by Katy Butler
Louise curiously insisted she didn’t have pneumonia and that the fluid wasn’t bothering her, so Anne told the doctors, “Let’s not do it.” She and Lee were guided in part by conversations the family had had around the kitchen table years earlier, expressing sadness over a beloved relative who’d developed dementia and spent years curled up on a feeding tube in a nursing home. They were also helped by the fact that eight years earlier, Louise had expressed her medical preferences when she entered the PACE program. “When in the hospital, it became apparent that this was not going anywhere good,” Lee remembers. “The MOLST gave us exactly the guidance we would have wanted.”
At this point, a medical team with a different philosophy, in a less well-coordinated and more financially driven medical system might have persuaded Louise to submit to the procedure to withdraw fluid. There’d have been good reimbursement for it and the day of reckoning could have been postponed. If the family had resisted, a doctor might have made dire predictions about how she would suffer and die. Doctors could have tried ever more exotic and expensive antibiotics, and powerful drugs to get her blood pressure down. If she’d been a nursing home resident without family to protect her, she might have ended up in intensive care, and died there.
This didn’t happen.
Ten days after entering the hospital, Louise started saying she wasn’t hungry or thirsty; she refused food and water and grew less responsive. She still was on an intravenous saline drip and antibiotics, comfortable, conscious, and not in pain. Thanksgiving came, and after Lee returned from celebrating with her in-laws, a social worker from PACE convened a big family meeting around Louise’s bed. Her husband, Gene, sat in a plastic chair at its foot with his head in his hands. Lee sat on one side of her mother, her sister Anne on the other. Standing near the head of the bed were a young doctor-in-training, his physician supervisor from the hospital’s palliative care team, two social workers (one from the hospital, one from PACE), and a nurse. They were all there to discuss what doctors call “goals of care.”
Her daughter Lee doesn’t remember the words the young doctor used as he made his first fumbling attempt. His supervising doctor stepped in and gave it another try. But nothing they said registered with Gene, who just sat there with his head in his hands. “They were talking medical,” Lee remembers. “They were saying things like ‘We are concerned about her care,’ and ‘we want to keep her comfortable.’ They just danced around it. They were more uncomfortable than we were! They were saying we could move her into a nursing home, and giving a whole laundry list of options as if she was going to live another five months.
“Finally, I got exasperated. I grabbed Dad’s hands and said, ‘Let me see if I can summarize. What these kind people are too kind to say out loud is that we’re discussing what kind of death we’re going to give Mom.’ ”
Everyone exhaled. “The elephant in the room was acknowledged,” Lee said, “and everyone was free to be more specific.” The doctors asked whether the family would agree to take Louise off antibiotics and stop the intravenous saline drip keeping her hydrated. It would make her more comfortable not to be tethered, and it would allow her to die a little sooner and easier. Perhaps the family would like to think about it overnight.
Neither Gene, nor his daughters, felt pressured or even nudged. “If we’d said we wanted them to pull out all the stops [and give maximum treatment] they would have done it,” Lee said. “We were given the time and the opportunity to make our own decisions.” With tears running down his face, Louise’s husband looked up. “What’s the point?” he said. Louise he knew, had always wanted to die before he did. In fact, she’d often joked that if he dared to die first, she’d kill him. “She always wanted to go first,” Gene said. “Let’s give her that. Let’s do it now, take her off the antibiotics.”
Now Lee assumed the role of the family’s chief negotiator. If they said yes to palliative care, she asked the medical team, what were her mother’s options? Classic hospice wasn’t an option unless Louise disenrolled from PACE, and signed up for hospice, which she wouldn’t live long enough to do. In any case, her daughters didn’t think that they, as a family, could make their mother as comfortable as a skilled nursing staff could. “We wanted our job to be present with her as family and not be her care staff,” Lee remembers. “We didn’t think having her die at home would be in our father’s best interests. We couldn’t imagine that he would ever want to sleep in that bed again.”
At that point, the PACE social worker suggested “a wonderful ward on the top floor” of The Cunningham, a high-rise nursing home, and a beautifully integrated part of Loretto’s care system. Cunningham had adopted an acclaimed innovation in nursing home culture called the Eden Alternative, which eliminates industrialized, division-of-labor approaches to nursing home care, and clusters residents instead in small groups where they can build deeper relationships with a few staff members, and with each other. PACE would cover Louise’s bills there, just as they had at St. Joseph’s. And thanks to a federal grant of more than a million dollars, the top floor of Cunningham had been turned into a beautiful, long-term palliative care, nursing, and hospice unit. Lee pressed the hospital staff hard: if they agreed to let Louise leave the hospital, would the team guarantee that Louise got a bed on the top floor of Cunningham? The PACE social worker paused and said she would do her best.
From then on, things moved rapidly. The hospital’s discharge planning department sprang into action, pressing to serve the institutional goal of freeing up Louise’s bed. Only a few beds on the top floor of Cunningham were earmarked for dying patients, and at that hour none was empty. The discharge planner decided to send Louise to an open bed on another nursing floor of Cunningham, one with none of the palliative floor’s amenities. Louise could move to the top floor, the discharge planner said, as soon as a bed opened up. The ever savvy and vigilant Lee objected. She immediately called Medicare and filed an appeal against the “discharge plan.” The appeals process automatically bought Louise an extra day in the hospital, and during that time, someone died on the top floor of Cunningham. To the relief of her family, Louise was moved there by medical transport van.
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Dying can be ugly, and families and friends thirst for beauty. A good death is judged not only by the peace and comfort of the dying person, but by the memories that inhabit, or later haunt, those who survive it. Lee vividly remembers the Cunningham’s oak paneling and its expansive views of the valley. The husbands, sisters, children, and wives of the dying weren’t huddled around a vending machine drinking bad coffee and anticipating worse news. Instead they gathered around a fireplace in the living room, prepared meals in a common kitchen, and ate family-style in a dining room around a long Mission Oak refectory table. The attendants weren’t called “certified nursing assistants,” but anam cara, which means “soul friend” in Gaelic. They were encouraged to focus on nurturing their relationships with residents, not on punching out a list of tasks. The walls, the paneling, the furniture, the kitchen, everything said: you are not a patient. Those who love you are not visitors. Your dying is a human, not a medical, event. You and those you love will be cared for, and you will die in beauty.
In this institution, funded by the government, medicine was fulfilling its last forgotten duty: to attend the dying. Louise’s room was as big as a luxury hotel room, spacious enough to hold two cots, and there Lee and her sister Anne slept during the four days it took their mother to die. In the daytime, they would wheel their mother’s bed over to the window and sit on either side of her for hours, each holding one of her hands. The sisters could take a breath and look out at the clouds, hills, lakes, and valleys that surround Syracuse. They heard not the beeping of cardiac monitors, but music Louise loved—recordings of strings, flutes, and Christmas music that Anne played on a boom box that her sister Lee borrowed from staff on the thirteenth floor.
Each day, staff members brought the sisters food, so they only left their mother’s side when they
needed to step outside for some fresh air. Every two hours, attendants—the anam caras—came in to gently wash and turn Louise so she was kept clean and comfortable, and her skin didn’t break down.
Louise didn’t look beautiful. She’d lost some weight in her final year, more in the hospital, and even more since she’d stopped eating and drinking. Her skull showed through her skin. Strands of her thin gray hair were plastered to her head. A plastic oxygen tube trailed from her nostrils to soothe air hunger. She was incontinent. Her body was skeletal. She sunk into herself and said less and less. But there was a pink quilt on the bed and her hand was curled around a pillow, embroidered with a heart, brought in by her daughter Anne. The emotional and spiritual needs of the family remained at the center of things, and frantic medical attempts to ignore or forestall death had no place.
Louise had always believed in a loving God, but she’d never placed much stock in the notion of hell. “Do you think there’s a heaven?” she’d often asked her daughter Lee. “I don’t think there are fluffy clouds,” Lee had said. “But the energy is never lost.” When Louise was near death, Lee asked her mother if she was afraid of dying. “You could see her gathering all her resources and pulling herself up to consciousness. She said ‘no.’ ”
On the morning of the fourth day, Louise’s hands and feet turned a dusky blue. Her breathing grew slow and ragged. After washing her and cleaning her bed, one of Cunningham’s attendants, a man named Cesar who’d been born in Puerto Rico, asked her daughters, “Is it okay with you if I pray for your mom?” After they said yes and stepped aside briefly, Cesar anointed Louise’s head and body with fragrant oils and conducted a small service, reading to her softly from his Spanish Bible.
A few hours after Cesar finished, Lee saw that Louise’s breaths were coming farther and farther apart. She took her dying mother’s hand again and told her, as her sister had earlier, that she’d been a good Mom and it was okay to go. Lee held a phone up to Louise’s ear. Louise’s husband, Gene, who’d found it too painful to be at her side for more than a few hours a day, was at home, too far away to make it back in time. He told his wife again how much he loved her. Hearing Gene’s voice, Louise took her final breath. She was eighty-four.
Lee took out a vial of colored consecrated sand that had been given to her by Tibetan monks during a mandala ceremony at a nearby Native American cultural center. She sprinkled a few grains on her mother’s body. She took off her mother’s wedding rings and put them in her pocket.
It had been cloudy all that day. Outside the window, a hole in the clouds broke open and the sun came streaming through. Then the opening slowly filled with clouds again. This came, for the Manfreddi sisters, at exactly the right time. “We felt that was how and when our mother finally left her body,” Lee said. “That was when heaven, the universal consciousness, or whatever you believe comes next, opened to embrace her.”
Fifteen minutes later, a nurse came into the room. She listened for a heartbeat, confirmed to the sisters that their mother was dead, and accepted their report of the time of death without intrusion, drama, or bustle. “It was empowering because our word wasn’t challenged, and we weren’t berated for not calling in an “authority,” Lee remembers. “It made her death and our vigil feel like a personal and familial rite of passage, not a legal event.” The nurse let the sisters know she’d call a doctor, get the death certificate signed, and notify the funeral home. “She was gone. It was like a switch had been flipped.” They kissed their mother’s body goodbye, tucked the covers under her chin, and left to be with their father.
This is what a collaborative death can look like. Louise’s family was neither exhausted nor broke. From the day she entered the PACE program until she took her last breath, the care she got—far broader than what we usually think of as “medicine”—had been attuned to her needs, and had never ignored what she and her family valued. With one minor exception, her family had never had to fight with a doctor, a hospital, or a government agency.
The aftertaste of her death was not bitterness or bewilderment, but gratitude. “It brings tears to my eyes to think about her passing, but they are tears of feeling the loss, not about how or why she died or anything we did or didn’t do,” said her daughter Lee. “She didn’t have to suffer through a long nursing home residence or hospital stay. I am comforted that our family and our community could give her a good death, without pain, and almost in her own bed. We have no regrets and only hope we are privileged to make our own departures with as much grace. It was a perfect storm. Everything broke her way.”
Louise’s death is a model for the nation. Everyone facing the end of life should have access to this level of coordinated medical and practical, even spiritual, care. It is a travesty that our society spends so much money on futile, painful high-technology medical care near the end of life, while depriving so many of the simple supports they need to die peacefully. I wish this book could promise that you, and those you love, will pass through the difficult passages of later life as well as Louise did. But I can’t. She had the good luck to live in Syracuse, which is blessed by an excellent integrated health system, started by altruistic people with something other than profit in mind. She had an assertive, diplomatic daughter with a backbone to act as her medical advocate. And finally, she had the PACE program, which places its clients, not institutional convenience, at the heart of its mission.
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For many of the rest of us, our final years will probably be, at times, chaotic. PACE currently serves only forty thousand frail elders nationwide. It has friends in Congress, but it doesn’t have an army of highly paid lobbyists, and it’s not high enough on the national agenda to be significantly expanded. It is widely acknowledged that in most parts of the country, the conventional medical system—at least in its approach to the aging, incurably ill, and dying—is broken. You and those who love you are walking a labyrinth full of blind alleys, cracks, and broken steps. You may not be able to find a physician who makes house calls. You may not have a fierce and dedicated family member or health care advocate. You will have to navigate what the 2014 Institute of Medicine’s report on Dying in America called “a fragmented delivery system, spurred by perverse financial incentives” and a tragic “mismatch between the services patients and families need and the services they can obtain.” In such an environment, even a good-enough decline, and a good-enough death, is a triumph.
I have introduced you to some of the people, inside and outside medicine, who are improvising ways to make our last months, and theirs, more humane. They include street angels like the nurses who make house calls to the frail elderly in Santa Barbara, California, and the emergency room doctor in the Kaiser Permanente system who makes sure that the relatives of a dying person have places to sit, warm blankets, and the necessary privacy to say goodbye. They include a quiet army of physical therapists, occupational therapists, social workers, hospice nurses, and palliative care and geriatrics doctors who focus on keeping people functioning well and enjoying the best possible quality of life until it’s time for a good quality of death. They include the thousands of informal circles of people who organize the care of a dying friend, and the millions of paid caregivers who regard their poorly compensated work as a calling. It includes the nurses who wash and honor the bodies of the dead, bringing the sacred back into the hospital room with as much dignity as did the rituals of our ancestors. I hope you will find your way to such people, and when you can’t, to follow their examples and make up your own versions of what they do.
The challenge for our society is to take what are now scattered experiments, fueled mainly by philanthropies, Medicare pilot programs, and the altruism of individuals, and make them the standard of care for everyone undergoing the expected transitions of the last quarter of life. This will require a revolt from the bottom up. We deserve more, we should expect more, and the health care dollars to pay for it are already being spent, but mainly on expensive, harrowing technologies that do little l
asting good. Some version of the PACE pathway, tailored to fit individual needs, should be available to every declining, incurably ill, and dying person in America. All fragile individuals should get physician house calls. Anybody who needs medical care at home should get hospice, not only those whose diseases march fast enough to predict death within six months.
To do so will require a change in the reimbursement system.
Today, the most poorly paid people in medicine are those who meet the needs of aging and incurably ill people, and are honest about the reality of death. An oncologist who spends hours with his patients, tries to understand what matters to them, explains the limits of medicine, and encourages them to explore hospice, will get poorer reviews from his patients, and make less money, than the one who never tells the truth and administers futile and grueling, but well-reimbursed, chemotherapies until days before death. A doctor who specializes in geriatrics will make less money than an internist with less training, and both will earn hundreds of thousands of dollars less per year than a cardiac surgeon or intensive care specialist. Penny-wise and pound-foolish medical insurance systems, including Medicare, continue to be stingy about funding physical therapy, which delays disability and supports continued well-being, while lavishly reimbursing $6,000 ambulance rides and $7,000-a-day intensive care units for people who fall because they didn’t get physical therapy. That system needs to be turned upside down, so that it better rewards practitioners who take time and put patients at the center of concern, and rewards deploying technologies less well. As it stands now, the reimbursement system is practically engineered to produce expensive, overly medicalized deaths, full of unnecessary suffering. It takes enormous gumption, savvy, support—and luck, and sometimes money—to find the way to a peaceful passage.