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Should More Patients at the End of Life Be Referred to Hospice?

Hiscott, Rebecca

doi: 10.1097/01.NT.0000459193.14838.45
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A new study has found that Medicare beneficiaries with poor-prognosis cancer who enroll in hospice have significantly lower rates of hospitalization, intensive care unit admission, and invasive procedures in the last year of life, as well as lower total costs compared with patients who do not enroll in hospice.

Terminal cancer patients who enroll in hospice have lower rates of hospitalization, intensive care unit (ICU) admission, and invasive procedures at the end of life, as well as significantly lower total costs compared with patients who do not enroll in hospice, according to a new analysis published in the Nov. 17 issue of the Journal of the American Medical Association (JAMA).

Although the study focused on outcomes for terminal cancer patients specifically, the findings have ramifications for neurologists who advise their patients on end-of-life care and treatment options as well. Moreover, as policymakers in the United States consider the evidence for reforming and streamlining end-of-life care, the research could be brought to bear on that debate, experts told Neurology Today.

“Because these [end-of-life] conversations are really hard to have, a lot of people don't think ahead to what kind of care they want to receive,” Ziad Obermeyer, MD, an emergency physician at Brigham and Women's Hospital in Boston and one of the authors of the JAMA study, told Neurology Today. “So they end up getting sucked into this very aggressive mode of care as a kind of default option.”

The study provides more evidence that policymakers should reduce the systemic barriers that prevent some terminal patients from accessing hospice, Dr. Obermeyer said.

Experts not involved in the study agreed that the findings bolster arguments that more patients should be informed about hospice, but cautioned that the quality measures currently used to evaluate hospice don't do enough to look at patients' care preferences. These concerns will need to be addressed by policymakers, they said, in order to ensure that patients are receiving care of the highest caliber.

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Currently, Medicare regulations limit the number of patients who are eligible for, or even informed about, hospice programs, Dr. Obermeyer said. For example, Medicare penalizes hospices with inappropriately long patient stays, and does not reimburse physicians for having advance care planning discussions with patients — a shortcoming that was also highlighted in an Institute of Medicine (IOM) report on end-of-life care released earlier this year. [See “Institute of Medicine Report Calls for Sweeping Reforms to End-of-Life Care”:]

“There is this sense in the policy establishment that we need to restrict the demand for hospice, largely because people are worried that [more hospice utilization] is going to drive up costs,” he said. With the current study, Dr. Obermeyer and colleagues hoped to dispute these claims.

The study looked at Medicare fee-for-service beneficiaries diagnosed with poor-prognosis cancers such as brain, lung, and pancreatic cancers, as well as metastatic, ill-defined, or hematologic malignancies. Using Medicare claims data, they identified a group of 86,851 patients who died in 2011 after a full year of Medicare coverage and were eligible for the Medicare Hospice Benefit, which requires a diagnosis of terminal illness and expected survival of less than six months.

Dr. Obermeyer and colleagues then created two matched patient groups that differed in their utilization of hospice care. They matched 18,165 terminal cancer patients who had enrolled in hospice with 18,165 patients who did not; the patients were matched on age, sex, geographic region, time from poor-prognosis diagnosis to death, baseline care utilization, and exposure period — the amount of time spent in hospice, in the case of hospice beneficiaries, versus the equivalent amount of time not spent in hospice, in the case of nonhospice beneficiaries.

“The people who chose hospice lived just as long as the ones who didn't. But the hospice patients did so with many fewer hospitalizations, ICU stays, invasive procedures, and, ultimately, the people who chose hospice were about five times less likely to die in a hospital or nursing home,” Dr. Obermeyer said.

Among patients who did not enroll in hospice, 65 percent were hospitalized at some point during the last year of life, 36 percent were admitted to an ICU, and 51 percent underwent invasive procedures. Among hospice beneficiaries, however, 42 percent were hospitalized in the last year of life, 15 percent were admitted to an ICU, and 27 percent underwent invasive procedures.

Seventy-four percent of non-hospice patients died in hospitals or in skilled nursing facilities compared with only 14 percent of hospice patients.

The researchers noted that aggressive modes of care were largely tied to acute conditions such as infections and organ failure, as well as exacerbations of medical comorbidities, the researchers noted.



“Such care is unlikely to fit with the preferences of most patients,” they wrote.

Overall costs during the last year of life were also found to be lower for patients enrolled in hospice: $62,819 for hospice beneficiaries compared with $71,517 for nonhospice beneficiaries. The difference in cost for shorter hospice stays of between one and two weeks was smaller, but still statistically significant, the authors noted. However, the 2 percent of hospice beneficiaries who remained in hospice for more than one year had higher total costs.

Looking at the cost-effectiveness of hospice was necessary, Dr. Obermeyer said, because “it's intrinsically important to people who do the numbers at the policy level.” But an emphasis on cost should not be the driving force behind health care, he added. “The first priority is getting people the care that they want, and then if it happens to cost less, that's great.”

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Indeed, the most pressing policy issue surrounding hospice is the need to ensure a high standard of care, Joan M. Teno, MD, MS, a professor of health services, policy and practice and associate director of the Center for Gerontology and Healthcare Research at Brown University School of Public Health, told Neurology Today. Dr. Teno also contributed to the IOM report on end-of-life care.

There is a need for greater financial transparency and accountability in hospice programs, and for valid measures of care quality to determine whether health care providers are providing truly patient-centered care, she said. “This is a vulnerable population, and it's very important that we ensure that treatment decisions are consistent with an informed patient's goals of care. I'm concerned that we're making all these changes in our healthcare system and we don't have the right quality measures in place.”

Dr. Teno, along with Pedro Gozalo, PhD, an associate professor of health services, policy and practice at Brown, wrote an accompanying editorial in JAMA. They noted that in a significant minority of hospices, there are “increasing rates of hospice live discharges, hospice patients at home who are not visited by professional staff in the last days of life, and for-profit hospice programs that are less likely to provide discretionary or noncore hospice services than nonprofit programs” — pressing concerns that must be addressed as policymakers forge ahead.

For that reason, Dr. Teno warned, the cost-effectiveness data should not be over-emphasized. If hospice does prove in some cases to be more expensive than traditional care, it should nonetheless remain a viable — and valuable — option for patients at the end of life.

“Our focus should be on providing high-quality care through good, patient-centered care,” she said. “Now, if at the same time, that leads to some efficiencies within the health care system, that is wonderful.”

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“While the trajectory of illness in patients with chronic neurological diseases is quite different than that of patients with poor-prognosis malignancies, engaging in these conversations [about end-of-life care] is equally important given the frequency of functional decline, symptom burden, and cognitive impairment at the end of life in our patient population,” Maisha T. Robinson, MD, a clinical instructor in the department of neurology at the University of California, Los Angeles, told Neurology Today in an email.

Yet, because physicians are not reimbursed by Medicare for having advance care planning discussions, some simply don't do it, said Dr. Obermeyer. The result is that many patients remain uninformed about care options such as hospice or palliative care — alternatives they may prefer to invasive and aggressive treatment.

Indeed, said R. Sean Morrison, MD, a professor of geriatrics and palliative medicine at the Mount Sinai Hospital Icahn School of Medicine in New York, hospice is the “best-kept secret” in the medical system, and it needs to become accessible to a greater number of patients.

“Overall, hospices have been associated with better quality of care for people with serious illness — reduced pain, better symptom management, better family satisfaction, the same or greater survival. And this study demonstrates that all of that is provided with lower costs compared to traditional care,” said Dr. Morrison, who is also director of the Lilian and Benjamin Hertzberg Palliative Care Institute and the National Palliative Care Research Center at Mount Sinai.

In contrast, “when you look at the number of burdensome treatments that patients not in hospice receive, it's staggering,” he said. “All of these are associated with pain and discomfort, and if you think about the amount of time that these people spend in hospitals rather than with their loved ones, it's remarkable that so few people access hospice.”

In addition, many patients, families, and clinicians simply don't want to broach the emotionally fraught subject of the end of life, Dr. Morrison said. And hospice is a particularly loaded topic because it focuses almost exclusively on the terminally ill.

There is no consensus on when a physician should begin discussing end-of-life care preferences with a patient. But the IOM report advised that these discussions should be ongoing, beginning with more general conversations about advance care planning when a patient is relatively healthy and becoming more specific if a patient is diagnosed with a life-limiting illness, or as he or she ages.

Dr. Morrison agreed that advance care planning should be seen as an ongoing process, one that begins as a broad discussion and becomes more focused and detailed when a patient is diagnosed with a serious illness. “It's about matching treatments to patients' goals and figuring out the best system to do that,” he said. “And given the data we have on hospice, we need to get beyond it being a well-kept secret.”

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In a report published earlier this year, titled “Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life,” the Institute of Medicine (IOM) recommended that physicians make an effort to initiate conversations about end-of-life care with their patients, and that Medicare should provide reimbursement for such discussions. The report noted that patient surveys seem to indicate a preference for less invasive care at the end of life, but this preference is rarely reflected in the care that patients actually receive.

The committee proposed a model of advance care planning that involves an ongoing dialogue — one that could begin as early as when a patient turns 18 — about their values and goals for care at the end of life. As the patient ages, or when they are diagnosed with a serious illness, those preferences, values, and goals should be turned into flexible written documents and medical orders, they said.

“Because most people who participate in effective advance care planning choose maximizing independence and quality of life over living longer, advance care planning can potentially save health care costs associated with unnecessary and unwanted interventions,” the authors wrote. “The committee believes these savings would free up funding for relevant supporting services...that would ensure a better quality of life for people near the end of life and protect and support their families.”

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•. Obermeyer MD, Makar M, Abujaber S, et al. Association between the Medicare Hospice Benefit and health care utilization and costs for patients with poor-prognosis cancer. JAMA 2014; 312(18):1888–1896.
    •. Teno JM, Gozalo PL. Quality and costs of end-of-life care: The need for transparency and accountability. JAMA 2014; 312(18):1868–1869.
      •. Institute of Medicine. Dying in America: Improving Quality and Honoring Individual Preferences at the End of Life
        •. Medicare Hospice Benefit
          •. Neurology Today archive on end-of-life care
            © 2014 American Academy of Neurology