More than six and a half million Americans are living with dementia, a number that is expected to double by 2050. The cost – emotional and financial – to families of dementia sufferers is almost incalculable. So, when one of these loved ones reaches the end-stage of dementia, with death apparently just months away, you might think that America’s Medicare system would step in to provide the hospice care that can be a virtual life-saver to caregiving families.

At least, that’s how the system is supposed to work. However, as reporter Emily Harris writes in this probing article from the Washington Post, that system fails to provide for many families, in a bureaucratic snafu that compounds the heartache and frustration. Many will need hospice care, says the article, but until the program is reformed, they may not be able to count on it.

One Family’s Journey In and Out of Hospice Care

As an illustration for her article, Harris uses the story of Jean Bishop, a 79-year-old dementia patient from rural Iowa, and her family. Jean was diagnosed with frontotemporal dementia in 2009, but as her condition gradually—and inevitably—worsened, her story of hospice reveals some valuable warnings. 

“When Jean could no longer walk, speak or feed herself a year later, doctors confirmed that she had less than six months to live,” Harris writes. “The prognosis fit Medicare’s definition of being terminally ill. That prognosis qualified her for hospice care, an interdisciplinary approach that prioritizes comfort and quality of life in a person’s final months.”

This help was sorely needed by Jean and her husband, who lived on a 40-acre farm together. The Medicare-provided hospice care made it possible for that arrangement to continue. But then, Jean unexpectedly survived her six-month prognosis.

Harris explains, “When she was alive after six months, her physicians took another look at her condition. It seemed to be deteriorating, so they recertified her for hospice.” But this wasn’t going to last.

When Patients Stabilize, Hospice Benefits Vanish

Harris explains, “After several more months of care, Jean’s condition stabilized. She was still living with a progressive disorder, but Medicare’s coverage of her hospice costs was stopped because her eligibility for it was tied to her condition worsening.” In other words, because she wasn’t getting worse, Medicare’s six-month clock ran out and benefits ceased.

This left Jean’s husband, Leonard—who was also in his mid-70s—caring for her largely alone, with all of the physical demands that entailed. But then, Jean’s dementia worsened again. And again, she was reassessed and re-enrolled in hospice care. This happened three times over three years. Leonard almost decided against enrolling her the third time, reasoning she would just be discharged again. But exactly six months into her third admission, Jean passed away.

As the Washington Post’s Harris adds chillingly, “Jean’s experience isn’t an outlier.”

Medicare’s Hospice Rules Don’t Work as Intended

According to Harris, this recent study published in the Journal of the American Geriatric Society shows that “Medicare’s hospice regulations are not working as intended for many people with dementia.”  And the numbers are worrying. In a study of nearly 4,000 hospice patients with dementia, about 5 percent were disenrolled when their condition stabilized. Based on available statistics, that represents more than 12,000 beneficiaries and their families.

“Plus,” Harris explains, “the number of Americans over 65 with dementia is projected to more than double to 13.8 million by 2060. Many will need hospice care,” which is causing experts in the field to wonder if they should re-evaluate the current system.

Harris notes, “The Centers for Medicare and Medicaid Services (CMS) has been introducing new payment structures, pilot programs and quality metrics to address weaknesses in the hospice admission criteria.” But she adds, “None of their solutions, however, have modified the six-month benchmark — that would require a change in law.”

No Way to Predict the Course of End-Stage Dementia

The historical precedent of the hospice benefit and its six-month limit was originally based on cancer patients, whose prognoses are easier to predict. “To keep costs of the new benefit down, it capped the definition of terminal illness at six months to live to balance money spent on hospice care with expenses saved from avoiding costlier hospitalizations that often occur at the end of life,” Harris explains.

But not all illnesses are so predictable, and this frustrating legal loophole has caused advocates, as well as hospice and palliative care workers, to push for a different model for dementia patients when it comes to end-of-life care.

Dementia patients make up about half of the hospice patients in the U.S. today, and predicting the end of a dementia patient’s life is very difficult.

Excess of Hospice Patients Can Trigger a Costly Audit

“Theoretically,” Harris writes, “up-and-down declines and incorrect prognoses shouldn’t be a problem. Doctors can recertify hospice patients who are alive after six months as still terminally ill, as Jean’s physicians did during her first hospice stay, and Medicare will continue to reimburse for that extra time.”

But in reality, this system tends to cause more problems than it solves. “Hospice programs with too many patients receiving care for more than six months raise some flags for Medicare, and are sometimes audited as a result — an expensive, time-intensive process. If an audit uncovers seemingly inappropriate use of the benefit, the hospice might have to repay money that Medicare reimbursed, which can run up to millions of dollars.”

This is further complicated by the fact that it’s quite common for people with dementia to stabilize in hospice because of the round-the-clock care that most of them can’t get any other way. “This can then make them ineligible for Medicare support going forward,” Harris writes.

Providers Caught in a Moral Quandary

No one wins in this tragic scenario, and doctors and hospice organizations find themselves in what Harris calls “an impossible moral quandary,” trying to balance the needs of dementia patients with Medicare’s strict regulations.

Generally speaking, dementia care advocates say that a new rule needs to be put in place specific to dementia patients, if the current six-month rule isn’t going to be adjusted. This rule would focus more on pain management and quality of life, while “more intensive hospice services would be added later,” Harris writes.

Or, as put by palliative care physician Claire Ankuda, “What makes sense is to have a different type of program that allows for a larger prognostic window, but that would also reimburse less than hospice does.” That way those with dementia – and their families – would still be eligible for a narrower range of services.

Gaps in Care are Devastating for Families

In her conclusion, Harris brings us back to Jean Bishop and her situation: “Because Jean’s disease unfolded slowly, it would have been helpful for her and her husband to have had consistent support from the start that eased into hospice care. Instead, Jean and her family weathered abrupt gaps at an already vulnerable time.”

Harris notes that, “For Jean’s husband, Leonard, one of the most devastating parts was the questions that would go unanswered between enrollments without the advice and help of hospice specialists: What the end would look like, and whether he would know what to do for Jean — and be able to do it.”

While Leonard Bishop could not have known that hundreds, thousands of others have faced what he was facing at the time between hospice enrollments, in those moments of crisis and care, he was utterly alone.

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(originally reported at www.washingtonpost.com)