ANN ARBOR, MI—The United States has invested substantially in hospice and palliative care in the last couple of decades, but a nationally representative survey published February 3 in the Annals of Internal Medicine shows that patients’ experiences in the last year of life are getting worse.
The study used the Health and Retirement Study, which interviewed family members after the deaths of loved ones who were 51 years of age or older between 1998 and 2010. The study checked all deaths and grouped those dying from (1) cancer, (2) heart failure and chronic lung disease, and (3) frailty of old age.
Pain affected 54% of respondents in 1998 and 61% in 2010 and increased for all diseases, though moderate or severe pain in cancer stayed nearly steady. Depression, periodic confusion, shortness of breath, incontinence, fatigue, lack of appetite, and anorexia all increased as well. Different adjustments and categories have different implications for statistical significance, but all categories trended worse.
The use of hospice care before dying doubled between 2000 and 2009. While palliative care was just being established in most hospitals, many initiatives in this time span focused on better decisionmaking and better symptom management, yet improvement is not evident.
“The symptom burden of people nearing the end of life is quite substantial and, at least from the family’s perspective, is worsening,” said Adam Singer, lead author. “This may be because dying people are living longer in very fragile health, more medical interventions are being used, or… family members have higher expectations.”
“The overall trend is alarming, and these findings call for serious and thoughtful response,” said Dr. Joanne Lynn, co-author and director of the Center for Elder Care and Advanced Illness at Altarum Institute. “The country has invested a great deal in better end-of-life care, yet we are losing ground. Every person wants to be confident that he or she will live as meaningfully and comfortably as possible through to the end of life; however, what awaits us toward the end is a very difficult passage. Health care managers and clinicians need to build on what works and to learn a great deal more about how to arrange supportive and palliative services so that it is safe to come to the last part of life. The public should demand better performance.”