With Merciful Speed : Battle With AIDS Ends for Mullican

The end came on Christmas Eve.

Last Thursday morning, an unusually mild, sunny day for late December in New England, 33-year-old Jeffrey David Mullican lost his 20-month struggle against AIDS. He died about 11:40 a.m. in a private room on the eighth floor of Massachusetts General Hospital, ravaged by a staphylococcus infection, internal bleeding and pneumonia.

The AIDS virus had also invaded his brain and rendered him delirious and incoherent much of the time. He was unable to speak, unable to focus his eyes, often unable to tell where he was or who was at his bedside.

Yet, as savage as the final hours were, the last weeks and months of his life contained more for which to be grateful and were touched with more meaning than is true for many of those who fall prey to one of humanity’s most unforgiving and isolating diseases.

Death Came Swiftly

For one thing, death came to him with merciful and uncharacteristic speed; the suffering and helplessness that many AIDS patients must endure for months touched Mullican only in the last weeks of his life. Moreover, by agreeing early on to participate in a risky trial of a new drug, Mullican found a measure of satisfaction in contributing to scientists’ expanding knowledge of AIDS.

As it turned out, the drug probably gave him almost a full additional year of life--a year that became an intensely painful and courageous odyssey to confronting death and attaining a new measure of peace with the living.

While he was often sick during the final months, until almost the very last Mullican remained able to exercise the independence that meant almost everything to him. He scored some small victories over the self-absorption that often blights the spirits of the desperately ill, and he found strength within himself to resolve the tensions that had developed--as they almost always do in such cases--between himself and his parents.

“The drug (azidothymidine, or AZT) changes the slope of the curve and (it) afforded much of the good time Jeff had,” said Mullican’s physician, Robert T. (Chip) Schooley, 38, an associate professor at Harvard University and a leading AIDS researcher.

“In some ways, it’s better to have had the rapid decline like this, after the end of a good 18-month course, than have a steady decline over the whole period. Without AZT I think we would have experienced last fall what we’re experiencing now. I don’t have any regrets about having given him AZT. Many good things happened.”

Among those good things was the development of an unusually strong bond with his family that was reinforced in this last month, beginning with his visit home at Thanksgiving.

“That was one of the things that was achieved in the more than 18 months that Jeff remained alive, and that was incredibly important,” Schooley said.

Mullican deteriorated rapidly in his last weeks. The disease--as it invariably does--had taken a dreadful toll. Once a husky and vigorous six-footer, he had wasted to about 115 pounds. By the time he was hospitalized the Sunday before Christmas, he was extremely debilitated and barely able to speak.

There was the bacterial infection, staphylococcus aureus, probably caused by one of the lines used to administer intravenous medication for a previous infection. In addition, he was suffering from his fifth bout of pneumocystis carinii pneumonia, a respiratory infection that frequently afflicts AIDS patients. He was also having mild gastrointestinal bleeding from an unknown cause. He had a high fever as a result of the staph infection and--as is tragically common--he had become increasingly confused and delirious because the virus had invaded his brain.

He was able to breathe on his own, although occasionally he received oxygen from a mask attached near his bed.

At times he was quite lucid.

He knew his older sister Judy was there. It was Judy, visiting from her home in the Midwest, who had helped get him to the hospital on Sunday night. And it was Judy who stayed with him until his parents arrived, stroking his forehead, mopping his face and chest with a cool towel and helping him let go with soothing words of relaxation.

Recognized Visitors

He knew his parents were on their way Wednesday and on Tuesday, 48 hours before his death, he recognized another friend who had come to visit. The visitor, one of his close friends, had adopted a baby some months before and she had sometimes sensed that Mullican was unhappy about the time the baby had taken from their friendship.

Now, however, he had moved beyond such feelings. The first thing he asked, in a barely audible voice, was: “How’s the baby?”

Yet, moments later, again in the grip of dementia, he mumbled something about being on a farm. Then, weakly, he tried to raise his hands and murmured: “My fingernails are so long.”

He could see but his eyes did not seem to focus. They rolled upward, staring vacantly as though reflecting his resignation and helplessness.

Asked if he was in pain, he shook his head no. Asked if he was worried, he nodded.

“He was frightened,” Schooley said. “He appeared just terrified.”

Mullican, the youngest of six children--he had three sisters, one surviving brother and another brother who died in 1974 of kidney disease--grew up near Washington on what he once called a gentleman’s farm. “We had horses and lots and lots of land.”

He described himself as the baby of his family. “I’ve been spoiled,” he said, smiling, in an interview more than a year ago. “I always got what I wanted.”

His mother, a devout Catholic, is a strong, outgoing woman with silver-gray hair and handsome features. His father, a retired contractor, is a man who feels deeply, his children say, but has difficulty showing his emotions.

As a youth, Mullican always thought he was different--although it was not until he grew older that he began to recognize that it had to do with his sexual orientation. “I knew there was something out of whack,” he said, adding: “In high school, I was the ultimate ladies’ man and dated extensively.”

High School Activities

In his senior year he was editor of the school newspaper. Mullican--who was to reject religion as a college student--also entered a religious phase toward the end of his high school years. He became active in a group called Young Life, an evangelical Christian organization that he later said “brainwashes high school students.”

Like many young adults in the late 1960s and early 1970s--the height of the Vietnam War--he went through a radical phase. He wore his hair long and chaired the Maryland chapter of an anti-draft group.

He began undergraduate studies at Johns Hopkins University in Baltimore but transferred in 1978 to the University of Denver, where he studied political science and mass communications. There he was to develop an enduring passion for the West, where he was to live for some years after graduation. He loved the clean air and the mountains, and took up skiing. Even in the last 18 months of his life he returned to the Rockies several times, thinking each time that it might be the last.

From childhood, Mullican had always made a point of his independence. It had been a shock to his family to learn that he was gay: he told his mother when he was a college student in his early 20s; other members of the family learned later.

Strained Relations

His homosexuality strained an otherwise close relationship. He maintained strong feelings for the family, but left home right after college and--except for holidays--did not visit often.

Thus, it was extremely difficult for him to ask anyone in the family for help as his illness became more severe.

Last fall, however, as he sensed he was losing ground, he had yearned to spend more time with family members. He complained to friends and members of his AIDS support group that he was dying and that his family was not there for him. It was easier to blame them for neglecting him, some replied, than to admit it was he himself who had created the distance between them.

His parents and siblings had always been supportive, especially after they learned he had AIDS, but they had all been conditioned by him to respect his desire for space.

“But I need them,” he told one friend while in one of his gloomier moods.

“Tell them , don’t tell me,” she replied. “I know they will be there for you, but they can’t guess how you feel. You have to tell them.”

Turned to Parents

Finally, he did. When he returned to his parents’ home for Thanksgiving, Mullican later confided to friends, he told members of his family how much he needed them.

“Before he went home he told me that although his family had been supportive in words, he felt he needed them more and had not been able to tell them,” said Henry Weinberger, the ‘buddy’ assigned to him more than a year ago by the local AIDS service organization. “That was a big breakthrough for him.”

Mullican’s family responded immediately. They dropped everything to be with him. “Jeff is very ill,” his mother wrote in a Christmas card to one of his friends. “The family is taking turns to spend as much time as possible with him. We’re hoping to bring him down for Christmas but we’re still not sure, even with wheelchair assistance.”

It was not to be. Instead, they drove to Boston.

“Before his parents arrived, I told him: ‘Your mother and father are coming today,’ and he nodded,” Weinberger said. “I’m sure he understood.”

Mullican had shared with Schooley his thoughts about the events over Thanksgiving.

“He has now come to terms with a lot of issues in his family that were difficult for him,” Schooley said before Mullican died. “It became clear in the last three or four months that if he’d asked his family to do something for him, they would have. They’ve been waiting for him to ask for help.

“The response they have shown to Jeff has meant a lot to him,” Schooley added. “Ultimately, it will mean a lot to them.”

During the early days of his illness, Mullican had chosen to gamble on the slender chance that his life might be saved by the experimental drug AZT, which had showed promise against a merciless affliction that has stricken nearly 50,000 Americans and killed more than half of them. And his life clearly was prolonged: normally, AIDS patients with pneumocystis live about 40 weeks after diagnosis; Mullican lived 80 weeks.

Encouraged by Schooley, Mullican had agreed shortly after he was diagnosed, in April, 1986, to participate in a national study of AZT, which has since been licensed in this country as the only drug for treatment of AIDS. He had grasped eagerly at the chance, knowing how bleak the alternative was, and he had begun his ordeal in typically combative style, determined to win.

Indeed, Mullican, a trade association executive, had enjoyed many months of good health, aware all along, however, that AZT was not a cure. Still he had allowed himself a certain measure of optimism, even after a series of physical and psychological setbacks that included the loss of his job because of his illness.

Last spring, however, he sensed that he was beginning to die. As his energy began to fail, so did his spirit. As winter approached, he talked often of suicide. Yet he held on.

“I think one of the major reasons he did not take his life was that spark of hope that is so human in all of us,” Schooley said. “It’s the one thing that keeps all of us going.”

Mullican’s last crisis began the week before Christmas. Feeling extremely weak, he went to the hospital that Thursday for a blood transfusion. His hematocrit--the measurement of the volume of red blood cells compared to the total volume of blood--was extremely low. Normal is 40 to 45; Mullican’s count had dropped to 22.

He had expected to go home to see his mother and father for the holidays and Schooley, though increasingly concerned about him, thought the transfusion would give him enough additional energy to do that.

“But he called me Thursday night and said he had a high fever,” Schooley said. “He also complained of a dry cough. We attributed the fever to the blood transfusion.”

His sister Judy was there, as was his “buddy,” Weinberger. “He came back to his apartment after getting the transfusion and was really wiped out,” Weinberger said. “He just went right to bed.”

Christmas Travel Plans

Still, there was no sign of how bad things quickly would become. Mullican telephoned a friend in Washington that day and made plans to meet her the Monday after Christmas. He complained of feeling tired but said he expected to fly down on Tuesday.

He spent most of the weekend in bed. “On Saturday, he had a panic attack and paged me three times that morning,” Schooley said. That was unusual for Mullican, who usually called Schooley only when there was a true emergency. “He said his sister had settled him down, but he kept telling me how guilty he felt putting everyone through all this.”

On Sunday, Judy found him on the bathroom floor in his apartment. He was unable to get up, and--though he had lost some 50 pounds--she could not lift him. He crawled to his bed.

“He was also complaining about abdominal pain,” Schooley said. “I asked if there was any blood in the stool, something that is often difficult to determine because blood from higher up often looks like tar. But blood turns out to be a pretty good laxative, and he was having some diarrhea. I asked if he could get to the hospital so we could get a stool sample, and he said it was just too much effort. He said he just wanted to go to bed and lie there.”

Test Made at Home

Weinberger went to the hospital to get a test kit. “Henry took it back there, but apparently misread it, because he called me and said it showed no blood,” Schooley said.

Later that Sunday night, however, “his sister called again and said she was really scared,” Schooley continued. “We got an ambulance.”

As it turned out, Schooley said, there was “quite a bit of blood in his stool,” a sign of bleeding in the gastrointestinal tract, although the doctors never determined what caused it.

“It could be CMV (cytomegalovirus) gastritis, or B cell lymphoma, or KS (Kaposi’s sarcoma, a rare form of cancer common in AIDS patients), although I doubt it’s KS, since he never had any on his skin,” Schooley said on the Tuesday before Mullican died. “It also could be an old-fashioned stress ulcer.”

Tests showed that Mullican’s blood sodium and oxygen were both low. He complained that his mouth was dry “so I asked the nurse to get him some ice chips and hard candy,” Schooley said. “Because his salt was low, we had to restrict his fluids.”

A chest X-ray indicated he was probably suffering from another mild episode of pneumocystis. As mild as it was, it was still quite severe for Mullican in his disabled condition.

Weakness a Complication

“This is superimposed on someone who is already extremely debilitated,” Schooley said on Tuesday, two days before Mullican died.

“He’s already had four bouts, and with each one he has lost something. AIDS patients tend to drag along and never quite get back to the capacity they had before each of the insults (bouts of the disease). He just lost ground each time. This is happening to somebody who has no reserve at all in terms of energy or body mass or desire to fight. He has that much less ground he can afford to lose.”

Over his last days, Mullican suffered more and more from dementia. He was confused. He had trouble finding words.

“The dementia we see with this disease is often striking,” Schooley said. “People appear to be coping very well on the surface and then suddenly fall apart. Everybody who is infected with this virus has virus in the brain. It has different effects on people, but up until a certain point, you can use a reserve capacity against virus-induced mental problems. But with all the other factors going on, it’s very easy to have central nervous system problems become very evident.”

IV Medicines Used

Two bottles hung over Mullican’s bed, with intravenous lines from both inserted in his right arm. The first contained Pentamidine, to treat his pneumonia. The second contained Ranitidine, a medicine to suppress the secretion of stomach acids. A bag collecting his urine through a catheter hung below the bed.

“They told me I have to be careful of bed sores,” Mullican muttered two days before he died, indicating he wanted to change position. A nurse, his sister and a friend helped him turn over.

“The major things we are doing for him are treating the pneumocystis and keeping him hydrated,” Schooley said.

Later that day, Tuesday, Schooley and the other physicians attending Mullican detected the staph infection and began treating that, too.

Essentially, that was all they would do. Based on Mullican’s earlier expressed request, they had already decided not to employ heroic efforts to prolong his life.

Schooley knew from the start of his relationship with Mullican that if it became clear he could survive only by extreme measures, this patient wanted to be allowed to die peacefully. Mullican had said over and over again that he was not afraid of death, that what he feared most was the process of dying.

He was terrified that he would become incapacitated and linger in that condition, dependent on others and unable to care for himself. Fortunately, this did not happen.

“Even in severe illness, people tend to follow the same patterns as they do in life,” Schooley said. “In a sense, Jeff’s feelings of self-worth and accomplishment were tied into his independence, into his being able to do things for himself.”

During the last six months, Mullican had begun to lose that control. It had become increasingly difficult for him to perform simple daily tasks, such as walking up stairs, driving his car or cooking.

“Jeff has been talking for a long time about being comfortable with dying, even taking his own life if he can’t carry on--if he has to rely on other people,” Schooley said shortly before Mullican died. “And he has been seeing the pattern in recent months of not getting back to where he was before. He’s been working through a lot of this all along.

“He has made it clear what he wants, both explicitly and implicitly, in terms of the way he has chosen to live and establish a series of goals,” Schooley continued. “He has said often that when he couldn’t do that, life would no longer be palatable to him. He doesn’t have a big support network in Boston, and moving back to his parents’ would be a surrender of sorts, a psychological defeat.

Other Infections Cited

“If we got him through this, we’d still be faced with six weeks of intravenous therapy for his staph. . . . We’d still have the cytomegalovirus (an earlier infection that, once it strikes, must be treated for life) and we’d have a patient who was incredibly debilitated and not really able to participate in his own care.”

Thus, Schooley said, “We’re treating his infection but not being as aggressive as we could be. We could have him in the intensive care unit. He could be intubated (a procedure in which a tube is inserted in the throat and attached to a respirator that pumps high concentrations of oxygen directly to the lungs). We’re following many of his laboratory parameters, but not as carefully as we could be.”

Schooley paused. “One of the more difficult parts of intensive care medicine is knowing when to employ it,” he said. “It’s not that difficult to take somebody into intensive care and intubate him, or change medications, or put a lot of intravenous lines into place. There’s a real temptation to do that, because you often get trapped into feeling that you didn’t do everything you possibly could have done.

“There are times, though, when the use of that technology is inappropriate. In my view, this is one of them.”

Doctor Tells Feelings

Nevertheless, the last days were not easy for Schooley, who had traveled the entire journey with Mullican, from diagnosis to death.

“We have the same feelings of inadequacy when it comes to this point in an illness,” he said. “We get some satisfaction out of helping the patient feel comfortable, and in helping the family cope. Without trying to sound callous, it’s one of the things that goes with being a doctor. It’s like being human. You experience death as part of the human condition.

“You have to be careful not to blame yourself for your patient’s death. You have to feel good about the things you did for the patient while he was alive, and not feel that his death is a manifestation of your failure. There aren’t many fields of medicine where you can practice and be happy. Failure is a part of the human condition.”

Mullican’s mother had been to see him two weeks before Christmas. His sister Jeannie had come the week before. When Judy telephoned their parents to tell them Jeff had been admitted to the hospital, it was unclear how serious his situation was. But since he could not come home for Christmas, his mother and father decided to drive up to Boston on Wednesday morning.

When they arrived, they found him in a seriously worsened condition. Overnight, his temperature had climbed to 104 degrees. Although he could speak, it took a monumental effort. Most of the time he lay in bed, eyes closed, inhaling oxygen through the mask.

By Thursday morning, he was not responding to voices.

Shortly after 11:30 a.m., as his parents stood in the hallway outside his room talking with Schooley, Weinberger--who had been sitting with his friend--emerged from the room to summon them. He was alarmed at a change in Mullican’s breathing. It seemed that he was taking longer, much longer, between breaths.

By the time they entered the room, Jeff was gone.

“He went so quietly,” his mother said on Christmas Day. “He just stopped breathing.”

Mullican’s family and close friends, as was his wish, will gather at his parents’ home tonight to share their memories of him in an informal memorial service. His body was cremated and his ashes will be buried in a family plot.