End-of-Life Care, Particularly for Children, Lacking in U.S. Health System, IOM Report Shows

Many Americans who die of cancer "suffer needlessly from pain, nausea, depression, fatigue and other symptoms" because the nation's health care system is focused on curing the disease, according to a new report by the National Cancer Policy Board, the Washington Post reports (Okie, Washington Post, 6/20). The report, titled "Improving Palliative Care for Cancer," states, "In accepting a single-minded focus on research toward cure, we have inadvertently devalued the critical need to care for and support patients with advanced disease and their families" (AP/New York Times, 6/20). Some minority groups and people living in inner cities have less access to palliative care for cancer than their white and suburban counterparts, the board, assembled by the Institute of Medicine and the National Research Council, said. For instance, African Americans represent 14% of the U.S. population, but only 7% of hospice patients, even though they have higher cancer incidence and mortality rates than whites (Washington Post, 6/20). In 2000, the National Cancer Institute spent less than 1% of its $3.3 billion budget on end-of-life care research and training, USA Today reports. Kathleen Foley, who led the study, said, "Our nation has made relatively little progress in developing and testing interventions to control cancer symptoms. ... Nothing would have a greater impact on the daily lives of cancer patients and their families than good symptom control and supportive therapy" (Davis, USA Today, 6/20).

Barriers and Recommendations
The report states that "[i]nadequate insurance coverage, insufficient training ..., a lack of standards for treating many symptoms, an absence of research and a dearth of public information" are the "major barriers" to improving palliative care. For example, insurers generally "forc[e]" dying patients to choose between care that prolongs their lives or palliative care for the end of their lives, but not both. And Medicare only covers hospice care if patients are expected to live less than six months, a policy that excludes "many others who might benefit from such services," the Post reports (Washington Post, 6/20). The report recommends that the National Cancer Institute fund more end-of-life care research and designate cancer centers that specialize in symptom control and palliative care. Further, the report calls on the Centers for Medicare and Medicaid Services, formerly HCFA, to fund studies that examine ways to incorporate palliative care into standard treatment. USA Today reports that doctors today often "withhold aggressive pain medication and focus on fighting cancer with treatments such as chemotherapy even after it is clear that the efforts are futile." Insurers, who pay doctors more for chemotherapy than for pain management, should change the way they compensate doctors and pay for both treatment and hospice-type treatment at the same time, the report adds (USA Today, 6/20). To read the report, go to http://search.nap.edu/html/palliative_care/.

Children and Palliative Care
Like many adults, most children with chronic illnesses do not receive palliative care at the end of their lives, "mainly because no one wants to admit they're dying," the Post reports. Many sick children end up dying in hospitals, without drugs that could ease their pain. Fewer than 10% of children who die in the United States receive palliative care, the Post reports. Part of the problem is a "communication gap" between care providers and parents. For instance, care providers often recognize that a child is dying even before the parent does but fail to tell the parent; only about half of parents who come to the realization that their child is dying do so after a discussion with a doctor. The Cleveland Clinic Foundation's Joanne Hilden, founder of the Children's Oncology Group's end-of-life care task force, said, "The discussions are hard. Are we going to do experimental chemo for leukemia? Or shall we stop? Do you want to go on or off the ventilator? That's the down-and-dirty stuff. That's not a 10-minute conversation." And those discussions are not often covered by insurance. Hilden added, "How politically incorrect is it to say I don't get paid to talk to parents about the death of their child?" Another problem in treating children at end-of-life is that it is difficult to treat kids who are unable to speak. Doctors receive "virtually no training" in such care and instead have to monitor increasing heart rates, crying, agitation and irritability to discern pain levels, the Post reports (Trafford, Washington Post, 6/20).