Streamlined access to doctors, nurses, social workers and Medicare-covered medication quickly became essential for Jean and her husband, and allowed them to continue living together on their 40-acre farm in the ‘Rural Iowa.
But as can be the case with dementia, Jean’s decline was less precipitous than expected. When she was alive after six months, her doctors re-examined her condition. It seemed to be deteriorating, so they recertified her for hospice.
After several months of additional care, Jean’s condition stabilized. She was still living with a progressive disorder, but Medicare coverage of her hospice costs was stopped because her eligibility was tied to her worsening condition.
Without her, Jean’s husband, Leonard Bishop, then 70, was alone most of the time looking after her: lifting her out of bed and placing her in front of her favorite south-facing window, helping her wash and eat. , and the management of its bedsores.
Inevitably, Jean’s dementia worsened. When Leonard found Jean unresponsive one morning in 2011, doctors again estimated he had less than six months to live. She was reinstated. This cycle of in and out of hospice happened three times over three years.
Exhausted, Jean’s husband almost didn’t enroll her the third time around, asking Drey and his siblings, “Well, if they still have to fire us, should I even do it?” Jean died almost exactly six months after her third admission.
Jean’s experience is not aberrant.
According to a recent study, Medicare palliative care regulations aren’t working as intended for many people with dementia, says Elizabeth Luth, a sociologist at Rutgers University who studies end-of-life care. According to his study of 3,837 patients with dementia, about 5% are removed from hospice when their condition seems to have stabilized.
Additionally, the number of Americans over the age of 65 with dementia is expected to more than double to 13.8 million by 2060. Many will need palliative care. “It’s worth asking the question: ‘Should we reassess?’ says Lute.
The Centers for Medicare and Medicaid Services (CMS) introduced new payment structures, pilot programs, and quality measures to address weaknesses in hospice admission criteria. However, none of their solutions changed the six-month benchmark – that would require a change in the law, according to a CMS spokesperson. With no amendment to the six-month rule in sight, hospice and palliative care workers are pushing for a different end-of-life model for people with dementia.
Congress created the Medicare Hospice Benefit in 1982 to provide dying patients with medical, social, and psychological support. To reduce the costs of the new benefit, it capped the definition of terminal illness at six months to live to balance the money spent on palliative care with the expenses saved by avoiding more expensive hospitalizations that often occur late in life. life.
For a few decades, the six-month benchmark worked. Most of the first hospitalized patients – more than 75% in 1992 – had cancer. Doctors can predict with relative accuracy when a patient with advanced cancer has less than six months to live.
Today, the average palliative care patient is very different. About half suffer from dementia, according to a study published last year. And as Jean’s family has experienced, it’s hard to predict when a dementia patient has only six months to live.
“Dementia clearly does not fit the disease trajectory of cancer patients in the 1970s,” says Joan Teno, a health services researcher and former medical director at the hospice.
Theoretically, up-and-down declines and incorrect predictions shouldn’t be a problem. Doctors can recertify living hospice patients after six months as still terminally ill, as John’s doctors did during his first hospice stay, and Medicare will continue to reimburse this additional time.
But the reality can be more complicated, says Krista Harrison, a health services researcher at the University of California, San Francisco. Hospice programs with too many patients receiving care for more than six months raise flags for Medicare and are sometimes audited accordingly – an expensive and time-consuming process. If an audit finds apparent inappropriate use of the benefit, the hospice could have to refund the money Medicare reimbursed, which can run into millions of dollars.
Sometimes people with dementia can stabilize while receiving palliative care services, as Jean did. “For people living at home, there really aren’t any other services that offer the same level of support,” says Lauren Hunt, a former nurse practitioner who now researches end-of-life care at the ‘UCSF.
So when patients sign up, they can finally get the care they needed from the beginning and their condition can improve a little or at least stabilize. This may then make them ineligible for Medicare support in the future.
Ultimately, the Medicare penalties leave clinicians and hospice organizations in what Harrison calls “an impossible moral dilemma,” with the needs of their dementia patients on one side and the six-month settlements of Medicare on the other.
“We need to update payment models, and in particular palliative care, to truly reflect this changing disease trajectory of an aging society,” Teno says. “What I prefer is a certain flexibility.”
CMS began updating its payment models in 2016 after years of warnings from Medicare’s advisory body that some hospice organizations were using the benefit for financial reasons as much as for care reasons.
The payment reform has Medicare paying more (about $200 for routine care) for the first 60 days of hospice enrollment and about $160 after that until the care s intensify again at the end of life. This pattern better aligns with the Hospice U-shaped cost model. Before that, when Medicare paid a flat rate, it was easier for financially motivated organizations to enroll patients with unpredictable declines too soon and earn extra money during their long interim periods.
Another new model began on day one of 2021. It’s one that applies to people enrolled in Medicare Advantage, the insurance that people over 65 can opt into instead of Medicare. This pilot program aims to smooth the fragmentation of palliative care, previously covered only by Medicare, for the approximately 40% of older Americans benefiting from Medicare Advantage.
Starting this year, Medicare also introduced a quality metric that tracks the number of people opting out of hospice, giving CMS another way to keep tabs on organizations with too many people opting out of hospice.
Without changes to the six-month rule, however, many end-of-life care experts say Medicare should come up with a new rule to provide palliative care for people with dementia that focuses on pain and other mental health issues. quality of life, and which is adapted to the needs of the person at the beginning of his illness. More intensive palliative care services would be added later.
“What makes sense is to have a different type of program that allows for a larger prognostic window, but would also reimburse less than hospice,” says Claire Ankuda, a palliative care physician and researcher at Mount Sinai.
Jean Bishop’s family agrees with this.
Several months into 2013, she had again qualified for hospice, her third round. A week before Christmas, the 83-year-old mother of 10 died, surrounded by her husband and children, four years after being diagnosed with dementia.
Because Jean’s disease developed slowly, it would have been helpful for her and her husband to have had consistent support from the start that morphed into palliative care, Drey says.
Instead, Jean and her family overcame steep shortcomings in an already vulnerable time. For Jean’s husband, Leonard, one of the most devastating parts was the questions that would remain unanswered between registrations without the guidance and help of hospice specialists: what the end would be like and whether he would know what to do for John – and be able to do it.
“He had to build a scenario in his head so that if something happened and it was a crisis, he knew how he would act,” says Drey.
During times when John was ineligible for hospice, he knew he would have to handle these crises alone.