A surprising number of frail, elderly Americans in nursing homes are suffering from futile care at the end of their lives, two new federally funded studies reveal.
One found that putting nursing home residents with failing kidneys on dialysis didn't improve their quality of life and may even push them into further decline. The other showed many with advanced dementia will die within six months and perhaps should have hospice care instead of aggressive treatment.
Medical experts say the new research emphasizes the need for doctors, caregivers and families to consider making the feeble elderly who are near death comfortable rather than treating them as if a cure were possible — more like the palliative care given to terminally ill cancer patients.
"We probably need to be offering a palliative care option to many more patients to make the last days of their lives as comfortable as possible," said Dr. Mark Zeidel of the Beth Israel Deaconess Medical Center in Boston, who was not involved in the studies.
Palliative care focuses on managing symptoms of a disease and a main goal is to relieve pain at the end of life.
End-of-life care became a divisive issue in the national health care reform debate this summer after one proposal included Medicare reimbursement for doctors who consult with patients on end-of-life counseling. Critics called the counseling "death panels" and a step toward euthanasia. The Obama administration denied those claims, yet has signaled the Medicare benefit will be dropped.
The new studies are published in Thursday's New England Journal of Medicine.
In one study, doctors looked at health records of 3,702 nursing home residents nationwide who started dialysis between 1998 and 2000. The average age was 73 and many had other health problems, including diabetes, heart disease and cancer.
Within the first year, 58 percent died and another 29 percent declined in their ability to do simple tasks such as walking, bathing and getting dressed.
Kidney dialysis helps remove waste from blood, and the vast majority of patients with kidney failure benefit. However, in the case of seniors with failing kidneys, it is less clear whether the benefit outweighs the burden.
The findings call into question the common practice of transporting dialysis patients near the end of life to dialysis centers several times a week and hooking them up to a machine for hours at a time.
"We may be overestimating the benefits of dialysis in some of these patients and downplaying the burdens," said lead author Dr. Manjula Kurella Tamura, a Stanford University kidney specialist.
The study did not include a comparison group of patients who didn't get dialysis, so it's unknown if more elderly are dying after starting dialysis than not. Kurella Tamura said there's no one-size-fits-all recommendation for which nursing home residents should go on dialysis, and she suggests patients talk with their doctors about realistic expectations.
The second study followed 323 people with advanced dementia from Boston-area nursing homes. Their average age was 85 and they could not recognize loved ones and were unable to talk or walk.
One out of four died within six months and half died during the 18 months they were followed. Nursing home residents with advanced dementia were more likely to die of pneumonia, fever and eating problems related to their dementia than from strokes or heart attacks.
During their final three months, 41 percent received aggressive care including being hospitalized and tube feeding. However, if the person making their medical decisions was aware of their poor prognosis, they were less likely to receive aggressive care near the end of life, the research found.
"We often temporarily inflict discomfort or pain on patients. We try to minimize it, but we accept it because we think the trade-off is curing or healing," said Dr. Greg Sachs of Indiana University School of Medicine.
In an accompanying editorial, Sachs recalled how his grandmother, who suffered from Alzheimer's and lived in a nursing home, was aggressively treated with antibiotics for every infection in her final months and had to be restrained. He said that people with dementia could benefit from hospice care inside a nursing home or in the community.
Sachs cited research that found nursing home residents who had hospice care during the last month of their life were half as likely to be hospitalized. What's keeping dementia nursing home patients from getting hospice care is that dementia is not widely recognized as a terminal illness. It's also harder to predict when a dementia patient has six months or less to live — a criteria for Medicare-paid hospice care.
The National Institutes of Health funded the studies. The dementia study was led by the Harvard-affiliated Hebrew Senior Life Institute for Aging Research in Boston. In the dialysis study, Kurella Tamura has received grant support from Amgen, which makes a drug for people with kidney disease undergoing dialysis.