Authors: Deborah Tatar
Posted: Wed, July 06, 2016 - 1:47:55
My mother is dying. She had a rare gastric cancer in her pyloric valve. The amazing doctors at UCSF took out 70% of her stomach and a bunch of lymph nodes, stitched her up, and gained her another 13 months of good life. Unhappily, she was not among the 50% who make it to five years without recurrence. A few insidious cells escaped annihilation and now she has an inoperable recurrence at the head of the pancreas. She’s done with chemo. Her body cannot tolerate more, and she doesn’t want to spend the rest of her life in pain. Atul Gawande’s “Being Mortal” has become our bible, and she is very clear about what she wants: to live as she has done—independently, swimming every morning, meditating—without pain as long as she can and then to die quickly. She’ll have radiation because it might reduce her pain and probably won’t hurt.
Her parlous state gives the small events of her life more meaning.
Because she lives pretty far away from UCSF, another oncologist—we’ll call him Simpson—closer to home, had administered the chemotherapy before and after her big operation, under the direction of her main oncologist at UCSF.
There are a lot of chores associated with being ill. Part of avoiding pain is that she has a port, a line to a vein in her chest cavity that can be used to administer medicine or draw blood without pain. It results in an odd protrusion under the tight skin of her breastbone, as if she had implanted a plastic bottle cap. The port has to be flushed once a month and since she actually does not want to die, especially from infection, she is assiduous about making sure that this is done.
Last week, she thought to spare herself a lengthy trip into San Francisco so she called Dr. Simpson’s office to see if she could get the port flushed at his office. After the initial call, she called me in high dudgeon:
I called and after I waited and hit the all the buttons, eventually I left a message and then when the receptionist finally called me back, I explained the situation and she said that if I waited ten days, I could have an appointment during my swimming time, which was bad enough, but I had to have an appointment with the doctor first. I asked why I had to see Dr. Simpson if all I needed was my port flushed, and she said, “It’s the rule.” I asked what kind of rule that was—the doctor knows me, he’s in contact with my oncologist (at UCSF) and he knows that I’m not having any more chemo—but the receptionist just kept saying that it was the rule. I was so mad!
It wasn’t the effort of seeing the doctor that enraged her. It was what she perceived as waste. “They’re just money-grubbers! They’re getting rich off of Medicare!” She had resolved that, instead of seeing Simpson to get the port flushed, she would haul herself two hours each way by car, BART (Bay Area Rapid Transit), and shuttle bus to San Francisco.
After arranging the flush with UCSF (“They were so nice!”), she called Dr. Simpson’s office back to cancel. Then, she called me in a state of enhanced indignation. She reported that after the receptionist canceled the flush, she said, “But what about your appointment with the doctor?” Mom replied, “I don’t need an appointment with the doctor.” The receptionist said, “But there’s a note here that says that you are supposed to have a check up with him every four to six months. You need to make an appointment.” Mom reasonably explained, “He’s not my main oncologist. He just administered the chemo that I had last year. I’m not having any more chemo. I don’t need to see him.” This is where things began to be weird. The receptionist replied, with some anxiety, “But there’s a note here that says that he wants to see you every four to six months.” “But I’m not having any more chemotherapy.” “But there’s a note here. The doctor wants to see you.” Evidently, they went around the block a couple more times in increasingly emotional tones until Mom finally replied, “I’m not having any more chemo. I’m not coming back to see Dr. Simpson. I’m having radiation and then I’m going to die. Good-bye.”
If we were to argue about this interaction, Mom would see the receptionist as autonomous and responsible for her own behavior. I’m a softer woman than my mother and I would have felt sorry for the receptionist. From my point of view, Mom was arguing with someone who was bondage to an information system.
Yet, Mom’s ground truth was rooted not only in her lifelong habit of expecting and demanding dignity from herself and others, but also in the test of this approach in the face of impending death.
The system that dominated the receptionist’s behavior had no place for Mom’s actual condition, although Mom’s care was its putative object. It attempted to erase her pain, her fatigue, her agency—her identity. She resisted. Dealing with such systems is not part of living a good life. Yet resisting such systems might be—by resisting, she was asserting herself and also asking the receptionist to be better than the system. And the receptionist might have seen her power to behave differently in similar situations. Something might have been learned.
There are two views about how socio-technical systems should be designed. One is that the computer system itself should have been designed to encourage negotiation between the receptionist and my mother. The other is that the receptionist should be trained to take more power over the system. But the need for either or both of these is invisible. It is rare for the death of a thousand cuts suffered by countless system users to be visible to even one other person.
I admire my mother’s insistence on resistance to the machine, writ large. I would like to die, and to live, as she has. I cannot do anything about her cancer or her impending death, but we designers can strive to perceive and advocate for issues of dignity and compassion even when these issues are not widely acknowledged.
Posted in: on Wed, July 06, 2016 - 1:47:55
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