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.
I question the odd premise behind this “story” and behind the other “stories” in this series about “end-of-life care” for extremely compromised, totally dependent, very ill people who are tube-fed and breathe only with the assistance of a respirator. If someone asked me these “questions” from your list, and I were in such a powerless state, I would think you wanted to put an end to my life and I would be frightened beyond imagining.
Truly caring medical or paramedical helpers provide comfort and solace to an ill person. They do not ask “what things make your life worth living?” Rather, they may ask a patient to reminisce about his or her past. They provide a calming presence. They let the patient know he or she can say or ask anything at all and they promise to try to respond helpfully. They listen. They seek clarification when there is confusion; they reassure the patient, always, and are open to hearing what the patient wishes to say — or not say.They demonstrate acceptance.
Conversations about what a person wants medically when they are in extremis need to happen years before the point at which a person is intubated for nourishment and can breathe only with help of a respirator. At that juncture, only loving kindness applies, not an interrogation from some detached outsider who is interested in promoting abstract “quality of life.”
There is only one thing that makes life worth living, a sense of meaning; and there is only one way to diminish as much as possible the sense life is meaningless, the ideal reaction to the void. http://www.thelastwhy.ca/poem/