HEALTH-CARE HELL
DOUGALL, A. KENT MAC
HEALTH-CARE HELL One man's descent into the abyss Igot a sinking feeling about my decision to entrust my health to Kaiser Permanente the moment I arrived at the big health maintenance...
...The anticonvulsant was a bizarre choice since it matched none of my symptoms...
...But few were accepting new patients and getting an appointment with those who were would take— predictably—two months...
...What no friend told me, however, is that insisting on seeing a doctor sooner rather than later typically results in an appointment with the least experienced, least qualified doctor on the staff...
...The test was for a genetic marker, known as HLA-B27, associated with a family of arthritis, one type of which inflames the ligaments and tendons where they attach to the heels...
...At one point I was taking no fewer than four drugs: an anti-inflammatory (Clino-ril), an analgesic (Darvocet), an antidepressant (Nortriptyline), and an anticonvulsant (Tegretol...
...Stressed out by the professional demands placed on him at Kaiser, and with personal problems of his own, my primary-care doctor went off on an indefinite leave of absence and was still out five months later...
...In the nine months I had been away, he and his colleagues had become affiliated, along with several hundred other formerly independent physicians, with a 500-bed Berkeley hospital in a managed-care network designed to keep patients, cut costs, and stay competitive in an increasingly "get big or get out" industry...
...That was nice to know, but it came seven weeks after I had used the splints day and night, only to have them aggravate my heels...
...made an off-the-cuff diagnosis that proved grievously off the mark...
...He also loaded me down with drugs...
...How wrong we were...
...But they did...
...It was logical, even defensible, for this "cost-effective" HMO to decide that the waitees should include me...
...For between the time we authorized the switch to Kaiser in November 1993 and when it took effect January 1,1994, my feet started hurting— bad...
...Get in fine, No...
...I was told that if and when he returned, he would no longer be anyone's primary-care doctor...
...He wrote out a referral to Kaiser's podiatry department that entitled me to attend a "heel pain class" with a dozen plantar fasciitis sufferers five weeks later...
...No insurance forms to fill out...
...If Kaiser made it too easy to see doctors, hypochondriacs with nothing better to do would clutter up waiting rooms and impose trivial complaints on busy doctors...
...Classes, I soon learned, are one of the ways Kaiser holds down the workload on its doctors so it can avoid hiring more of them...
...Before the morning was over, it was clear that in spite of Kaiser's reputation for delivering quality care at a reasonable cost, there are a lot of things in the Kaiser system besides wheelchairs that need fixing...
...This standard includes restricting patient choice of caregivers and access to specialists, inserting a layer of gatekeepers between patients and physicians, giving short shrift to emotional health problems, and basing doctors' compensation partly on the amount of treatment they avoid and deny...
...Dropping him for Kaiser may not have been a sin, but it added to my suffering...
...We could pick our primary-care doctor and he or she would take care of the rest, referring us to specialists as needed...
...Without this standard equipment, the only way I could avoid dragging my feet along the sidewalk and possibly injuring them further was to keep my knees raised...
...The prospect was scary, given what had preceded my visit with the Kaiser rheumatologist...
...Helping me regain my health seemed low on this HMO's list of priorities...
...I attributed the pain to having done too much nutter kicking in the swimming pool one day...
...But I noticed a new name, Alta Bates Medical Associates, on the door of the suite of offices he shares with several other family practitioners...
...But she knew what to do with the more painful foot: she put it in a cast...
...The presumption throughout the system is that care must be strictly rationed lest it be abused...
...I tried working the system once again...
...Joining Kaiser has turned out to be the most painful mistake of my life...
...Our friends, who were already Kaiser members, promised we would get one-stop, all-inclusive care...
...This rheumatologist had not suspected a systemic condition at that time...
...In retrospect, my old fee-for-service, small-practice family doctor looks better than ever...
...Another two months to find out...
...said I had plantar fasciitis in both feet...
...Membership in HMOs is past the 50 million mark, and industry experts predict HMOs will account for nearly half of the health-care market by the year 2000...
...These plans have a financial interest in delaying and denying service because they receive the same fee no matter how much or how little care they provide...
...But hobbling around the Graduate School of Journalism there was more than I was up for...
...I could choose a new primary-care doctor...
...As a substitute I was given a pair of strap-on plastic splints to wear in bed at night and while sitting or lying around the house during the day...
...Typically, patients are denied care they formerly received without question, and the care they do receive is downsized, with doctors, physical therapists, and other caregivers spending less time with patients...
...I seemed in no danger of that...
...My visit with the rheumatologist was no exception...
...Can my own unhappy experience be laid to bad luck, inexperience in "working" the Kaiser system, or some other personal aberration...
...It copes by rationing therapy sessions to thirty minutes, half the time I got in private care, and by limiting the number of sessions—in my case, to six...
...Repentant, I returned to his care last September following complications caused by all the anti-inflammatory drugs I had been taking...
...Since my primary-care physician had yet to be assigned, I was out of luck...
...Plantar fasciitis is inflammation of the thick sheet of dense fibrous tissue that connects the heel bone to the toes on the underside of the foot...
...I felt trapped in a medical maze without a guide to help me find the way out...
...After a few yards I realized I wouldn't be able to sustain the muscular effort this required...
...I returned to the specialist who had examined my feet the preceding December just before I joined Kaiser...
...medical practice, of course, but seems especially pervasive at Kaiser...
...Despite this, the first available appointment with a Kaiser physical therapist was in two and a half weeks...
...But he was friendly and accommodating...
...But they weren't falling my way...
...It was time to give up on Kaiser, to admit the system had me beat...
...I phoned the rheuma-tologist's appointment/advice nurse and told her I still couldn't walk and was in too much pain to wait another two months...
...I decided to go outside for help even though it would mean paying for it out of my own pocket...
...July 21, it announced...
...My wife let me off at the entrance to the center's parking garage and I hobbled on painful feet into the garage-attendants' office...
...Like the cast, the splints kept the foot at a right angle to the leg...
...just a nominal $5 co-payment when visiting a doctor or picking up a prescription...
...More likely your problem is rheumatological, the neurologist said, writing out a referral...
...Kaiser had just so many doctors—and way too many patients...
...8456513, and be grateful for whatever crumbs of care fall your way...
...The Kaiser rheumatologist I finally got to see in late July conceded as much...
...Alone among half a dozen doctors, he suspected an inflammatory systemic condition from the start...
...Solo and small-group practitioners are joining managed-care networks in order to survive...
...Instead of trying Kaiser again, I pulled out my checkbook and went back to my private-care rheumatologist...
...I had won a skirmish in what I continued to consider an unevenly matched battle against the Kaiser system...
...Now he did...
...it was all available under one roof, or at least in the cluster of buildings at Kaiser's medical center on Oakland's north side...
...One day it came...
...The nurses who typically run these classes dispense useful advice that in many cases adequately substitutes for an appointment with a doctor...
...He pointed to the clues: the unlikelihood that either plantar fasciitis or peripheral neuropathy would afflict both feet simultaneously, the fact that my heel pain lay behind and along the sides of the heels, that x-rays showed pitting of the heel bones from chronic inflammation, and that back x-rays revealed moderate osteoarthritis of the lower spine...
...Plantar fasciitis pain usually comes on gradually over months or years and is most intense when first getting out of bed and walking in the morning, diminishing as the foot stretches out...
...My medical-records file was checked out to another doctor I had never heard of—why, neither of us knew...
...Was there no way to speed up the process...
...I eagerly awaited the postcard in the mail that would notify me of my appointment with a rheumatologist...
...And still no diagnosis...
...And lo and behold, Kaiser found a way to squeeze me in with the rheumatologist the following week...
...My Kafkaesque struggle to break through Kaiser's all-but-impermeable institutional detachment, to get someone— anyone—to take my problem seriously, is a cautionary case study of the haphazard care all too commonly dispensed by prepaid medical plans...
...But Kaiser has been slipping...
...But both coordination and continuity easily get lost in the shuffle at Kaiser...
...Desperate for help, I tried to get an appointment with a Kaiser sports-injury expert who had treated two of my friends, only to learn that seeing a specialist requires a referral from one's primary-care physician...
...The part-time G.P...
...Hundreds of them, some on crutches, others in wheelchairs, filled Kaiser-Oakland's waiting rooms on any given day, while hundreds of others occupied its hospital beds...
...I replied that a two-month delay was unacceptable, given the two and a half months I had already waited and the pain and disability I was still in...
...What could be simpler...
...Would Rheumatology have one...
...And Kaiser's performance in meeting—or not meeting—its 6.6 million members' expectations is significant because Kaiser sets the "cost-effective" standard of medicine that both nonprofit and for-profit health-maintenance organizations (HMOs) and other "managed-care" health plans across the nation are scrambling to emulate...
...Fairly common among white men, attachment arthritis when mild sometimes goes undiagnosed for decades...
...Substituting drugs for time and attention pervades U.S...
...It couldn't have expanded so impressively if it didn't do a lot of things well...
...He was right...
...This young woman didn't attempt to diagnose my foot condition other than to say, "It could be a tendon...
...By now it was time to see the neurologist...
...He said the splints kept this tendon stretched, preventing it from healing, and so was counterindicated in my case...
...M A. Kent MacDougall teaches journalism at the University of California, Berkeley...
...For the first time in thirteen years of university teaching, I canceled a class because of illness...
...This is useful in cases of plantar fasciitis...
...But limping about did nothing for the pain in the casted foot, while the additional stress it placed on the uncasted foot caused it to flare up...
...I had to settle for an appointment with one of the part-time, fill-in general practitioners whom Kaiser is increasingly relying on in lieu of taking on more full-time physician "partners...
...This oligopolization is not improving health care...
...And he wasn't getting any help...
...He ordered a blood test that came back positive...
...When my heel pain flared up and both feet swelled up a week after I saw the Kaiser rheumatologist, I had no hesitancy in making my choice...
...Nearly three months into the system, and here I was, still bouncing around, begging for attention...
...It was Monday, January 3, 1994, two days after my membership in the Kaiser Foundation Health Plan took effect, and I was getting my first painful lesson in how things work—and don't work—at Kaiser...
...Childhood feelings of being ignored and un-cared for that I thought I had resolved came roaring back...
...Should I have been content at this point to drop my outside rheumatologist and let Kaiser carry on alone...
...He seconded the course of treatment my outside rheumatologist had prescribed, assured me that "we can carry on here," and gave me a return appointment in two months...
...The ten pounds I had lost from an already lean frame had reduced my weight to 145, the lowest since I was fifteen years old...
...When we met in his examining room, he had no idea who I was or what other doctors had found...
...So my wife returned the damaged wheelchair to the garage and I hobbled on my damaged feet the rest of the way...
...It was now mid-May, four months since my heels had flared up...
...My primary-care doctor was willing, but he just wasn't able to figure out what was wrong, much less what to do about it...
...Kaiser defines "an urgent medical problem [as] one that requires attention within twenty-four to forty-eight hours," and it includes "mild to moderate pain" as such an urgent problem...
...A wait of two to three months for an appointment with a specialist is par for the course at Kaiser...
...I started having nightmares of being lost and endangered in scary settings—a rundown underground shopping arcade, a midnight warehouse, an empty cafeteria— that were stand-ins for the labyrinthine basement complex at Kaiser where I went for x-rays, blood tests, and podiatry...
...He ordered x-rays of my back and referred me to a "back-care class" for instruction in home exercises and ways to avoid aggravating my condition...
...The heel pain was so severe I couldn't walk, much less leave home...
...Meanwhile, cost savings are dissipated on "utilization reviewers," who micro-manage each request for treatment...
...By now it was late December, time for only two whirlpool, ultrasound, and massage treatments at a physical-therapy center in Berkeley before it was Kaiser's turn to take over...
...A Kaiser physical therapist assessed my condition and requested an urgent-care appointment within a week, explaining that patients with less urgent problems routinely wait two months before starting physical therapy...
...There are classes for patients with arthritis, asthma, back pain, cataracts, diabetes, and a dozen other maladies...
...But it shouldn't have taken Kaiser more than six months...
...Some of them would die if they didn't get it...
...We had been told it lent wheelchairs to Kaiser patients who needed assistance getting to their appointments...
...Some hospitals, along with insurers such as Blue Cross of California, are converting from nonprofit to for-profit status...
...He gave my feet a good going-over only to conclude, "I don't see neuropathy...
...HEALTH-CARE HELL One man's descent into the abyss Igot a sinking feeling about my decision to entrust my health to Kaiser Permanente the moment I arrived at the big health maintenance organization's medical center in Oakland...
...Only one in eight medically insured Americans is still covered by traditional fee-for-service insurance...
...You realize, of course," my doctor explained after welcoming me back, "everyone's going Kaiser...
...On January 3, a Monday, I presented myself at Kaiser's physical therapy department in Oakland with my painful feet and a photocopy of a letter my private-care specialist had sent to my family doctor describing my condition and prescribing physical therapy two or three times a week for four to six weeks...
...However, when I finally got in to see the neurologist, he disclaimed knowledge of or responsibility for the prescription, and I concluded it was just my primary-care doctor's well-intentioned sop to soothe my disappointment over not getting an earlier appointment with the specialist...
...Others are merging or selling out to national chains...
...And, in any case, how much did it matter...
...Even then, conducting an eighty-minute class around my dining-room table invariably left me exhausted and sent me to bed...
...Had a single doctor, even a G.P., been coordinating my case and providing continuity, he or she might have put the clues together and suspected attachment arthritis...
...Diagnosing my condition was no snap, then...
...Working the system clearly wasn't working...
...I seemed in a downward spiral of pain, fatigue, weakness, and depression...
...The apprentice podiatrist agreed the cast probably was doing more harm than good...
...No need to go elsewhere for an x-ray or blood test...
...So my primary-care doctor's hunch had been off...
...She also drove me to the University of California campus several times...
...Unless you scream, nothing happens at Kaiser," one advised...
...Six sessions might have sufficed if complications had not set in...
...The primary-care doctor I was finally assigned and given an appointment with two months after my arrival at Kaiser was plainly at a loss to explain either my painful feet or my aching back...
...Worse, the cast prevented me from swimming, which I considered essential for easing both my backache and the emotional ache of being reduced to semi-invalidism...
...Kathleen became my lifeline to the public pool in Berkeley where I swam and to Kaiser in Oakland...
...Doing one of the home exercises prescribed by my therapist, an exercise designed to stretch the calf muscles and thereby to loosen up the feet, instead inflamed the heels of both feet and set my lower back to aching...
...But I didn't have plantar fasciitis, according to the full-fledged podiatrist I eventually got to see, but rather inflammation of a tendon on the outside edge of the heel...
...Savings are also drained by stepped-up advertising and sales promotion, lavish executive salaries, and generous shareholder benefits...
...Kathleen and I figured on continuing to coast along in good health, seeing doctors infrequently, and needing Kaiser mainly as insurance against an unlikely catastrophic illness or injury...
...An appointment I had with him was canceled...
...Kaiser's indifference to it was especially disturbing...
...He guessed that the trouble with my feet was peripheral neuropathy, a localized nerve disorder, and referred me to Neurology...
...BY A. KENT MacDOUGALL I took a seat in the last wheelchair available, only to find it lacked foot rests...
...Nonetheless, the G.P...
...The day before my scheduled July 21 appointment, I had gotten a phone call that the rheumatologist was sick and would be unable to see me, and that the next available appointment would be in another two months...
...I reneged on my office hours, and my students agreed to attend seminars at my home a mile from campus...
...After four days I wanted out...
...My blood pressure, normally 140/72, had shot up to 170/86...
...My personal misadventures at Kaiser last year included misdiagnoses of my foot condition, inappropriate treatments that worsened it, an unsupervised, uncoordinated, scattershot approach to my case, waits of two to three months to see doctors, and the passage of a full six months for an accurate diagnosis...
...As employers shift the financial burden of providing health-care benefits to their workers and retirees by making them pay more for traditional fee-for-service reimbursement insurance, HMOs and other managed-care plans are fast taking over the medical delivery system...
...These folks needed help even more than I did...
...A specialist our family doctor referred me to diagnosed my foot condition as possible tendinitis and prescribed rest, ice, and physical therapy...
...Unfortunately not...
...So what if I couldn't walk, only hobble in pain...
...He misdiagnosed my foot condition as plantar fasciitis...
...I couldn't stand, much less walk, without pain...
...Hospitals are setting up managed-care networks of their own in order to compete...
...My mysterious foot affliction was also hard to take psychologically...
...You'll love Kaiser," a number of Berkeley friends told my wife, Kathleen, and me before we signed up with it...
...It could be the transverse fascia...
...A 1994 survey conducted for ten major California employers ranked Kaiser near the bottom among fifty-two health plans in two categories: member satisfaction with doctors, and waiting time for appointments...
...On the basis of what I told him and a hurried look at my x-rays, the Kaiser rheumatologist confirmed my outside rheumatologist's diagnosis...
...But my primary-care doctor added it to the drugs already sloshing around in my system after I asked him to lean on Neurology for an earlier appointment...
...The G.P...
...He said the neurologist I had an appointment with in two and a half months couldn't see me sooner, but had suggested I take the anticonvulsant in the meantime...
...There were lots of other members in even worse shape...
...Some would have to wait...
...As I was to learn, Kaiser just doesn't have enough physical therapists to meet the demand...
...Neither could I drive because just resting my heel on the floorboard next to the accelerator was excruciating...
...Ihad a burning sensation in both heels even when I was off my feet...
...My second came courtesy of a recent podiatry school graduate serving a residency at Kaiser...
...The cast came with a sandal, permitting me to walk...
...who misdiagnosed my foot condition as plantar fasciitis was my first lesson...
...Kaiser has grown from the World War II health service for Henry J. Kaiser's California shipyard and steel-mill workers into the world's largest nongovernmental health-care system...
...Kaiser's own membership surveys show widespread dissatisfaction with access and service, and its self-confessed "poor performance in this area" is costing it business...
...Tell them you can't walk and you can't wait," a second said...
...My symptoms didn't fit, inasmuch as my heel pain came on suddenly, and was least bothersome when getting out of bed in the morning, increasing as the feet stretched out...
...In other cases, including mine, classes merely delay diagnosis and treatment...
...Well, if you don't like July 21," she said, "I have an opening on July 27...
...Only after I stopped using the splints did the inflammation in my heels begin to subside...
...You've got to work the system," my friends who were loyal Kaiser members reminded me...
Vol. 59 • March 1995 • No. 3
