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Months to Live

Helping Patients Face Death, She Fought to Live

LAST MOMENTS Robert Pardi Jr. in the apartment he shared with his wife, who died in his arms. “I would have loved to say goodbye,” he said.Credit...Todd Heisler/The New York Times

By the time she was 38, Dr. Desiree Pardi had become a leading practitioner in palliative care, one of the fastest-growing fields in medicine, counseling terminally ill patients on their choices.

She preached the gentle gospel of her profession, persuading patients to confront their illnesses and get their affairs in order and, above all, ensuring that their last weeks were not spent in unbearable pain. She was convinced that her own experience as a cancer survivor — the disease was first diagnosed when she was 31 — made her perfect for the job.

In 2008, while on vacation in Boston, she went to an emergency room with a fever. The next day, as the doctors began to understand the extent of her underlying cancer, “they asked me if I wanted palliative care to come and see me.”

She angrily refused. She had been telling other people to let go. But faced with that thought herself, at the age of 40, she wanted to fight on.

While she and her colleagues had been trained to talk about accepting death, and making it as comfortable as possible, she wanted to try treatments even if they were painful and offered only a 2 percent chance of survival. When the usual cycles of chemotherapy failed to slow the cancer, she found a doctor who would bombard her with more. She force-fed herself through a catheter and drank heavy milkshakes to keep up her weight.

Over the last decade, palliative care has become standard practice in hospitals across the country. Born out of a backlash against the highly medicalized death that had become prevalent in American hospitals, it stresses the relief of pain; thinking realistically about goals; and recognizing that, after a certain point, aggressive treatment may prevent patients from enjoying what life they had left.

Dr. Pardi had gone into the field because she thought her experience as a patient would make her a better doctor. Now she came face to face with all the ambiguities of death, and of her profession.

She remembered patients who complained to her that she did not know them well enough to recognize that they were stronger than she had thought. Now she discovered that she felt the same way about her own doctors. “I think they underestimated me,” she said in an interview last summer.

She came to question the advice she had been giving. She thought about quitting. “I just decided I have to believe in what I’m saying,” she said.

Desiree Dougherty was the overachiever of a modest family, the daughter of a sheet-metal worker and foreman and a nurse in Rockland County, about 30 miles north of New York City. She was 5-foot-1, with a wide, warm smile, a cascade of blond hair, blue eyes and a figure that turned heads. She loved the color green; Pink Floyd; and sentimental books and movies, like Richard Bach’s novel “One,” about life’s choices, and “Pretty Woman.”

She met her future husband, Robert Pardi Jr., on her first day of college at Stony Brook University. She wanted to be a doctor; he wanted to make money. “She was a hippie chick with blue eyeliner,” her husband recalled of those carefree days, “a far cry from the Ann Taylor woman she would later become.”

She began an M.D.-Ph.D. program at Mount Sinai School of Medicine in Manhattan at age 24. In 1998, she was halfway through when she decided to take a few months off to join her husband in the United Arab Emirates, where he was working as a portfolio manager.

‘It Was Bad News’

She needed a routine health screening to obtain a visa to remain in the country, and opted for a more thorough exam. At the hospital in Dubai, she later explained, the custom was for doctors to talk to the husband, even when the wife was the patient.

So her husband came home early one afternoon, and instead of taking her out for Turkish coffee and sweets, sat her down and said, “I’m afraid it was bad news.” Further tests showed she had breast cancer. She had just turned 31.

She discovered that she liked having her husband act as a buffer between her and her doctors. From then on, even when she was in the United States, her doctors were told that they should communicate only with him.

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Dr. Desiree Pardi on duty, top, and with her husband about a month before she died.

She light-heartedly called herself “the Queen of Denial,” because she did not want to know anything about her disease. Her husband gave her just enough information to enable her to make decisions, and she always chose the most aggressive treatment. When a doctor in Dubai suggested she wait a bit before getting a mastectomy, she would not hear it. “Off, I want it off!” she insisted.

After the mastectomy and months of chemotherapy, she was told the cancer was gone. Determined to try anything that might prevent a recurrence, she underwent a stem-cell transplant in 1999, before they were found to be ineffective for breast cancer. She had her other breast removed protectively, though her double-D figure had been a source of pride.

She graduated from medical school in 2002, and was invited to appear on a segment of “The Oprah Winfrey Show” about people who had overcome obstacles and graduated. She was tongue-tied, but expressed her joy by throwing her arms around a startled Ms. Winfrey.

She did her residency at NewYork-Presbyterian/Weill Cornell Medical Center, where her mentor, Dr. Mark Pecker, said she had among the highest medical board scores he had ever seen.

Then what she had been dreading happened. During her residency, her cancer returned, invading her liver, and she was treated with drugs and surgery. Even after that, she was never fully in remission.

When it came time to choose a specialty, she was drawn to oncology and psychiatry, but thought palliative care was a good compromise. During one hospitalization at NewYork-Presbyterian, she had asked for intravenous Dilaudid, a strong opioid, for “10 out of 10” pain. She was labeled a “drug seeker” by the medical staff, she said — perhaps because she was asking for the drug by name — as if she were an addict craving crack. It was a revelation that would lead her toward palliative care: that treating the pain was as important as treating the sickness.

In 2006, Weill Cornell needed a medical director for its new palliative care service, and recruited her. Her inexperience and illness gave the hiring committee pause, said Dr. Ronald D. Adelman, co-chief of geriatrics, who became her supervisor. But she won them over with her enthusiasm.

She was sparing about sharing her own survival story with her patients; she needed to maintain some boundaries to do her job. Before she walked into a patient’s room, she said, she took a deep breath and reminded herself that “it has nothing to do with me.”

Some of her patients were celebrities. Many patients were older than she was, but some were disturbingly close to her in age.

About a year ago, she was asked to speak to a young woman who refused to accept that her life was limited. Dory Hottensen, a social worker who was there, later recounted how Dr. Pardi sat down and held the woman’s hand.

“I could see that Desiree had an unusual connection with her,” Ms. Hottensen said. Dr. Pardi spoke kindly, and “told her that she was not going to get better. In fact, she was going to die very soon. What did she want for her last days? How did she want to die?”

She persuaded the woman, who had cancer, to sign a do-not-resuscitate order. But when the woman died a few days later, Dr. Pardi cried. “I again couldn’t help but wonder what was going through her mind,” the social worker said.

Chemotherapy had become a regular part of Dr. Pardi’s life, scheduled every Friday. In between, she tried to cram in her work; trips to Bash Bish Falls in Massachusetts, where a friend had a country house; playing with her Yorkie; and being “Auntie Mame,” as she put it, to her niece Jessica.

In the summer of 2008, she and her husband took Jessica to Boston for a weekend. After a day of whale-watching and visiting the ducklings in the Public Garden, Dr. Pardi woke up with a high fever. Her husband called an ambulance.

She was admitted to Massachusetts General Hospital, and it soon became clear how far her cancer had spread.

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RESPECTFULDr. Betty Lim treated Dr. Pardi. 'She was very much in control of the situation,' Dr. Lim said.Credit...Todd Heisler/The New York Times

A doctor asked if she would like a palliative care consultation. She was shocked; she interpreted the question to mean that she had been identified as someone who was dying, and she did not think of herself that way.

She had crossed to the other side of the mirror, from doctor to patient, and she no longer saw an orderly path to death.

Big Macs and Nutella

Months of constant chemotherapy followed. It kept her alive, but destroyed her appetite. Once an athletic 125 pounds, she had dropped to a sparrowlike 85. She lost her hair and wore a pixie-cut wig.

She and her husband tried to counter her weight loss. She snacked frequently. If she had an urge for a Big Mac, she would call her husband, who would rush to McDonald’s and deliver it to her office. He spent hours looking up high-calorie foods online, then made 1,100-calorie milkshakes laced with Brazil nuts, almond butter and Nutella spread. For several weeks, she received nutrition through a port in her chest while she slept.

Based on her symptoms, the standard medical advice, she said, would have been that she could no longer tolerate chemotherapy, that it “was going to become more of a burden than a help,” and that she should start to think about how she wanted to live out her remaining time.

But she did not want to stop even when she had exhausted standard chemotherapy regimens. So she turned elsewhere.

“What I realized was that if I was still being seen by an oncologist who would be affiliated with the hospital, they would have just said ‘go to hospice,’ ” she said in the interview last July. She was fortunate that she could afford treatments not fully covered by insurance, hundreds of thousands of dollars’ worth over the years.

During the interview, which took place a year after her trip to the Boston emergency room, she said she wanted to write to the doctors there to say, “Look here! I’m still here!”

She said she thought of all the times that her own patients had argued that she was underestimating their capacity to get better. “Then am I writing them off too soon?” she mused. “When they do say, ‘Well, you don’t know me. I can, blah-blah-blah,’ that’s what I said, too, in my mind. ‘You don’t know me.’ You don’t know my husband, for sure.”

She had gained back 27 pounds. “So I know it’s possible,” she said.

But she knew her own colleagues would tell her that she was not really getting better. “I’ve said it myself many times to patients,” she said.

She feared that she could no longer, in good conscience, tell patients they were going to die when she refused to accept that her own death might be near. “And so I felt like, I feel like, if I now go and tell a patient what I used to tell patients, or what they would have told me, then I’m being hypocritical.”

At one point, she tripped getting into a taxi. Instead of taking that as a sign that she should slow down, she signed up to be a New York City walking-tour guide.

In August, she and her husband walked on the beach at Coney Island. She could not swim because of the feeding line attached to the port in her chest. “She told me she wasn’t ready to die,” Mr. Pardi recalled.

But a week later, she was in the hospital, not because she was ready to die, but for pain from constipation. She chose Mount Sinai, avoiding NewYork-Presbyterian because she did not want the humiliation of being treated by her colleagues and students.

She refused to be treated by the renowned palliative care specialists at Mount Sinai whom she knew professionally, but her husband and her best friend, also a doctor, persuaded her to allow a palliative care doctor to oversee her care, with a team of gastroenterologists. She settled on a young doctor she had never met, Betty Lim.

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SUMMER 2008 Dr. Pardi with her husband and their niece Jessica in Boston. She developed a fever on the trip and went to the hospital.

After very painful enemas and a colonoscopy, the team of doctors suspected that inoperable tumors were adding to the blockage. Yet Dr. Pardi demanded more enemas.

Dr. Lim believed it was her role to listen to her patient’s wishes. “Definitely, we did things that we knew would have very small chances of working,” she said, until finally she and her colleagues decided that further treatment could perforate Dr. Pardi’s bowel. “I don’t think, at least during the time when she was conscious, she ever got to the point where she was like, O.K., this is it.”

“She said, you know, ‘I can suck it up,’ ” Dr. Lim recalled. “Anything that gave her another chance to get back to what she was doing before.”

She needed an extraordinary amount of pain medication. “It wasn’t working, because her disease burden was so great,” Dr. Lim said.

She was also being given sedatives to help her rest, but one day, she flung herself out of bed, ripping out tubes, because of a jolt of pain in her bowel.

Doctors gave Dr. Pardi stronger sedatives. As her body shut down, she began to grow confused and lose consciousness. Mr. Pardi, who stayed at her bedside with her mother, said he and his wife had talked in detail about her wishes. He had no qualms about sedating her, about taking away artificial nutrition and hydration, or about letting her kidneys shut down. Even though she desperately wanted to live, she had said that when it was her time, she did not want to be in pain.

“We had talked about how in some situations, family members want to bring you to consciousness to say goodbye, but that is not for your benefit,” he said. “God, I would have loved to say goodbye. But that was her wish. She never wanted to open her eyes and see people sad around the bed.”

She was 41 when she died in her husband’s arms on Sept. 6, after two weeks in the hospital, seven years as a doctor and nearly 11 years with breast cancer. Her eyes opened in the moment before she died, her husband said, but she seemed unable to see anything.

‘She Wasn’t Ready’

She died before many of her colleagues could say goodbye, and they grappled with her death.

Dr. Pecker, her mentor, said he would have reassured her that she was not betraying her principles by refusing to go to hospice. “I think that how you want to live, and what you choose to do is different than what you might recommend to someone else,” he said.

Her supervisor, Dr. Adelman, sympathized with her internal struggle. “Here she was, this really young, passionate woman who really had a calling,” he said. “She wasn’t ready.”

Some doctors were less understanding. “After her story came out, they would get very frustrated and say, ‘Oh, she was in denial,’ ” Dr. Lim said.

She died without ever learning the extent of her disease. Her husband said that she had tumors in both lungs, her liver, the lining of her small intestines, her colon and her bones.

Dr. Lim said doctors at Massachusetts General might have been right in offering palliative care a year earlier. “She passed away in unfortunately quite a painful scenario,” she said. “Many people would not have chosen that route.”

Yet she respected Dr. Pardi’s choice and was not ready to write off her stubbornness as denial. “She was very much in control of the situation,” Dr. Lim said.

Dr. Lim attempted, in her own mind, to reconcile Desiree Pardi the palliative care doctor who believed in a peaceful death, with Desiree Pardi the patient who wanted to keep fighting.

Dr. Lim said she believed that “somewhere deep inside, she knew this was not fixable.” But Dr. Pardi “knew exactly how much she was willing to endure,” Dr. Lim added. “And she was able to endure a lot.”

A version of this article appears in print on  , Section A, Page 1 of the New York edition with the headline: Helping Patients Face Death, She Fought to Live. Order Reprints | Today’s Paper | Subscribe

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