My neighbor asked me to help her husband die peacefully at home. This was not a request to hasten his death. Distressed by his marked physical deterioration, she reached out to me knowing I am a geriatrics and palliative care physician. This beloved older man had resiliently reached a major milestone birthday in the midst of steady functional decline with organ failure over months. Now, more interventions, even life support, would be needed to keep him alive much longer.
Why did my neighbor contact me instead of the doctor caring for him over many years? Because her husband's doctor was not hearing or acting on what she knew to be important for her husband's end-of-life wishes. She and her husband had previously decided that his eventual death should be at home with a focus on comfort. They wanted all the support they could get, including palliative care and hospice at the appropriate times. But instead of partnering with her around his decline, acknowledging his decreased cognitive ability to participate in decisions, and revisiting the shared sense of what had been most important to him over time, the well-intentioned medical team focused on offering more interventions and didn't acknowledge his dying process. She was told he was not eligible for hospice or palliative care. She asked me: "How can this be?"
Sadly, this is more common than you might think. A recent national poll found that although 99% of the physicians feel end-of-life and advance care planning discussions are important, nearly half reported they do not know what to say and less than a third reported any prior training for these conversations. These findings are not surprising considering a 2011 study found that 45% of those becoming oncologists reported having no explicit training in end-of-life communication.
We know effective end-of-life communication can make a meaningful difference for seriously ill patients and their families, allowing patient goals and wishes to be aligned with treatment choices. Amy Berman, a nurse and national expert in geriatric health, explained how conversations she had with her healthcare team after being diagnosed with breast cancer actually ended up being "lifesaving," allowing her to live longer and better. The medical field is slowly acknowledging these benefits. Last October, the Centers for Medicare and Medicaid Services (CMS) announced that physicians will now be reimbursed for advance care planning discussions.
Would end-of-life communication skills training have helped the doctor treating my neighbor's husband provide more effective care? Very likely. Discussions about one's goals of care near the end of life are high stakes and often complex. As Amy Berman detailed:
"High-quality advance-care planning discussions help people like me understand their options and make their wishes known... over time they can guide providers to deliver the care that patients and their families want."
So how do we get physicians trained for these skilled conversations?
Communication skills experts are creating end-of-life conversation training opportunities and models to address these training gaps for medical learners from the student level to practicing physicians. These efforts teach stepwise approaches, like assessing a patient's current understanding of their disease before giving difficult news, skilled techniques, like focused listening for hints of emotion or distress, and specific phrases, like "tell me more" for an empathic approach. Experts are also beginning to emphasize formal mentored skills practice with increasing focus on role play, with and without actors. Organizations like Vitaltalk and the American Academy on Communication in Healthcare are supporting intensive in-person courses and expanding online resources for greater access. Those completing courses report having an increased sense of preparedness for difficult communication tasks that arise in working with a patient approaching the end of life and continued use of their new communication skills 2 months afterward. In a similar communication course at my own institution, doctors training in geriatrics, hospice and palliative medicine, pulmonary/critical care, and hematology/oncology report increasing their use of certain facilitating phrases like "I wish things were different" and identify specific, personalized goals for continued improvement. A project at Harvard has developed a Serious Illness Communication Guide and training course to trigger and train physicians to have more effective and timely discussions.
No doubt, these are important first steps toward improving end-of-life communication skills training for physicians. However, even with these programs, only a small minority of mostly self-selected physicians will be reached. Don't we need to make sure every doctor is trained?
Local institutional leaders overseeing medical education at the student, resident, fellow and practicing physician levels have the opportunity to support required training. However, accreditation bodies like the Liaison Committee on Medical Education, the Accreditation Council for Graduate Medical Education, and medical specialty board organizations can have an even greater impact by defining end-of-life communication skills competency, assessment, and training standards. Physicians have the opportunity to make these discussions a national priority and align with CMS leadership on reimbursement in this area. Patients and families deserve to work with physicians who can effectively help them match their goals and wishes to treatment options.
In the end, my training allowed me to hear and directly explore my neighbor's concerns about her husband's impending death. I encouraged her to pointedly express his longstanding wishes to his medical team, and fortunately, he was enrolled in hospice in less than 2 days. He died peacefully at home less than a week later. I only wish the medical team involved had been able to be more effective earlier to avoid the significant distress my neighbor and her family experienced. Challenging, high stakes end-of-life conversations are happening with increasing frequency, and we need our doctors trained to have them.