Patient Attitudes Toward Palliative Care
An important article was just published in the British medical journal The Lancet, which concluded that patients with advanced disease might be unduly suffering from pain-not because they lack available medication, but because they fear addiction and side effects from the drugs.
Dr. Ezekiel Emanuel of the National Institutes of Health in Bethesda, Maryland and colleagues interviewed close to a thousand patients with terminal illnesses to assess whether they were receiving adequate palliative medication for their pain. Palliative treatment is treatment to ease symptoms and side effects (such as pain) rather than to cure illness.
Surprisingly, he found that less than a third of the patients experiencing moderate to severe pain wanted to increase their pain medications. About 10 percent of the patients with pain had stopped taking medications altogether. The reasons: fear of potential addiction, and concern about the side effects (such as constipation and mental confusion) that might result.
In an accompanying editorial, Dr. Sam Ahmedzai of the University of Sheffield in the U.K. blamed this lack of patient willingness to alleviate their own pain on widespread misinformation about pain medications. He called on physicians to better educate their patients about advances in treatment options, especially if the patients are battling terminal disease.
The Journal of the American Medical Association recently focused an entire issue on caring for patients with advanced disease. Prior to its publication, the Journal held a symposium with experts in the field of palliative (symptom-relieving) care. Their conclusion? The use of palliative care-especially for pain relief-is finally gaining acceptance by a growing number of U.S. doctors. Also, state and federal government agencies are now starting to fund more palliative care initiatives, although still nowhere near the level they should be.
One major stumbling block, they said, is the federal Medicare program. Medicare will still not pay for many outpatient prescription drugs to relieve chronic cancer pain. And the Medicare hospice benefit is now effectively a barrier to end-of-life palliative care. Patients can get hospice care only when they have been told they have six months or less to live, and they must give up all other Medicare benefits.
According to another survey appearing in that same issue of the Journal, freedom from pain is the primary factor that people consider important at the end of life. A team of researchers led by Dr. Karen E. Steinhauser of the Veterans Affairs Medical Center and Duke University in Durham, North Carolina surveyed 1,462 seriously ill patients and found that pain management was their most important priority, followed by being at peace with God and being with loved ones.
Other areas that ranked high in importance included good patient-physician communication, being prepared for death, and achieving "closure." Items that were considered important by patients but less so by physicians included being mentally alert, not being a burden to others, and having time to plan funeral arrangements. Interestingly, the researchers also found that dying at home was not a priority.
"People don't fear death," said Steinhauser at a press conference announcing the survey findings. "They fear bad dying."
SOURCES:
The Lancet, April 28, 2001; 357:1311-1315, 1304-1305
Journal of the American Medical Association, November 15, 2000; 284:2460-2468, 2476-2482, 2495-2507