Rights Tested as Kidney Patient Fights to Survive : Woman Blames Lawsuit for Refusal by Specialists to Provide Treatment

An Ojai woman who depends on life-sustaining dialysis treatment three times a week contends that she has been refused medical care by kidney specialists from Santa Barbara to Simi Valley because of a malpractice suit she filed against one of them two years ago.

Jeanie Joshua, a 38-year-old former gym teacher, also is being dropped by her current physician as of Nov. 4 because he said he cannot find another doctor willing to care for her in the event he should need to leave town.

“This is a nightmare,” said the frail, 87-pound Joshua, who can go only three days without dialysis. “I’m really nervous. They actually have the power to put me out on the streets.”

But Ventura County and southern Santa Barbara County kidney specialists, of which there are only about a dozen, say they are merely exercising their right not to treat a patient they consider difficult and overly aggressive about directing her own medical care.

“The situation now is just not tolerable,” said Dr. David Doner, the Santa Barbara physician who now provides her with dialysis treatment. “Our relationship has gotten very difficult. The emotional strain has gotten to the point where it’s detracting from my freedom to grow professionally.”

Poses Rare Dilemma

The conflict--whether the result of a conspiracy among physicians, as Joshua charges, or simply personal friction--is a rare dilemma that raises serious questions about the rights of both patients and physicians, particularly in regards to life-supporting treatment, say medical experts.

A physician is entitled, for whatever reasons, to sever a relationship with a patient or refuse to accept a person as a new patient, they say. But patients, even the most abusive and disruptive, should be entitled to access to life-sustaining care, they add.

“It sounds to me that there’s two sets of rights in collision here,” said Charles McFadden, director of communications for the California Medical Assn. “It’s certainly ethical and legal for a doctor not to want a person as a patient. . . . But she’s also within her rights to raise hell.”

Joshua said three groups representing a total of 11 Santa Barbara and Ventura County kidney specialists have refused to see her, and Doner said he has personally contacted six local specialists without luck.

“Jeanie has been locked out,” complained her husband, Sholom, a Ventura County children’s services social worker.

If Joshua cannot find a local kidney specialist to take her case, she still can receive her dialysis treatments at UCLA Medical Center, 80 miles from her mountain home. But she has rejected that alternative, branding it as “slow death” because of the grueling commute, particularly in her weakened condition.

However, Dr. Allen Nissenson, director of UCLA’s dialysis program, said kidney patients in rural areas routinely travel several hours for treatment, adding that Southern California’s 137 outpatient dialysis clinics form the highest concentration of such facilities in the United States.

“From one perspective, it’s ridiculous because she would be passing other dialysis clinics along the way, but from another, it’s not that different from what patients have to do in other parts of the country,” Nissenson said. “Although it’s unfortunate . . . that’s life.”

In the few such cases that have been decided by the courts, judges have generally upheld the rights of physicians first, said David Anast, executive editor of Nephrology News and Issues, a monthly journal on kidney treatment based in Huntington Beach. But, he said, provisions have usually been made for some care to be provided, either on a rotating basis among clinics or at a public hospital.

‘Entitled to Be Kept Alive’

“Even in the worst possible circumstances--where the patient has done practically everything to alienate himself--he is still entitled to be kept alive,” Anast said.

Joshua, however, said she is not a combative person jeopardizing her own treatment, but rather a bright, questioning patient--one who is being unfairly denied for having sued a Santa Barbara kidney specialist in 1986 for allegedly using unpurified water in her dialysis machine.

“It’s an out-and-out scandal,” said her husband. “What has she done to be put in this position?”

Life for Jeanie Joshua five years ago was a different story altogether. She kept herself busy teaching physical education at Ojai Valley School and offering private yoga classes, while her husband built their redwood home at the edge of the Los Padres National Forest.

But all that changed when Joshua, diagnosed in 1979 with lupus, a rare immunological disease that tends to hit middle-aged women, lost her kidney functions to the illness and was left forever dependent on dialysis machines.

For four hours each Monday, Wednesday and Friday, she found herself hooked to a whirring box that filters the blood her own body is unable to cleanse. Under the skin of her left thigh, just above her skirt line, an artificial vein serves as a kind of pin cushion for the large needles that are repeatedly inserted.

‘Aware of Independence’

“It’s been terrifying,” she said. “I was always a person very aware of my independence.”

Her lack of independence soon became evident as she struggled to find a kidney specialist sympathetic to her desire to help make the decisions affecting her treatment. The result, she said, was a series of confrontations and medical emergencies that left her with a deep distrust for the profession.

“I think Jeanie and Sholom are looking for someone who will be up front with them and totally honest,” said Dr. Doug Nelson, who has been the couple’s family practitioner in Ojai for seven years. “I don’t think they’re looking for someone who is perfect, just someone who is willing to treat them as human beings.”

Her first run-in with a kidney specialist occurred in 1983, when she came under the supervision of a four-doctor medical group with offices in Ventura and Oxnard, the only such group in western Ventura County.

One of the physicians recommended surgery to determine the extent of the damage that her kidneys had suffered, an operation she said she considered excessive and alarming. When she consulted a Los Angeles specialist for a second opinion, she said he warned her that such surgery was unnecessary and could be dangerous for a lupus patient.

Left Doctors’ Group

She then left the Ventura doctors, who have refused comment on the incident, and began seeing Dr. Michael Fisher in Santa Barbara. It was under his care, which lasted from late 1984 to early 1985, that Joshua contends she was endangered by negligent and reckless treatment.

In a lawsuit pending in Ventura County Superior Court, she alleges that Fisher and about 20 other defendants, including a Santa Barbara dialysis clinic and the manufacturer of the dialysis machine, failed to provide sterile treatment and caused her to undergo emergency blood transfusions. Fisher has declined to comment.

In a stab at greater independence, Joshua then began treating herself at home with a peritoneal catheter, a device that allowed her to insert a tube into her abdomen and dialyze at night while she slept. Such treatment required only infrequent visits to doctors, and she said she saw several in Los Angeles over the next 2 1/2 years.

But after a disagreement with one of the physicians about treating a resulting infection, she began looking for another kidney specialist and in April, 1988, she turned to David Doner.

Under Doner’s supervision, she removed the catheter and returned to her previous dialysis method, beginning in June with a nursing company that provided her with equipment and treatment at home.

Bizarre Circumstance Arises

Then, in a bizarre turn of events that led to Doner’s decision to discontinue their relationship, Joshua alleges that the nurse attending her bungled the dialysis and sent her to the emergency room of the Ojai Valley Hospital, in shock and losing consciousness.

It so happened that Doner was on vacation at the time and the physician who was to replace him was a partner of Fisher, the target of the Joshuas’ legal attack.

According to Jeanie Joshua, she lay in critical condition in the Ojai hospital for two hours while her family practitioner tried to persuade the physician, Dr. Darol Josef, to accept her at Cottage Hospital in Santa Barbara for emergency dialysis.

Josef, who would not comment on the incident, finally accepted Joshua for emergency treatment, but once Doner had returned, declined to provide backup care, Joshua said.

“The worry of not providing optimal backup coverage for you hinders and interferes with my opportunities to spend time with my family and pursue my career goals,” Doner wrote to the Joshuas on Aug. 8. “This concern weighs heavily on my mind and heart.”

In an attempt to relieve his responsibilities, Doner said he made arrangements the following month for Joshua to see Dr. Kant Tucker of Simi Valley. Tucker, in an interview, said Joshua was confrontational when he talked to her on the phone and insisted on directing her medical care to an extreme degree.

“I told her, ‘As a physician, I am responsible for your health and you cannot make medical decisions by yourself,’ ” Tucker recalled. “She said, ‘You would not be a suitable doctor for me, then.’ ”

Joshua remembers the conversation differently. “When I told him about the litigation, he was obviously upset about it,” she said. “He said he didn’t want to see me.”

As Nov. 4 nears, Joshua said she is nervous that the only treatment left for her might be in a hospital emergency room, which would be obligated to accept her in a life-threatening situation. She is a candidate for a kidney transplant, but does not know when such an operation might be made available.

Arthur Caplan, director of the Center for Biomedical Ethics at the University of Minnesota, said the predicament reflects a unique dilemma between medical rights and responsibilities that has yet to be resolved.

“There’s been a gap in public policy,” Caplan said. “There’s a right to have treatment provided. But we still haven’t sorted out who’s going to provide it.”