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HEALTH CARE POLICY Medicare May Restrict Good Care for Dying Patients A recent report by researchers at HMS, HSPH, and RAND found that many health care providers believe that Medicare regulations block them from providing good care to dying patients. The study, led by Haiden Huskamp, HMS assistant professor of health economics, appears in the May/June Health Affairs. Researchers led by Haiden Huskamp discovered that many providers believe Medicare rules impede them from giving good end-of-life care. Photo by Graham Ramsay In the first systematic interviews of health care providers on fee-for-service Medicare coverage and payment for end-of-life care, the providers said that patients with particularly high-cost needs at the end of life sometimes have problems gaining access to nursing homes, hospitals, and home health care services. The researchers collected their data through structured in-person interviews of clinical and administrative staff members at hospitals, hospice agencies, home health agencies, skilled nursing facilities, and physician practices in six study sites around the country. "Most interviewees praised the comprehensiveness of the Medicare hospice benefit, but many said that the level of hospice per diem rates—$98.96 per routine day—don't support the relatively expensive services that some patients need, such as costly pain medications or palliative radiation or chemotherapy," Huskamp said. Patients who depend on a ventilator to breathe or have end-stage liver disease are sometimes denied access to local nursing homes, said one public hospital discharge planner. Patients needing particularly high-cost ancillary services including medications and lab tests also experience problems gaining access to nursing homes, according to some interviewees. Modern Hospice Movement Founder Stresses Quality of Life, Respect for Terminal Patients Sometimes physicians must not concern themselves with "people getting better, but doing better," Dame Cicely Saunders, founder of the modern hospice movement, told the audience during her presentation of the George W. Gay Lecture in Medical Ethics on April 23. In her talk, "Some Ethical Issues in End-of-Life Care," Saunders, who was a nurse and medical social worker before becoming a physician, said doctors are trained to view death as a negative achievement in living, but that they need to know there can be a "positive achievement in dying." This is what she strives for at St. Christopher's Hospice in London, which she founded in 1967 as the first research and teaching hospice linked with clinical care. Saunders emphasized the need to help the terminally ill maintain the respect they deserve until their death. She said that when nurses at St. Joseph's Hospice in London began giving patients morphine on a regular basis, rather than on-demand after time spent suffering, it made an improvement in their quality of life. "I only want to be myself," a patient at St. Christopher's once told her. Saunders said this can be somewhat accomplished by easing the suffering, and she says she sees nothing wrong with alleviating the pain with drugs. She said there are two myths about giving drugs to terminally ill patients. The first is that if you give them too soon, patients will develop a tolerance for them. The second is that they will become drug-dependent. When asked by a member of the audience whether she believed in euthanasia, Saunders said that though life support is not used at the hospice, she does not believe in euthanasia. "We cannot safely legalize euthanasia," she said, underscoring her concern that if it were legal, dying patients would be vulnerable. "Palliative care is about the respect of the patient," she said. —Michael Higgins The Unwanted Sick Providers expressed concern about the impact of the prospective payment system on home health agencies, one of the changes mandated by the Balanced Budget Act of 1997. Interviewees from one public hospital believed that local home health agencies were delivering lower-quality care and dismissing patients sooner than they should because of the change in payment systems. Several physicians reported that concern over straining a hospice's budget had prevented them from referring patients who needed expensive care. The new system may result in an increased burden on the family and in the "dumping" of sicker home health patients into hospices. Under the prospective payment system, "there is an incentive to provide less," Huskamp said. The research identifies specific barriers to care and suggests remedies that would not necessarily add costs to the system. The proposed solutions also are consistent with modifications made by the Balanced Budget Act. The study calls for further research in areas that pose particular problems to the millions of patients who need end-of-life care and who account for more than a quarter of the annual Medicare budget. "The payment system was created almost 20 years ago and the types of services that were used for end-of-life patients in hospice were different back then," Huskamp explained. The researchers recommend a policy for increasing reimbursement in cases that require especially high-cost services. Since this revision might not be sufficient, they also recommend a study on the need for revising hospice rates. Out-of-Date Costs Many of the providers interviewed said that the per diem hospice rates are out of date also because they do not factor in the steep decrease in the average hospice length of stay. In the past, higher costs associated with the first and last days of hospice care were distributed over more days in between that cost less. With the national average length of stay having declined 27 percent from 1992 to 1998, the burden of the high cost first and last days has increased. In response, the researchers recommend a higher per diem for the first and last days of hospice, with a possible reduction in the middle-of-stay per diem if a counterbalancing decrease were needed. For the study, patients at the end of life were defined as "patients who have a progressive, incurable illness that will end in death despite good treatment, and who are sick enough that you would not be surprised if they died within six months." Co-authors are Joseph Newhouse, the John D. MacArthur professor of health policy and management at HSPH, professor of health care policy at HMS, and vice chair of the Medicare Payment Advisory Commission; Virginia Wang, research assistant in the Department of Health Care Policy at HMS; and Melinda Beeuwkes Buntin, a health economist at RAND. The study was supported by the Robert Wood Johnson Foundation and the Commonwealth Fund. —Heather Ettinger