My father-in-law is dying.
He's battling a recurrence of esophageal cancer. The deadly disease was in partial remission for barely a year before we found out in December that it had come back with a vengeance. We are hopeful that he'll be able to celebrate one more Christmas with his six children and 14 grandkids.
He'll be the third grandparent that my kids have lost to cancer — my father died six-plus years ago, my mother-in-law three years ago.
One of the most frustrating things about my dad's and mother-in-law's situations was the lack of any significant conversation around end-of-life care. Sadly, my father-in-law is headed down the same path. Early on, his doctor did say, "I won't let you suffer," but that's been it. There was no explanation of what that meant and there hasn't been a hint of any follow-up conversation or meetings with the family.
Our situation isn't unique. As you all know, end-of-life care is one of the most vexing problems facing the nation's health care system. Unfortunately, it is also one that we tend to shy away from addressing in any systematic way. The infamous "death panel" debates have left a lasting scar.
But we can't continue to ignore the situation for much longer. The human and economic costs are just too high. By some estimates, nearly one-quarter of Medicare payments are spent on patients in their last year of life. Yet, as a recent viewpoint column in JAMA Surgery points out, "Studies have shown improvement in clinical care by assessing end-of-life preferences, delivering value-congruent care, and coordinating the care recommended by different health care providers."
A study published last November in the Journal of Clinical Oncology found that cancer patients who had early discussions about end-of-life care were less likely to receive aggressive treatment before death and were twice as likely to receive hospice care. Yet, the median for initiating a conversation was 33 days before death.
The JAMA Surgery column suggests that policymakers could pull on at least three "levers" to alter the tide: ensuring that graduate medical education prepares physicians-in-training to have meaningful conversations with their patients; using Medicare payments to "mandate that goals of care be addressed with all patients"; and expanded hospital scorecards. Here, the authors note that of 50 measures on the Joint Commission's annual report, "none address end-of-life care or assessment of patient preferences." Adding them would improve practice and further advance patient-centered care, the authors argue.
Whether such policy actions would work, let alone gain traction, is probably open for debate. In the meantime, there are steps hospitals and other providers can take to advance the ball. Last year, the American Hospital Association's Committee on Performance Improvement issued two reports on how hospitals can better address advanced illness management, which actually goes beyond end-of-life care. In an interview last October, Committee Chair Jim Diegel, president and CEO of St. Charles Health System in Bend, Ore., explained that there is wide variation in how well advanced-illness management is being adopted. So one of the goals is to spread best practices.
As noted on the report's Web page, "Appreciating the benefits and partnering with advanced illness programs sooner rather than later can make the utmost difference between ‘dying well' and ‘dying badly' and should be the draw to managing advanced illness and engaging with one's mortality."