News From the End of Life
News From the End of Life
Lancet: Dying patients willing to tolerate pain
Many fear side effects, addiction
Most dying patients are willing to tolerate pain to avoid taking opioid medications and are willing to trade off pain relief to avoid side effects and a perceived (but unfounded) risk of addiction, according to a study published in the April 28 issue of The Lancet.
Among the key findings of the study are:
• Although the number of terminally ill patients suffering substantial pain remains too high, it is not as high as previously believed.
• Of 988 patients studied, nearly equal proportions of patients described their pain as severe, moderate, minimal, or non-existent.
• Roughly half of the patients studied had sought pain treatment from their primary care physician in the previous four weeks, yet 62% of these wanted no increase in their pain medication, regardless of their degree of pain. Their reasons were fear of addiction, dislike of mental or physical side effects such as confusion and constipation, and a desire to take no more injections or pills.
• African-Americans were found to be more likely to seek additional pain therapy and to be treated by pain specialists. Yet they were also more likely to refuse increases in their medication based on fears of addiction.
Ezekiel J. Emanuel, MD, one of the investigators in the study, says the real concern in treating end-of-life pain is whether patients who want treatment receive it. Emanuel, chair of the department of clinical bioethics at the National Institutes of Health, added that physicians must communicate more effectively that addiction to opioid pain relievers is a myth.
Study: Chemo given when patients don’t respond
Many cancer patients receive chemotherapy at the end of life, even if their cancer is known to be unresponsive to drugs, according to a newly released study.
The study, involving cancer patients who died in Massachusetts in 1996, found a third of them received chemotherapy in the last six months of their lives. That finding ’strongly suggests overuse of chemotherapy at the end of life,’’ said researcher Ezekiel J. Emanuel, MD, chairman of the department of clinical bioethics at the National Institutes of Health.
Researchers found support for the growing view that oncologists continue to prescribe chemotherapy for too many cancer patients when clinical evidence indicates they are in terminal stages of the disease. There are no guidelines for appropriate use of chemotherapy at the end of life based on scientifically controlled trials or consensus statements, Emanuel said.
Emanuel’s team from Boston University and Stanford University linked information from death certificates in Massachusetts with Medicare billing records.
The researchers used standard textbooks to classify whether different cancers were generally responsive or unresponsive to chemotherapy. Responsive cancers in the study were breast, colon, and ovarian. Unresponsive cancers included gall bladder, kidney, liver, pancreatic, and melanoma.
Do Medicare rules block hospice access?
Blame directed at payment system
A recent report by researchers at Harvard Medical School, the Harvard School of Public Health, and RAND has 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, PhD, assistant professor of health economics at Harvard Medical School in Cambridge, MA, appears in the May/ June issue of Health Affairs.
In the first systematic interviews of health care providers regarding fee-for-service Medicare coverage and payment for end-of-life care, the providers said 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 says.
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.
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 be 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 families and in the "dumping" of sicker home health patients into hospices. Under the prospective payment system, "there is an incentive to provide less," Huskamp says.
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 for 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 explains. 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.
Many of the providers interviewed said that the per diem hospice rates are also out of date 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 balanced against days in between that cost less. With the national average length of stay having declined 27% from 1992 to 1998, the burden of the high-cost first and last days has increased proportionally. 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.
Nursing home patients in pain: Study
Response woefully inadequate,’ says author
A new nationwide study shows that severe pain among elderly nursing home residents is prevalent, persistent, and poorly treated.
The authors of the first national look at pain management among this frail population say the findings underrate the true pain burden experienced by the patients. They call untreated pain in nursing homes "an important national public health problem."
Results of the study were published in the April 25 issue of the Journal of the American Medical Association.
"We believe the findings underestimate the actual pain burden," said lead author Joan Teno, MD, associate director of the Brown University Center for Gerontology and Health Care Research. "Minimum Data Set data is collected by nursing home staff. It is based on staff perception, and
staff routinely underestimate the pain burden of patients."
The authors used the Minimum Data Set to examine the pain experience of more than 2.2 million people residing in U.S. nursing homes on or about April 1, 1999. They found that 41.2% of elderly nursing home residents who were in pain around April 1, 1999, still experienced moderate daily pain or excruciating pain 60 to 180 days later. Of individuals in a nursing home for between 2 and 6 months, one in seven had persistent pain. Nationwide, rates of persistent pain varied, with most states between 39.5% and 49.5%.
Urgent work yet to be done’ in managing pain
"Our findings demonstrate woefully inadequate pain management among a frail, old, and vulnerable population of Americans," said co-author Vince Mor, PhD, director of the Department of Community Health at Brown Medical School. "Important ground has been gained in the last decade in pain management, but these results highlight the urgent work yet to be done."
The study points to an urgent need for balance in public policy on pain management since recent public attention and policy have focused on the dangers of opiate prescription abuse, said Teno. "Recent media coverage has fed fears about opiate drug prescription abuse," she said, "but that should not be a reason for leaving a vulnerable population in persistent severe pain. The focus must be on quality medical care that provides competent, compassionate, and coordinated medical care for frail, older Americans residing in nursing homes and treats drug abuse as well."
The high rate of persistent severe pain has important policy ramifications, said Karen Kaplan, National Program Director for Last Acts, a coalition of more than 600 organizations united to improve end-of-life care. "Current regulations need to change to make pain a focus
at all state and federal inspections of nursing homes to comport with the new standard of the Joint Commission on Accreditation of Healthcare Organizations," she said. That standard says hospitals and nursing homes must recognize the right of patients to the appropriate assessment and management of pain.
"Persistent pain in nursing homes should be considered by regulators as an indicator of quality and reported publicly along with other indicators," Teno said. "Federal and state nursing home surveyors should assess the quality of pain management at the time of annual inspection of nursing homes. We call on local Peer Review Organizations of the Health Care Financing Administration to work with nursing homes to improve pain management in the next decade."
In addition, there is a need to enhance education of nursing home staff to give people the information and tools to improve their behaviors concerning pain management, Teno said.
She suggests that patients and family members ask a nursing home about its pain-treatment policy. "Ask if it regularly assesses pain as the fifth vital sign.’ Also ask what efforts has the home taken to be more aware of and to improve pain management."
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