The stigma against opioids is affecting even the people that were explicitly excluded from the CDC Opioid Guidelines. Even people who are dying cannot get appropriate access to opioid medications to ease their agony.
As her husband lay moaning in pain from the cancer riddling his body, Patricia Martin searched frantically through his medical bag, looking for a syringe.
She had already called the hospice twice, demanding liquid methadone to ease the agony of Dr. Robert E. Martin, 66. A family practice physician known to everyone as “Dr. Bob,” he had served the small, remote community in Wasilla, Alaska, for more than 30 years.
But the doctor in charge at Mat-Su Regional Home Health and Hospice wasn’t responding. Staff said he was on vacation, then that he was asleep. Martin had waited four days to get pain pills delivered, but her husband could no longer swallow them. Now, they said, she should just crush the drugs herself, mix them with water and squirt the mixture into his mouth. That’s why she needed the syringe
“I thought if I had hospice, I would get the support I needed. They basically said they would provide 24/7 support,” she said, still shaking her head in disbelief, three years later. “It was a nightmare.”
Bob Martin had the misfortune to require care during a long holiday weekend, when hospices are often too short-staffed to fulfill written commitments to families. The consequences, as documented through a review of official records and interviews, were dire.
It took six days and three more calls before he received the liquid methadone he needed.
Hospice denied Patricia Martin’s requests for a catheter, and she and her son had to cut away his urine-soaked clothing and bedding, trying not to cause him additional pain.
The supervising hospice doctor never responded.
A nurse who was supposed to visit didn’t show up for hours, saying she was called for jury duty.
Bob Martin died just after midnight on Jan. 4, 2014. “It was just sheer chaos,” Patricia Martin said. “It makes me wonder about other people in this situation. What happens to them?”
The Martins had entrusted the ailing doctor’s final days to one of the nation’s 4,000-plus hospice agencies, which pledge to be on call around the clock to tend to a dying person’s physical, emotional and spiritual needs.It’s a thriving business that served about 1.4 million Medicare patients in the U.S. in 2015, including over a third of Americans who died that year, according to industry and government figure
Yet as the industry has grown, the hospice care people expect — and sign up for — sometimes disappears when they need it most. Families across the country, from Appalachia to Alaska, have called for help in times of crisis and been met with delays, no-shows and unanswered calls, a Kaiser Health News investigation published in cooperation with TIME shows.
The investigation analyzed 20,000 government inspection records,revealing thatmissed visits and neglect are common for patients dying at home.Families or caregivers have filed over 3,200 complaints with state officials in the past five years. Those complaints led government inspectors to find problems in 759 hospices, with more than half cited for missing visits or other services they had promised to provide at the end of life.
Only in rare cases were hospices punished for providing poor care, the investigation showed.
Hospice is available through Medicare to critically ill patients expected to die within six months who agree to forego curative treatment.
Agencies receive nearly $16 billion a year in federal Medicare dollars to send nurses, social workers and aides to care for patients wherever they live.
While the vast majority of hospice is covered by Medicare, some is paid for by private insurance, Medicaid and the U.S. Department of Veterans Affairs.
To get paid a daily fee by Medicare, hospice agencies face many requirements.
They must lay out a plan of care for each patient, ensuring they’ll treat all symptoms of the person’s terminal illness. And they’re required to be on call 24/7 to keep patients comfortable, but because each patient is different, there’s no mandate spelling out how often staff must show up at the home, except for a bimonthly supervisory visit.
Hospices must stipulate in each patient’s care plan what services will be provided, when, and by whom, and update that plan every 15 days.
Hospices are licensed by state health agencies, and subject to oversight by federal Medicare officials and private accreditation groups.
In St. Stephen, Minn., Leo D. Fuerstenberg, 63, a retired U.S. Veterans Affairs counselor, died panicked and gasping for air on Feb. 22, 2016, with no pain medication, according to his wife. Laure Fuerstenberg, 58, said a shipment sent from Heartland Home Health Care and Hospice included an oxygen tank, a box of eye drops and nose drops, but no painkillers.
Later, state investigators determined that Heartland’s on-duty hospice nurse had muted her phone, missing 16 calls for help. Hospice officials did not respond to repeated interview requests.
Officials with the National Hospice and Palliative Care Organization (NHPCO), an industry trade group, said that such accounts are inexcusable — but rare.
But a recent national survey of families of hospice patients suggests the problem is widespread: 1 in 5 respondents said their hospice agency did not always show up when they needed help, according to the Consumer Assessment of Healthcare Providers and Systems (CAHPS) Hospice Survey, designed by the Centers for Medicare & Medicaid Services.
Most families are happy with their experience, according to the CAHPS survey. In data collected from 2015 to 2016 from 2,128 hospices, 80% of respondents rated hospice a 9 or 10 out of 10.
I suppose this 80% figure must then represent everyone else except those 1 in 5 that said hospice didn’t always show up when they needed help.
To get Medicare payments, hospices are required to offer four levels of care:
- routine care, which is by far the most common;
- respite care to give family caregivers a break for short time periods; and
- two levels of so-called “crisis care,” continuous care and
- general inpatient care, when patients suffer acutely.
But 21% of hospices, which together served over 84,000 patients, failed to provide either form of crisis care in 2015, according to CMS.
8.1% of hospices, didn’t provide a single skilled visit — from a nurse, doctor, social worker or therapist — to any patients who were receiving routine home care, the most common level of care, in the last two days of life in 2014.
Regardless of how often they visit, hospices collect the same flat daily rate from Medicare for each patient receiving routine care: $191 for the first 60 days, then $150 thereafter, with geographic adjustments as well as extra payments in a patient’s last week of life
Overall, 12.3% of patients on routine home care received no skilled visits in the last two days of life, the study found.
Patients who died on a Sunday had the worst luck: they were more than three times less likely to have a skilled visit than those who died on a Tuesday. Teno said that gives her a strong suspicion that missed visits stem from chronic understaffing, since hospices often have fewer staff on weekends.
Unlike nursing homes, hospices don’t face inspection every year to maintain certification.Based on available funding, CMS has instead set fluctuating annual targets for state hospice inspections. In 2014, CMS tightened the rules, requiring states to increase the frequency to once every three years by 2018.
Often, promising to do better is the only requirement hospices face, even when regulators uncover problems.
One problem, she said, is there is no punishment short of termination — barring the hospice from receiving payment from Medicare— which is disruptive for dying patients who lose service.
CMS records show termination is rare. Through routine inspections as well as those prompted by complaints, CMS identified deficiencies in more than half of 4,453 hospices from Jan. 1, 2012 to Feb. 1, 2017.During that same time period, only 17 hospices were terminated, according to CMS.
there’s little information available for families trying to pick a hospice that will show up when it counts. Tucci, of the Hospice Foundation of America, suggests that families of ill or frail relatives consider hospice options before a crisis occurs.
The agency recommends 16 questions families should ask before choosing a hospice.
This story was produced in collaboration with Kaiser Health News, an editorially independent nonprofit news service covering health policy and politics
Original article: Hospices Leaving Patients and Families Facing Death Alone