End-of-life care, planning fails patients

Despite repeated calls for improvement in end-of-life care and planning, pain and suffering has actually increased for dying patients, and significant barriers still stand in the way of effective discussions about patients' care options, according to recent research.

In one study published in the Annals of Internal Medicine, researchers measured pain intensity and the prevalence of other symptoms in more than 7,000 participants in the national Health and Retirement study of U.S. residents age 51 and older. It found that between 1998 and 2010, rates of pain increased by almost 12 percent for patients in their last year of life, while rates of depression increased 26.6 percent and periodic confusion went up by 31.3 percent.

"We've put a lot of work into [improving end-of-life care] and it's not yielding what we thought it should be yielding. So what do we do now?" asked Joanne Lynn, M.D., one of the study's authors, according to NPR.

One possible reason for the backslide in care quality can be found in another study, published in JAMA Internal Medicine, which surveyed doctors, nurses and medical residents in 13 university-based hospitals in Canada.

Based on the clinicians' observations, researchers found that discussions about end-of-life care are most often hampered by patients and their family members. The most common reasons cited were: both patients and their families' difficulty accepting a poor prognosis, limited understanding of life-sustaining treatment options, disagreement among family members about care goals, and patients' inability to make decisions about their own care.

But the study doesn't let clinicians--or their employers--off the hook so easily. Researchers note that 60.3 of the doctors and nurses polled reported they had not been formally trained about how to discuss goals of care with dying patients and their families.

In an attempt to address this problem, Massachusetts recently became the first state to require physicians to offer end-of-life planning to patients, FiercePracticeManagement reported. One institution has called for a solution called "Code Comfort," which encourages healthcare organizations to treat patient pain with the same urgency as "Code Blue" life-threatening medical emergencies.

"We need training and tools that enable us to navigate--in a sensitive and compassionate manner--the sometimes difficult discussions in which we help patients and families cope with a poor prognosis, understand what is important to them, and focus on the things we can do to support these goals," researcher John You, M.D., associate professor of medicine at McMaster University in Hamilton, Ontario, Canada, told Medscape.

Even with proper training, though, it can be difficult for clinicians to rise to the challenge of having an open discussion about death with their patients, Tim Ihrig, M.D., a palliative care physician at UnityPoint Health in Fort Dodge, Iowa, told NPR.

"We don't have the vernacular in our society to have the conversation about the end of life," he said. Therefore, "a lot of practitioners aren't honest. We fail to empower patients with the truth."

To learn more:
- access the Annals of Internal Medicine study
- check out the JAMA study
- read the NPR report
- here's the Medscape article