When Sharon Levine picked up, the person on the other end was sobbing. It was the nurse practitioner at her mother’s nursing home outside of New York. She had to be calling with some sort of news, but she was too overwhelmed: Covid-19 had entered the facility and residents were dying and staff members were getting infected and they were out of coronavirus tests and they didn’t seem to have enough protective gear and everyone was just so sick — and for a moment, the roles were reversed, and it wasn’t clear who was caring for whom.
I know this is really hard, Levine said. You must be seeing so much of this. I’m really glad you called me.
Then, when the nurse practitioner finished crying, Levine gently tried to find out what was going on with her mom. She was 91. Levine knew she hadn’t been eating or drinking much for a while, and was losing weight. Her lungs were already in bad shape. Now, it turned out, her oxygen saturation was low and refusing to rise, even with air delivered through a mask. Though there weren’t the tests to confirm it, she likely had Covid. Yet the real reason for the call was a large sore spreading at the base of her back — a dark breakdown of skin that doctors call a Kennedy ulcer.
Levine knew that meant her mother was dying. Before she became the head of geriatrics at Massachusetts General Hospital, in 2019, Levine had spent three decades making house calls to frail, homebound elders — a job in which about a quarter of her patients died every year. She knew about Kennedy ulcers, how they appear, omen-like, in the last hours or days of a person’s life. She wished she could be at her mother’s bedside, but it was April 14, and the nursing home had barred visitors weeks ago, to try to contain the outbreak that was now in full swing.
Levine had hoped she could at least talk to her mom, but even that possibility was gone. Her mother couldn’t understand why her daughters were no longer visiting her in person, and what she felt most keenly was their absence. She had trouble with her phone, and when a social worker maneuvered a screen in front of her, so she could see their faces, she was so upset she refused to even look.
“The times we’ve tried to talk to her, she’s said, ‘Go away. Leave me alone. Go away. Leave me alone. I don’t want to talk to you,’” Levine said, later that week. “It is hard. It is very hard to see her this way.”
Every day, Levine was seeing a full roster of patients by video call, peering into the screen to ask how they were dealing with the new world of social isolation. How were they getting food? Were they getting the help they needed? With all the talk of intensive care in the news, she knew, people were mulling over what might happen if they themselves got sick, so she was checking in about everyone’s end-of-life wishes, confirming their files were up to date, making sure that, with the pandemic, what they wanted for their last moments hadn’t changed. She couldn’t help but think of her own mom.
“She is now actively dying, and it’s like a double helix, my professional and my personal life,” Levine said. “I’ve had to be very involved in doing with her what I do with my patients.”
The conversations are never predictable. Levine has treated nonagenarians who were still working and octogenarians who couldn’t move much, patients who were losing their words to dementia and patients who were busy writing books. Some were spry but wary of the suffering that might come if they needed mechanical help breathing; some knew firsthand the myriad diminishments of old age and wanted every last possible treatment.
“People can live alone at home, their life has become dancing on the head of a pin,” she said. “They’ve given up everything that they loved … and they make their lives work.”
Her job encompasses all facets of seniors’ well-being, from daily routines to chronic ailments to follow-ups after major surgeries. Discussion about end-of-life choices is just one part of a continuum. As a young physician, she’d watched her own father die painfully of colon cancer, at 62, on the very day he’d been moved from hospital to hospice, and she’d vowed she wouldn’t let her own patients suffer as he did.
That means asking about what’s most important to them, what they hope for and worry about, what their goal is in seeking care. If something bad happens to them — whether by coronavirus or car accident, fall or massive stroke — and they can’t speak for themselves, then what? Should EMTs attempt resuscitation? If a husband has Alzheimer’s and is cared for by his wife, who will get groceries and help with ablutions if the caregiver dies first?
She asks her patients who should make decisions for them if they can no longer make those decisions themselves. It doesn’t have to be your spouse, she says. It doesn’t have to be your kid. It just has to be someone who will actually do what you want.
That isn’t as easy as it might sound. Sometimes, family members struggle to put a dying person’s wishes above their own. You might know what mom or dad wants, but it can be hard to stomach — and harder still to enact — when confronted with such enormous, imminent loss. She remembers one patient from years ago, who was in his late 90s and sick, his heart and lungs starting to give out. He was going to die soon, and he was clear how he wanted to go. He told Levine he didn’t want to be resuscitated; he told her he didn’t even want to be taken to the hospital.
“I knew the daughters — they were health care professionals themselves — and I said, ‘OK, we’re all going to talk about this together, because you need to hear what your father has to say,” Levine recalled. “I said, ‘Tell them what you told me.’
“‘And he said, ‘I don’t want this, I don’t want that. I want to die in my home.’
“They said, ‘But Daddy!’ They kept trying to convince him to reverse what he was thinking.
“And, finally, he said to them, ‘What is it about no that you don’t understand?’”
Even now, when she is no longer making house calls, some of her appointments still include both patients and their families. It was one of the things she’d loved about having appointments in the home: Fitting her work into the everyday quirks of a person’s life, seeing the layout of each patient’s space, meeting the cousins and kids and grandkids. She could make sure they were able to move around safely, make sure they could bathe. She was a physician for the aged first — but that also meant being part mediator, part chaplain, part collector of family lore.
When children argued with their mother’s end-of-life wishes, say, Levine would tell them, “What a blessing you have, even though you want your mom to not die and to live forever. What a blessing, that she gave you the direction so this is not your decision. This is her decision. You are the luckiest kid in the world to be able to honor that wish.”
It was a blessing she had received herself. Her mother was nothing if not decisive. When her mind grabbed onto something, it didn’t let go — “like a dog with a rag,” Levine said. The U.S. Constitution was her Bible, and she always kept a copy in her pocketbook. She was so adamant about the separation of church and state that she’d make a ruckus at the post office if they put up a Christmas tree or menorah.
Her name was Anna Levine. Her father owned a kosher delicatessen, which served corned beef and pastrami and knishes and pickles to the good people of Franklin Square, N.Y., at the base of Long Island, just beyond the furthest reaches of Queens. “When I was graduated at the age of 16, girls … weren’t encouraged to go to college,” she said in 2008 at Queensborough Community College, where she was invited to give a talk for students about perseverance. “I was told, ‘Well, you won’t need it.’”
So she found a job as a bookkeeper, married her sweetheart just back from the war, had two daughters. After 18 years of marriage, she got divorced and decided she wanted a degree. She kept working full-time, and studied philosophy and comparative religion in her off hours, two courses here, three courses there, a long hiatus for breast cancer treatment, another scattering of courses. It took her 14 years.
Then, she went to law school. “In 1991, I literally dragged my three grandchildren on stage to get my juris doctor degree,” she said — and that sparked a new career spent mediating between parents caught in custody battles and advising those whose applications for unemployment benefits had been denied. She was 62.
She was just as tenacious at the nursing home, frail and past 90. She was independent, proud, didn’t like being touched. When her geriatrician daughter sat with her in Feburary 2019, as her health care proxy, to talk over her end-of-life wishes once again, she had said she wanted the doctors to do everything in their power to keep her alive. Levine knew that not everyone really understands exactly what that entails, and wanted to be sure. “Can you tell me what resuscitation means?” she asked her mother. “What’s intubation?”
To imitate her mom’s response, Levine puts on a high-pitched, New York Jewish accent, like Woody Allen, two octaves up: “She said, ‘Of course I know what that means. I know they press on my chest, I know they give me an electric shock, I know they put a tube down my throat.”
About intubation, she added, almost gleefully: “I’ve already had that, and I’m aliiiiive.”
It was true. Not long before, she’d been found bluish and unresponsive, and a medical team had coaxed her breathing back into rhythm, and here she was, still sharp-witted. So Levine started asking questions, to make sure she understood the contours of her mom’s thinking.
Did she want that same sort of resuscitation if she had cancer all over her body?
What if she had a stroke, and couldn’t engage with the world as she was now?
What if she lost her memory?
“So she wasn’t all in,” Levine said later. “A lot of my patients are like that, too.” They might want resuscitation only if they were cognitively intact, only if their illness was something they might survive. Yet there was still something she didn’t quite understand about her mom’s wishes, a knot she still needed to unpick: There were obviously still scenarios when her mom wanted aggressive treatment, but when the time came, she resisted.
“What do we do?” Levine asked as she sat by her mother’s bedside, with her husband nearby, recording the conversation. “Because when they want to take you to the hospital, you refuse.”
To her other queries, her mother had had a definite reply. To this one, her reaction was different: “Can you make the decision?”
So Levine made a decision. A few weeks before the nurse practitioner called, when her mom had already lost a lot of weight and New York’s hospitals were already overwhelmed, and after she’d talked it over with her sister, she phoned the facility’s medical director. She told him she wanted to change her mother’s advance directives, so that she wouldn’t be resuscitated under any circumstance, and wouldn’t be taken to the hospital.
She didn’t second-guess herself. Her mother had clearly stated, back in 2019, that she didn’t want to suffer, didn’t want to be mechanically sustained if she couldn’t be alert and engaged, and Levine had told her that if that seemed to be what was in store, then she’d amend the chart to say, “Do Not Resuscitate.” Now, she knew her mom was becoming frailer and frailer. If she went on a ventilator, it seemed unlikely she’d survive. She didn’t like being fussed over. Even in her nursing home, she sometimes cursed at the workers who were trying to care for her, and they were familiar — people she knew and liked.
Levine couldn’t even imagine her in the craziness of a pandemic-time hospital, the end of her life spent being repositioned and examined by nurses geared up like astronauts, with a new cast of unfamiliar masked, shielded faces with every shift. “I kept having that vision in my mind, and I thought, no, that’s not what she would have wanted,” Levine said.
Instead, she made the medical director promise that her mother would have comfort care around the clock, anxiety medication if she needed it, morphine so she wasn’t lying in pain or hungering for air. When Levine heard about the Kennedy ulcer, she knew it wouldn’t be long. In the following days, she heard nothing from the nursing home; the workers were overwhelmed. Sometimes she would call and the phone would ring 20 times. She would have to call and email and call again to get an update.
Her mother died a week later, on April 22. The official cause was Covid-19, but she had been failing for a while. She was buried in Queens, beside her grandmother, who died in the influenza pandemic of 1918. The service was accessible to Levine only by Zoom. “The gravediggers in the hazmat suits — it was surreal,” she said.
Levine kept seeing patients, the day after her mother’s death, the day after that. Only the Monday afterward did she take a day off, and realize how much she needed it. She kept thinking about her mother in her last week, unrecognizable, unable to grasp why her family wasn’t there, unwilling to talk. Go away. Leave me alone. Go away. Leave me alone.
She couldn’t believe it when she’d finally spoken to her mother’s caregivers, and they told her how open she was with them in her final days: “My mother said to the aides, ‘You know, I’m dying. You’ve been so nice to me. Will you come to my funeral? And will you make sure my daughters come, too?’”
She wished she knew what her mom had been thinking about then. “I’ll never know,” she said. She took comfort from wherever it came. Her family sat shiva online — not the usual way such grieving rituals take place, friends and family dropping by with casseroles, swapping memories of the dead, but still an outpouring of stories. They said Kaddish, a virtual rendition of the Jewish mourners’ prayer.
All she had, besides that, were glimpses. Just before her mother died, a social worker sat with her for 15 minutes, and told Levine afterward that she seemed comfortable, never short of breath. About a week before that, on the day the ulcer appeared, Levine’s sister, who lives in New York, was able to get into the nursing home — the briefest of exceptions — to see their mom in person.
“Sit down next to me, sit down next to me, Robin,” she’d said, and went to sleep for a few minutes — and then the visit was up, and her daughter had to go.