Real Life Decisions and Sustainability!!!

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First and foremost, our prayers go out to those who lost love ones in Paris this past weekend. We must realize the change this signifies in the battle against terrorists. It transcends politics and must consider one thing only….the safety of the people of this country and the civil world.

Reflecting back to our previous post regarding coverage for wellness I found it interesting reviewing this case regarding a high mortality, low survival situation article. This points out that we are going to have to make some very complex and sensitive choices regarding uncomfortable health care issues. Who do we save and whom do we “pull the plug” on? Who do we operate on and whom do we say no to? This was brought to light further by the article in the Washington Post reviewing the first case of the separation of Siamese twins surgically performed by Dr. Ben Carson.

Consider this situation and the amazing cost of care.

Jenny Gold is a reporter with Kaiser Health News and wrote about Anne and Omar Shamiyeh who first learned something was wrong with one of their twins during an ultrasound, when Anne was 18 weeks pregnant.

“The technician was, like, ‘Well, there’s no visualization of his stomach,’ ” says 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.

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 during what is supposed to be a wonderful time — the start 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,” Anne says. “We really wanted to see what he was going to be like, and what life had to offer.”

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

The boy was named Kai, the girl Malia. Each weighed about 3 pounds. They were rushed immediately to the neonatal intensive care unit. That night Kai had his first surgery.

Malia went home after about five weeks. But Kai was far from ready. 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. CHARGE syndrome is a recognizable (genetic) pattern of birth defects which occurs in about one in every 9-10,000 births worldwide. It is an extremely complex syndrome, involving extensive medical and physical difficulties that differ from child to child. The vast majority of the time, there is no history of CHARGE syndrome or any other similar conditions in the family. Babies with CHARGE syndrome are often born with life-threatening birth defects, including complex heart defects and breathing problems. They spend many months in the hospital and undergo many surgeries and other treatments. Swallowing and breathing problems make life difficult even when they come home. Most have hearing loss, vision loss, and balance problems, which delay their development and communication. All are likely to require medical and educational intervention for many years.

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 — surgeons would insert a breathing tube directly into Kai’s neck to ease passage of air into his lungs.

“It seemed awful,” Anne recalls. “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,” Rogers says, “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,” Anne says. “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.”

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

Deidre Miller, a registered nurse in the NICU, says she was one of just a handful of nurses willing to be part of his primary care team. It was clear to all of them, she says, 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 he had joy in his life,” she recalls. “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. In one study, for instance, oncologists realized that their young patients would not recover months before the parents recognized it.

“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 says.

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 his birth. It would have to be done if Kai was ever to leave the hospital.

The surgery wouldn’t help, doctors explained, and Kai might die during the procedure. 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 says.

Two weeks later, Kai developed an infection the doctors couldn’t treat. On June 5, 2013, he died in his mother’s arms.

There were real costs to Kai’s long 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 very 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 six months of life. Born two months prematurely herself, she had physical and speech delays; although at age 3, she’s already caught up.

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

But Anne, who is now studying to become a nurse in the NICU, says she does not regret giving their son the best possible chance at life. But the cost of $11 million for a very small chance of survival one wonders, does this help the sustainability of the system?

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

Now consider, in contradistinction, my case regarding wellness and our disregard for paying for keeping patients well instead of paying when they get sick, the basis for our present dilemma in healthcare today. Almost 20 percent of the people in low-income communities who die of colon cancer could have been saved with early screening. And those premature deaths take a toll on communities that can least bear it.

Lower-income communities in the United States face $6.4 billion in lost wages and productivity because of premature deaths due to colon cancer, according to researchers at the Centers for Disease Control and Prevention.

Analytics

Review this table of Colon Cancer Death Rates By County-Level Socioeconomic Status:

Colon Cancer Death Rates

Adjusted death rates per 100,000 among people 50 to 74 years old (2008-2012)

Source: Hannah Weir, Centers for Disease Control and Prevention

Credit: Alyson Hurt/NPR

“It’s tragic not only for the lives lost, but it’s tragic for the communities,” says Hannah Weir, a senior epidemiologist at CDC who led the study. “That’s money that’s not being diffused back into these already disadvantaged communities.”

The researchers looked at colon cancer deaths from 2008 though 2012 for people between 50 and 74 years of age. They figured out the preventable deaths by comparing the death rates in high-income counties compared to those with lower incomes. The higher-income areas were defined as those in which at least 85 percent of the population had graduated from high school.

Colon cancer used to be more common in white people with higher incomes, but over the past few decades screening has reduced their risk to the point that African-Americans now have higher rates.

“We know that colorectal cancer screening saves lives, and we know that people in these communities are less likely to be screened for cancer, so it’s detected at a later stage,” Weir says. “They’re more likely to die from cancer.”

Screening options include fecal occult blood tests, which are not invasive, as well as sigmoidoscopy and colonoscopy. The U.S. Preventive Services Task Force recommends colorectal cancer screening for men and women aged 50–75 using high-sensitivity fecal occult blood testing (FOBT), sigmoidoscopy, or colonoscopy. (The decision to be screened after age 75 should be made on an individual basis. If you are older than 75, ask your doctor if you should be screened.) Where feasible, the 25 states and 4 tribes in CDC’s Colorectal Cancer Control Program provide colorectal cancer screening and follow-up care to low-income men and women aged 50–64 years who are underinsured or uninsured for screening, when resources are available and there is no other payment option.

Colorectal cancer screening tests may be covered by your health insurance policy without a deductible or co-pay.

What about the rest of the middle-income patients? Pay out of pocket because we all have such high deductible insurance policies????

The researchers came up with the $6.4 billion number by comparing the differences in potential years of life lost due to premature death: 194,927 years in lower-income communities compared to 128,812 in higher-income communities.

The data was presented Friday at the American Association For Cancer Research conference in Atlanta.

Also, consider some of the changes in the “suggested” use of mammograms and MRIs for breast cancer surveillance.

Cutting costs help with sustainability for the system, but counts on the middle class demographic to shoulder the cost of health care in this country. How long will the middle class tolerate a system where they pay the most and get the least from the health care system?

Then consider California and their liberal attitude regarding illegal immigrants. Adam Shaw a Politics Reporter for FoxNews.com. wrote that over half of all illegal immigrants in California earn incomes so low that they would be eligible for the state Medicaid system Medi-Cal, a new study has found, just as California is about to extend the health insurance to children in the country illegally. Also, remember that our liberal politicians want to welcome more and more, now, Syrian immigrants, further stressing the healthcare finances.

The non-partisan Public Policy Institute of California concluded that, should the deep blue state choose to go further and expand the program to include all illegal immigrants, 51 percent of them would have incomes low enough to be eligible for the program.

The study estimates that there are approximately 2.6 million illegal immigrants living in California, and so approximately 1.4 million would be eligible for Medi-Cal benefits should they be extended to them.

In some areas, such as Los Angeles County, the number of illegal immigrants eligible rises to 58 percent.

To qualify for Medi-Cal on income, a family must be earning less than 138 percent of the federal poverty line. In real terms, for a family of four the eligibility cut off is $32,913.

Critics of California’s immigration policy described the findings as evidence of the “self-inflicted costs” the state has incurred due to poor policy decisions.

“This is a consequence of policies California has implemented over many years that have induced a lot of people to settle in California who will rely heavily on government services,” Ira Mehlman, a spokesman for the Federation for American Immigration Reform, told FoxNews.com.

“These are the self-inflicted costs of essentially saying to people, ‘come here and settle illegally and take advantage of us,’” Mehlman said.

In October, Gov. Jerry Brown signed legislation that extended Medi-Cal to illegal immigrant children as of 2016, which is estimated to apply to approximately 170,000 children.

Some lawmakers in the state see the move as only a first step, remember the Syrian immigrants also, however. State Sen. Ricardo Lara advocates expanding health insurance to all illegal immigrants in the state. An early version of his bill failed after being priced at more than $1 billion, the LA Times reported.

“We have made tremendous progress in California this year to address these health disparities by expanding access to health care coverage for all children, but as this report indicates there is so much work still to be done,” Lara told FoxNews.com.

“That work continues with SB 10 next year, to expand Medi-Cal to uninsured, undocumented adults and to remove barriers to the state exchange to allow undocumented immigrants who can afford it to purchase insurance with their own money.”

Mehlman says that despite the costs that would be associated with expanding Medi-Cal, he believes California may eventually open up health care programs to more illegal immigrants.

“You would think the cost would damage the chances of it happening, but if you look at the way the California legislature has operated for the last 10-15 years, it seems even as they’re dealing with tight budgets and cutting services for other people, they keep coming up with new benefits for people who are in the country illegally,” he said.

“The nature of politics in California leaves the possibility they’ll do this in spite of the costs.”

Again, we must consider who will finance the continual “expansion” of the “give away” Affordable Care Act and when will we all wake up to the reality of the true situation? Is this system sustainable and where will the “cuts” be made? And yes, unless we increase the funding using increases in taxes, cuts will be made.

Who will we decide to save and who will we allow to die?

At what age will your health care warranty run out?????

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