Just what makes a life worth living? For one woman, it’s being independent enough to go to the store to buy milk. For another, it’s living at home and being able to see his grandchildren.
These are some of the responses to an experimental “conversation guide,” a tool researchers are using to initiate end of life conversations.
Ariadne Labs, a collaboration between Brigham and Women’s Hospital in Boston and the Harvard School of Public Health, is leading the study. It’s trying to determine whether asking chronically and critically ill patients the right questions will improve their end of life experience and prevent unwanted or unnecessary care.
Researchers have developed a list of seven questions for physicians to use when discussing treatment options with terminal and critically ill patients.
“What abilities are so critical to your life that you can’t imagine living without them,” is one of the questions in the guide.
Dr. Daniela Lamas, a pulmonary and critical care fellow at Harvard University, is one of the physicians conducting the study. Lamas is focusing on people who’ve spent extended periods in the hospital and are living with both a breathing and feeding tube, a population which is often invisible, she said.
She contacted inewsource about the study after reading our special series, Impossible Choice, about the more than 4,000 people who live on life support in California’s nursing homes. The stories posed a basic question: when is a life no longer worth living?
“Asking people what is important to them will only make their care better,” Lamas said.
She’s used the conversation guide to start about 15 discussions with seriously ill patients at a long term care hospital in the Boston area.
One man said he would re-consider whether he wanted more treatment if he could no longer communicate in a meaningful way with the people around him, Lamas said.
For many, maintaining their cognitive abilities was a common theme.
Lamas was surprised by how open people are about discussing these issues.
“They want to tell (me) who they are and what’s important to them,” she said.
Lamas has published articles in the New Yorker and The New England Journal of Medicine about living on life support, a limbo between life and death. As an ICU doctor, she’s brought “patients into this world,” and hopes they are given opportunities to reevalute whether they want to continue living under those circumstances.
Doctors who practice palliative care – a specialty which focuses on reducing pain and controlling symptoms – are trained to discuss patient goals at end of life. But not all doctors in other specialties know how to have these conversations, according to Ariadne Labs.
According to information about the study on its website: “The imperative now is to close the gap so that all doctors who care for seriously ill patients are competent and feel comfortable having patient-centered conversations…so that patients can live with a serious illness and into the last stage of life with dignity, control, and a sense of peace.”
End of life conversations became a political and controversial subject in 2009, when they were dubbed “death panels” and came to mean the government would decide who should live and die.
A proposal in the Affordable Care Act, commonly known as Obamacare, would have allowed doctors to bill Medicare for the time they spent talking to patients about their medical wishes if they had a terminal illness. The term death panels generated so much bad press the provision for those discussions was eventually removed.
A report released in September by the Institute of Medicine, an arm of the National Academy of Sciences, urged insurance companies to reimburse health-care providers for these conversations, calling them “critically important.”
The American Medical Association has also asked the Centers for Medicare and Medicaid Services (CMS) this past May to create billing codes for these conversations.
Click here to see the conversation guide.
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