We devote vast resources to intensive, one-off procedures, while starving the kind of steady, intimate care that often helps people more.By
Atul Gawande
By 2010, Bill Haynes had spent almost four decades under attack from the inside of his skull. He was fifty-seven years old, and he suffered from severe migraines that felt as if a drill were working behind his eyes, across his forehead, and down the back of his head and neck. They left him nauseated, causing him to vomit every half hour for up to eighteen hours. He’d spend a day and a half in bed, and then another day stumbling through sentences. The pain would gradually subside, but often not entirely. And after a few days a new attack would begin.
Haynes (I’ve changed his name, at his request) had his first migraine at the age of nineteen. It came on suddenly, while he was driving. He pulled over, opened the door, and threw up in someone’s yard. At first, the attacks were infrequent and lasted only a few hours. But by the time he was thirty, married, and working in construction management in London, where his family was from, they were coming weekly, usually on the weekends. A few years later, he began to get the attacks at work as well.
He saw all kinds of doctors—primary-care physicians, neurologists, psychiatrists—who told him what he already knew: he had chronic migraine headaches. And what little the doctors had to offer didn’t do him much good. Headaches rank among the most common reasons for doctor visits worldwide. A small number are due to secondary causes, such as a brain tumor, cerebral aneurysm, head injury, or infection. Most are tension headaches—diffuse, muscle-related head pain with a tightening, non-pulsating quality—that generally respond to analgesics, sleep, neck exercises, and time. Migraines afflict about ten per cent of people with headaches, but a much larger percentage of those who see doctors, because migraines are difficult to control.
Migraines are typically characterized by severe, disabling, recurrent attacks of pain confined to one side of the head, pulsating in quality and aggravated by routine physical activities. They can last for hours or days. Nausea and sensitivity to light or sound are common. They can be associated with an aura—visual distortions, sensory changes, or even speech and language disturbances that herald the onset of head pain.
Although the cause of migraines remains unknown, a number of treatments have been discovered that can either reduce their occurrence or alleviate them once they occur. Haynes tried them all. His wife also took him to a dentist who fitted him with a mouth guard. After seeing an advertisement, she got him an electrical device that he applied to his face for half an hour every day. She bought him hypnotism tapes, high-dosage vitamins, magnesium tablets, and herbal treatments. He tried everything enthusiastically, and occasionally a remedy would help for a brief period, but nothing made a lasting difference.
Finally, desperate for a change, he and his wife quit their jobs, rented out their house in London, and moved to a cottage in a rural village. The attacks eased for a few months. A local doctor who had migraines himself suggested that Haynes try the cocktail of medicines he used. That helped some, but the attacks continued. Haynes seesawed between good periods and bad. And without work he and his wife began to feel that they were vegetating.
On a trip to New York City, when he turned fifty, they decided they needed to make another big change. They sold everything and bought a bed-and-breakfast on Cape Cod. Their business thrived, but by the summer of 2010, when Haynes was in his late fifties, the headaches were, he said, “knocking me down like they never had before.” Doctors had told him that migraines diminish with age, but his stubbornly refused to do so. “During one of these attacks, I worked out that I’d spent two years in bed with a hot-water bottle around my head, and I began thinking about how to take my life,” he said. He had a new internist, though, and she recommended that he go to a Boston clinic that was dedicated to the treatment of headaches. He was willing to give it a try. But he wasn’t hopeful. How would a doctor there do anything different from all the others he’d seen?
That question interested me, too. I work at the hospital where the clinic is based. The John Graham Headache Center, as it’s called, has long had a reputation for helping people with especially difficult cases. Founded in the nineteen-fifties, it now delivers more than eight thousand consultations a year at several locations across eastern Massachusetts. Two years ago, I asked Elizabeth Loder, who’s in charge of the program, if I could join her at the clinic to see how she and her colleagues helped people whose problems had stumped so many others. I accompanied her for a day of patient visits, and that was when I met Haynes, who had been her patient for five years. I asked her whether he was the worst case she’d seen. He wasn’t even the worst case she’d seen that week, she said. She estimated that sixty per cent of the clinic’s patients suffer from daily, persistent headaches, and usually have for years...
Today in Bioethics we'll talk "research." Things like clinical trials and research involving animals and their rights, and genetics, and epidemiology. We'll look at the funding gap between what we need to cure and where our research dollars are actually going, and at the moral imperative of genuine and informed consent. We'll look at disturbing instances of fraudulent and dishonest research. And we'll consider Peter Singer's claims about "speciesism."
The future of research is a daunting source of apprehension and speculation. Michael Sandel and Bill McKibben have aired serious concerns about genetic and other "enhancement" research as potentially catastrophic for our capacity to achieve or even recognize "meaningful" lives. Enhanced may not mean improved.
1. Name one of the basic requirements agreed upon by all codes devised to protect individuals from malicious research.
2. What decree states that consent must be gained in all experimentation with human beings?
3. Name one of four areas of research discussed in the book.
4. Which famous contemporary philosopher coined the term speciesism?
5. Name one of four R's used in international legislation pertaining to animal rights in research?
6. Dilemmas in epidemiological research illiustrate what general point?
7. What did Hwang Woo-suk do?
8. What is the term for altering the numbers in a calculation to make the hypothesis more convincing, with no justification form the research findings for such members?
9. What categories of human enhancement does Campbell enumerate, and what does he identify as its "extreme end"?
10. What is the "10/90 Gap"?
DQ:
- Can there really ever be "fully informed" voluntary consent, given the many unknown variables and unpredicted consequences involved in most research?
- Discuss: "Trials of pharmaceuticals may be driven as much by commercial considerations as by the likelihood of real therapeutic gain." 122
- What concerns do you have about the use of animals in medical research? Is speciesism one of them? 10 medical breakthroughs due to animal testing... PETA... Touring an animal research facility
- What limits, if any, would you like to see imposed on genetic research and the uses to which it may be put?
- Were ethical improprieties committed in the case of Henrietta Lacks, whose cells (HELA cells) were harvested without her consent? (Rebecca Skloot... BBC...CBS...)
- If "dreams of perfect health by the better-off will determine the research agenda" in the future, resulting in soaring health care costs and greater health "enhancement" opportunities for the wealthy, what should be done to insure adequate attention to "the health problems of most of the world's population"? 129
- Should we be worried about a "Prozac revolution" and a "brave new world" of somatically-induced apathetic bliss? 130
- Would you give special priority to any of Campbell's five enhancement categories (130)? Is "Transcendence"-style enhancement beyond the realm of reasonable concern (given the considerable monied interest of people like Larry Page)?
- Comment: "Why would we want such a 'posthuman' future? Are our lives better if we become physically stronger or more agile, or have an increased intelligence, or live for centuries?" 131
- Is the outsourcing of clinical drug trials to developing countries ethically defensible? 132
- How would you propose making research priorities "aligned to the needs of the majority"? 133
- Is it likely that biobanks and other communitarian initiatives will in the future "prioritize health research according to need rather than profit," particularly in the U.S.? Would you support such a reprioritizing? How?
- Have you seen Sicko? Care to share a review? Or of Michael Moore's latest doc'y?
==Also of note:
To enhance our SuperBowl experience-
It's the birthday of the first woman to graduate from medical school, Elizabeth Blackwell, born on this day in Bristol, England, in 1821. She wanted to become a doctor because she knew that many women would rather discuss their health problems with another woman. She read medical texts and studied with doctors, but she was rejected by all the big medical schools. Finally the Geneva Medical College (which became Hobart College) in upstate New York accepted her. The faculty wasn't sure what to do with such a qualified candidate, and so they turned the decision over to the students. The male students voted unanimously to accept her. Her classmates and even professors considered many medical subjects too delicate for a woman, and didn't think she should be allowed to attend lectures on the reproductive system. But she graduated, became a doctor, and opened the New York Infirmary for Women and Children. WA Feb3