He Died of a Tuesday

By John Loughnane, Medicare Director of Commonwealth Community Care

There is a story passed down in my family about great uncle Ned.  Ned was a bachelor who lived on a peat farm in western Ireland.  He lived a hearty, well-fulfilled life until he died, at his farm, from a brief illness in his 80’s.  By all accounts, he had a number of medical issues but had spent little time “in hospital.” He just didn’t see the need.

On a far ago rainy April afternoon, I stood overlooking his peat farm accompanied by his neighbors who were filling in the story of Ned’s life.  As a curious young man about to go to medical school, I asked about the details of Ned’s passing.  The answer was succinct, “I believe he died of a Tuesday.” Its meaning was powerful – Tuesday was a fine day to die for a life well lived – no final diagnosis needed.

Never in human existence has dying been more complicated. Before the onset of modern medicine, most people died quickly from an acute event such as trauma or the effects of infection.  Today most deaths are a slow process of decline stemming from chronic medical conditions – heart failure, diabetes and dementia, among many.  In Massachusetts, roughly 80 percent of seniors die in the hospital, and only about half participate in any type of end-of-life care planning.

Despite the often long, drawn-out process of dying today, many patients, families and medical providers never discuss it.  As a result, dying in America has become a disjointed, problematic and costly process that often causes unwelcome suffering. When patients and families are given choices regarding their care, they often choose a process that focuses on quality of life and shared decision making.

Effective end-of-life care is rarely simply asking a patient to check a box indicating whether they’d like to be resuscitated or intubated. Rather, understanding patient goals of care means having an active, nuanced, engaged discussion of what treatment options truly mean in terms of quality and quantity of life.

At Commonwealth Care Alliance, we’ve been having these important conversations with our members at the primary care level since 2004. The focus is not on the dying process, but on providing member-centered care at all stages of life. Our comprehensive approach aims to create a care plan that honors patients’ goals of care and maximizes their definition of quality of life. –We believe this has made a difference in our patients lives and encourages meaningful discussions about patient desires for end of life care: 75 percent of our patients participate in end-of-life planning.

We’re not alone in this effort to engage in meaningful dialogue about goals. In fact, programs such as the Institute for Health Care Improvement’s Conversation Project are making great strides and in the fall of 2012 the state of Massachusetts initiated the Medical Orders of Life Sustaining Treatment (MOLST) program to improve effective, comprehensive discussions centered on patient wishes regarding end of life care. These types of efforts are moving us away from the “death-by-default” decision making culture that permeates our current system.  The idea of providing tools and guidance to allow for a better understanding of patient’s and families’ wishes and ability to impact end-of-life care is important. However, this must be supported by a societal shift, so that dying is not viewed as a failure to care by either families or the medical system.

Perhaps someday the process of dying will not need to be the intervention-based, process of care that so many Americans experience today. Sometime soon, in America, we can hopefully all die of a Tuesday.