The 73-year-old woman accepted that she was nearing death; the heart, respiratory, and vascular ailments that she had survived for decades were now beyond the reach of medical interventions. She told doctors at the Mayo Clinic Health System in La Crosse, Wisconsin, that she wanted to pass her final days in hospice care at home with her boyfriend and cat.
She could not.
As explained by Jennifer Winegarden, DO, a Mayo palliative care specialist, the woman couldn’t remain home alone because morbid obesity and a foot amputation had rendered her bed-bound; someone had to help move her with an electric lift. Her boyfriend worked nights and could not get leave from his job to care for her.
The woman remained in the hospital, with frequent visits from her boyfriend. Her symptoms were managed with “minimal medications” and she passed away peacefully, Winegarden says.
It’s a heartbreaking predicament facing a growing number of patients as they approach the end of their lives. While more people are dying at home by choice than ever before, some health systems are struggling with how to compassionately serve those whose health conditions, financial constraints, or limited at-home support make it impossible to fulfill that wish.
“Most patients want to die at home, and most family members or close friends want to be the ones caring for them,” Winegarden says.
Cooper Linton, associate vice president for Duke HomeCare & Hospice at Duke Health, in North Carolina, agrees, but notes, “Home is not the ideal place for everybody.”
The dilemma is growing in part because dying at home has become culturally normative in the United States, as it was 100 years ago. In 2017, according to an analysis in The New England Journal of Medicine (NEJM), “home … surpassed the hospital as the most common place of death in the United States for the first time since the early 20th century.” The article concluded that 30.7% of deaths occurred at home that year, compared with 29.8% at hospitals. (More recent figures are not available.)
That change is due in large part to the expansion of at-home hospice care over the past several decades, which has elevated people’s expectations of where they can die in comfort, says Haider Warraich, MD, director of the Heart Failure Program at VA Boston Healthcare System and senior author of the NEJM analysis. He notes, “People have felt more empowered to ask, ‘Can I go home to die?’”
The answer depends on many factors, primarily on the level of care a person needs and whether that care can be provided by family and friends at home. The objective of hospice care is to keep a person comfortable (such as by reducing their pain) but not treat their terminal disease. Sometimes, home is not the best place after all.
Challenges at home
Doctors say terminally ill patients express three broad reasons for wishing to die at home: being in a familiar environment with loved ones; being in a place less medicinal than a health care facility; and having autonomy over such choices as what to eat and when to sleep.
“They can take their medications when they want to, not when the nurses are saying, ‘It’s 10 o’clock, you’ve got to take your medication,’” says Emily Chai, MD, professor of geriatrics and palliative medicine at the Icahn School of Medicine at Mount Sinai in New York.
But patients and their families sometimes go into home hospice care with misconceptions about the support they’ll get and the demands that will be placed on them.
“The number one misunderstanding is that [professional] hospice care is around the clock, that the nurse is going to be there 24-7,” Winegarden says. She says insurance companies and hospice service providers don’t have the financial or staff resources to provide such extensive support to patients in their homes.
Some families are well prepared, but it can be a heavy physical and emotional burden.
“Unprepared family caregivers are routinely tasked with managing distressing symptoms (including pain, agitation, and dyspnea), administering medications, and providing intimate personal care (including bathing and toileting assistance) to bedbound patients,” several physicians wrote in another NEJM article, “Where Americans Die — Is There Really ‘No Place Like Home’?” “As death nears and the realities of dying at home sink in, patient and family preferences for home death can change rapidly.”
A common reason for that change is that the patient’s medical and safety needs exceed the capacity of at-home caregivers. Even the basic task of moving the patient — turning them over in bed, getting them from a chair to the bathroom — can be more difficult than caregivers expected. One mistake, such as letting someone fall, can have severe consequences both medical (a broken hip) and emotional (guilt).
“Even with the best skilled care, anyone can fall,” Winegarden says. “But that son or daughter who let their mother fall — they feel horrible.”
Those care challenges increase as the patient’s condition deteriorates. For example: A 100-year-old patient with severe peripheral vascular disease at Mount Sinai had repeatedly made clear to medical staffers that “she prefers to die at home,” Chai recalls. “She kept telling me, ‘I’m ready. When is it going to be my time?’”
The woman was set up in hospice care at home. But an infection in her toes advanced to the point where she needed significant medical care.
“The question was, do we want to bring her into the hospital to treat the infection or continue to focus on comfort,” Chai says. “We were giving her more pain medication, but she was having side effects and needed to be closely monitored.”
The patient was brought to the hospital under hospice’s general inpatient care to manage her pain with hopes of returning her home. She died under hospice care in the hospital, Chai says.
The caregivers also need support, says Margaret Drickamer, MD, medical director of Home Hospice and Hospice Home at UNC Health, which includes the University of North Carolina School of Medicine.
“Caregivers will call up with caregiver fatigue,” Drickamer says. “You’ve got an older wife trying to take care of a husband who is very agitated all the time. That’s very hard to cope with at home” for weeks and months, especially under the stress of the loved one’s impending death.
Finances are another significant stressor. Payments from private insurance, as well as Medicare and Medicaid, are quickly exhausted as families pay for medicines, equipment, and occasional in-home assistance from professionals.
“A lot of costs get transferred to patients and families,” Winegarden says.
Given those challenges to at-home hospice care, Warraich says, health systems have to ask, “Can we provide alternatives for patients who may not have the appropriate resources to be able to make that [death at home] happen safely?”
Options beyond home
Hospice care can be provided anywhere. When home is not a viable option, that care is provided in hospitals, nursing care facilities, and stand-alone hospice homes (which typically resemble houses or nursing homes). The issue is how well those environments meet a dying person’s wishes to be in a familiar setting that feels less medicinal than a hospital.
In many health systems that provide hospice care, the patient is often housed on a regular ward. They get a different level of care that focuses on comfort: They might be taken off a ventilator, for example, or not be awakened after midnight to take pills; might be served by specially trained staff; and might have a private room with lots of space for family and friends to stay.
At Mount Sinai Hospital, Chai says, most hospice patients stay in a 14-bed unit that is set aside specifically for palliative care (which focuses on relieving pain and symptoms from serious illness and chronic conditions, such as cancer and heart failure) and that feels more homelike.
For most terminal patients, however, the hospital is a last resort.
“If they want to die at home because they want to be in a more home-like setting, how does them staying in the same place achieve that?” Warraich asks. “Hospice just becomes more of a bureaucratic transition rather than an actual transition.”
One alternative that can feel less medical is an outside clinical facility, such as a nursing home. But those facilities often have limited bed space, creating wait times that literally exceed the life expectancy of the patient. And when someone does get in, insurance doesn’t cover much of the cost.
For example: Winegarden says that the 73-year-old woman at the Mayo Clinic Health System who wanted to die at home with her boyfriend and cat could have gone to a nursing facility but would have been liable for $9,000 a month in room and board fees. Stand-alone hospice homes are similarly expensive.
Such complications are one reason that a select few health systems have established their own hospice homes away from the main campus.
At Duke Health, the Hock Family Pavilion in Durham is designed specifically for in-patient hospice care. It looks like a wide low-rise house, replete with a lawn, bushes, and white siding. Each of the 12 private rooms has a bath and patio.
“It’s staffed like a hospital but it doesn’t look like one,” Linton says. “You have nurses around the clock, you have access to a physician around the clock.”
UNC Health manages four small hospice homes in partnership with other organizations, including the State Employees’ Credit Union. One of the homes resembles a small public library. Its private rooms feature lots of sunlight and a wide door to a patio abutting the woodlands out back.
It’s common for patients to arrive after having tried hospice at home, Drickamer says. Although that transfer might feel depressing, she says patients and their caregivers are usually happy, even relieved, by the staff support and the environment.
“The wife can be a wife” instead of playing the role of nurse, she says.
Why don’t more health systems run hospice homes? Primarily because of cost, administrators say. Reimbursements from insurers, including Medicaid and Medicare, don’t nearly cover the costs of the facility and care team. Although patients are not getting medical care to cure their ailments, many of them are still high-acuity patients who require extensive care just to keep them comfortable, Linton says.
“Do we lose money on this? Yes,” Linton says.
That conundrum won’t change without federal action to increase payments for hospice care, Warraich says.
“The biggest challenge that hospice faces is that hospice care gets paid very little,” he says. “If you want hospice to be able to take sicker patients who want to die at home, we can’t do that without providing them additional support.”
Linton would like to see more hospice homes run by health systems, although he recognizes the financial commitment is significant.
“It’s the right thing to do,” he says.