Many Americans with dementia can’t get the hospice care they need

Rosalynn Carter, whose unflagging advocacy for mental health reform and on behalf of human rights, democracy, and health programs redefined the role of a president’s wife, died on November 19 at age 96.

Half a year earlier, her family had shared publicly that Rosalynn had been diagnosed with dementia. She began receiving hospice care — i.e., end-of-life comfort care for patients and caregivers — at home in Plains, Georgia, two days before her death and died there peacefully.

Her husband, former President Jimmy Carter, also opted to receive hospice care nine months ago after multiple medical problems landed him in and out of the hospital. Although his family thought he was in his last days when he made the choice, he has surpassed expectations. “Rosalynn was my equal partner in everything I ever accomplished,” he said in a statement on the day of her death.

It’s not clear why the couple were in hospice care for such different durations. But in that difference are echoes of a nationwide phenomenon: The way hospice is paid for — and the way eligibility is determined — makes it a good fit for people with terminal illnesses with predictable end-of-life courses, like cancer. But for Americans with dementia, hospice care often becomes available much later in the illness than it’s needed — or is offered and then withdrawn repeatedly over the course of a long decline in health status.

To be clear, there’s no evidence this was Rosalynn Carter’s experience. But as both Carters’ end-of-life choices have drawn attention to hospice care and the value it can bring, it’s worth looking at who it works for, and who it doesn’t. The truth is that the US’s current hospice model doesn’t serve people with dementia as well as it could. Here’s why, and what could make it better.

Hospice care focuses on symptom relief and support for dying patients and their families

Many Americans hear “hospice” and think it’s equivalent to giving up.

In fact, hospice care is a type of medical care that centers a patient’s goals — and provides support to their caregivers — when they’re nearing the end of life. And as Jimmy Carter has so transparently shown us, the shift in care can be surprisingly nourishing.

In the US, the hospice approach and the mechanism to pay for it are two different things, explained Carolyn Clevenger, a professor and nurse practitioner who leads a dementia care clinic at Emory Healthcare in Atlanta. “There’s the hospice philosophy,” she said, and “there’s the hospice benefit.” This is what makes hospice care so different from other treatment approaches in the US: It not only prioritizes comfort over cure, but it also switches the patient over to a totally different insurance plan, often called the hospice benefit. (Medicare, Medicaid, and most private insurance plans have a hospice benefit.) As a result, all the care, supplies, and equipment a hospice organization provides its patients is generally fully paid for by the benefit.

The approach focuses on providing symptom relief rather than curative treatment. It generally includes a complete package of services to care for both the physical and emotional symptoms that come with nearing the end of life, and it provides support for both the patient and the family. A person in hospice care could get specialized medical equipment, such as a hospital bed, some home care, and in-home nurse visits. They and their families also benefit from social worker services, grief counseling, and spiritual services.

Hospice care reduces what insurers pay for care at the end of life. People in hospice typically don’t receive much pricey in-hospital care, so even though their insurer pays for a lot of other services, they ultimately save money. A study published earlier this year by NORC showed that for Medicare beneficiaries who got hospice care in their last year of life, Medicare spending was $3.5 billion less — more than 3 percent lower — than it was among those who didn’t.

But those cost savings don’t come at the expense of the patient’s well-being. In the same study, patients and families in hospice reported better quality of life and pain control, less physical and emotional distress, and less prolonged grief.

Lots of patients with longer life expectancies would benefit from hospice care, but can’t get it paid for

The hospice benefit makes important services available for seriously ill patients and their families. But to qualify for it, a person needs to have a life expectancy of less than six months. Where does that leave people who need the same services, but don’t have as grave a prognosis?

For people whose serious illness causes them a lot of symptoms and their caregivers a lot of strain, the broader field of palliative care — of which hospice is sort of a subset — can be extremely helpful, even when the life expectancy is relatively long. But in the US, the difference is that while palliative care can prescribe these services, it cannot generally pay for them the way the same services are paid for when they’re provided under hospice care.

In the US, there’s a stark difference between what regular insurance plans pay for and what hospice pays for. So unless they qualify for hospice, it’s hard for many Americans to get the full benefit of a comfort-oriented approach without breaking the bank. That’s complicated by the fact that doctors, patients, and caregivers often have a difficult time approaching conversations about the end of life.

The result of linking hospice access to a six-month prognosis leads to both overuse and underuse of the benefit, said Clevenger. Overuse comes into play when providers fudge a prognosis to get badly needed services that hospice provides for a patient who might not be terminally ill. Underuse happens among terminally ill people whose end-of-life planning has been delayed.

By the time they qualify for hospice, people with dementia look very different from people with other terminal illnesses

The six-month-or-less life expectancy that the hospice benefit hinges on looks different depending on what disease a person has. Broadly, it involves a combination of medical findings, declining function, and the absence of (or a patient’s refusal of) curative treatment.

What makes things particularly challenging for people with dementia is that it often progresses at a slower pace than other life-threatening conditions. By the time they get to the point where they qualify for hospice, they are much sicker than with other conditions, and their family is under much more strain than the families of others.

That means “that person and that family’s experience is going to look very, very different from almost every other person who elects the benefit,” said Rory Farrand, vice president of palliative and advanced medicine at the National Hospice and Palliative Care Organization (NHPCO).

It’s a little easier to understand if you compare dementia with a condition like cancer. When a person with cancer runs out of curative options (like chemotherapy or radiation), health care providers can usually predict how many months they have to live within a reasonable margin of error. In many cases, people with the condition are still relatively functional at the time a provider tells them they have less than half a year to live.

It’s different for dementia, said Farrand. Dementia symptoms usually progress slowly, and there is no definitive treatment that cures it. According to the federal government’s criteria, to have a life expectancy of six months or less, people with dementia “basically have to be at a very, very, very, very advanced aspect of the illness — meaning that you are bedbound, you’re incontinent of bowel and bladder, a person has very few meaningful words,” said Farrand.

By that point, a person with dementia has likely been unable to function independently for a long time. Their caregivers — usually, their family — will have been bearing the strain of helping them dress, bathe, eat, and care for themselves for years. Additionally, the person has lost so much of their ability to make decisions that they can’t participate in their care.

The services hospice provides are often really helpful to people with dementia and their families. In the last month of their lives, people with dementia in hospice care receive what their loved ones feel is better care, and experience less sadness or anxiety, compared with those not enrolled in hospice.

So while the care patients and families receive once they’re in hospice is helpful, it comes much later than it would need to if it were to really alleviate the immense caregiving burden that often comes with dementia.

Here’s what would better serve people with dementia and their families

Congress created Medicare’s hospice benefit in 1982. Since then, medical science has gotten better at preventing or treating a variety of diseases that commonly cause death in older adults, including cancer, heart disease, and lung disease. That means people are living longer — which means more of them are getting old enough to get dementia. If current population trends persist, more than 9 million Americans will have dementia by 2030, and 12 million by 2040.

Those people and their caregivers are going to need a lot of support, said Larry Atkins, chief policy officer at the National Partnership for Healthcare and Hospice Innovation. Unless people are insured by Medicaid, or have paid for long-term care insurance, they don’t have coverage for long-term care, he said.

Because it offers such supportive, wraparound care that provides for both the patient and the family, “hospice is the ideal care model,” said Atkins. But its requirement that eligibility hinge on a six-month prognosis means it’s unavailable to many of the people who would most benefit from it — including people with dementia.

Instead of relying on prognosis, said Atkins, hospice eligibility should depend on how sick a person is, how much help they need with daily activities, and how vulnerable they are to disease or death.

One way the US could make hospice’s benefits more available to people with dementia is by providing them under an expanded and more generously covered version of palliative care services — what Ben Marcantonio, NHPCO’s CEO, calls “community-based palliative care.” In this scenario, people would be able to access all of the good things hospice provides at whatever point their disease becomes burdensome to themselves and their families.

The Community-Based Palliative Care Act, a bipartisan bill introduced earlier this year, aims to make more of the services typical of hospice available to people who are still receiving curative treatment.

It’s worth noting that the US has tried this model, and it works: Several years ago, a handful of sites in the US trialed the Medicare Care Choices model, which allowed people to get hospice services while also receiving curative treatment, and it worked great — there was still plenty of cost savings, and high family and patient satisfaction.

Meanwhile, families can do some things to maximize the likelihood that the existing hospice benefit better serves them in the event of life-threatening illness, said Farrand. “Don’t be afraid of having conversations with your loved ones about what their wishes, goals, and values are as it pertains to their illness,” or how they’d want to live their lives if they were diagnosed with a serious illness.

And if they’re in the midst of a serious illness, they should ask for a palliative care consult, said Marcantonio. People sometimes misunderstand palliative care as “giving up,” said Farrand, but both palliative care and hospice involve “aggressively ensuring that your quality of life is what you want it to be — that you can live the best you can, even while living with a serious illness,” she said.

“If anything, it’s the absolute opposite of the idea of giving up.”