Taking too long to die: Some ‘terminal’ patients can lose hospice benefits

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John Tagtmeir lies dying in a corner of the living room as his daughter, Krissy, finally gives in to her long-simmering rage.

She’s on the phone with a representative of Hope Healthcare, one of Southwest Florida’s leading end-of-life care providers. For the last month, Hope has wanted its breathing machine back – plus the hospital bed, the walker, the wheelchair and everything else it provided the family to care for Johmen in his home.

John has lived five months longer than anyone initially thought possible, and his hospice benefits have been canceled.

“You’ll get the equipment back when he goes, ’cause you can’t get blood from a turnip!” She’s shouting now. “You people need to be ashamed of yourselves! I’m a single parent; I’m the one who’s been taking care of him. I work a 60-hour job. My mom has dementia!”

John, 67, has end-stage chronic obstructive pulmonary disease and only a 10th of his lung capacity. For him, hospice care has meant weekly visits from a nurse, equipment to aid his breathing and allow him to move around, and powerful painkillers to help ease his eventual passing.

That may now be going away, something the Tagtmeirs didn’t even think was possible. They have no plans in place for other types of care.

“I haven’t had time to look into it,” Krissy says. “I didn’t think this was going to happen.”

Their situation exposes some uncomfortable, and largely unknown, truths about the limits of Medicare coverage, the veracity of terminal diagnoses and the reliability of hospice care for people in their final stages of life.

Hope Healthcare determined that John does not qualify for a continuation of hospice benefits, something Medicare allows if a patient continues worsening.

Samira Beckwith, the center’s CEO, would not comment on the specifics of Tagtmeir’s case, citing medical privacy. But she said Hope must follow government guidelines on who qualifies for continued hospice care.

“We’re never saying to somebody that the person isn’t very sick,” Beckwith said. “What we’re saying is that they don’t meet the criteria and we’re not permitted to keep them on hospice benefits. And sometimes that’s hard for some people to hear.”

The issue is of particular importance for Florida, which has the nation’s second largest population of hospice patients, behind California. And here in the state’s southwest region, which includes Lee, Collier and Charlotte counties, the population is one of its demographically oldest.

Paul Ledford, who leads the Florida Hospice & Palliative Care Association, said hospice centers’ hands are tied in such cases. Bending the rules for any family could cause Medicare to rescind payments, he said.

“The harsh reality is, the payer makes the rules,” Ledford said. “I can tell you that hospices – these community-based hospices with local boards of director – if they could, they’d serve everybody. They wouldn’t turn anybody away. But they can’t do that, by law.”

While most U.S. hospice patients die within two or three weeks of getting a hospice referral, about one in six is discharged from care alive.

Generally speaking, Medicare allows for discharges if patients are no longer considered “terminal” – meaning they likely have more than six months to live – or they move out of the area the hospice serves.

Nearly 40 percent of the time, patients simply get better or otherwise elect to give up hospice care for other reasons. A decade ago, the late humor columnist Art Buchwald famously outlived a particularly pessimistic prognosis and was even able to drop out of hospice care altogether.

But just over half of the time, a hospice discharge means a patient remains ill but isn’t declining fast enough to qualify for continued Medicare coverage. As in the case of John Tagtmeir, these patients may linger, ailing and not improving, but now have to do without the level of medical supervision to which they had become accustomed.

Many lose benefits only to qualify for them again weeks or months later. Even so, unprepared families can find themselves in a bind while they wait for that possible resumption of coverage.

Krissy Tagtmeir, 43, often works 12-hour days as a deli supervisor for Publix and is now out of vacation days. Her 18-year-old son also works. Her mother and John’s daytime caregiver, Kathleen, 66, suffered a brain stem injury years ago and has a hard time remembering things.

“We can’t leave him by himself. We can’t,” Krissy says. “I’m checking all the time to make sure he’s still breathing. I do that a lot.”

The Medicare benefit comes in two 90-day periods, followed by an unlimited number of 60-day increments if doctors confirm that such patients are continuing to decline. Medicare pays between $146 and nearly $1,000 a day for hospice care, depending on the level of service provided.

So things can get expensive pretty quickly.

The Medicare Payment Advisory Commission, a federal advisory group, reported last year to Congress that more than half of the $15.1 billion in Medicare spending on hospice went toward patients exceeding 180 days of such care.

The advisory commission speculated that part of that may be unscrupulous providers seeking out such longer-lived patients, and not necessarily terminal ones, as part of their “revenue-generation strategies.”

Medicare has tried to crack down on potential abuses, which have also led to multimillion-dollar fraud settlements.

But the reality is, disease progression can be unpredictable.

Patients with COPD averaged 121 days of hospice care compared to cancer patients, who averaged 53 days, according to government data. But those are only averages. Specific cases can vary wildly.

“Sometimes they rebound and plateau and stabilize for a little while. It just really depends,” said Jaysen Roa, president and CEO of  Avow, a hospice care provider in Collier County. “So, a cancer trajectory is completely different than, let’s say, an Alzheimer’s/dementia trajectory, which is different than end-stage liver (disease).”

Krissy Tagtmeir says the family only got two days’ notice that her father no longer qualified for hospice care. She said the hospice did not work out a transition plan with her, and there was no time to make other arrangements.

It’s unclear whether it happened through a paperwork snafu, a miscommunication, or simply bad hospice practice. The family said no one indicated that John Tagtmeir was getting better or that his health had stopped declining.

Beckwith, the CEO of Hope Healthcare, said her hospice staff tries to give families plenty of notice. But, again citing medical privacy rules, she would not say if this case had been reviewed internally or if Hope had followed its own policies with this family.

Kathleen Long, a Chicago-area based registered nurse and quality assurance consultant for hospice companies, said some cases are a hard call, even for seasoned end-of-life centers. And Medicare only requires that hospice gives a 48-hour notice before a person is discharged from hospice care.

“Nobody knows when someone is in the last six months of life. It’s kind of a guess. And end stage COPD is real hard to predict.” Long said. “Most hospices try to do discharge planning sooner than that.”

Long said some families simply do not accept that the loved one is no longer eligible for hospice care.

“It’s a sad situation that there wasn’t better communication,” with Tagtmeir, Long said. “But she may not have been open to hearing what they said.”

Poor communication aside, the Tagtmeirs have another problem: Hospice doctors prescribed John powerful painkillers, including liquid morphine and fentanyl, for the duration of his care.

The drugs come with a high risk of overdose if administered improperly. Additionally, patients who are ejected from hospice care may lose easy access to these opioids, and as a result, are at risk of painful withdrawal.

John now has a few drops of morphine left, and the fentanyl is long gone.

Hospice had prescribed four doses a day of opioids to ease his pain. Krissy has rationed it out to once a day.

She’s asked the VA clinic in Cape Coral for help – John is a Vietnam War veteran – but ran into bureaucratic delays. The pain got so bad one night that they had to take him to the Gulf Coast Medical Center emergency room to get some relief.

Tagtmeir said Hope Healthcare recommended she take John to a pain clinic. But he’s largely bedridden, making such trips outside the home impossible, she said.

“Even drug addicts get methadone. You have someone who fought for the country that they just say, ‘Whatever!'” she says. “He’s going to get sick.”

John is now going in his second month without hospice care. He sleeps through most days and often needs prodding to even drink a nutritional shake.

The 5’8″ man is down to about 135 pounds, 30 pounds lighter than normal, his family says. He can walk, but he generally needs assistance moving more than a few feet. He cannot bathe himself unaided.

One recent night, he fell on his way to the bathroom and landed in the cat’s litter box while everyone was asleep. He didn’t break any bones, but the fall left him bruised and in more pain.

Krissy worries about things like this all the time. Her mother, who was diagnosed with dementia several years ago, is frequently the only one home to watch him.

“I don’t want to see him die,” Krissy says.

John stirs from his slumber as Krissy speaks: “But I am dying. So…”

“The man upstairs just don’t want you yet!” Krissy shoots back.

Kathleen, John’s wife and Krissy’s mother, chimes in: “My mom and dad are waiting for you.” John grumbles, and Kathleen laughs. “He don’t want to go now,” she says.

This is one of John’s good days. He’s able to sit up, take a few sips from a can of Ensure and chat briefly with visitors.

What does he think about all this?

“They said three months, and then all of the sudden it was six months. Why the hell did they cut me off?” he says. “I didn’t do nothing wrong.”

“It wasn’t you dad,” Krissy tells him.

Three weeks have passed, and Krissy remains frustrated.

Hope Healthcare has agreed to provide palliative care – essentially symptom-relief treatment – by way of monthly visits. Doctors have written John a prescription for oxycodone, a powerful opioid, to help with the pain and prevent him from going into withdrawal.

Hospice workers have also suggested that John make another visit to his pulmonologist, a doctor who specializes in breathing-related medical conditions, to see if he can help improve his condition, according to the family.

Krissy thinks it’s a waste of time since physicians have already told the family they can do nothing more for John.

She says the hospice center has been more cooperative after her weeks of complaints and a reporter’s inquiry into the case. But she resents the idea that she somehow didn’t hear early warnings that her father would lose benefits.

“Come on, like I wasn’t paying attention,” she says.

John is still using the hospital bed that hospice provided him, and the family has not yet returned the other devices. They are still getting calls to return them.

As has been the case for months, he sleeps most of the time and is barely eating, his family says. On this day, like most days, the only sounds he makes are labored breaths and the occasional deep cough.

Krissy motions to him. “This isn’t how we should treat our elderly,” she says.

She soon gathers her things and heads out to work, leaving her mother to keep an eye on her father. It will be another long day.

By the numbers:

• 18.2: The percentage of U.S. hospice patients who are discharged from end-of-life care alive, either because of improved conditions or lost benefits
• 24.1: The percentage of those discharged hospice patients who were hospitalized within 30 days of those discharges.
• $15.1 billion: Total Medicare spending for hospice care in 2014
• $8.8 billion: Medicare spending for patients receiving at least 180 days of hospice care

Sources: The Medicare Payment Advisory Commission’s 2016 report to Congress and The Journal of Palliative Medicine

Kathleen Long, an Illinois-based registered nurse and quality assurance consultant for hospices said there are plenty of misconceptions about hospice care. Many people think of hospice as a place, but most hospice care is delivered where a patient lives.

There are four levels, each with a set Medicare reimbursement rate.

Level One – Routine Home care. The care is provided in whatever setting the person lives – a home, nursing home or assisted living center.

Level Two – Continuous Care. This name is a little bit misleading,” Long said, because care is provided eight out of 24 hours. It is used for patients who need to be continuously monitored for short period for a condition such as terminal restlessness or a change in pain medication.

Level Three – Respite Care. Patient care is provided when a family needs a break. They may want to go on vacation for a few days or to a wedding, Long said. The patient can go to a nursing home or other inpatient facility or a nurse will stay in the home for up to five days.

Level Four – Inpatient care. Inpatient care can be provided in a hospice home, nursing home or hospital. Patients must have symptoms that can’t be controlled or pain that can’t be managed. This is highest reimbursement rate Medicare pays for hospice care and it’s time-limited, Long said, usually no more than seven days.

Follow these reporters on Twitter: @FrankGluck and @TellMel