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In this First Take, Linda Cornfield, MD writes how she discusses end-of-life care with patients and their families. End-of-life care is an important and complicated conversation to have with patients and they need help finding their way down this path.
As a society, we tend to shirk from discussing end-of-life issues. Not exactly robust dinner conversation, is it? Unfortunately though, this reticence often extends to our professional encounters as well. And there are many legitimate reasons for this. These conversations are difficult to initiate, easy to stumble through, and often, frankly, depressing. Why would we choose to add this to our busy schedule?
Although I opted to pursue formal training in palliative care, most of my days are spent as a hospitalist in a medium-sized community hospital. In this role, I see patients when they are acutely ill and vulnerable-in the chaos of the emergency department, groggily in the early morning hours, on team rounds as they try to process test results, discharge planning, medication changes-and, simply, while they are sick and weakened.
This is not an optimal setting for any complex and challenging discussion, but unfortunately it is often the first time that end-of-life issues are brought up. They learn of “code status,” advance directives, power of attorney options, and the difficulties of prognostication.
The struggle to process all of this frequently leads down many other paths and ends up being a prolonged and complicated conversation. But it is an important one.
I routinely see the consequences when these conversations have been missed. A demented elderly patient is admitted without advance directives and now cannot make clear decisions. A patient is intubated emergently without clear directives. “Routine” procedures (ECHOs, MRIs, CTs, chemo, transfusions, etc.) are done on patients nearing the end of life without ever asking if that is indeed how they want to spend their last days, weeks, or months. And yet it is easier to proceed down our usual path than to stop and probe these sensitive areas.
One elderly woman stands out in my memory. She had been admitted more and more frequently as her disease progressed. She was tired. After offering her home hospice, she cried and told me, “I didn’t know I was allowed to say no,” to our interventions. Studies support that she is far from alone in her desire to die at home and to not spend her final days bouncing in and out of the hospital.
Our patients need help finding their way down this path and their primary care practitioners are often the best resource they have. These conversations are difficult, but easier with a known and trusted ally to help guide them. Sometimes a few statistics or a turn of a phrase can help open that door. I, personally, always tell patients that these are questions I try to ask all of my patients-it’s not that I’m picking on them because I’m worried or have some insight that they do not.
Given all the challenges we face as a society, it is my hope that with fair compensation for the time and energy spent, at least the financial obstacle will be lessened. As medical professionals we can thereby focus our energies on the emotional challenges inherent to this arena and increase our own comfort and capacity. Only by doing this can we give our patients the gift of meeting them halfway on this complex and often intimidating journey.
Linda Kornfeld, MD, has worked as a hospitalist since 2008 in various community hospitals, including currently in Manchester, New Hampshire. She graduated from the Drexel University College of Medicine in 2004 and finished her residency in 2008. She is board certified in palliative medicine.