DEATH WITH DIGNITY

The Nurse Coaching People Through Death by Starvation

Brittany Maynard’s death has made physician-assisted suicide a major topic of discussion. But what about terminally ill patients who live in states like New York, without a Death with Dignity law? Enter Judith Schwarz.

11.17.14 10:55 AM ET

Several years ago, a 99-year-old woman called Judith Schwarz to her Manhattan apartment. The woman had shingles and severe arthritis, and her eyesight and hearing were diminishing. She could no longer go to the orchestra; she was confined to a wheelchair. She hoped Schwarz could give her a pill to end her life.

Schwarz is a veteran nurse specializing in end-of-life care. She explained to the woman that lethal drugs are illegal in New York, but she gently suggested an alternative: The woman could stop eating and drinking until she fell into a coma.

“That’s when she shut me down,” Schwarz recalls. “She said, ‘Absolutely not—that’s not what I’m interested in.” It sounded too painful, too slow.

Two weeks later, the woman called again. Her doctor had confirmed that her eyesight would never improve. She wanted more than ever just to die.

Schwarz arranged a conference with the family. She said the process shouldn’t take more than two weeks and likely wouldn’t involve much pain. They could always call off the fast if the woman changed her mind.

So the family threw her a 100th birthday party, then she entered her swift decline. Schwarz checked in with the woman’s daughter every day during the final stretch. The woman died peacefully, at home, surrounded by relatives. “It was the kind of death that people want,” Schwarz said.

Schwarz, who is 70, estimates that she’s guided more than 100 patients through similar life-ending fasts.

Unlike the lethal drugs that recently ended Brittany Maynard’s life in Oregon, voluntary stopping of eating and drinking—VSED, as it’s often called in medical literature—is legal in every state, and strictly speaking, it doesn’t require physician assistance, medications, or legal clearance.

But to most patients, it sounds scary, and it can give rise to its own complications. This is where Schwarz comes in: to quell concerns, advise about procedures, and follow up with loved ones.

Though her work discords with the conventions of American medicine, she sees herself on the side of an older tradition. After all, she says, people have been dying this way for thousands of years. Before the technological age, sick people usually knew when their time had come, and they could turn their faces to the wall and die in their own beds. No one thought it shameful.

“And now,” Schwarz says, “they’re fighting with you. They’re saying, ‘You can’t do that. It’s suicide.’”

Having raised two children, Schwarz now lives on Manhattan’s Upper West Side with her two dogs, surrounded by artwork and pottery. Her manner is kind and irreverent but serious; it’s just as easy to imagine her barking orders at younger nurses as consoling a bereaved family.

She attended nursing school in Colorado and spent most of her career in emergency rooms and critical-care wards, moving all over the country. In the 1980s, when her kids went off to school, she began studying ethics for a bachelor’s degree in psychology and philosophy. It frustrated her to hear other students discussing death as an abstraction, subject to simple moral rules. “I kept saying, ‘Yeah, but it doesn’t work that way.’”

Still, she hewed to the conventional understanding that a nurse’s fundamental role was to help patients get well. Hastening a person’s death, by any means, still seemed scandalous.

A turning point came some 25 years ago, when her close friend Carol contracted ovarian cancer. Carol was strong-willed and energetic—she continued teaching and running marathons well into her chemotherapy. But when it became clear no treatment would vanquish the cancer, she asked Schwarz how she could speed up her death. She didn’t want to sit around waiting.

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Schwarz started researching what other patients had done. On her suggestion, Carol removed her IVs and fasted for 10 days, but it didn’t work. A plastic surgeon gave her a supposedly lethal pill that also failed. Ultimately, on Schwarz’s recommendation, Carol’s family gave her a high dose of narcotic medication, hoping it would shut down her organs. Carol’s husband later told Schwarz she had died without experiencing pain, but he skirted the details, leading Schwarz to worry it was just a comforting lie. She still wonders whether the family had to press a pillow over Carol’s face.

During this debacle, she read some medical literature on self-dehydration. She decided to pursue a Ph.D. in nursing so she could research other nurses’ experiences with the method. Preparing her dissertation, she learned that hospices and nursing homes were often skittish about helping patients with the process, but those that did go through with it usually seemed to have a comfortable and painless end.

After finishing her degree in 2002, she accepted a job with Compassion & Choices, a national organization devoted to patient rights for the terminally ill. She trained counselors all along the East Coast and worked with patients directly. Though she stepped down from the post two years ago, she still works with patients on a private basis.

Some call her as soon as they’re diagnosed, even if they have years to live. Others, she says, wait until their 84th round of chemotherapy. She first makes sure the patient’s judgment isn’t impaired by any mental illness—most commonly depression—and that the person faces a certain prospect of death. She doesn’t want to be a party to suicide, as she understands it.

“There’s no choice about dying,” she says of her patients. “These people aren’t choosing to die.”

As she tells patients about the steps of self-dehydration, she tries to avoid influencing their decisions. She won’t even give advice about when to start the fast—she tells them that if the proper time comes, they’ll know. Not all hospices will agree to facilitate self-dehydration, so Schwarz refers patients to those that will. She also advises finding a doctor and a bedside nurse who are comfortable with the procedure.

According to the medical literature, as well as Schwarz’s experience, most terminally ill patients die within 10 days of starting their fast. But they go into comas much earlier, often within the first three days. The hunger usually subsides quickly, but thirst sometimes causes serious pain. Oral care and medications can help.

Often patients decide against self-dehydration after meeting with Schwarz. It just relieves their anxiety to know they won’t be utterly helpless against their diseases. It’s a psychiatric opiate.

If it sounds individualistic—elevating personal choice above all other matters, including the concerns of family members—it isn’t in practice. Schwarz often becomes a mediator between family members, encouraging them to think of one another’s needs. For the dying patient, this can mean holding out longer than they’d prefer. For everyone else, it can mean confronting the reality of death, rather than just cycling through tests and treatments. In all her decades of nursing, she’s observed that sometimes relatives don’t reflect properly until the funeral.

In the years since Schwarz started her doctoral research, this procedure has come a long way in recognition from the medical world. The studies are multiplying, and patient resources have never been easier to find. But it remains far from mainstream.

Thaddeus Pope, a law professor at Hamline University, says that if a hospice patient chooses self-dehydration with clear presence of mind, there’s almost no way the institution could get into legal trouble. But often hospice administrators don’t realize this. “It is legal, but there’s a wide perception that it’s not,” Pope said. “There’s a prejudice against this because it’s unusual.”

Timothy Kirk, a medical ethics professor at the City University of New York, predicts that the major hospice and palliative-care organizations will issue public-policy statements on the procedure soon: particularly in light of Brittany Maynard’s death, and the increased discussion of end-of-life options. In the future, Kirk says, clinicians could learn more about the best methods for alleviating pain, and get better at predicting how long the process will take for each patient.

He noted that so far, no one has broadly challenged the procedure on ethical grounds, except within certain religious communities, such as the Catholic Church.

“This has got to be the oldest way in the human race to hasten death,” he said. “It doesn’t require knowledge of chemistry, or going to pick poison berries or anything.”

According to Schwarz’s reasoning, during the late stages of a terminal illness, food can be akin to a life-prolonging drug—especially when the patient has no appetite. Death by pills or lethal injection might be unnatural, but she believes that declining nourishment and medications is not.

Though Schwarz’s outlook is secular, she respects religious traditions that teach everyone to resist death until the end. Her role isn’t to sway patients either way.

She just wants to make it easier for them to act on their choices—particularly if they choose a speedier death.