Part One
By: Jean Johnson for Medtech1“Degrading shift from person to patient – Indignities of a hospital stay”
“Waiting, waiting, waiting”
“Awash in information – Overwhelmed by choices”
After enough of these headlines appeared first on the front page of The New York Times and then in the editorial section during late summer of 2005, Body1 decided to go exploring. What we found was a medical profession that in many instances seemed behind the times – mired in 1950s models of patriarchal arrogance (that even the more recently minted female physicians seemed to have little immunity to).
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Along the way, of course, we discovered progressive programs and genuinely courteous attitudes marked with some sense that the sun does not rise and set according to physicians’ directives and pronouncements or the hierarchy of staff that runs to their defense. If it’s starting to sound reminiscent of the British Empire in its heyday it’s not surprising. The debate is about power and wealth – not to mention the physical well-being each of us prizes so highly.
If we’ve piqued your interest, come along on a three-part article that breathes the fresh air of open inquiry into a discussion often consider taboo. In part one – why do people feel abandoned by the medical system when it comes time to make hard choices? In the second part, how has it come to be that becoming a patient is too often synonymous with being treated in an infantile manner or worse like a soul devoid of feelings? And finally, in the third installment, what’s at the bottom of the interminable waits in physician offices.
Abandoned by the professionals
First on the Times chopping block was perhaps the most innocuous of the triad: Patients abandoned by their physicians when it comes time to make hard decisions about medical procedures or drug therapies. Cancer patient, mother of young children, and criminal defense attorney, Meg Gaines was the poster child for the newspaper. An account of Gaines’ successful fight to save her life after ovarian cancer spread to her liver is replete with oncologists leaving her out in far left field to make her own decisions.
Granted the treatment in question is a radical, cutting-edge procedure that is fully capable of taking the life of the patient it’s aimed at treating. Called cryosurgery, the regime injects liquid nitrogen into tumors to shrink them prior to chemotherapy.
“Who will decide?” the bald, exhausted Gaines asked one of the Los Angeles oncologists she consulted in her nationwide odyssey to save her life. The Times termed the physician’s reply a recitation in “what has become the maddening litany of medical correctness: ‘We’re in the outer regions of medical knowledge and none of us knows what you should do. So you have to make the decision based on your values.’”
Gaines ended up choosing cryosurgery, and she’s still alive to tell about it several years after the fact. The lawyer, though, has such a bone to pick with the medical profession over her ordeal that she helped found the Center for Patient Partnerships in 2001 at the University of Wisconsin-Madison law school. The center helps connect patients with serious illnesses with physicians that will help them make informed decisions. The work also includes training law, business, public policy and medical students in the area of patient advocacy.
The model of patient-physician partnerships Gaines is trying to nurture can’t come too soon for Ginger Baker Ph.D., who remembers all too well her experience determining whether or not to take estrogen for her hot flashes in the late 1990s. A political science professor in Northern California, Baker explains that she was not particularly well-informed about estrogen. “Instead of discussing benefits and risks in anything other than very cursory terms, the doctor I was seeing at the time handed me a pamphlet and said to let her know what I wanted to do after I read it.”
Heidi Nelson M.D., of Portland, Oregon empathizes with Baker’s experience and said, “Women do need doctors who will take time with them. So if you got a brochure, you might say ‘I need a more comprehensive discussion. Who would you suggest?’ Most doctors won’t be offended and would be willing to recommend someone specially trained in women’s health.”
The idea that a patient needs to worry about offending the physician doesn’t play well with Baker. “The real question is whether I’m offended. Me. The patient! I’m the one who hires the doctor in the first place – and the one who pays the bills.”
Baker also takes issue with the basic premise that generalists can prescribe a drug on the one hand, but that on the other they can’t articulate benefits and risks adequately enough to help their patients make informed decisions.
“It seems totally bogus to me. When I see any professional who’s hung up their shingle, they need to deliver. I don’t care whether they are a lawyer, professor or physician. That’s what professionalism is all about – advising those outside your field in an area you’ve studied adequately enough to understand in complex terms,” said Baker. “If I’m not getting too far out on the limb here, I think the highly privileged economic status of physicians in this country has led to some serious violations of that ethic. When you start to getting accustomed to all the elitist perks of doctor-hood – and I’m talking about the medical version since everyone knows that doctors like myself who have Ph.D.’s aren’t real doctors – it’s just a short step to thinking you’re in a class far above the rest of humanity. Once that happens – once you start getting the big bucks and people bow and scrape to you day after day, you’re bound to start abusing your power sooner or later. It’s just human nature.”
Continued in Part Two
