Fails, So Goes The Community

“Nobody can live here without that hospital,” says Sue Gibson, 78, a Mendocino resident. “I mean, the nearest hospital is an hour and a half away on treacherous mountain roads.”

It’s not only her family’s health and the community’s that Gibson is concerned about. She’s afraid the local economy would be wrecked: The hospital is the largest employer.

“It has probably the best-paying jobs, and if they close that, all of that income would go away,” she says.

This story is part of a partnership that includes KQED, NPR and Kaiser Health News. It can be republished for free. (details)

That means less money spread around to the local bait shops and seafood restaurants. Also, Gibson says, the property values of businesses and homeowners would plummet.

Across the country, rural communities share similar fears. Small, rural hospitals everywhere have been struggling to survive. Many people who live in these areas are older or low income — not a great customer base for a hospital that needs to make money.

The government used to pay these small critical access hospitals extra to account for that. Medicare reimbursed them 101 percent of their reasonable costs. But after the recession, the government trimmed payments to 99 percent of costs. Medicaid pays much less.

At the Mendocino Coast Hospital, more than 80 percent of patients are covered by Medicare or Medicaid.

“The general health care reimbursement environment is to do more with less,” says Bob Edwards, the hospital’s CEO. “And I would even go so far as to say, it’s a starvation model.”

Plus, the government excludes a lot of expenses from its cost calculation, like doctors’ fees or janitorial services, says Wade Sturgeon, the hospital’s chief financial officer. Medicare basically tells the hospital what it will pay.

“So it’d be like going in to Safeway and saying, ‘Hey, there’s a jug of milk. I really want that jug of milk; I’ll give you $2,’ ” Sturgeon explains. “But the price says $3.50. ‘You’re only going to get $2.’ Often times, that’s what happens to us.”

So, many hospitals that never had to worry about controlling costs now do. They have to learn to compete in an open market, just like profit-driven businesses.

Some hospitals have planned ahead and adapted. Down the long, winding road from Fort Bragg, the Frank R. Howard Memorial Hospital in Willits just finished a $64 million renovation, complete with modern technology and a full organic garden that supplies the hospital cafeteria.

But some hospitals haven’t adapted. In the last five years, 57 rural hospitals in the United States have closed, according to data from the Rural Health Research Program at the University of North Carolina. Others have declared bankruptcy, like the Mendocino Coast District Hospital.

Battles Over How To Keep Hospital Afloat

The financial failure led to a lot of finger-pointing in this small town. Administrators blame the policy changes and payment reforms. Some doctors blame the administrators.

“It was economic mismanagement, to put a single label over all these things,” says Dr. Peter Glusker, a neurologist based in Fort Bragg for 37 years. “Because of people who just didn’t know any better.”

The public hospital is governed by a five-member board of directors, elected from and by the community. Glusker says some past directors knew nothing about finance or nothing about health care. Some just stopped caring.

So he and another doctor ran their own campaign, promising to shake things up on the board and change things. They were elected last year.

“There’s a segment of the population that says, ‘Oh good, it’s about bloody time,’ ” Glusker says. “But there’s another segment of the population, in the institution, that says, ‘Hey, you’re rocking the boat and this is bad.’ ”

Glusker’s running mate and ally on the board is Bill Rohr, the steely orthopedist, who wears his gray hair long, tied back in a tight ponytail. He spent many years in the corporate world and vowed to bring the kind of financial discipline he learned there to the tiny public hospital in Fort Bragg. A lot of people are afraid of him.

“Look, this is not about being ruthless,” Rohr says. “It’s about keeping this business alive, and it’s only alive if it makes money, OK.”

A lot of his sentences are punctuated like this, with a sometimes impatient “OK.”  When he’s giving a presentation at a finance committee meeting, he’s staring daggers at the CEO.

“We keep saying $870,000 loss,” Rohr says. “Not acceptable, OK.”

Edwards, the current CEO, has been on the job six months. He’s the hospital’s fourth chief executive in a year. His right-hand man is Sturgeon, the brand-new CFO, who started in September.

On days the financial committee meets, Sturgeon wears a mint-green shirt and a tie with a $100 bill on it. He says things like, “Do the math.”

Right now, the hospital administrators and the doctors on the board are pitted against each other in a battle over how to keep the hospital doors open — a battle that is echoed at small hospitals across the nation.

Cut Costs Or Raise Prices?

CFO Sturgeon and CEO Edwards say the hospital should focus on increasing revenues. It should find more patients to come to the hospital, maybe develop new services to attract then.

“If you’re not growing, you’re dying,” Sturgeon says.

He says the hospital should also charge more money for services provided to patients who have private insurance — currently about 15 percent of the hospital’s patients.

“Anytime we don’t raise prices, we’re leaving money on the table,” he says.

But Rohr says that would put an unfair burden on the small business owners in town, the ones who typically buy their own private insurance.

He and Glusker say the hospital should be focused on controlling costs.

“It’s obviously an expense problem,” Rohr says. “And you can come to that conclusion very quickly, just by looking at the data.”

The hospital is going to have to make some very difficult decisions to balance its budget, Rohr says. He offers this analogy: “There’s 20 people in the water about to drown. And there’s a rowboat there, but the rowboat can only hold 10,” he says. “If 11 people get in that rowboat, it sinks and all die, OK.”

At the hospital, this means choosing between a cardiologist and an ophthalmologist, a cafeteria and a new X-ray machine.

“It’s horrible to make the decision that 10 are going to drown,” he says. “But I’ve got to pick the 10. OK.”

One area Rohr thinks could be ripe for trimming? Administrative positions.

“I walk into the hospital to do rounds in the morning, and there are more people standing around with clipboards than with stethoscopes,” he says, “and that doesn’t feel like the right formula to me.”

But CFO Sturgeon says there’s not enough management. “Physicians always think there’s too much management,” he says. “You have some people with 50 direct reports. Does that make sense?”

There are some cuts both sides agree on. All say there needs to be some serious culling of the health benefits for hospital staff. Years ago, the nurses union negotiated to have the hospital pay full health benefits for any full-time or part-time nurse and their entire families. Nurses pay nothing toward their monthly premiums.

“Do the math. How many people are we paying for to have full family coverage?” Sturgeon says. “I’ve never worked in a hospital that provided the type of health insurance benefits that we have at this facility.”

Meanwhile, Need For New Hospital

To understand exactly how dire the financial situation is, one need only walk into the lobby of the hospital itself. It’s like stepping back into 1971. The main patient floor is lined with painted cinder-block corridors and drab brown carpets. The smell of Salisbury steak spills out of patient rooms.

“I’ve been in third-world countries. This is pretty basic, OK,” Rohr says, walking by the operating suite.

Through the maternity ward and the emergency room, Rohr says the flooring is layered with asbestos. The concrete isn’t strong enough to hold the weight of modern CT scanners and MRI machines. On top of all that, in 2030, new state requirements kick in for earthquake readiness.

It all points to one conclusion. “We’re going to have to build a new hospital,” Rohr says.

So, not only is the hospital struggling to maintain a balanced budget through normal hospital operations, it also has to come up with tens of millions of dollars to replace itself in 15 years.

It’s an especially tall order for a hospital that just posted its first monthly profit in a decade, then slipped into the red again right away.

If you ask the Washington policymakers in charge of payment reform, some will say it’s just a harsh reality that some hospitals will have to close. Some previous local administrators have predicted that the Fort Bragg hospital will one day be replaced by a helicopter landing pad. People will be airlifted out for heart attacks and other emergencies. For other planned surgeries, like hip replacements, people will have to drive “over the hill” to another hospital.

But the people who live in Fort Bragg and Mendocino don’t like that scenario. Sue Gibson has been hosting community meetings in her living room, where people spread out on the pink Victorian sofas to talk about how to save the hospital.

She’s rallying support for a possible solution, and it’s one the administrators and doctors are united around: a new tax on homeowners. Local residents will likely vote on that in November 2016.

“The only way we’re going to be able to save this place, really, is with a parcel tax,” she says. “But they can’t even think about that until they clean up their act.”

After the Wall Street meltdown, banks were too big to fail. The feeling here is that the local hospital is too important to fail. And the residents will be tapped to fund the bailout.

This story is part of a reporting partnership that includes KQED, NPR and Kaiser Health News.

Viewpoints: United HealthCare’s Warning; BlueShield’s Promise In Calif.; Drug-Pricing ‘Takeover’

A selection of opinions on health care from around the country.

State Highlights: Calif., Ore. Take Lead On Pharmacist-Prescribed Birth Control; Questions Linger About Montana Asbestos Contamination

A selection of health care stories from California, Oregon, Montana, the District of Columbia, Illinois, South Dakota, Massachusetts, Michigan, Georgia, North Carolina and Kansas.

As Medicare Drug Plans’ Premiums Rise, Beneficiaries Should Check Their Options

Meanwhile, the number of subsidized Medicare drug plans is dropping because of insurance market consolidation and federal rules discouraging duplicative options -- leaving some seniors with fewer options from which to choose.

More False Claims Act Cases Alleging Stark Law Violations Likely, Say Lawyers

In other marketplace news, a DaVita subsidiary -- RMS Lifeline -- is under Justice Department scrutiny regarding the medical necessity of certain procedures performed at two of its Florida centers.

Firm That Hiked Price Of Anti-Parasite Drug Is Considering A Discount For Hospitals

Turing Pharmaceuticals raised the drug price from $13.50 to $750 a tablet in August. It says the discounts for hospitals will be determined by how much of the drug they use. Also in industry news are several other articles examining drug-pricing questions and news about a forum sponsored by HHS dealing with concerns about rising costs.

HHS Draft Rule For 2017 Insurance Includes Standards For Networks Of Doctors, Hospitals

The proposal would mandate the number of doctors and other health care providers to provide better access. It would also meet some of the concerns of insurers and offer states an easier way to handle their insurance marketplaces.

Drugmakers Pfizer, Allergan Reportedly Agree To $150 Billion Merger

The deal for Pfizer to buy Allergan, which makes Botox, is one of the biggest takeovers in the health care sector.

Viewpoints: Concerns About Cures Act; Measuring Poverty; Make Dads Take Paternity Leave

A selection of opinions on health care from around the country.

Views On UnitedHealthcare: Surprise Announcement Likely Won’t Tank Marketplaces

Although the insurer's announcement that it might pull out of the health law's insurance exchange was a surprise, many commentators say such a move would have only small repercussions on the market. They point out, however, that it might be a catalyst for changes in the operations.

Research Roundup: Long-Term Care Financing; Hospitals’ EHRs; Doctors’ Views Of Health Law

Each week, KHN compiles a selection of recently released health policy studies and briefs.

State Highlights: Fla. Needle Exchange Program Gets State Senate’s OK; Avera Health Will Be S.D.’s Second-Largest Insurer With Purchase Of Dakotacare

A selection of health care stories from Florida, South Dakota, Illinois, Massachusetts, Michigan, Missouri, Washington, Pennsylvania, Nevada and Maine.

Consolidation Gives Florida Hospitals Leverage In Negotiations With Insurers: Analysis

In other regional hospital news, medical groups in New Jersey appeal the state's approval of an insurer alliance. And in Louisiana, a judge throws out a lawsuit filed by LSU seeking to remove the manager of two of its university hospitals.

Medicare Weighs Penalizing Doctors Who Routinely Order Prostate Screenings

The Wall Street Journal reports on a little-noticed proposal that is part of the federal effort to define quality in health care. Also, Reuters looks at a study showing a decline in U.S. funding for public health.

Those Specialty Drugs Likely Cost More Than Your Household Income

A new report says a year's worth of specialty drugs now outpaces the U.S. median household income. Elsewhere, using brand-name drugs over generic equivalents doesn't often boost patient satisfaction. And the price of hepatitis C drugs may be holding back the eradication of the disease and playing a role as Medicaid denies nearly half of requests for the treatments.

UnitedHealthcare, Lowering Financial Forecast, Warns Of Possible Exit From ACA Marketplace

Some view the insurer's Thursday announcement as an effort to compel the Obama administration to ease regulations and tweak certain aspects of the health law.

UnitedHealth Warns Of Marketplace Exit – Start Of A Trend Or Push For White House Action?

UnitedHealthGroup laid out a litany of reasons Thursday why it might stop selling individual health insurance through federal and state markets in 2017 — a move some see as an effort to compel the Obama administration to ease regulations and make good on promised payments.

Those problems, including low participation by healthy people, have led to financial losses, according to UnitedHealth. If not addressed, similar issues could affect other insurers, causing more to exit the market in the coming years, some Wall Street analysts and policy experts said.

Many said they anticipate the federal government will act to forestall widespread departures, particularly because continued withdrawals could be politically explosive during an election year.

Use Our Content

This KHN story can be republished for free (details).

A key piece of President Barack Obama’s signature health care law, the online marketplaces, also called exchanges, opened in 2014 for people who buy their own insurance because they don’t get it through their jobs. Enrollment, while growing, has fallen short of capturing the share of the eligible uninsured that was anticipated. This year, the marketplaces saw enrollment of more than 9 million customers, although the law’s expansion of Medicaid enrollment in many states has also played a large role in reducing the overall number of uninsured.

Only a month ago, United sounded more optimistic about business on the exchanges. But in its unexpected disclosure Thursday, the insurer said it would cut its earnings forecast and projected hundreds of millions in losses stemming from the policies it sells through the health law’s marketplaces.

The turnaround led some analysts to ask the insurer what had changed.

Stephen Hemsley, UnitedHealth chief executive officer, said too many healthy people dropped coverage and noted slower than expected enrollment. A major factor, he added, was far higher costs for those who signed up  for 2015 coverage under special exemptions after the general open enrollment period ended. Those exemptions included, for example, people who lost their insurance, moved or suffered a hardship, such as an eviction or had their utilities turned off. United said it did not see a similar increase in costs for people who bought policies from private brokers or websites instead of the government marketplaces after open enrollment, suggesting the reason was partly that the company’s eligibility assessments were more thorough.

The firm did not say it would halt sales in 2017 but warned that it would strongly consider doing so based on what happens in the next few months.

“We cannot sustain these losses,” he told Wall Street analysts. “We can’t subsidize a marketplace that doesn’t appear at the moment to be sustaining itself.”

Although it’s the nation’s largest insurer, United captured only a small percentage of consumers who currently have coverage through the Affordable Care Act marketplace, in part because it sat out the first year of enrollment and really ramped up only for this year’s coverage.

While seen as a serious challenge to the health care law, United’s decision alone doesn’t mark the death knell for the exchanges. In remarks to analysts and press reports on Thursday, Aetna and insurer Kaiser Permanente re-affirmed their commitment to selling through the marketplaces.

HHS Spokesman Ben Wakana defended the government marketplaces, noting that 9 of 10 of policyholders re-enrolling have a choice of three or more insurers for next year. “The reality is we continue to see more people signing up for health insurance and more issuers entering the Marketplaces, and at the end of January, we believe we’ll be looking at another successful open enrollment– just like the last two,” he said. “[Thursday’s] statement by one issuer is not indicative of the Marketplace’s strength and viability.”

But insurers, including Humana, Aetna and some of the large Blue Cross Blue Shield plans, were losing money or barely breaking even on their marketplace business, according to earnings reports.

“If there are no changes, all the large publicly traded companies will end up leaving,” said Ana Gupte, analyst with Leerink Partners. “But I would be very surprised if [the Department of Health and Human Services] doesn’t do something to accommodate their issues.”

Those options would be limited to what the agency could do without congressional action, many analysts said. Still, that could include relaxing some regulations or reconsidering some of the exemptions that allow people to sign up after the open enrollment period.

Former insurance executive and consultant Robert Laszewski said the administration needs to relax the rules to give insurers more flexibility to design plans that would attract healthier people. He said the costs – including deductibles and premiums – were too high for many people, particularly those with few medical needs.

“Disproportionately, the sick are signing up and the healthy are dropping out,” said Laszewski, adding that alternative plans with fewer benefits but lower costs should be made available.

Economist Len Nichols cautioned, however, that most of the law’s benefit requirements – taken individually – add little to the cost of a plan. Removing the bigger-ticket requirements, such as coverage for maternity care, would leave consumers without adequate coverage, said Nichols, who directs the George Mason University Center for Health Research and Ethics.

Nichols, Gupte and other analysts agree with the industry’s trade lobby, which says one thing the administration could do is make good on a promise to pay insurers under a temporary program designed to redistribute profits from some insurers that did especially well to offset losses others experienced in the marketplace plans. That program, however, has paid only about 13 cents on the dollar of what was promised, mainly because fewer insurers than expected made money.

Earlier this month, HHS Secretary Sylvia Burwell said the administration is exploring ways it might be able to help make those payments, although such a move comes too late to save many of the dozen insurance cooperatives that have announced they will pull out of the market in January. The less-than-anticipated payments are often cited as a main factor in the co-ops demise.

Longer Looks: Silicon Valley Suicides; Living With HIV; Texas Abortion Law

Each week, KHN's Shefali Luthra finds interesting reads from around the Web.

State Highlights: Calif. County Prepares To Offer Primary Care Services To Immigrants In U.S. Illegally; Calif. Officials Charge Blue Shield Of Backing Out Of $140-Million Pledge To Charity

News outlets report on health issues in California, Missouri, Illinois, North Carolina, Florida and Connecticut.

Viewpoints: A Tool To Help The Mentally Ill; VA Bonuses; Shifts On Medicaid Expansion

A selection of opinions on health care from around the country.

State Highlights: Fla. Advisory Panel Urges Lawmakers To Pass More Health Plan Consumer Protections; Survey Finds State Workers’ Comp Measure Cut Payments To Medical Providers

News outlets report on health issues in Florida, California, South Dakota, Connecticut, Massachusetts, Puerto Rico, Texas, Pennsylvania and Washington, D.C.

Virginia Hospitals’ Safety Rankings Now Available Online

Meanwhile, a Vermont health care provider is launching an ambitious payment overhaul that will emphasize wellness. In other hospital news, a Mississippi community hospital that is slated to close Dec. 1 owes $315,000 in back taxes and the Pennsylvania owner of four of the state's five most profitable mental-health hospitals is under investigation for Medicare and Medicaid practices.

Blood Cancer Drug Treatment Wins FDA Accelerated Approval

The drug treats multiple myeloma and is made by Johnson & Johnson. Also, new tools to fight antibiotic resistant "superbugs" emerge and the FDA readies more regulation on laboratory testing that sometimes produces incorrect results.

Health Care Leaders Overwhelmingly Support Government Action To Curb Drug Costs: Survey

According to Modern Healthcare's latest survey of executives, 90 percent of CEOs polled say that the fast rise of prescription drug prices was undermining their company's finances. In related news, The Philadelphia Inquirer reports on cancer treatment costs that can reach $30,000 a month.

GOP Looks For Way To Get Senate To Pass Obamacare Repeal

Republicans are considering making big changes to their proposal to repeal the health law and defund Planned Parenthood -- even perhaps scrapping the idea to deny the clinics money. Elsewhere, a court rules Congress must cooperate to find the source of a possible leak of government health-care policy in an insider-trading probe.

In Caring For Sickest Infants, Doctors Tap Parents For Tough Calls

PALO ALTO, Calif. — Dr. William Benitz walked past the rows of clear plastic isolettes in the neonatal intensive care unit at Lucile Packard Children’s Hospital at Stanford.

There’s little room to navigate — the space is jam-packed with the beeping machines, ventilators and nurses, who can care for as many 70 fragile infants. One tiny pink baby here today was born weighing 13 ounces.

“A can of coke is 12 oz. So imagine a baby who could almost curl up in a fetal position and fit inside a coke can,” explained Benitz, the hospital’s chief of neonatology.

For Benitz, who first came to Stanford 42 years ago as a medical student, the ability of doctors today to save babies this small feels like something of a miracle. But as far as medical technology has come, he says, some of the sickest and most premature babies who pass through his NICU won’t make it or will go on to suffer severe lifelong disabilities. Just 30 percent of the babies born at 24 weeks gestation, for example, survive without impairments.

One of the most difficult parts of Benitz’ job is determining how much treatment to give babies like these and when it is time to let them go. More and more, doctors like Benitz are looking to parents to help make these decisions, based on their own values and preferences.

William Benitz, chief of neonatology at Lucille Packard Children’s Hospital at Stanford, oversees a NICU with about 70 beds. (Photo by Heidi de Marco/KHN)

The American Academy of Pediatrics recently advised that parents should be given wide latitude to decide how aggressive doctors should be in cases where their child is at high risk of death or serious disability. In practice, this means parents willing to raise a child with severe disabilities might elect to pursue more aggressive care than those parents who do not want to take on the risk.

That’s a big change from the past. When Benitz first started here in 1973, doctors were considered the absolute authorities on life-and-death decisions. They consulted with colleagues, decided how much intensive care to give based on likely outcomes, and often didn’t even tell the parents until they’d acted.

This KHN story also ran on NPR. It can be republished for free (details).

“It never occurred to anyone that that might be a reasonable conversation to have,” he said. “We were in unexplored territory.”

As technology improved, and doctors tried to save sicker and even more premature babies, there were more decisions to make: Should they use a ventilator? Attempt a heart surgery? Those interventions helped many babies survive. Others did not fare as well.

“A lot of them ended up with significant impairments. In the mid-80s we began to hear from families that maybe that wasn’t consistent with their goals for their children,” he recalled.

The tiny pink foot of a premature baby at the neonatal intensive-care unit at Lucile Packard Children’s Hospital in Palo Alto, Calif., on Oct. 20, 2015. (Photo by Heidi de Marco/KHN)

Packard Children’s social worker Jane Zimmerman, who works with Benitz, said many doctors back then were trying to protect parents. “The rationale for it was they didn’t want parents to have to take on that lifelong responsibility at having felt they made a decision that resulted in their child’s death,” she said.

But some parents were angry that doctors had stopped intensive care without consulting them. Others were furious that they had not been given the option to end treatment of babies who ended up with severe cognitive and physical disabilities. Some filed lawsuits accusing doctors of causing their children “wrongful death” or “wrongful life.”

Related Stories

• A Sick Newborn, A Loving Family And A Litany Of Wrenching Choices
• American Academy Of Pediatrics Recommends Individualized Counseling For Parents Of Premature Infants

Such cases coincided with a larger movement in which patients fought for more say in their own medical care. By the mid-90s, parents in the NICU had become much more involved in decision-making for their babies.

The choices parents face are often wrenching. In May 2015, Chris and Karin Belluomini had a daughter Joy, who was born with Down Syndrome, multiple heart defects and fluid around her lungs. The doctors at Packard gave them the option of just providing comfort care, treatments that would soothe their daughter and relieve any suffering, but weren’t aimed at fixing her heart problems.

On one hand, the Belluominis, whose child was a patient of Benitz and Zimmerman, have a strong faith in God and were more than willing to raise a child with disabilities, even if severe.

The neonatal intensive-care unit at Lucile Packard Children’s Hospital in Palo Alto, Calif., on Oct. 20, 2015. (Photo by Heidi de Marco/KHN)

On the other hand, they didn’t want their daughter to suffer unnecessarily.

Their final decision was have doctors do everything they could for Joy – up to a point.

“We let them know if her heart stopped, we did not want her to be resuscitated. We just wanted her to be comfortable,” Karin Belluomini said in an interview at the family’s home in rural Gilroy, Calif.

Joy remained in intensive care for three difficult weeks. By the end, her blood oxygen levels were so low that the doctors said she could die at any time – possibly when her parents weren’t there. That’s when the Belluominis decided remove life support, so that Joy could die peacefully in their arms, disconnected from the tubes and needles.

Both parents said it was difficult to even imagine not being a part of such decisions.

“As a parent, you just want to do everything and anything to protect your child, so to be able to really understand her conditions and how it’s affecting her and to know that we did have a say in that was extremely important,” Karin Belluomini said.

“You kind of don’t want that responsibility and would rather have someone say or do it for you, but in the end, I wouldn’t want it to have been any other way,” added Chris.

Jenny Gold wrote this story while participating in the California Health Journalism Fellowship, a program of USC’s Annenberg School of Journalism.

Viewpoints: Tough Issues For FDA Nominee; A Mother’s Questions For Ben Carson

A selection of opinions on health care from around the country.

State Highlights: Health Access In Texas Examined For Women And Foster Kids; Mass. Proposal Would Limit Opioid Prescribing Power

News outlets report on health issues in Texas, Massachusetts, Wisconsin, Virginia, New Hampshire, New York and Florida.

Lower-Income Communities Hit Harder By Premature Colon Cancer Deaths

Almost 20 percent of colon cancer deaths in these communities could have been averted with early screening and the communities face $6.4 billion in lost wages, according to CDC estimates. Elsewhere, news outlets write about other public health stories including failures at psychiatric hospitals, the benefits of involving surgical residents in procedures and the growing obesity gap between women and men. "Cyber sickness" and the dangers of sugar are also in the headlines.

Top Public Health Care Concern: Drug Costs

Also, heart drug availability and costs are examined around the globe. And in other news, Pfizer considers moving its headquarters to Dublin to save on taxes, tech and drug companies team up on a trade secrets bill and an AstraZeneca lung cancer drug gets FDA approval.

Often Nonprofit Hospitals Fail To Let Consumers Know About Charity Care Options

Many hospitals are supposed to let patients know if they qualify for free or reduced-price care. Also in the news, a survey finds a growing numbers of physicians are moving to concierge care, employees are picking up a bigger share of their health care costs and the health law's impact on the municipal bond market is waning.

Medicaid Expansion Adds 7.8 Million Patients To Private Insurance Rolls Last Year

In other Medicaid news, a study finds that half of the immigrants living in California illegally could qualify under a plan to expand the state's low-income health program, the expansion door cracks open in Alabama and Ohio will update its medical education repayment formula for hospitals.

Administration, Lawmakers And Candidates Seeking Ways To Control Drug Prices

Consumers' concern about medications that can cost $100,000 a year or more is spurring politicians of all stripes and federal officials to search for remedies. Also in political news, calls by Sens. Marco Rubio and Ted Cruz, both seeking the Republican presidential nomination, for the Senate to move to the right of the House on a repeal measure is causing waves, and Dr. Ben Carson's health politics come under scrutiny.

A Sick Newborn, A Loving Family And A Litany Of Wrenching Choices

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.

Click to view slideshow.

Decisions about how much care to offer very sick family members are always challenging, but they can be particularly wrenching for parents like the Shamiyehs, who face harrowing choices at what’s supposed to be a wonderful time — the beginning of a life.

As doctors and families consider how far to push medical care, a chasm can open between the parents’ hopes and what providers consider realistic.

For the Shamiyehs, the first major decision was whether to “selectively reduce” –- the clinical term for aborting one fetus in a multiple pregnancy. “Omar and I were very uncomfortable with that. We really wanted to see what he was going to be like, and what life had to offer,” Anne said.

A photo of Kai Shamiyeh on the day he was taken outside for the first time. Anne says the family thinks of Kai as their sunshine. (Photo by Heidi de Marco/KHN)

That decision meant the twins, a boy and a girl, would likely be born premature.  As it turned out, they were delivered by C-section at 30 weeks — about two months early — at UCSF Benioff Children’s Hospital.

The boy was named Kai, the girl Malia. Each weighed about three pounds. They were rushed immediately to the NICU, where that night, Kai had his first surgery.

Malia went home after about five weeks. But Kai had a long road ahead. He was on a ventilator, had to be fed through a tube directly into his stomach and was still struggling to survive. Eventually, he was diagnosed with CHARGE syndrome – a rare genetic condition that can result in severe cognitive and physical disabilities.

This KHN story also ran on NPR. It can be republished for free (details).

About the time Malia went home, the doctors and nurses sat down with the Shamiyehs to discuss Kai’s treatment.  They needed to know whether the family wanted a tracheostomy, in which surgeons would insert a breathing tube directly into Kai’s neck to ease passage of air into his lungs.

“It seemed awful,” Anne said. “We were both really unhappy with that but we understood it wasn’t a choice, it was something we had to do.”

But Dr. Liz Rogers, a UCSF neonatologist who cared for Kai, saw it as a significant decision.

“To be very honest, for many, many of our families, the point of decision around a tracheostomy is a major, major time when families say this has gone on for too long and it’s not what I want for him.”

Anne had real hope for Kai’s future, despite the pessimism of some doctors.

“I kept thinking, maybe that doctor’s view of quality of life is different from mine. And maybe for me loving my child and having him feel love is enough,” said Anne. “And it’s ok if he can’t talk. Maybe he’ll wear a diaper until he’s 5, and maybe he’ll be in a wheelchair, but that’s ok. Because he’ll be alive and he’ll be my child.”

Omar Shamiyeh, 42, looks through Kai’s photo book on Oct, 22, 2015. (Photo by Heidi de Marco/KHN)

Studies suggest that providers do tend to have a different view of quality of life than parents.  In Kai’s case, many of his day-to-day caregivers – the nurses – felt Kai was suffering unnecessarily.

Diedre Miller says she was one of just a handful of nurses in the NICU willing to be part of his primary care team. It was clear to all of them, she said, that Kai wasn’t going to make it. Miller says she felt comfortable caring for Kai but faced pressure from other nurses.

“A lot of people thought OK, well let’s just offer the Shamiyehs the opportunity to withdraw care today. And as a primary nurse you knew that the Shamiyehs were never going to agree to that, and you knew that [Kai] had joy in his life,” she recalled. “But you go into the break room and everybody wants to talk about it, and everyone wants you to be the person to tell the Shamiyehs.”

There’s often a lag between when health care providers and parents sense a child isn’t going to make it. Researchers found, for instance, that oncologists realized children were going to die months before the parents.

Anne Shamiyeh prays with her husband, Omar Shamiyeh, and two daughters, Zara and Malia, before dinner on Oct.19, 2015. Anne says their faith played a strong role in dealing with the loss of Kai. (Photo by Heidi de Marco/KHN)

But “as easy as it is to say we knew Kai was going to die and we knew he was going to have a difficult life, gosh, what if we had been wrong?” Miller said.

From Anne’s and Omar’s perspective, Kai had many happy moments. They visited every day, always with Malia in tow. He smiled, cooed and connected with them. But he wasn’t getting better.

In May 2013, five months into Kai’s stay in the NICU, the Shamiyehs and their doctors sat down to talk about whether they wanted to go forward with the heart surgery that had been on the calendar since he had been born. It would have to be done if  Kai was ever to leave the hospital.

The surgery wouldn’t help, doctors explained, and he might die during the operation. This time, Anne and Omar decided not to go forward.

“So that was the day we found out we wouldn’t ever be bringing Kai home,” Anne said.

Anne Shamiyeh reads to her daughters Zara and Malia on Oct. 22, 2015. Anne says the girls talk about Kai all the time. (Photo by Heidi de Marco/KHN)

Two weeks later, Kai developed an infection that they couldn’t treat.  On June 5, 2013, he passed away in his mother’s arms.

There were real costs to Kai’s six-month stay in the NICU. Based on billing statements, the Shamiyehs calculate that the charges for Kai’s care added up to more than $11 million, though their insurer likely negotiated a lower rate.

There were also consequences for Kai’s twin sister Malia, whose parents were mostly focused on her brother during her first 6 months of life. She had speech and physical delays, although at age 3, she’s already caught up.

Kai Shamiyeh’s memorial card is posted on the refrigerator. “Kai is part of our everyday life,” said Anne Shamiyeh. (Photo by Heidi de Marco/KHN)

Looking back, Omar says he wonders if they went too far. “It’s really hard to think for 5 months he was going through all this pain and all this stress. You wonder if you made the right decision in keeping it going, you know?” he said.

But Anne, who is now studying to become a NICU nurse, says she does not regret giving their son the best possible chance at life.

She’s at peace with their decisions—both to try to save him and to let him go.

Jenny Gold  wrote this story while participating in the California Health Journalism Fellowship, a program of USC’s Annenberg School of Journalism.

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