The bewildering curse of face blindness

You have trouble remembering a name? Imagine being unable even to remember a face.

Oliver Sacks, the remarkable physician/writer/author/professor of neurology — what does he do in his spare time? — wrote a long and fascinating article in a recent (August 30) New Yorker in which he details a lifelong affliction with face blindness, officially known as prosopagnosia, the inability to recognize faces. What Sacks doesn’t do in his spare time is socialize comfortably. It’s hard to be comfortable when you might walk right past your best friend. (Or greet a perfect stranger you think is your next-door neighbor.)

I had made it through seven decades (Sacks and I happen to be the same age, but that’s about where the similarities end) without ever hearing of face blindness. Then one day renowned artist Chuck Close turned up on PBS NewsHour, discussing a new biography. At some point in the program Close mentioned that he was face blind. Come on, I said to myself and the TV screen. A creative genius known worldwide for, among other things, his remarkable portraits and he doesn’t know faces? Close went on to talk of how he works from photographs, largely because once he reduces a face to two dimensions he can commit the image to memory.

Sacks theorizes that the “flattening” allows Close to memorize certain features. “Although I myself am unable to recognize a particular face,” Sacks writes, “I can recognize various things about a face: that there is a large nose, a pointed chin, tufted eyebrows, or protruding ears.” But he is better at recognizing people by the way they move, their “motor style.” He is “reasonably good at judging age and gender, though I have made a few embarrassing blunders.”

Sacks writes that he avoids parties, conferences and large gatherings as much as possible in order not to have the inevitable embarrassment it brings. Consideration of how difficult it has to be to negotiate through life with such a problem makes the common complaint of, say, blanking on an old friend’s name (and don’t we all!) so trivial as to be embarrassing itself.

Sacks cites the work of research scientist Ken Nakayama, who “is doing so much to promote the scientific understanding of prosopagnosia.” Nakayama heads the Prosopagnosia Research Center at Harvard, on whose Web site one can learn about symptoms, causes, history and where the name came from (the Greek word for face: prosopon.) You can also find, on the site, tests and questionnaires to assess your own face recognition. Sacks is particularly appreciative of a notice posted on Nakayama’s own site which reads: “Recent eye problems and mild prosopagnosia have made it harder for me to recognize people I should know. Please help by giving your name if we meet. Many thanks.”

A very small gesture, for those who take face recognition for granted.

Patients fight hospitals (& not just Catholic hospitals) for proper care

“Suppose I wind up being taken to a hospital,” said the lady with the penetrating blue eyes and a lovely, long braid over her shoulder. “How can I keep them from doing all those things I don’t want — ventilators, feeding tubes…?”

The lady with the lush braid was among a small group of retirement community residents with whom I spoke yesterday about end of life choices. None of them fear death. All of them fear aggressive, unwanted treatment. A colleague and I had been invited to talk with them about documents (advance directives, POLST forms, etc) and legal measures that can help insure a compassionate end. But the distressing reality is that there are no guarantees.

This is where we are with health care: patients having to fight against doctors, hospitals, systems — and directives from Bishops — for the right to die in peace.

A recent Kaiser Health News article (KHN is a publication of the Henry J. Kaiser Family Foundation and unrelated to Kaiser Permanente) cited problems arising from directives to Catholic hospitals about a variety of issues. The directives, issued in November by the U.S. Conference of Catholic Bishops, changed the policy on feeding tubes, for example, from “presumption in favor of”  to an “obligation.”

“This obligation,” the bishops said, “extends to patients in chronic and presumably irreversible conditions,” such as persistent vegetative state, who might live for many years if given such care. A feeding tube is not required, however, if it wouldn’t prolong life, would be “excessively burdensome for the patient,” or would “cause significant physical discomfort.”The directive raises fresh questions about the ability of patients to have their end-of-life treatment wishes honored — and whether and how a health care provider should comply with lawful requests not consistent with the provider’s religious views. Hospitals and nursing homes do not have to comply with requests that are “contrary to Catholic moral teaching,” according to longstanding policy that, as in the case of the revised directive, applies to non-Catholic patients as well.

As the women in our group yesterday understand, you can wind up with unwanted treatment in all sorts of circumstances, not just when you’re dying.

Dr. Lachlan Forrow, a Harvard University medical ethicist and palliative care specialist, expressed strong concern about the new policy, stressing its potentially broad scope. “That gets to be a very, very large number of people,” said Forrow, who heads a panel developing recommendations for the state of Massachusetts on end-of-life care.

(A)ccording to Catholic officials and outside experts, the directive may well apply to a wider range of patients, those that it describes as having “chronic and presumably irreversible conditions,” though the organization representing Catholic health facilities downplays the impact. Experts say this affected group could include those with massive strokes, advanced Alzheimer’s disease, traumatic brain injury and Lou Gehrig’s Disease.

If a patient or family didn’t want a feeding tube “and the reason they don’t want it is they basically want to die, then the Catholic institution would explain to them they can’t cooperate with that and they would have to go to another institution,” said the Rev. Thomas G. Weinandy, executive director for doctrine at the bishops’ conference, who helped draft the policy.

Weinandy said “obviously the public should know what the directives say,” and patients and relatives “can easily download the directives or get a copy.”

Oh, sure. The EMT people are loading mom into the ambulance, and you ask them to wait until you download a few pages of papal edicts.

In the days before she died two weeks ago (in a non-Catholic hospital) my sister Jane occasionally showed signs that, though sleeping, she might be experiencing pain. My niece, who was keeping round-the-clock watch over her mother, more than once asked the attending physician for additional pain medication and was told, in a “There, there now, dear” voice that “We can’t hasten!!” My niece is a tenured law school professor.

Doctors make a lot of fuss about that “First, do no harm” business in the Hippocratic oath. Is withholding pain medication because it might cause death a few hours sooner than later doing no harm? Is inflicting painful, unwanted and unwarranted interventions for some obscure religious reason doing no harm?

Catholic Directive May Thwart End-Of-Life Wishes – Kaiser Health News.