A prayer for the living

The Washington Post headline was not subtle: “Hospice firms draining billions from Medicare.” In the story, reporters Peter Whoriskey and Dan Keating laid out their findings: that the more and more, hospice patients are no longer sufferers on the brink of death, but persons with disabilities in need of long-term care. Because hospice programs require a doctor’s certification that a patient has less than six months to live, many patients spend years skipping in and out of hospice: no sooner are they discharged than a doctor re-certifies them as dying and they are re-enrolled.

Whoriskey and Keating present this situation as a scandal. Hospice firms, they say, are no longer angels of mercy allowing the gravely ill to “die in their own homes.” Instead, they roam the streets looking for chronically-disabled people to enroll in their programs on the false premise that their conditions are terminal, in order to rack up major profits at Medicare’s expense.

In framing the issue this way, however, the Post is missing an important part of the story.

People with chronic, but not immediately terminal conditions enroll in hospice because it’s a loophole enabling them to receive care they desperately need. While hospice programs are funded by Medicare, they provide many services that Medicare will not pay for a la carte.

In the last years of my grandmother’s life, my mother arranged for her to be enrolled and re-enrolled in hospice, in exactly the manner described in the Post article. At first I found this disturbing, but I quickly saw the real benefit in her life. Medicare would not cover weekly visiting nurses to check on my frail 93-year-old grandmother, but it covered hospice, and hospice would provide that service. Medicare did not cover some of the equipment and daily-living care that my grandmother needed; hospice did. My grandmother received better care from hospice than she could have received directly from Medicare, and that care did — yes — prolong her life by precious months, for which I will always be grateful.

So many people at all ages, young and old alike, who live with disabilities and chronic illnesses find that they have to fight to receive adequate care and compensation from the state. Most people with disabilities are underserved; Medicare and Medicaid policy require them to be poor, isolated, and unemployed in order to receive the benefits that, ironically, might otherwise enable them to work, socialize, and save for the future. Often, even the benefits they do receive are not enough to keep them healthy and mobile.

The Post article paints in a sinister light the activities of hospice outreach specialists — a term the article places in scare quotes. They “solicit doctors and hospitals,” “make connections at nursing homes,” and even show up at “health fairs at senior centers,” Whoriskey and Keating write. Horrors! “For families struggling to take care of a loved one,” they add, “[hospice outreach workers] offer the promise of extra help.”

The article refers to this as “recruiting” more lucrative, non-terminal patients. But the passage I have just quoted also contatins the assumption that the family is the only proper caretaker of people with long-term disabilities. The idea that it might be worthwhile to provide services that allow a “patient” to remain independent apparently does not cross the Post’s mind.

“How do you solicit patients?” the article quotes one hospice “marketer” as saying. “You see somebody sitting on the front porch in a wheelchair and you hit the breaks.”

This is presented as a hard sell from a profit-minded industry. I see a zealous outreach to a gigantically underserved population — people whose very lack of resources often keeps them housebound and isolated.

The Post is observing a real phenomenon: a movement which originally sought only to give “comfort” and palliative care to the dying is evolving to fill a gap in care for the non-dying. But it makes a mistake in framing this story as a story of fraud. The real story is the gap itself, the shortfalls in our societal safety net, and the reasons why so many chronically ill and disabled adults are forced to have themselves certified “dying” to receive the care they need to live.

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There are two other points I want to make about this. First is an article the Post published on a day later: “Shelters Fill as Rent Aid Disappears.” This story describes exactly the same phenomenon as described in the hospice story — underserved people turning to a another service, one intended to be temporary, in order to receive the long-term help they need. But here the villain of the piece is not the city’s shelters but Mayor Bloomberg, who canceled the rent-subsidy program. This story could just as easily have been headlined “Shelters Drain Millions from City.” It’s a matter of perspective, I suppose.

Second, and more importantly: Massachusetts recently defeated a “Death with Dignity” euthanasia bill, though an identical bill, I’m told, has recently been resubmitted. During the 2012 debate on the matter, pro-euthanasia advocates pooh-poohed the idea that, given the opportunity and in the belief that they were helping their patients, doctors might certify as “dying” patients who had merely chronic conditions. That would never, ever happen, they argued. The euthanasia option would only ever be offered to patients who really, truly only had a certain number of months to live.

So I’d like to point out that in the case of hospice, doctors who believe that hospice services will help their patients with chronic conditions have certified them as having only six months to live. That has happened. Is, if one is to believe the Post, a wide-spread phenomenon.

In the case of hospice, the service doctors are hoping to gain for their patients with disabilities amounts to services helping them to live. But if those same doctors believed that their patients’ lives were not worth living — and studies have shown that doctors tend to underestimate the quality of life of patients with disabilities — there is no evidence that they would not bend the rules in exactly the same way to help them die.

 

 

 

 

 

 

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