Despite efforts to enhance palliative care, recent evidence suggests that pain and other symptoms are still major issues during the last year of many patients’ lives.
In 1997, the Institute of Medicine called for improvement in end-of-life care. In the ensuing years, hospice and palliative services have grown. For example, approximately 1.3 million Americans received hospice services in 2009, compared with 1.5 million in 2013, according to the National Hospice and Palliative Care Organization. However, a large-scale study has found reports of a number of symptoms at the end of life have not abated and some have increased.
Researchers analyzed proxy-reported symptoms during the final year of life of 7,204 participants in the Health and Retirement Study, a longitudinal study of Americans 51 and older. Between 1998 and 2010, reports of pain increased 11.9 percent, reports of depression rose 26.6 percent and periodic confusion increased 31.3 percent, according to findings published in the Annals of Internal Medicine in 2015. Other symptoms also saw increases.
As a possible explanation of this phenomenon, researchers point to shorter hospice utilization and greater intensity of care late in life. A 2013 study in JAMA found that among Medicare beneficiaries who used hospice in 2000, 22.2 percent used it three days or fewer. That rose to 28.4 percent by 2009. In the same period, ICU use in the final month of life rose from 24.3 percent to 29.2 percent. About 40 percent of the brief hospice utilizations in 2009 were preceded by a stay in the ICU.
For Karl Lorenz, MD, Professor of Medicine and Section Chief for the palliative care program at Stanford University and one of the 2015 study’s researchers, these and other studies at least suggest an overuse of intensive care late in life that does not always have the desired result.
“Although we don’t know for certain the cause of worsening outcomes, we do know that more care is not always better care for end-of-life patients,” Dr. Lorenz says. “While there has been growth in the number of services for the very ill, patients are not getting the right services at the right time.”
The knowledge and experience of clinicians also play a role in easing suffering.
“Physicians rightfully have a culture of healing and don’t always know the best way to shepherd the dying process in a healthy and satisfying way for patients and their families,” says fellow researcher Adam Singer, PhD, an Adjunct Policy Analyst at the RAND Corporation. “Being more comfortable recommending palliative care options and not shying away from difficult conversations can make a big difference.”
Listening carefully to patients is key as well, Dr. Lorenz says.
“One of the most important messages from the study is to ask patients about their pain,” he says. “It’s striking to what extent increased, significant pain is present and underestimated by physicians when patients aren’t asked.”