Helpless as companion dies

Joe John Sorce never thought it would end this way. In a hospital room with his longtime companion, Mary Clark, as she took her last breaths. He, holding her hand, unable to do anything about it.

"I felt so helpless," he said. "I couldn't believe I didn't have anything to say about this. I said, 'Mary, don't die on me, please.'"

These days, Sorce paces the room of his cramped Swenson Street apartment. He frets about bills he has received from doctors. He didn't have a voice in her care, "but they want me to pay the bills?"

The 63-year-old Sorce in recent weeks had fought to keep the woman he calls "my wife of 18 years" on life support at the hospital.

Before she died, a battle would wage over who would decide when Clark would be removed from life support and who would decide, Sorce or Clark's estranged children.

What ensued exemplifies the uneasy reality of end-of-life concerns: the legal, medical, ethical and moral issues that burst into the national consciousness during court battles between the husband and parents of Terri Schiavo, the Florida woman who remained in a vegetative state for 15 years before life support was finally disconnected.

Clark, 53, suffered a stroke Oct. 19 as she and Sorce watched a baseball playoff game between the Tampa Bay Rays and the Boston Red Sox at the El Cortez.

Paramedics took Clark to Valley Hospital, where Sorce signed her in and where she remained in the emergency room for three days.

"They said it was too crowded then to get her into intensive care," Sorce recalled. "It was difficult, but Mary was responding to me by squeezing my hand and opening her eyes and looking at me, so I know she was hanging in there. And the medical staff was treating me like I had a role in her life."

That all changed, he said, when she was taken to intensive care.

Because Nevada doesn't honor what Sorce said was a common law marriage, doctors and nurses told Sorce he could play no role in medical decisions on her behalf.

Instead, medical authorities twice consulted with the woman's estranged daughter on whether to take her off life support.

Clark's daughter, Morgan Miller, said a Valley doctor told her on two occasions that her mother was "terminal" and that there was no hope. Miller said that's why she gave permission for her mother to be withdrawn from life support.

The first time she gave permission was Oct. 29. It was the same day that Sorce's attorney had gone over to the hospital.

"I asked them (hospital officials) not to take any action on that day, because I was going to file a petition for guardianship for Mr. Sorce," said Marina Kolias, who Sorce had hired in an attempt to get him named as Clark's guardian.

Kolias said she received an emotional phone call later the same day from Sorce, who was visiting Clark at the hospital. He told Kolias that Clark had been withdrawn from life support.

"Apparently right after I left their office, they talked with Morgan Miller to take Mary Clark off life support," Kolias said. "What was the big rush? That seems ethically and morally corrupt to me. They disrespected Mr. Sorce and they disrespected me. I was crying."

Kolias said after she learned of Valley's action she rushed to the courthouse and was able to get an Oct. 30 emergency hearing before Clark County Guardianship Commissioner Jon Norheim. He ordered that Clark be put back on life support, allowing Kolias to get a second opinion on Clark's health.

At a subsequent Nov. 5 court guardianship hearing, Kolias produced an affidavit from Dr. Michael Karagiozis, a physician who had reviewed medical records.

Though Karagiozis said Clark had suffered a "significant intracranial vascular accident (stroke)," the medical documentation "clearly indicates her condition is improving, is not stationary, and that she possesses some level of consciousness which is sufficient enough to follow simple commands.

"Mary Clark is not brain dead by any clinical definition. ... It would be premature in the extreme to withdraw essential life support from a conscious patient with some potential for spontaneous improvement."

Norheim granted a "temporary special limited guardianship" to Sorce following that hearing, allowing him access to Clark's medical providers. But he refused to give Sorce the authority to make any medical decisions on Clark's behalf.

"The judge followed the law," Kolias said. "He was fair. Unfortunately, Mr. Sorce had no legal standing in Nevada."

Nevada law defines a terminal condition as "an incurable and irreversible condition that, without the administration of life-sustaining treatment, will, in the opinion of the attending physician, result in death within a relatively short time."

And if a person determined to be in terminal condition by the attending physician has not made a declaration regarding life-sustaining treatment, the physician is to consult first with the spouse of the patient. If there is not one, adult children will be contacted.

Sorce is dismayed that Clark's daughter was the one into whose hands the decision was placed.

"Her daughter didn't care whether she lived or died," Sorce said.

In a brief phone conversation from her New Mexico home, Miller said she had "no relationship" with her mother, who she said left her as a young child.

Josh Miller, Clark's son, said he allowed his sister to make the decision. "She told me that doctors said there was no hope for my mother," he said. "I think that's pretty clear."

In a phone call from his Massachusetts home, he too said he had no relationship with his mother.

"My parents divorced when I was young, and I didn't see her," he said. "If this Sorce guy loved my mother so much, why didn't he marry her?"

According to Sorce, the only reason he and Clark did not marry was because of her earlier divorce.

"She thought it might change our relationship into something bad," he said.

Sorce said they met while waiting for a bus in Escondido, Calif. "One of our big first dates was Disneyland."

He and Clark, both telemarketers, went everywhere in Las Vegas by bus.

They arrived in Las Vegas from California within the past year; neither has health insurance.

Valley Hospital spokeswoman Gretchen Pappas said a patient is only taken off life support when judged terminally ill by a physician and after consultation with a relative.

Teri Nolan, the hospital's administrative director of patient safety and regulatory affairs, said Valley officials always follow appropriate legal guidelines.

Sorce said he received word in the late afternoon of Nov. 19 that hospital officials had again received permission from Clark's daughter to withdraw life support.

"I received a phone call from Mr. Sorce that evening about this, but there was really nothing more we could do legally," Kolias said.

Clark died early on Nov. 20.

Though she is critical of the hospital, Kolias acknowledges that the letter of the law has been followed.

As for the doctor who offered his expert opinion for Sorce, he says of Clark: "I obviously don't know what shape she was in on Nov. 19. I didn't examine her then."

As an outgrowth of the case, Kolias said she has become a firmer advocate of people making living wills designating their wishes regarding end-of-life situations.

"I hate to see anyone go through the kind of heartbreak Mr. Sorce has," she said.

Pappas and Nolan point out that a living will, or advanced directive, can be prepared for free.

Pappas said people who are interested can go to www.livingwillockbox.com and fill one out. It's a simple three-step process that only takes a few minutes.

The Valley Health System and other hospital systems have paperwork that serve the same function.

"You need to make sure you and your loved ones' wishes are clear to everyone," said Pappas, adding that too often people find themselves in an uncomfortable situation that could have been prevented by a just a little foresight.

Sorce wishes he and Clark had thought about such matters.

"We were both feeling well and didn't see something like this coming. But people either have to get legal documents drawn up or get married."

Sorce does have some say in the aftermath of Clark's death.

He is in charge of taking care of her remains as per Clark's wishes. But he finds that he doesn't have the financial means to give her the burial she wanted.

Receiving bills for her care right now "seems like rubbing salt in the wound."

Kolias believes the bills started going to Sorce because he signed Clark in at the emergency room and it was just assumed he was her husband.

Valley's Pappas agrees that any medical bills going to Sorce are just an administrative error.

Sorce doesn't want anybody to go through what he has.

"When you really love somebody, you should be the one who has the say about life support," he said, choking back tears. "I'll never forget how when they took it off the last time, how she started gasping for breath. I felt so helpless."

Contact reporter Paul Harasim at pharasim@reviewjournal.com or 702-387-2908.