At 100, my mom had dementia and needed hospice care. Getting it was nearly impossible.
When my mother prayed — when she remembered what prayer was — she asked every saint to please let her die in her sleep. In late 2016, my mom died that way, in her own bed, one week past her 101st birthday. One of my sisters and I were curled around her, asleep ourselves.
My mom’s death was perfect, and hospice helped. But her dementia made enrolling her and keeping her in hospice nearly impossible. She died during her second stint in hospice.
The year she died, I had reached out to a hospice and palliative-care agency because my mom seemed to be heading downhill fast.
A gerontologist had diagnosed my mom with late-stage dementia and encouraged us to place her in nursing care. My mom needed help with dressing and using the bathroom. She wasn’t bedridden, but bone-crunching osteoarthritis and worsening cognitive issues kept her marooned in a chair. She could feed herself once a plate of food was set in front of her. She spoke, but not a lot, unless she was in full-blown agitation.
By then, one of my sisters and I had switched caregiver roles. A stint with pneumonia at Christmas in 2014 had left my mom too weak to remain in one of my second-floor bedrooms. She moved to my sister’s, where she spent her days in a chair near her bed, moving only when my sister walked her a few steps to the bathroom. Many days, she would be alarmed if my sister left the room.
We kept our mom as active as possible, even bringing in a personal trainer. Eventually, though, we started taking her to the emergency room a lot — when she was suddenly lethargic or covered in red welts after she slid the two feet from her bed to the carpeted floor. We would call her primary-care doctor and then wait all day for a response. By then, my sister, in full-blown panic, would take her to the ER.
In early 2016, my mom grew even frailer. Hospice made sense. I read the Medicare guidelines and thought she might qualify. From the start, we hit a snag. A hospice intake nurse told us that my mom’s dementia alone was not enough to qualify her — she wasn’t bedridden, and she could speak.
The Medicare reimbursement schedule is tied to predicting when a person is within six months of death. People can linger in late-stage dementia for years. There are no scans, blood tests or other scientific ways to predict when a person with dementia will die. Making matters worse, in 2013 Medicare removed “failure to thrive” — one of the hallmarks of late-stage dementia and what some physicians call frailty — and debility as primary diagnoses for hospice entry. But people with dementia decline over years and years, and frailty is part of that decline.
“Whatever the disease, whether it’s dementia or cancer or ALS, doctors have to have some experience in seeing how end-stage progresses, and then look at that person to see what the medical conditions are, and make a decision if they think it’s within six months of life,” said Beth Kallmyer, a vice president of the Alzheimer’s Association.
People don’t access hospice until the very end of life. Fifty percent have hospice care for fewer than 18 days, and 35 percent have a length of stay of seven days or less. “That’s really frustrating,” said Judi Lund Person, a vice president at the National Hospice and Palliative Care Organization.
Hospice providers would like to do more, Lund explained: “Often after a patient’s death, the family will report in surveys about the care received that ‘they wish they had known about hospice sooner,’ because the services that a hospice can provide have great benefit for the patient and their family if they access hospice services for two months or more.”
The Medicare Care Choices Model, or MCCM, might serve as a bridge to hospice care. A pilot program, MCCM offers certain chronically ill patients 24/7 access to supportive care services provided by hospice agencies, Lund Person said. Such services might be a phone call from a hospice nurse, a chaplain or a social worker, or a home visit.
“Patients still have their regular doctors and are not enrolled in hospice, but they are seriously ill,” Lund Person said. “These may be people who qualify for hospice but may not be mentally ready to enter the program. They would be able to get supportive services and get comfortable with what’s going on in their disease process, and get help on the medical side and also help on the social side.”
To be eligible, patients must be enrolled in Medicare and meet hospice requirements but not be enrolled in hospice. The conditions covered are advanced cancers, congestive heart failure, chronic obstructive pulmonary disease and HIV/AIDS. Dementia is not covered.
MCCM, which aims to improve quality of life and reduce costs, started with 30 hospice programs in 2016. The second cohort of patients began receiving care this year from 140 programs.
A blood test taken during one of the ER visits ended up qualifying my mom for hospice with a diagnosis of congestive heart failure. Hospice was our miracle. For the next six months, weekly visits from nurses and aides gave my sister respite and helped us stay ahead of skin and bowel issues that had also brought us to ERs. A social worker and a chaplain provided emotional support. When any health issue came up, my sister called a 24/7 nursing hotline. Trips to the ER ended.
Once six months were up, though, hospice ended. Mom was not recertified because she wasn’t declining quickly enough. Her diagnosis hadn’t changed, her dementia had certainly progressed, and she was much more frail than when she was enrolled in hospice.
Leaving hospice left my sister heartbroken and exhausted. Hospice, after all, is wraparound care designed for patients and their families. Nothing in the medical system replicates hospice services. There are no alternatives.
Stephanie Wladkowski, an assistant professor of social work at Eastern Michigan University, recently started looking into “live discharges.” She learned that leaving hospice can be traumatic for caregivers. To me, that wasn’t surprising. Caregivers inhabit a world of the unknown, of second-guessing, of rarely knowing what to do. “I fear that hospice agencies have become more concerned with these diagnoses, and therefore do not enroll or admit people onto hospice if they have concerns of them remaining enrolled,” Wladkowski said.
Enrolling patients in hospice, dis-enrolling them and perhaps re-enrolling them once death is obviously imminent does require burdensome documentation, but hospice means so much more than a bulging two-ring binder. “That is psychologically crazy, and financially crazy for families, and it’s a bigger battle than just a policy battle,” said Debbie Parker-Oliver, a professor of family medicine at the University of Missouri School of Medicine.
Hospice enrollment has perhaps the most stringent regulations for Medicare reimbursement in the health-care industry, said Timothy Ihrig, a palliative-care physician in Des Moines and the chief medical officer at Crossroads Hospice, the agency we used.
The change was necessary and recommended by physicians and hospice nurses, explained Zinnia Harrison, a vice president at the National Hospice and Palliative Care Organization. Harrison served at the Centers for Medicare and Medicaid Services (CMS) as division director in home health and hospice for payment policy. “We wanted a better picture of what those diagnoses would look like in the population, because frailty is most often a symptom of something else,” she said.
Ihrig would rather that CMS develop a mechanism for penalizing people who don’t follow the rules than discharge people who can’t care for themselves. “There needs to be a more realistic conversation about admission criteria for dementia,” said Ihrig, who also helped care for his mom.
Even though Ihrig’s mom, like mine, had late-stage dementia, she qualified for hospice because of her chronic obstructive pulmonary disease. Here’s the kicker: Ihrig’s mom was dis-enrolled after 120 days for not declining quickly enough. Ihrig fought to keep her in hospice but lost.
“I tried to make the case, knowing exactly that this is a progressive, irreversible, terminal disease, and she’s not going to get better,” Ihrig recalled. “This was quite an emotional journey for me even though that’s the space I’ve worked in my entire career.” Three weeks later, his mom died, again enrolled in hospice.
My family’s experience mirrored that of Ihrig’s. When my mom was visiting my house about five weeks after her discharge, she woke one morning and shook her head at toast and sweet tea. She wouldn’t move from the chair beside her bed. When my husband tried to lift her, she went limp. I called the hospice agency, and she was re-enrolled. She died two weeks later.
We were, and still are, at peace, because my mom died so beautifully. Not everyone is so lucky.
Erdmann is a freelance health and science writer in Wentzville, Mo. This article was written with the support of a journalism fellowship from New America Media, the Gerontological Society of America and the John A. Hartford Foundation.