End-of-Life Care Inadequate
Dying Patients Get Little Pain Relief, Emotional Support From Staff
"The take-home message is that dying patients in a hospital or nursing home need loved ones to act as an advocate, and very clearly, they need to be there in multiple shifts to make sure the patients gets proper care," Teno says. "Based on my own experience as a physician, I can tell you that having someone there who advocates for you improves medical care, since patients can't often do it themselves."
Agreed, says Robert Buckman, MD, an oncologist at the University of Toronto and author of I Don't Know What to Say and other books of end-of-life medical care.
"For instance, pain medication often results in constipation and for some dying patients, that's a bigger problem than the pain," he tells WebMD. "Patients often feel embarrassed mentioning it, but a relative can - and better ensure someone can address it. Often, nurses and physicians don't realize this." He recommends that relative "advocates" keep a "shopping list" with the key medical care issues to discuss with caregivers.
Buckman was not involved with Teno's study, published in this week's Journal of the American Medical Association, but says he isn't surprised by its findings.
"One of the biggest stumbling blocks, in all of us, is a difficulty in communicating with end-of-life patients -- and that includes healthcare providers," he says. "It's a very sensitive subject and we just don't know how to talk to them." Recently, Buckman and other end-of-life specialists began producing videos, sold to medical schools and hospitals, which instruct doctors and nurses on how to better treat dying patients.
One thing loved ones can advocate: Getting hospice care for the patient, says another expert not involved in Teno's research.
"This is a wonderful and very important study, and shows there is a very marked difference in quality and satisfaction of care in patients who receive care from hospice as compared to those who do not," says Diane Meier, MD, director of the Palliative Care Institute at Mount Sinai School of Medicine in New York City.
"There are a number of factors for this, but one important one is that when you're with hospice, you can talk about what is really happening and what you want to accomplish. You can actually begin to speak the truth," Meier tells WebMD. "This is of enormous value to families who have often been moving through a healthcare system that pretends the patients are going to get better, when they're really not.