Goldilocks, all grown up and working as a Medicare hospice auditor, checks the records of three patients. She frowns at Mr. Brown Bear’s record. He was referred to hospice three days before he died, after spending several costly weeks in an acute care hospital, the last two in an intensive care unit. “This patient was admitted too late!” she says. The next patient, Mrs. Grizzly, has been in hospice for seven months and is still very much alive. “She was admitted too early!” Goldilocks says, shaking her head. Finally, she smiles when she looks at Grandpa Teddy’s record, “Just right! He was admitted three months before his death, well within the six-month expectation for his terminal cancer.
The modern hospice movement started in the 1970s as a holistic philosophy of care that stressed pain and symptom control as well as emotional and spiritual support. When hospice became a Medicare benefit in 1982, partly predicated on being a cheaper as well as more humane form of care, it became a set of federal rules. Now it is a business model complete with cost-cutting and revenue-enhancing strategies. Can hospice serve all these masters? And to what degree do patient and family preferences and values enter into these equations?
Two recent studies demonstrate the tension between efforts to bring the benefits of hospice to patients and their families earlier in the course of a final illness and the requirement that hospice patients die on regulators’ schedules and without expensive drugs or procedures that affect the bottom line.
Joan M. Teno and colleagues reported on changes in end-of-life care for Medicare fee-for-service beneficiaries in 2000, 2005, and 2009. At first glance the news looks good. In 2009 more people were dying at home (32.6 percent), where they almost universally say they want to be, than in 2000 (24.6 percent) More people (42.3 percent) were using hospice at the time of death in 2009 compared to 2000 (21.6 percent). But there is more to the story. A third of the people who died in hospice care were treated in an ICU in the last 30 days of life. Over 40 percent of these patients had a transition from one care setting to another in the last 30 days. Transitions at any stage of illness are traumatic but they are particularly burdensome when a person is acutely ill.
On the “too late” side of the equation, although hospice use increased, 28.4 percent of these patients used hospice for three days or less. A day or two of hospice care may be better than dying in a hospital but it barely provides the opportunity for patients and families to adjust to the new staff, services, and routines. Even though hospice provides bereavement services for a year after a death, many families may not take advantage of this service because they have not developed a trusting relationship with hospice. Whether they use this service or not, their last memories are likely to be of the confusion and chaos surrounding the transitions. This seems the worst of all possible end-of-life care scenarios — aggressive intensive care, unlikely to change the outcome, followed by a difficult transition, and ending with a few days of hospice care.
An editorial by Grace Jenq and Mary E. Tinetti calls the changes reported by Teno et al. “more, not better care.” In place of what they call the “default” decision of transfer to an ICU as patients accumulate acute medical problems at the end of life, they suggest developing explicit criteria for ICU admission — “a threshold of likely benefit and expectancy.” While such a standard might be defensible, it would be difficult to craft and implement, and would likely encounter resistance from physicians who are committed to “trying everything” and from families who insist on “doing everything.” When there is conflict within a family, one person with a strong view can block consensus. Finally it is much easier for providers (and families) to opt for ICUs, when insurance, which covers hospital care much more completely than care in any other setting, is picking up the tab.
On the “too early” side of the hospice pendulum, Melissa D. Aldridge Carlson and colleagues reported on a survey of 591 hospices and found that 78 percent had “at least one enrollment policy that may restrict access to care for patients with potentially high-cost medical care needs.” For example, patients who have intrathecal catheters to administer medications, or are receiving palliative chemotherapy or radiation may be denied access. Twelve percent restricted access if the patients did not have a caregiver at home.
Barriers were found most often in small hospices, for-profit hospices, and hospices in certain regions of the country. Hospices in the Mountain and Pacific census regions tended to have the most restrictive policies, while those in the South Atlantic region had the least restrictive policies. Nonprofit hospices were almost twice as like to have open-access policies as for-profit hospices, which are the fastest growing segment of the hospice industry. Hospices interpret the regulations differently and make different decisions about whom to accept. Doctors, patients, and families are left without the information they need to make the best choice possible under the circumstances. In some areas there is only one hospice, making the option essentially unavailable.
The Teno study looked at three diagnoses – cancer, chronic obstructive pulmonary disease (COPD), and dementia. Hospice was designed for cancer patients, but increasingly patients with other, less predictable diseases are potential hospice beneficiaries. It was also designed to be flexible in terms of length of stay, recognizing that there would be patients with very short stays and some with very long stays. Predicting when a patient has six months or less to live is not a hard science. Some patients do very well on hospice because of the good care they receive, which keeps them out of the hospital. They outlive the first six months even though their overall health is declining. (My mother was one such hospice patient.) It seems counterintuitive to penalize hospices for providing good care, even if it means a longer episode of care.
There is a process for recertifying these patients for continued hospice services, but with auditors looking over their shoulders, hospices are wary of too many recertifications. It is too soon to tell whether San Diego Hospice’s decision to file for bankruptcy will be a trend or an isolated event. If white knights in the form of hospitals rescue hospices and take them over, will that improve access to care or will it simply make the hospice decision even more dependent on the perspective and economics of acute care settings?
What to do? In their editorial, Jenq and Tinetti point out that site of death is an inadequate measure of the quality of end-of-life care, “given the many transitions endured, and intensive care services received.” A more appropriate metric, they suggest, might be whether patients’ goals were elicited and care intended to achieve those goals provided early enough to make a difference. Teno and colleagues suggest increasing the hospice per diem rate for patients who require complex palliative treatments. They also propose removing the Medicare hospice benefit limit on receiving concurrent care.
But there is a more basic problem. Many patients and families don’t know what hospice is and what it is not. They know even less about palliative care. But they do want more information. I direct the United Hospital Fund’s Next Step in Care campaign; of the more than 20 family caregiver guides on our Web site, the most frequently downloaded by far is the guide to hospice and palliative care. Hospice is not the right choice for everyone. And hospices vary in terms of quality. But hospice should be accepted or rejected on the basis of reality, not myth, and with the expectation that patients and families are the central figures.
Hospice and palliative care are part of a continuum of care. While outpatient palliative care is becoming more common, palliative care is still mostly available in hospitals. Making palliative care at home a Medicare benefit would make it easier for patients and families to approach advanced illness as well as end-of-life care in a more coordinated and compassionate manner, rather than the abrupt transition it now is for many patients and families.
Just like the three bears in the children’s story, hospice patients come in all sizes. Goldilocks was an intruder who did a lot of damage in her search for “just right” accommodations before being discovered and fleeing into the forest. Goldilocks as hospice auditor should avoid doing harm by penalizing patients who do not fit the “just right” standard.
Carol Levine is director of the Families and Care Project of the United Hospital Fund and a Hastings Center Fellow.