A young mother with two children is dying of leukemia. The doctors say there is no way to cure the disease, but she wants to live as long as possible.
Transfusions — hundreds of dollars per treatment — might give her a little more time.
But the woman is in hospice, the kind of care meant to shepherd the critically ill into a pain free death, not prolong life.
What to do?
Dr. Charles Lewis, who has treated thousands of dying patients over the past 20 years as the former Medical Director of the San Diego Hospice Inpatient Center, remembers this case. And the discussion at the center’s ethics committee.
“If we don’t do any more transfusions she’ll die a little sooner,” Lewis recalls of the meeting.
“Should we be giving these transfusions, we’re keeping her alive.”
Some on the committee suggested hospice stop the transfusions.
“Which one of you is going to go in and tell her?” Lewis asked. “Complete silence.”
The woman lived another two weeks. She received the transfusions until she died.
Cases like this one come up repeatedly in end-of-life treatments and they frame important questions: How much care should hospices provide and at what cost? Should dying patients have to choose between hospice care and expensive treatments that could make them feel better and even prolong life?
Doctors who trained at San Diego Hospice say that provider routinely gave dying patients so-called “curative” treatments – AND hospice care. That level of care is expensive. It’s not clear how the hospice was able to pay for it or whether providing those treatments contributed to its financial demise.
A former physician, who didn’t want to be named for fear of being prosecuted for Medicare fraud, told the KPBS and inewsource that having many patients in care – about 1000 a day collecting a per diem – allowed San Diego hospice to “do more for those who needed more.”
Whether San Diego Hospice offered too much to too many is the subject of a Medicare audit. Documents filed in bankruptcy court indicate the federal government plans on asking San Diego Hospice to pay back millions in patient reimbursements.
“Cost Never Came Up”
San Diego Hospice, the state’s largest provider and a national leader in hospice care, regularly faced excruciating decisions. Some doctors spoke with us on the record, others wanted their names withheld because of a pending federal investigation.
They all told similar stories, San Diego Hospice never considered cost when it provided treatment that could alleviate pain, give patients a few extra days with their families, or provide them the strength to make it to a special event.
Sometimes they had to decide whether to allow a cancer patient to die a paraplegic, or pay for radiation treatment to shrink a spinal tumor just enough to alleviate pain. Even with the radiation, the patient is still dying, but it “prevented a complication that could be miserable,” a long-time San Diego Hospice physician says.
Lewis says the issue of cost “never came up” when hospice doctors made these decisions.
“Our covenant was with that patient,” and ensuring they didn’t die in pain, he says.
“She Needed Both”
Dr. Bill Mitchell trained as a palliative care specialist at San Diego Hospice between 2005 and 2006, and is also an oncologist at Moore’s Cancer Center at UCSD.
Palliative medicine aims to treat all symptoms that accompany a serious illness – pain, anxiety, even spiritual needs.
While training at San Diego Hospice, Mitchell routinely treated dying patients with “blood transfusions, chemotherapy, radiation, and a whole host of other things.”
And as a practicing oncologist, he referred patients to San Diego Hospice.
He recalls one patient with metastatic lung cancer:
“She was so ill that she could barely speak, completely bed bound,” Mitchell says.
Mitchell’s patient was in hospice care when he discovered an expensive drug could help control her cancer. “And we’re left with this decision, what to do?”
The drug cost $4,000 a month. Mitchell says San Diego Hospice agreed to pay for it. The woman lived for eight months.
“Those were eight good months,” Mitchell says. “She needed both (the drug and hospice). Desperately.”
Medicare pays for hospice care at a daily rate for people who have six months or less to live. It amounts to about $4500 a month. Most of that is spent on weekly visits from nurses, home health aids, medical equipment like oxygen machines, and prescription pain medication.
Hospices legally have the option to give patients chemotherapy, radiation treatment, even blood transfusions if they’re used to palliate symptoms – make people feel better.
But these treatments are so expensive they could run a hospice out of business. So it’s a Hobson’s choice: pay for the treatment and risk the business or continue to operate.
Treatment Means Hope
Dr. Eric Roeland, an oncologist who also trained in palliative care at San Diego Hospice, is still troubled by the way his patient with colon cancer died earlier this year.
The patient was a husband and a father – he had a son and a daughter – and he was willing to try any medical intervention that would give him more time.
For a couple of years it worked. He enrolled in clinical trials and each small success gave him hope medicine could save him.
But last July, Roeland recommended hospice care.
“He was unable to eat, unable to drink, basically had a hole on his side which he used to defecate,” Roeland says.
“He was losing weight, he had incredible pain….At a certain point we realized we could not offer him any more chemotherapy and we really needed to focus on quality of life.”
In September, the patient began an expensive treatment called total peripheral nutrition, or intravenous feeding, while he was receiving care from San Diego Hospice.
The treatment had many risks, but it also meant hope.
“I asked the patient what are you hoping to get from this nutrition? And he said, you know I really enjoy going to see my son play soccer,” Roeland remembers, and agreed to prescribe the treatment from a time-limited trial.
But last December, with a Medicare audit on its heels, San Diego Hospice began discharging patients and changing its rules.
It would no longer pay for this expensive treatment. The patient left hospice, and even when he eventually stopped the peripheral nutrition, refused to go back because he no longer trusted the organization. His wife became his 24-hour caregiver, together they suffered through complications from pain medication, she unable to help him while he lay seizing on the floor, Roeland on the other end of the phone trying to help.
“I felt so helpless.”
The Affordable Care Act was supposed to experiment with changing the hospice benefit so the government would pay for both “curative” treatments and hospice care. The legal framework is in place to allow 15 hospices across the country to do so – but the money for the project has yet to be approved.
The National Hospice and Palliative Care organization says other hospices across the country offer radiation and chemotherapy. But not many according to the research. One study in the Journal of Clinical Oncology found that only 3 percent of hospice patients received radiation treatment because of cost.
Complicating the debate – the proliferation of for-profit hospices. the number of for profits have more than doubled in the last decade.
A government report raised questions about the number of for-profits and whether they have the incentive to enroll more long-term care patients who generate more income rather than shorter-stay patients who can be costly.
However, there appears to be little research to determine whether the profit status of a hospice influences level of care. Both for-profit and non-profit hospices maybe just as likely to not offer expensive treatments, but for different reasons: nonprofits won’t stay in business and for-profits won’t make enough money.
Vitas Innovative Hospice Care, the largest for-profit hospice chain in the California, says it provides chemotherapy and radiation to ease pain “when circumstances warrant.”
But it doesn’t track how how often these treatments are offered “because it is not a useful benchmark that guides the care we provide,” Kal Mistry, Vitas senior vice president and chief administrative officer said in an email statement.
Don Taylor, one of the country’s leading experts in hospice care, and associate professor of public policy at Duke university, says its usually the hospice’s culture which dictates whether it will provide extra and more costly treatments.
“The way Medicare works, (the hospice benefit) is incredibly flexible. Ten patients with the same diagnosis might be treated very differently,” Taylor says.
Those who know the inner workings of San Diego Hospice say the organization was founded on the principle that money should never matter in someone’s dying days and it continued under that philosophy until 2011, when senior management changed and the federal government began its crackdown on hospices.
Dr. Doris Howell started San Diego Hospice with a handful of others in the 1970’s. She worries about the increasing number of for-profit hospices, admitting her bias.
“The only way you can make money in hospice is to not give a service, because if you give a service there’s a cost attached to it,” she says.
”I started (San Diego Hospice) as a nonprofit, and I still believe you mustn’t make a profit out of dying. You just mustn’t and I’ll fight that till my own death.”
San Diego Hospice is currently embroiled in a nasty bankruptcy battle over how its remaining assets will be divided. A Medicare audit and federal investigation is questioning its integrity, and it could owe the federal government as much as $50 million in patient reimbursements.
And just last week the KPBS and inewsource revealed questions about patient care, documented in dozens of inspections reports by state health officials.
San Diego is sitting on the “biggest mess in the history of hospice,” according to Taylor, referring to the steep fall of the country’s leader in hospice care to a diminishing heap of assets in bankruptcy court.
He says across the country, leaders in hospice are still scratching their heads about what went wrong. Other hospices have faced Medicare Audits – one in Phoenix agreed to pay $12 million to Medicare last week, after it was accused of submitting false claims.
For Doris Howell, it’s a bitter end to her legacy – one that took decades to build.
When asked why the organization didn’t fight for its survival, she says there just wasn’t enough support on the board of directors.
“The decision was made by the CEO.”
But she says,“please don’t say I gave up.”
Howell muses about her own death, and says she always wanted the corner room at San Diego Hospice’s acute care center in Hillcrest.
“And now that’s gone.”