New Tools to Improve End-of-Life Care Decisions

Kate M. O'Rourke


November 25, 2015

Patient Communication Guide

To improve clinicians' end-of-life discussions with their patients, researchers from Dana-Farber Cancer Institute and Massachusetts General Hospital have developed the Serious Illness Conversation Guide to help train and support clinicians when discussing goals of care.[12] The guide provides tips for starting and ending a goals-of-care conversation and includes seven open-ended, patient-centered questions, such as: "What is your understanding of where you are with your illness?" and "If your health situation worsens, what are your most important goals?"

In a randomized clinical trial at Dana-Farber, seriously ill patients were identified using the surprise question: "Would you be surprised if this patient died within a year?"[13] Patients identified as potentially dying in a year received standard of care (n=43) or an intervention that involved the Serious Illness Conversation Guide and a 2.5-hour clinician training session (n=47).[12] "The training session includes a really brief didactic, a demonstration of using a guide, and then the bulk of the time is spent in small groups with an actor and a faculty facilitator practicing using the guide," said Rachelle Bernacki, MD, assistant professor of medicine at Harvard Medical School and palliative care senior physician at Dana-Farber Cancer Institute in Boston, Massachusetts. Clinicians were sent an email reminder to use the guide. Prior to the discussion, patients received a letter outlining the topics that would be discussed at their upcoming visit, so that they had an opportunity to discuss issues with their family prior to the appointment. The conversation was documented in a special section of the medical record.

The guide was well received. On a scale of 1 to 5 with 5 being the highest, physicians ranked the helpfulness of the guide as a 4.2. Patients in the intervention group had more, earlier, and better conversations about serious illness care values and goals, including having higher rates of advanced care planning before death (92% vs 79%; P=.0037; Table). The intervention resulted in more patient-centered, comprehensive, and retrievable documentation in the electronic medical record. The researchers say that they plan next to evaluate whether the guide leads to goal-concordant care and peacefulness at the end of life.

Table. Comparison of Outcomes in Cancer Patients Receiving Serious Illness Conversation Guide Intervention or Standard of Care

  Intervention Patients Who Died
Control Patients Who Died
P Value
Advanced care plan documentation before death, % 92% 70% .0037
Median timing of advanced care planning before death, days 143 63 .0008
Advanced care planning documentation in EMR module before death, % 68% 28% <.0001
Code status only, % 68% 28% <.0001
Values and goals additional information documented, % 5% 55% <.0001
Patient-centered, % 95% 45% <.0001

Data from Bernacki R, et al. J Clin Oncol. 2015;33(suppl 29S):Abstract 39.

In another analysis presented at the symposium, researchers evaluated the effect of this intervention on patient anxiety and depression compared with controls.[14] In patients with moderate/severe depression, the intervention lowered depression and anxiety significantly. Lower levels of anxiety and depression persisted after the intervention. Roughly 86% of patients said that the serious illness conversation was worthwhile, with 55% saying that the conversation was extremely or very worthwhile. In a preliminary qualitative analysis, 66% reported positive behavior changes including making changes to a will and planning a funeral, being more realistic in approach with family and friends about prognosis, and starting to think about priorities in terms of quality of life.

"Physicians aren't often trained to have these conversations," said Dr Volandes. A recent literature review found that physicians and medical students report feeling that their training in end-of-life care in palliative issues is lacking.[15] In a survey of 787 residents and fellows at the University of Florida, 75% felt comfortable with having end-of-life discussions, but 55% reported little to no classroom training on end-of-life discussions.[16]

Communication guides and videos discussed during the Palliative Care in Oncology Symposium should help facilitate conversations about end-of-life planning. For resources on discussing palliative and end-of-life care, visit

Drs Volandes, Bernacki, Hinshaw, Back, and El-Jawahri have disclosed no relevant financial relationships.


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