For terminally ill children and their families,
pediatric hospice can be a godsend —
but the American health care system
makes it hard to keep facilities afloat.
By HELEN OUYANG MAY 15, 2019
Children dressed as superheroes skidded over the hardwood floors of a toy-filled living room. Local police officers and firefighters pretended to give chase. The birthday boy, a month shy of 1, wore a Superman T-shirt and a red cape with a yellow lightning bolt. His 3-year-old sister, in a Batgirl costume, was cheering in the open kitchen as she heaped sprinkles onto cookies straight from the oven. Parents and grandparents laid out green-and-blue-frosted slices of cake on the communal dining tables. Balloons floated overhead, adding splashes of color to the cathedral ceiling. Through skylights, the early winter sun beamed down onto the gas fireplace. A photographer circulated through the room. It was noon on a Thursday last December, and the 50 or so guests all knew that the birthday boy, Parker Graf, was going to die the next day.
His death would be the first at Crescent Cove, a new hospice home for children located on a secluded lake outside Minneapolis. His parents, Alissa and Anthony, always knew that Parker’s life would be short. Born with a malformation of his brain, he had been kept alive with a tube in his trachea attached to a breathing machine. For a while, as the chubby, green-eyed infant began to smile and learned to roll over and the family fell into everyday rhythms, there had been hope. But late in the fall of Parker’s first year, the ventilator could no longer ease his breathing. Seizures caused him to quake violently. He seemed to be in tremendous pain. “He showed us signs that his body was shutting down,” Alissa says. She and Anthony decided they would take him off the ventilator the day after his birthday party.
The Grafs had reluctantly started Parker on hospice at 7 months. “When it comes to the word ‘hospice,’ anyone who hears it is scared of it,” Anthony says. “But it means different things.” In the United States, “hospice” can designate a place where people go to die, like Crescent Cove, or it can refer to the services provided to make patients comfortable as they near the end of their lives. Unlike adults, children can be “on hospice” while they are also still receiving potentially curative treatments. Whatever form hospice takes, though, the philosophy remains the same: While the rest of the medical field focuses on giving patients more time to live, hospice tries to make the short time they have left as good as it can be.
Parker had in-home hospice services, which means a nurse trained in end-of-life care visited him for an hour three times a week. The hospice nurse routinely checked his heart rate. If it was very elevated, signaling pain, she would titrate an increase in his morphine dosage. She watched him on the ventilator, looking out for uneasy breathing, which would prompt a conversation with the doctor about the machine’s settings. She was often available on her cellphone, but when she wasn’t, another nurse or a doctor could always be called. Sometimes, a social worker would come by and sit with Alissa, talking to her about her hopes for her son. And her fears. “ ‘What could I do to help?’ she would ask me,” Alissa says. “Which was the nicest question ever.”
The hospice team became an extraordinary source of solace for the Grafs. Yet even with their help, Alissa and Anthony feared the prospect of Parker’s dying at home. “We didn’t want that memory here in our house,” Anthony says. “Especially with our daughter,” Alissa adds, referring to Parker’s sister, Hadley. But they didn’t want him to die in the hospital either, a place that felt sterile and cold to them, a place where they had received so much bad news. When Parker was roughly a week away from death, the hospice social worker told them about Crescent Cove. After Alissa heard that its “goal was to make end-of-life special,” as she describes it, she knew that was where Parker should die.
Crescent Cove does more than help children at the end of their lives. It also offers so-called respite care, which gives breaks to families with seriously ill children. These kids stay for overnights in a camplike setting, but under the 24-hour watch of specialized nurses, aides and volunteers. This is how Emily and David Gold, who anticipated Crescent Cove’s opening for five years, used the facility. Lizzie, their oldest daughter, was born with a single extra chromosome as a result of a random mutation and was not expected to survive birth. By the age of 8, Lizzie had cognitive disabilities, chronic lung disease and low muscle tone, all of which impeded her ability to breathe and eat and made her vulnerable to any number of seemingly minor childhood infections. Lizzie stayed at Crescent Cove for respite, which enabled her parents to spend time with her three siblings — hiking or riding bikes or doing other activities that they couldn’t otherwise do as a family. Respite is part of this elusive continuum of care, from diagnosis to death, that a children’s hospice like Crescent Cove seeks to provide. Chris Feudtner, a professor at the University of Pennsylvania who helped found the palliative-care team at the Children’s Hospital of Philadelphia, calls it a “largely silent, hidden and woefully unmet need.”
Emily describes this void eloquently: “After I had Lizzie, I felt like we didn’t belong anywhere. Places and people that felt familiar and welcoming were suddenly not. I was alone, exhausted, isolated and scared.” As Lizzie got older, though, her parents didn’t want her hooked up to machines. They made that clear to her doctors — but that didn’t mean they knew what should be done instead. As Emily puts it: “What is this going to look like for her? Nobody asked me what I want end-of-life to look like for her.”
A children’s hospice home like Crescent Cove is not an option for most of the roughly 43,000 children who die every year in the United States. There are many such facilities that care for terminally ill adults; there are several, at least, in every state. But while some of them may take in pediatric patients, there are only three houses in the country that have been specifically designed for children. Crescent Cove, which began accepting patients last May, is the latest to open; the other two are in San Leandro, in Northern California, and Phoenix. By some estimates, around half a million children have serious medical conditions that are expected to shorten their lives. For too many of them, death will most likely happen amid the fluorescence and thrumming machinery of an intensive-care unit.
Hospice care in the United States, envisioned and developed to meet the needs of dying adults, was first conceived as in-home services. Such support is not always available for children, and when it is, it is often inadequate. The federal government has been paying for and regulating end-of-life care for adults since the passage of the Medicare Hospice Benefit Act in 1986. Hospice organizations, thriving on Medicare’s payments, have proliferated to number more than 4,500, but only something like 10 percent of them will care for children.
That’s because, as the oft-repeated teaching phrase in pediatric medicine goes, “children are not little adults.” Childhood illnesses are many and varied, as are the ways young bodies respond to them, so accurate prognoses can be difficult to make. The saying is as true in death as it is in life. Children’s physical, emotional and spiritual needs are not the same as those of adults. Their families also require more support. What parents and siblings have to process — the decisions made, the grief that ensues — tend to be far greater and more complicated when a child is dying.
Katie Lindenfelser, a music therapist in Minnesota, saw these differences when she started working with terminally ill children in 2002 in the intensive-care unit. During her sessions there — she played her guitar and sang, and sometimes her young patients joined in, tapping drums or shaking rattles, humming and singing — parents pulled her aside to ask if there was a place where their children could go to die, other than their homes or the hospital. “I don’t know,” she told them. “I have no idea.”
In the fall of 2005, Lindenfelser, who is now 39, moved to Australia to continue her studies on using music to help very sick children cope with their illnesses. After completing her graduate work at the University of Melbourne, Lindenfelser got a job as a music therapist at Very Special Kids, a children’s hospice house that opened in Melbourne in 1985. Over the next six months, she saw how patients there could, as she says, “just be kids and also be cared for 24/7 by medical staff.” It was exactly what her patients’ families had been asking for back in the United States. Lindenfelser returned to Minneapolis and resumed her work as a music therapist at a pediatric hospital. But she couldn’t shake the idea of creating a children’s hospice home, what would come to be Crescent Cove, and so she began raising money, at first from family and friends.
One day in 2010, during rounds at the hospital, the medical team brought up the case of Maryah Tift, a 15-year-old girl who was dying from Ewing’s sarcoma, a cancer of the bone. After six years of chemotherapy, radiation and operations, Maryah and her parents were told by the oncologist that there were no more therapies to try, nothing left to do. Right there in the office, Maryah asked for a pen and paper and began to write out her “bucket list” in loopy black letters: “Sweet 16 party.” “Beach + Beverly Hills.” “Get license — drive.” Then she looked at her parents and asked specifically if she could go to die in a children’s hospice home. She had heard of hospice houses for adults and assumed that, like children’s hospitals, there were also ones for kids. Maryah was then splitting her time between her parents’ homes in the Twin Cities area, which were filled with half siblings and stepsiblings, and she was determined that they would not see her die.
Her parents, Rachel Perez and J. Zachary Allen Tift, didn’t know how to respond. There were no children’s hospice homes in Minnesota. A hospital social worker could only put them in touch with several adult facilities that might accept a teenager. But these, they were told, could cost up to $450 a day, which private insurance, even with additional Medicaid coverage, wouldn’t pay for. Maryah’s parents couldn’t afford that. Maryah didn’t want to die in the hospital, though. (And insurance wouldn’t cover that stay even if she did.)
Ultimately, Maryah moved into Our Lady of Peace, an adult hospice home in St. Paul. A brown-brick structure next to a highway, the place resembled an office building. The floors were covered with thin, tan carpeting; the walls were uniformly beige. Two patients shared each room, and the lounge for families had the feel of an office break room. Tift was struck by the quiet, a low hum of whispers and hushed tones. Maryah wanted to be able to be loud with her visitors. She played her favorite movie, “My Big Fat Greek Wedding,” over and over because it kept the atmosphere happy and carefree and because it reminded her of her own family. Ten days after moving in, she was too weak to attend her elaborately planned Sweet 16 birthday celebration. Instead, wearing a shimmery bronze dress and makeup, she hosted a small party at the hospice.
Lindenfelser never got to meet Maryah. But a month after her death, Lindenfelser’s friend, who happened to work with Maryah’s mother, connected the two women. Perez told Tift about Lindenfelser’s plans for Crescent Cove, and they agreed to meet with her. As they learned about it, Tift knew that this was what Maryah would have wanted. He immediately joined Lindenfelser’s cause and helped spread the word to other families. Over the years, nearly 80 families expressed interest in such accommodations for their own sick kids or wished it had been available to them.
Because Crescent Cove would provide medical care, it needed to be properly licensed, but none of Minnesota’s accreditations fit the needs of a children’s hospice home. The state’s existing licenses would limit admission to patients in the last six months of life — a window too narrow, given the unpredictability of pediatric illnesses — and would put strict restrictions on respite services. Medicare does allow adults occasional overnight admissions in order to relieve their caregivers, but for seriously ill children and their families, respite care is essential. Lindenfelser realized that she had to persuade the state to establish its first pediatric-hospice license. Lawyers helped her draft a bill. On an April morning in 2016, Tift stood before Minnesota’s House of Representatives and recounted Maryah’s words: “ ‘What do you mean there are no hospice homes for young people? What does this mean? Where do I go?’ ” He also spoke to the State Senate, and the bill sped through the Minnesota Legislature, easily passing that June. The new pediatric-hospice license would allow Crescent Cove to serve anyone 21 or younger who had a serious medical condition associated with a significantly reduced life expectancy.
Shortly after that, a building that was once an adult hospice came on the market for just over a million dollars. Lindenfelser hesitated. She had planned on building a customized house from the ground up; Tift and his family were helping her search for land. But then she imagined how the adult facility could be renovated for children. After Tift and a few other families toured the site and Lindenfelser saw that they, too, recognized its potential, she bought the property with money she had raised over the last decade. “Crescent Cove is not going to be for every child, every family,” Lindenfelser says. “But like adults have, this should be available to them.”
When Lindenfelser visited the first pediatric hospice home in the United States, George Mark Children’s House in San Leandro, she immediately learned how challenging it would be to duplicate. Prospective neighbors from the start often resist the idea of having children die nearby. There is no readily available way to fund such a project in the American health care system. Helping children die is a difficult subject to talk about, never mind request money for. Even children’s hospitals did not prioritize the cause at the time, preferring instead to focus on prolonging kids’ lives. Though George Mark eagerly shared how it eventually overcame these obstacles, it remained the only place of its kind for six years.
The inspiration behind George Mark came in 1994 when a psychologist named Kathy Hull attended a meeting with a patient’s father at a children’s hospital in Oakland, Calif. His very ill 14-year-old daughter wanted to leave the hospital, but because her cancer had spread to her lungs, she needed to stay where medical care was available. Otherwise she faced the prospect of a miserable death — only modern medicine could quell the unavoidable feeling of suffocation. After the meeting, Barbara Beach, the girl’s oncologist, told Hull, “If I had the money, I would build a place where families like this could be.” Hull had the money, it turned out. She had received a significant divorce settlement and had funds in her family’s small foundation. She and Beach committed themselves to starting a children’s hospice home together, though neither of them had ever seen one before.
There were no such places in the United States for Hull and Beach to visit, so they went to England, where there are currently 41 children’s hospice houses. (The first one opened in 1982.) They saw residences that felt like homes, with kids full of life in spite of their illnesses. Parents and siblings fell into similar cadence, able to embrace everyday pleasures. This is what they wanted to create.
After a decade of struggling, that’s what Hull and Beach opened: a taupe, white-trimmed rambling ranch on a hill, with gabled roofs shaded by palm trees and pepper trees. Its eight vividly colored patient rooms let the outside in through tall bay windows and individual patios. Local artists painted the walls in childhood themes: Cowboys lasso cattle in one room, while mermaids swim with starfish in another. Families can sleep on the built-in day beds or retreat into overnight suites with their own kitchenettes. There’s a special, cold “wake room” that preserves bodies for up to 72 hours, so that families can have more time to say goodbye. When I first entered the wake room, which was not in use, and saw a bassinet and sofas under gentle lighting beside the pale yellow walls, I didn’t even realize its function; I mistook this for another family suite.
Some aspects of medical facilities can’t be eliminated, but, the founders reasoned, that doesn’t mean they have to feel like a hospital. The oxygen machines and medical tubing in each patient room can be hidden behind sliding panels that blend into the walls. The nursing station is small and accessible, with a low countertop, at toddler-level, and surrounding windows and seats to make families feel comfortable sitting and talking with the nurses.
George Mark, like its English counterparts, also offers respite care. “Our respite families,” Hull says, “eventually become our end-of-life families.” Charlie Cleberg, who was 18 when I met him, was not expected to survive infancy. He will still die young, but he has been coming for respite stays for many years. He was whizzing around the house in his motorized wheelchair, shouting out familiar greetings to the nurses and volunteers, before I finally caught up with him one afternoon. We chatted in the living room while he played me his favorite rap and country songs on his iPhone. Eventually, our conversation turned to his declining health. “I want to die at George Mark,” he said. “Right here. I’m certain about that.”
“People don’t get it until they come and experience it,” Joan Fisher, George Mark’s current medical director, told me. “Parents don’t say, ‘This is where my child died.’ They say, ‘This is where my child lived.’ That’s very different.”
As word of the children’s hospice home spread, medical professionals and parents — the bereaved as well as those who had sick children — began reaching out to George Mark to ask how they could build something similar. But it turned out that George Mark couldn’t serve as a practical model. There are several reasons for this, starting with the fact that states have different regulations and licenses. “Every group has to reinvent the wheel,” Beach says, “and figure out how to go about structuring this in their own state.” George Mark is licensed as a special type of group residential home, for example, a designation unique to California; this removes the need to meet some of the strict building codes and operating regulations for medical facilities.
Finances prove to be the biggest hurdle, however. In 2010, the country’s second pediatric hospice home, the Ryan House, opened in Phoenix — but in order to be financially viable, it had to form a partnership with an adult hospice facility. Dr. Bob’s Place began accepting children the next year in Baltimore, but it closed two years later when it could no longer count on continued funding. Some 20 groups across the country are currently raising money, trying to establish their own homes.
Comparing George Mark and its American peers, real and prospective, with their equivalents in England is instructive. There, the National Health Service and local governments cover 22 percent of the costs, on average, while the rest (as is the case with George Mark) comes from philanthropic sources. But because these homes have deep roots in England, funding them there is much easier than it is in the United States. The buildings themselves have often been financed by donations, minimizing initial costs. An annual Children’s Hospice Week raises money, as do charities and celebrities like Kate Middleton, Robert Downey Jr. and Ed Sheeran.
“They’re woven into the fabric there,” Beach says. “I don’t think they have any role in the fabric of our society. Here, we think, if you try hard enough, you’ll find a cure.” What Beach characterizes as an American spirit of never-say-die is expressed as just that: a refusal to accept the inevitability of death. Doctors and patients tend to pursue every drug and procedure to the last drawn-out end. Letting a child die violates that ethos. “I really do think Americans have some notion that we’re all going to get out alive,” Hull says. “That whatever that looks like, they’ll spend money on it.”
Pediatric palliative-care physicians wholly agree with George Mark’s founders that the American health system needs to make dying less painful and traumatic for children and their families, but not everyone is enthusiastic about creating more George Marks. “If we had a lot of money for these hospice homes, as they do in England,” says Feudtner, the University of Pennsylvania professor, “then there’s no doubt they’re great.” His concern is that they’re expensive and not sustainable in the current American health care context. George Mark was forced to confront this reality in 2010 when it found itself $13 million in debt and had to temporarily shut its doors.
After it reopened six months later, financial considerations played a much more central role in its operations. Because California pays for respite stays for disabled children, even those with normal life expectancies, George Mark began to take in many more such residents. Feeling that it was no longer the children’s hospice home that she and Hull conceived — one focused on end-of-life care without considering patients’ finances — Beach left in 2013. “The mission changed somewhat from what I initially envisioned,” Beach told me. “I’m not saying that wasn’t necessary — it probably was.” Fisher, the current medical director, isn’t concerned about the shift, though. “We have to up the game with respite,” she says, “because it keeps our doors open, so we never have to turn an end-of-life patient away.”
But this restructuring hasn’t solved George Mark’s financial problems. Because the house isn’t a hospital or a nursing facility, and because it doesn’t conform to adult hospices’ standards, insurance companies have sometimes chosen not to pay for end-of-life care. Reimbursements can be inconsistent or meager. Torrie Fields, who manages palliative care at Blue Shield of California, calls it a “chicken-and-egg situation.” Until there are more children’s hospice homes, insurers can easily dismiss them as something they don’t need to cover. If more children’s hospice homes were up and running, then that model of care would be recognized and insurers could be pressured to provide reimbursement. But until then, how to build more of them?
John Irwin, who was the medical director at Dr. Bob’s Place in Baltimore before it closed, blames “the larger health care problem” for this conundrum. “Health care financing is such a mess,” he says. “Where we are now with hospice and palliative care is a symptom of the larger problem of our health care system: We have this for-profit model.”
To Irwin’s point, around two-thirds of adult hospice agencies are for-profit. Standardized federal payments like Medicare would help usher in more children’s hospice houses, but it would most likely be at the expense of the care provided. In adult facilities, strict criteria must be met first for overnight stays, showing why home care is insufficient. Then, if patients survive there longer than expected — more than a week generally raises flags — they may have to move back home to die or pay out of pocket for room and board. It’s also unclear if, under federal regulations, children could continue to hang around the open kitchen while the chef cooked or mingle with zoo animals — the sorts of allowances that make George Mark so special to its patients.
Some specialists in pediatric palliative care would rather not see health care dollars be directed toward these houses at all. According to Joanne Wolfe, the head of pediatric palliative care at Boston Children’s Hospital, the larger private rooms there can accommodate patients who need end-of-life care. Hospital stays are expensive, but this approach is far more sustainable because it uses existing infrastructure. “We need to come up with a model that’s fiscally responsible,” Wolfe says. “We should not be investing our resources in these pediatric hospice homes.”
Feudtner agrees, though he would focus on expanding home hospice care. “I love what these homes do,” he says. “Double the amount of money being spent — you can materially improve the quality of home-based services. But you could not, with double the money, build anywhere near the number of these facilities you would need.”
George Mark requires at least $2,800 a day to care for an end-of-life patient, while Medicare pays agencies less than $200 for routine home visits — up to $1,000 a day for round-the-clock home care. Even for inpatient care, it reimburses less than $760 daily. The cost comparison is crude: If hospice care was overhauled to serve children and their families, it would potentially cost more than adult services because the care delivered would most likely be more specialized and time-intensive. Still, the numbers seem to preclude the possibility that children’s hospice houses could ever align with Feudtner’s goal, which is, as he puts it, “to meet the needs of all children for end-of-life care.”
The impulse to serve the collective many over the individual few is hard to assail. And yet, for those who have seen how certain children and families desperately and urgently need and benefit from the care at George Mark, so, too, is the vision of hospice homes devoted to children. Jori Bogetz is a pediatric-palliative-care doctor at Seattle Children’s Hospital who has referred her own patients to George Mark. “I’m thankful to have a place that specializes in end-of-life care to send families with dying children,” she said. After witnessing its impact, “how could I not want George Mark to exist for that one family where it changed their life?”
After Parker’s birthday party, the Grafs retreated to their bedroom suite, where the family spent their last night together. At one point, a deer walked onto the patio and put its nose against the window. Alissa and Anthony read the children’s book “I Love You Through and Through” to Parker and Hadley. The next morning, relatives and friends returned and gathered in the Crescent Cove living room. At 10:45 a.m., in the bedroom, Parker was detached from the ventilator, his breathing tube removed. The nurses gave Parker medications to make him comfortable. Alissa held him. Thirty minutes later, his heart stopped.
“Crescent Cove was the most profound, positive experience since Parker was born,” Anthony says. “It was the best decision we made for him.” During their time there, Alissa explains, they “didn’t have to ask for anything.” The team just knew what to do for the family — and their relatives and friends. The staff looked after everyone, not just Parker. Home-cooked meals continually appeared from the kitchen. When Hadley became restless, volunteers played with her. Kate Rubischko, the social worker at Crescent Cove, checked in with each person and, Alissa says, “was so tuned in to what everybody needed.” She was particularly struck by how her own father responded: “My dad does not talk about feelings, but he talked to her for so long. It was a safe place for our emotions and how we were all feeling.” In the evenings, a massage therapist attended to Alissa and Anthony.
The staff also considered what the Grafs would need after Parker’s death. In Crescent Cove’s music studio, they made a recording of his heartbeat and set it to the lullaby “Baby Mine.” In the art room, they created a collage of Parker’s handprints and footprints and constructed a 3-D replica of his hand. To try to lessen some of the grief of returning home, Crescent Cove took in all his medical equipment. Since his death, staff members have called the Grafs several times and visited them at their home. The family can always return to Crescent Cove as they grieve; Alissa and Anthony anticipate that Hadley will need the team’s support as she gets older. “I would love to go back there, too,” Alissa says. “What we went through, it’s the best place.”
In January, Nathalia Hawley, a terminally ill 15-year-old with metastatic bone cancer, entered Crescent Cove for the first time. Though she had been reluctant initially, uncertain about what the place was, she liked it so much that she stayed for two weeks. What she found especially meaningful was doing art projects with the staff. When we spoke a few weeks before her death this April, she paused every two to three words to regain her breath. She was astounded, she said, by “the people, the way they do things, the way they treat patients.” Her mother and younger sister stayed there, too, and they binge-watched “Jane the Virgin” together. Nathalia found solace in knowing that the place had the “security of a hospital.” In her soft voice, she told me, “I could see that my mom really believed in Crescent Cove.” Nathalia had always planned on dying at home, which is where she ended up passing, but after her time at the hospice house, she contemplated going there instead if she was too uncomfortable in her last days. “It really feels like a home where you want to be in,” she said.
For the Golds, also, that has been the consoling power of the place. The first time they saw it in something close to its current state was one fall Saturday in 2017, when the renovations were nearly complete. Emily Gold slowly pushed Lizzie in her stroller in and out of each bedroom, pausing in front of the windows to look out at the lake. “To know you are walking in a place where you will say goodbye to your child — ”
But here, Emily said, her eyes wet, “I can be with her instead of taking care of her.” She swung her arm around, in a gesture meant to take in the whole house. “I found my people here,” she said. “In this place, we belong.”
It is a connection that will survive Lizzie, who died in a hospital on May 9. A viral infection led so swiftly to a collapsed lung and then death that the Golds had no opportunity to take her to the hospice home for the end. “I’m so sorry she couldn’t do it at Crescent Cove,” Emily told me moments later. Shortly after Lizzie died, however, the family drove to the facility, arriving just before her body, brought by a funeral van. Her nurse from Crescent Cove went out to get her, removed the white cloth she had been wrapped in and carried her back into the home.
Helen Ouyang is a physician, writer and assistant professor at Columbia University. She has been a finalist for the National Magazine Award. This is her first article for the magazine.