IN MY WORK, I write, usually about health policy matters. I also serve as a hospital commissioner. In my lift, I am a patient, a role which takes time -- too much time. In all these capacities, I read a huge amount of boilerplate about health care.
Sometimes I get confused. I do not know which is the never-never land, the written word of the (I think) reality. The other night I struggled to stay awake while browsing through a document with the straight-faced title "Environmental Assessment of the Hospital Industry, 1979," published by the American Hospital Associaiton. I read that changes in the age composition of the population -- more older patients with chronic illness -- would challenge the hospital industry to "expand its focus on 'caring' to supplement hospitals traditional "curing' function. This will involve greater attention to the emotional and psychological needs of patients and their families, especially chronically and terminally ill patients."
Caring vs. Curing. This terminology studies the literature, especially the nursing literature. But are they really different?
I am lying still in my Washington hospital bed, minding my own business. Chronic, yes. Terminal, not yet. My room is par for the course -- drab, colorless, a large TV set like an idol on the wall. A nurse comes in to check on me. She is young, Indian, no credit to Mrs. Gandhi.
"What's the matter with you?" she wants to know.
I tell her I have just had an episode of "true vertigo." But my basic ailment is metastatic breast cancer (which she could have seen on my chart.)
"Why?" she persists. She asks if I had been to the doctor for checkups before I fell ill. I reply in a strained voice that I had been checked every three months over a decade's time, but had gotten cancer anyway (exactly like my grandmother).
Not only did I see the doctor, I stopped smoking, did exercises, in other ways lived healthy.
Nothing stops her. My disease seems to her my fault. She makes no move toward me, even to inquire if I need anything, and observes that I should have talked to the doctor about avoiding its spread.
My head begins to ache, my patience to run out. I advise her that indeed I had talked to many specialists about avoiding spread. When she starts muttering about "fourth stages," I tell her firmly I would rather not discuss the matter any more. She leaves; I feel lousy.
I am in another hospital -- Memorial Sloan-Kettering in New York City. Here extra effort is put into making things look, feel and taste cheerful -- bright paintings, even tapestries grace lobbies and corridors painted orange, yellow, blue. Each bed has its own telephone and tiny TV set on an adjustable goose-neck arm, volunteers bring the new patient a vase containing a single pink carnation. The nutritionist works with my fussy, elderly roommate for 15 minutes, trying to find her a diet that is at once tasty, bland and Kosher. Later I am wheeled downstairs on a stretcher, Demerol-bleary. I wait to be admitted to the myelogram room. Someone gives me a lemon-stick to suck; I start to cry.
Two technicians rally round, jolly me, accept my pain. "This is the place to cry," one soothes, "not in your room where you have to keep a stiff upper lip for visitors." Then, skillfully: "Care to tell us what's the matter?"
I search my brain for an adequate answer: "All these awful things, and nothing seems to work."
"Nothing seems to work, or nothing seems to help?" she asks.
I perk up; after all, I have been helped. I feel better.
Back to the boilerplate. I read the direction of national health policy is "toward reducing the capacity of the inpatient sector of the hospital industy in relation to the population in order to control costs." In other words, get those patients out of the hospitals faster.
But neither I nor any of my friends have met those doctors who "overutilize" hospital beds, putting patients into the hospital too easily and keeping them there too long. I have found it hard to get past the close scrutiny of the peer review committee and into a hospital unless I was scheduled for an operation or in extremis (this is particularly true at Sloan-Kettering, a better mousetrap almost always filled to capacity). I have found it equally hard to stay in, and many of my friends and family have been sent home after three or four days, teetering and tottering -- whether they've had a baby, a hernia operation, or experienced an accident or mugging.
In between hospital and home is a no man's land which the health care "system" has not been imaginative at filling. Sister Rosemary, a crackerjack Sloan-Kettering social worker, places me in an exception to this rule, "hospital housing." I have a comfortable apartment where my husband and children can visit and help me out, and I can easily walk the few blocks to the hospital for my daily radiation treatments. Even this arrangement has its Catch-22: though the price is right -- about $40 a day as compared to my $400-a-day hospital bed -- I would have been better off financially staying in the hospital, where my high-option Blue Cross insurance would have picked up the entire tab.
Back in Washington, I call the Visiting Nurse Association and a few similar agencies to see if I can get some extra help on the days when I have chemotherapy, when I feel terrible. But I cannot; I am not sick enough.
About 130 mostly elderly D.C. General Hospital patients have a different problem. They do not need the expensive "acute care" they get in the hospital. But they need some care and there are no nursing home beds open to them they can afford, so they stay on, getting what is technically described as "inappropriate" care and costing the hospital some $10 million a year instead of the roughly $2.3 million their care would cost in nursing homes. Searching for solutions to help patients, hospital and taxpayers as chair of the D.C. General Commission's Planning and Development Committee, I find an HEW "swing bed" demonstration program used largely in rural areas. We are about to apply for a grant which would enable us to demonstrate that an inner city hospital can set aside a number of "swing" beds which could be used for either acute or sub-acute care as the need might be, and reimbursed accordingly. But we find the program has been so successful that it has been frozen while Congress considers whether to apply it nationally. Cath-22 again.
Great reams of computer printouts come in the mail from George Washington University Medical Center each month. The computer stands as the new arbiter; we patients are in its hands. I try to monitor its judgments. My husband and I have paid insurance premiums over the years, we deserve the benefits that are due us, but at the same time, we want to deal fairly with the insurers -- and so help keep costs reasonable for everyone.
Sometimes we catch a mistake: A consultant enters his charge under the wrong code and the insurance company refuses to pay it. I complain; the doctor's secretary erases the charge and re-records it under a different code; months later it shows up correctlly in the computer prints.
Sometimes we catch what seems to be a mistake. In January I get a bill for $125 for hospital care the previous September. I was in the hospital at that time, but I do not even remember meeting the doctor and cannot recall his name. Puzzled, I write the doctor that there must be some mistake. We correspond in vain, he says that he was "attending" on the neurology floor the month of my stay and his fee is in fact low. He knows I have only to give in and sign my insurance form and he will be paid.
The medical marketplace is unreal. My hospital bed costs -- $242 a day in Washington, $400 in New York -- are paper figures. There are buyers (us patients) and sellers (our hospitals, clinics, doctors and their aides), but we seldom face each other at the cash register. Dr. Thomas Fahey, my Sloan-kettering doctor, prescribes a new drug for me, tamoxifen, an anti-hormone developed in England. It costs about $100 a month at the time; my insurance will pick up 80 percent of the bill.
What do people who are uninsured (22 million) or underinsured (another 20 million) do? How about the nearly two-thirds of the poor not covered by Medicaid? I ask Dr. Fahey, a fine physician who worries about these questions too. He says he has a patient he wanted to put on tamoxifen. No way could she afford it; she lacked the insurance. Nevertheless, he sent her down to the pharmacy with a prescription, telling her he'd find a way to pay the bill (the same is true at George Washington or D.C. General -- if there's no insurance, someone, usually the taxpayer, will foot the bill for what's needed, whether it be a CAT or expensive medication.) He feels we need a national health insurance plan covering "not nose jobs," but honest costs of catastrophic illness.
Back to the "Environmental Assessment." Regulation of the health care industry will increase and intensify, I read. Regulation will "become more politicized both in terms of greater conflict between regulators and the regulated and in terms of greater visibility of health care as a political and electoral issue . . ."
My bones ache and pains wax and wane. As they wax, so do the news stories about the nontoxic drug interferon. A way has been found to synthesize this rare antiviral substance manufactured in the body; reports of its great potential as a cancer treatment abound. I read a congressional committee has returned the HEW secretary's budget to her, telling her to spend more on interferon.
I spend the day on the telephone, trying to find out what's what. Might interferon help me? If so, can I get some? The doctors are so unanimous in answering the first question that I don't bother with the second. They doubt interferon is for me. In fact, they have been disappointed in it. Thus far what success it has shown has been largely with lymph, not breast, cancers. One doctor says the only cancer center that has reported encouraging results is M. D. Anderson, in Houston, and he feels they are inclined to be positive about everything. A breast patient of his had gotten hold of some interferon and grown worse after interferon treatment. this might have been coincidence, but he doubts it.
Washington doctors have experience with the "politicization" of health issues. One tells me that Rep. Claude Pepper has experienced in his family the unpleasant toxic effects of chemotherapy; with passionate philanthropist Mary Lasker urging him on, he has been advocating more federal funding for interferon. Like the Congress, I am frustrated at not being able to legislate faster cancer treatment research results out of the scientists. But I agree with the poet-physician Lewis Thomas, Sloan-Kettering's chief, that laboratory researchers someday soon will, in their building-block way, uncover the mechanism at the root of cancer. I feel sad that it will probably not be in time for me.