Boston, MA—In September 2014, the Institute of Medicine (IOM) released a report entitled, “Dying in America: Improving Quality and Honoring Individual Preferences Near the End of Life.” A key recommendation in the report is that clinicians need to initiate conversations about dying.
Anthony L. Back, MD, Seattle Cancer Care Alliance, and Professor of Medicine, University of Washington, Seattle, has spent roughly 15 years studying the patient–physician encounter at the end of life. “There is a lot that is new. We have a policy mandate that we have never had before,” said Dr Back at the 2014 Palliative Care in Oncology Symposium.
According to Dr Back, much has changed in the past 2 years regarding end-of-life issues. Commenting on the IOM report, Dr Back said, “It is our responsibility to get the conversation started.”
According to Dr Back, the IOM report is different from other reports that might have broached the same topic, because it is specific. “It gives us a clear roadmap of what to do,” he said. “The fact that the Institute of Medicine is behind this is something that we should be pointing out to our colleagues and our administrators every time we get a chance, because this is the body that sets the tone for policy direction in the United States.”
The second policy mandate comes from the American Society of Clinical Oncology (ASCO). A provisional clinical opinion issued by ASCO in 2012 called for clinicians to sit down with patients and have “a frank discussion” about prognosis, with “a reasonable forecast of survival” and an “explicit discussion of the medically appropriate goals of treatment” (Smith TJ, et al. J Clin Oncol. 2012;30: 880-887).
Dr Back pointed out that there is a new public dialogue about death that has begun to take place in the United States. An article in the New York Times, “Fighting to Honor a Father’s Last Wish: To Die at Home,” made a big splash in September 2014. The article went viral and generated more than 1000 comments on the New York Times website. The book, Being Mortal: Medicine and What Matters in the End, is on the best-seller list.
To improve communication skills about end-of-life issues, clinician training is needed. “How do we get from telling patients that we will give them an extra layer of support to talking about the really tough stuff? That is the stuff we need to teach,” said Dr Back. “It has got to be different than the death panel conversation, and we need to distinguish our public conversation from the private conversations that we have with patients.”
Clinicians have traditionally not been good regarding talking about end-of-life issues. A recent study demonstrated that between 60% and 80% of patients receiving palliative care with radiation or chemotherapy for incurable cancer do not understand that the intent of the treatment is palliative, not cure (Weeks JC, et al. N Engl J Med. 2012;367:1616-1625).
Communication Tools for Oncologists
Dr Back has developed various resources and tools that clinicians can use to sharpen their communication with patients at the end of life. Many of these tools are available at vitaltalk.org, including the following examples of PAUSE and REMAP:
PAUSE for End-of-Life Discussions
- Pause: take a moment to initiate using phrases such as, “There is something I’d like to put on our agenda today”
- Ask permission: explain why using phrases such as, “Could we take a moment” or “This will help me guide you"
- Understand: ask about values using phrases such as, “If this got much worse, what would be important?”
- Suggest: name a surrogate. Who is the person who knows you the best?
- Expect emotion: empathize first by using phrases such as, “This is a tough thing to talk about, for anyone.”
- Reframe: status quo isn’t working
- Expect emotion: empathize first
- Map: what is important
- Align: with deep values
- Plan: match treatments to values.