Saturday, September 27, 2014

Living During an Age of Anxiety: A Reading List | Longreads Blog

When I am wracked with anxiety, I make a list of everything that is stressing me. These lists have included "transportation plans for this weekend," "living at home," "Sandy [my dog] dying," "getting props for the play" and "editing articles for The Annual." I don't write solutions. Sometimes, there are no solutions, or the solutions are not immediate, which makes me worry even more. Just writing down what weighs on my mind helps.

The act of writing moves these things out of my head, where they take up space in my subconscious, and makes them tangible and coherent. These lists are a part of my self-care routine—a routine I adopted when I suffered from a particularly nasty bout of depression in college. I use this ritual today, and I do other things too: I eat three meals every day; I get enough sleep at night; I read to relax; I take my medications; I clean my room; I listen to music or to podcasts; I call my friends; I sleep some more.

Here's another list: four authors who write about their experiences with anxiety, its roots and its bedfellows.

Finding Risks, Not Answers, in Gene Tests -

Jennifer was 39 and perfectly healthy, but her grandmother had died young from breast cancer, so she decided to be tested for mutations in two genes known to increase risk for the disease.

When a genetic counselor offered additional tests for 20 other genes linked to various cancers, Jennifer said yes. The more information, the better, she thought.

The results, she said, were "surreal." She did not have mutations in the breast cancer genes, but did have one linked to a high risk of stomach cancer. In people with a family history of the disease, that mutation is considered so risky that patients who are not even sick are often advised to have their stomachs removed. But no one knows what the finding might mean in someone like Jennifer, whose family has not had the disease.

It was a troubling result that her doctors have no idea how to interpret.

Such cases of frightening or confusing results are becoming more common because of a big recent change in genetic testing for cancer risk. Competing companies have hugely expanded the array of tests they offer, in part because new technology has made it possible to sequence many genes for the same price as one or two. Within the next year, at least 100,000 people in the United States are expected to undergo these tests. The costs, about $1,500 to $4,000, are covered by some, but not all, insurers.

The new tests build on the success of earlier ones for inherited risks of breast, ovarian and colon cancer, which can give people options for prevention, like getting screened more often, taking a drug to lower breast cancer risk, or having their breasts or ovaries removed.

But some doctors worry that the newer tests for up to 30 genes may open a can of worms, because the ability to find mutations has outpaced the understanding of what they mean. In some cases, tests find cancer-associated mutations for which there are no preventive measures, and the patient is left with a bleak prognosis.

Some genes were included "because they could be tested, not necessarily because they should be," said Dr. Kenneth Offit, chief of clinical genetics at Memorial Sloan Kettering Cancer Center in New York. He said that the testing companies are "rushing headlong into this era," and that "individuals are getting results we're not fully educated to counsel them on."

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Friday, September 26, 2014

Health care in Canada—how is the system performing? | CIHI

Your Health System is a web tool for the health sector and general public. It provides comparable, interactive data so that hospitals, regions, provinces and territories can compare how they measure up on 37 indicators related to

  • Access
  • Quality of care
  • Patient safety
  • Emerging health trends across the country

Tuesday, September 23, 2014

Health Researchers Will Get $10.1 Million to Counter Gender Bias in Studies -

In an effort to begin addressing persistent gender bias in laboratory research, the National Institutes of Health announced Tuesday that it will distribute $10.1 million in grants to more than 80 scientists studying a diverse array of subjects, including drug addiction, fetal development, migraines and stroke.

The researchers will use the additional funds to include more human participants — generally women — in clinical trials and to ensure that their laboratory animals, even cell lines, are representative of both genders. The money also will be used to analyze gender differences in the resulting data, officials said.

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Sunday, September 21, 2014

After Surgery, Surprise $117,000 Medical Bill From Doctor He Didn’t Know -

Before his three-hour neck surgery for herniated disks in December, Peter Drier, 37, signed a pile of consent forms. A bank technology manager who had researched his insurance coverage, Mr. Drier was prepared when the bills started arriving: $56,000 from Lenox Hill Hospital in Manhattan, $4,300 from the anesthesiologist and even $133,000 from his orthopedist, who he knew would accept a fraction of that fee.

He was blindsided, though, by a bill of about $117,000 from an "assistant surgeon," a Queens-based neurosurgeon whom Mr. Drier did not recall meeting.

"I thought I understood the risks," Mr. Drier, who lives in New York City, said later. "But this was just so wrong — I had no choice and no negotiating power."

In operating rooms and on hospital wards across the country, physicians and other health providers typically help one another in patient care. But in an increasingly common practice that some medical experts call drive-by doctoring, assistants, consultants and other hospital employees are charging patients or their insurers hefty fees. They may be called in when the need for them is questionable. And patients usually do not realize they have been involved or are charging until the bill arrives.

The practice increases revenue for physicians and other health care workers at a time when insurers are cutting down reimbursement for many services. The surprise charges can be especially significant because, as in Mr. Drier's case, they may involve out-of-network providers who bill 20 to 40 times the usual local rates and often collect the full amount, or a substantial portion.

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Wednesday, September 17, 2014

Panel Urges Overhauling Health Care at End of Life -

The country's system for handling end-of-life care is largely broken and should be overhauled at almost every level, a national panel concluded in a report released on Wednesday.

The 21-member nonpartisan committee, appointed by the Institute of Medicine, the independent research arm of the National Academy of Sciences, called for sweeping change.

"The bottom line is the health care system is poorly designed to meet the needs of patients near the end of life," said David M. Walker, a Republican and a former United States comptroller general, who was a chairman of the panel. "The current system is geared towards doing more, more, more, and that system by definition is not necessarily consistent with what patients want, and is also more costly."

Many of the report's recommendations could be accomplished without legislation. For example, the panel urged insurers to reimburse health care providers for conversations with patients on advance care planning. Medicare, which covers 50 million Americans and whose members account for about 80 percent of deaths each year, is considering doing just that, prompted by a recent request from the American Medical Association. Some private insurers are already covering such conversations, and many more would if Medicare did.

But some recommendations — like changing the reimbursement structure so that Medicare would pay for home health services instead of emphasizing hospital care, and so that Medicaid would provide better coverage of long-term care for the frail elderly — would require congressional action.

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Monday, September 15, 2014

$1.43 of every $100 in America goes toward hospital administration - Vox

America spends a lot of money on the paperwork that makes hospitals run— $218 billion per year, to be exact. That works out to 1.43 percent of the entire American economy is spent on hospitals' administrative costs. Of every $100 spent in America, that means $1.43 is going toward the billing specialists and schedulers that make hospitals here work.

Hospital administration has grown as a percent of the economy over the past decade, from 0.9 percent in 2000 to 1.43 percent in 2012, a new paper in the journal Health Affairs shows.

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Saturday, September 13, 2014

A Life-Saving Salt Binge -

"I can't . . . do this . . . anymore," the young man stammered to his father. The two had been working together in the father's heating-and-air-conditioning business for the past several weeks, ever since the son was fired from his job. His boss said that he never seemed to feel like working. And it was true. He was tired out by the tiniest effort.

The father turned to his 19-year-old son and saw his head slumped on the worktable. His eyes were empty. "My hands," he whispered through blue-tinged lips, "they are so cold." His fingers were also blue, although it was warm in the building. The father hurried over and half-carried him to the car.

At home in their small Oklahoma town, his wife, too, was frightened. "Take me to the E.R.," her son breathed. "I'm scared." By this point they'd been to the emergency room many times. "If they can't figure out what's wrong this time," the man told his wife, "we're taking him to Tulsa."

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Monday, September 8, 2014

When It's the Doctor Who Can't Let Go -

Sometimes it's the doctors, not the families, who can't let a patient go.

My elderly patient had lived much longer than seemed possible at the time of his cancer diagnosis. Ten years later, though, his relapsed lymphoma had become medically unstoppable.

The palliative care team was called in to manage his growing confusion and discomfort, and to discuss what we call "goals of care." That's what palliative care does: It focuses on keeping symptoms under control for the seriously ill and, for patients who can't be cured, addressing how they want to die, including the option of hospice care. Now that this patient's disease could not be restrained, what did he want? He could no longer answer, but his wife and son, sad but cleareyed, chose to stop all treatment aimed at curing his cancer.

Hearing this, his oncologist, standing beside me at the nurse's station, cried, heartbroken that her patient of so many years would not rally one more time.

That evening, though, the patient's primary care doctor came to the hospital, seeing himself, it seemed, as the cavalry. There was hope yet, he said: The patient needed rehab to make him strong enough for more chemotherapy, not palliative care and hospice. So the patient — disoriented and unable to speak — went to an inpatient rehabilitation unit. He died there, a few weeks later.

I'm sure the primary care doctor meant well, but there's no question that his actions made the situation worse because he deprived the patient and his family of comfort at the man's life's end. And this was far from the first time I've seen something like this happen. Such situations arise in part because modern health care still embraces a false dichotomy between curative treatment and palliation, between making a patient healthy and relieving his or her pain.

Palliative care itself suffers from an identity problem, in that many people equate palliation with hospice — i.e., end of life. This mistaken association can make a palliative care consultation feel like a death sentence to even the most open-minded clinicians, patients and family members. Striving for a cure is historically seen as a unique pathway that restores health; easing suffering is a separate, non-curative path that ends with the patient dying.

And it's true that palliative care does offer symptom management to patients who are expected to die soon, as my lymphoma patient was. But it is more than that: It also helps patients with long-term illnesses like congestive heart failure and chronic obstructive pulmonary disease, people who are expected to live with their illness, but need careful managing of their symptoms. If it becomes clear that a patient receiving palliation along with curative treatment will not survive her illness, then the palliative care group works with the medical team to help her make the transition to hospice and help her decide how to spend the last of her time on earth.

Palliative care can extend life, too. A well-known 2010 New England Journal of Medicine paper co-written by Jennifer S. Temel, an oncologist at Massachusetts General Hospital, established that patients with a certain type of lung cancer who received early palliative care not only reported better quality of life and reduced symptoms of depression, but also lived longer than patients who received only traditional oncology care — a result that has since been found with other forms of cancer.

Often, though, the palliative care team is consulted late in the illness, as was the case with my patient. One reason is money: To put it in the crass language of hospital accounting, palliative care is de-incentivized. It saves hospitals money by reducing costly and often futile care at the end of patients' lives, but earns little compared with the expensive drugs and scans used in curative treatment.

But another barrier is the attitude of physicians themselves. Many oncologists, focused on keeping patients alive for as long as possible and hoping, always, to beat the odds, find it hard to discuss what might happen if they don't.

It was the same with my patient's oncologist. Hearing about the move away from palliation to rehabilitation, she sounded relieved. "Well, if he goes to hospice he'll just die," she said — as if there were another alternative. She knew better than anyone that our bag of chemotherapy tricks was empty, but facing that reality proved too hard.

Had the palliative care team been consulted earlier, it could have worked with the primary care doctor, the nurses on the floor and the oncologist to understand and communicate the patient's wishes over a period of time, perhaps even when the patient could still speak for himself. Instead, the patient got lost in the back and forth, as did his family, caught between the rock of his imminent death and the hard place of arranging for rehabilitation that was presented as his salvation, but offered no real help or comfort.

Doctors face a difficult paradox: Their job is to keep patients alive, but part of that means keeping at bay the dark awareness that everyone dies. Because doctors are supposed to cure, efforts directed elsewhere, even palliative care, can feel like a surrender. But their job might actually be easier if they found a way to better use what palliative care can achieve for patients, and not only at the end of life.

Physicians also need to recognize that there are occasions when the patient's fate is not, in the end, the doctor's work. Every patient deserves care on his own terms, for each patient's life, and death, is his own.

Theresa Brown is an oncology nurse and the author of "Critical Care: A New Nurse Faces Death, Life, and Everything in Between."

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